homeI imagine kids who have a sibling with a disability, or special needs, might go through this at one time or another - especially if they are the younger sibling.
Because face it - growing up with a disability usually gets you a lot of attention.
There could be multiple doctor appointments throughout the year with different specialists. Multiple therapies the child goes to; or therapists that come to the house. There could be a service coordinator, a personal care assistant, respite workers who come to the house all for the child with a disability.
The child with a disability might attend camps that are only for kids with disabilities. There are special events, or opportunities that are only for the child with a disability.
There are designated days, months, and organized fundraising walks that are specific to the child's disability. Opportunities for raising awareness, which to a younger sibling could look like multiple opportunities to celebrate -and bring attention to- something unique and special about the child with a disability.
The child without a disability only has their birthday to celebrate!
We are trying to balance the attention-scale so Lucas can feel just as much valued, appreciated, and celebrated as Kayla. He had T-ball, soccer, and his preschool performance that were all about him.
But sometimes it's still hard to find that balance.
At the beginning of summer Kayla went to a horse-riding camp that was set up through the base's Exceptional Family Member program. The night before the camp I explained to Lucas where Kayla was going, but that this time it wasn't for siblings too (a lot of times things we've done that are disability-related include the siblings). I told him while it wasn't only for kids with Down syndrome, it was for kids that had other disabilities as well.
He said, "I want to have a disability too so I can go to horse camp."
That was my first clue that he's really starting to notice the attention and focus that surrounds Kayla having Down syndrome, or a disability, or a special need, or being differently-abled. Take your pick!
Until recently Kayla's therapies didn't really have an impact on Lucas. Lucas wasn't born when she was getting Early Childhood Intervention in the home. Since then she has OT and ST in school. When we first moved here 3 years ago we did have private OT come to the house for several months, but she included Lucas as much as she could, and that has sense ended.
Last year we started ST outside of school, so once a week Lucas got used to going with Kayla to her ST and waiting in the waiting room.
This summer we increased the ST to 2x a week (it's only 30 min each time.) Then we added Vision Therapy to the schedule which is also 2x a week. All of a sudden on Tues and Thur we now go to VT and ST. That probably feels like a lot of waiting around to Lucas.
The first time Kayla went to VT for the initial evaluation Lucas was in the room with us. At the end the therapist let Lucas pick something out of the treasure box. She told him he couldn't get something at every visit but he could get something this time because he was so good, quiet, and patient while Kayla did all of her activities.
The days leading up to her next visit Lucas kept asking if he could get something out of the treasure box just this next time and then not again after that. I told him I didn't think so because the therapist already gave him something the first time and said he couldn't get something each time.
That next week during ST Kayla came out with a sticker. Lucas asked the ST if he could have a sticker (she wasn't Kayla's regular therapist) and she said to him, "Can you have a sticker too? Did you have speech therapy?" And I guess that was supposed to be Lucas's answer. I have to admit; I felt bad for him. He asked very nicely. He waits patiently in the waiting room. He plays quietly in the kids' area. He has to go to 4 therapy appointments a week with Kayla. And it was just a sticker - aren't they like a dime a dozen?
With Kayla's VT the kids get to pick something out of the treasure chest at the end of every session, but when they get 25 check marks they get to pick something out of the bigger prize box. And they get 3-4 check marks every session for working hard, so it doesn't take 25 visits to get to the big prize box. I told Lucas that every time Kayla reached 25 and got the prize box I would give him something too so he's being rewarded for being so good in the waiting room.
Now Kayla has to get glasses and has tried several pairs on. Lucas wanted to try on glasses too and was hoping he could get a pair. He had his appointment yesterday and he checked out with 20/20 vision. I told him he wasn't going to need glasses. I asked him if he was ok with not having glasses and he said yes, but he wanted to do vision therapy like Kayla. When I asked why he wants to do therapy he said, "So I can do all the fun stuff that Kayla is doing in there. I want to try all those things!"
Knowing what they have in the office for therapy and the different things they do I can see how it all looks like 'fun' to Lucas! And having to do it 2x a week I can see how they need to try and make it 'fun' for the kids who are doing the therapy too.
I tried to explain to him that he was lucky he didn't have to go to vision therapy because that meant his eyes work the way they are supposed to work; I said if they didn't he wouldn't be able to read as well as he does now and he can see how Kayla has trouble reading. I'm don't think I completely convinced him that it was better not to have to need vision therapy!
I try to praise him as much as I can for his good behavior in the waiting room. I know I should try to do more one-on-one things with him so he's getting attention (we did go to IHOP a couple times this summer for breakfast - just the 2 of us. That's always been one of our little treats together since Kayla can't have wheat.)
Beyond that, is there anything else I can do to help with his 'disability envy'?
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