Just me a MOM..

Preemie life and Depression through my eyes.

Rules of Thumb

Posted by Jenn on July 30, 2007

I have recently been thinking of a way to explain to people what they can do for us as a family with a disabled Zach in it, Or how to react to us. I have not been able to find the time to actually sit down and type it out.  A very good friend of mine recently blogged some “Rules of Thumb” on how what to do for those who are disabled and their families. As I was reading her rules I found that what I was reading was exactly everything that I would have written and more. I have asked her if I could blog about them as well, gratefully she said yes!

You can find the blog in its entirety here.
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There are a few rules of thumb, I think that are safe to say for those who might be close to someone with a child who has a disabilities.

1) Look us in the eye. We are not invisible and we don’t like to feel like people are avoiding us. And trust me, it happens. It happens in the grocery store, at church, at a tupperware party, the pharmacy check out line, you name it… avoidance is hurtful and heart breaking and it makes an already rough situation even more devastating.

2) If you have a question about our child. Ask it. “Now, that tube, what is it for?” is much better, than standing in line at McDonald’s, and having some stranger stare at the tube coming out from the child’s belly.

3) If you are in a position, where you have a special needs kiddo, in your primary class or you are a Primary president, or PTA president or Scout Leader, Swim Coach…. what ever your title might be. Ask us. “Hi, I’m Sister So and So, I’ve been thinking about Zach coming into Sunbeams. Is there anything, we can do to accommodate him? How can we make primary a success for Zach” or- “I understand that Liza has a visual disability, is there anything we can do during circle time, to help her feel more comfortable and content during that activity?” We would MUCH rather be asked, than have to come forward ourselves and say, “Sally can’t see very well, so could you arrange to have her class sit in the front of Sharing Time?”

4) Having a child with a disability, is a humbling experience. It is very difficult, VERY difficult to have to ask for help constantly, and yet we need help. Finances are almost ALWAYS tight, when you have a special needs child. We fight and argue with the powers that be over insurance, and keeping insurance for our children. We attend many doctors appointments, hospitalizations, therapy appointments, and a myriad of different things of course depending on each individual child. If you know a family and you can be of service, offer it. Help with other kids, a drop by dinner, just anything. Those things can be enormous.

5) See our children. Don’t avoid looking at them, yet don’t stare. Look at them, get down to their level, say “Hi Christine, how are you today?!”, even though some of these kiddo’s can’t say hello back. If they are older, don’t use “baby talk”, simply acknowledge they are there. If and when they do respond, in a lot of instances it takes time for a response. Wait, acknowledge. The simplest hello, can make a parent melt.

6) See us. Don’t avoid eye contact, don’t avoid saying hello, just treat us like everyone else. I’ve heard many many many parents of special needs kids say, “I get so sick of hearing, “You must be so special to have a kiddo like that” Um, ya we don’t want to be special, we don’t feel special, we feel normal. We are screaming inside, We don’t want to be special, we just want to be NORMAL…

7) Invite our kids to things. Ethan not once, has been invited to a birthday party. I mean, he is almost four, and maybe those things haven’t started yet, but I am pretty sure … this is something I’ll have to get used too. He may not be able to tolerate going, but it would be nice to be included. Parent’s aren’t just going to drop off their wheelchair bound, tube fed, shunted kids for three hours either. They’ll just bring them for a bit, and stay.

8) Don’t avoid asking us to do things. Participate, have callings, be in the PTA, help with red ribbon week. We are busier, and sometimes it is just too much, but having the opportunity is often enough to help us know at the end of the day, we are “parents”.

9) Be aware of our typically developing children too. They often feel frustration and sadness. They feel left out, and weird and not normal. They feel the covert looks and if that family is treated differently. If you are capable and willing, offer to drive to soccer practice or dance. Rather than car pooling. You know, little things like that.

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One Response to “Rules of Thumb”

  1. amyf4 said

    I agree with the rules but I really think until you have first hand knowledge you don’t understand or even empathize. You can sympathize but I think it is hard to know what to do. You don’t want to cross any lines. I was able to be somewht exposed by my mom’s friend who had a daughter with CP. We were able to see before and after so it was easier. But until having Kade I had no real idea. But things like this are a good start on educating, too bad ya can’t print it up on a card and hand out.

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