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Friday, August 09, 2013

Disability Envy

I think Lucas is having a bit of 'disability envy.' He wants to have a disability.

I 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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14 comments:

Paula said...

Can you get a sticker book for him? At the end of each therapy appointment that he sits quietly, he gets a sticker. When he gets x number of stickers, he gets a special treat.
Can you bring something special that he only gets to use/do when Kayla is in a therapy session? A special iPad game or movie?

Mom24 said...

No advice, it hurts my heart though, I can imagine how hard it is for you to know what to do. Good luck.

krlr said...

Ouch. Yes, on the sticker roll! Or maybe start a sibling sticker fund jar - surely other parents are dealing w/this too? Unrestricted e-game time? (30 min/day doesn't seem THAT bad). Or can you read to him in the waiting room... HIS book choice? Are you ok leaving her there for a few? I know Matt has taken the boy out for a quick ice cream ($2 popsicle from the gas station).

Sorry. Some of this stuff is hard! IHOP does fix a lot of things though, too. :)

DandG said...

Would he like sunglasses or toy glasses?

You can also help him see the things that he does that Kayla doesn't. Talk with him about how she might feel when he does soccer or theater. Fair is not necessarily the same as equal, and it is important for all children to learn that other kids have different strengths and weaknesses.

ahoy.jenni said...

I must admit it did make me smile, 'disability envy' :-)
What if he has his 'therapy' to do while Kayla does hers. I agree with the other comment, use an ipad with his special apps on them (reading, writing, whatever..) and they are only ones he does while she does her therapy. Make a big to do about it, saying you decided he needs some therapy too and you are going to arrange it.
And keep stickers and special treats in the glove box of your car for your son in case the therapist is a scabby one and doesn't give him a sticker :-0

stephanie said...

My 9 year old will say "it's not fair that Sarah gets _______." I'll tell her she's right. But it's also not fair that Sarah may have had a seizure this week. Or that at 5 years old, she still looks like she's 3.

I'd buy Lucas a sticker book with a pack of stickers in the car. Then once you are done a session, he gets his "good boy" reward in the vehicle when you're done! Or a small bag/box of dollar store treats?

Grandma said...

Will he have to go with you when school starts? Have you thought about maybe one Saturday you take him to do something special. Just you and him as a reward for all the patience he has when it comes to all of Kayla's appointments. I'm thinking of something along the lines of going to the Aquarium or maybe you could take him to that new kids movie that is coming out Planes. This way he has you all to himself and it something different and special just for him.

teal915 said...

My daughter has said tho he along those lines from time to time. She's older than Kamdyn, but she notices the special attention more, so she is usually the one who tends to say something. My son doesn't seem to care much yet. I'm sure we will have to fi d different things over the years to balance everything out. My daughter went to a horse camp this summer that no one else got to do. My son played tball We also try to do a special Mommy and me and then Daddy and me days. That way, they get their own special day.

Fiona said...

OK, this may be totally out of line (forgive me if it is), but I have 2 'neuro typical' kids.

They are less than 2 years apart in age, and about a million miles apart in personality!

Every week Emily (age 6) sits through several hours of her big sisters music lessons. When the weather is good I take her roller blades or scooter, and we play in the car park. Sometimes she does her homework while we wait. Sometimes she eats a snack. Sometimes she just sits (or tries to sit).

Every week Sofie (age 8) sits through several hours of her sisters gymnastics practice. In Winter we pop to the ice rink next door to skate. Sometimes we just talk, and sometimes Sofie gets new book to read.

I guess what I see here is a typical family. Everyone has different interests, and different activities. Sometimes we need to wait, and acknowledge the other person's needs?

Hanging around is a part of life. As a Mom I try to keep it interesting and fun, but sometimes we just have to wait.

Janina said...

Could you sign your son up for some special activities -- riding lessons if he's into horses, animation camp if he's into comics? Set up regular mommy son dates? Because it sounds like the boy has legitimate complaints that his parents are spending all their time, effort, energy and money on his sister.

Michelle said...

Thanks for your suggestions Janina. However, Lucas has not complained about anything... and no, we are not spending ALL our time, effort, money and attention on his sister.

He only said he wanted a disability because he wanted to go to horse camp since it was only for kids w/a disability. We didn't pay for Kayla to go to that camp.

He went to VBS while she was at horse camp. He had 2 more weeks of VBS while Kayla was in summer school because he likes VBS and wanted to go.

I do have special treats with him - we go to IHOP and Dunkin' Donuts when Kayla's in school since she can't eat at those places.

He was signed up for both soccer and T-ball.

I was only pointing out that I felt bad that this summer Kayla started going to therapies 4x a week and he had to sit around in the waiting room. I already said I would be rewarding him with something every time Kayla got something from the prize box at VT.

It's not like Kayla is going out on fun field trips and he's not ... she's doing THERAPY. It's not something special she's doing ... she needs the therapy.

Some of this post was tongue-in-cheek talking about "all" the attention you get when you have a disability or special needs. All those things I mentioned don't apply to Kayla. She doesn't have a PCA. She doesn't have multiple doctor appointments and specialists that take up so much time.

He's not being neglected by any means, thank you very much.

Anonymous said...

I think he will live without the sticker.

Anonymous said...

Awww, I totally understand your feelings for Lucas! It is hard to wait and kids just don't have the perspective that adults do so it does look like Kayla is getting extra special attention to him even if that's not the case. Definitely a tough situation for you and you are an awesome Mom to be so in touch with your children's feelings. I don't think giving him small rewards for good behavior is spoiling him- hopefully he will have positive memories of earning treats instead of resenting all the time he was stuck waiting. I think you are doing a great job with both Kayla and Lucas and I'm sure parenting a child with special needs has challenges that the rest of us without that experience cannot understand. And, I agree... stickers are a dime a dozen and simple kindness could have gone a long way :) Good luck!

GB said...

Some helpful suggestions here, some unhelpful. I hope you found the balance you are so thoughtfully and commendably looking for Michelle.