Sunday, February 22, 2009

The Meeting

To say I did my best is likely not accurate about the meeting with the county. Although I wasn't nervous - I just didn't have the fight in me. The fact that I had a serious amount of mucous in my head pushing on my nasal cavity and into my cerebral cortex, likely didn't help. Let's just say I didn't have game. That evening during dinner, my temperature spiked up to 102 and left me shivering on the couch for the rest of the night. I haven't had a fever do that to me in ages.

So what did happen?? Well- the county low balled us on the amount of time of services. They made a comment that they felt the 40 hours of recommended services by many sources was "child abuse". When Steve considered this, he thought that 6 months of no services after a diagnosis, with this thought process in mind, would likely be considered "child neglect". I don't think these people have that logical capability, but he is indeed correct. Gosh, he can be so insightful. I am so glad he is playing on our team. I just wish he was more vocal. He said very little during the meeting. I keep in mind that he was sitting around a bunch of women, and likely didn't feel he could be as frank as he would be with the guys at work. However, I think that is exactly what these women do need.

I am used to dealing with men. I am the only female engineer in my division. I understand the way they deal with things, or at least am more used to it. They don't worry about hurting feelings like women do - although in the current work place they do have to maintain a certain composure in order to stay politically correct. Sometimes I feel bad about this - because it makes communications a lot less honest. This whole experience of Zach and his disability has left me in a new realm. It is dominated by women - and the game playing is far different than what I am used to. I am usually one of the best verbally in just about any conversation I have at work. These women have far more practice than I do. And they have a lot more tricks up their sleeves because of this.

Anyhow, I did fight them on the hours for L. our current ABA therapist. I then told them I would be subsidizing whatever they wouldn't give us for her privately, as we thought necessary. They told me we couldn't do this. Pound salt ladies. You cannot tell me what sort of care I can give for my child. I understand that she has a contract in place, and that she is grossly underpaid for what she does. They can take a hike.

The the NEW ABA therapist was at the meeting. I have heard that H. is terrific. They gave her 10 hours. Then they cited all she was to do with those 10 hours. I turned to her during the meeting and asked - "10 hours doesn't sound to me like that is enough time to meet all the things you need to do. Are you OK with this?" To which she politely smiled and nodded. I don't know if this was her game face and if she was just doing the female dance of negotiations, or if she truly felt this was enough time. I do not know this therapist in the least - but will likely field the same question to her in private this week.

So what services will Zach be receiving? 18 hours ABA, 2 hours speech (still don't have a therapist), 2 hours OT, and an hour and a half play group for a grand total of 23.5. I am still looking at possibly hiring a student therapist in the evenings to supplement this. All in all, this actually corresponds to what Yale was recommending for us, so I believe that is why I didn't fight it much more than that. I know that the Lovass technique recommends 40 hours for the most effectiveness, but the folks at Yale met my child and made the recommendation of 20 and I really give them more consideration since they know who my child is. Perhaps that is why I didn't fight this. Perhaps, this felt more about money than it did about receiving the services for my child, and I just felt that along while he is getting something, I'll make sure he is getting what he needs - and if that means I have to pony up some of the $$ - well, we already have been doing that. I also felt that if we could have the appropriate follow-through at home that this would likely tally up to the 40 hours. I am probably wrong. I am not an expert in this stuff. I will definitely talk to our new therapist next week.

Some other notables of the meeting: I was told that we had to meet at the county rather than in our own home, because the new therapist didn't have her child abuse certification yet (does that teach her the appropriate way to abuse a child? ) This made no sense to me - she would not be dealing with my child, we would be having a meeting for gosh sakes. And further more, there would be 5 of us there! Well, somehow, they told me that if I were to meet with her next week at my home, along while there was someone else present besides me (a sitter) that it would be OK for her to be in the house. Huh? Well, we had a sitter at the house right now for the kids - so why couldn't we have met at my home for this meeting? Rationalization vs. real logic. No science degrees in this room I tell you.

Well, I had been notified that there was another couple looking for similar services. They were there at the county right after we were there, with these looks of pain of their faces. Ahhh.... the truth. Well, the odd thing was, I was fine with the meeting at the county building. Why did they have to come up with some bogus rationilization rather than just say "would you mind if we met here? it would make things easier for us." I am not closed minded with this stuff. In fact, I told the program coordinator upon my exit, that I understood there was another set of parents looking for similar services for their child and that I would appreciate if the county could pass along our contact information to them, since we were both going through similar circumstances and could benefit from one another. My friend seemed to think their was a fat chance that this happen. If they were truly trying to help us - I believe this would be a given. *sigh*

I did grandstand about the fact that the professionals working with my child likely new that Zach had autism before we did - and that I would have appreciated that they brought this to our attention sooner, rather than us figuring it out for ourselves. I went on to say that the program coordinator has an advocate role for the child to play, and I would have expected as a professional with such a role, this should have been addressed sooner and we would have certainly appreciated it. I also mentioned that I knew of the difficulties facing these practioners when they know something is more serious, and how do they tell the parent when they are not legally or even professionally qualified to give the diagnosis but know damn well that the kid is autistic? I cannot imagine being the ones to deliver this news. I also know that there are several families out there whose reaction would be denial. But this is about the child's interest, not the uncomfrotable situation this would possibly evoke. With the child's best interest in mind, this should be a given that there should be some reporting structure to alert someone of the possibility of autism. My recommendation was that they train all the therapists in the identification of autism's early signs, give them a requirement to report such signs to the service coordinator, and have the sevice coordinator make the strong recommendations to the parents to have a developmental pediatrician conduct and evaluation to see what is going on. This would have saved us some time and energy and even a bit of grief (or at least gotten the grieiving process started earlier and over with earlier too.) I emphasized that not all services are alike when it comes to kids on the spectrum, and that the likely OT, PT, or Speech Therapy the kid is receiving is not only not enough for a kid on the spectrum, it is highly inadequte since they are not targetting the autism, but a symptom.

I also granstanded on the fact that services cannot be delayed , and that a month of time in a child's first 3 years of life is a huge amount of time to influence their developement, and 6 months even moreso. I discussed the brain's plasticity during these critical years, and how the impact of services now can likely alter the life of the child. They must know this. That is what Early Intervention is about. However, it is likely they are used to more children with developmental delays (speech issues, motor abilities, etc.) than autism;a much bigger beast than these. (Not to say that these items are not important too.)

Wells that all I will dump out of my snot encrusted brain for now. I would really like to talk to that other couple. They looked like someone I would befriend. They looked in pain. This is hard stuff I tell you.

Services begin March 2; 5 months after we realized Zach had autism, 7 months after our speech therapist had an idea he was. *sigh*

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