Tomorrow is our first day back to school. We've taken about 3 weeks off for the holidays and we have to reluctantly get our collective noses back to the grindstone.
Of course, I have to go all out. No half hearted start up for me, so sir-ee. Tomorrow, we'll have school, speech therapy at the school, and 2 hours of Cub Scouts.
Wednesday, we'll start A back at speech and OT. At least for a month or so. On the 23rd, we meet with the school to see what services they will provide and what they want from us in return. I also have to call A's social worker and see where we are in getting out trial date for Medicaid.
In all honesty, I'm beginning to feel defeated in my quest to get my son the treatment he needs. I feel that I have lost the fight before even getting the chance to speak for my son. Every one has already decided that his need is not great enough. The school has the teacher from the special Ed Class coming to the evaluation. This is the class for intellectually disabled children. The state has denied our continued coverage until the hearing. They say he doesn't need 5 day a week treatment. (He does but his therapist can't request it because the state will only pay for 10 sessions a month.)
So we are at an impasse.
The state says he's doesn't have a high level of need.
The school says he needs to be in a special ed classroom.
The therapist say he is profoundly speech disabled and severely developmentally delayed.
But no one but me really knows this little boy.
It funny...when he goes for these evaluations, I tell the evaluator what his problems are, what are his strengths are, and how to get the best out of him. When the test is concluded, they are always so surprised that I was right.
I'm not sure why they are so shocked.
Why shouldn't I know my son best.
I wish I could get the state, the therapists, the judge, and the school all together in one place and just sit them all down and say:
"This is my son. He has Severe Apraxia of Speech. He is also dyspraxic and is developmentally delayed. However, he is extremely intelligent. His cognitive abilities are above average. He is clever, creative, and loving. He will someday be a productive citizen if we can get his body up to the speed of his wonderful mind. I will do all that I can to make this happen. This is what I need you to do to help. A needs 3 one-hour individual speech sessions each week and one one-hour occupational therapy session. I would be interested in adding one or two group speech sessions and possibly a group OT session each week. We can do the group sessions at school, but A will not be enrolled in the special-ed classroom as he is not mentally handicapped. I will make sure that his education is equal to or superior to anything the school can provide a "normal" student. If you could make sure we can get appropriate therapy, A will turn out just fine."
You think they'd make that happen?
Well, tomorrow we catch up on math, start teaching A how to blend sounds other than "fat cat sat," and introduce some new triangular pencils and see if M and A can hold those a bit better.
Wish me luck
2 comments:
I did the rubber band trick with the oldest zoo child. These current two have fine motor skill issues. They use a modified quad hold instead of the two fingered hold with the third as stability. Grips don't help because they feel funny.
But the two year old...perfect pencil grip. go figure.
Keep your chin up! The squeaky wheel gets the grease.
My sister had troubles with her son, and wishes she'd fought harder. I had ADHD troubles with mine. No two are alike, but the system wants to put them in a category. You are right, you are the only one who Really Knows. Prayers for all of you
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