It's All Okay

Just a mom blogging about life with an autistic child.

Location: Canada

I'm a stay at home mom with two boys. Patrick is my youngest and has ASD.

Tuesday, July 29, 2008

Out of the blue

I've been procrastinating about this post. Because I'm afraid I won't do it right. That somehow I'll fumble the ball.

In the truck a few days ago older brother, very quietly and someone bashfully, said to me "Sometimes I wish Patrick wasn't autistic."

I didn't know what to say. They have a great relationship. Older brother has definately had to grow up a bit sooner than his peers (and had to put up with a lot when Patrick was very young, we had no diagnosis, and we were trying to get rid of some really difficult behaviour) but they've both been really understanding of each other lately.

Upon further inquiry, he couldn't really explain why, except perhaps to suggest that things would be a bit easier if Patrick's brain was more like ours.

I mumbled something about how yes, it was difficult sometimes, but that we loved Patrick and we needed to be understanding about the differences......I tried to get something in there about how if it's difficult for us perhaps it's difficult for Patrick as well. I tried to validate his feelings, agreeing that yes, having an autistic brother was perhaps more difficult but that any younger brother would be difficult sometimes. It was a weak, badly thought out response.

I messed up. I missed the moment. So now I have to go back and talk to older brother again. I have to get this right. Any advice or suggestions from those dealing with NT siblings??? Help.


Blogger Niksmom said...

I don't have any NT kids so have not had to have *that* conversation. But, FWIW, I thin you didn't "fumble it" at all. I do't think there could possibly be a "right way" to have this discussion with your son. It sounds like he loves Patrick and isn't saying he wishes he didn't have a brother. Of course he will feel that way sometimes; I think it's pretty normal.

That doesn't mean stop trying to help him find the gifts and respect his brother's differences. But he may simply have reached a point where he needs to express his emotions —much like we adults do periodically when we vent about the grief, frustration, depression or whatever we feel. We simply make room for the positive in doing that.

I hope you get some resposnses that feel more helpful than mine. Sorry...

Tue Jul 29, 10:00:00 AM 2008  
Blogger farmwifetwo said...

Does Ottawa have a Children's hospital?? Or a Children's Ctr like we have TVCC which is part of the hospital... That is where the ABA/IBI people come from.

Usually they have sibling programs for the NT siblings. Community Living may also offer some. Someplace to go where other's understand and you can "gripe" about it. Your local Autism Society may offer some as well.

You didn't drop the ball, but it's something to remember when you expect more from him than his peers will have to deal with. Make certain that he gets extra praise, a treat or Mom time alone or something.. as a "thank you". I'm already teaching my elder to be more responsible for the younger and help me.


Tue Jul 29, 10:18:00 AM 2008  
Blogger mumkeepingsane said...

Argh, I just lost my response.

Thank you both so much for your replies.

Niksmom, your reply was indeed helpful. Thank you for your compassion and support.

farmwife, yes, there are sibling groups about an hour away, they're offered by Children at Risk. I've always dismissed them because we're so far away, but thanks for reminding me that they might be necessary.

We definately try very hard to make sure older brother gets lots of alone time with us, extra 'treats', etc. It's something I've always worried about.

Thanks again, both of you. I really needed to hear some of the things you wrote.

Tue Jul 29, 12:06:00 PM 2008  
Anonymous Anonymous said...

I think you answered it just fine. Having grown up with a severely disbaled older sister I understand the stress that comes from having a sibling with a disability.

It is important to acknowledge that things can be hard for your NT child in handlilng the extra stress that comes from having a sibling with a disability.

There is stress from having to always explain or wondering when not to explain your sibling to friends, dealing with looks in the community, working to communicate and care for your sibling, sometimes being placed in the care giving role as a child, and the list goes on.

It goes a long way to acknowledge this stress with your NT child and to also be sure they are getting plenty of positive attention.

I remember wrestling with so many things in my head in regards to my sister as a child that it was sometimes very overwhelming. For me, that was why I sometimes wished she was not special needs. It did not mean that I did not love her or accpet her differences. It was just that I felt so much extra pressure and stress so often. My parents did well at letting me talk and vent sometimes. Also, they helped me learn ways to explain my sibling to my friends or to not explain. Even to this day, I struggle with that. Do I prepare my friends ahead of time? What should I say or do I need to say anything at all?

I think you answered well. Acknowledge that it is okay to have those thoughts too so that he is not afraid to come to you with concerns about his brother.

You are a great mom. I think your post is a topic that many people don't discuss and many parents have no clue how difficult it is on NT siblings.

Wed Jul 30, 07:44:00 PM 2008  
Blogger AnneC said...

I remember being mad initially that my little brother wasn't a girl, because I really had wanted a sister -- my parents just basically emphasized that my brother was a boy and that was that, and I just got used to the idea.

The main thing I think is to just make sure you point out that autistic isn't something you can wish away -- that it's as much a part of someone as, say, being a boy or girl is, so the best thing to do is get accustomed to that person on their own terms.

Wed Jul 30, 11:43:00 PM 2008  

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