Wednesday, April 27, 2011


Mr F agreed to do a video with me about our new plan. That should be good quality entertainment!

Kid had her bi-annual neurology check-up. He's really the greatest peds doctor of any kind we've ever seen. Such amazing bedside manner. Since Kid has gone about 9 months without any neuro symptom (no more cyclical vomiting... remember that from last year?!!)... she is now discharged.

It's kind of amazing. This has been a really long, stressful experience.

And it is the small things... like... I don't have to list this, or her neuro contact on her medical forms anymore.

Every single time I did, it brought it all back, and the worry that... shit... something still might happen. (It still might... just really unlikely now)

After everything she has gone through, she really is one of the lucky kids that seems to have outgrown it.

On the other side of things... he is referring her to the OCD/Anxiety specialist clinic at U of M.

I almost forgot to mention all of that stuff and those symptoms to him, but then it came to me. I'm glad I had that traveling thought at the right time... "oh you know brains... listen to this!"

All of this stuff is so interrelated and overlapping, he wasn't surprised in the least.

Not even that we took her out of school... or that she's thriving at home... that's all supportive evidence in a way.

But he did think it was enough of an issue that she needs to start working with an OCD specialist.

I also said... "and this behavior (nodding to her protective cocooned up body position which she maintained the entire visit)... " "Is not just for the doctor's visit?" He added. "Right." I said.

"They also have Anxiety specialists." He said and handed me a referral.

And, that, didn't even feel bad. These days, every time someone acknowledges and validates my experience with this stuff... I don't feel overwhelmed with "why did this have to happen?" type thoughts. Taking her out of school has really alleviated a lot of my worry. She's smart, capable, and funny as hell. She'll make her way. Maybe not following a traditional path, but she'll have a purposeful, happy, productive life. I mean... hasn't every genius had some sort of mental disorder? Exactly. Let's focus on that.

Now let me speak generally for a minute... because I can... and I think it's important...

A lot of time people, well meaning but grossly misinformed people, send the very strong message that "they'll figure it out on their own" or "let them do it" or "they need to learn to stand up for themselves"... messages that what ails Kid (or similar kids) is overprotective parents. That ALL kids are capable of being at a certain level at a certain age... and, it just isn't true. Some children (some adults) just can't (nor do they want, nor is it even beneficial) to have that level of independence and responsibility. It's just too stressful. Not everyone grows out of it, or into it. And if they do... it might not be at the age that is "acceptable" to others. So my message is... please... when you see a child (or an adult) that doesn't act the way you think is appropriate, or a parent you think is being overprotective or overly permissive... take a moment to remove your judgments. Not every child that is acting out (be it externally or internally.... if you've seen my child at a social function you may know what I'm talking about) is doing so because they are spoiled brats and their parents let them run all over them. They may be doing what is right for them at that time. They may be doing all that they can, just to be there. They might be working on it.

And if you are thinking... and I know some people are... it just can't be that there are this many more kids with *issues*. Well, you are factually wrong. There are. We may not know the reasons, but it is a fact. The other thing is that in generations past, children with issues weren't mainstreamed the way they are (thankfully) now. And that medical knowledge and treatment methods are different (thankfully) and parents are more informed. These children are more visible, and their behaviors are more tolerated... because the alternative isn't *growing out of it* or *shaping up* it's long term, detrimental, negative self-beliefs. And those children turn into angry and or depressed adults. And that is a very real outcome. Very real. We're not all created equal... some of us a smarter, some more insightful, some are more sensitive, some are more afraid. There is room for everyone. Lets not throw the baby out with the bathwater. Lots of *special needs* kids have extraordinary intellectual gifts. So what if they can't sit at the Thanksgiving dinner table? Or preform in a recital? What if they're going to win a Nobel Prize one day... if... they are allowed to thrive in a world that can make some allowance for difference. IF their parents are allowed a little more breathing room and support for caring for their child in the best way they can.

Because one day... it might be your kid, or grandkid, or nephew... and all those preconceived notions you had, will wash away. And you'll just want everyone to be a bit more patient, a bit more understanding, a bit more generous.

Later last night I said to Kid...

"Are you mad that I told him all those things?" (talking about her compulsions)

"Yes. I do them because I want to." Kid said.

"I know, but that's kind of the point." I said.

"Oh." Kid said and started laughing.


Nutmeg said...

Well put. And it is the kind of understanding, flexible, thoughtful parenting that gives kids like Kid a chance to show their light. I'm glad you got a little validation from the neuro.

TotallyFried said...

I am happy for you.

And I so agree with you on later part. This post made me water up for some reason...

oh I am lurker most of the time..not the bad one just a supportive lurker :)

Julie said...

This is so timely for me. When you have time, I have posted over on my blog.

There are indeed more children with special needs than generations past. Not just because we are more aware and more open. The neuropsychology community has said so much. One neuropsych (not my son's) and some therapists that I know believe that it is because our world has gotten so toxic. As one therapist said, "We are killing our children."

I am so happy for you with the neurologist. I would have more to say, but I am so so tired.

I CAN NOT WAIT for the video with Mr F.

Gigs said...

Thank you for saying that.

Gigs said...

Oh, and I can't wait for the video either!!

lucinda said...

I honor you for letting her be. It's the way she'll learn to trust enough to fly, if she wants to,when she wants to.

Deb said...

I can't wait for the video.

I read this week that 1 in 110 children have autism. If that fact alone doesn't support the idea that we should be cutting a lot more parents slack, I don't know what does.

As an adult who has excelled in life despite having ADD, I can tell you that without a parent's help, it's a particularly hard path. The girls are lucky to have you and Mr. F.

I'm so glad she's been cleared. I think about you guys and the emails you sent me every time I fill out school paperwork for my guy.

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