thru the tulips

Dad's Point of View

2012-01-06T00:06:00.000-08:00

I just wanted to let anyone and everyone know that my husband decided to start a blog about raising special needs kids from a Dad's point of view.

I hope he can connect with other dad's, so he will feel like someone out there understands. But it's good for anyone to read. It's always nice to be reminded what a Dad's point of view is. Pass this along to any special needs families' you know... or just anyone who might be interested!

www.scmc0310.blogspot.com

Enjoy!!

Dynavox anyone?

2011-12-21T17:38:00.000-08:00

So we went to an evaluation thinking we were going to come out being told to either buy an ipad or an itouch. They spent the entire time mildly outraged that anyone would suggest such a thing. They had a salesman there to give me the shpeal on Dynavox Maestro.

I have to admit, the first time he took the thing and bashed it on the table they kinda had me.

Pros about the Maestro compared to ipad:

Dedicated to speech, made by speech pathologists so it is easy to use

The therapist said it is 10x easier to program and to use than the ipad

Has camera, internet, and many of the great things the ipad has

Our current insurance will pay for all of it

Very durable

Has 1 year warranty

Can pay for warranty after that (although it is $300-$500 a year)

From 8-5 I will have tech support

They come to your home and school to teach everyone how to use it.

It uses PECS pictures (unless I choose to change them)

Cons about Maestro compared to ipad:

Someday we will have different insurance and even if it pays 80%, the Maestro is $7,000...that's still a lot

The ipad has about 1 million apps that at some point Josh will want to use (unrelated to speech) and although the Maestro is essentially a computer (PC) and you can do just about anything on it you can on a computer...it isn't an ipad

It is 3.5 lbs (and when you are only 36 lbs, that is a big deal)

It is thicker than an ipad

We will still have to pay for the warranty which is like buying an ipad once a year

His teachers are used to using ipads, not Dynavox. (Although the guy will teach them)

That is all I can think of right now. I went ahead and signed up for the Maestro with the understanding that I can call it off in the next few months without losing anything.

Do any of you have any experience with any of this? What do you guys think?

Love That Max: A simple way to help another family this holiday s...

2011-12-11T13:25:00.000-08:00

Love That Max: A simple way to help another family this holiday s...: A reader, Lynne, shared the below letter with me, which she'd sent to her local radio station, The Point 97.1 in Las Vegas, for their "Holi...

Please Come!

2011-10-23T21:58:00.000-07:00

If you have any questions please email me :)

Jesscaandrews@aol.com

http://www.fourinthefam.blogspot.com/

Theology of Disability

2011-10-23T16:20:00.000-07:00

Hello all, I received an email from Tera at the 'Kidz' blog. There is a student from Hampshire College in Amherst, MA who is doing her thesis on the LDS theology of disability. She is looking for parents of special needs kids to interview. While she is primarily focusing on the LDS view, she is also looking for parents of other faiths. She is not LDS herself. It is a very intriguing project. You can read more about it on her blog here. Even if you don't want to participate, it may be interesting to follow her blog to see what she finds out. She explains it much better than I do. If you are interested, the best way to reach her is at kohleranne@gmail.com

2011-10-19T07:56:00.001-07:00

Hey everyone. I am looking to take Mason in to get a thorough vision screening done, but I don't feel like I can take him to just any optometrist. It needs to be someone patient, good with children, and able to help a child who may not respond well to the "normal" routine of an eye exam. Have you taken your kids anywhere? Who do you recommend? I am looking preferably in Weber/Davis county, but I can travel a little if necessary.

Thanks!

Special Needs Dance Class

2011-10-12T15:51:00.002-07:00

Just wanted to let you all know that the FREE special needs dance class is starting up again in Hooper. There is a one time $10 registration fee. They meet at 5:15 on Wednesday nights at the Dance Image Studios 5495 S. 5900 W. ( right across the street from Hooper Elementary. ) MK was in the class last year and REALLY loved it. Any age, and any ability is welcome. Spread the word.

2011-10-12T15:51:00.001-07:00

2011-09-11T17:44:00.000-07:00

Hi mom's! I am starting a support group for special needs families with the help from my friend, who is also an SLP who just left  Pingree! (she is donating talents to us!!!) I am very excited because I feel like it is something that is needed in the area. I know there are many support groups on the web, but I feel like as mom's and dad's we need to get out and mingle with other parents who are dealing with similar situations. (our kids need the interaction too)

I get many phone calls from new mommies who are being tossed into "Holland" with nothing. They need to know where to "check in"   So... here I go. On a new mission to share the knowledge that I have obtained and to open my arms and invite those who feel like they too have something to share, learn or even better.. both!

I am working on venues and would love to know who would be interested in joining the group and in which city you hale from. This will be so fun and so wonderful to FINALLY get to meet! So... Please let me know if you would be interested in this!     As you know support groups only work if there are others to support you in the journey!

Autism School

2011-09-06T20:18:00.000-07:00

Hi, again.

We had some great news over this last summer and that is our son was accepted to the Pingree School for Children with Autism. We were so excited and thrilled for this opportunity. His first day was last week and although he couldn't really tell us much he seem to share his excitement in his facial expressions.

I get to drop him off every morning at the bus stop and he is so excited when the bus arrives. We are so grateful for this school and how they are helping him. The teachers have been great and he has had great progress in eating. They will start potty training him this month which is awesome. It has been so nice for my wife to have a little break and spend time with our two year old.

Lately I've been reading this book called Healing and Preventing Autism by Jenny McCarthy and jerry Kartzinel. It has been a fantastic book. We are looking to try some nutritional supplements and I was wondering if anyone has tried anything before. They say that one of the problems is the yeast build up in the stomach and that if you can get rid of that and help their immune system to operate better this can lessen some of the autistic characteristics. So its worth a try in my mind.

Well, I hope everyone has a great month. We are also continuing to raise money for our son's education at Pingree, so if you are able to contribute a little that would be great. But don't worry if you can't because I can guarantee that just about everyone has a lot of medical bills. Our site is www.lifeandhopewithautism.com and www.lifewithpdd-nos.com. I keep them both updated with the same content.

family fun for a good cause!!!

2011-07-06T15:55:00.000-07:00

hello all. Just got this email I'd like to pass along. For those of you who may not remember, Chloe's sunshine playground is the 'all abilities' playground they are trying to build in Syracuse:

A 5k and motorcycle rally are being held at The Gallivan Center in Salt Lake City on August 6th. If you register to participate, you can select to sponsor Chloe's Sunshine Playground , and 100% of your donation will go to help our cause!

The day includes all the events mentioned above along with a Special Kids Fair, live music all throughout the day, retail vendors, great food and drinks, and much, much more. The day begins with sign-up and registration for the 5-K and motorcycle rally at 7:00 am, with both starting promptly at 9:00 A.M. The Kids Fair, music and vendors are scheduled to open immediately after the start of the 5K. Everyone is invited to come and spend the day in downtown SLC having as much fun as you can find, while helping worthy causes. Also, tons of prizes will be given away throughout the day. The cost is only $10.00 per adult with kids under 10 admitted free.

Go here to register.

Please put it on your calendars, come if you can, and help spread the word! Thanks so much for your support.

A whirlwind of emotions and triumphs

2011-05-30T20:00:00.000-07:00

First, thank you to all who share your stories, it helps to know that we aren't alone. After finding out our son was diagnosed with pdd-nos earlier in the year, we then had him re-diagnosed and they concluded he was autistic. We met with a doctor from a practice called Intercept who diagnosed him autistic and they recommended we start him on Risperidone. So we started him with .25ml and we saw a major improvement the next day. We continued with the medication and bumped it up to 1.0ml. It has made a huge difference! He is more responsive, he has much better eye contact, he is not so clingy and he is saying more words.

We've been on it for two months and he is now maintaining this level and so we are curious what to do next. He will repeat words but does not know how to use them. He can barely put two words or even two syllables together. He also has figured out that we are giving him medicine through ice cream or his soy milk and now he is refusing to eat or drink and consequently is starting to revert. We've been reading a lot about the connection of vaccines to autism. We've read the Jenny McCarthy book and are pretty much convinced that something in the vaccine triggered autism in my son. My other son who is 20 months is also following the same path.

I'm sure you understand our grief and when I say our hearts aches, you understand what we are going through. Has anyone looked into alternative treatments? Does anybody believe that there is a connection to vaccines and autism. My son that is 20 months will soon have his 2 year check up and we do not want to get him vaccinated.

Thanks for listening.

Jake and Melyssa

www.lifewithpdd-nos.com

Happy Mother's Day to some of the strongest mama's I know!

2011-05-07T17:28:00.000-07:00

I Am Going On A Journey

I am going on a journey,

Won't you come along?

I need someone to help me.

A person big and strong.

I'm walking on my journey

But my feet are very small.

Can you stand beside me,

And catch me if I fall?

At times when I can't keep up

With life and all its fears,

Can you put me on your shoulders

And wipe away the tears?

When the steps I take are not big enough

And it's hard for me to grow

I know I can depend on you

To let me take it slow.

I'm going on a journey,

Please, won't you walk with me?

I need someone who understands

The place where I should be.

I promise when the road is tough

And you want to turn back home.

I will hold your hand real tight,

So you won't feel so alone.

I'm going on a journey

I don't know where it ends,

But if we walk together,

We can always be best friends.

And when the journey's over

And we find where we should be.

I know that you will be so glad,

You took this path with me.

I'm going on a journey,

Please, won't you come along?

I need someone to guide me

A parent—big & strong

QUESTION

2011-05-06T18:53:00.000-07:00

Does anyone currently seek care at the H.O.M.E clinic?? How is it?

Does anyone see/seen Dr. Carbone? Is he as wonderful as his wife, Dr. Jolma???

autism resource.

2011-04-30T17:12:00.000-07:00

Hello. I am one of those nerds who listens to talk radio all the time. (It's just about the only adult conversation I ever get) anyway, I was listening to KSL in the car the other night as they were talking about autism awareness month. They talked about a group called "Big Maks" which stands for "Mothers-with-Autistic-Kids" They've got a blog. It looks really cute and fun. I tried to remember it so I could share it with those of you here who might enjoy it. I'll also link the blog in the sidebar.

2011-04-23T08:53:00.000-07:00

Hey everybody,
I got an e-mail from a sweet little entrepreneur. Her name is Haileigh. She is only 11 years old and has severe hearing loss. For any of you who have hearing impaired kids - she has created her own business of making and selling charms and tube twists to adorn hearing aids. They are really beautiful. She asked me if I could let you all know about it. Check out her website here. And Good Luck to you Haileigh! We are impressed with your ambition!

Tiptoe thru the tulips...togther! (open invitation)

2011-04-23T08:49:00.000-07:00

I got an e-mail from Tara at "Kidz" about this special event. It looks awesome. She is trying to get a special group rate for all of us 'in Holland' to go to this together. click on the picture to check it out! (If you are interested in going as a group with other special needs families, RSVP to Tara!) and feel free to pass on the invitation to anyone else you know!

Ogden Area Autism Meeting TONIGHT!

2011-04-13T13:10:00.000-07:00

Hey Ladies! I know it has been a while since I have checked in here---as with everyone else, life is CRAZY busy right now. I did want to put a quick post in to let everyone know about the first FAAST (Families of Autism and Aspergers Standing Together) Meeting in the Ogden area happening TONIGHT at 5:00pm at West Haven Elementary School. This is a new group being formed to help families affected by autism come together and find support. This couple is awesome--they are making things happen, and I know good things will come from this. Check out the info at www.faastutah.weebly.com or follow them on their facebook page. I hope to see some of you there tonight!

We Are Alone in this Together

2011-04-07T21:12:00.000-07:00

It has been quite a while since my last post, but I have been reading all of your posts. Those who have posted this year (2011) have really hit home for me because I feel as though I can relate in one way or another.

First off, in January, I had a baby- my fourth boy, and fifth child. Two weeks after that, we moved our family from Idaho back to Utah. I feel like I can totally relate to the chaos of having not only a child with special needs but a mother to more than one child. Add on top of that the responsbilities as wife AND full-time employee, well, there is never any sort of down time. For me, because organization is NOT my forte, I find myself scrambling from one deadline or emergency to the next. In fact, you would not believe the mountain of clean laundry that has overtaken the baby's room just because I haven't had time (or made time) to deal with it.

Secondly, on the side bar of this blog, I'm listed as having a daughter with DiGeorge syndrome. Just to give you a brief synopsis of what has been happening with my daughter, Kanani, we also had her in a Utah charter school last year. Her IEP was also 'dissolved' to where she was receiving no documented services from the school. What was really devastating (looking back at it now) was that the Charter school failed to re-establish eligibility which was required a year ago. So when we went back to school in August, we had to start FROM SCRATCH on testing and determining whether or not she was eligible for an IEP and what recommended services were.

Originally, her IEP was due to be renewed on 9-18-10, but because of the testing that had to get done, we did not get the required eligibility established and signed off on until the end of January 2011. So, we too have fallen through the cracks and are now in dire need of a tutor to get caught up.

Thirdly, we have gone through a battery of testing with a neuropsychologist and last week, received additional diagnoses of ADHD, Asperger's syndrome, and nonverbal learning disability. We were strongly advised to medicate her and also to pursue aggressive social therapy, speech therapy, and occupational therapy as all are deemed to be medically necessary.

As a result of all these new things, we trialed one med for a day and had horrible response to the medication. This weekend we will trial a second medicine... I've been looking for outpatient rehab and discovered that no one south of Salt Lake will bill my insurance... and that social therapy is not available or offered in Utah.

I'm terribly overwhelmed by the gap that lies betweeen the amount of help and services she needs and the services that are available to her in Utah and at her school. What makes matters worse (for me) is that as a parent I feel like a fraud, a faker, because in reality, I've no idea how we survive and most of the time in making decisions for her care, I give it my best guess.

The reason why I share my scattered thoughts with you is not only to vent the difficulties of my unique circumstances, but to also acknowledge that each of us have our own unique combination of trials that we are dealing with. And while none of us have identical experiences, we can (I DO!!!) take comfort in knowing that while we are alone in our own set of challenges, we are all in Holland together and can relate in some respects.

So. Thank you all for being so willing and generous to share your lives with me. Its nice to know that even though my life sucks on some days, there are other mothers out there that have equally bad daysm, too. Just like me. Love you all!!

S.O.S!

2011-04-05T13:39:00.000-07:00

Im a little upset as I tried to hop that last plane to Italy, but due to some malfunctions on the plane they asked me to exit and return to my life in Holland. The flight attendents had no word on when I would be able to catch the next flight out, but she said that I should run for shelter as a storm was rolling in..........

I dont think I have prayed this much in a long while. Im feeling so beaten down by this jouney and I honestly have no one who can relate. Im trying to keep it together but ladies it's so hard. I hate being "strong" and having a smile on my face when inside Im a mess. I have not a clue as to help my child, but I need to get one as he is spiraling out of controll.

This morning by 8:00am I was in the ER because he was so upset he started head banging, headbanging so hard that he needed to get his head glued because he had mannaged a gash smack in the middle of his forhead. We were out of the ER by 9 only to return again hours later as he had another fit and started bleeding out where the doctor had just fixed.

This has been my life for the past 3 weeks. Okay, well no ER but the fits! Holy cow! It is creating chaos in my home and in my brain. I can't imagine what my lil guy is going through. He has become physicaly abusive to all around him and even worse to himself.

I need support. I need ideas of how to handle him. My fear of losing him is happening and I feel the need to hurry. hurry doing what im not sure about. I know he is a unique situation as he had Lung disease, and PDD-NOS. But Im so deperate for something brilliant to be thrown to me.

He currently goes to an ABA based facility to which he thrives in. HOWEVER, as soon as he is home, in publics, well, gee, anywhere then at school he loses all control. What therapies and such do you know about that have helped other Autistic kiddos? I feel like I have him in everything available in the 801, but maybe he needs more focus in each session or more freequent sessions? Ugh, did I sign up for this? Really?

It's been a VERY long time!

2011-03-29T23:28:00.000-07:00

It has been such a long time since I posted on here. I check it constantly of course, but I think I have become so consumed in surviving my life that I have withdrawn a bit from the places I should have probably been venting to keep my sanity.

That being said.... here is my life in a nutshell.

I found out I was pregnant last april. It was a surprise since we were done after our 3 boys. But it was a wonderful surprise and we were blessed with our daughter, Kaitlyn, on november 21st. Due to many problems with the pregnancy she was over 6 weeks early. Initially she did very well and was discharged from the NICU at 7 days old. She had some problems that I could not pinpoint exactly, but slept all the time and wasn't hitting any developmental milestones. In january she caught RSV and was in the hospital for 4 days. While there they caught her Apnea and oxygen problems. She did OK awake, but her sats would drop during her sleep and so she was discharged from the hospital on Oxygen. She is still on Oxygen 24/7 as of now due to illness after illness. She has several apnea episodes a week. We hope in the next month to get her weaned off oxygen during her waking hours. She is behind developmentally, but I think on target for her corrected age. We love her to peices. She has been a huge blessing in my life.

Trevor, my oldest will be turning 9 in a couple weeks. Since the last time I updated on here, he has been put on 3 meds for autism related issues, started one on one therapy weekly, sees a psychologist monthly, and has turned our lives upside down. I had to pull him out of a charter school he was attending and put him back in public school since the charter school let him fall through the cracks. They dissolved his IEP intending to move to a 504, and dropped the ball and left him with no services. We are currently starting over from the top basically. It is sooooo frustrating and draining on me. With the birth of Kaitlyn, we have had to hurry and finish two bedrooms downstairs for him and our middle son, Jordan. Becuase of his meltdowns we had to move the boys ouf of their room to do major repairs on their shared bedroom so we can move the baby in. His life has really truly been turned upside down in every way possible. Our family dynamics changed, his home life is chaos and school is all new with a new/old school. (He attended 1 and 2nd grade at the school he moved back too). This is the worst thing you can do for a child with autism who relies on that structure and stability.

Our youngest son, Josh, is going to be 4 in June. I joined this blog when he was 18 months. Time has flown by! He is doing pretty good, just slow and steady as usual. He still uses his g-tube for 85% of his nutrition and is maintaining a healthy weight. He has added a new diagnosis as of last fall. ADHD. He has been seeing a developmental pediatrician for a year and a half. We just started him on adderall a couple months ago. Our hope is that if he can focus more we can work on speech with him. He can say about 10 words and signs about 35-40. We are currently working on getting the PECS going at home. With his Speech Apraxia, it is very slow progress. He has so many diagnosis and is so complex that it seems like we can only take one little thing at a time. It gets so discouraging when you try to figure things out on a grand scale for him.

I hate to admit that I am overwhelmed, but I am. We are in the process of building two bedrooms in our unfinished basement for the older 2 boys. We started on Feb 21st and we have carpet being layed on April 14th. Our house is in complete chaos. All of this on top of the problems we have with two kids with special needs, and a baby who is needing some extra support for the time being. How do mom's with multiple children do this? Because I am starting to think I am not cut out for this. I have no idea what I am doing any particular day, or even hour right now.

So ladies, what do you do? How do you cope? I need some advice!!!

Application for an ipad?

2011-03-20T17:00:00.001-07:00

I have heard a lot about applications for ipads that are similar to PECS. I think one of them is called verbal victor. Has anyone heard about these? Where I can find them? Which is best for young children? Anything? I am going to ask our speech therapist as well but last time she admitted she didn't know much about it. Thanks guys!

Need an ipad for your child?

2011-03-09T18:48:00.000-08:00

Hello everyone, I just stumbled across a blog that is giving away 20 ipads to special needs kids awarded on merit/need. The give away started March 3 and just goes until they are out of ipads. I don't know much more than that, but wanted to pass on the info. Click here to check it out - and if you win one, let us all know!

Wes

2011-02-10T18:43:00.001-08:00

I was talking to my sister about what I should do with JT since he will be going into kindergarten in August. I was talking about how I just want him to be able to make a good first impression with the kids he will spend the rest of his school life with. I am worried that he will be labeled and even if he becomes better equipped in a year or two, they won't except him because of first impressions. Other kids can be so mean. Then my sister reminded me of someone she used to know. She told me the story before but now as a mom, especially a mom of JT, I appreciate it more.

My sister grew up with Wes. He was popular in elementary because he was nice to everyone. He was popular in junior high because he was nice to everyone. Nice doesn't do the boy justice. He truly loved everyone.

Eighth grade is rough, kids pushing to find their place, not wanting to stand out too much or be seen with the wrong person. In their 8th grade class, there was a girl, we'll call her Sarah. My sister didn't know this girls exact diagnosis but Sarah was mentally disabled. Sarah told EVERYONE that Wes was her boyfriend. She loved him. He never shied away from her or even corrected her. He was always good natured about it.

In 8th grade there was only one dance the whole year, the Valentine's Dance. Wes asked Sarah to go with him. She wore a pretty dress, he bought her flowers. That night she spent the whole night with the popular kids, dancing and having fun.

We have since moved so we do not know Wes anymore. But from now on he will be someone who gives me hope. Hope that no matter what the future holds, there will be good kids who will love my son even if he is different. And Sarah gives me hope, hope that no matter what the future holds, my son will be that outgoing, that self-confident.

I still am not sure about when JT will be mainstreamed but maybe he will find his "Wes". Please let there be kids like Wes for our children....

The PDD-NOS life

2011-02-06T10:50:00.000-08:00

Hi Everyone,

We created our site to share our experiences and found this awesome site. So thanks for allowing us to post and share our experiences. We are a family of five, our daughter is 5, middle son is 3 and then our youngest is 16 months. We are in SLC, UT. Our 3 year-old boy Cohen was diagnosed with PDD-NOS several months ago. This poor kid, he's been through the ringer. He's been to the hospital at least 8 times either for RSV or something else. His first 18 months he had reflux real bad. He's got asthma which makes a flu even worse, I suppose if we knew about his asthma we would have been able to stay out of the hospital. Our daughter also has asthma.

We started noticing signs early on but were a little hesitant to get him checked out, kind of a denial phase. We thought his hearing was lost because I could yell at him six inches from his ear and nothing would happened. Come to find out he had a lot of fluid built up and needed his tubes redone. This was done about a year ago. After having his tubes fixed and his abnoids taken out he was a changed boy. But he still didn't progress in talking. He was also a late walker which is the same with our youngest.

Throughout his life Cohen would not eat well. After his reflux he would live on milk. It was about six to eight months ago that he has started to eat better but we are still a ways from normal. The doctors said that he has a lot of sensory issues. So after several doctors appointments they diagnosed him with PDD-NOS. So we met with the school district and the Early Intervention program was able to start with him. His appointments were always pretty good but his progression was slow. If he were to learn a new word, there is know way he would repeat it later, which I guess is one of the symptoms of PDD-NOS, so although they were good it is always a little depressing.

We received the Tullips letter from a lady that my wife visited with about Cohen and that really hit home for us. Some days we are good with his condition and other days its rough. He is such a darling boy.

Well, there is a start to our life right now. We have a website called www.lifewithpdd-nos.com, check it out. Hope everyone enjoys the Super Bowl. I doubt the kids will let me watch it.

JT and me, the last little while

2011-02-03T19:37:00.000-08:00

Life is crazy nowadays. Going to school, applying for the OT program at U of U, keeping up the house, trying to keep JT going in the right direction with therapy etc. But things are going pretty well.

JT is as fun as ever. He may not be able to speak but he has learned how to have a conversation anyway. One day my husband was watching Top Gear America (car show, we like the UK version better though) and JT kept up this generalized whine. I asked him to stop whining and tell me what was wrong. He pointed to the TV then made a disgusted face and shook his head. My husband and I couldn't stop laughing. He will find any way to get his point across.

It was lunch time and JT got out the cereal. I told him no and put it back. He took it out, I put it up higher. Then he came back with his PECS book. He had put on "I want cereal" and then at the very end he had added "cookie" too. I guess if you can't get cereal, cookies will do too.

We are moving into a lot of fun new stuff. We are having someone meet him to hopefully help us find something to help him communicate with the world. He goes in for his first IQ test on Monday. (I think I am actually ready. I hope I can take the numbers and if they are high, be happy, and if they are low, say, "I don't believe it, my son is smart no matter what you say") He is starting supplementary speech therapy this week. So we are busy but it is a good thing.

In good news, the doctors have decided that JT will be able to have 2 years between MRIs now. Also, he only has to see his Rehab therapist every 6 months although I am pretty sure this will change because although the Baclofen was working really, well I think he is tightening back up. The dentist says his teeth and gums look good (our first dentist check up, late I know). Amazingly, he still has his front teeth (he kept falling this year and smashing them in) but if he doesn't loose at least one in the next month I will drop dead of surprise.

This semester in BioMed we have spent the last month on the brain. After learning, in detail, about everything the brain does and what different parts of the cerebral cortex do I feel like getting on top of a building and shouting, "MY SON IS AMAZING! YOU PEOPLE HAVE NO IDEA!! HE IS A MIRACLE!!" There is no way he should be doing everything he is doing. Even if he never speaks, he is a miracle. How is he able to do anything? He is missing more than half of his brain!! This shouldn't be possible. He is so funny, he is so creative in getting what he wants and communicating, he can walk, he has some fine motor skills, he understands when I talk to him, who could ask for anything more?

So all in all, we are doing really well. I need to write more. I hope you all are doing well!

catch up.

2011-02-03T15:54:00.000-08:00

My Goodness, it's been such a long time since I posted anything here. Like many of you - I've decided to go back to school. I'm busier now than I should be and too many things are falling through the cracks. I thought I ought to post a little update any way. So many things have been going on...

Last time I posted I mentioned the issues we were having trying to get MK's walker. We ditched Alpine and went through IHC (The Wheelchair Shop) And they have been wonderful. I've had someone from IHC calling me every few weeks to let me know how things are progressing. At this point, we are just waiting for the walker to come in from Rifton. I expect it any day and we're so excited. What Alpine couldn't do in a whole year - IHC has been able to do in just a couple months. The funny thing is that MK is doing really good with her walking now. She's able to control it better and go further distances. It's so exciting to see, and gives me so much hope.
Our baby is now 13 months old and walking too. They practice together. I'm so glad the baby didn't pass her up. But my heart hurts thinking about the day when she most definitely will.

Our last check up with the docs at Primary Children's was also very good. Because MK is doing so well with her walking, she was able to graduate from wearing DAFOs. Hooray! Just when I thought we were going to be able to go shopping for cute girly shoes - they want her to wear little 'construction' boots to support her ankles. :) I'm still not complaining!

She is really enjoying the free dance class at Dance Image in Hooper. They are so good with all the little girls there, and it seems to be helping her movement too - just by trying to move in different ways. Not to mention the fact that she absolutely loves dressing up in frilly little dance clothes.

Hope you all are doing well.
Tiptoe Mama

must watch...Warning you will laugh as this is all to familiar for some!

2010-12-28T19:36:00.000-08:00

http://www.youtube.com/watch?v=A6fcIqUHz8Q

Sensory Integration

2010-11-01T17:24:00.001-07:00

Hey everyone! I am doing research for a college class on Sensory Integration (does it work, does it not work). Most OTs use Sensory Integration techniques. These techniques are supposed to help our children process and integrate what their senses take in. It can help with motor functions, behavior, and so much more.

I was hoping to get some feedback from parents whose children have used SI in therapy. Did you like it, more importantly, did your child like it? What exactly did your child do? Did you see improvements? etc.

I know it is sometimes difficult to decide exactly what method your therapists are using but if you even think that you have something for me I would love to hear from you.

I think if I have some input from real people who have experienced it (even if it is just through their child) it would enhance my paper and presentation. I have my experiences with my son but it seems biased if I am the only one. Thanks guys!

Great Idea for Picky Eaters!!!

2010-10-30T10:35:00.000-07:00

My oldest daughter Taylor has always been a terrific eater, at 2 years old she was eating salmon and steak and now at 4 she loves sushi! I never had to argue with her to eat and I never had to make separate meals for her because she loved everything, including roasted bell peppers! My baby Madison is a completely different story! I dread mealtime because I look ridiculous jumping up and down singing food songs and trying to persuade her to eat. Basically she has three food groups, bread, any kind of drink, and junk! She would be content drinking milk and juice all day long and nibbling on bread and Cheez its! It drives me nuts! She refuses to eat meat unless it is well hidden in pasta or some other carb. At first I thought it had to be some characteristic of Down syndrome considering my older daughter's eating habits but in fact it has more to do with being 2 than any sensory issues. Not to worry I'm not just complaining here....I actually found a solution!!!!

A couple years back I had bought the book "Deceptively Delicious" (surprisingly it was to help hide veggies for my husband!) Well this book came in handy with Madison because I could hand her a plate of macaroni and cheese that was full of hidden cauliflower and she would eat it without hesitation and without a song and dance from me! The only problem is I don't always have an hour to create this full meal with hidden vegetables in it so back to the song and dance I went. Well the author of that book came out with another one called "Double Delicious" it has the same idea of hiding pureed veggies in regular food but this cookbook has a lot more simple and quick recipes. Two nights ago I made the recipe for tomato soup, it was full of tomatoes (of course), broccoli, and sweet potatoes. After it was done cooking I poured the whole pot into a blender and pureed until it was perfectly smooth. Then I poured it in a sippy cup that had a straw instead of a spout and my insanely picky eater drank the whole thing!!! Over 2 cups full of healthy veggies! No song and dance, no 2 hour meal plan to pop out with some spinach chicken nuggets, just 30 minutes, a blender, and my baby was drinking her veggies! I'm thinking I'm going to spend a day making lots of different soups, freezing them, and having them readily available to trick my bad eater into drinking some veggies!

Gratitude

2010-10-30T09:12:00.000-07:00

"If ingratitude be numbered among the serious sins, then gratitude takes it's place among the noblest of virtues." Thomas S. Monson

People generally seem to think that special needs moms are some kind of super moms. Not true. By any standard - I am a mess! :) I came across a fun new website recently though, and read a great little article. I've already had gratitude on my mind after hearing President Monson's talk on it in General Conference. But reading about it again in this article really inspired me. I've been trying to be grateful lately, and I've learned two things:

Sometimes it can be REALLY hard to be grateful.
Being grateful feels WONDERFUL!

I wanted to share with you something I am grateful for. I sat in MK's dance class thinking what a great thing it is for her and all the sweet little girls in the class to be able to dance! Who would have ever thought that girls in walkers and wheelchairs could dance?! Just the idea of it puts a lump in my throat! And a mom next to me told me all about her experience with Shriner's hospital and all the great things her daughter (who has CP) has been able to enjoy because of them (like skiing, and riding a bike!) Then, I saw in the newspaper that there's a karate class in Roy for special needs kids. And I became overwhelmed thinking of all the great resources and opportunities there are for our 'special' kids. What an amazing thing that there are so many people out there who have cared enough, and thought enough about our kids to go out of their way just to make it possible for them to experience all these great things!!! We are so blessed!

November is just around the corner, which means we will be doing a tradition that we got from my sister just a couple of years ago. All during the month of November, we hang up a "Thankful Poster." Everyday, each of us write down at least one thing that we are thankful for. On Thanksgiving, we take down the poster and read it at the dinner table. It is so fun to see all the things we have to be grateful for. There are so many!!! I wanted to share this idea with you because it has been such a good thing for our family. I thought you might like to try it.

One last thing I am grateful for: All of you! Thanks for being here and giving me a place to fit in with my special needs.
Tiptoe Mama

p.s. to you new moms whose pictures haven't been posted in the sidebar yet, please forgive me! Like I said, I am a mess! I'm working on them and will get them up ASAP

Amsterdam International

2010-10-25T15:54:00.000-07:00

Hi all, I got this e-mail the other day. Thought I'd share it at Dana's request:

Hi there,

I found your blog while searching for mom (or dad) blogs that deal with raising children with special needs. I have a child with special needs . . .she is 2, she is nonverbal, she can't walk or stand without help, she loves her dog, she's sneaky and hilarious :) I have a small blog where I talk about things with her, things with my family, etc.

Two weeks ago I published my take on "Welcome to Holland" (the traditional poem given to parents of children who are "different")---called "Amsterdam International". I wrote it because I think "Welcome to Holland" is kind of lacking (for many parents). It presents a nice little everything-will-be-just-fine-look!-there-are-windmills type of view, and kind of dismisses (by omission) the terrible turmoil that some parents go through as they process that their child (and life) will always be "different" (especially during the newly diagnosed period).

I thought you might be interested in it, as may others in the different communities/messages boards/ etc that you may frequent. I'm just trying to put it out there, with the hopes that some parents will come across it as they are coming to terms with things, and they might find comfort in knowing that their thoughts are normal and they're not alone. Please feel free to pass it on, blog about it (whether you like it or don't), email it, share it on Facebook, anything that might help it find people who will be comforted by it.

Here's the link:
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

(It was also recently featured on downsyndromepregnancy.org, families.com, the Down Syndrome Centre of Ireland page, and a number of blogs. It's also been shared over 400 times on Facebook.)

Thanks for taking the time to read this :)
:)
Dana & co.

A new special needs dentist is in town!

2010-10-14T10:20:00.001-07:00

When I was growing up I had horrible teeth. A dentist was a HUGE part of our back to school preparations. The dentist we had growing up was wonderful and he is still my mom and dad's dentist. I was never afraid of the dentist and yet, still always had cavities.

When Tyler FINALLY got teeth a few of them grew in rotten and missing parts of them. It was horrible. We quickly found a dentist in Arizona and worked to get his teeth fixed. It was not fun. He screamed, cried and in the end we ended up under anesthesia.

When we moved back to Utah it was not top priority. He wasn't in any pain and we brushed his teeth. Last well child visit we were reminded that he needed to go to the dentist. ( Gently reminded.... See, Marisa I listen!)

So, on Tuesday we made the trek and we went on in to the dentist. We had an appointment at The Little People's dentistry. The office is officially a Special Needs Hub. They have become certified in taking care with the extra special kids and are able to give them the dental hygiene that they need.

The office staff is SOOO amazing. The front desk girl is so nice. She knew our name and directed her talking to Tyler. He loved that.

The waiting room is perfect for kids. There is places for the parents but the slides and the play place for the kids made Tyler right at ease. He wasn't even shy and timid.

He was called back to the back and they took him on a tour of the office. Showed him the rooms, offered him a toothbrush ( Super Sleuths Winnie the Pooh) and let him take his time to walk around before our appointment started.

The exam I wasn't too worried about. I was more worried about the dentist. Dr. Stewart was GREAT. He came in and talked to me and Tyler and got some information regarding his past history. He gave me a lot of information in ways that we could help out Ty's future dental health. We knew he was at high risk because of his NICU start. But I now have better information to help the next set of teeth. He was really really good.

The exam. YIKeS! Tyler did pretty good. He did cry and had some major freak outs at the beginning. He wasn't a fan of getting his teeth "counted"but Dr. Stewart was very good. Tyler calmed down when something familiar ( brushing his teeth) but the flossing was pretty crazy!

( Dr. Stewart does do lap exams and does teach them to go on the chair. He does discuss the options as to what is best for YOU and your child!)

As soon as the cleaning was over Ty was back to his happy self. He proudly walked himself out and got a prize and headed back out to play on the slide in the waiting room. He was a good sport and we will definitely be going back!!

The staff at Dr. Stewart's were amazing and very understanding of Tyler and his issues. They were friendly and went out of their way to help him have a good appointment. I would recommend his office and staff to anyone. We have our appointment set up to return!!

P.S They humored Tyler and brushed, flossed and fluoridated Mickey Mouse. Tyler and Mickey were given a teeth healthy bill of health!

To make it even better, anyone who goes to Little People's Dental and mentions Tyler, this blog or Thru the tulips will get $25 off their first visit.

Another HUGE bonus. There is SO much teeth healthy information on their webpage. Stuff you can refer to after you get all the information at the office!

So.. go, get your teeth cleaned, get all the information to keep your kids healthy and happy and smile perfect teeth!

* Dr. Stewart has rights to PCMC and also surgical centers around the valley. *

I have lot's of questions!Answers Please?

2010-10-11T20:10:00.000-07:00

So much has changed in my life in just a few short months! First Jonah was diagnosed with autism, then 2 months later reevaluated with a second opinion and was slaped with the label of PDD-NOS (seem so much more fitting) He will start at Pingree next week, but I fear he will not get the socialization that he needs as the ratio is 1:2

Questions~

1) Who did you bring with you to write an IEP??

2)What are the most important things to make sure make it on the IEP?

3) Has your child gone to Pingree? If so what was their experience???

4) Would it be ok to keep in enrolled in and hour class with DDI while following ABA??

5) Has any one tried the GF/CF diet?

Thank you Medical Mommies!!!

A necessary evil, or just evil?

2010-10-07T16:11:00.000-07:00

I'm not sure if I'm venting a frustration here, or asking for advice. Maybe both.

I am having issues with medical equipment/supply companies. I hate them all. We have had bad experiences with Praxair in the past. (DON'T get me started!) so when MK needed to get a walker, we decided to try to go through Alpine instead. Long story short: it has been a year since we "ordered" the walker. Our sales rep never returns our calls. Every time I have called him I get a different story. They are waiting for the insurance to go through, they are waiting for the medicaid approval, they have put in the order and are waiting on rifton to process it....yada yada yada. Just now I spoke to the guy again. Apparently, the insurance + medicaid wouldn't cover the whole cost, so instead of letting us know, they just did nothing. The order has never been placed. Meanwhile, we've been sitting here waiting for our little girl to get a walker. It's been a YEAR!!! I'm ready to pull my hair out!

Can any of you recommend a better company to go through? Any suggestions or tips? I called Rifton directly to see if I can order through them instead of going through a company. Caught them after hours and had to leave a message.....so frustrated.

Do Unto Others

2010-10-07T14:55:00.000-07:00

Please put some thought and share this with other people. Also consider this when you are thinking about the healthcare issues we are facing today.
Do Unto Others

I remember 2 years ago

2010-09-28T21:24:00.001-07:00

Did you know that only 2 short years ago we learned that our little Bree Annie was going to have a different life than other kids?
Most days it feels like it was a lifetime ago, sometime for fleeting moment I forget she has some difficulty. Other days, it feels like I am learning the news for the first time. I remember having to hold her in my arms while she was given and IV. I remember the look on Luke's face when she was screaming for us but we couldn't go to her. I remember asking the nurse to please give Bree her kitty blanket as a little bit of comfort as she laid on a table for her first MRI. I remember the look on the techs face and how 3 nurses were looking at the screen when her pictures first came up. I hated that she fought the drugs so hard they had to give her more. I remember trying to be strong for Bree and Luke but telling Luke I was going to the gift shop to get some chapstick, because as we were waiting for her to "come our of it" her lips were getting really dry. It was a good excuse to go cry in the hallway and then get the chapstick. I remember hating that night because they told us we had to watch her and make sure she didn't stop breathing.
I can remember like it was this morning, sitting in a small office looking at a computer screen of black and white fuzz. Trying to wrap my own mind around what the very sweet, compassionate, knowledgeable doctor and doc-in-training were telling me. Their words still sit with me... as if it was coming straight from our Heavenly Father. "She is so charming and beautiful. She will make it through this just fine. I will not lie. This is will be hard for you all, this will be a lot of work for you all. I do not say this to make you feel bad for others, but to give you encouragement to move forward, this is a relative mild case and she will live a full and happy life." That is pretty much all I can remember them saying in that meeting. They asked if we had questions, I do not remember if we asked any. I remember calling my Dad, he is my medical go-to guy. I don't remember what he said other than "we are here for you", but I do remember the feeling I had when he calmly and gently talked.

Looking back I see Heavenly Father's hand in it all. She was born is scary, very scary circumstances. But was okay after that, as if it were a precursor, our path being paved. A few months later while talking to her OT and telling her the "birth story" she was very inspired to say "what if she had a stroke due to all that stress?" I talked to my very inspired doctors who wasted no time in getting her to be seen at Primary's. Her doc made the appointment himself. When the results came back, he wasted no time in researching, calling, talking, and learning all he could. Not too long after that some very,... well there is no word to describe how incredible this group of students are, more specifically 2 girls are. They put together and organized a fundraiser for Bree. I remember getting a text from my Dad, telling me to come out back. He told me that OHS HOSA (Ogden High School Health Occupation Students of America) were looking for an alumni to offer a service for. They learned of our news, that we had just learned about a few week before, and asked if they could help. The tears rolled down my face. The love I have for those students is beyond words, and the love we felt from the entire community that donated prizes, and matched funds was truly humbling and overwhelming. More than the monetary help (though very appreciated and greatly needed at the time) it was the love that was shown to us, the support of a community, the true concern and love from a couple a girls and the love of whole ton of high school students. That is what I needed. To know that I had help and a place to go.
Bree's PT told me about a blog of Mom's going though what I was going (what I am going) though... a very good place for support.

Today Bree struggles. The transition of moving has not been great for her progress. I have had a hard month of trying to track down a new PT, because she needs a new DAFO and she is walking from toe to ankle instead of toe to heal. She gets hurt a lot because she is not using her muscles correctly. Her vocabulary is growing daily, which is AWESOME, but she is not understood, which has caused a ton more meltdowns, fights and frustration. I have a few fears of what is coming, but I my neighbor had the right contact info I needed and Bree will be assessed for Early Intervention, Preschool the end of October. I have contacted Timpanogos Hospital's PT program and she will be starting that hopefully next week, we are having a hard time getting a referral. I have been going back and forth on swimming therapy, it seems perfect for her, but finding the right class is a a problem. I don't want to enroll her in a regular class because she is
A. Fearless, she will jump in and just expect to float and that doesn't work really well in a class with one teacher.
B. She will not only need to learn how to swim but to add PT in there... which a regular class doesn't do. So I would like to talk to the PT next week about it.
Her OT skills are really doing nicely, but that is something I work with her at home. She can hold a piece of paper and cut one time, which is HUGE for us. I have noticed that she has started using one hand to hold paper and the other to color, YIPEEE! When we cook things, she can put her weak arm around a large bowl and "hug" it while stirring with the other, so she is really coming along way in OT. So there is a little sliver lining to my ever growing dark cloud. I have said it before, but she is a trooper and never quits... even when she should. She is still having a hard time learning her physical limits, boundaries and stranger danger. But we talk about it a lot and Em and Jer are really good about reminding her in a sweet way, and that helps me!
So there it is. 2 years and give or take 2 weeks ago... I went back and read the post from that time. I read the comments..... Thank you all for being so supportive and sweet. All those kind and positive words really impact me still. I am very blessed to be surrounded by great people.

It's been a really long time

2010-09-26T15:15:00.000-07:00

It's been a really long time since I posted on here. Mostly it was due to summer and all the kids being home. It was pure craziness trying to manage everything. Although now that school is in session, things aren't any better, just different.

I am currently 27 weeks pregnant, and so far my dream pregnancy has not happened. I have had problems from about 10 weeks on. I do have my sugars from the gestational diabetes under control finally, enough insulin will do that! I have had contractions and I am taking meds to keep them under control and doing scheduled resting for now. There is alot of concern about what is going on, but I have made it this far. My OB just really wants me to make it to Thanksgiving, which puts me at 36 weeks. If I have her that early.. or earlier, we are looking at a NICU baby, but I hope not. The odds are not in my favor. Oh well, such is life.

We have two special needs kids. This is not new. But wow! This school year is presenting some challenges managing two of them with school. Trevor, our 8 year old (autism) is doing relatively well at school, but home is another challenge. With some one-on-therapy, group therapy, meds, and implementing a very strict schedule, I think we are on the right track. At least I hope..

You add in Josh, our 3 year old (multiple diagnosis) and preschool... and I think it's what threw me for a loop. He is doing great in special education preschool, but it just adds another thing on top of everything to worry about. Between doctor appts, speech, meds 4 times a day, feedings, him finding out how to pull out his G-tube, counting calories, trying to keep him healthy, it has taken me longer to adjust to a school schedule on top of that. But it's doable... just busy.

Even a year ago, I would not have imagined my life so crazy. Everytime it seems like it can't get any more chaotic..... life changes and it does. Anyone else feel that way?

letter to parents

2010-09-21T18:14:00.000-07:00

Let me introduce you to my daughter, Mary.

Mary is a student in your child’s class. She has been sharing information about herself with the children via her DynaVox. Her Dynavox is her augmentative communication device – it is a computer that can talk when she activates it with a switch. She is learning to communicate that way because she was born with Arthrogryposis and cannot use the muscles in her mouth very well. Because Mary’s mouth muscles don’t work very well, she has a tube in her neck for breathing. It is called a tracheostomy – we call it a trach (pronounced trake.) Sometimes Mary needs secretions suctioned out of her trach. It doesn’t hurt her and it isn’t messy when she needs this. She has a nurse with her all the time and her nurse uses the suction machine to help Mary. She also uses a wheelchair because her joints and muscles in her legs don’t work the same as most people. Mary’s wheelchair is purple, one of her favorite colors! Some of the other things she likes are horses, Dora, swimming, playing outside, and reading.

If you have questions or concerns about Mary’s condition or friendship with your child, please feel free to call me.

Chaney, Mary's mom

This is the letter I wrote tonight for Mary's teacher to give her classmates' parents. I'm pretty pleased with the way it turned out.

Gluten-Free, Casien-Free

2010-09-21T11:27:00.000-07:00

Has anyone done a gluten-free casein-free diet? And if so, did you see results with your kids? A therapist suggested it to me, but I'm hesitant to go all out. I can easily replace other grains with the wheat and I've started to do that more often anyway...but the dairy. I'm not sure I can commit to taking that out of her diet.

Any experience with this would be helpful.

A Bit of Appreciation

2010-09-15T14:34:00.000-07:00

Lately I feel so grateful. There are certainly plenty, and I mean PLENTY of things to be ungrateful for, but I've chosen (for my own happiness) to focus on the other things -- those things for which I am grateful. Because, for me, it is that: A choice. Sometimes a difficult one, but I have found that when I choose an attitude of gratitude over, well, an attitude of non-gratitude, I am happier. Another happy effect is that it can also be quite freeing.

So, one thing that I've been overwhelmingly grateful is for those who take care of my sweet Sammers. We have been so so blessed. Our doctors (all but a few) have been phenomenal. And I'm talking, phenomenal! They answer my questions, call me back -- what a concept, are interested in her, want to help, are compassionate, etc. Samantha's teacher and teacher aides are incredible. They love her so much and are so gentle, loving, and plainly perfect for her. Her therapists (PT, OT, and Neurodevelopmental) are all three fabulous! To be honest, I wasn't so sure about our PT when we first moved. I wasn't thrilled. She's new and I could tell she was uncomfortable with Sammy -- she is quite an unusual case I suppose. But I have grown quite fond of her as she has become more comfortable with Sammy. All three of them have taught me exercises to do at home, work well with Sammy during therapy, and are some of her biggest fans! Finally, Samantha attends a daycare once a week after school so I can tutor from home. She's only there a few hours, but this daycare is set up for "medically sensitive" children. Those nurses and attendants there are awesome, for lack of a better word. They love love love her. They are patient with her. They laugh with her and play with her. Sammy loves it there.

I recently started thinking about all our kids. At some point, there is a time when we have to "let go" a little bit. When our kids go to school, we turn them over to other adults. We hope things go well, and hopefully we've taught them how to be, or start to be, socially successful, how to follow instructions, etc. But when we have little kiddos who can't tell us how the day went, it's easy to worry. We have to go off of what we know, and sometimes, we don't know much. Today, as I read my friend's blog...seeing her little girl smile with delight at preschool, I felt so much gratitude for the whole team of people who help take care of my little Sammy. There are few things that are more precious than our children, and it's so comforting to know that when she's not in my own hands, she's still in good ones.

Pingree???

2010-08-29T11:34:00.000-07:00

Does/has any one sent their child to Pingree??? Jonmah was diagnosed with High functioning autism, but the dr said an autistic school would be ideal for him. I called a feew in the salt lake area and A they are either to expensive or B, they are ABA. I called and the waiting list for Pingree is any where from 6 months to a year and a half!! Is it worth it?? What if i just home schooled?? He is just approaching age 3, so he will be in preschool for 3 years. Im just looking for some thoughts and ideas on education for autistic children.

Baclofen anyone?

2010-08-27T15:33:00.000-07:00

Our doctor has suggested we try baclofen for Josh's spasticity. Does anyone know anything about it? So far I have read that you can become less coordinated, have fatigue, become depressed, or become irritable. There are also some bad side effects for quitting cold turkey but I don't plan on doing that. Anyone? Anyone?

Botox Problems

2010-08-25T14:23:00.000-07:00

Hey guys! So last January JT got botox like he does every 6 months but something went wrong. After a month the botox started wearing off and wearing off fast. Within about 5 weeks of getting it we were back to where we started. The reasons we were given were that:

1. It was a bad batch of botox

2. It was a badly placed injection

3. For some reason his body isn't reacting the same way it used to.

So at the beginning of August we did another round of botox and this time we bumped him up to the maximum dosage. It worked. I have never seen his leg be that weak. You could tell how he walked and moved that the botox was working and when I pushed his foot back toward his shin it actually MOVED!

But now, not even a month later, I can see him tightening again. We have a night stretching strap but now that I am putting a little tension in it he can't sleep through the night with it. I can barely get his ankle to 0 (ankle and a 90 degree angle) and when I do he says, "Ow".

Have any of you been here? Do you know of other options other than surgery? We see his doctor in about a month but if I can come with some ideas it would be nice.

Suggestions????

2010-08-25T08:27:00.000-07:00

I am in need of some advice and direction....

3 months ago, or so, Bree was released from Early Intervention. She did not go without a fight that's for sure! She had so many pulling for her- her PT/OT and speech therapist were fighting the system, so to speak, to get her into the pre-school. After her test came back and she was just a few point above the lowest qualifying score, it was ultimately decided that she would not continue. I was upset at first but then realized that it was going to be okay and we would figure something out.
Since then my hubby got accepted into grad school (YAY!!!!!) and we have moved to Utah County (Provo to be exact). I told myself I would let Bree have a really fun therapy free summer- and we would pay for it later. School is starting in the area, meaning summer is coming to an end. So it is time to "pay for it" I guess. I am feeling a twinge of guilt due the fact that I am not the one that will really be paying for it; it was a nice break for her. However, she has really fallen behind and even regressed a bit. {BAD MOM!!!}

I have looked into a few programs in the area but I am wondering where to go, as we are new to the area and Early Intervention still isn't an option. I have checked into the Now I Can Foundation- Thanks for that post. And that could be a possibility for her, but it will be a pricey one for us.... Any ideas or thoughts?

Thanks! And Welcome to the the new Moms! I am excited to have you here!

My Story

2010-08-23T09:32:00.000-07:00

Hello all! My name is Kat, I got thrown head first into the world of special needs a little over two years ago and have been charging forward ever since! I have two amazing little girls, Taylor who is 4 (and a half!) and Madison who just turned 2 in July. Madison was born with Down syndrome. Here's my story...

I was 22 when my husband and I found out we were pregnant for the second time! We had just barely decided we we're ready to start trying for number 2. It was 2 months before our first daughter's 2nd birthday and it didn't take long, one try and I was pregnant! Everything seemed pretty normal. We were in the process of buying our first home and I was training at my new "big girl" job.

During my pregnancy I took the AFP test which is supposed to check for any genetic "malfunctions." I wasn't at all worried about the test and just took it simply because my doctor told me to. In fact at my next visit my doctor told me that my test results came back normal and I had completely forgotten I had even done any tests (that's pregnancy brain for you!). During my 5th month I got the flu really bad and dropped 14 pounds fast so my doctor wanted me to visit a high risk pregnancy doctor to keep an eye on our girl. Everything there was completely normal, she measured two weeks bigger than she should but my doctor said not to worry she'd just be a little big, possibly 8 pounds but no bigger.

Fast forward to 2 weeks before my due date, my contractions start! We jump in the car and drive to the hospital and 3 hours later, after the wonderful anesthesiologist messed up during my epidermal and did a spinal tap on me by mistake,our baby girl is born. She weighed in at 9 pounds, 2 ounces! When the doctor put her on my belly I noticed something was different but I didn't know what, mind you my head is spinning still from the spinal tap. The nurses take her over to clean her up and they had worried faces. I told my husband something was wrong but he kept assuring me she was beautiful and perfect. I asked him to go over to her because I just knew something wasn't right. My doctor could tell I was getting panicked so he came over to me and told me the news that changed me forever.

"I think she has Down syndrome."

There it was.The phrase I never imagined I would hear. I'm 23. Who thinks they will have a child with Down syndrome at 23?

"Are you sure?"

"I can't say it matter of fact but based on what I see I'd say she does"

I cried. A lot. I didn't know anything about Down syndrome. I knew some basic characteristics but that's it. My doctor called our pediatrician, our angel with a stethoscope, and she was there within the half hour. She held my hand while I cried and she confirmed what we already knew, our baby had Down syndrome. She told me we could do this. She told me that things may be tough but we were strong and so was our baby and together we would do this.

After she left I locked myself in the bathroom to cry. I left myself have that moment. At times I regretted that, questioning myself "how could you cry in despair the day your daughter was born?" but now I know I needed that. After I cleaned myself up I asked to hold my baby. I held my baby and looked in her eyes and knew I could do this. With her in my arms, I can do this. And I have.

She is two years old now. She is a healthy little girl. We've had our bouts, a couple E/R trips, pneumonia twice, and some minor delays but we get through them and come out stronger. I know two years doesn't seem like long but I have grown so much in those two years, right alongside my husband and our girls. Our girls are both very smart and oh so entertaining! I can watch them for hours. My job was very understanding and now they let me work as extra help so I get to pick my schedule and the rest of the time I get to be home with my girls. It's not always easy, but its always worth it!

I look forward to getting to know all of you as we share our journeys! I also have lots of family updates here! Our local foundation, Central California Down Syndrome Foundation also has a website, CCDSF, if you're interested in looking.

Introducing Samantha

2010-08-20T21:44:00.000-07:00

Hi. I'm Jenny. I'm wife of Marcus. Mother to Samantha and Callie. I'm a happy person most days. But I think I'm pretty normal. I get frustrated and angry too. About 4 years ago, I used to get my feelings hurt a lot.

Just over four years ago, Samantha was born. We knew at 20 weeks gestation that she was not developing properly. This, we knew. We knew her head was too small. We knew there were some major concerns with this. We knew that it wasn't "normal" to have a head that was too small and we knew it wasn't "normal" to be monitored weekly by doctors for the last 17 weeks of pregnancy. But we also knew, through blood work, that though they didn't know what the problem was, they didn't think it was life threatening. Our baby had a good chance of living through the pregnancy.

We did a lot of internet research. "Small gestational head circumference." Google can be great, but can't it also just break your heart? I spent hours looking at different websites, trying to find out as much as I could about the unknown. It's quite challenging by the way. But among the things we knew was the fact that she had microcephaly -- micro (small) cephaly (head). During my pregnancy, though, I felt such peace. I felt a true sense of "It'll be ok." I took that to believe her head would be fine. Miracles happen. Some people would have called it denial. I called it faith.

They induced me early and had a team from the NICU ready to whisk her away. She came so quickly...and after 3 pushes (it helps having a small head), she came out screaming to the world. She was healthy, but small, and she was able to stay with us. No NICU needed.

Three months later we went to a geneticist at Primary Children's Medical Center in Salt Lake City, UT. She received the diagnosis of Primary Autosommal Recessive Microcephaly -- there was no genetic test to confirm it, but she fit the bill (though I had my own feelings that wasn't her true diagnosis -- but what did I know?). We were told it was extremely rare and that they couldn't tell us much. She did print off some things she found on it, and sent us home. Back to what I knew: I knew my daughter had a small head. I knew she was "healthy." I knew I knew it was going to be ok. And now, I knew she had this diagnosis. Things didn't compute. But it was ok...because things were going to be ok.

It wasn't until about 3 months later that I thought, "Things are NOT going to be ok." We were doing therapies and she wasn't progressing like the many other babies in our church group. People were staring at us in the store. Some asked questions that made me go to my car and cry -- "What's wrong with her?" It was so hurtful. I wanted to shake them and scream, "Nothing is WRONG with her. She's a beautiful little baby girl who happens to have a small brain. [insert insult here.]" I know, real mature. But I never said or did those things. I'd just answer their questions politely, "oh she was born with a genetic condition." Or if I didn't feel up to it, "She's just small. My itty bitty girl." And smile as I'd try to hide the tears. My emotions were very close to the surface as I was realizing that things weren't ok...little did I know they'd get worse...and I was feeling so extremely overwhelmed.

It was then I decided I couldn't live my life this way. I decided to change. What I felt before...that it was going to be ok, was true. It was going to be ok. Maybe not how everyone else thought, but it was going to be just how my Heavenly Father wanted it to be. Samantha was sent to our family, the way she was, for a reason. Maybe just to increase my own faith, or the faith of those around her. I decided to be strong, and to be the mother that Sammy needed me to be. I also realized that people can be insensitive without meaning to be. They are curious, and I didn't want to discourage people from asking questions. I wanted to educate them. After all, if what Samantha has is so rare, what an opportunity for people to learn how this amazing little girl with such a small brain can be.

A month later, life became more hectic and I was so glad that I had changed my attitude before we began the life of seizures, surgeries, and sleepless nights. Samantha is our angel. She really is. She is the sunshine in our day. She's tough at times, sure. But she is such a delight. The day she was born, I sat on the bed holding her in my arms. Marcus leaned in, and with his arm around us said, "One day, we'll look back and will say 'we wouldn't have it any other way.'" He's right. It took some time, but today, I can say that most of the time that is how I feel. I see how much she has changed us. She is quite the star at the local grocery store. They all know her. Before we moved, she regularly got suckers and stickers from the workers at the stores. She has a magical power over most everyone she meets.
We are still uncertain about her diagnosis. Most recently it was suggested to us that she may, in fact, have a form of primordial dwarfism -- Seckel Syndrome. When our insurance changes, we are thinking of pursuing genetic testing. But even if we never know for sure her scientific diagnosis, it's plain obvious that she is plagued with love, determination, and the purest most beautiful spirit. She's just my sweet little girl -- our lil' samsquatch.

Been Forever : an update

2010-08-14T20:51:00.001-07:00

It has been such a whirlwind of a summer. Since it is slowly winding down and I am trying really hard to wind stuff up and get things caught up. I thought I would send the before school update.

Ty has done FABULOUS this summer. He didn't qualify for summer school ( boo!) so we decided we would do private therapy until his first surgery of the summer. Of course that never goes to plan and his surgery really messed up the entire month of July and Augusts therapy schedule.

The bonus: we took time off from speech and the toot face is now TALKING. He is doing fabulously well. He picks up 7-8 words A DAY! He is doing really well. Some are not phonetically correct but they are working and functional words.

He received his phenol injections and his tonsils out at the same time in June. Which messed up our casting schedule so we didn't get casts on. I think for summer that works but for winter I would LOVE to see him get casted again.

I am so thankful for Ty and all he is doing. Parenting got HUGELY easier. We hope it continues on the upswing.

The other stuff going on is driving me insane!! Dallas has been sick and he has been in and out of the hospital and them not finding anything. We think it is gal bladder and only have a few more tests before we can finally make them take it out.

We have also been dealing with infertility. 2 years we have tried to get pregnant and have resorted to IUI treatments only to have our meds TRIPLE the cost from our first month so we have had to take a step back. It has been the HARDEST thing for me EVER.

But that is us.

Now I Can Foundation

2010-08-12T12:32:00.000-07:00

I met a neat Mom at the special needs dance class I've been telling you all about. Last night, her husband told me about this amazing therapy. I am basically copying all this from a post on her blog ("kidz" in the side bar) and I hope she doesn't mind.
After I checked this out, I just had to post it. I think so many of our little kiddos could benefit from this.

Also, please check out the "Now I Can" Foundation Website. They need votes to get $100,000 of funding. and believe me they deserve it.

A great new resource.

2010-08-09T12:00:00.000-07:00

I got an e-mail today from Amanda Ellis. She is a board certified music therapist. She works with children and adolescents who have a variety of developmental disabilities. She writes songs to teach kids and help them with specific (non-music) goals. She writes custom songs for children at parents' request, and has a variety of songs for download on her website. They are $1 per download. You can check her out at www.morewithmusic.org. if you are interested. I'll also add it to the resource list in the sidebar.

Good Things.

2010-07-19T14:55:00.000-07:00

Don't you just love it when you stumble across wonderful things? Here are a few I've found lately.AYSO soccer sponsors teams for special needs kids! find out more about it here.

This one is so exciting! A family in Syracuse is teaming up with 'unlimited play' to build a special needs playground there. I don't know about you, but I would drive to Syracuse if it meant that MK could play! Click here and check it out. Be sure to watch the video to see what a special needs playground is and all the great features it has.

The last one doesn't have any website or link, but as our family went to a movie last week, I noticed a sign hanging in the theater. The AMC Loews in Layton has a kids movie once a week for guests with sensory issues. The lights are on, and the volume is low. I suppose you could call the theater to find out more about it. I'm thinking they are on Thursday afternoons, but I don't really remember.

So glad good things are happening in the world for our little ones.

Dance Therapy

2010-07-10T09:35:00.000-07:00

UPDATE:
I just found out that the special needs dance class in Hooper is free after a one time $10 registration fee. Also, they will have individual helpers for every student in the class! Classes will be on Wednesdays at 5pm starting August 4, studio II room B.

Our Condolences.

2010-07-05T07:57:00.000-07:00

I just got an e-mail from Annette, and wanted to let you all know that her father passed away on Saturday afternoon. He was 89 years old. We share our heart felt sympathies with you Annette, and pray for the Lord to be with you.

Dance Therapy

2010-06-24T13:55:00.000-07:00

Just got the following email, thought I'd pass it along:

An all new, Special Needs Dance Class is starting in Hooper!!!
Dance Image Studios is offering dance instruction for ALL special needs children.
Any age, any disability, boys and girls. Everyone is invited!
Classes start July 7th. Call right away!
Janeal Cox 801-985-1586 or email at janco7@msn.com
Hope to see you there!

No, I Haven't Fallen Off The Planet

2010-06-19T14:57:00.000-07:00

I've just been REALLY busy. I started delivering newspapers every morning, and now I've discovered a new meaning of the word "tired". I only THOUGHT I was tired before.

Many exciting things are happening on the homefront here. The biggest news is that my dh finished his PhD in Theoretical Astrophysics! He was BLESSED to get hired as an Assistant Professor at Missouri Western State University. He will be teaching Physics and Astronomy. We are excited (and nervous) about this next step in our lives. We currently live in Utah, so this is going to be a big change for us. My dh is flying out to Missouri the 2nd week in July to find us a place to live. I can't go because I have to work, and we can't afford the airplane tickets anyway. My older boy will be at Scout Camp, so it would just be me, dh, and Marshall, but that is too expensive. DARN! Once we find out where we're going to live, the real work begins! Marshall will be starting Kindergarten out there, and I think he's going to need an aide to work with him. His fine motor skills are still very poor, and he has a lot of trouble with social skills. I try to teach him that he doesn't need to talk to EVERYONE he ever meets. ~Sigh~ It's a slow process.

I get a little overwhelmed when I think about moving to a new state and having 2 kids starting a new school. I'm not sure what I need to do to ensure Marshall gets the services he needs. Utah (and especially our school district) has been one of the WORST places to live when you have a child with Asperger's. He is too smart for the Title I preschool, but not delayed enough for special education services. We had him in an integrated pre-school this year, but he hated it. He was the only kid there who was not wearing diapers. The other kids were mostly working on talking. You can't get Marshall to STOP talking. :) In April I had finally had enough, and just kept him home. It wasn't worth the price I was paying.

I'm not sure if I ever came on here and shared the news, but we did finally get an official diagnosis. He definitely has Asperger's Syndrome. I'm not sure I completely understand what the doctor wrote so I'm copying it here.

Multi-Axial Diagnoses

Axis I 299.80 Asperger Syndrome

300.02 Anxiety

782.00 Sensory Integration Difficulties

Axis II V71.09 No diagnosis

Axis III No known complicating factors

Axis IV Problems with: other psychosocial and environmental problems

Axis V Current GAF- .50

Past Year GAF- Unknown

Does anyone know what that means?

Drama Queen?

2010-06-01T10:40:00.001-07:00

Does anyone else ever feel like other people must think you are a drama queen? No one has ever said this about me but I feel like some people think it. I feel like I am always in recovery from some crisis. People don't understand that even doctor appointments that have become "regular" to us still have the ability to take me out emotionally/physically/ mentally that day. Besides all of the regular money, work, family crap that everyone in the world goes through I feel like I always have extra stress to deal with and extra stressful events to make work.

Some examples: I have taken my son to the ER every 3-4 weeks since April. He has had a broken arm, stitches and he almost lost his teeth (tripped and face planted in driveway). His botox didn't take this last time and they don't know why. His braces have needed to be adjusted because they were giving him sores. He has started to be extra defiant in school. The doctors are now getting worried about him not gaining weight (too skinny). Potty training is not only going badly but has put both JT and me into fits of crying (we have since given up for now). Along with the usual not talking and the difficulties with that.

Now add on the fact that my husband's car has had everything go wrong with it including (but not only) it setting on fire, huge oil leaks, parts needing to be replaced, the computer part of the car (ECU) getting programmed wrong so it won't communicate with his car, etc. And while this is going on my car died and we had to buy a new one. Then this weekend some jerk broke into our garage and stole my car along with my husbands tools and some other things in the garage.

All of this has happened since April. I already felt like when people asked how things were they saw me as some drama queen who made mountains out of molehills. No matter how hard I try, my life always sounds like some sort of melodrama. Is it me? Do I make too big of a deal of things? Does anyone else feel like this?

a picture is worth a thousand words.....

2010-05-26T08:40:00.001-07:00

Look what MK did! 9 feet, and she walked it all by herself!

One of those days.

2010-05-08T13:33:00.000-07:00

Recently, I read a post by Suzanne aka: "Special Needs Mom" (She doesn't post on our site, but she is linked in to our side bar.) She is such a talented writer and puts so beautifully into words all the tender everyday experiences we all share. Her "Bad Mother" post from Feb 16 has really stuck with me. She writes of going to the park with her two girls and having a wonderful day when a 'golden haired girl' interrupts by staring and asking blunt questions about her daughters' disabilities. It was one of those days where she just wasn't in the mood to deal with that kind of thing and after answering numerous questions from the badgering little girl - she told her to 'go away."
Like all of us, I normally try to be polite and positive about MK's situation. There are days when I don't even give it a second thought. But there are also those days where I feel like Suzanne. I just don't want to deal with the staring, the looks, the awkward silences, the bold well intentioned questions. You know....and for those days, I loved Suzanne's post. I smiled and giggled when she divulged like it were a dirty little secret that she'd told that beautiful and whole little golden haired girl to "Go play.....somewhere else."

I guess I'm in a bad mood today. Because today is one of those days where the whole world felt like it was full of golden haired little girls. At A's soccer game this morning, a little boy came and stood in front of MK sitting on the blanket. She was wiggling, and kind of rolling on the ground. Her stiff and jerky movements looking odd and uncomfortable. She was happy. She was playing, and this little boy wandered away from his parents and just stood there staring. I just forced a smile at him and said nothing.
On the way home we stopped at the store. I parked in a disabled spot and got out to grab a shopping cart. It's the only way I can get MK and our new baby in the store at the same time. A man walking out of the store watched with his brow crinkled low on his forehead and his eyes all squinty. I didn't even acknowledge him. It was Walmart, and the day before Mother's day it was packed. I caught a lot of glances from other people. One woman saw me catch her stare and quickly smiled a smile that was kind, but also seemed to hold pity. I kept thinking of the golden haired girl.

I realize that my mood has 100% to do with whether these are good situations for me or not. I admit that I'm sure today only seemed that way because of my mood. People look at people. I look at people all the time. It's not because they have special needs. It's just because they are people. I can't help but wonder though, what the reality of the situation is. How many people really are looking at us because of the disability? How many of those people are thinking kind thoughts versus those who are being judgemental or feeling pitiful or repelled? On one hand I think - people are probably a lot more innocent than I give them credit for. On the other hand, I'm not so sure. Either way. Today - I want to tell them all to "go play.....somewhere else."

NUAP vs. Partners?

2010-04-24T13:47:00.000-07:00

I know there are a few of you whose children have attended the Northern Utah Autism Program (NUAP). Is there anyone who has gone to Partners? We're trying to figure out which is the best option for our son, Tanner. He's been accepted to both so now we have the difficult task of choosing where to send him. It sounds like the main differences between the two programs (which are right next door to each other in the same building) are that NUAP uses Attending programs while Partners is based on Applied Behavioral Analysis, and that Partners is a model school so other educators come in to observe.

If any of you have any suggestions/preferences, we'd love to hear what you have to say. If you have personal experiences to share, please do. Or, if you've heard things from others about either of these programs, we'd love to hear them too.

This Email was sent to me and I thought of all of you.

2010-04-19T20:57:00.001-07:00

Sometimes we wonder, "What did I do to deserve this?" or "Why did God have to do this to me?" Here is a wonderful explanation! A daughter is telling her Mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away.

Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, "Absolutely Mom, I love your cake."

"Here, have some cooking oil," her Mother offers.

"Yuck" says her daughter.

"How about a couple raw eggs?" "Gross, Mom!"

"Would you like some flour then? Or maybe baking soda?"

"Mom, those are all yucky!"

To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake! "

God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!

God is crazy about you. He sends you flowers every spring and a sunrise every morning.

Whenever you want to talk, He'll listen. He can live anywhere in the universe, and He chose your heart.

Life may not be the party we hoped for, but while we are here we might as well dance..

So what are you Ladies waiting for??? Get up and Dance!

PECS

2010-04-17T20:02:00.000-07:00

I don't mean to sound needy...But that I am! Does anyone own the "Boardmaker" software? I have a lot of PECS pics so far, but I have some questions before I make the $300 plunge!

Autism

2010-04-15T11:43:00.001-07:00

It's been so long since I posted on here!!! I hope all is well with all of you moms!!

I think Autism is over-running my life right now. My son Trevor, who just turned 8 last week, has been struggling for a few months now and I think I have just been a tad overwhelmed. Between him and then our youngest Josh (and his list of issues) I have been extremely busy.

One of our biggest problems I am dealing with is doing homework with Trevor. He puts up a huge fight to even get him sitting down. Then he complains its too hard, too much, too late... ect. When he does finally start doing it, he is very careless and just writes whatever down to say he did it. We know he can do math pretty good, so it is sooo frustrating for us to have to constantly correct him and tell him to focus and do it right.

We have him seeing a therapist through Weber Human Services and we are in the process of getting a Med evaluation done with Dr. Christiansen... the psychologist who diagnosed him with the NUAP. The meds he is on now are not helping and we need something to counteract his hyper activity. He daydreams a lot and it also causes problems in school.

So... does anyone have any advice on what to do about the homework problem? Have you done something that does or does not work? Any suggestions are much appreciated!!!

Parenthood

2010-04-12T12:49:00.000-07:00

If you haven't seen this show yet, it's well worth a shot. One of the storylines follows two parents learning their son has Aspergers and the process they go through. I watched this episode today... this 2 minute scene made me bawl like a baby. Anyone else ever felt like this?

Tanner's Been Diagnosed

2010-04-09T14:33:00.000-07:00

We met with the program director at NUAP (Northern Utah Autism Program) yesterday along with the child psychiatrist, Dr. Karen Christiansen. After meeting with them and them observing Tanner, they've pretty much diagnosed Tanner to have PDD-NOS, just like we thought. Dr. Christiansen said he can also be considered Highly Functioning Autistic and that he has some Asperger's characteristics. As he continues to get more language, he will probably show those traits more and more, but he will never be considered as having Asperger's just because one of the criteria for that is that there is no language delay, and that's one of Tanner's greatest struggles.

You can read my husband's post about it here.

I have mixed feelings about the whole thing...the finality of having a diagnosis. Not that it changes anything, really. Oh well, I'm sure that as things sink in a little more I'll be better able to process everything.

USDB Deaf Preschool- Ogden

2010-04-02T08:22:00.000-07:00

Does anybody else have a child attending the preschool at Utah School for the Deaf (Ogden campus)? I have some questions that can't be addressed with the staff.

Learning Disorders

2010-04-02T04:51:00.000-07:00

We've finally started making headway on ways to help Jaylee at school. They've finally narrowed down her learning disabilities. She has Auditory Processing Disorder and Visual Processing Disorder. Both are brain dysfunctions, most likely due to the brain damage she received the first few years of her life. We're still learning about them... but basically APD means she can't process what she's hearing correctly.. and AVP means her actual site is fine, but her brain doesn't SEE what her eyes do... therefore, not processing it. It's starting to make a lot of sense why she has an aversion to reading, math, reading stories aloud with me, etc.

One interesting sidenote, they said with AVP you generally rely on one side of your brain and when you try to access the other side your brain goes all wiggy. We've noticed it with math, especially following left to right. If a math problem is horizontal Jaylee doesn't struggle AS much... but you put the same math problem in front of her vertically and she has a complete meltdown. They said that the combination of VPD and APD creates a really rough environment for learning in school.... generally the children check out because their brain is over-stimluated, working overtime trying just to make sense of what they are hearing AND seeing. Which means she exhibits signs of ADHD. Interesting, eh? They don't think she has ADHD afterall, but that once she can hone in on coping strategies in the classroom a lot of her behavior issues will decrease. Interesting.

I guess there are a lot of disorders/layers within VPD and APD, but at least know they know what they are dealing with we can start to make modifications in the classroom or get her specific therapy to help her along. Do any of you know anything about either of these disorders?

Dr. Gooch

2010-03-23T11:57:00.000-07:00

It has been suggested to us that we see about getting into Dr. Gooch at PCMC for some
spasticity treatment. From what I know so far it is using a form Botox to relax muscle. Do any of you know anything about this or Dr. Gooch?
I am a bit nervous to go down this road with Bree because I am not sure what the long term effects are. But we really need to try something because she is has kinda taken a few steps backward due to her growing and her muscles not keeping up with the bones. She is in constant pain and we are at a loss. Any thoughts?

A different kind of question

2010-03-16T12:19:00.001-07:00

I have a dentist appointment next month and it got me thinking about taking Tanner to the dentist. We haven't taken him yet and I'm worried about it. He has a lot of sensory issues when we have to do most "grooming" things to him, like cutting his hair, clipping his nails, and brushing his hair. Brushing his teeth causes a daily conflict and cutting his hair is a huge ordeal. He freaks out from the clippers. We've tried cutting his hair ourselves, taking him to the barber, and taking him to hair cutters specific for kids. I think that his reaction to going to the dentist is going to be just as dramatic/traumatic.

So, here's my question: are there dentists who specialize in dealing with patients with illnesses or other problems, pediatric or otherwise? If so, do any of you know of any in the Utah/Wasatch Front area? Also, what if Tanner has cavities? Do dentists have ways of taking care of them differently than how they would fix them for others?

If any of you have dealt with this before, I welcome any suggestions or comments you may have that can help me out.

Question

2010-03-12T11:50:00.000-08:00

Hey ladies, I haven't posted in a long time on this blog. Our focus has been shifted to my husband for the last few months, he's been battling small bowel cancer. Things are looking a little on the up and up in that department and I've been able to shift more of my attention back on my girls medical/therapeutic needs.

Reagan, my 2.5 year old, is doing really well. Her microcephaly is still present but it seems the main thing it has effected is her balance... which could also be because of the mild CP. At any rate, right at this moment we are very happy with her progress. She's eating, saying 2 word sentences, walking, and identifying objects. Hurray. We know success is volatile with kids, but we're very happy she's in a good place right now -especially with our extenuating family circumstances.

Jaylee, my 7 year old, is the one I need your advice about. They have retested her hearing and she qualifies for a personal FM system, which I think will be of immense help. I've joined an ADHD support group here in Atlanta and have been getting great ideas for positive reenforcement, organization skills, and daily functionality (if any of you are interested I'd be happy to post). However, the common thread that has occured at these meetings is the difference between ADHD and LD's. OR the fact that they can both exists and exacerbate the other. Jaylee is struggling in school, we know she has a cognitive delay, but I'm concerned that that's not the only issue. She eventually learns the subject, albiet it takes her 3 months, she eventually grasps. However, that 3 month gap is really effecting her confidence and such at school. She also struggles with social cues. Sooo.... we're doing our best to read about ADHD and social helps, we're also wanting to get her tested for any LD's. We've been working with the school system regarding her cognitive delay and it's just getting nowhere.

There is a wonderful program in Atlanta called "Beyond Words." It works with the kids individually and in group therapy to find good coping strategies, teaches them social cues, and helps us in our daily parenting to reenforce those coping mechanisms. Plus, it's legal health documents that will help us with our fight to get classroom modifications at school.

Here's the kicker. They don't take insurance and just the evaluation alone is $560. That's not including therapy or family sessions or anything on a routine basis. They have a fantastic summer day camp for ADHD/Autistic/ADD/PDD but for every two weeks it's $860. Ouch.

So, my fellow Tulip Moms, do you know of any financial grants out there that we could apply for? Any lottery numbers you feel good about? (haha) Both my husband and I feel like Jaylee (and by extension, our family) would greatly benefit. Do you know of any savvy ways to talk to the programs about financial plans? Or proposing payments? I haven't hit the "we don't take insurance" or the "insurance doesn't cover this" bump like a lot of you have in the past... this is our first time..... help?!?!

Hi Moms~ A Clay update

2010-03-11T16:39:00.000-08:00

It has been forever since I posted but I want all of you to know that I think of you fondly. I hope you are all finding joy and solutions for your family concerns. We recently passed the 40th week post op with Clay...hip, hip, hooray! He has basically regained everything he lost from the medical crises. His weight is now back at 80 pounds after dropping to 63 or so pounds in July/August. He has grown approximately 3" of bone length (documented). He will celebrate his 25th birthday on May 19. He received a new power wheelchair a couple of weeks ago. We hope to attain a new 'hospital type' bed in the coming months called a sleep safe bed. I'll try to post the link for those interested in a very safe sleeping environment. We battled trying to keep him in a standard hospital bed during the approximate five months he was inpatient. The feeding pump setup is going well and we have adapted accordingly. We are back with using the pump via the Mickey gastrostomy button, able to discontinue with the jejeunostomy placement last August. All in all things are going well and we are amazingly blessed that Clay survived this last year. God still has greater plans than any of us realize in a given moment. Keep your seat belts fastened and hold tight to your faith. You are all stronger than you understand! I love you all~

www.sleepsafebed.com

Over at my blog......a Giveaway

2010-03-09T21:33:00.001-08:00

After reviewing the Voice4u program for the Iphone/Ipad/Itouch I was offered to give away one to a lucky reader of our blog!.

Yep!

Those of you who are DYING to try this out and have your kid FINALLY say something to you, this is YOUR lucky day.

The potential of this APP is amazing. It can take your non verbal or poor speaking child to the next level. I can not WAIT for the IPAD to come out so I can try it on there.

Major Bonus in this application is the ability to upload your own photos and to use your own voice.

So the rules of entry:

1st entry You must leave a comment telling why you want to try this application,

2nd entry follow me on twitter and leave a comment here with your twitter name

3rd entry Tweet or face book the contest!

* and YES you can get an extra bonus entry for Blogging and sending more people here!*

Winners will be selected on Friday evening and chosen from Random.org.

Please make sure a valid email is listed so that we can get in touch with you win!

And please leave a comment separately for everything you do... each comment is a entry!

Come on over to my blog@ prematuritywithlove.blogspot.com

I can feel it in the air....

2010-03-06T22:12:00.000-08:00

Don't you hate it when you can feel a "bad attitude" coming on? I used to have a depressed week every month. Since I have started school (7 months ago) I have only had about 3 bad days. But now I feel one coming on. I suppose it isn't coming on, it is here and I am just fighting it harder than I used to.

One of the big contributors is my Human Development class. It is a super interesting class and I need to take it for my major. It gets a little depressing though when I hear about all of the things that JT should be doing and what I have already missed out on. It certainly doesn't help that I am the only mother except the professor and so she askes me a lot of questions. She knows JT has CP and yet she still asks questions like, "Isn't it wonderful the first moments after giving birth and they lay the baby on your chest and you just have that bonding moment?" Do you really want me to answer that? I had to BEG my doctor to let me touch him before he was rushed away. I spent the first week unable to hold him and trying to not get attached because everyone thought he wouldn't live. I didn't get to have him lay against my chest until he was a month old. I usually just say something like, "It was different for me" or something like that.

So here she is asking me questions when I have nothing good contribute. I have tried not looking at her but she just stares at me while she "asks the class" and then calls on me specifically to give examples of whatever we are talking about even if I am not looking at her.

So it has been annoying but not terrible. Than we touched slightly on genetic defects and she said things that really made me upset. Namely, we were talking about microcephaly and she said that in about 95% of these cases the mother did drugs or drank while she was pregnant and that when this is found in a child they look to the mother to find out what she did. When I said that there are cases when they don't know what caused it and it wasn't something that the mother did she just said, "Not really, for the most part it is something the mother did." Thanks lady, now whenever these kids meet someone whose child has microcephaly they will think that it is the mother's fault. They will only think of the 95%, not the 5%.

So that was the 2nd really frustrating thing about the class. Now we are learning about toddlers. I love 3 year olds. They have always been my favorites because of the funny things they say and crazy things that they think up. Since he turned 3 the fact that I don't get to hear my son's thoughts has been so disappointing. I have been looking forward to this stage since I was 13 years old (since my sister was that age and I found how fun it was) and now I am missing out on my favorite part.

So I am already feeling bummed out in class and avoiding her gaze but she is talking about strange requests children make like her son saying, "Come out moon!" in the middle of the day. So of course she asks if I have any examples with my son. I say, "Not really. He doesn't talk." And she comes back with, "I know, my son doesn't really talk either."

What? Are you insane?! No, my son DOESN'T TALK! I waited 3 1/2 years for him to call me "Ma". He says ma, da, go, and ho. Don't tell me you understand because your son only speaks in 3 word sentances. Don't tell me you understand when your son not only speaks those 3 word sentances in English but he says them in Chinese too! Than she goes on to complain that last week at her son's 3rd birthday party she was "so embarrassed" because her son's friends are all talking in regular sentances and he is still using shortened sentances.

Embarrassed. I wanted to slap her. What I wouldn't give to have my son do that. She also informed me that her brother was born with CP but grew out of it. Huh? Does that happen? I don't see my son "growing out" of his brain damage. Perhaps he had a super mild case and just ended up being kind of clumsy, I have heard of that happening.

The thing is that she is a really nice person, just totally...oblivious. I go back and forth, do I write her an e-mail or just wait it out? There are only 4 more weeks of class, why make a fuss? We will be done with the toddler stage soon and then she will stop asking me all of these heart wrenching questions. *sigh* What do you guys think? Sorry this is a bummer post. On the bright side, isn't my son adorable? (He is helping with my husband's motor build)

Where has the time gone?

2010-03-04T12:25:00.000-08:00

I can't believe how long it has been since I posted on here!

A brief summary of our crazy life is.... our 7 (almost 8 now) year old son, Trevor, who has autism, has been struggling for several months. We are in the process of making changes at home and school to help get things back under control. For so long he was doing so well and it seemed like we had a son 'with a few autistic traits'. Now it seems like we have a son with autism who acts normal sometimes. It has been a very heart wrenching thing to go through for me. I have come up with some ideas, his resource teacher has as well and we are implementing them right now. He is also starting private therapy to help as well. It's been a long few months with him but I do feel like we can get things under control with some effort.

Our youngest Josh (over 2 1/2 now) has also had a long and rough winter. He has battled H1N1 and RSV in October and had constant ear infections since then. He had tubes placed as well as tonsils and adenoids out on Feb. 11th. He is doing well now and we hope to keep his health good. He has been kept in seclusion since october and we hope to get back out in the world soon. He has been put on 24/7 feeds because of severe reflux and vomiting. He is gaining weight for the most part and doing remarkable on the change in feedings. It makes it a little tricky to have an active 2 1/2 year old on a feeding pump all the time, but he has made the transition with no problems. He is such an amazing little boy and such a trooper.

We have gotten pretty much all of Josh's diagnosis down now and it is quite the list. Microcephaly, Brachycephaly, Dyspraxia, Speech Apraxia, Failure to Thrive (resulting in G-tube placement), Coronal Synostosis, Motor Feeding Delay, Sensory Processing Disorder, and a Seizure Disorder. Phew! He has come a long way already and is doing some good things.

If any of you have any experience with any of those disorders... feel free to give advice. It's been a long 2 years getting to this point and I am always looking for help, guidance and advice.

I hope all is well with all of you!!!

Quick question...

2010-02-20T21:52:00.000-08:00

I am thinking about taking Jonah to see Dr. Sara Winters. She is a "special needs" doc. in the Salt Lake area. I was wondering if anyone has ever gone to her, or heard anything. Would love to hear some feedback. I wish you all a wonderful week.

Undiagnosed PDD-NOS

2010-02-08T09:34:00.000-08:00

Hi, my name is Brooke and I'm a new contributor to Thru the Tulips. I learned about this blog through early intervention and another mom I met there, Erin, who is also a contributor.

I have a three-year-old (well, he will be next week!!!) named Tanner who is a sprightly little boy with undiagnosed PDD-NOS.

We first thought that something might be "wrong" with him when we went to his 18-month checkup. You know how you're asked all the milestone questions? Well, at that time, Tanner "should" have had about 10 words in his vocabulary and he didn't have any. He was a bit late in reaching most of his physical milestones as well, and we (and our pediatrician) attributed it to Tanner having been born with a club foot. When we told the doc that Tanner wasn't talking yet, he wanted us to watch him and we'd bring it up at the 2-year checkup.

Six months passed and we scheduled another checkup. At this visit, Tanner should have had 20 words, and he only had about five. Our pediatrician asked us a few more questions and referred us to early intervention for speech therapy services and also encouraged us to look into getting Tanner evaluated for autism. We started early intervention a month after Tanner's second birthday.

We only saw little progress in the following months. We were able to teach Tanner a little bit of sign language so we could start communicating with him, but we were frustrated with his seemingly lack of progress. Finally, this last October, Tanner's vocabulary just exploded. He started saying words and slowly stopped using the signs that he now has words for. He has a lot of new words and is starting to speak three-word sentences. He still uses a lot of gibberish, but we're in the stage where at least Mom and Dad can understand him most of the time.

At around that same time, we scheduled a meeting with a developmental pediatrician to start the process of having him evaluated for autism. After our visit, the pediatrician felt that Tanner was exhibiting behaviors closer to Pervasive Developmental Disorder rather than actual autism. She noted some of Tanner's quirks, like lining up his toys rather than playing with them the way they're supposed to be played with.

Tanner is also very particular about the order and placement of things. My husband wrote a good example of this on our personal blog.

We saw a psychologist in November and after the initial visit, she had the same impression as the developmental pediatrician - that Tanner probably has PDD (most likely PDD-NOS) rather than autism. Unfortunately, she wasn't covered by our insurance, so we didn't meet with her for the two succeeding visits she wanted before making a diagnosis.

It's been a long, hard road raising a little boy with these developmental challenges, and I'm sure they're nothing compared to what some of you are faced with. Our game plan for now is to wait until next month to have him evaluated by the Northern Utah Autism Program. Tanner was able to qualify for preschool services through early intervention, and we're hopeful that he'll continue making progress with his speech with their help.

For now, we just take one day at a time and do our best to teach him what he needs to know. I struggle at times, worrying what people think of him, our family and friends. I worry about him growing up and what his life will be like. If kids will pick on him or if he will be left out because he's "different." I want him to experience everything possible. I don't want him to be at any disadvantage. It's a constant adjustment, realizing that I have an atypical child. But, I'm glad that he's mine. He makes me laugh everyday and I look forward to what's to come. Knowing that he struggles with different things makes me happier when he makes little strides in his progress. If he were "normal," I might not acknowledge his accomplishments as much as I do now. He forces me to see things that I otherwise may not see. And I'm glad for that.

My new dilemma.....

2010-01-31T11:07:00.001-08:00

I have a question for you all. I'm hoping you can help me find a solution to my new dilemma. MK uses a wheelchair as you all know. She cannot stand up or walk on her own, but she can hold onto things fairly well. Now that I've got the new baby, I don't know how to take both of them somewhere by myself. I can't very well push a wheelchair and carry a baby carrier by myself. So, I'm trying to come up with ideas. I tried to ask my kids. A said "that's a tough one." and walked away. MK said "I will carry baby!" (bless her heart!)

I have thought about getting one of the sit and stand strollers that have a little platform and seat attached to the back. I can snap the baby's carseat in like a regular stroller, and I think MK might be able to hold on and sit on the back...though if she can, she wouldn't be able to do it for a very long time.

I've also thought about a double stroller. Maybe even a double jogging stroller. But MK is starting to get a little big for strollers (she's almost 5) and the baby is very small.... I'm not sure how that would work. And MK can't leave the baby alone to save her life, so I'm not sure I want the baby with in her reach.

I've thought about getting one of those baby carriers that you strap to yourself so I could push the wheelchair. But then I'd have to take the baby out of the carseat every time.

So far, I've just avoided having to take them anywhere together by myself. But, that can't go on forever. Have any of you have experience with any of these scenarios? Do any of you have any other ideas?

To be a Sunbeam? Or not to be a Sunbeam? That is the question.

2010-01-17T21:47:00.000-08:00

I have been trying to decide if JT should move out of the nursery into the 3 year old class in church. I would really like to keep him with kids his own age. He has come so far. He is the type of kid who wants to move on from "baby" things before he should. For instance, he is a super messy eater but try as a might I can't get him to wear a bib anymore. He makes it clear that feels like he is too big.

But he doesn't fit into the new class very well. The oldest girl has caught on that he is different somehow. She asks about his legs. It is only a matter of time before the other kids wonder too and they begin to think it is weird that he doesn't talk. That's okay. We will have to do that no matter what at some time or another. But in class they do a lot of talking games. They toss a ball around and ask the kid that catches it a question. He can't really participate. Even if he managed to get out a sign without my help they wouldn't know what it means.

Today was the worst. I have to stay with him the whole time or he cries bloody murder and gets so worked up it even takes me 10 minutes to calm him. So there we are during singing time. JT loves music and singing. He joined in for the first time. A long drawn out shriek drowned out all other voices. The piano struggled to be heard over the unmelodious wailing emanating from my son. He loved it! He sang louder. He tried to continue singing after the song ended.

It was cute in a way that hurt my heart. I wanted it to just be cute (like it is at home) but he sounded so disrupting. He sounded like a bad kid. He's not a bad kid, what he was doing wasn't bad it was wonderful...but disruptive.

He has a really hard time sitting still in his seat. He is always turning around and standing up. Many kids that age have a hard time with this but they will sit after being told. He has a bit of a defiant streak.

Besides all of this, he is tired (we have 1 pm church) and after me putting him in his seat over and over again he is getting angry with me and begins hitting me. Today we left the class and I put him in time out on the stairs in the hall twice.

I just want to go to church. For the past 4 years I have not gone to church without spending the whole time wrangling my son or crying hysterically. I just want to go to an adult class. I want to know my son is with people who care for him. I want to know he is not being ignored (which is easy to do with someone you can't communicate with). I want to know he is being a good boy even though he will need help to be. This is made more difficult because my husband is not the same religion as I am and so he is not there to help.

All of this adds up to me out in the hall with him crying, no bawling uncontrollably, which is making JT upset and so he is worried and bawling too. It sure felt like the end of my rope. Just then the Primary President walked by. We had a good talk.

Next week I will come with a letter for all the teachers and the Primary workers explaining JT so they will be understanding and patient with us. The rest is up to me. I would love for him to go to his class with the kids his age but I don't think he can do it himself yet. I am thinking of having a helper assigned to him. I have heard some of you talk about it before but I always hoped I could help him make the transition without it (just another thing that makes us "abnormal" you know?)

I think I like that better than sometimes taking him to Primary, sometimes to nursery. I don't know, he may not be ready to sit still that long. But how many 3 year olds are? *sigh* I don't know. She said I could be as creative as I wanted to get this figured out. Just let her know and she will work around what I come up with. I just feel confused. It has been a long time since I have cried about JT's situation but when things change I feel like it is just as hard for me to transition as it is for him. Maybe I am too soft. I would love to charge in there and lay down what I need for my son but I can't figure out what that is.

A long time

2010-01-08T13:08:00.000-08:00

Hello Tulips. It has been such a long time since I have posted or commented here. I follow you all the time and read every post. You are all so amazing, I feel as though I have little to offer any of you. Truly this is such an amazing place of strength and wisdom!

I thought since my little Bree is turning 3 next month I would put up a little update. When I started blogging here she was almost 18 months. She was not walking, crawling, rolling, or showing any signs of verbal communication. Today, thanks to wonderful Doctors, therapists and teachers she is doing so great! She can say about 75 words-that other people can understand and putting 2 and 3 words together to make a sentence. I can understand 95% of what she says- so I guess her word base is a lot bigger if you count what I can get. She can not only walk but run and jump )with the help of a DAFO). We are still working on so many things, but really she has come so much further than we were told she could/would.

I just wanted to say THANK YOU to all of you wonderful parents that post here. I learn so much from you, and you are all so truly amazing!

Breakthrough!!

2010-01-03T14:34:00.000-08:00

I know it has been awhile since I posted. Life has been crazy. I am going back to school to become an OT. At the same time, JT is going to Early Intervention Preschool. He loves it. His teachers love him even though he likes to be the class clown (not always a teacher favorite). They could not believe that his brain damage is as extensive as it is. In fact, she said something very poignant, "Science has given him 25% of his brain, but God has obviously given him a much larger percent." Just how I have always felt. Science can give us a number but they have no idea the number our child has been given by their Heavenly Father.

This kind of brings me to our big news. For months I have been telling myself and others that I have done everything that I could to get JT to talk but I cannot make him do it. Watching Christmas Carol a month ago, an old idea hit me a new way. Bob Cratchit says of Tiny Tim, "He said he hoped people would see him (at church) because it might be good for them to remember on Christmas Day who it was that made lame beggars walk and blind men see." I just started crying.

I do not know what God has planned for JT but I have not done everything before I focus on getting help from Him. I am not talking just having it in my prayers, that was already there. Since I was out of school I focused on doing what my religion preaches. I also told my Heavenly Father that I understood if he had other plans but I have worked so hard to get JT to talk and I know I can not make him do it. But I also know that He has worked many miracles everyday and He has worked many miracles with JT but I selfishly would like another. All I wanted for Christmas was to hear my son speak.

It didn't happen before Christmas but a few days after he pointed at a picture of Santa and said, "HO!" I asked him to say it again but instead of giving me a defeated look as usual, he looked right at me and said, "HHHO!" I couldn't believe it! Then I asked him the question I ask everyday. "Who am I?" Instead of signing mom he said, "Mmmmma!" I cried.

It is still hard for him to get out the first sound so it is drawn out but he still says it. And of course family and friends have come up with all sorts of funny little things teasing the fact that his two words are ma and ho. ("The only two words a pimp needs to know "Ma' Ho!" etc) But I am able to laugh along with everything because it doesn't matter, my son can talk.

I hope to be able to tell you guys that he is saying more soon but for now I feel blessed. Happy New Year!

Good News!

2010-01-01T15:55:00.000-08:00

Just wanted to make the big announcement here: I had my baby! We actually made it to 37 1/2 weeks this time! She is our heavy weight coming in at 6lbs 3 oz. and 18 inches long. She came via c-section on Dec 13.

We had a magnesium sulfate treatment before hand which is supposed to help to prevent cerebral palsy. It's a 12 hour IV treatment that is usually only done in cases of extreme prematurity. But, the doctor said even though it might only help our situation by only a small percentage if at all, the insurance would still pay for it, so we decided to go ahead and do it anyway. It can make you really sick I guess. But it just gave me some major hot flashes and made me very sleepy.

Our new little one has had a major bout with jaundice. (Who on this blog has NOT had to deal with jaundice?) She has been on the lights twice now. When we take her off, her levels go back up again. We've been grateful to have her at home with it all though. Especially at Christmas time. The doctor took her off the lights again yesterday and said we could send the lights back. But I'm holding onto them for another day or two just to be sure. :)

It would seem that with a 24 weeker turned "angel", a 26 weeker turned "miracle" and a 36 weeker turned "CP blessing" under my belt that a little jaundice would be nothing. To the contrary. I think it's all turned me into a paranoid mother. I'm not used to things 'going well'. This jaundice thing that just won't seem to go away has been draining emotionally, and the regular ups and downs of a newborn have exhausted me physically. One day ..... I'll sleep again. In the meantime, I'm hanging in there. And grateful grateful grateful for my little family and the blessings of all our adventures. Hope you all have had wonderful holidays!

Missing in Action

2009-12-29T22:01:00.000-08:00

Christmas has been nuts this year. Not a moment to savor the season for us. I got a part time seasonal job that turned into full time seasonal that turned into thanks for bailing us out we don't want you any more.

In the midst of that My grandpa passed and a trip to Orangeville Utah we went. It was a wonderful services and we have photos on my blog. We are glad to have that part over with. Christmas was good otherwise.

Now on the real life.... Hubby got a great job offer. Will help us out tremendously but I don't want to see him sad. I am hoping it is just temporary and will help us just get back on our feet. And get us a vacation together....

Tyler is doing well. We did phenol injections ( more about that later) and he is doing FABULOUS!

If You are interested...

2009-12-14T09:43:00.000-08:00

My friend is doing this wonderful gift for a family who might be interested...

I am giving away a free shoot to a family/person who really needs it. It will be a regular shoot, plus 20 photos at high resolution on a CD. This will be going to a family in need and who you think deserves it above anyone else. If you have a candidate for this shoot email me (littlemischiefsstudios@yahoo.com) why you think that they deserve this shoot and on January 17 2010 I will be announcing the winner. This is for anyone in the entire state of Utah. Please try to think about someone who may really need this.

littlemischiefsstudios.com
littlemislchiefsstudios.blogspot.com

Fight for Preemies

2009-11-17T21:52:00.000-08:00

November 17th is prematurity awareness day. For the month of November we have been blogging our journey with prematurity and blogging for awareness. The theme of the March of Dimes this year is one that I can't help but be passionate about. This year they are using the phrase "Fight, because Babies shouldn't have to!"

I fight because Tyler and millions of other babies shouldn't have to.

Prematurity is the leading cause of Death of American newborns. Those who do survive often have life long challenges.

They fight everyday.

Tyler was born at 25 weeks and 3 days into my pregnancy.

94 days before he was suppose to. That means he fought for 94 days to live so that we could take him home. But the fighting hasn't stopped since.

He fought through a Patent Ductus Arteriosis, Grade 3 and 4 brain bleeds, Chronic lung disease, Retinopathy of prematurity, PVL, Cerebral palsy, hydrocephalus and craniosynostosis. He has been shunted, endured countless hours of therapy, bracing, brain surgeries, heart surgery, Skull reconstructions and low vision. All because he has had to fight. All because he came 94 days before he was suppose to.

I fight because every day we struggle with food, sensory processing, cerebral palsy, high muscle tone, no words. Every day I fight to help him lead a life that is less challenging. Everyday I try to do one thing that would make his world easier.

Everyday I try to tell our story so that ONE mom never has to feel the guilt I feel for not making it those 94 MORE days.

I fight so no mother has to wonder what she did to hurt her baby.

I fight so no mother has to question whether support should be withheld.
I fight to get accommodations made so that Tyler can be a participant in EVERY activity!

I fight because Tyler can't.

He has his own battle to fight. He is a hero. He is fighting every day. He attends those therapies that we take him to, he listens day in and day out at the boring letters and words he hears trying to get him to speak. He fights everyday to put one foot in front of the other with out falling, all because those 94 days he came to early left him with Cerebral Palsy. Everyday he fights.

I fight to help others understand that we need accommodations made so he can enjoy life to the fullest. I fight to find ways to help his processing disorder be a happy place instead of a lonely one.

I fight because of EVERY MEDICAL ADVANCE and ever MODERN DAY MIRACLES we can't figure out a way to keep a women pregnant LONG enough to save these babies from disability and death.

We have put a man on the moon for Pete' sake. We have found water on the moon. We are transplanting organs into children and adults, yet we STILL can't find a way for a woman to give her child a FULL 40 weeks of pregnancy to SAVE HER CHILD from a life of disability.

I fight because I love a preemie.

I fight because he is mine. And he deserved nine months. And I keep fighting because he deserves the best.

I fight because I want my next child to have NINE MONTHS

I fight because I am raising a miracle.

I fight, so he doesn't have to!

We fight so THEY don't have to.

Please, support us in your blogging and face book status and twitter messages. Fight4preemie so they don't have to! We would especially like to see our family out there showing their support for the Miracle that happened in their life on Sept.21st and who every single day shows courage to be the best Tyler he can be!

FIGHT....... Because they can't

* this was a repost from my blog, I haven't been around much but have read. We have a few things coming up that I can't wait to share and hope to get some input from the lovely ladies we have on here! Thanks for reading, sorry if the photos are to big!*

untitled

2009-11-16T15:18:00.001-08:00

My life this year has been in a constant state of chaos in stasis and right now, I see no end to it.

I just met with my school's SLP, whom I practically had to beg to evaluate my little girl. Finally, a full 45+ days after the fact, today I was informed that her performance is at the 1st percentile.

At my IEP ammendment meeting, my 2nd grade teacher was in attendance as was the assistant principal; both were present at the initial IEP meeting back in September. You would not believe how quickly one's hackles can be raised upon hearing the insensitive words of an uninformed AP.

For instance, during our conversation, these school professionals said things like "oh well sounds like our school is not a good match for your child"... and "maybe we should write a safety goal.. in case you change schools or something".. and at the beginning of the school year, my school virtually told me that a 1:1 aide was not an option for my child. And yet today, the AP told me that without medical documentation or IQ testing-- or the fact that I have chosen not to share this information with them- that they cannot provide additional services. I responded saying that I would gladly share my recent psychological testing if they would provide an aide, but that I had already submitted copies of testing that documented a need for an aide. I also bluntly told them that I saw no reason they needed to have access to IQ tests if they weren't even going to try to meet the needs of my child.

You would not believe how irritated I was to watch an SLP, AP, and regular teacher talk themselves in circles. Interestingly and totally off topic, my SLP informed me that she always wanted to work in the NICU. And yet when we started talking about my daughter and her syndrome, her words were "yeah and she has Velo- car... whatever its called syndrome." I was a bit put off by her insensitivity.

But. No matter. I guess I will start making plans to change schools. Whats a littlemor chaos?

SOS

2009-11-10T21:28:00.000-08:00

It has been recomended that J starts wearing a helmet! I am such a mess about it. He needs it in hopes to prevent all the bruising that is occuring due to his head banging. Does anyone know where I could find one that would fit a baby. He has such a small head a normal toddler helmet is just too big...let me know what you know. Thanks Ladies..

Short and sweet

2009-10-25T22:43:00.000-07:00

I am really tired of being house bound!
There was an excellent program on Epilepsy featured on 60 minutes; a weekly news program in the US.See link!

Autism Poem

2009-10-22T19:19:00.000-07:00

I found this poem today and posted it on my personal blog... but I thought you guys would enjoy it too.

If you are interested... check out my blog at:

www.christensenchaos.blogspot.com

QUESTION...

2009-10-21T20:56:00.000-07:00

The fact that no one has reponded to Melissa post worries me. Where is everyone? I hope doing well and staying out of hospitals! I hope all are enjoying the beautiful fall colors that are surrounding, and getting the chance to crunch some leaves.

I come to you with a serious issue that has me worried. MyJonah has a chronic lung disaes called non CF-Bronchiectasis. If you are familiar with CF its the lung part of the disease that Jonah has. Anyways, on Saturday Jonah was sitting at his high chair and I was sitting kiddy corner at the kitchen table. I noticed he stopped drumming with his rattle and I looked up at him and saw his eyes roll to the back of his head. Then he looked normal again. Since Sat this has happened another 2 time. I didn't think much of it because he has been head banging so much I thought maybe well, I dont know what I thought. Last night I was serving dinner and my husband asked why J was doing that and I dropped the fork I was holding to run to see if J was still doing it. I never mentioned it to my husband before that because I thought it wasnt a big deal. But once my husband saw it , it validated things I was thinking and I imedietly called the home health nurse. SHe came by this morning and of course Jonah did not do it for her, but she said that it is deffinately neurilogical. She thinks he is having seizures. Im kinda freeked! Both of his drs have called to schedual an EEG, now we are waiting to hear back from that department. Has any of your kids ever had a seizure like this, where they just go into a daze then the eyes roll back then they come back too? He does not shake or anything like that. I am so worried. Please let me know if any of this might be familiar to you. I really hope he is not seizing now. How much more can one mom take?

Are we all this busy??

2009-10-06T21:29:00.001-07:00

I haven't posted on here in a really long time. It has been a wild and crazy few months for us. I am wondering how many of you are feeling like that too?

My family is doing good. Josh has been keeping me on my toes. We have several appointments going on in addition to all his therapy. Then you add in his G-tube placement at the beginning of summer, with all the complications we had.... and here we are 4 months later! Our most concerning problem right now is Josh's lack of sleep. We saw the great Dr. Pfeffer a couple weeks ago and are waiting for a sleep study to be done. I am very tired since he sleeps about 1-2 hour stretches.... it's awful. He moans, whines, talks.... ect. So I hope to get to the bottom of that soon.

I really hope all is well with all of you! I have some of you ladies' personal blogs that I follow, so I know what some of you have been up to. But not everyone. I really hope that you are doing well.

answers about cord blood.

2009-10-06T07:40:00.000-07:00

Yesterday we visited the neurosciences clinic at Primary Children's. Our regular Neurologist at Primary's referred us there when we asked her how to find out current and accurate information on the use of umbilical cord blood in treating cerebral palsy.
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!

Been Awhile...

2009-09-26T10:51:00.000-07:00

Hey Ladies. Looks like we're all resurfacing after a long summer. It's nice to hear from you again! Since I last posted my family has relocated to Atlanta, gotten settled, and started school. Overall we've had great experiences here and can't complain. Unfortunately the Early Intervention program here in GA is lacking. We had a discussion about this I think back in June. R is only allowed one therapist at a time, they evaluate her and decide her "primary need" and that is the therapy we receive. We can request for supplemental therapy if she qualifies for other services, but it will all need to be paid out of pocket and even then they will only provide it once a month.

Right now R's 'primary need' is Physical Therapy and her therapy will begin next Wednesday (yes, it's taken over 3 months to get services started here). Since June and until her reassessment in January I am doing all her Speech Therapy. I'm grateful J had such extensive therapy because I feel (somewhat) confident, but I won't lie... I'm completely overwhelmed and scared I'm going to miss something. I'm also punting as the Occupational Therapist and Dietician... and nurse. Totally different and somewhat scary not feeling like you have a legion of people looking out for you and your child. I'm sure our PT will be great, but, I'm sure you understand the panic that comes with making sure your child is getting everything they need.

Remember back in the spring when I said J "finally caught up?" Well, yaah, she did, and then she entered 1st grade. Ha. It's proving to be much harder on my cute J this year. Her brain damage affected the processing ability, which we already knew, but it's rearing it's ugly head as the concepts are getting harder and harder (math..reading...). They have her on the "Rescue Intervention Team" at school. She meets with a reading tutor once a day, has after school tutoring with her teacher once a week, and I do 45-60 minutes of remedial work with her at home each night. It's exhausting but I'm hoping it will help! The RIT team will be watching her for another 4-6 weeks if there isn't any progression, even with the increase in help, they will do more language development tests to see if they can nail exactly what part of the processing is tripping her up (dyslexia, auditory processing disorder, dyscalculia, etc)...and then write up a specific IEP. I feel confident and grateful for the charter school we chose to put J in. Her Elementary school only handles K-3 and they have an Early Intervention Specialist for each grade specifically. I'm working closely with the teacher in hopes to reinforce what she's learning in class.

Sooo things here are going well, just a little overwhelming. But what part of that is new with us and our cute kids huh? I guess my main concern about J -and maybe y'all can give me some suggestions- she's getting to the age where you KNOW you're not doing the same thing as your peers in your class. It takes her twice as long to do an assignment, she's singled out for tutoring, etc. I don't want her confidence to be affected. I can't control the way other kids react or treat her, but I can help her channel her confidence. Any thoughts?

I'm Still Here

2009-09-25T13:38:00.001-07:00

Just so ya know. I haven't gone and done anything crazy. Ok, yes I have. I signed up to be the soccer coach for Marshall's team. I also reluctantly agreed to take Marshall to Wasatch Mental Health again. They have NEVER been helpful. They have only said Marshall has sensory problems, that's all, and then left us with no idea as to what we should do to get through this mess! Thanks a lot guys....

I also let myself get addicted to a game on Facebook and spent every spare second I could, playing that. I think it was a way to push the stress away, but it was not good. I finally was able to realize that what I was doing was not right and I stopped. I deleted the game and blocked Facebook too. So, if you normally look for me on there, sorry but I'm MIA until I feel I have control over my obsessive behavior. Maybe I will never feel like I can go back to Facebook. Who knows. So, for now, read about the sleep doctor update, Marshall in soccer, a silly song parody I made up, and soon I will update about school. But for now...the link- http://buckleinbunch.blogspot.com/

Sorry I don't have more to say. I need to get a shopping list made before I get Marshall from school. I love 3 hrs of time to myself. Ahhhh...it's so nice!

Radio Flyer

2009-09-24T22:42:00.000-07:00

* I posted this same post over at my blog prematuritywithlove.blogspot.com*
Birthdays didn't mean much to me until I had a baby. Then the only thing important to me is making Tyler happy. With that in mind every time his birthday rolls around and me and Dallas get to give him gifts I try so hard to find something that invokes a smile and HOURS of fun and joy.

Last year my sweet little man got a basketball hoop and a chair. That chair is the grossest most loved piece of furniture we own! This year I went in search of the perfect "chair" to give him.

I found the perfect cake for the perfect party but couldn't think of the perfect gift. We went to the toy store and once again found a perfect "gift" but it wasn't "the chair."

I wanted to get Ty a bike but knew that his Cerebral palsy wouldn't allow him to hold on and still ride at the same time. I researched and researched and found a good alternative at the toy store.

A Radio Flyer

Dallas put it together tonight and some little boy LOVED it.

He really really liked being able to ride the bike.

Though we need to make some adaptations to the pedals and it will take a lot to get him to ride it on his own he was such a big kid and he wouldn't stop smiling.

He was pointing up the street and telling his dad he "wanted to go there PLEASE."

The mom had tears in her eyes and she watched him go. Flying up the street as fast as our feet would take him. As we would slow down and turn around he couldn't get his hands up fast enough to sign "more please."
The simple joys of life. The simple joys a 3 wheeled radio flyer will bring.

2009-09-24T09:33:00.000-07:00

I have an announcement to make. Not that it will be as big a surprise to you my cyber-friends as it was to my in-laws on Monday night, but I am now 26 weeks pregnant.
My husband and I have been playing a game. We thought it would be funny not to tell anyone unless they flat out asked us "Are you pregnant?" I guess we're cruel. We thought it would be fun to watch people squirm. Let's face it - you've either got to be really brave or really rude to ask a woman if she's pregnant. So, that's what we've been doing. Slowly a few people have caught on, but my in-laws have not known. Nearly 7 months into this thing, I'm showing, we've been dropping hints like crazy and they hadn't caught on. So we finally gave in and told them.

Of course I can confide to this group that beneath the surface there have been a lot of other reasons to keep things on the down low. The intense fear I have for one thing. I just haven't wanted to have to hash over things and answer questions over and over again about all the possible problems we might have. People are well-meaning. I just haven't wanted to deal with all that. Including all those people who think we're crazy to be having another child anyway.

It's been an emotional roller-coaster for me. Sometimes scared and worried. Sometimes just excited for our new little girl to come. We've had a few scares along the way, but everything has been fine and is fine now. But I'm also at the point where things have happened in my past pregnancies, (preterm labor resulting in losing a baby, other issues causing pre-term emergency c-section, miscarriage, etc.) which makes me a little nervous. I can't help but be a little paranoid and overly cautious.
Today was 'walk your kid to school day' and I drove anyway. I feel a little guilty about that. But it is painful for me to walk, and I'm too scared to 'push' anything.....I'm sure many of you, if not all of you can relate.

I wanted to ask you all about something that was brought up to us a few months ago. Someone mentioned the umbilical cord blood and told us that there have been cases where cord blood has 'cured' cerebral palsy. Have any of you heard anything, or do you know anything about using cord blood? I've done a lot of research about it on the internet. There actually are stories about CP 'going away' after treatment. But pretty much everything I've found on the subject has been produced by the blood banking companies -- none of it negative. It just seems too good to be true -or as easy as they make it sound. There's got to be more to it. We've got an appointment with a neurologist at Primary Children's in a couple weeks to find out about it. I'm trying to build a good detailed list of questions to ask. I have no idea yet if it's something I want to try or not. But I really want to learn more about it. From what I can tell, it has no risk, for the new baby. If it could help MK even just improve the slightest bit, I feel like maybe I should give it a try. On the other hand, it seems so new. Is it safe? What are the risks anyway? What is the procedure? ya know? Do any of you know anything, or do you have any good questions for me to add to my list?

Thanks for listening. I'll appreciate any input you can give.

Need some equipment?

2009-08-31T13:33:00.000-07:00

Hey everybody- I've got a pair of walking wings and a set of pedi-wraps that I'm getting rid of. I'd send them to the D.I, but it's likely that they won't know what they are, or what to do with them. If you're interested, send me an e-mail and you can have them. I've included pictures of both below.
I know the walking wings have been posted about before. They simply strap around the middle of your child and have 'handles' for you to hold onto to help keep your little one upright. It's a one size fits all item. Ours has been very gently used. They look and feel brand new.

Pedi-wraps go around the legs. They are made of fabric but have metal or something inside to make them stiff. They act as a brace to help weak little legs stay up and stay straight. Ours are purple. They've been used once or twice in therapy and are otherwise brand new. I can't see a size on them, but I think they must be about the smallest size as they are about 12 inches (maybe a tad bit longer) in length. M.K. used them while trying to strengthen her standing muscles. They kept her legs from buckling under her.

Hey Girls. My HOLY COW post@

2009-08-22T00:19:00.000-07:00

Communication is kind of a problem in this house. I think there are so many times that there are sometimes when the frustration of our lack of communication is so non existent that I can't help but feel some what sorry for myself. And it isn't me that can't communicate!

A glimpse into what I mean before I get to the holy cow part: Yesterday Tyler got up at the butt crack of dawn. Like 3 am. Not kidding. He was happy, mom um no! He had PT and OT yesterday as well which is a total throw of his schedule. He is not that set on schedules where he freaks. In fact I am not even sure he knew it was not the right day. What threw him off was the new contraptions he is to wear. He only had to have them on an hour. While getting on his shoes he was crying and crying and crying. His dad got him calm and the trip to PT was not as bad as I had anticipated. He was fine. He wouldn't let me leave him at PT which is abnormal but otherwise he was fine. He walked for Rachel and played his game for Jackie. He was allowed to take his shoes/braces off on the way home.

He played all day with Corine ( his respite lady) and we knew hew as exhausted. He fell asleep on our bed way late. We woke him up at 6 pm and bed time is at 8. He is a bear when he wakes up then compound his lack of verbal skills and you can only imagine the frustration he has. Dallas and I together couldn't figure out what he wanted. Finally we got him to sign SOMETHING. He wanted water, pool and something else. But he signs PULL not POOL. But it means the same thing to his ears.

So needless to say, communication is huge.

His speech is getting cut in Utah and he has been out of speech here for about a month. It was so hard to get use to the idea that he won't have it. He needs to talk. He needs the therapy.

While we were waiting to get our braces I thought I would go through the " Can you say this game?" We have been super working on just the basic sounds like Ba, Da, ta.. you know the stuff your 9 month old says.

He will say Ma or mom fine, and we FINALLY got him to say Ba. It was huge. We made a huge deal out of it. We let him be the praise junkie he is and then we moved on to something new. Those that know him know he won't say Da or dad at all unless it is by sign. Sign is fine. It is nice to see he KNOWS Dallas. But hearing it is way better.

SO, in the middle of a nasty circle K bathroom ( I really really had to go and Bret was still closed) he wanted to touch the floor. I said "ew no. Its Dirty! Can you say Da da Dirty?" SERIOUSLY we do this ALL day. When he wants something we say can you say "Fo fo food." I am sure people think we are NUTS. He looked at me and smiled and said Da. I gave him the praise junkie YAY and asked again. And again, and again. I finally called Dallas but he didn't answer and was super excited.

I was afraid he would pull a Tyler and NEVER say it again. But sure enough when we got home he said Da. When I would ask him to say Dad he would say Da and sign dad at the same time. It was making his dad BEAM from ear to ear.

So HOLY freaking cow! He has a new sound.

Signs and sounds he is currently making: A glorious LIST for YOU! ( the big words IE computer are all signs or approximations of signs)
Da
Ba
who ( like owl talk who who!)
T sound
S sound
Computer ( Dallas LOVES this one)
Dad
mom
Elephant
tiger
lion
monkey
pull
pool
water
all done
more
food
yummy( this one is just a sound he makes)

I think that is it for now. As you can see it is not extensive but it is a START and we love that he is progressing no matter what the speed!

* This was posted at my blog so you get a repeat*

BUT..... on a happy note. We are moving back to Utah. That's right ONE WEEK till we touch down in Utah county! Not sure how my hubby will do in Utah county but I am so excited. We have a new preschool that is just opening and hopefully we can get it all started and set up quickly!

It's been a long time!

2009-08-17T20:09:00.000-07:00

I haven't posted on here in such a long time. I thought summer would give me more time to blog and keep up with the cyber world, but with all three boys home... it has been nuts!

My little Josh is doing pretty good right now. He had his PEG tube placed on May 29th and has had some small problems with it, mainly with granulation. He then had the conversion done to a mini-button on July 29th. He came home a lot more sore than I thought he should and within a couple days had granulation started again. We got that under control then the skin started to do this weird thing and bleed and the hole got bigger... it was a nightmare. He was hurting alot and screamed through all feedings and dressing changes. After taking him into our pediatrician and not really getting anywhere, I demanded an appt with someone down at Primary Children's. Our GI doctor was out of town at this point... that was our problem. So we got another doc to agree to see him in between surgeries. He was diagnosed with a staph infection at that point. The doc looked and said he did not have granulation at that point. We got started on antibiotics and within 24 hours the granulation came back. UUUGGHH!!! It has been so frustrating. The staph infection is looking almost gone so we are making progress, but it has been rough. He has spent many (too many to count) sleepless nights. At least his weight gain had been what they wanted to see with the G-tube in.

But on the more positive side, Josh mastered the stairs!! We have been working on the stairs with his physical therapist since January! He could go up them 3 months ago, but he just could not get the down part. It is all part of his dyspraxia. But it all just clicked last week and he went up and down all by himself. We were able to remove the gate for our stairs and he can now just go up and down when he wants instead of waiting for me to help him. It's been an exciting thing for us. I knew the mom's on here would understand how exciting this is. I have told a couple people who don't know Josh very well and they look at me like I am crazy for being so happy he can go up and down. But we partied here for him!!

I hope all is well with all of you mom's and you are getting ready for another school year to begin. It's been a nice summer, but I am ready for school. I can't provide the same structure my autistic son needs at home, and we have had so much together time this summer.... we need a break! Good luck with the challenges I know you all face this fall and I am thinking of all of you!

What do you think? Inappropriate or not?

2009-08-17T10:12:00.000-07:00

I have to bounce something off of you all. I'm having hormonal issues, so I can't tell if things that are bugging me really should be bugging me or not. Know what I mean? There's a particular issue that I think is really stupid. But maybe it's just me. Maybe I'm out of line, and should have more of a heart. Let me know what you think. I'll try to leave out any personal feelings as those may be clouding my judgement as well.

We've had M.K. in an animal therapy program for the past several months. It's a non-profit, volunteer run organization. When we signed up we were told it would cost x amount of money. We were encouraged to find a community sponsor to pay the fee, just to get the word out about the program and make people aware.
Last week, one of the volunteer therapists got a hold of the parent e-mail list. I don't believe the people in charge know about it. She sent an e-mail to all of us parents. She started out with the line "I want to address something that has been bothering me about all of you." Then continued to tell us about how the person in charge has sacrificed so much to run this program - mortgaged their house twice and is $30k in debt because of it. And this therapist further believes that because of this, we should all be paying more because the payment asked for isn't covering the costs.

I think much of my reaction has to do with the way it was presented. The first line put me on the defense immediately. But I also kind of feel like when I pay what is asked and take my child to therapy every week, that I shouldn't be given a guilt trip for doing that and be asked to pay more money because of someone else's a)lack of financial foresight or b)desire to keep the costs low for us families. I don't want to feel guilty about taking her to therapy. ya know? I have enough to deal with. Am I out of line here? Should I be feeling so sad for the one in charge and trying to scrape up extra money that I don't have, out of guilt?
I think it's kind of inappropriate for the therapist to take things into her own hands and first of all speak for the program with out the knowledge of the director, or to talk to us parents like she did. It seems to me that a director who has been running this program for several years would know the costs involved, and probably has her reasons for doing things the way she does-whether it puts her in debt or not. It also seems out of line to come back to your clients after they have paid, and ask for more money. I wonder if the therapist understands the costs involved with having a special needs child, or if she's donated any money to the program herself......

I don't know. I'm always grateful for the therapy we receive and for the therapists who give it. It's always so nice to have someone take an interest in helping your child. I want to keep being blissfully ignorantly grateful now, but I'm bothered by this. and I don't want to do the therapy again next year. I'm curious to hear your opinions though.

Second DAFO...what do you think?

2009-08-12T19:58:00.000-07:00

Okay, so we went to JT's Physical Therapist's today. I have been kind of worried about how his gait has changed the last few months. His left foot and leg have been the problem side in the past and he already has a DAFO on that side. Lately he has been walking on his toes on his right side. It looks like he is trying to make it easier to just swing his left leg up without catching his toes. I have heard of "tippy-toe" walking and I knew it was a reason to get DAFOs. So I guess I wasn't completely surprised when it was suggested we get one for his right leg as well.

I hate to give him something else you know? I really hate the idea of putting a DAFO on his leg that doesn't seem to be affected by his CP. But I know he won't change his way of walking without some sort of help. The other option was to get sturdy hiking boots but it is already so hard getting shoes that will fit both feet (the left over the DAFO and the right foot is so skinny even in smaller sizes shoes that are big enough for the left rarely stay on the right)

It was hard to see him walk in the right DAFO she had laying around. Minutes before he was running and showing off, but with it on he was unsure and unsteady, asking for help often...but on the other hand I have never seen him walk so normally, slow, unsteady but it looked RIGHT. I don't know how to explain it.

I feel like getting the right side would help him. But I guess it is just saddening. Does anyone have a suggestion? Anyone had something like this happen? Is there another option I am not seeing?

I hope all of that made sense. I have had a long day.

2009-08-05T15:29:00.000-07:00

Hey Everybody,

I just got this e-mail from Jamie. (The Mom whose boy was abused at school) I'm sorry I'm slow in posting it. I just got back into town---She is going to a School Board meeting for Weber County TONIGHT at 6:00p.m. Again, sorry for the short notice. That's my bad. If any of you are interested and able to go, I'm sure she'd appreciate your support. Here is the rest of the e-mail she sent. Valuable information to know.

I would like to share some important information if you could pass it on please. Please let the Mom's know how important it is to be informed on your rights and that of you child. Not just to the extent the school gives you dig deeper! just an FYI they are hiding behind the FERPA laws in our case, (and stating that is why they could not say anything, and why the aide was released) BUT... My son has medical reasons why I should have been told everything according to this!

Personal Knowledge or Observation

FERPA does not prohibit a school official from disclosing information about a student if the information is obtained through the school official's personal knowledge or observation, and not from the student's education records. For example, if a teacher overhears a student making threatening remarks to other students, FERPA does not protect that information, and the teacher may disclose what he or she overheard to appropriate authorities.

The "Health or Safety" Exception – (34 CFR 99.36)

The Department has made three important liberalizations to the section of FERPA which governs how institutions can make use of the "health or safety" exception to FERPA.

No longer will the health or safety exception be "strictly construed" [the old section 99.36(c)]. Instead, section (c) now provides the following three types of useful flexibility:

First, in making a determination as to whether to invoke the "health or safety" exception, institutions may take into account the "totality of the circumstances" pertaining to the safety or health of a student or other individuals.

Second, if the institution determines that there is an "articulable and significant threat" to the health or safety of a student "or any other individuals," it may disclose information from education records "to any person whose knowledge of the situation is necessary to protect" the health of safety of the student or other individuals.

Third, "If, based on the information available at the time of the determination, there is a rational basis for the determination, the Department will not substitute its judgment for that of the educational agency or institution in evaluating the circumstances and making its determination."

Another change occurs in 99.36(a). In connection with an emergency, an institution may disclose personally identifiable information from an education record "to appropriate parties, including parents of an eligible student [emphasis added], if knowledge of the information is necessary to protect the health or safety of the student or other individuals." The provision for disclosure to the parents, in this context, is new.

In addition, the Department will now require that the institution involved must record, under 34 CFR 99.32(a)(5), the nature of the threat and the parties to whom it disclosed information under the "health or safety" emergency exception.
 
 
53A-11a-301.   Bullying and hazing policy
 
 (3) The policy shall include the following components:
(d) procedures for protecting:
e) procedures for promptly reporting to law enforcement all acts of
bullying, hazing, or retaliation that constitute criminal activity;
 (i) a procedure for referring a victim of bullying or hazing to
counseling;
 
(j) involving the parents or guardians of a perpetrator or victim of
bullying, hazing, or retaliation in the process of responding to, and
resolving, conduct prohibited by this chapter;
(k) to the extent permitted by federal and state law, including the
federal Family Educational and Privacy Rights Act of 1974, as amended, a
procedure informing the parents or guardians of a student who is a
victim of bullying or hazing of the actions taken against the
perpetrators of the bullying or hazing;
 
If they have a policy they didn't follow it.  If they don't have a
policy they are in violation of 53A-11a-301.   
 
 
Under IDEA, children with disabilities are entitled to a free and
appropriate education (FAPE) in the least restrictive environment
practicable. In turn, a FAPE includes special education and related
services which are reasonably calculated to permit a child with a
disability to benefit educationally. Consequently, actions taken by
school districts to alleviate an unpleasant bullying situation for a
special education child in order to comply with Title IX's dictates
concerning peer sexual harassment may inadvertently also violate a
child's right to a FAPE by altering that child's placement and/or
programs. In order to prevent placing school officials in this legal
Catch-22, a legal model needs to be developed which ties the overlapping
statutory frameworks of Title IX and IDEA together in one hybrid legal
cause of action. Alternatively, if Title IX's stringent legal standards
for peer sexual harassment cannot be met in a given bullying case even
after incorporating IDEA concepts, IDEA may also provide legal bases for
special education children to obtain monetary damages against school
officials who have failed to protect them from bullying, which, in turn,
has violated that child's right to a FAPE under IDEA.