Never forget the siblings

29 Mar

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.


3 Responses to “Never forget the siblings”

  1. Michelle March 29, 2010 at 4:35 PM #

    Very well written and a small tear for James. I know the boy I met Saturday night is full of imagination and joy and fiery , the fire in him tells me that James will be just fine. If he really wants to play with the potato head he will find a way to do it. You are doing a wonderful job of parenting as evident in both kids!!

    love you hun


  2. 5kidswdisabilities March 29, 2010 at 4:55 PM #

    You make a wonderful point!
    LIndsey Petersen

  3. Riana March 30, 2010 at 4:13 PM #

    Hey Kirsten, I’ve just read your blog – all of it. I am so proud of you and feel so inspired by you, for what you do for your kids, the way you are mom to your boys and a mate for Gerard.
    Enjoy your runs. I’ll be back to see how you’re doing and cheering you on.
    Lots of love,

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