Thursday, February 7, 2013

More answers, but of course, more questions...

Jax had his final evaluation at the Child Development Center today. Next week Friday, we will meet with the entire team for the final meeting to go over everything.
Jax did great with his evaluation today, which was for his speech. The therapist that worked with the boys just loves them and wanted to stay and play with them all day (be my guest!). She said that Jax talked her ear off and she barely had to ask him any questions, because he just kept on talking!
In the end, she said he has the exact same disorders as Brady, but he is not as severely affected and/or he's overcoming it quicker. She said they each have a mix of Apraxia/Phonological Disorder. Jax tested around a 3 yr old level. I think it was just around 3.5 for receptive understanding, just over 3 for receptive language, then right around 3 for expressive speech, but under 3 for expressive language. That all seemed about right. She thinks Jax is talking better now then he was the day she reviewed Brady about 6 wks ago, and I told her that he's just blossoming. He is mostly understood if you know the context of the conversation. Although last night he repeated himself 100x at bedtime and I still didn't know what he was asking me for, so it's a work in progress.

We talked about how this year's extra speech (3x/wk) has really helped Jax, and Brady is starting to approximate words a little bit now, but she was really glad to hear that Brady's IPad came in at school. She said he'll definitely be using it often.
She thinks Jax will have pretty good communication skills in a year from now, which will make him much better prepared for kindergarten. I told her I'm worried about Brady, and she said that while she believes Brady will be able to speak some day, she can't for certain say he'll have great expressive communication by kindergarten, or if he'll always struggle with some sort of impediment. There's no way to know, and anything can happen with all of that. But for now, he really does need to start getting his thoughts, feelings and ideas out, so the assisted device should be really helpful.
We've got two really spirited smart and outgoing personalities on these boys, which will really help with this disorder socially. They WANT to play and interact with others, so it only pushes them to get the words out.

The therapist is going to look into getting summer speech sessions for the boys. The school district offers a few weeks of therapy in the summer for kids with extreme need, but there's still too much of a lapse in coverage, so hopefully the CDC may be able to help bridge that gap.

The conversation went into how Apraxia is affecting other parts of the boy's life and development. The therapist thinks it plays a big role in Jax's lack of being able to learn to chew and swallow his food since it's a motor planning movement. I brought up how the boys both struggle with other motor planning movements like peddling a bike (they still can't figure out the movement with their big wheels or tricycles) or using a writing tool to draw or write any letters (even though they know the letters) or buttoning clothes, using zippers, using scissors.
I made Valentines with the boys yesterday for school and their assignment was to write the first letter of their names on the cards. I thought it would be fun.
I took each boy individually and we went over and over and over how draw the letter B or J. It was such an epic fail that each kid cried and asked to leave the table. I couldn't believe how hard it was for them. They also don't understand directional cues of draw "down" the page. Or draw "out" or "over" or "under" - prepositions make no sense to them. Brady would put the crayon on the page and draw up, so I let him, but told him to draw a circle next to the line to start the B... he couldn't do it. I was taken aback a little bit by how hard it was for him to comprehend where the markings belong to create a letter even though we traced it over and over.

I guess I took it for granted that they would know how to draw the letter of their name or something close to it since they know the alphabet and I knew they did a lot of art at school.

Jax was next and he had the same problems. I had him trace over a J many times with my hand on his, and when it was his turn, he drew a line from the bottom up and that was it. I told him to loop the bottom and he would sometimes make an upside down J or would put a mark next to the line, but it just wasn't working and he too cried, and got down.
The therapist told me that that whole situation is most likely linked to Apraxia which may actually be a full system diagnosis of DYSPRAXIA.
She asked if the boys needed to be taught a certain movement repeatedly for other things that seem like they should be easier and I said YES, simple things like teaching Brady how to use the Wii remote to throw the bowling ball. Jay must've gone over it with Brady for hours, then he mastered it a few days of repeated modeling. Or showing them both how to throw a ball up and OUT to get it into the kiddy basketball hoop. It took weeks, but they figured it out and love it. So they're teachable, it just takes sooooo long.

The therapist said she'll contact an OT and/or PT from Childrens Hosp or get me their information and give it to me next Friday at our meeting. She thinks we need to explore the idea of Dyspraxia as an answer to the full system issues of the boys overall.
Could it be? An answer, to everything?
Why they won't potty train, why there are feeding issues, orthopedic issues, fine/gross motor issues, speech issues, delays in walking and most milestones, why the teachers thought ADHD, why CP was explored, the list goes on.
It certainly does explain everything, but I guess, as usual, we'll have to wait and see if a professional thinks this could be it. We are in the business of getting answers right now, so we shall see.

She mentioned that the boys will need to be under strict surveillance for reading disorders in the next few years as well, but we'll cross that bridge when we get there. She seemed to have a hunch about something, but it's probably best to just leave alone for now.

In normal news around the house, everyone is doing well. Jason is supposed to fly home tonight, but with all this snow, we'll see if he has a plane to even get on!
Jax hasn't been doing well with his double feeds at night lately, so I'm going to experiment tonight and see if we can avoid a 3rd night in a row of vomiting all over the bed (poor bean).
We have a quiet weekend ahead, so I think a snowman is in order!

Brady attempting some B's before it went sour.

My goons with all their valentines for their classmates.

1 comment:

Michele said...

So interesting! It does explain pretty much everything, doesn't it? I wonder why nobody thought to put it all together before. I think my eldest has a very mild case of it - she just learned to ride a bike at age almost-9 and still won't wear shoes that have laces. But she's fortunately never had much trouble with speech. Keep us posted!