Monday, October 13, 2014

Siblings of Special Needs Kids

my sister is my homie
Day 13 is a return to the serious...Siblings of Special Needs Kids.  I want to handle this delicately.  I don't want this to be about how great kid A is at "handling" kid B.  But I'll give credit where credit is earned.

There is no medal of valor given to parents for loving their special needs son or daughter.  You love your children regardless of their neurology, physical or mental needs, because if you don't, then you're not really a parent at all.  You can (at least here, in the safe confines of Just a Lil Blog) acknowledge that there are some additional hurdles to jump, and barriers to climb, but when you jump them, or climb them, you should expect nothing more than a slap on the ass, or an "attaboy", because although parenting is a choice you made, there's no down-side to acknowledging a job well done.

But the brothers and sisters of special needs kids have to be looked at separately.  They didn't make the choice.  They don't have the same emotional/mental maturity that parents are expected to have.  They can be petulant, sullen, selfish, and spiteful.  But so many of them instead gain perspective far in advance of their years.  Patience, maturity, perspective, and sensitivity.

I once bit my tongue to keep from scolding Emma about a 'cure' for Lily.  I think she had written a paper for school about autism and her little sister.  She'd written about curing Lily and part of me immediately wanted to tell her about insensitivity and beat the "eugenics" drum and with difficulty I stopped myself with her, as I often do with other parents, and just told myself, "This is her path.  Let her find her way."  And I did tell her that sometimes the topic of "cure" can make people upset, because some people don't want to be cured, that talking about a cure makes them think you don't want them around.  But I didn't do it before she turned in her paper.  She was 9 at the time.

I remember thinking how unfair it would be to hold her understanding of autism or disability or disability rights to the standard that adults expect other adults to adhere to.  I remember thinking how, even that can be unfair at times, when adults who just want to find their way and help their children are scolded and browbeaten for using "the wrong words".  And without making this seem condescending, I remember thinking that for those parents, they're in sort of the same place Emma was when she was trying to wrap her mind around it.  That just as Emma's opinion will grow and mature and change, so too did mine, and so will theirs. 

But being in the midst of that dialogue almost every day...cures and ableism and abuse and disability rights...I remember thinking how proud I was of her for caring about her sister and wanting to help her.  I remember too how at a parent teacher conference the 4th grade home room teacher told Leslie and I the story of how one day they overheard a group of kids talking about a student who had a lot of disciplinary problems, and how they said Emma spoke up and said, "Maybe he has autism.  My sister has autism.  Sometimes she doesn't understand things the way we do, and she gets frustrated and acts out." and how impressed they were that Emma had tried to look past his behavior in an attempt to see a reason.  His side.

Without talking at length about how patient my daughter is with her little sister's sometimes questionable affection, or how her own expectations for what having a little sister means may have diverged from "plan", or how she steps in happily and ably to help when neither Leslie or I have that extra set of eyes or ears or hands to keep Lily out of trouble/danger...Siblings of special needs kids are amazing, and we take great pains to make sure that our version understands how amazing she is and how much we appreciate her efforts and love, and I really hope you do the same with yours.

For a few examples I have written of in the past there is this:
And this:
And this: