Thursday, May 17, 2012

The 'W' Word...

We have had a Kid Kart Adaptive Stroller for a long time.  I remember distinctly the day we went to pick it up at the hospital's seating clinic.  We went as a family - Brian was still an infant!  I definitely wanted Ed's support.  I'm not ashamed to admit that it was a little tough for me to accept that my son was getting the "w" word - a wheelchair...



...which is why I was glad that this was called an "adaptive stroller."  It gave his little body, which at the time had such little tone, a lot of support.  We bought it with two different bases - a stroller base with wheels and a push bar and also a hi-lo base for inside.  The base for inside use has a hydraulic lift that can lift the seat up high or make it flat almost to the floor.

We used it for quite a long time - but then Gavin started to get a little stronger.  I wanted him to have more opportunities to control his own body and not get reliant on adaptive devices holding him up or in or on anything.  It seemed like a bold move - but I think it paid off.  Gavin's trunk control has surpassed what anyone ever thought - and he can sit for short periods in a chair with nothing holding him in or on!!  

Like in this photo:

Or, hello?  Who ever saw THIS coming???

All that to say...it felt weird the other day when I suddenly decided to bring the Kid Kart back up from the basement.  I had to figure out how to make adjustments to it myself so he'd fit in it again, but it wasn't too hard.  I brought it back for a few different reasons.  If I'm honest with myself, Gavin will really need seating like this when he goes to school.  He doesn't have to stay in it - but it will keep him from crawling out of Sara's arms or fighting to sit still during things like "Circle Time" or any other class activity!  And with the hi-lo base, he can sit right on the floor with the other kids without (yuck) being on the floor and possibly laying or...licking...said floor.  Or it can be lifted up to work at table height.  My concern with sending him to school in this has changed because he's now able to go with Miss Sara (best news ever).  She can take him in and out of the restrictive chair throughout the day.  I don't have to worry that he's sitting in it the whole class day.

I also thought it would be good for him to have another play option during the day.  It's easier to get him to focus on a book...or the iPad...when he's sitting still in a seat.  Already he and Sara have sat by the window for bubbles...playing music...and working on his iPad.  Gavin has loved it!  And, finally, it's another way to keep him upright lately.  His allergies are out of control this season.  It sounds like he's snoring all day and night.

Today was the first time he used the Kid Kart in therapy and it worked out great!  We brought him up to the kitchen table and he (and Brian) worked on Miss Janna's puzzles.

Once Sara and I saw how well it fit right under the kitchen table, we both looked at each other with that "are you thinking what I'm thinking?" look.  We may start using this instead of a highchair to feed him at meals!  I'm concerned about it getting messy with food (Gavin isn't the neatest eater at times!) so we'll just have to see how that goes.  The Kid Kart isn't the easiest to clean and I'd hate to wreck it with food, milk, vomit, etc.

Miss Maggie came after Janna for Gavin's speech therapy.  After working on popping bubbles with his lips for a little while, she asked if Sara could take Gavin in the other room to play so we could talk.  She wanted to sit and come up with a game plan for the iPad going forward.  We need to start using it more with him and making it more accessible to him.  Some examples are to have snack choices loaded up and offer him a choice of two each day.  Whatever he presses will be what we give him - even if he presses it by accident.  Hopefully it will make him feel like he's participating in choice-making...and he'll soon get the idea that he has to press what he wants to get it.  She also wants us to start working on "Yes and No" on the iPad.  I'm hoping he understands the concept.

I'm looking to purchase a mount for his iPad that can attach to his KidKart.  If anyone with experience with these has any suggestions or recommendations, I'd appreciate it!

It moved me so much that Maggie wanted to have that meeting.  I know that sounds silly, right?  It's her job - this is true.  But the fact that anyone gives thought outside of work to come up with ideas or suggestions to help my son...it just moves me!  Honestly, all of Gavin's therapists are so invested in him - he is so lucky.  Just yesterday, Miss Stephanie was here for OT.  She heard an idea and immediately thought of Gavin.  Gavin tends to smack or swipe the iPad screen with his whole hand.  She heard the brilliant idea to get finger gloves and cut off the index finger.  This way, the only thing that will make the iPad work is that ONE finger!  Now I'm on a mission to find very small finger gloves for my little guy!!  It's hard to believe that in September we will have had this group of therapists for two years.  It will be very hard to say goodbye to them.

I had big plans for tonight.  Miss Katja asked if I would attend her graduation from college and I was SO touched...and felt very honored knowing she was given limited tickets.  This morning I woke up with a dreadful toothache.  And before the clock hit noon I was scheduled for a same day root canal.  Trust me - I'd rather be ANYWHERE than a root canal.  I feel so sad that I can't be there for Katja.  It inspires me that a young girl can come to America as an Au Pair by herself - knowing only a little English.  A few years later she's not only fluent, but getting A's in college while working!!  I feel proud of her as if she's my daughter.  Congratulations, Katja!!  We love you!!



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