Nick and Isabella started school this past week. Nick is a Junior in High School and Bella is in fourth grade! They both got off to a great start. Nick has said he "loves" his humanities class and thinks it is going to be the "best class he's ever taken". Bella was so excited and loves her teacher. She loves to read and brought her reading book home to show us. She pointed out that it is now "800 pages" now that she is a fourth grader vs. "400 pages" like last year! I have a feeling it will be a great year!
The week before school started, Nick passed his test to get his temps. We are just waiting on the doctor to sign the paper needed due to Nick's disability and when she does, he'll officially have his temps. and be able to practice driving with us. Watch out! We had an evaluation last spring at UT Medical Center (OT, therapy dept.) and it was very extensive. It indicated he would only need one adaptation to drive, not needed but recommended, a ball on his steering wheel, but other than that, he did great.
The day before school started we had someone come to our house from the County Board of DD to do what is called an OEDI, which stands for Ohio Eligibility Determination Instrument, which is the assessment the do in the State of Ohio when an individual turns 16 to determine their eligibility for services from the County Board of Developmental Disabilities (www.odmrdd.state.oh.us/). We have Nick on a waiting list for supported living services for when he gets older and wants to live on his own and we receive family resources services, which is $1000 reimbursement annually for items for Nick. That is in our county, every county is different in the amount they offer and you get a percentage, so we get 50% reimbursement. We've used it to reimburse us for things like hearing aides, which are $5400 a pair and insurance does NOT cover (Nick is on his third pair), his Segway ($6700, not covered by insurance), things like that. It helps. Of course, there are SO MANY things individuals with disabilities and their families have expense-wise that insurance does not cover. I don't think most people realize this until they live it or know someone living it. So, my point is, every bit helps! Anyhow, the OEDI took a couple of hours (2 1/2) and the gentleman from Wood County DD was VERY nice, but Nick and I both felt a little "down" after he left. We both KNOW, are painfully aware, of Nick's challenges, but the assessment focuses on areas of "deficit" to show eligibility for these services, so it focuses on what a person "can't" do, which is the opposite of how we approach things. It focused on mobility, self-care, self-direction, capacity for independent living, learning, receptive/expressive language. Of course, it's just something that has to be done, but it is a bit of a downer! I had to also write letters to Nick's doctors, specialists, therapists, asking for diagnostic records and info. FUN!!!!!!!!!! Anyhow, that is done.
A bit of good news we found out after the OEDI visit, in our county, Nick IS elibible for Special Olympics! I was told when Nick was six and we lived in another county, and I was an employee at the time at the county board of mr/dd, that Nick was NOT eligible for Special Olympics because he did not have a cognitive delay. I asked several times, spoke to several people and got the same answer. So, all of these years, that is what we believed to be the case. Maybe it WAS, and perhaps something has changed, but I spoke with our county this week and was told he IS eligible even though he does not have a cognitive delay, so we just have to fill out the paperwork and we'll see what Nick wants to do. He is waiting to hear what is available. They have different sports each season he can pick from. I always thought it was RIDICULOUS that someone with CP could not participate in Special Olympics if they did not have a cognitive delay. In fact, I was really angry about it for some time. It says, "you are disabled, but not disabled enough!" Just silly if you ask me. Anyhow, that's just my thoughts on it. (www.specialolympics.org)
Next weekend we're off to Maumee Bay State Park for Labor Day weekend. We rented a cabin for the weekend and plan to have a party with family and friends on Saturday to celebrate Nick's 16th and Isabella's 10th birthdays! Should be fun!
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