Thursday, March 17, 2011

Boog Diagnosis!

In my head there are trumpets blaring some sort of dramatic fanfare. Unfortunately there's no way to convey this over the Internet...oh yeah except for splicing in some kind of sound byte here...but I am way too much of an Internet dunce to figure that out...

Anyway, imagine a trumpet fanfare...ooh...or a big dramatic drum roll with those drums the size of a kitchen table...ooh...followed by the banging of a great, big gong...Okay, so I guess you get the point.

Ladies and gentlemen, we have a diagnosis!!!

We had our Boog Think Tank meeting today with Dr. Allen (the behavioral psych), Therese (Ry's EI teacher), Helen (our TEIS service coordinator), Dylan (father of Boog) and I (your sparkling narrator). We crowded into a tiny room at the Rehab Center and sat on child-sized chairs while the Boog spun in circles and shrieked in the center of the room. It was a very professional atmosphere.

Anyway, so Dr. Allen asked Therese to talk about Ry, and then he asked Dylan and I to talk about Ry, and then he read some statements he took from Ry's OT and ST, and then he read us the results of the testing he did at our last session and the tests Dylan and I filled out at home and sent him. The end result of all of this information was an actual diagnosis! I had no idea we would be coming out of there with a diagnosis! Here is the Boog's official alphabet soup diagnosis:

PDD/NOS with SPD and probable apraxia/dyspraxia

You might be saying to yourself, "What the heck does that mean?" Well, if you've been reading the Boog blog, you should already know what SPD is (sensory processing disorder), and you should know he was diagnosed with that ages ago. Apraxia and dyspraxia are motor planning disorders, which fit nicely with the Boog's severe speech and fine motor delays, but unfortunately he's not quite old enough or advanced enough in the areas of fine motor and speech to officially diagnose him with either of those disorders yet, so we'll be doing more testing on that front when he gets a little older. I've suspected since he was about 18 months old that he has apraxia, so we've done a bit of research on it and that was no surprise.

Now for PDD/NOS, which is the new kid on the block. PDD/NOS is basically code for " on the spectrum, and not quite autistic, but pretty darn close". Basically, Dr. Allen ran some tests in which Ry would have to have scored at least 70% to be diagnosed with Asperger's or classic ASD. Ry scored 60%, but he clearly fits some of the classic autistic patterns, hence PDD/NOS.

At this point you might be saying to yourself, "Now hold on, you sparkling narrator you, didn't you say Dr. Allen said he wasn't on the spectrum?" Well, yes. He apologized for not getting us this diagnosis sooner, but he said that the Boog is such a complex case that it was very difficult to separate out his other particular Boognesses from the PDD/NOS symptoms. In fact he reiterated that while he feels comfortable with the PDD/NOS diagnosis, he still thinks a better term for what the Boog has going on would be "Rylan Dittrich-Reed disorder". Heh. Don't we know it?!

We are thrilled. THRILLED! I'm not sure I can accurately describe the relief having a diagnosis gives us. We've already known the Boog has special needs for over a year now, so we don't have to deal with shock of diagnosis that most parents have to deal with at first. We've been struggling with a system (Early Intervention) that really wants to help us, but for bureaucratic reasons, without a specific diagnosis, many doors were closed to us. PDD/NOS blows them all wide open.

For example, we're going to get to go back to the PLC as long as they have an opening for Ry! Long-time readers may remember Miss Sabrina who the Boog worked with last year. She was affiliated with the PLC and she was fan-freakin'-tastic, but we had to discontinue services there because the Boog didn't have a diagnosis on the spectrum. Now we do (unfortunately, Miss Sabrina is moving away, but it's still a great place and we'd love to go back).

Also, there are some researchers on UT campus who are interested in working with kids on the spectrum. Guess what? Door open!

There are ABA method training programs (with scholarships!) in Nashville and Asheville for parents of kids on the spectrum. Door open!

Dr. Allen himself and his associates work primarily with kids on the spectrum (I think he's been following Ry just out of curiosity, haha). Door open!

Lastly, there is already a large support network in place nationwide for parents and families of kids on the spectrum. Dylan and I have felt kind of out of place in the special needs parent universe up until now. We had no labels for our little guy and thus no group to fall in with. Door open!

Basically, I think this diagnosis is the best thing to happen to all of us since sliced bread (which actually I don't care for, so that's a terrible comparison, but I'm too excited to think of another). We're really looking forward to the changes we can make in his existing out-of-home therapies and how we handle his at-home therapy practice to better suit his needs and to seeing what new forms of intervention we will now have access to.

It's a good day.

6 comments:

  1. hooray!! it's about time, momma! soooo very happy for you and your family, and mostly for your awesome awesome boog! xoxo

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  2. That is so exciting!! I am so happy for you and your family:) Wow! You have been so patient in waiting for this day to happen. Way to hang in there.

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  3. a very good day:). hooray for open doors, dear dittrich-reeds!

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  4. Yeah! How exciting!! I am so glad that they were able to find a dx for him. Awesome!!

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  5. Hooray! What fabulous news! You have done such a fabulous job being such an advocate for the boog! proud of you!!!

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  6. I'm a little late here, but I am so glad that you guys finally have a diagnosis!

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