Tuesday, December 10, 2013


Some things aren't fair in life, I get that. But some things are downright shameful. Five adults fighting to give a child minimal help when he desperately needs an immediate multitude of assistance is excruciatingly painful to witness. And none of these seemingly coherent and otherwise knowledgeable adults seem to carry an ounce of remorse, guilt or humiliation to be a part of this poisonous clan.

Judah's IFSP was a quick review of goals we had agreed on, which flew by so fast I couldn't even keep up with where we were. Once we get a copy of the finished IFSP my brain will get a chance to comprehend that scattered pile of thoughts & ideas.

The meeting was extensively discouraging. Another 2 1/2 hours and still didn't finish. We won't finish at an agreeable place. That was distinctly evident to me when the coordinator in charge, aka the person with all of the authority, opened up the parental rights book and plopped it down in front of me, pointing to a section of the page saying, "This is how you file a grievance." I hadn't asked.

My hopes of him getting what he needs have melted away and slid out the door.

Scott had a hard time pulling back. He got upset and said something to the effect of 'How could you POSSIBLY believe this is anywhere NEAR giving him services?!' I was beginning to see the reality of voicing our thoughts as pointless and broke down crying a couple times.

They said he won't qualify for their services during the summer unless he shows regression over Thanksgiving or Christmas break that we can all agree on. Basically the rule is that if the kid is significantly doing worse then he can get summer services - makes me wonder if any of these kids get summer services. They all agreed at this point that he does not qualify. I challenged this a lot.

Since the head honcho was present we asked for laws, policies, basically proof of what they were telling us. They had nothing to show us. This was largely why her presence was needed at this meeting, we had all agreed on that at the first meeting. This is why she was invited, but it felt like she was there solely to shut us down, in every direction.

Have you ever heard of "consultation" therapy? This is what they use. The speech therapist said that this gives Judah 20 minutes (his IFSP states he should be getting 30) of therapy and then the therapist uses 20 minutes to consult with the teacher. The rest of the month his "therapy" is integrated into the classroom through the very busy aides, who are not therapists. His therapist does "push-therapy" (done while he is in the midst of class) on her monthly visit. We have requested pull-out therapy in writing since we have seen benefits from this in his private therapy. We were told Judah cannot handle over 20 minutes of therapy. I told her he does 50 minutes of 3 different types of private therapy every week. After that amount of time he is "done". He needs 45 minutes of therapy minimum. It is extremely difficult to hear other people who see your child for 20 minutes once a month, or once every THREE months (OT) and have only worked with him twice, tell you what he can or can't do. It's insulting. It's a question to ask the parents, not tell them.
The communication we have with them is less than minimal. At every meeting Scott & I reiterate how important communication between everyone on the team is, & to include his private therapists in that. Every example the teacher & therapists gave of Judah at the meeting ended with me asking questions about it, because we had no idea! The program coordinator (the lady invited who can authorize the big stuff) said.. "What is it that you want to know? Do you want to know every detail of his day??" The teacher claimed at the meeting that she just doesn't have the time to write in his communication notebook on a daily basis. There are 6 students in Judah's class. She has 3 aides, so a total of 4 adults working with these kids. The coordinator suggested a weekly note in his comm book. I told her that we needed daily. Did I need to remind her that Judah can't talk? Or the random events that I've just happened to find out about? I have no idea what happens, how he progresses, works on his goals, etc.

I've picked him up and he's crying.. the teacher tells me he was like that all day and can give no explanation... and of course tells me not one detail about his day and is insulted that I asked who worked with him that day. Or how about when I just happened to find out (after drilling the teacher over the phone about what had happened at school when Judah came home an hour late in wet, summer clothes on a cold day) that they had to carry him inside doing a 2 person lift because he had a huge tantrum in the rain. I'm his mom. I want to know. I need to know. I ask them about his day every single time I pick him up - sometimes I get one word. Sometimes I get a few sentences. 
It's as if they don't want to share what is going on at school with us. It's really bizarre. 
The autism specialist told me that I wanted to know what activities & skills he was using in school so that I could turn our home into a school environment (which she doesn't recommend by the way). Immediately after that uncalled for & ridiculous statement, the OT asked if I was planning on homeschooling. What?! I'm asking how my child is doing in school & what is happening there because I care about my kid, that's all there is to it. And perhaps if he is given the opportunity to share his school progression at home he could experience confidence & pride, which leads to growth.
We were given excuses as to why assessments & evaluations were not helpful at this time after we requested them in writing. Terrific, we still want them. After digging through his file, I found that a speech assessment was never even done at eligibility - I'm assuming it has never been done at all. They said their consultation data shows this info. We asked to see this & that stunted them. They didn't give us any indication that this would be happening.
We were told that he doesn't qualify for summer services because he is making progress. Apparently qualification for summer services is determined by how he is doing after he comes back from Thanksgiving & Christmas break. Who knew! We were told that there is a "mathematical" equation involved.

The help they are presenting him with and limiting him to is mind-boggling. It is unimaginably unfair. It's inconceivable.

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