Friday, July 06, 2007

And how are you, Mr. Tourettes?

We have had some rough TS and OCD days this summer. We've also had some super days! That's comes with the territory.

This week we saw the dr. to discuss a bit of a change-up in medication. I always HATE messing with meds. You hit a point sometimes where you need to make adjustments, but it's always a little scary. If something doesn't work, you have to back up and try another approach ... all the while enjoying the lovely side effects until Plan B kicks in.

It's not miserable. Well, okay .. there are certainly miserable MOMENTS! It takes a vast amount of patience at times.

Yet, it's my kid.

I was talking to a mom several months ago about Mackenzie's tics (Mack tends to suppress them a lot in public, so others rarely hear or see her "stuff," or just assume her eyes are dry or itchy, etc.). Anyway, she was asking about it, and I was explaining her vocal tics and how they can really go crazy in the evenings ... when we're all sitting around and it's fairly quiet ... and all you can hear is the grunt or the hum over and over and over and over and over again.

"I just couldn't handle that!"

Such a weird thing to say. Of course, you could. It's your child. If her head blew up and spewed brains all over the carpet every night, you would be able to handle it. It's your kid. It's not always a party, but as a parent you reach way down into your gut to help your family through their "stuff" and the hard days.

Anyway, I just thought I'd let you guys know that such a comment is probably a really bad idea when talking about special needs kids. It can imply so many things, and some of them turn my stomach.

Try something like, "How do you work through the difficult moments?" or "Where can I go to read more about her situation?" or "Is there anything I can ever do to help you guys?" or "If I haven't told you lately, your kids are amazing."

I'm a little more partial to the latter. :)

7 comments:

cammie said...

I agree that people tend to make stupid comments! It happens with the subject of adopted children, too...as you well know!

I think the world would be a better place if we all stopped about 5 seconds to think before we opened our mouths!

beth said...

Well said; thanks for the insight.

Your statement 'i am who my God says i am' has meant a lot to me during the past few days....thanks for putting it there. i've clung to it...

my blog is now private; email allthings4good at gmail dot com if you care to come visit...i linked to you in today's post because of that statement i referenced above..

thanks for your continued depiction of a loving, merciful God. it matters...

Christy (HPU grad.) said...

As a mom of a special needs kiddo myself, I agree with you. On this journey with my son's autism, I have met all kinds of people with all kinds of comments. I find most just center around not knowing and not thinking. I know for myself, it has made me not judgemental of other kids or parents for that matter. If a kid is freaking out in Walmart, who knows what that kid is dealing with. Just have compassion, and go on. It's only by the grace of God go I....

Jamie said...

Hey...I'm late in saying thanks for visiting my blog and leaving a comment (ref: homeschool planning)...but...thanks!

As for your post here about people's comments...I often think that when things are so out of the norm for an individual, they think of dealing with a situation (or "stuff") as if it would all of a sudden been dumped on their/our laps. The truth is, sometimes it is difficult, sometimes we think things to ourselves even...but you are 100% right...it is something that you deal...and often love for our children (or family members dealing with us...I have "stuff") makes it not anything in particular to think of, because it is (or will become) common to us/them.

While I'm sure that individuals don't intend on insulting us...yea, sometimes it does. Heck, even with all my stuff, I've slipped into looking at individuals and thinking that I wouldn't be able to walk in their shoes with half the grace and confidence. I just had a very well intentioned person leave me a kind non-inquiry via email about my "stuff" and while I know her heart, I will admit that my initial reaction was raised eyebrow "wow."

Daisy said...

I hear you, loud and clear. My teen is blind and has Aspergers, along with a minor tic disorder. He supresses his self-stims and tics at school (with the help of a little medication), so we don't pressure him when he's "letting it all hang out" at home. I'm thinking of asking his doctor to change meds because of the usual teen growth spurt; it is scary.

Mama26blessings said...

Thankyou for pointing that out Christine!! Alex's tics are usually pretty well supressed in public too, unless he get's very excited!! God bless, Penny

Sam said...

I could make a list things not to say to parents of special needs kids. I've heard far too many of them. Thanks for sharing this.