Continuing Frustration

So, I just finished several phone calls trying to get the neuroconsult for Elise that her doctor ordered. Apparently the doctor is not following the correct new "process" and so I'm just getting the run around. Then, when I end the last call to which I was referred, I read exactly what the doctor had written out on her prescripton pad. It says "2 y.o. girl w autism & language regression neuroconsult". My God, no sooner was the word autism out of my mouth before I started getting a lecture that the neurologists would not see her, they'd just kick her back to neuropsychiatry. I thought that was interesting since the neuropsychiatrist is the referring physician. Why in the hell is everyone so hands off when the word autism is used? It's like some death sentence to a child - at least a living death. Elise is a person with real medical issues that need testing and help. She's not someone to be written off simply because her collection of symptoms are closely related to the collection of symptoms deemed by the DSM IV as autism. Autism is a collection of symptoms, some of which can be helped with various medical interventions for some people. It's so frustrating the lack of help. I'll be back on the phone with the referring psychiatrist to tell her that I'm getting nowhere with this consult. What a waste of time! She will get things done that's for sure. Thank God we have her on our side.

That said, we don't expect to find anything with the consult, but she wants to rule out anything because Elise did have a major setback in December 2008. She was one way before her hospitalization for croup, a child with autistic symptoms but developing relatively well. Immediately after the December hospitalization, she was completely non-verbal and withdrawn and began losing skills she used to have mastered. Something happened right in that time period. Whether we'll ever know what or even if it's important to know what happened remains to be seen. However, it should at least be investigated on the surface. I'm not a crazy mother, everyone involved in her daily life was able to see the profound change. Emy was shocked at the change when she returned from her vacation and saw Elise 2 weeks after this happened!

Tonight things got a lot better. GG, our next door neighbor stopped by and visited for a couple of hours. It was nice to have good company and not be focusing on all of this. Elise also had a great night. First, hubby sat Elise down to draw on papers. She sat willingly for 7 minutes straight coloring. She can make circle shapes now! Then, when GG arrived, she came up to her with her arms outstretched. She became overwhelmed by the hug and went off on her own, but it was so sweet to see that she wanted to be affectionate. When GG was leaving, Elise initiated playing with her. Elise was reaching out to touch her and then turning away and laughing. She also brought out a puzzle to do in the room with us. She has a real connection with GG. It's funny because Elise really doesn't know GG very well, but she's always been crazy about her. We need her to visit more often! Actually, this makes me feel good about how well she'll do if she gets into the UCLA program and her grandparents are able to help out by taking her there and staying with her sometimes. She will love the individual attention from them.

Tomorrow, I'll take her to see Dr. M, her pediatrician. Of course, she was finally much better tonight and probably doesn't need to see a doctor. However, her appointment is at 8 so there's really no way to cancel at this point. It'll be a nice double check to ensure she doesn't have a sinus or ear infection. Later, we'll call her psychiatrist to get the neuro consult thing straightened out. Then, another call to the service coordinator who is ignoring all of our communication. By Weds, we need to be having an open dialogue with UCLA about our insurance coverage issues. So many things, so little time.

I bought some more foods clear of dyes, artificial flavors and pesticides. I also started throwing out some items from our pantry that have these things. Fortunately, we really didn't eat much like that on a regular basis, so this part of the new diet isn't a huge adjustment for us yet.