Thursday, December 6, 2012

Goofy's OT Appointment

Not having a computer is killing me today more than the past three. The first day was the urgent need to facebook, by day 2 I was seriously needing my e-mail, and today it's google and a desperate need to bitch to parents who get it.

The past few weeks Goofy has been something else. To call the boy hell on wheels would be an understatement. It all came to a head yesterday (I hope. Dear God, please tell me it can't get worse?) when he was sent to the Assistant Principal's office. The conversation about that didn't go well at all. for example...

Me: So, I hear you went to see Dr. Mystery Man today.
Goofy: Mom. *sigh* it would be a long story.
Me: That's ok, baby. I got nothin' but time for you.
Goofy: It's just... it would take all day until the night.
Me: Told you, nothing but time. I'm all yours for as long as you need.
Goofy: Mom. Did you know somebody displode your lighter? Do you have another one? or will you just use the stove?

As you can see, I need e-mail. I need e-mail from adults who don't try to distract me with exploding lighters even though I would love to know who exploded my lighter. When my husband got home, he let me into his office and unlocked his computer so I could check e-mail and I have no e-mail from Dr. Mystery Man, I have e-mail from Alex's OT. Alex is doing so much better with transitioning in the hallways. The Assistant Principal is still looking into a harness and they would like to know if I'm still interested or if they should just let it go for now. From the same OT who ... what was it? 2 maybe 3 weeks ago?... was strongly suggesting a gait belt because he was a danger to himself and staff? I can't come up with an e-mail that isn't mean or sarcastic at the moment so I just don't answer yet.

Then today, when I took Thing2 to get his stitches out I asked the pediatrician if he had a chance to look over Goofy's school evaluation reports yet because we're going to see the OT at 2pm. He says he's read through it a few times, he isn't finished but the thing he keeps seeing come up is sensory. Ok, then.

Since it's been long enough to forget the hell we went through so far trying to get diagnoses, I wasn't really expecting anything today except a diagnosis of Sensory Processing Disorder. So, when she asked me what I was looking for and I told her what I was looking for, it was kind of shocking to get the flabbergasted look and the "I can't diagnose." My heart sank, my eyes filled and I almost burst into tears on the spot. I start babbling on about what has happened and everything that's gone wrong and all the reasons I just need this diagnosis and rambling about not qualifying for an IEP without an SSD diagnoses which means he can't get SSD services including OT and they said he could have OT if I got a diagnosis of SPD. She "gets the sense" that I'm "getting the run around."

So she goes to find Goofy's Psychologist. Who says SPD is not a real disorder. It's not a true diagnosis. It's not in the DSM4 and that means it cannot be diagnosed. by anyone. She says I can ask the Pediatrician for a prescription for "Sensory Processing Concerns", that may work. or not. so Dr. Psychologist gave her the name of an organization called The St Louis Learning Disability Association and strongly suggested I contact someone there for an advocate.

And so, I need my computer for more than 5-10 minutes a night. I need google and e-mail and most of all, I need my peeps! My support network of parents, grandparents, caregivers, educators who've been there and know it may be hell while you're there but in the end it'll be worth the battle. ...right? I really miss you guys.


  1. You NEED a computer!!! - EB

  2. Is someone fixing your computer? What happened to it? Hubby works on them...

  3. Oh no! What happened to your computer? Did someone displode it with your lighter? That sucks Mac, you need that lifeline. I'm so sorry that you're still not getting the supports you need for Goofy... "gets the sense that you're getting the runaround" has to be the understatement of the year :| Universe, stop dicking with Mac! She's good people!

  4. sending LOVE and GOOD VIBES and strong A$$ kicking vibes for the snots who REFUSE to get it. Hold on to happy, hon - put all that frustration in a lighter and displode it - and then alternatives will be visible.... We struggled with "borderline symptoms for 3 years - til they got bad enough, I got high pitched enough... it WILL be ok - someday