Thursday, November 27, 2008

Hello World!

I am new here an wanted to introduce myself.

My Name is Nancy. I am a stay at home mom that works part time. I work in the evenings so that all our "issues" are dealt with in the day and we get all the benefits of working and the SAHM part.

My son is Tyler. He is a 25 week preemie. He was born in 2005 and came home with us on December 23rd 2005. One day before his due date.

His entrance into the world brought us into a world we only heard existed. It has been a roller coaster that we have endured as well as we can. We have enjoyed most of the journey. There are still things we are learning to deal with and as they come we just change our course.

Tyler was diagnosed with grade 3 and 4 IVH ( inter ventricular hemorrhage) at a few days old. It has since brought with it a myriad of events that has lead us to today. He developed hydrocephalus and craniosynostosis. He has ROP ( retinopathy of prematurity) that has left him with low vision. And just recently we have received a diagnosis for Cerebral Palsy.

Tyler is now three and we have entered the school age world of preemies. We are so proud of where we have come from and where we are going. Tyler is not the baby on paper and we are always so amazed at what he has accomplished.

I can't wait to continue reading and writing.

Wednesday, November 26, 2008


Motherhood holds within it's courses a series of compromises. We compromise a wardrobe of nice stylish clothes for those adorned with spit up and smeared peanut butter on the shoulder. We compromise quiet thoughtful moments alone for never-ending days of slamming doors, stomping feet, tired cries and squeals of laughter. We compromise well written and interesting novels for bedtime stories full of make believe creatures and enchanting pictures. And somewhere in it all, we find that the compromises make us better women. Give us greater desires. WE find ourselves wanting to compromise our own selfish needs and desires for those of our children. We work tirelessly creating a world for these precious souls in our charge. Ever conscious, ever careful to nurture, love and protect. Some days we are bold and strong. Some days we are vigilant and inspired. But in the end we find that sometimes it's necessary to compromise good, for good enough.

We are mothers. We carry the burdens of the world on our shoulders and the tender miracles of the future in our hands...

One of the most successful women's lessons I've ever witnessed at church started with Kitty Sue Anderson reading off a four page to-do list of the 'perfect mother'. She never got to ask a question or make a single comment. Every woman in the room it seemed, started making comments, divulging the unspoken secret of dirty houses, unmade dinners, and other neglected household duties. For the first time, I felt a camaraderie and a belonging to those women. I felt a new-found relief and comfort in the illusion that I was not so different or inadequate a homemaker as I have always believed. I was among sisters.

I have tried to remember that comfort. I've tried to hold onto it. But good feelings tend to slip away once all the women go home and get back to the work of grinding their wheat, cooking their casseroles and homeschooling.

This week we were almost on time to church. We sat nearly on the front row because of it. It should have been easy to pay attention to the speakers. Instead my attention was drawn to the frayed edges of a small hole in the upper leg of A's pants. My boy, dressed like a vagrant at church. Not because we are destitute, or in need. But, because his mother had failed him. They were the only clean pants he had to wear. That idea stuck in my throat reminding me of all the things I've failed to do recently. All the neglected housework. All the responsibilities that have slipped through the cracks. It did not do me any good to turn away from him. My attention only turned to MK. I had barely combed her hair. No pig tails, no pretty bows to match her outfit. Her hair was full of static, and what wasn't sticking straight up, was stuck flat across her forehead like a sweaty cowboy who has just removed his hat. I was too busy preparing my lesson and getting myself ready to take good care of her. It's not as if people wouldn't see her, stare at her. A bright pink wheelchair tends to draw attention. Another reminder of a mother failed. Another rush of guilt. I should have listened to the speakers. Perhaps there could have been some solace to glean from their words. Instead, I diverted my eyes downward to stare awkwardly at the floor, unable to rid my mind of it's own cruelty.

The last few months of life have come at me with a barrage of adventures filled with complications and the necessity of arduous response. I am a weary survivor.

Today I sent A to school with dirty pants, and a wrinkled shirt, but with clean underwear. MK's socks don't match, her hair is full of static again, but there are pigtails in it.

It's all about compromise.
I may not be the kind of mother I want to be.
My house may not be as clean as it should be.
The laundry may not be finished. Or started.

I may not be a good mother.
But I am good enough.

Monday, November 24, 2008

Any Advice?

We got progress reports and OT reports on our two kiddos this past week. It made me in one way feel validated for my instincts have been on this whole time, but I also felt a bit sad. I don't want them to suffer or stand out. We need help with how to teach them social skills, attention, how not to follow negative peer leads and how to adjust to new situations. My youngest at six months old has syndactly, webbed fingers as well. He does not like to be laid on his back, strapped in his car seat or confined in blankets or socks. Both he and his 4 year old brother like to hit their head into things and are VERY oral seeking. And we had his first major ear infection already, not good! If any of you have any input or ideas on our areas needing work please let us all know! We are looking for help with:

managing feelings appropriately
playing well with other children
using pencils and pens, writing tools correctly
exploring cause and effect
appropriate social behavior
telling the truth
managing anxiety and separation
sorting and classifying
paying attention to detail
sensory overload in the classroom
risk taking behaviors
reduced verbalizations of need, reverting in age
trying unfamiliar foods
staying engaged and interested in school
taking and hoarding things

Saturday, November 22, 2008

Everyone Has To Deal With It Eventually

I'm finally getting around to posting my feelings after the well child checkup on Thursday. Both my boys went in.

Nathan has ADHD and has been losing weight like crazy! He's 69 lbs now but he was 74 in August and the Pediatrician was concerned then! So, we've got to really push Nathan to eat more. What is it with my kids and eating problems? I wish I could lose weight as fast as Nathan did! The doctor also recommended that we try something like Zoloft for his anxiety because it has an anti-depressant in it as well. On Halloween, he was not even excited. He was too mellow. I kept asking if he wanted to go trick or treating with his friends and he kept saying, "I don't know," or not answering. Strange...

Marshall lost weight again too. He's now 29 lbs. That's quite a few pounds of loss from last time he was weighed. Last time he was I think 34 lbs or something. I was SO suprised when he was that heavy. But here we are. He is 4 now and 29 lbs. Time to push him to drink more Pediasure.

I expressed my frustrations and concern with Marshall's behavior, lack of sleep, eating problems, and anger. He said Marshall is a perfect candidate for Risperdal. I told him how Marshall OBSESSES about bad guys and monsters. He hardly ever sleeps through the night anymore. He wakes up crying that the bad guys are coming back. I remember Nathan having bad dreams and even having some night terrors but this is so different. I asked the doctor about it and he said it's normal for kids to obsess about something but kids with Asperger's Syndrome do it to a more extreme level. Did he just say what I thought he said? Yes, he used Asperger's Syndrome to describe Marshall. I expressed the difficulty in raising this boy. I told him (and nearly started crying) how it feels like I'm going crazy because people don't believe me that Marshall has problems. Bad parents. People don't say it out loud but they hint around to it. The doctor told me I'm not crazy and he thinks we're heading down the right track with him. He thinks Marshall probably needs something like Zoloft as well but he wants to see us increase the Risperdal first and then see if we need it. I mentioned my concerns about Risperdal being an anti-psychotic and therefore a dangerous drug. This doctor is really NOT one to prescribe medicine unless absolutely neccessary. He explained that Risperdal is working wonders for Marshall (and it is!!) but it's obvious he's not quite on a high enough dose. So, I'm feeling like it's time to leave the ADHD specialist and let my Pediatrician handle the meds for my boys. I've felt uneasy with the specialist for a while now. He's an older gentleman and very kind and was the first one to give me meds for Marshall. I just don't agree with his choice of medicines and neither does my Pediatrician. The Pediatrician said he would never give Marshall a stimulant. The ADHD doc has twice now and twice it's been awful.

I think there comes a time in every parent of special needs kids' lives that they have to deal with the fact that their child will always be different. I've never dealt with it. I think it's because I've had to fight so hard to get anyone to believe me that I half thought I was making it up! Then we would have a REALLY bad day and I would know that I'm right; That there is something wrong with Marshall. Thursday afternoon we had to go to the Scout Office (ugh. I'm there WAY too much). Every time we go there, Marshall has to go up one set of stairs. On our way out, he has to walk around the small rock wall that surrounds the flower bed and flagpole. He has to ask the same questions at the same places when we drive anywhere. If we drive past the Scera Pool, he says "There's the Scera Pool. It's closed. Mom, when can we ever go to the Scera Pool?"
The four year old boy that I babysit was excited when Marshall went to school Friday because then he could play how HE wanted to play. Marshall can't handle playing with his toys any other way than what he has in mind. Stubborn? OH YEAH! It made me kind of sad that this boy was happy to see Marshall leave. They didn't really get along that well. One day the boy scratched Marshall's head because Marshall was playing with the middle seat belt buckle. Who cares? Seriously, is it worth making my boy bleed? Marshall still has a scar on his head. This boy has hit him, screamed at him, and slammed his fingers in the door because Marshall did something he didn't like. Is that how it's going to be for Marshall? He is quite an annoying little boy but we just try not to get upset because he can't help it. He's just being himself. Will others not tolerate him? Will nobody want to be his friend? Only time will tell.

"Ima Mom" took these pictures last week. What do you see? We could not get him to smile that much. That's what you get when you take this boy to a new place, to do a new thing, and see somebody new who is talking to him and taking pictures of him. He wasn't that happy but he's still cute.

Friday, November 21, 2008

Feeding Therapy Day 1

We went to our first feeding therapy yesterday. The therapist told me she thinks Marshall's eating problems are behavioral and possibly due to reflux but we're not sure on that yet. She says, somewhere along the lines, food was scary to him and he didn't like to eat. He was always difficult to nurse and then bottle feed when he weaned himself.

So we started with a baby spoon dipped in food and he has to open big. She let him play with a toy while he did this. So, for example, he played with a Mr. Potato Head set that had a couple of baby potatoes and a couple of carrots with all different stuff you can put on them. Every time he successfully let a spoon go in his mouth, he got another piece to put on the Potato Head. When he started, he actually began with this race track that runs two cars down simultaneously. When she switched food, she switched toys. She gave him some berry applesauce, which normally he would absolutely REFUSE to eat. She started with the spoon dipped in the applesauce and had him open big. She did about 10 or so of those before she handed it to him and had him dip and feed himself. Then she tried again and gave him actual spoon fulls of the stuff. He ate it without a complaint. She and I both think it's because he was so distracted. She gave him vanilla pudding which he grabbed and ate himself. No need to tell him twice. Apparently yesterday was "I love vanilla pudding" day. Today will most likely be different because that's how Marshall is. With this routine, he even let her put Ravioli sauce in his mouth and it had some chunks on it. She was amazed!! She said she thinks Marshall's eating problem is behavioral. It's not our fault. We don't know when or why it happened. Perhaps it has something to do with us trying to feed him a lot when he would wake up all night long. Maybe it really is silent reflux and it's never been properly treated. It's hard to know.

Thursday, November 20, 2008


Old Navy is having a sale on their socks. They are GREAT for DAFO users! I was there yesterday and got some. I am not sure how long the sale is running, sorry. Thought that you might want to know

Tuesday, November 18, 2008

Utah Walk Now for Autism 2009

Hey everybody! I'm excited to say that the Utah Walk Now for Autism walk is going to be on Saturday May 2, 2009 at Utah Valley University. I've already started my team. So.....if you are interested, start your own team, or you are welcome to join mine. The Walk last year was awesome, and I am so looking forward to this one! Here is the site to check it out.

Cute for Hearing Aids and Glasses!

I found this short highlight in the December issue of Parents Magazine, and I thought I'd share:

Cooler Hearing Aids

A little decoration may help a child feel better about wearing a hearing aid. Tube Riders--rubber accessories that attach to the tube portion of most hearing aids and over the ear hook of cochlear implants--are the brainchild of Nashville mom Stacie Pierce. She came up with the idea when her son needed glasses. She found that he was more willing to wear them after she attached little rubber figures to the stems. Her husband wears a hearing aid, and she realized the decorations fit them perfectly too. Tube Riders come in a variety of styles, including soccer balls, flowers, and rocket ships. $7 for a pair; .
And...I just have to post this cute one cuz I'm a sucker for flowers--SO CUTE!

Where to Start?

Thanks for all the great ideas... We actually have contacted the local newspapers to get a letter of thanks printed, and we are getting a picture of Bree blown up with a big "Thank You" across the bottom to hang in the school along with a letter to be read in their morning announcements (Even the picture is being printed by some friends). I still don't feel like it is enough. It never will be. We have been blessed with awesome doctors, and after some of your stories I really do count it as a blessing, wonderful therapists, and now an entire community pulled together for our family. I will never be able to express my feelings towards them. I simply do not know how. I guess Liz got it right when just "pay it forward" whenever I get a chance.

Monday, November 17, 2008

Still Sorting Through It

Last Wednesday was a very big night for Bree, and our family. It has taken me a few days to write about this because I still do not know where to begin. I feel that I am at a loss of words.
Word got around about Bree’s schizoencephaly at Ogden High School (my alma mater). HOSA (Health Occupations Students of America) does a fund raiser every year and this year sponsored our Bree, our family really. OHS class of 2001 may remember the first Mr. Ogden Pageant…
We were invited to attend this year’s pageant it was a BLAST. I had so much fun watching the crazy boys dance around the stage showing off some truly creative and impressive talents; remembering life before life. I was taken back to my high school days. It was so much fun! I really loved it! However, when they talked about Bree I took her up on stage, I was grateful for her and our other children. I would never trade any of them or the problems we are facing for anything. The things I never knew I never knew.

I want to say thank you. I know it is not ever going to be enough. Where do I begin? Whom do I begin with? How do you tell an entire community that by them pulling together it means more your family than simply a monetary value? I in no way mean to make that sound like it is not important to us, because it is just the opposite. I did not even dream that it would be to such a great extent. Luke and I still have a hard time wrapping ourselves around it. Yes, we have both been involved in helping others even donating to fund raisers when we were high school students. Never did I truly realize what it means to be on the other side of it. It is a humbling, touching, emotional experience. THANK YOU. To a community; the businesses, churches and families that donated items to be raffled and gave checks. Thank you to the Ogden High Student body and their families for the donations and thinking of us, and letting us be a part of such a fun night. The boys that were in the pageant, willing not only create incredible memories for themselves but for doing it for little Bree! HOSA and their advisor, Mr. Christensen I can absolutely not forget the two sweet girls that organized all of this… Sara and Amanda! The two of you along with all of those boys will do great things! I know because you have all ready started!
Bree will hopefully be starting sign language classes and will continue with her Physical, Occupational and Speech Therapies. Bree Anne is going to benefit more than I even thought.

Sunday, November 16, 2008

Hello, finally...

Hi I'm "Liz", and I'm really glad to be joining in with you all here too! I've been reading since the start of the blog, but writing my intro has been the hardest thing for me to do, so that's why it's taken me this long to join! I am the mother of 3. A happy and healthy 6 1/2 yr. old boy, an angel, and a miracle.

We were blessed with our angel in October of 2004. Having her completely changed our lives. Our precious little baby girl was born 13 weeks early under traumatic circumstances, to say the least. Unfortunately, bad medical care played a huge part in our whole story. It's a complicated and painful one to tell, so I'm going to just leave it at that. She lived for 23 cherished days, before passing away due to an infection she got in the nicu. She touched our hearts and changed our whole lives. I truly mean that. We'll always be grateful for all that she brought to our family, so much love. We love you, we miss you N.

Fast forward 2 yrs....gosh, if only I could have fast forwarded time as easy as that! We got a couple of 2nd opinions and a new doctor and I got my cervix stitched up when we got pregnant with baby #3 to keep it from opening prematurely. We hoped that was going to be the worst of things, but I just had a feeling there was going to be more to this next pregnancy than that. At 17 weeks we found out that our new baby, another girl, had spina bifida, hydrocephalus, and clubbed feet. It was really hard to find ourselves on yet another roller-coaster, after such a huge loss before. But, we accepted it, and were hopeful. We really just wanted this baby to live and be with us. At 25 1/2 weeks, her head measurements on the ultrasounds were starting to measure below 5th % which was not typical for SB kids who usually have really big heads because of the excess fluid on the brain. We were sent back to meet with the neurosurgeon we'd seen after the initial diagnosis, who was to do her surgeries at birth. He gave us absolutely no hope, painted a very grim picture of what her life would be like and encouraged us to terminate now, saying "it could be tricky, but it could be done" this far into the pregnancy. How do you ever forget words like that? I wish I could. It was terrible. But, one thing was very clear he was not going to touch our baby! We thankfully, got in for a 2nd opinion with another pediatric neurosurgeon about 3 weeks later, who was so good to us, and exactly who and what we needed. He made us feel that he valued our child's life no matter what, and said, it was way too early to be so pessimistic, and let's just wait and see....It was a long wait.. But, she was born at term which was a blessing in itself. Her first surgery was at 1 day old, to close the opening in her back. And her second surgery was at 4 days old to put a shunt into her head that drains the extra cerebral spinal fluid off her brain. None of it was easy, but we brought our baby home with us 3 weeks later, and she's amazed us all from the very start.

She is our miracle. And nearly 2 now. She is pretty much paralyzed from the hips down, with the exception of being able to kick her legs up when she gets excited or happy, b/c she has the very upper muscles in her legs that do work. (it's really cute and makes us laugh when we see them kick) But, because her spine was open in the womb, those exposed nerves were permanently damaged. So, even though her back was closed at birth, it doesn't change the damage that has occured. She has bowel and bladder issues, but we have things that help w/ that. She's also had surgery to fix her clubbed feet, and wears braces now.

I relate to having lots of doctors and appointments, PT,OT, and Speech... it's not easy some days, there is so much to do and many special needs...but, I too am very grateful to have my child here to hold and love. She has learned to army crawl, and has a little purple wheelchair that she can push herself around in (when she's motivated for both, that is!) She loves to laugh, and play with her brother. In most ways she is very much a typical little girl...but with legs that just don't help her out!I'm glad to be here with you guys, and even though we all have different stories, I know we share many of the same feelings having kids that are "special" and a life that is different from most around us. I love what everyone has shared on this blog so far! Thanks for listening... Liz

Saturday, November 15, 2008

Another New Friend

I just wanted to welcome Liz to the site. I can't wait to hear your story and get to know you!

Wednesday, November 12, 2008


Yeah, sure Marshall. We almost believe you...
This is why I've been MIA lately. Marshall's sleep habits are all messed up. He hasn't slept through the night in I don't know how many days. I've lost track again. His behavior has been so bad lately that it's all I can do to survive my days. I've been trying REALLY hard to stay positive. I've been praying that I can see Marshall as Heavenly Father sees him and love him despite his challenges. I think it's working because I've had more patience with him. Well, with both kids actually. That doesn't mean we've had it easy here. The ADHD doc we see said we have to get Marshall's behavior problems under control now or we're gonna be reading about him in the paper. The doctor said he needs counseling but my options for that are only Wasatch Mental Health, which I have had ZERO positive experiences with. I'd rather not waste my time. So now we're trying Ritalin in addition to Risperdal. He also takes Clonidine for sleep. So, that's what has been going on here. Sorry I have no time to comment on anything. Welcome everyone who is new. Hopefully soon things will settle down enough that I can read more and blog more. I'm also Cubmaster for 2 Packs and currently filling in for the Wolf Den Leader as well so I'm INCREDIBLY busy (and tired).

PECS System

This message is in response to Katie's question about PECS. I just thought I'd type it out here instead of as a comment so I could get some working links to follow.

PECS stands for Picture Exchange Communication System. It is used a lot when working with nonverbal autistic children, but it can be helpful and successful with any nonverbal child. Here is a site that will give you a brief idea of how the system works.

Here is a video of how one mom is teaching her son to use the PECS system. In this clip they are working on vocabulary, so in the future he knows how to ask for what he wants using pictures. There are a lot of other Youtube videos out there, too. You can make them as simple or complex as you want and as cheap or expensive as you want. There are devices out now that will actually speak for a child now, too. It is really cool (and expensive). It is like an electronic PECS book that the child carries on a strap, and when they select their pictures to make sentences, the device speaks the words. One of Mason's little buddies uses it--they are really awesome.

If you are interested at all in PECS, there is tons of information on the internet, training books, and PECS resources you can buy just by doing a google search. I can even show you a real simple form of PECS they use in Mason's classroom. I'm sure there are other moms lurking around here that have some useful knowledge too. Good luck!

Monday, November 10, 2008

Any advice?

Thank you all for the warm welcome!  

It seems like every Sunday it just gets worse.  Nursery.  Nothing strikes fear into my JT's heart more than that word, or so you would think if you saw him at 10:15 every Sunday.  I used to stay in there with him the whole time.  Then I started sneaking out just to have the workers bring him to me after 5 minutes of nonstop screaming.  Then I was called to teach the 3 year olds.  So every week I could hear him crying off and on (more on) for 2 hours.

This week we hit our peak.  When he saw the stairs leading to nursery he started crying and wiggling.  Then he forcefully shook his head "no" while signing "please".  It was heart breaking.  I made it halfway up the stairs before I started crying.  We had had such a long week making him go places he didn't want to go and seeing people he didn't want to see and he was begging me, there is no other way of describing it.  As I cried, he took my face in his tiny hands and pulled my head towards him hugging my head to his and crying along with me.

So he came to class with me.  He doesn't really like it and it makes teaching much more difficult but I am not sure the best thing to do.  He can't sit still through 3 hours of church.  We barely make it through the first meeting without problems.  Do I leave him at home?  I feel like he should come to church....but if it is a bad experience why not leave him at home with his dad?  The Presidency said they would give me a break from my class for a few months to sort things out but this isn't gonna change in a few months.  

He acts this way every time I walk out of a room.  I haven't gone to the bathroom or taken a shower without an audience since he could crawl.  Do I need to be more forceful?  I don't want to be, I have to make him do so much he doesn't like already and this doesn't seem as important.  Is this something he will grow out of someday?  I imagine he won't be 30 and crying at the bathroom door so I guess someday.  I love that he loves me it is just times like this that it makes me want to scream.


We'd like to welcome another new member to our ranks.  "Katie Davis" has joined us.  You can read her story below.  Let's leave so some love and help her to feel welcome here!  It's not everyday we find someone who's been searching for us for two years!!!

Friday, November 7, 2008

Hello All!

Hello!  I am so excited to get to know you guys.  I have been looking for someplace like this for 2 years.  

My story starts March of 2006.  I was going to find out if my sweet baby was a boy or a girl completely unsuspecting, forgetting, as everyone seems to, that ultrasounds are for checking up on the baby.  The nurse kept going over and over my belly saying half sentences like, "What is..." and " that...."  Finally, she brought the doctor in and he said the same half sentences and then,  "Your son has a birth defect called Gastroschisis."  

Gastroschisis is where the abdominal wall of a fetus doesn't grow correctly so their bowls are on the outside of their body.  For 8 weeks they had me come in 3 times a week to watch him.  He wasn't growing and my fluid was low so 3 times a week I heard how my son must have something else wrong with him and IF he lived to be born he would die shortly after.  Then from week 28 to 30 they made me stay in the hospital POSITIVE that they would have to do an emergency C-section.  They were wrong so they let me come home on bed rest, coming in every other day until the 36 week when they insisted I deliver.

JT was born perfect.  3 lbs 9oz of beautiful screaming baby boy with his little purple guts swinging around.  They took him down the hall of U of U to Primary Children's NICU.  His first surgery was a few hours later.  Pretty much all they did was stuff his bowls back in and sew him up.  Parts of his intestines were affected they were too small in places so nothing could pass through.  These parts needed to be cut out but the surgery had to be postponed so he could grow.  (by the way, they were wrong about something else being wrong with him)

Two weeks after he was born, while we were still waiting for the next surgery, they told us he had an infection but don't worry because most everyone gets them and it wasn't likely it was anything to worry about.  They were wrong again.  Bacterial Meningitis.  My heart dropped.  My mind screamed, "THIS IS WHAT PEOPLE DIE FROM!"  For 10 days we couldn't touch him.  He was white, whiter than I have ever seen a person be.  Then they took us into a room full of doctors.  You know this scene, it's the one where everyone except you knows something horrible and it's time for you to know too.

They showed us the MRI's, the ultrasounds and then they explained.  "Your son's brain is liquifying.  The parts that are gone will never come back.  75% of his brain will not exist ever again.  He could be a vegetable...or he could almost be normal...don't hold your breath on that though."  Okay, that wasn't their exact words but close enough.   From that room on, my husband lost all faith in God.  From that room on, I knew JT wasn't being taken from me.  He wasn't dead, I could stop praying for him to die quickly and I could stop crying and planning his funeral.  On good days I still feel like that.  Who cares about the therapy and the doctors offices when you have that sweet child on your lap?

JT has been behind on all of his milestones.  He now walks and he has a fabulous sense of humor.  He is happy.  Completely attached to me, which I love.  He doesn't talk but we have a couple speech therapists.  We recently found out he has sleep apnea and seizures while he sleeps.  Lots of doctors for that.  We also have been working on his left ankle.  They haven't used the words Cerebral Palsy but I think it is safe to say he falls in that circle with all the talk about "tone" and whatnot.  

So we are really busy but I am so freakin' excited about this that I will try my hardest to at least read what you guys write and comment but we will see when I can write again.  I am so happy to have you guys!!!  Sorry about how long this is.

Thursday, November 6, 2008

I got this in an email the other day I thought it would be a good thing for many of you. I have not had a chance to go all the way though the blog yet, just glanced at it. Very neat if we can help make this happen.

The Utah Autism Coalition needs your help. Recent laws have passed in 8 states requiring health insurance providers to cover treatments (like speech therapy, physical therapy, and occupational therapy) for autism. They are working on a similar bill here in Utah. The only way these laws passed in other states was through an enormous grass roots effort. Check out the blog and see if this is something that interests you. If so, join the e-mail list, and maybe even volunteer to be a liaison for your legislative district. The bill will only pass with the help of parents, grandparents, friends, and professionals all over the state. Let Utah legislators hear your voice. This legislation is supported by Autism Speaks.

Join the e-mail list by sending your contact information to
Check the blog for updates:

Sent on behalf of Adrianne Andersen, Occupational Therapist, Primary Children's Hospital

It is Winter

Okay moms...what do you do with your kids indoors? Mine do so much better when they can be outside or being active and now that is has snowed we are panicked! Any ideas for great indoor home activities?

Wednesday, November 5, 2008

Welcome New Friends!

I noticed there were a couple new pictures on the sidebar, and I just wanted to say "Hello" and "Welcome" to both Katie and Suzanne. Suzanne, I've been reading your blog lately, and I love it! You are really inspiring! Katie, I hope you will feel happy and welcome here--we love getting to know new people on our site, and we love the connection we feel with other moms who understand what we are going through. I hope we get the chance to get to know you both better!

A Thanksgiving tradition.

I happened to be in Target the day after Halloween, and found myself walking past Christmas displays! As I walked around the store looking at other things, I realized that I was thinking about Christmas gifts, and who would be on my list this year. Why am I thinking this? I'm not ready for it to be Christmas! That's when I realized that they were playing Christmas music too!

What ever happened to Thanksgiving?!! Does this bother anyone else?

I like Thanksgiving. For more than just the food. I think it's important to be grateful for the blessings we have. My sister gave me a great idea to put a little bit more emphasis on Thanksgiving. At the first of November, she and her kids make a poster that says: "We Are Thankful For" Everyday, each member of the family writes something on the list that they are thankful for. On Thanksgiving they read everything off of their poster.
I have never done this before, but we started our poster yesterday. Already, we all seem a little bit happier. It's a nice change of mind frame to be thinking about the blessings you have, trying to decide what you can write down today.....

I know this has nothing to do with special needs. But I think it's a great idea and I wanted to pass it on. Especially because I'm thankful for all of you. My friends who truly understand. THANK YOU! and have a happy THANKSGIVING this month!

Monday, November 3, 2008

just thinkin'

I've always thought that as Moms to special needs kids, we have different responsibilities, as opposed to having more responsibilities.  I'm beginning to wonder.  I've been through such a barrage of doctor's appointments, therapies, specialists, tests and follow-ups over the last while that a melt down seems eminent.  It definitely seems like more. I'm craving simplicity.  It's all started me wondering if I'm not just trading soccer practice and dance lessons for therapists and doctors, but that I'm trading it for an awful lot more....ya know what I mean? I have a friend who told her husband that they are not like other people, and cannot do what other people do. I've said those same things in my mind about M.K.  'she is special.  she isn't like other kids.  She can't do the things that other kids do.'  I never thought of it in connection with myself or my family. I'm not sure what I think about it.  If we do - do more- is that why other people think we're supermoms?  Is it even possible to do special mom things AND normal mom things?   Or should we be telling ourselves that like our children, we cannot do all the things that regular Moms do?  My first instinct says that of course we can do it all.  Then my exhaustion kicks in and says, 'no - we do a lot of extra, special, stuff.  We shouldn't have to hold ourselves to the same standards  and then some. Really I think it's probably just a personal issue.  A matter of prioritizing and balance.  (something I'm not doing well at right now)  But it's an interesting question.....what do the rest of you girls think about it?