Tuesday, December 28, 2010

Special Needs Sibling Syndrome

 A shirt I got our son for Christmas - 
he had enough grace to laugh at it, 
and said he'd wear it for his teacher next week.

I really think there should be something called Special Needs Sibling Syndrome.  As hard as it is to be the parent of a child with special needs, it's got to be just as difficult to have a brother or sister with special needs.  I've thought that a number of times over the years since our daughter was born, and more frequently as she's gotten older.  This morning I wasn't even awake before she was upstairs, in bed with me, upset about yet another difficult interaction with her older brother.

His Asperger's Syndrome means that he's got normal intelligence, but delayed social/emotional development.  (Asperger's is far more of a social disability than anything else, in my opinion.)  The general rule of thumb for kids with AS is that their social/emotional maturity lags well behind their chronological age, so that generally they seem to think and act about 3/4 of their real age until well into their 20s or even early 30s.  That means that right about now our daughter is starting to surpass her brother's emotional maturity.  It's like living with twins, emotionally, except one is several years older and starting puberty.

It's been hard for her, living with her brother.  Sometimes he can be quite nice and considerate, but other times he can be quite rude or mean to her, downright selfish and nasty, and his behavior can change with whiplash speed.  Some of that is just typical brother behavior, and typical moody preteen boy stuff, but sometimes it is definitely related to his AS.  Younger siblings just aren't born equipped to deal with that kind of stress in a family relationship.  When our daughter was younger, we explained to her that her brother was a bit different than other kids, more impatient, less able to control his impulses, and sensitive in ways most people aren't.  That seemed to be enough of an explanation for her, for a time.

As she's gotten older, and his behavioral issues have continued, she's taken his problems personally, and become  very angry with him, and with us as her parents.  She doesn't understand that social learning for her brother is a matter of repetition over YEARS, learning each new skill over and over in each new setting.  She struggles with his narrow comfort zone, which is an autism "thing" - that controlling his environment and the people in it is a matter of emotional security for him.  When things aren't as he expects them to be, he gets angry because he gets afraid or uncomfortable.  Controlling people is just an extension of controlling his surroundings.  That doesn't make him RIGHT, it's just a way to understand his behavior.  And it's very hard for our daughter to understand that she's not WRONG just because he's trying to control her, and that we're not "giving in" to him as we struggle to teach him and help him modify his behavior. The Lord knows we've talked with him often enough, in as many ways as we can think of, about how to treat other people and handle social interactions of all sorts, and especially how to treat his sister.  He's earned his fair share of time out, lost privileges, and extra chores for being hurtful to her and others.

I think we had a good conversation with our daughter this morning.  My husband came in during our talk, and helped me out with the explanation (and a well-timed snuggle with his little girl).  We tried to tell her that we have to discipline both of them when they hurt each other, and that her brother's AS doesn't mean he can just "get away" with being rude.  We pointed out that for him, the world is a very scary place, because he doesn't understand how other people think.  Being afraid makes him act out.  We told her that we all need to help him where we can, and not provoke him or take advantage of his weaknesses. (That's something she figured out how to do when she was 10 months old, and realized that scooching over to the fireplace screen and banging on it would send her brother totally ballistic.  It was great entertainment - for her.  Things haven't changed all that much since then.)  We explained that sometimes she will understand the world better than he will, and that in some ways she'll be ahead of him socially and understand people much better than he will as they grow up together.  We asked her to show him mercy when she can, and to stand up for herself when he's being obnoxious or hurtful.  Heaven knows we don't intend for her to be his doormat, or anyone else's.  But, under the circumstances, we have to find a happy medium in dealing with his needs so we can all live together as a family.  I don't know how much she really understands about his Asperger's, but I'm sure this isn't the last conversation we'll be having on this topic.

Do any of you have helpful advice about dealing with siblings of your special needs children or grandchildren?  I'm always open for new ways to handle this issue.

3 comments:

  1. I know my experience in this area is vastly different than yours, and not nearly as lengthy, but one thing that helped build understanding for our boy when dealing with the girly was to ask him to imagine what it would be like to be able to see physical bandages on the girly when something was wrong. We talked for a while and he realized she would probably have several bandages on all day everyday. This made him realize how hard her day must be, and that she definitely needs to be treated more gently, if not by the world, then absolutely by her own brother. We have talked about the fact that someday we won't be here, and he may need to help her make choices in life and guide her always and what a huge undertaking that is....and that if they don't have a good relationship neither one of them will be willing to make it work. I also talked to the girly, and asked her to think about how her words hurt at times, and what it would look like if when her words hurt someone how she would feel if she had to see bandages on them....it definitely made her think, but it did not stick. So, now when she loses her patience or meltsdown and gets into a snit over something, we just say 'who needs a band-aid?' to made her realize she is taking things to a hurtful level.

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  2. I like that idea, Blondee - I think I'll try discussing the bandage image with both kids. I'm really sick at heart over the hurtful things our kids say to each other, and I feel like they're not getting just how important it will be for them to get along with each other throughout their lives.

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  3. Well, our experience isn't that the kids say deliberatly hurtful things to eachother, it's more impatience on both sides, and intolerance for flexibility when flexibility and grace are needed. We did have a time where the boy picked up a few not so family friendly phrases and would tell the girly to 'back off' or 'get away from me', which isn't that bad when compared to some situations, but is absolutely not tolerated here. So we changed our routine. When saying grace at the dinner table, we take turns saying the blessing and whomever says it has to thank God for one genuine trait/quality/ or kind thing the other individuals at the table posses or have done that day. No repeats and no sarcasm or mocking/ humor allowed. This also brought about a great change in their attitudes toward eachother because sometimes seeing the itty bitty things they were grateful for made them realize how little it really takes to make a difference in eachothers day. This also worked out well for the spousal unit and myself.

    Hope this helps! :)

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