Monday, September 22, 2008

I Finally Did It

Today I picked up the phone and made that call I'd been putting off for months. Because making that call meant I could not bury my head in the sand any longer.
Who did I call? Well, since we are moving to Louisville, I called the Weisskopf Child Evaluation Center at the University of Louisville. What do they evaluate? Autism issues.

But, you say, you already have your dd's diagnosis. Why would you need to call them? Well, dear readers, I'm not talking about my daughter, I'm talking about my son. As the years and months have gone by, I've noticed that there's more than one "squeaky wheel" in the family. But since one wheel was squeaking the loudest, for a long time, that's the only wheel we heard.

But through a series of events, observations, conversations with other parents of spectrum kids, and reading, it's time for my to uncork my head from the sandpile and face facts:

-Big huge hairy social skills issues.
-Cluelessness about what might or might not offend.
-Sensory issues (especially having to do with food) galore.
-Sensory issues related to sound (avoid concerts with this child, if you want to have a nice day.)
-Odd, awkward gait, body language
-Gross motor skill clumsiness
-Fine motor skill clumsiness
-Eye contact issues
-Perseveration on one topic with encyclopedic knowledge of minutae thereabout (Pokemon, oh joy! but before that it was Spider man...)
-Late language development
-Odd vocal pitch
-Inability to connect with peers
-Talking at people, not with them
-Odd, stimmy type hand movements
-A diet that definitely needs modifying, as he only eats Gluten and Casein containing foods, and that is probably the worst thing for him. Yes, I've tried. none of the "I'm such a good mommy because I can force/manipulate/parent my kids into eating veggies" tricks has worked for me. Which, my friends, should have been a big clue a long time ago. Because I've been down this road before, with my oldest.

When your parenting apparently is so ineffective that you cant. make. a. difference. (Like with my dd's tantrums when she was younger and with my son's food issues.) And you try and try and try and outsiders who might not see the whole situation might think your kid is somehow spoiled or ruined (all Mom's fault, of course), perhaps, just perhaps you have an autistic kid instead of a spoiled kid. (I'm just sayin'....)

So I made the phone call. Followed by another phone call. It's complicated. You call there, then you call your pediatrician who calls them and fills out some paperwork to fax over there, then they set you up with an appointment and call you and let you know when you can get in. It may be another six months.

But that's OK. At least I've started. And that feels good, even though facing this reality also makes me want to cry and rage and scream and feel sorry for myself. But I won't. I'll take a deep breath and be strong instead, and say a prayer that there won't be psych issues when adolescence hits. God have mercy. I'm so grateful that he's a gentle boy.



elizabeth said...

Lord have mercy. That was a huge step. Today old calendar is St. Joachim and Anna; I will ask of them for help for you on this their day.

Liz in Seattle said...

Lord have mercy, indeed. Good for you...way to be the proactive mom (even when it's so hard and nobody else truly gets it). Please take time to grieve (away from DS, of course)...finding a listening ear can be a good thing.

Many prayers for you.

Joyful Days said...

No wisdom, no words, but will offer prayers.

Veiled Glory said...

Know a little how you feel, pre- and post-phone calls. You did the right thing. :)

H and S said...

Speaking from absolutely no experience, and not even knowing your family at all, I must comment that it seems crazy to say that your parenting just can't make a difference. Maybe things would be a whole lot worse if not for your hard work. I don't know. Lord have mercy, and my prayers are with you.

::Sylvia:: said...

You and your family will be in our prayers. I know (not first-hand) what a difficult journey this is. My aunt has 2 autistic boys. If you ever need someone to talk to who goes through this she offers her ear to many women, she's a presbytera in ohio and I'd be glad to pass her number along to you.


Theodora said...

Hi Alana, I had a dream about your family the night before last -- you were living on a farm (go figure, it's a dream) and you had turned one of the outbuildings into a beautiful little chapel, complete with a handpainted iconostasis (but it was misplaced behind the altar, like the icon of Christ Pantocrator; oh well, again, dreamworld).

So, I'm definitely thinking of you all, both consciously and subconsciously!!! I hope E gets what he needs, sooner than you anticipate, and I'm glad that he seems to be a *happy* little guy as well as gentle...but why wouldn't he be when you love him so much! Love, Th

Alana said...

I always secretly dreamed of turning our detached garage into a chapel and trying to "start something" here in our neighborhood, but I could never seem to get the right permissions for that task. ;-)