I am really sick and tired hearing about all these wealthy people who have "CURED" their autistic child. I mean seriously, this is not a "curable" disability. Ok so they can afford full time Behavioral Assistants and Nanny's and Therapists and anything else they can buy to help their child. What about the rest of us who struggle every day to figure out how to work full time and get home before our special children get off the bus from school because we can't afford to have full time help. There are no afterschool programs for these special children within 50 miles and I live in a Central NJ, not exactly in the middle of no where.
So am I lucky to live in New Jersey? Here there are certain services that the state will provide to a special needs child here. Do you have any clue what you have to go through to get these services? Then there is the DDD, another agency who is suppose to help our special children, you not only have to fill out a book to start the process of intake but then you have to gather documentation from every doctor, school, test, person your child has every had contact with while at the same time proving they are a real person with birth certificates, passports and social security cards. Yes all this while trying to raise a special needs child alone, work full time and be there when the bus arrives from school with a smile on your face prepared to deal with a child who asks over and over again the same questions?
My Not Otherwise Specified child is enthralled with numbers, time, age, etc. He spends his day counting and trying to figure out how this number relates to that number. Most of the time he already knows the answer to his questions so why does he keep asking them over and over again? Why can't I be a "rich" person who can afford to have the full time help this child needs so he can also be "cured".
Tuesday, December 2, 2008
Monday, December 1, 2008
Day 15 - A long weekend and a crappy therapist
Wow, Happy Thanksgiving to all. I am thankful for so much but most of all that my little guy is able to be home with me and doing better. Every day is a challenge but with the love and help of my family and friends I am getting through it.
Now on to the crappy "therapist" that showed up at our house on Wednesday. This guy walks in with his coffee in a container and asks me to heat it for him. No problem, heat the coffee and give it to him. We sit down and then in comes Timmy off the bus. He takes one look at this guy and regresses 4 years. He goes into a meltdown for about an hour while this guy tells me this is all because he is spoiled. It has nothing at all to do with him being on the Autism Spectrum and when my little guy finally is calm enough to sit with us one of the first things he says to him is "You're spoiled, aren't you?"
This is a person who is suppose to be there providing therapy to us as a family and helping to give Timmy the tools he needs to deal with his disability. Here is what I learned while the "therapist" was at my home:
1) Timmy is spoiled
2) Timmy doesn't need the amount of therapy the hospital determined he needed after a six week stay.
3) The "therapist" doesn't need to do any therapy with us or provide any help or suggestions on what I can do to make our lives better for the upcoming long weekend
4) The "therapist" has no clue when there will be a behavioral analyst assigned to us because 10 hours to way too many hours and they aren't babysitters. This in spite of the fact that the hospital recommended 20-25 hours a week.
5) The "therapist" will not be back to provide "Therapy" for us until 12/10/2008 which will be for 1-1/2 hours not the 4 hours weekly recommended by the hospital upon Timmy's discharge
6) The "therapist" will be Timmy's best friend in 3 months even though Timmy immediately melted down the minute he saw him in the house and didn't connect with him on any level
7) The "therapist" is more interested in telling me how wonderful he is than offering any type of therapy to us.
8) The "therapist" did not read anything about Timmy's history before he walked in the door.
9) The "therapist" wanted to know why I didn't put him in a group home instead of bringing him home
Ok breathe deep, smile and make the call to make sure this is not the "THERAPIST" we will be dealing with in the future. It's all about being the advocate and not letting the system run us over.
New favorite website Ideeli
Now on to the crappy "therapist" that showed up at our house on Wednesday. This guy walks in with his coffee in a container and asks me to heat it for him. No problem, heat the coffee and give it to him. We sit down and then in comes Timmy off the bus. He takes one look at this guy and regresses 4 years. He goes into a meltdown for about an hour while this guy tells me this is all because he is spoiled. It has nothing at all to do with him being on the Autism Spectrum and when my little guy finally is calm enough to sit with us one of the first things he says to him is "You're spoiled, aren't you?"
This is a person who is suppose to be there providing therapy to us as a family and helping to give Timmy the tools he needs to deal with his disability. Here is what I learned while the "therapist" was at my home:
1) Timmy is spoiled
2) Timmy doesn't need the amount of therapy the hospital determined he needed after a six week stay.
3) The "therapist" doesn't need to do any therapy with us or provide any help or suggestions on what I can do to make our lives better for the upcoming long weekend
4) The "therapist" has no clue when there will be a behavioral analyst assigned to us because 10 hours to way too many hours and they aren't babysitters. This in spite of the fact that the hospital recommended 20-25 hours a week.
5) The "therapist" will not be back to provide "Therapy" for us until 12/10/2008 which will be for 1-1/2 hours not the 4 hours weekly recommended by the hospital upon Timmy's discharge
6) The "therapist" will be Timmy's best friend in 3 months even though Timmy immediately melted down the minute he saw him in the house and didn't connect with him on any level
7) The "therapist" is more interested in telling me how wonderful he is than offering any type of therapy to us.
8) The "therapist" did not read anything about Timmy's history before he walked in the door.
9) The "therapist" wanted to know why I didn't put him in a group home instead of bringing him home
Ok breathe deep, smile and make the call to make sure this is not the "THERAPIST" we will be dealing with in the future. It's all about being the advocate and not letting the system run us over.
New favorite website Ideeli
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