Update

I will probably write far less now that I have added online classes for me and am striving to strike a balance in all areas of my life.  It is good for me to be forced into a different identity other than “Kiran’s mom” – good for me to learn to prioritize other things.  Kiran is still almost always my first priority, but I am learning to prioritize my learning, other loved ones, etc in this growing process I find myself in.

That being said, I wanted to update on a couple things I am excited about for Kiran this fall.  Last week, he started his third intensive in the universal exercise unit (we lovingly call it “the cage”) for physical therapy.  We have high hopes for some strength and balance and confidence in his abilities to get to standing, stand, and even improve his walking attempts.  He has been doing such a great job so far, and we are just into week two.

It makes for a busy fall.  Preschool just started, and we are still getting used to that…and now we go to Childserve three afternoons a week, for a total of five therapy sessions there.  There are days I feel like all we do is run around.  And it’s only just begun.

We have had some really productive meetings with both of Kiran’s speech-language pathologists lately, from Childserve and the AEA, to get everyone on the same page with next steps.  As we start discussing trialing devices, we have decided to borrow a large ipad with his four core words on it (still plugging away at “go” “stop” “like” and “more”), along with a flexible mount that can be attached to his wheelchair, in the interim.  It sounds like that will be brought to school next week, and we will be allowed to bring it home to practice as well.  Kiran seems far more motivated touching a device and getting that touch/vocal feedback than he was with them just on a placemat in front of him.  It also works better than the little mac button we were practicing on, since ours can only do one word at a time and needs to be re-recorded every time.

There is a lot of hope and excitement for these steps forward.  Physical therapy and speech therapy are our biggest focuses this year.  He still has occupational therapy at both school and Childserve and vision therapy at school, but we are currently on a break from feeding therapy.  We really want to see where his gross motor skills can get to this year, especially in regards to walking, and we REALLY want him to start being able to communicate with us using language on a device.

Our team is seeing good things too.  As for physical therapy, our Childserve therapist let us know she does see him walking.  Someday.  Maybe with a gait trainer or walker for added support for the duration.  But walking.  This means so much, and we see his skills getting him there.  Our speech therapists are both seeing gains in cause and effect understanding, and our AEA SLP did a preference assessment for him yesterday with telling results.  In the past, Kiran hasn’t necessarily shown a strong preference for any item over any other, but he is growing in his likes and dislikes too.  It is amazing to see these preferences come out and to watch his personality really develop.

I’m just along for the ride.  This is Kiran’s path, and he is in charge.  It’s a long road.  It has taken us literally years of therapies and practicing at home and working hard to get here.  And it may take years to get to the next really big step on the journey.  But we are moving forward, and for that, I am thankful.

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