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.

Tuesday, March 1, 2011

A Few Boog Answers?

At speech therapy this morning, I happened to glance over at Ry's goals sheet and notice that, oh my gosh, there's actually something written in that normally blank diagnosis box.


Ry's speech therapist never discussed a diagnosis with us, but there were two things written there: oral phase dysphagia and mixed receptive-expressive language disorder.

I'm not upset, because she did his re-evaluation a few weeks back and since then has been out sick, so I'm sure the substitute just didn't know to discuss the diagnoses with us. I am, however, surprised and happy that some component of his delays are being called something I can actually tell people, though, "He has sensory processing disorder, mixed receptive-expressive language disorder, and oral phase dysphagia" is quite a mouthful. I'm not sure how one even pronounces "dysphagia"...I digress...

For those of you who don't have degrees in speech pathology, here's what Dr. Google has to say about oral phase dysphagia and mixed receptive-expressive language disorder:

Oral phase dysphagia: Definition:

It is the inability to manipulate food and liquids in and through the mouth as a result of chewing difficulties, weaknesses and discoordination of tongue, and/or reduction in labial and buccal muscle tension and tone.

There are two types of oral phase dysphagia: apraxia of swallow/reduced oral sensation and reduced labial tension/tone, out of which I'm betting he has the former (who said he had apraxia of some kind, like a year ago, oh yeah, that's right, ME! Mama's intuition, baby).

Mixed receptive-expressive language disorder: In general, mixed receptive-expressive language disorder is characterized by a child's difficulty with spoken communication. The child does not have problems with the pronunciation of words, which is found in phonological disorder . The child does, however, have problems constructing coherent sentences, using proper grammar, recalling words, or similar communication problems. A child with mixed receptive-expressive language disorder is not able to communicate thoughts, needs, or wants at the same level or with the same complexity as his or her peers. In addition, the child often has a smaller vocabulary than his or her peers.

Children with mixed receptive-expressive language disorder also have significant problems understanding what other people are saying to them. This lack of comprehension may result in inappropriate responses or failure to follow directions. Some people think these children are being deliberately stubborn or obnoxious, but this is not the case. They simply do not understand what is being said. Some children with this disorder have problems understanding such specific types of terms as abstract nouns, complex sentences, or spatial terms.

Yup, well, he doesn't tend to understand a lot of what's said to him and he doesn't talk, so that seems to fit. Unfortunately, the prognosis for mixed R-E language disorder is not so good. Even with early intervention, he'll likely have problems communicating all his life. How much progress kids with this disorder make, though, varies widely, so we'll just have to wait and see how the Boog does.

I still think these are only part of the picture, because I'm convinced he has apraxia, since it often presents with major speech AND fine motor delays and he has both. He has motor planning problems all over his little body, and apraxia seems to fit that.

It will be interesting to see what UT Hearing and Speech says when we get him evaluated there. For now, though, more puzzle pieces always make Mama happy :).