Life with Coco and Gigi... and Jack-Jack too!

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She's so not normal

There are so many facets to having a diagnosis that little is known about. There is a lot of fear of the unknown. But there is also a great deal of fear of what is known. Many people with children who have RS report having behavior problems with their children above and beyond the normal developmental issues. Up until recently we have considered ourselves lucky to have avoided that whole can of worms. Well, not so lucky.

In the past couple of months Abby has gone from a relatively passive and easy going child to a child with some very noticeable behavioral issues. This wasn't out of thin air. When we were going through the screenings for preschool we had to fill out a behavioral screen called the BASC. This showed that Abby has several behavioral categories that are clinically significant or at risk. So we knew some rough waters might be ahead.

We now have a child with very little impulse control and very little remorse. She hits and laughs. No amount of punishment has any effect. We don't really hit in our house... not that I think that would help the situation. It is so incredibly frustrating. We have been through plenty of tantrums with Grace but nothing prepares you for a child who simply doesn't care what you do, take away, NOTHING. She also doesn't care that much if she hurts someone else or hurts their feelings. I know, it sounds like typical 3-year-old bad behavior but you can't turn a blind eye in her case. We ignore it now or try to wait it out and we end up with a kid who has developmental issues and behavioral ones too.

Sometimes you wonder if it's the chicken or the egg. Is she being like this because she is so small and fragile. Almost like she knows that people feel sorry for her and will give her extra leeway? Is it part of her diagnosis? Is it part of her sensory picture? We really don't know. We can't ignore it but nothing is working with her. We're hoping maybe the structure of school will help get her more on track. I guess we shall see.

1 comments:

Michelle 8:37 AM  

I know it's not fair to compare your children to other people's children but I do it anyway :-P Also, I should really keep my mouth shut since I have NO experience with RS BUT...

It might just be a phase. We go through this sort of stuff with Ava every once in a while and I watch my brother go through it with his daughter and my friends go through it with their kids. Heck, we're going through it with Lincoln right now. We have a habit of chalking everything up to "phases" in our house, though. Helps me get through it. Anyway, I think it's a pecking order thing. She's testing you (& her sister).

I've noticed that sometimes Ava tries out new behavior after hanging out with friends and seeing what they can get away with - or just an ornery kid in the grocery store in the line next to ours gives her ideas. Sometimes she starts to act up when there's a lot of change happening (travel, company, sickness, etc.). She's also been known to turn nasty when she's bored or hasn't gotten enough mental stimulation recently. It's a tough balance to strike. Her phases have lasted anywhere from an hour to weeks.

During her phases it seems like punishment is useless. It is such a test of my patience and control and discipline! I don't know if my approach is the right one but I don't know of a better one yet. I just stick to it - keep putting her in timeout - regardless of her reaction. I think that it has to be sinking into her on some level. She doesn't have control while she's sitting in timeout, even if she's singing and laughing (& she knows that too). However, they do gain control when they get a rise/reaction out of you. This is why I also think it's important not to raise your voice. I digress. If timeout gets too out of hand then she's sent to her room b/c the rule in our house is no nasty attitudes around everyone else; if you're going to act nasty then you may do so in your own room and when you're ready to change your attitude you may join the rest of the family. I'm not a big fan of taking books away as a punishment but I've used TV ("If I have to talk to you about XYZ one more time then you will not watch any shows or movies today.") and toys (big ones - doll house, laptop, etc.). Of course, that makes the day much more challenging for me (& Linc) if I can't rely on TV for 30 minutes to get dinner ready in peace but it pays off in the long run and I just keep reminding myself of that.

You're right, it sounds to me like she's acting like a three-year-old...

I know it's probably not as simple for you but know that you're not alone...whatever comfort that might bring, HA! I know how difficult these times are, believe me, I do. Hang in there! Actually, it does bring me some comfort to know that other people experience similar things, especially when it comes to parenting.

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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