We just got back a few minutes ago from an appointment with Princess #2’s new neurologist and I’m floored. She’s so much more than what we’ve been dealing with in a doctor for the past few years that I didn’t even know what we were missing. She also has a specialty in Autism Spectrum Disorders and Behavioral Disorders that I wasn’t aware of when I first made our appointment with her. This woman is just amazing and I feel like she landed in our lap. Princess #2 loves her already which in itself is amazing, especially since this doctor is very no-nonsense. It often takes Princess #2 quite some time, if not a couple of visits, to warm up to someone. She even did her best to make eye contact with the doctor when the doctor requested it, but that was agonizing for Princess #2. Eye contact is such a struggle and so uncomfortable for her, even when she’s not thinking about it.
Dr. K is already going to take control of Princess #2’s seizure disorder and we’ll be getting blood tests to check the levels of Lamictal in her blood to make sure it’s appropriate and therapeutic. Even better or just as good Dr. K is going to be very, very hands on with our behavioral issues, sensory issues, and social issues. Dr. K already wrote a prescription for Princess #2 to get occupational therapy at our local autism therapeutic center and she said that she can guarantee Princess #2 a spot there because she consults at that school/clinic.
Dr. K already made another appointment for the 22nd, and said that she’s not only sending Princess #2 for special therapies but she’s going to do therapies herself in her office. We won’t need the Developmental-Behavioral Pediatrician that we’ve been on the waiting list for. That we’ve been waiting literally years to see. It’s like we have this amazing new all-in-one doctor and she’s willing to do it all with us, not only willing but stepped up and offered. When Dr. K asked what I had in place for Princess #2 outside of school and I told her we were on a waiting list for a Developmental-Behavioral Pediatrician to help us with the sensory stuff and behavioral stuff, Dr. K’s response was, “Why would you do that? You don’t have to keep waiting. You have me. I can help you with all of this. Not just refer you, but actually do this myself one on one with Princess #2.”
What in the HUH??? Is this woman for real? Is it already Christmas? Did Santa come early? Was there an angel sitting next to me this morning? Did God answer a prayer for me so directly and so precisely “to order” that if I were to call it a coincidence lightning would strike me?
She’s going to be hands on and in frequent contact with our school. She wants to know literally everything about Princess #2 academically, she wants current and past IEPs, she wants progress reports from the teachers before each and every appointment that we have.
And for the part that made my heart sink. She’s going to evaluate Princess #2 herself, which in and of itself is not bad. Nor did it make my heart sink. I wish our last neurologist had done this, as our child psychiatrist had done in obtaining the diagnosis of PDD-NOS “with the likelihood of Asperger’s Disorder.” But Dr. K believes that Princess #2 doesn’t have Asperger’s Disorder. Dr. K concurs that Princess #2 should have had the PDD diagnosis, that she undoubtedly has ASD but she has more developmental and sensory issues apparent even just during our meeting today that people with Asperger’s Disorder don’t typically have, and if they do not to the extent that Princess #2 does.
A new way of thinking, even though when the new DSM comes out it “won’t matter” since “autism will be autism no matter what type it is.” In my head there are a lot of complications to this anyway that I can’t really express, but they’re there. How do I digest all of this? Do I relearn what I know or think I know? Do I stop researching so much about Asperger’s Disorder? What type of Autism, other than “typical” do I put my energy into researching? We’ll have more answers after her next couple of appointments but now it feels like we’ve backtracked even though we’re probably actually making headway that I didn’t even realize we needed to make. I’ve felt like I’ve been treading water, nearly drowning and in over my head, not knowing where the life raft is. Maybe this explains why. We were close to the right diagnosis but not quite there… the peg just needed to be shifted slightly. Just how much it needs to be shifted won’t be clear for a little while, but there are answers and help to be had and it’s not just in spitting distance. It’s finally HERE.