May 1, 2014

The Uncomfortable Truth

I'm in a Yahoo! group for parents of special needs kids. It is a great group, made up only of parents—no professionals, teachers or anyone involved in providing services for special needs kids. The needs vary in type and severity, but the feedback on local providers, school districts and classrooms is invaluable.

But as with any group that is both varied and on the internet, the occasional heated debate arises. The most recent one erupted over a local event about raising siblings of special needs kids. The event is called "I'm Important Too" and the description includes this line: "Living with a child with special needs is tough on families, especially for typically developing siblings who may sometimes feel forgotten or less loved."

Well, this caused quite a bit of outrage. Sure, the group is intended for parents, but how would it feel if you were a child (or adult) with special needs and read that you were "tough to live with?" Not great, I'd guess.

I will speak only for my family now. The truth is that Moe is very tough to live with. He requires constant supervision, is self- injurious and aggressive toward others, including the dog and on occasion his little sister. I cannot count the number of times I've had to tell Jelly "in a minute, Moe needs me right now" or the things we cannot do because Moe's needs make it impossible. These include travel, playdates, eating out or going to the movies as a family, to name just a few. It is not his fault, but it is reality.

Jeff and I are stressed, stretched thin, on constant alert. We do a lot for Moe because we love him, but also because we have to. Make no mistake, we are not heroes in any way. We have no choice.

And it is hard.

I need, and have found, several safe places (including this blog) where I can say that. And as Jelly gets older, she is going to need several safe places to say that too. She is going to need to shout from the god-damn rooftops that living with Moe can be really really fucking hard. I'll even allow the swearing. Because it is, and no good will come from sugar coating that. She needs to know that she is heard too.

She also needs to know that we love Moe despite the fact that it is hard. We love him for who he is. His life has value and brings us great joy. But living with him can be difficult, and she is not a bad person for feeling that way, if she does indeed feel that way. Perhaps she won't.

News broke of another case of a mother who killed herself and her adult autistic child. These cases are heartbreaking. They also bring out the rage of a heartsick disability community, who blame the portrayal of autistic people as "hard to live with," as leading to a mindset that accepts these murders as okay. They believe that the parents and the media make these murders excusable by painting the act as somehow understandable or the autistic person's fault. It is neither, of course.

But I do not believe the answer is to hide the fact that autism can create a terrifying existence for some. I do believe that the media, lawmakers, families, insurance companies, policymakers and autistic self-advocates need to know that keeping these kids safe means keeping their families safe too. It means shouting loud and clear that for some living with an autistic family member can be hard, even near impossible. So impossible that some parents see no other option but death.

Because there is no safety net. Not for these kids and not for their parents.

Moe is almost seven years old, and he's a small kid. But he's strong and someday he'll be too strong for me to handle. We are working hard to help Moe get the communication skills to tell me why he's mad or frustrated. But if I'm no longer able to keep him safe, or his sister safe, or myself safe, what do we do?

Someday, for one reason or another, Moe will not be able to live with me and Jeff anymore. So tell me. Where will he go?

This is not a rhetorical question, one that I hope to have many years to figure out but one that nevertheless weighs on my mind and doesn't seem to have any good answers. But maybe, if I shout my pain as loud as I can, if I tell everyone that living with an autistic child can be really, really tough, someone might help build those safe places. So we all can be loved and cared for. Moe especially, but the rest of us too. We all have value.

So I say it again. I love Moe with everything I am. But living with him is really hard.

It may be uncomfortable to hear. But it has to be said.

Read also a related post I wrote last September: Making Positive Changes in the Wake of the Stapleton Tragedy

10 comments:

  1. You have written a simply amazing compassionate and realistic piece..this is something everyone needs to understand

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  2. Hi Jenni,
    Imagine this for a second. That Moe was a super, super child athlete. That he had adoring fans wherever he went and always had a lot of attention. A sibling in such a family would say it was hard to grow up with that and could easily grow up always with a complex, always trying to prove themselves. It is okay to talk about it, so why shouldn't it be okay to talk about how difficult it is to grow up with a special needs sibling???
    If there us a sibshop in your area, try taking your daughter there. It's a group for your daughter to meet other siblings with special needs. I believe it starts at age 7 or 8. We tried it for the first time and it was wonderful.
    Growing up is hard when you are different from your friends. You are doing the right thing, but finding other families in the same situation, so you can 'normalize' the experience for your daughter.
    Linh

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    Replies
    1. That's an interesting analogy. The one that was given in the group was to substitute any other marginalized group. After all, we don't often hear about parent killing their athletic kids. How would you feel if the workshop said "living with girls can be tough" or "living with gays" or "living with blacks?"

      I don't think that analogy works either. It isn't an apples to apples comparison. My daughter doesn't have to check before she comes out of her room to make sure her brother isn't nearby because he is gay. It is because she is scared of him. And she needs to be able to say that.

      I should note that in the end, the group did change the wording to be something like "a workshop on raising both typical and special needs children." It was a fine outcome for this group. That said, I hope the workshop itself will be a safe space for parents to learn, share, and find help if they need it.

      Delete
  3. Bravely and beautifully said, Jen.

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  4. Jennifer, I think you said this really well. Mine are a bit older than yours and that whole "where do we go from here?" is looming. It is scary. It is sad. It is also very real. Anyone that thinks these kids are the same amount of difficult as typical kids is deluding themselves. It doesn't mean we don't love them. It doesn't mean we don't want the best for them. It DOES mean they are harder than their typical peers. Hugs.

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  5. Yes, it is hard.... for each member of the family. It doesn't seem that long ago that my son was 7 years of age, he is now nearly 15. He has got easier over the years and my only concern is what on earth will happen to him when I die. I don't want to lay the responsibility on his only sibling but what choice do I have?

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  6. Yes, it is hard.... for each member of the family. It doesn't seem that long ago that my son was 7 years of age, he is now nearly 15. He has got easier over the years and my only concern is what on earth will happen to him when I die. I don't want to lay the responsibility on his only sibling but what choice do I have?

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  7. Thank you for saying how I feel today. It can be so hard on my family ,especially my other kids. We need more help and places for our disabled loved ones to live safely and have our families live safe too.

    ReplyDelete
  8. Thank you for saying how I feel today. It can be so hard on my family ,especially my other kids. We need more help and places for our disabled loved ones to live safely and have our families live safe too.

    ReplyDelete

I love comments! Respectful disagreement always encouraged.

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