Celebrating Inchstones: I *HEART* school

Thursday, December 9, 2010

I HEART school

Asa's school that is!! I was so worried just a few months ago when we first started planning for Asa to start school. Asa has so many little issues that if you don't know what to watch for you'll be sorry before you know it! I can't believe it's only been 2 months since he started school and his teachers have him pegged! They've only had to drain his tummy 2 times! Wish I could say the same thing!

There was 2 schools we could choose from when we started his IEP. One class was very much like a typical preschool class. Busy kids, playing with toys, various levels of behavioral and developmental needs but I didn't see any as physically involved as Asa. Doesn't mean the weren't there, I just didn't see them at the time I toured. The second school had a "medically fragile" class. I almost pictured a miniture hospital with a term like that but it wasn't at all! There were gait trainers, therapy mats, touch screen computers, supportive seating, switch toys, etc in the room! It felt like a therapy center and it felt right for Asa!

We chose the second class and right now there is only one other student in the class with a teacher and an aide. In January another 3 year old will join them. That's probably why they know Asa so well, they have pleny of attention to give him!

He goes at least 3 days a week and sometimes on Friday too. He goes from 12-3, but I usually pick him up at 2 so I can get to Anna's school by 2:30. He has therapy 3 days a week and I'd like to send him on Friday but gas is getting so high that he isn't going tomorrow. And that brings me to my thoughts of loving his school today!

I wonder if I've made the right choices for Asa. Have I underestimated him and his skills? He is changing and growing and adapting so quickly that I always worry if I'm holding him back. There is a fine line between pushing Asa's limits and pushing him over the edge!! How much noise and excitement can he take? How much therapy can he handle at once? It is a fine line! As we talked about the gas and buses. His teachers reassured me that I was right and Asa's sensory and fatigue issues wouldn't allow him to ride the bus. He just wouldn't be able to handle it! He hates the sight of the bus. He trembles when he sees the bus stop at the end of our driveway. Then there is the fact that we live 30 minutes from the school, out in the boonies! If that's 30 minutes in my van just imagine how long it is on a bus picking up other kids! Did I mention that he tires out so easily that it isn't unusual for him to take a nap in the therapy swing? And he is only there 2 to 2 1/2 hours!

All this sensory talk led us to talk about the classes. His teachers also can't imagine how he'd handle a more typical classroom. He has done better than I could have imagined but I'm not sure he could handle the other room! They said when the computer or maintainance people come in he gets unhappy. Until this week when the nurse came in for the other little girl, he get bothered. They take him out in the halls and sometimes he can't handle the other kids walking down the hall in their little lines. Other times he does well. The good part is that his teachers get this! They are learning his cues! We'd all call this year a success if we just got to the point that he can handle school! Learning songs and colors will be icing on the cake!

But he is learning! He signs "more" and "please" often. He signs "school" and waves bye again! He seems excited to go to school. He doesn't necessarily get excited to get in the room but he gets excited to be "going"!!

I'm just so glad that he has this class and these teachers! I'm so thankful that someone else gets to play with him for a few hours a day!! We are still learning to adjust at home. The fatigue and transitions still aren't perfect but we are trying! A bath worked well for him yesterday but not so much me! We'll probably get a good plan about the time he is out for Christmas break!

Yep, I love Asa's school and teachers!

1 comment:

gg said...: This is how we feel about Bricen's school. It's a blessing to have other people care for your child and take the time to really "learn" them...to feel they don't view him as "just" a student, but rather as a child.; December 9, 2010 at 11:02 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!