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  • Writer's pictureHeidi Renee

Puzzle Pieces

While writing an email to AJ's teacher last night, I reminded myself that I promised to update AJ's gains.  I also realized that our little man has changed quite a bit over the last few weeks.  I'd say it started during winter break and has continued.  He seems more in tune with his environment, his eye contact continues to improve on a daily basis, and in general, he's just happier.  The biggest thing yet:  He had an entire week of good days at school.  AMAZING.

 So let's see what he's up to:

We began potty training the Monday after Christmas.  And YES, we kept it quiet as far as the blog goes.  I guess I didn't want to jinx the idea.  Having a child with cerebral palsy and thinking about potty training is scary.  Muscle issues + bladder, is this going to work? 

For AJ, it has.  He has done considerably better than we had expected.  YAY!   For those of you that are curious as to how we are training him, I'll put that in a separate post.   I figured that the time off of school was a great time to commit and be consistent with the potty idea.  Since school started up again, he's been there 6 days with no accidents and has gone on the potty at school.  GO AJ!

He is not yet able to tell us when he has to go, but if anything, we thought this could be yet another opportunity for AJ to learn to communicate with us.  He has signs of when he has to go and that first week gave us an idea of "when" he goes, so I think we have a good start.  The dogs are very confused with this whole potty training thing.  They don't understand why I say "do you have to go potty" 1,268 times a day and when I say it I don't take them out.  Rocky has designated himself as the potty helper, as he comes in, gives AJ "good luck going potty smooch" and then leaves. 

I would much rather rinse out cute "Big Boy" undies and pants and do more laundry then change pull-ups though.  It thrills me to no end that we use 1, yes, that's ONE, pull-up a day-at night when he goes to bed. 

The potty training has also lead to AJ being more aware of his lower extremities.  He has struggled with dressing in standing due to his balance/coordination.  It was difficult for him to stand and bend over/squat down to pull up his pants.  With the potty training, he was taking his undies off and putting them on while sitting down, which lead to his discovery of hey, I'm supposed to pull these things up.  We had a PT/OT session where they worked on dressing in standing, and getting up from a stool (to mimic the potty chair) and it's like he's a new kid.  He GETS IT.

It took a while to get him to visually pay attention to what he's doing.  If you've ever dressed AJ, he will gladly lift his foot/legs for socks/pants, but won't look down at what he's doing.  He now has a visual piece of it.  He's now able to stand against the couch and get dressed in standing, including pushing his feet down into his AFOs and shoes.  He is also able to assist with taking off his AFOs and shoes, including velcro straps and sliding his foot and lower leg out of the plastic AFOs. Which blows my mind, honestly.  Ever since winter rolled around, he's been in love with his jacket and mittens.  Oh, the mittens.  How he loves to put them on (he giggles when he hands them to you) and take them off.  AJ has made considerable gains in dressing!!

His left leg seems to be looser.  His arm is still a bit tight, along with more fisting in his left hand than I've seen in a while.  I saw an idea of another blog about a Montessori fine-motor activity that I want to try with AJ to see it that will help.  For now, we just keep offering things to him to the left, doing lots of two-handed activities, using the air cast, and his hand splint.  He took a stroke with a paintbrush at school the other day which was nothing short of amazing.  I wish I could have been there to see it. 

The boy has developed patience.  I never thought I'd say it.  In general, he's a lot calmer and zen-like most of the time.  When it comes to toys, he spends a bit more time trying to figure them out himself.  If he can't, he brings it to us and we verbally identify the object and then ask if he wants it "on" or whatever, followed by the attempt to get him to vocalize for it or sign "on". 

He has some huge auditory gains.  He will be in his room, hear me turn on the vacuum in the living room (down the hall), and come running.  That's called sound discrimination folks.  He knows when the dogs bark it means someone is coming in the door.  He recognizes the voice of Handy Manny (cartoon) on the TV, which astounds me.  Its the only show he'll watch at least part of.  Oh, I lied.  Mickey Mouse Clubhouse is the other.  According to his teacher, he's turning to novel sounds at school very quickly. He knows the difference between voices, he recongizes who people are (you can see it in his face).  Yesterday, one of our sitters, (who hasn't been here in a while) came.  He saw her sitting there, stared at her for a moment, then got a big smile on his face and speed-walked over to her. 

Feeding wise, I've seen some fantastic rotary chewing.  He was given a straw a bit too much over break, so he's battling with us about open cups, but hey, my kids drinking out of a straw.  Come 'on.  I stick to my theory, he'll drink when he's thirsty.  (Still no word on insurance approving more feeding therapy)

AJ's communication is the missing puzzle piece.  There are fragments here and there.  I'm calling them fragments for a reason.  Many have asked me why this is such a big deal.  Um, HELLO!  AJ needs to communicate in the world around him.  Effectively communicate.  That means a stranger or peer needs to be able to understand him. Right now, only those close to him understand his non-verbal cues.   Sometimes the things people say to me

So the fragments we are seeing...he has been pulling/leading us to things.  If he wants something that's in a different room than where he and I are, he takes my hand and leads me to where he thinks we should go.  If he wants me and I'm in a different room, he comes and LOOKS FOR ME.  Huge!!  He got up from the potty last week, grabbed my hand, walked three steps, and looked up at the sink.  Translation: "Mom, I want to wash my hands."  Grabs my hand and walks to his booster chair in the kitchen.  Translation: "Mom, I want to eat."  We are getting closer.  We just need that hook, line, and sinker. 

The video assessment for the Every Move Counts curriculum was done on Monday.  I was a wreck driving around Waukesha running errands that morning.  Hoping and praying he would do well.  Oh, who am I kidding?  I was hoping he'd be a rock star and show off!  He did very well and I was thrilled to meet the EI that lead the assessment.  AJ's school team has reviewed the video.  It was very enlightening and apparently educated them on a lot of AJ's communication.  On Monday we'll be viewing the video, and I am more than anxious to see it.  One step closer to completing the puzzle.

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