Monday, April 4, 2011

About the Process

Here's my new magnet for my car. I like it above the PILOT letters. Makes me feel in control.
If you think it's easy to get a child tested for Autism, I am here to tell you it's not. I honestly have no idea how all these kids are walking around with a diagnosis. It's been the biggest pain in the ass. Insurance is a nightmare. The first thing I had to do was figure out where to take Riley for further testing. We had the diagnosis from Riley's therapist, but figured for school purposes, we would need a clinical psychologist diagnosis. So began the search.

The therapist gave me a few places. After a visit with Riley's pediatrician, I got a few more leads. I have called: The Children's Health Council, Lucile Packard Autism Center at Stanford, UCSF, and Kevin called the Regional Center of the East Bay. In addition, I tried to make an appointment with a developmental pediatrician through our health care provider, to see if she could do the testing. There is one. ONE developmental pediatrician. One. Of course, she is out on maternity and not taking any new patients. Of course.

I then called the Children's Health Council. I liked them. The man I spoke to was very nice, but they don't take our insurance and it would have been $5,000 out of pocket! So I called Lucile Packard. They set up a phone interview. I had to take a half day off of work to take the phone call. It was all of 5 minutes long-long enough to tell me I needed a referral from Riley's primary doctor in order for us to continue. I called about that referral twice. Called Stanford twice to ask if they got the referral and what the next step was. Nobody called back-from either office! I then took Riley IN to see his doctor-he needed a physical for Scout camp anyway. While there I asked about the referral. I left the appointment with a referral for Stanford, and also a need to take Riley to visit the lab for blood work and a bone age test (he's short, there's concern), and now we also have a referral for a visit with an endocrinologist (who we see tomorrow).

In the meantime, I gave Kevin the task of calling Stanford (my time is limited during business hours). He got through THE FIRST TIME. He set up a phone intake interview for a Wednesday morning. I didn't want to take any more time off so I rearranged my prep schedule with another teacher so that I could take the call. Kevin came over to my work and we waited. And waited. And waited. No call. The next day, while on a field trip with my students, they called. They wanted to know if I was available to talk? I told them I was YESTERDAY when it was scheduled. They apologized and said they would call at 4 that same day. Well, they didn't call at 4, or at all. Finally, Kevin reached someone on Friday and got the intake interview done. We are now "in line" at Lucile Packard-it's a NINE month wait. Perhaps they figure Riley will still be Autistic in 9 months, so no need to hurry. I actually think the issue is his age. If he was little, he'd get right in as early intervention is key. Oh how I wish someone would have believed me when Riley was little.

We still didn't know if our insurance would cover a visit to Stanford. We figured it would as that's where we take Quinn (to see HIS endocrinologist-he's also short, there's concern). Kevin needed to call. I had already called UCSF (Loved them too, so friendly and nice and they called back!) and got Riley on the list there-a shorter two to three month wait. Well they called last week and could get him in THIS MONTH! Only problem is our insurance won't cover that (but now we know that they WILL cover 100% of the Stanford Lucile Packard visit!) So we decided to wait out the 9 months at Stanford. They have an awesome Autism team of doctors and researchers.

Kevin and I then went (for FREE) to the Autism Symposium on Saturday, put on by Lucile Packard. I talked with a friend there and she encouraged us to go with the Regional Center, not to wait, that we would need their help eventually. So today we mailed off that packet. We will still keep our spot at Stanford and use it for a second opinion. We are certainly hoping that the Regional Center can get Riley in quickly, otherwise we may have to pay out of pocket so that we can speed up the process. Maddening. The whole process is maddening.

What's not maddening? Riley. This is from Halloween 2009. I love this picture.

Riley got scratched by the cat tonight. He kind of freaked. I think he's a lot more sensitive to things. Or perhaps he's nervous about his trip to the endocrinologist tomorrow-we have already prepared him that the doctor is going to want her own blood work done, which means a trip to the lab. We just visited the lab here, after his appointment with his regular doctor. It did not go well. He nearly passed out. I just stood there and cried. Luckily my mom was there to help. To say that things have been stressful around here is quite an understatement.

I've rattled on and on tonight, so tomorrow I'll tell you about the fun we are having at Riley's school.

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