I dreaded coming into work yesterday because I am so consumed with all things autism that I feel like I can barely contribute at work. Well, while in a meeting, I received a voice mail. My SLP (speech language therapist) called to cancel the therapy appointments for the day for her and my OT. She said that since we didn't have a signed IFSP she was not able to provide services and that she had consulted with our OT and told her that there was no signed IFSP and she would likewise not provide services.
A little background: an IFSP is an Individualized Family Service Plan and is basically the contract, between the county and the parents, of what services are to be provided and what goals are to be met. We had an IFSP for Zach that started in July. I had requested a re-evaluation (new IFSP) back in October (verbally) and again in November (verbally) and December (in writing). They waited to address the IFSP until it ran out on January 10. The therapists continued coming and all told me they would have to backdate. The county coordinator also told me this. I was fine with this - thinking it seemed standard to them.
So why did the SLP all the sudden make issue of it yesterday? And why did she feel the need to let the other OT know what she was doing? (They work for different agencies) Our SLP knows that we are likely going to discontinue her services soon when a new ABA-based team is assembled. She also knows that I had coordinated for our privately hired therapist to observe both her and the OT with Zach yesterday. (intent??)
She cancelled 45 minutes before his scheduled session. She did not consult the county coordinator about her actions. When I called the county program director - she said a verbal OK from the county would suffice the continuance of the services and to let the coordinator know that the providers had cancelled and needed a verbal OK.
I need some opinions here - does anyone find this to be unprofessional? Does anyone find that what was OK last week suddenly not being OK this week suspicious? I know contracts are contracts, blah blah blah. How come it was OK to not work under contract one week after a week of not working under contract?
I feel that there was some other agenda going on here - and that no one had Zach's interest in mind, and the most important thing: in the end, Zach got shafted. And because of this, I feel anger now that I have never known.
Our new private therapist L. had her first visit with Zach. He cried. That's OK. Glad I wasn't there to hear the crying. I just need to make sure I give her the support she needs because that has to be hard for her too.
We had our appointment with the neurologist yesterday. She is particularly interesting because she has an engineering background (she has a PhD and an MD which is not all too uncommon for a neurologist.) Her resume reads so impressively - BA chemistry Princeton , MS Electrical Engineering Boston, Dartmouth MD and PhD, Fellowship Mayo Clinic). She said she doesn't believe Zach is having seizures, but that she still suggests an EEG. She also said that observing Zach was a bit of a deja vus. Apparently, her own now 24 year old son, had many autistic tendencies as a child like Zach's. He is now in graduate school in Colorado after an undergrad stint at Carnegie Mellon. She said, "Just ad me into your cheering crowd." I love that she gave us that injection of hope that all may be OK. It made me feel immeasurably better after the crazy set of phone calls I had to endure earlier.
So after the neurologist, we went to my mother's for dinner. She had a particularly bad day - the pain is back after her nerve block and she was unable to sleep the night before. However, she a made us dinner of homemade spaghetti sauce, meatballs and sausage that I found an additional comfort in.
The kids had an OK day according to MIL. Sophia had her "wear your pajamas to school day" event which she got a real kick out of. Slowly I was calming, calming, calming.
When we arrived home, Sophie and I read a book. I then pulled out my new laptop to play a game with her. She seems to do much better with the finger board on my new laptop (thank you dear husband for such an awesome early birthday gift) than a traditional mouse. She really engaged playing the game on pbskids.org. I was so excited for her - and first thing this morning she asked if she could try it again. She has avoided using the computer for the most part because of having difficulties with the mouse, although she is fine with the keyboard. I was very excited for her that we found some way to work around this for her, although I still want to work with her and a traditional mouse.
While I was in the office with Sophie doing our cool laptop online-game thing, I heard a bunch of accolades to Zach coming from the family room - and something about the word "pig" (I think). He's never said pig before that I know. I was really excited and happy - although when I thought to ask my MIL about it today - she couldn't recall what he said. We are all so tired, it didn't surprise me that she couldn't recall.
MIL leaves Feb 3. Don't ask me what I am going to do then...
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