I recently read a blog entry by stark. raving. mad. mommy about How to Be Friends With a Special Needs Parent and it really struck a chord with me.I think that everything in her response…all of her ideas…were things I wish I had more of in my life. And some things I’m too afraid to ask from other people.
For instance, offering to babysit my children so we can go out? I’m terrified to allow anyone who might consider being friends with me to watch Squeaker. Chances are, the first time, he’d be an angel. After that, I’d be pushing my luck. His mood swings are unpredictable. Like, we had a solid week where he bit himself maybe twice the entire week. Then, all the sudden, the past couple days he’s back to frequent self-biting. This morning, he bit me, hit me, and kicked me as I carried him screaming into daycare so I could go to work. It was not pretty. His entire morning was shot and he had to go sit with the director at the daycare because they couldn’t handle him in the classroom. Is this what I would want a friend to deal with? Would we be friends anymore after that?? I hope so…
Suggesting our families do something together? Um. Gosh. You’d be awesome to offer that. I’ve actually had the offer from one friend and we’ve done dinner twice. Thank God both nights, Squeaker was pretty tame. And thankfully anyone I would take up on that offer knows he has some special issues and they don’t judge me when I cannot control my child. It’s a point of contention for me because I hate not being able to get him to do what I ask when I’m in front of other people, but they understand. And a glass of wine always helps relax the mood. For me, not for Squeaker.
Flexibility. Oh yes. I’ve left some events early because of an impending meltdown. I always feel guilty for it. Once, I had volunteered to help with clean-up after a big event. I don’t know what the heck I was thinking, because I should’ve realized that after more than an hour at an event with a bunch of people Squeaker doesn’t know, we would need to leave. But yes, I appreciate it when people cut me slack when I need to leave. Especially when I don’t say goodbye first. I’m pretty good at that…
Listening? Yes, please. Venting to a sympathetic ear really helps.
Advice? Um. Please don’t tell me about the gluten free diet. Or any diet, really. For us, half the battle is just getting him to eat. But I definitely do welcome advice that comes in the form of “well, we did this and it worked for us. Do you think it might work for you?” I’ve heard of some really awesome things that other people have tried. Sometimes they work for us, and sometimes they don’t. Gentle advice is always appreciated though.
I definitely love the pick-me-up that someone telling me I’m doing a great job with my son gives me. I think we, as special needs parents, can sometimes (a lot of times) feel like we’re just not doing good enough. Hearing what we’re doing right is super helpful. I know I’ve had it said to me on occasion and I truly appreciated it.
And finally, the biggest one for me, is that I like to feel like a good friend myself. I like hearing my friends’ problems. Not just because it makes me feel better, either. If you need something, I’ll always do what I can to help. Friendship should go both ways. My having a special needs child does not mean I trump your bad day. Let me cheer you up on a bad day. Or do things for you. I enjoy helping.
One thing I would add to this list is that you should teach your child empathy. And your child may have questions about why my child behaves the way he does. That’s okay. Help your child learn why. Different kids with different specials needs will have different kinds of behaviors and characteristics. I think all children should be aware that we are all special and we all deal with stress, etc., in our own ways. It would be very discouraging for me, as a parent, to see a friend allow their child to be mean or even scared of my child because he can behave a little strangely at times. So, yes, please teach your child the value of our differences.
And, you know, sometimes I could just use a hug…
And to the people in my life who do these things (or at least part of these things) I want to say, “Thank you for being a friend.”