Thursday, January 24, 2008

So {happy, upset} I could cry

Choose either one. They both apply. I just got off the phone with the intake coordinator at a local developmental center. Captain Adventure is going next week to start the process of a full-full-full autism assessment, with all the various spectrums and syndromes and all the “hmm, well, maybe it might be…” possibilities chased down to a definite YES or NO.

I am so happy, and so upset, that I cannot stop misting up.

We’ve had the “lite” version of these evaluations done three times now. The first time it came back “Nah!”, the second time it came back “Wellllll…” and the last time it came back “Eh, maybe? But maybe not…could be this, or that…huhn…we should probably have him checked out by the Professionals.”

Something is not right with my boy. Oh sure, he’s getting better. He’s adding words every day. I asked for a hug this morning and got it, and a big old kiss besides. When he wants something, he’ll ask for it specifically; that’s huge progress from a year ago, when he would simply begin shrieking and crying for no apparent reason, and I had to play “twenty guesses” to figure him out. Offer him juice? No. Milk? No. Diaper? No. Pretzels? Aaaaah, so that’s what he wanted…

But still. He’s just kind of…quirky, sometimes. And I don’t mean “cute quirky” or “showing some individuality” quirky.

Weird quirky. He doesn’t generally do things that scream “AUTISM!!”, but he does do things that murmur it. Hint at it. Suggest that maybe-possibly…it could be…or maybe not…then again…ARGH.

I have been trying to get him into this center for evaluation since before Thanksgiving. I have been calling and calling and calling. Between people being gone for holidays and the sudden spike that comes at this point in the school year, I was starting to think we were never going to get a call back.

And then glory hallelujah. Someone called me back.

Bang! I get the referral letter!

Wham! Please send us copies of this, and that, and that other thing, the one with the squiggly lines!

And today, rrrrrring-rrrrrring, hello, can you come in next week? It should be for about two hours, please come alone with the child, no siblings or Concerned Others…

I managed to stay perky while I was on the phone. I took down information. I said “Great!” and “OK!” and “No no, next week is awesome – sooner the better!”

Early intervention, after all, is key…you don’t want to wait on these things…

And then I hung up the phone and dissolved.

Sometimes, I don’t want to know. Maybe if we just ignore it, he can be our baby forever. It’s OK. He can just be the way he is. Forty months old, and talks like a nine month old. Babble babble Mommy babble babble Dora babble babble car!! Can’t potty train, has to be carried because he won’t take my hand and walk obediently at my side, can’t be left alone, not for a second, because he will start destroying things in innocent but wild abandon, exactly like a twelve month old trapped in a three-and-a-half year old body…

Sometimes, the possibilities are just so overwhelming. But I suspect this is exactly like getting shots. I always get so worked up when I know I’m going to have to get a shot. It really is extraordinarily silly. I get into A State every single time. I’m worse than my children, I seriously am.

And then the actual shot is never, ever as bad as the State I got myself into over it.

He is a sweet, loving little boy. He is wicked smart. He is not “normal”, or anything like it. Somewhere in that little head, there are connections that just aren’t being made right.

He’s going to need extra help to straighten it out. And maybe, just maybe, they never will quite hook up the way most brains do.

That’s OK, too.

He’s just himself. And at being Captain Adventure, he is as perfect as perfect can get.

Now if you’ll excuse me, I’ve got to go find my Big Girl panties and put them on. I’ve got a lot of sucking up and walking off to get done.

And also photocopying of papers with squiggly lines that mean something about his hearing, and other papers with squiggly lines that mean something about his cognitive skills, and other papers with long rambling paragraphs about how he matches shapes and colors and blocks and whether or not he makes approximation sounds…


Anonymous said...

*big hugs* All through my pregnancy I was terrified of autism. Totally terrified. I really hope they are able to evaluate him, figure out what's going on and get him the help he needs ASAP.

patrice said...

I'm so glad you're going to be able to get him fully tested. Not being sure is definitely harder and more stressful than knowing, because once you know, you can make a plan. My sister-in-law is a professional working with kids with autism, and if she is any indication, the people in the field are wonderfully kind and competent. I'll wing a few prayers to the Being in charge that the outcome is just what you want.

Anonymous said...

Hugs and thoughts to you and Captain Adventure. We are all thinking of you and your little guy.

Yarnhog said...

I wish I knew you in person so I could give you a big, giant hug. You are such an awesome mom. (And yeah, I've read about your bad days, too.) But your commitment to getting your son what he needs, no matter how hard it is for you, is inspiring, and always makes me tear up. Here's hoping the tests reveal Captain Adventure in all his glorious uniqueness--and point you toward helping him be his very best.

Science PhD Mom said...

At the end of a crazy day, your Captain Adventure story is a ray of sunshine. You know your little guy is a wonderful person, and whatever help he needs to show off all of his personality to folks outside his family, well, good for you for getting that for him so others can see sooner what a great fellow he is! Hang in there!

Anonymous said...

Good for you for hanging in there and demanding testing and treatment for your boy. As a *retired occupational therapist* I know that there are lots of things that can help your child.

My favorite (worst) story about testing children involves my little brother. When he was 5 my Mom wanted to enroll him in a certain school. They required an IQ test. The idiot psychologist that tested him required him to do a lot of fine motor type activities. A 5 year old boy with some learning disabilities has rotten hand coordination. This so called psychologist told my mother that my brother was an idiot and should be institualized. Well, my mother had enough common sense to know she was wrong - my brother did have some learning disabilities and was hyperactive - but he now is a university professor with a PhD and a member of MENSA. As I typed this I realized, not a good story to tell someone with a child with some problems. This mess occured 40 years ago. However, today the world of child development and the testing and therapies have some a long long way. And as you say, he is smart little boy - he will come through this and be a wonderful happy productive communicating human being. Many hugs to you!!

Very Herodotus said...

Go ahead and dissolve for a little while. My son Jake's best little friend has Aspbergers (sp?). He's come a long long way from when he was three, and his mom described him as "wired a little differently somehow". She, like you, knew something was up.

So, take your time. Don't feel bad about feeling bad. You'll get it all sorted out soon enough. We are all here for you.

Marty52 said...

Oh dear Gussy, I'm so glad you finally got some action going for your little guy. Dissolving can be cathartic, allowing you to succumb to your fears and then get yourself together to face what comes next. You'll finally get some answers and be able to move forward. Do let us know how it goes... I'll be thinking of you!

Anonymous said...

Dear, dear Tama--you are in the very hardest stages of "finding out whether or not your kid has autism," but I tell you, as the mom of a kid that stopped talking at 18months and would have huge tantrums and didn't make eye contact and eventually got a diagnosis of "mild autism", it gets better. I'm not going to lie, it takes years, but my son is 10 now, and he's great company, funny, articulate (from no language to really articulate), he loves reading now, he's calm because he can communicate with the world and it can communicate with him, he has friends, he loves Doctor Who and lots of people who meet him casually would never guess he has a diagnosis, or they might think he has teh ADHD. Getting a diagnosis sucks a little (okay, a lot) because people keep saying horrible things about your kid, like "cognitive blah blah blah at the 12 month level" when he's three, and it sounds like the most hurtful criticism and just breaks your heart, but hang in there and major hugs from me, because the truth will set you free (although first it will make you miserable). You'll be able to get him the help he needs, and that helps so very much, and he will make remarkable progress, I have no doubt about that. My heart aches for you, because it's so darn hard--we had an IEP with my boy's school just last week, and he is very smart, the hard part is getting him to perform at his potential, but he has friends, he's happy, and truth be told, he's pretty normal. Your son is too--he may not be typical, or average, or ordinary, but he's normal. He needs a little extra help, and you're getting it for him. He's having superhero growing pains, as he learns to use his special powers, but so did Spidey and Superman and all those guys.

I will be pulling for you and Captain Adventure--he's a great kid. He's going to be okay--you're doing the right thing. Big hugs to your whole family.

Ewe-niss said...

Been there. Not with Autism, but with other diagnosises on my oldest daughter (now safely 19 :-) I remember the pushing others trying to get proper testing of all ranges. Doctors saying this or that was normal, but knowing in my heart that something was wrong. So the relief comes when we were finally getting the testing. Also comes the fear, because up till that time it wasn't proven and it was just a gut feeling. Terrified waiting for the results that proved I was right. Relief because we were at the right place with professionals who can offer hope and direction. Until that point, it was just us using our map getting trying to get to a location - yet we weren't sure of the destination.

So along with the many before you, I will tell you that all of this is good, and every emotion you have in regards to this is true.

*hugs* again. You are a GREAT Mom!

Anonymous said...

Big hugs to you and Captain Adventure - and all the rest of the Denizens. It's tough but you'll come out on the other side of this in great shape. Having kids who are "wired a little differently" is challenging and frustrating and tiring, sure - but also joyous and rewarding and FUN! Honest! Hang in there and I'll be saying prayers.

Shelly said...

I just came over from Persistent Illusion and wish I could convey my support for what you're going through.

I had twin boys evaluated at Early Intervention 5 years ago, it was a frightening time. Eventually we opted not to go with the EI recommendations, which is a story in itself. Best wishes to you and Captain Adventure.

Anonymous said...

Hi Tama,
I spoke with your hubby at the D fair and mentioned to him some articles that I've read on food allergies, especially gluten. If you haven't already (because you *are* a fantastic mom) think about getting Capt. Adventure blood allergy tested and also insist on an MRI to rule out any side issues. Regardless of any outcome, you have a beautiful family and a wonderful little guy. I am thinking about you and your family and sending you many hugs!

Anonymous said...

Hi Tama,
Ditto what Mo said.
I hope everything goes well this more thing you might want to request from your health insurance co. or doctor is a PET scan. I believe it shows neurological patterns and would be a great help in understand what *might or might not* be connecting or if there is another issue in the body causing issues.
Hugs to you all.

Anonymous said...

Oops..."in understanding"...*sigh*