Celebrating Inchstones: Finding Asa's voice

Wednesday, August 31, 2011

Finding Asa's voice

I didn't realize the link didn't take! So sorry, try this....

http://www.facebook.com/wishgrantedproject?ref=ts

I'm trying to get used to this tablet and blogging on it.

Asa went to school today. I tried to tell his teachers that he was pretty crabby. Sure enough when I picked him up he was in a mood! I think he did OK most if the day. Its just that when the teachers and therapist have a plan and goals he usually doesn't want to go along with it! Imagine that! The teacher said that while Asa wouldn't work for the PT, he did the same work with another person in the room. Leave it to him to not follow the game plan!

He has been scheduled to work with a person (I forgot the title) who will recommend a type of communicator for him. That work started today. My understanding is that they will try several types of things and see what works best for Asa.They'll then try to get insurance to pay for my boy a voice. That's what I walked in on today. A therapist was wanting him to work the cause and effect game on the computer with a switch button. And while this is normally an activity he likes to do its a whole different story when someone wants him to do it!

Right now we use PECS (Picture Exchange Communication System) cards. I have Asa's cards on pieces of contertop samples, tied together with a zip tie that I can then clip onto his wheelchair or carry with us. Asa really likes the tiles and cards and mostly we use then by us showing him the thing he has chosen. For instance, if he is coloring I'll get the card with the crayons on it and talk about how he is choosing crayons. But just this week Asa sorted out 3 cards and handed them out to me. I mumbled something in response but he stuck them out to me again. The kicker came when he stuck them out to me again and signed "please". It was only after he signed that I saw he was handing me the "cookie" card!!!! Of course I jumped up and found him a cookie, well a pop tart but that's the closest thing to a cookie that he can eat. Later I did find a WhoNu? Oreo cookie and broke it up for him. I think he'd just soon have the softer pop tart over the messy Oreo. On a side note, have out tried these WhoNu? Cookies. They are supposed to be healthy but taste like a real cookie. I think they are pretty good. I won't buy the Oreo again but the chocolate chip are good. Anyway, here's a pic of the PECS cards Asa handed me!

I've also been using my iPhone as a communicator for him too. My favorite app is the Answers:YesNo by Simplified Touch. Its a basic 2 button screen so he can make choices. At first the app only did Yes or No. On an update though I started being able to program the 2 choices. He really stared to understand this app when I programed "Pop tart" and "Pedisure" as his choices. When he picked "Pedisure" he got the cup if Pedisure instead of the Pop tart that he really wanted! He still isn't great at the choices because he really likes to just tap, tap, tap!

A more involved app is TapToTalk. You can add your own albums and pictures but so far we just use the basic free ones. I use this often when Asa is having a meltdown. I can go to the emotion page, choose the frustrated face, and then "I want to relax" button. Then we lay down on the couch while he pokes my ears until he calm and ready to face the world again. We also use the drink choices. I tap the milk or juice choices and Asa will hit the soda button a million times in a row!

I also use TapToTalk on the tablet and that was a biggie in deciding to get the tablet. Sadly the android market doesn't have any of the other apps or anything similar.

I've also toyed around with MyTalk and like certain things about it. Its very easy to take a pic of the object and use the app right away. Again I haven't really tried to change the settings though so I can't verify the ease of use overall.

All of these apps are cheap, cause that's how I roll! In fact I think the yes/no was. 99 and the other two are the free versions. These programs can be very expensive but if the freebies work then I'll use it!!!

I'm not sure what the school will decide. And don't really care as long as he is able it tell us his needs and wants. At some point it'd be great to carry on full conversations but right now we just need the needs and wants! I wish he'd pick up signing more easily. There is no equipment or programs to load or buy or carry around. Today he actually signed "I love you" to the dog! Complete with the point to the dog!! Even when he signs it to us, we don't get the point, just the "love"! My deepest hope is that I'll hear his sweet little voice saying Moma or Daddy!!! Until then we'll keep on trying to find the best way for him to share his ideas and thoughts with us!

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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!