Having a Child with Down Syndrome, Part LXXXI: More Sibling Relationships

Copyright © 2015 Stephen Hawley, all rights reserved.

Stuart and Alice have a simultaneously typical and atypical sibling relationship. They go through phases where they love each other to pieces (requited or not) and phases where they bug the bejezus out of each other (again, requited or not). This is completely expected and completely typical. Yes, we have to intervene and sorry Stuart, sometimes we have to favor your sister, but we try to be fair and when possible we try to be an advocate for her rather than taking her side. A lot of that is translating her words into her intent and ensuring that it is heard. Other times we have to be heavy handed and send one or both of you to the locker room because you took it too far.

IMG_20150716_130345This morning, the kids were getting along pretty well and we were sitting on the stoop waiting for the bus to take Alice to summer school. Stuart insisted on being outside and he was particularly enjoying the time with us. Then there was this from Stuart:

It’s different to be Alice’s brother because she’s weird. You know, because she has Down syndrome.

Now in this case I understand that he’s expressing his frustration. He’s done this before – there were times when he just wanted to run around the back yard and play tag, something that Alice could never really do to his satisfaction. Playing tag with Alice is a one-sided game. This pattern has and will continue to repeat, adding to his frustration. I was going to jump in and smooth this over a bit, but Alice beat me to it.

Not weird, Stuart. It’s perfect.

And with these five simple words, I knew that Alice had just taken a big step into the world of self-advocacy. She heard what he said, digested it and responded in a very factual, calm way. There was no anger, no spite, no apparent hurt, just a clear statement of who she thought she was.

Stuart took the response in stride – no bickering (yay!), and went on to talk to her and me about daddy long legs (aka, harvestmen), which are arachnids, but not spiders. They fall into their own category, Opiliones. The picture above was taken while Stuart was very patiently trying to help Alice pronounce ‘Opiliones’.

I’m proud of both my kids.


1 thought on “Having a Child with Down Syndrome, Part LXXXI: More Sibling Relationships

  1. Helen M. Pluciennik

    Hi Stephen,

    You might remember our family from New Providence, NJ.
    Somehow we have entered your blog and your lives of living with
    a child with special needs.

    We now live in Cape Cod MA. and have for the last 15 years since leaving NP, NJ and what stories we could tell——

    We so admire how you, your wife, son and Alice are handling the joys, wonders and upsets of dealing with life.

    I am a Speech Therapist by training, a Mother by Miracle and a Grand Parent by
    such odd and wonderful events——the stories—–it is all about life. The mystery and the miracles.

    Your Blog is a guide to all parents and especially to those who parent special needs

    Actually, all children have special needs——too bad we as parents and grandparents didn’t get the manual.


    Helen M. Pluciennik


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