Of course I was nervous as always taking Jake to see Miss Cindy at Tips for Children. Jake liked playing with the toys, but wasn't interested in anything Cindy said. He got downright P.O'ed when she tried to get him to do things for her. We talked a bit and mostly had an interview/observation day. I really like Cindy and I think we have a lot in common. I'm not sure if Jake shares my enthusiasm, but I hope that changes over time.
I'd love to say more about today, and I'll try in a minute (rant first please), but I honestly have information overload. It seems like I've filled out the same paperwork 100 times, I've answered a million questions asked by the doctors and professionals, and I've scheduled a half dozen appointments for this month. On top of that everyone (family, Steve) wants to drill me "what did they say?" "did she have a prognosis?" "what does she think of Jake?" "how long will he have to do therapy?" I have even more questionnaires sitting here on my desk. Linda, the office manager at Tips was asking me when I could bring by the prescription (that I forgot) and I suddenly felt like I needed to run out of the room. I told her I had to call her back and promptly left. I really felt at that moment that if I was asked one more question or if I needed to schedule one more thing, even a trip to the bathroom or a diaper change, I was going to explode.
We are planning on going out of town next week for vacation (thank the Universe) and the next week Miss Cindy will be on her own vacation, so Jake's therapy will start the last week in august, a couple of days after he sees the Developmental pediatrician. Cindy said that the diagnosis may be confusing and complicated, but that will be OK, as the therapies are up to the therapist, and I truly think that she is knowledgeable and I trust her to give Jake and I the tools that we need.
She noticed that Jake still seems very low toned and clumsy. I told her about the video on this blog and she asked to see it. She seemed to react with a bit of shock, saying "Oh no, thats not typical at all." only hammering in my own belief that we could have been helping Jake MUCH sooner. Alas... Well, at least 'maybe' some of the therapy will indeed be physical/medical, and that will help with our insurance coverage. Meanwhile we will be paying the $100 per hour fee weekly, or as much as we can and waiting for the insurance company to reimburse us. Going "out of network" has been the best thing we've done, but puts a bit of extra stress into the situation.
I'm sure there's more I could say, only I'm really at a loss today. This was a really hard visit and I wasn't expecting that. I was expecting the beginning of the "miracles" that I've heard others who begin OT and speech therapy talk about. Instead I'm confused, angry, and extremely discouraged. I watched the therapist check "no" on almost everything on her paper, and realized how truly deficient Jake's development is in so many areas. Cindy seems confident, and I truly hope she can work magic with Jake, but Hope seems hard for me to come by today. I have been reading a bit on a message board for adults with aspergers and autism and I'm amazed when these well spoken and intelligent people say that they had these same issues as small children. I really really want to believe them, but days like today I have a hard time doing so. I know that I will never let any person, money issue, or selfishness of my own will ever come between Jake getting what he needs as long as I am alive.. but just what does the future hold for him?
Enough typing through my tears. I think that Mommy needs an attitude adjustment in the form of a nice glass of wine.
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