Today we got an official autism diagnosis by a not-so-great doctor who specializes in autism. (Actually, she’s probably a fine doctor, but just has absolutely NO bedside manners).
It shouldn’t be a shock (because I know that it is typical for I.S. babies). But it was. Partially because he’s on the young side for an autism diagnosis, but also because I thought he had been doing better and doing less of the things that were concerning me a few months ago when he took the M-CHAT at his 18-month pediatric visit.
After about 1 1/2 hours, where she was mostly glued to her computer and typing and not actually interacting, she said, point blank “I have no doubt that your son has autism”. Now, I realize that when you read that, it just sounds like she’s a straight-shooter. But, straight-shooters are fine. You would have to hear her voice and her tone. But that’s just how she is. She barked at her employees for everything, and I really don’t think Zane knew how to take her either. He interacted fine with another friendly male doctor. It’s strange to me that this particular woman chose a profession where she deals with small children on a day to day basis, because she certainly wasn’t warm and fuzzy.
After the announcement of the diagnosis, she then overwhelmed me by telling me that basically all the therapies we’re getting through ECI are crap (not her exact words, but close) and that we need to be doing 30 hours a week (yes, 30 hours per WEEK) of intensive communication therapy, plus MORE PT, MORE OT, etc. She wants more genetic testing, another sedated MRI, a BAER hearing test, all the records from any doctor he’s ever seen (including pre-natal), etc.
I was a bit of a mess when I left the office. Not a tearful mess or anything… I guess because even if this sucks, we’ve been through worse. But, I was just overwhelmed and frustrated. Thankfully one of the Fellows that was observing the evaluation was the same one who had been with us in the hospital when we started ACTH, as well as in the office with Dr. Von Allmen. We have had conversations about Dr. Von Allmen and her approach, and also personal conversations (he and his wife were expecting a baby who is now almost a year old)! So, he knows me a bit and knows how much I like Dr. Von Allmen. He stepped out of the room to walk me to the front and he explained that this particular doctor is a bit old-school and that although she’s a bit gruff, she’s really good. I am thankful we knew him and that he took the time to tell me that. However, I’m still not sure I’m going to continue with her for the long haul. I’m letting it process before I decide.
After losing most of my clients during all of the IS treatments, I was really itching to start working again. But after a few setbacks, the thought of having to start over and re-build my business from scratch was frustating. So, I actually went on to Monster.com and found what I thought would be a perfect job (it combined engineering, proposal writing, photoshop and design). I applied and heard back right away, but after finding out that the job was located 40 miles away, each way, via interstate, I opted not to go any further with interviews. Boy am I glad now! I already feel like we are doing a lot of therapy, so an additional 30 hours per week sounds crazy, and that’s not including travel time. But how do you balance the time commitment of these therapies with the cost of these therapies, since most will be out of pocket? I think we’re going to have to re-evaluate our budget. Still, I’m thankful that I’m able to give him a lot of one-on-one attention that just wouldn’t happen if I were working full time.
For now, I’m beginning the process of looking into everything the doctor mentioned and looking at all of the materials she gave me, which is a pretty thick stack. Tomorrow I’ll get Zane on a 12-18 month waiting list for a particular therapy group for autistic kids, and delve a little deeper into to intricacies of autism. A trip to Barnes and Noble might be in order, which Zane will love since he likes books!
I guess we’ll figure out a way to get past this little roadblock, but it just stinks that my little man has to endure all of this after everything he’s already been through.
Our Journey with Infantile Spasms 