7.09.2008

Being a Friend to Parents of Children With Special Needs

I get heartsick each time I hear parents of special needs children talk about how isolated they feel. If you have a friend or acquaintance with a special needs child, please believe that they could use your support no matter how competent and independent they may seem, how much help you think they already have, and despite how uncomfortable you may feel in asking.

Many parents of special needs kids experience social attrition after their child is diagnosed, and become even more isolated if their child cannot tolerate the family's former social schedule. Sometimes an email, or a phone call and a non-judgmental ear is all that is needed; sometimes parents really do need more than that. A few months ago, I wondered why I hadn't heard from a good friend for three days. When she finally surfaced, it turns out that she had had a 48-hour migraine and that her husband had been running herd alone for most of the weekend. I sobbed when she told me -- I would have been there, would have taken the kids, would have brought over dinner -- had I known.

But I understand why she didn't reach out. Sometimes, we know that our support community of special needs families is already so stretched that we don't feel we can ask for more than we already have. Some of our kids are really, really challenging and cannot be foisted off on a $5/hour teenager, no matter how much we need to go grocery shopping or spend thirty minutes sitting quietly in a poop-smell-free corner. We would hire more help if we could, but outside care for special needs kids can be expensive, and competent caregivers hard to find, even for those who can afford them. And some of us don't even want to be away from our children -- we just want more company when we're with them.

If you don't know what to do, how to approach, ask. We parents of special needs kids can be very thick-skinned, and I at least don't mind any questions rooted in good intentions. Ask your friends if they need any help. Ask how to interact with our children, how to make them blossom, how you can learn to love our children with this fierceness that would make a mama bear recoil.

Let your friends know that you are there for them, should they ever need your help. Don't wait until they reach out. They may be too embarrassed, too overwhelmed, or too depressed to ask themselves. Sometimes just knowing the support is there, should they need it, can make a huge difference in attitude.

P.S. I find it helpful to remember that quirky kids often have quirky parents.

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8 comments:

  1. I am having one those days. I don't know how I will make it through it, much less get my Little Man through it.

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  2. Jo, tell us more and see if that helps. Or write me.

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  3. Okay, how many times AM I going to have to bring the orange slices to the Big Softy bench this week? Hah?

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  4. Anonymous11:42 PM

    This is what really happens in life. It has in mine. People are uncomfortable with autism and still are.
    I went from having many friends, to having 3 now. Heck, the husband could not handle it either so he left too. Oh, and an ex-mother-in-law that has called her grandsons damaged and no relationship with them.

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  5. We've had a hard day as well... Took Jaymes to the playground thing at the mall here in town, and it was just humiliating. He took a pacifier from someone and sucked on it, and they threw a fit, ewww this and eww that and whats wrong with him and blahblahblah.

    Sometimes I hate other parents. Jaymes didn't mean any harm.

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  6. Anonymous4:09 PM

    Squid, thank you for always laying it right out there. Special needs families have a CISWY problem all their own...seems like I used to make and keep friends so easily, and now, yeah, not so much. Even within the special needs community, there's that uncomfortable hierarchy of "well, I have it harder than you..." and the fear of sharing your heartache in case it will trigger envy or resentment in someone else that you care about...

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  7. I found your blog doing an internet search on special needs kids. I'm so glad I found you!

    I have three kids, two of which are special needs. They are both bipolar, one being autistic (Aspergers), and the other being ADHD & ODD on top of it all. Quite exciting at my house, to say the least.

    I'm putting you on my blog roll. Great article on helping parents of special needs kids. I tried to tell my mom once what it was like. Her response "YOU were just like that as a kid." Gee, how helpful. (sarcasm sarcasm sarcasm).

    All kids are challenging & trying in and of itself in just being kids. Special needs are more mental gymnastics than i ever imagined. And yes, good luck finding a sitter. My kids are all boys. And the grandparents don't even want to babysit. Breaks my heart.

    Be that as it may, I'd never trade my kids for anything ;o)

    Best wishes, Esther

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  8. I read this blog and decided to sign up for my own. You are so right and hit it right on the head. I just wanted to thank you for an awesome blog it made me realize I am not alone and that others are going through the same things

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Respectful disagreement encouraged.