After much passive-aggressive phone nudging from myself, our service coordinator, and Ry's EI teacher, we finally got the follow-up appt. we were supposed to have with Dr. Allen, the child behavioral psychologist, in October. Yup. October. Lest you get too up in arms for me about the negligence of the medical system, I should confess that I did not call for the October appointment until October, which is a big no-no with specialists. I was busy, I was pregnant, mea culpa. Regardless, I do not think it should take 4 months and hassling from various members of Ry's service squad to get an appointment. Luckily, neither did Dr. Allen. He said that next time this happens, to tell the dippy secretary (I added the dippy...but she is) that we are an ongoing case and we need to be seen ASAP, because she tends to process everyone as a new patient regardless of what they say to her on the phone. I told you she was dippy. Anyway...
I have to say, I love this guy. We saw him twice last spring and I thought he was fantastic. First of all, he sits down with a notebook and TALKS to the parents for a long, long time and takes notes. I can't remember the last time I've seen a specialist whose nose wasn't buried in a laptop clacking away while muttering, "Uh huh, yup...okay..."
Secondly, he's actually interested in what the parents have to say. Too often I've been treated like a moron when bringing my child to a specialist. They often treat you like your child is a car and you're the clueless car owner who doesn't know the dipstick from the gear shaft (which, by the way, I don't, which is why I'm familiar with that kind of amused superiority). I may not have formal training in developmental delays, but I know my kid. It's my job to know my kid. I also know a decent amount about the types of therapy that work for my kid. Again, it's my job. It's nice to be treated like I have a brain in my head.
So, Dr. Allen talked to me for almost an hour about what's been going on with Ry for the past 10 months and did some testing with Ry (who spent the entire appt. running circles around the room and playing with certain testing toys while completely ignoring others), and he came to the conclusion that Rylan has...drum roll please...Rylan Dittrich-Reed disorder.
He was utterly baffled. He kept asking me questions, being surprised by the answers, shaking his head and taking copious notes. He said Ry doesn't fit the autistic pattern, which is what he said before. He has some of the sensory profile of an autistic kid, but none of the social symptoms, and it's totally bizarre that Ry is so interested in faces. He makes eye contact a lot. He's interested in people. He finds ways to socialize even though he can't talk and has trouble with signs. He seeks social attention. It just doesn't fit. Dr. Allen said he isn't even comfortable labeling Ry "narrow-band autism" or PDD/NOS (pervasive developmental delay/not on the spectrum), because his behaviors just do not fit either pattern.
He also agreed that while Ry has SPD it does not explain the magnitude of his speech and fine motor delays. He is way, way behind in those areas, like a year-plus behind, which is a lot at his age, and the odd thing is that he doesn't show any interest in fine motor skills.
Dr. Allen was also struck by the remarkable inconsistencies in Ry's case. Ry exhibits some behaviors that are far beyond his age level and others that are far below his age level. Ry had behaviors like pointing at words that emerged early, were consistent for several months and then disappeared. Ry also has behaviors like babbling and signing that emerged at developmentally appropriate times and then disappeared and then came back and then disappeared and then came back and so on and so on. It is common for communication to disappear with autistic children, but the way Ry differs there is that his babbling and signs disappear and come back every couple of months and during the interim he is no less socially engaged than when he is babbling and signing. They are not periods of withdrawal, he just reverts to more non-verbal communication methods, but he is still interested in social activities, smiling, seeking hugs and attention, etc.
Yup, the Boog baffled the behaviorist. Just to be clear, this guy knows his stuff. He is the leading child behavioral psychologist in the entire region, and he knows more about typical and atypical child development than anyone else we've talked to so far. When I told Ry's EI teacher that Dr. Allen was perplexed, she said, "Thank God. At least we're all on the same page!"
So, where do we go from here? We've had so much testing done already that there's not a lot left to explore, but we still have a couple of diagnostic options on the table. The most promising of those is apraxia. He wants Ry to be tested by the UT Speech and Hearing Center because he said they're apraxia experts. Apraxia + SPD has been my bet since I learned about apraxia, so we'll see if Mommy's intuition counts for anything. Apart from that, he wants to meet with all of Ry's therapists, Ry's EI teacher, Ry's service coordinator, and us to discuss Rylan. At the age of 2, the Boog has inspired his first think tank. I have a good feeling about this kid.
He gave us a couple of extra techniques to incorporate into our at-home and rehab center therapy sessions. He also would like Ry to play one-on-one with other children his age as often as possible. Luckily, Ry has a great little friend, Hayden, to play with, and we're connecting and re-connecting with some other friends as well.
I wasn't discouraged by the nebulous outcome of the appointment, because that's pretty much what I'd expected. I had a teeny fantasy that we'd show up and Dr. Allen would immediately say, "Oh, this child definitely fits the autistic pattern now," and boom: diagnosis done, mystery over, but I was pretty sure that wouldn't happen. Dylan and I have joked about showing up at the child psychology dept. at UT and asking if anyone wants to take on an unusual case study. We actually may come to that if no answers arise from the new testing and the meeting.
Does diagnosis matter, you might ask. Well, yes and no. Obviously, the Boog is the Boog and he's absolutely marvelous and we love him justasheis, so in that sense it does not matter. However, in order to deal with the bureaucracy of the special needs world, diagnosis can matter very, very much. It can decide what type of treatment he is eligible for and even whether he's eligible for treatment at all. As of this point, all we have him diagnosed with is SPD with global developmental delay. Believe it or not some special ed programs and some insurance companies do not consider either of those to be treatable diagnoses. Right now, we're still with Early Intervention, so we're golden. This fall, however, he enters the school system and that's where things get murky. It would definitely smooth the way to have a diagnosis to present them with.
I'm looking forward to the next round of testing, and especially the big Boog think tank meeting. It's always fun to learn more about our mysterious little Boog!