Tuesday, January 27, 2009

Liv's Mainstream Issues

Livie's had some issues over the past few weeks, and we finally have gotten to the root cause, so to speak. Last Monday, the Speech Therapist said she noticed her one tooth on the top left was not doing good. Linda had somewhat written off the comment as just her noticing Liv's 'shadow' on that one tooth, an old 'war wound' from her days when reflux ravaged her enamel and caused several cavities. But Linda looked on Wednesday and saw what the therapist was talking about: a bubble above the tooth. She immediately called Liv's dentist and got an appointment and a prescription for antibiotics. The first liquid prescription made caster oil taste like Coca-cola, Livie absolutely refused it, which is unusual for her, she normally will tolerate almost anything we give her, so we knew it was bad even before we tasted it. Linda, had the prescription redone for a chewable, much better results and we held the infection at bay until today's Tuesday appointment.

The verdict came in from the dentist...abscess, the baby molar would have to come out. She had a choice of having Liv go under general anesthesia or just do it today in the office with Novocaine. I am proud to say, for both my girls, Linda decided to go without the general (both for her and Livie!) and do it today; Livie bore the brunt of the procedure with incredible resilience. She went through the Novocaine with nary a flinch, and really only got really upset when the crack sound of the tooth coming out was heard (yea...I flinched and cringed too when Linda described it that way...thought I'd share the feeling).

So that was the 'emergency' procedure, but we also had Livie's bi-annual visit to the developmental pediatrician yesterday. Let's start this monologue by saying that, as with most everything we hear from mainstream doctors related to autism, I do not hold this doctor's opinions about autism and what to do in such high regard. Don't get me wrong, for many many people dealing with autism, especially those new to the diagnosis, a dev-ped is the perfect place to be to get your bearings and even to get guidance if you are not, shall we say, up on what to do and how to do it with regards to autism. For people like us, however, dev-peds are a necessary evil...like lawyers. You need them as gatekeepers and figureheads to sign the generic papers stating that this therapy is needed or a 'real doctor' to say Livie is indeed on the spectrum.

Linda had called me at work yesterday, nearly in tears, about what this doctor had said in the appointment. Some things, we agreed with. Livie has indeed gained a lot of weight over the past 6 months. But it was her reasoning an logic around why she gained and how we should deal with it. "You know, these reward based therapies will often cause them to gain weight." 'Scuse me? OUR schools 'rewards', will normally consist of praise; if food, it's 1/4 of a GF/CF M&M. The real problem is at home and that we love to feed her and that frequently, her mandings center around food. "Well, if she asks for more food, just say no...you've had enough". OOOkkkayy, she's communicating, she's asking for more, your solution is to shut off rewarding the communication with not even a grape? We'll figure out the diet thing on our own, lady...oh sorry, Dr. lady.

Next comes the grilling on our latest venture regarding the trans-Cranial Direct Current Stimulation in conjunction with language therapy. "You're going to Long Island twice a week? I haven't heard about this, I don't know about it's efficacy. What is this doing to your other kids, you guys being away?" OOOO, hitting below the belt, talking about being away from the other kids. It's a decent point, but this is only a one year stint and we will eventually work this into a once a weekend thing and incorporate the other session into her 'normal' therapy schedule.

Then she gets into whether or not it was time for a change to a new speech therapist. Now I'm getting her agenda; she does not like the idea of trying to get Livie to speak. She also is not happy with our current school. But Livie had already shut her up with using 3 independent signs during the visit for things not in view (this courtesy of her current teacher's ideas on signing). Nevertheless, she namedrops two other programs in the area which are good, but we had written off already as not great due to their rigidity using discreet trial ABA or not conducive to Livie's needs.

Then, she get on Livie's attention span. She would not 'play' with the Doc's toys that she had provided and was beginning to annoy the doc by putting them in her mouth instead. Linda says "She does not play appropriately with toys, she never has". DUH! Check the DSMIV, doc-tor... it's, like, one of the potential CRITEREA for autism! Then she comments "Well, for the attention, I would have prescribed Risperdal, but with one of the side effects being weigh gain, I'd have to say no!" NOW WAITAMINUTE....RISPERDAL? Hey Doc? Did you actually READ what the uses for Risperdal regarding autism ARE? Or do you just play word association and are programmed to "think autism, think Risperdal"? I know there are very good uses for Risperdal when it comes to controlling an out-of-control situation, but attention span AIN'T one of them:

Linda and I talked through the points that she made and, as always, we have some work to do. I may sound arrogant, but I get the impression that this dev-ped does not know a whole lot about real-world autism. Oh, she might have a half dozen to dozen autistic children in her practice, but I think that she might be relying a little too much on the standard autism playbook. It saddens me to think that this scene may be played out all across the country, with people who may hold doctors and their degrees on such a high pedestal as to not question whether they REALLY know all there is to know about treatments, therapies and behaviors. It also saddens me to think we will probably stick with her, because as Woody Allen put it in the end of Annie Hall...we need the eggs. I'd prefer to have a dev-ped who would work with us and collaborate (someone well versed in autism would be nice too), but we'll have to settle for one who just lays eggs...


VAB said...

That's definitely what they can be like. Oh, well. The main thing is that you guys know what is going on. Autism is such a broad spectrum, nobody can know what is best for an individual on the spectrum unless they have spent vast amounts of time with them, and doctors just don't -- that's what parents are for.

Husky Special Ed said...

Thank goodness you guys seem to have a handle on the situation. It's so easy to just believe what dr.s tell you - they are the "experts". It can be such a confusing journey!