Thursday, May 8, 2014

Pants? Really?

Boy: (Walking out of the bathroom with pants around his ankles)
Me: What about your pants?
Boy: Oh. (looks down) I didn't know about them. Is pants necessary?

Me: Yes. Especially when you aren't wearing underwear.
Boy: You don't want to see my penis?
Me: No.
Boy: Oh. Alright. (pulls up pants) It is my friend the penis but it will go away today. (sighs)

Wednesday, May 7, 2014

The Chi

My Chi has officially passed away.

4.5 years with the same one. I never cheated. I occasionally dabbled with hot rollers, but I never, ever, ever cheated. Chi was always there for me; hot at a moment's notice, always faithful.

Dear Chi,
You were G-d's gift to this white girl with a serious fro. May you live an eternal afterlife in a product-free land of curl and frizz.

I will miss you.



UPDATED: 6 weeks later.....

Boy: Why is your hair so crazy like a snake statue?
Me: Medusa?
Boy: WHYYYYY?
Me: Because my Chi died. And Mommy has crazy hair without a Chi.
Boy: Can I make you a Chi?
Me: No. They sell them at stores.
Boy: I have money. Can I buy you nice hair?

Saturday, May 3, 2014

Early Intervention

     My boy is sitting in my bed, watching Transformer videos. Or rather, he is watching videos made by grown men and posted to YouTube about the +s and -s of certain Transformer figurines. I am trying not to be bothered that these reach him in a way that I can't; supporting the interest.
But as I watch him the thing I wonder about most, and am perhaps the most upset with at the moment, is the reality that the term 'early intervention' is very, very empty. That it's a catch phrase. That people use it to make it seem as if problems are being addressed, questions answered, services rendered.
     They aren't. At least, in our world they weren't. The Dr. who helped us with Boy's evaluation made certain to put his IEP assessment percentile rankings on her report. She did that to draw attention to them. Attention even I hadn't paid. I focused on the fact that he was ''at least'' receiving services. 15 minutes a week was better than nothing, right? Well, that depends. It depends on these nice little numbers, numbers Mommy's who don't know what they are looking at don't understand, mean.
These numbers were from last spring. One year ago. Before he qualified for the DD pre-pre-K class they enrolled him in and promptly tried to graduate him from without services.

1%

     That's 1 percent. That puts Boy in 1 percentile ranking. Which apparently means 1% of children his age score LOWER than he does and 99% score higher. That is not good. The PhD and OT and SLP at his school gave him that ranking in more than one domain on his Batelle Inventory. His total was 7%. I'll let you do the math.

And then I'll ask you a question;

Does 7% sound like ''does not require services'' to you?

Well, golly.

     So you see the frustration. A year later, after countless concerns and fits and interventions and assessments here we sit with a diagnosis that explains EVERYTHING and then I have to back track and wonder what happened. I mean; what the hell happened? Where did these specialists who do nothing but provide early intervention, get the idea that 7% ranking is ready to go into a typical classroom without modifications?
     I don't have the exact answer. I have suspicions. One of those haunting suspicions, lurking in the shadows, whispers that this is the reason IEP advocates and lawyers exist.

And it sucks.

Friday, May 2, 2014

Welcome To The Spectrum

    We didn't actually just arrive here. We've been here the whole time, but our immediate family was the only group who knew it. Oh, there've been the few, wonderful/amazing/supportive therapists along the way who knew that we were here, and who bravely helped us find our way. The rest ... not so much.

     He's four and a half. Well, almost five. And when he was two weeks old I was already staring at him wondering what was wrong. At two weeks old I was told it was the crazy-mommy-baby- hormones talking. At two months, still baby hormones. At one year, paranoia. At two years, low thyroid. At three years, still paranoia and Xanax might help. At three and a half, someone finally watched the videos and listened to me. At four he finally started receiving services. A lot of services. At four and a half I finally got a diagnosis that made sense.
     It's three nights after my one-on-one with the PhD. The one who came as close to understanding him as someone possibly could after two days in a locked room with my boy and his Legos, watching him stim, watching him run around the room in circles, try to escape the exam room through a window, giggle at the Play D'oh ... and listening to him scream when they pulled me out of the room to fill out forms. There aren't any more tests to run at this point. Every inventory, assessment, diagnostic schedule, observation pattern... they've all been run and I have a 4-inch binder where I keep them like some sort of golden trophy, hole punched and sorted and waiting for someone to try to tell me, once again, that it's all in MY head.
     Even now, after all this time, I don't understand. Why would anyone, let alone a medical professional, tell a parent they were paranoid, overly worried or depressed instead of just sending the kid out for an eval? I look back and I can still see him, running around the exam room of our (former) pediatrician's office, touching everything, climbing on everything, not making eye contact, not responding to questions. Just running in circles giggling. She looked me in the eye and said, "He's perfectly fine. You're worrying too much."

The 4-inch Dx stack says differently, my dear indifferent Dr.

299.00 Autism Spectrum Disorder; Requiring very substantial support.
312.9 Unspecified Disruptive, Impulse-control and Conduct Disorder (R/O)
314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly hyperactive/impulsive presentation (R/O)

...Dyspraxia... Dysgraphia... Sensory Processing Disorder/Neurological Sensory Differences... Poor Muscle Tone... Abnormal Gait.. Receptive Language Disorder.. Expressive Language Disorder... Phonological Disorder... Articulation Disorder... Fine Motor Difficulties.... Normal Vision... Normal Hearing... Impaired Verbal IQ... Average Non-Verbal IQ...

     I've been told

     He also giggles and hugs and smiles and runs in circles and finds joy in everything from pattern walking to popping Legos on and off over and over and over and over.... So I don't care what the diagnosis is. I only care about the help he's going to get, the services and finally... after four and half long years... fewer people looking at me like I am out of my mind. Maybe. Maybe they will see him in his monkey halter, wearing footie pjs and giggling or, if we are at the grocery store, tantruming and screaming like he needs an exorcist, and think I need serious Mommy-intervention.
     But the ones that matter, the OT's and PT's and SLP's and Behavioral Therapists... they will look at the papers in their hands, usher us in the door. and we will start fighting as a group what I've been fighting on my own for a very long time.

   I hope.