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

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

Sensory Integration

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!!!

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

"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:

1. Sometimes it can be REALLY hard to be grateful.
2. 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

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!

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?

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?

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

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

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

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

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

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

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???

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?

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

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

or

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????

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

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

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

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

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.

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.

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

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.

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

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

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?

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.....

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

One of those days.

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?

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.

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

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

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

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

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

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

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

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

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

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

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

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....

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?

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...

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

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.