Friday, June 29, 2012
Just a little bit of difference
Yesterday was my birthday. Everyone asked me if I was going to do something special. or if I wanted to do something special. I had some time to think about it. What does special mean? I guess, in my situation, special would mean something different. Different than my usual day, which looks something like what the dad and brother go through in the movie, 50 First Dates. Have you seen that movie? That's the movie with Drew Barrymore and Adam Sandler, where Drew's character had been in a car accident and she sustained a brain injury which impaired her short term memory. So everyday, she wakes up and thinks it's the day before her accident. She has no memory after that date. Which means she always thinks it's the same day every day. So every evening, after her character, Lucy,goes to bed, the dad and brother prepare the house so that Lucy will see everything is exactly the same. Anyway, you get my drift, I hope. Back to me. So that is what my life basically looks like. It's not exactly the same every day, but the week does follow a rather specific routine. And with Blake, there are definitely some routines that we follow very specifically every day. Blake has a visual board that illustrates, in photos, what his day will be like. And he diligently checks it every night before he goes to bed. He knows that most weekdays, he goes to school. I take him by car (there's a photo of my car), and he comes home by bus. He knows if it's Tuesday, it must be bowling in the afternoon. Thursday is basketball, and swimming on Saturday mornings. He knows his morning routine as well as his evening regime. He jumps for joy when I take out all the products and items that we use before bedtime, and even is happy when he takes his medicines, which are given on a precise schedule. As long as we are following exactly what he is expecting, he is very happy. Because of Blake's strict routines, I also have developed a rather specific schedule of my own to adapt to his life. I don't have a visual schedule, but I do have an iPhone that contains all my appointments. And I have my own set of "If it's Tuesday, it must be..." Oh my goodness. I've become Blake. Stuck in a pattern of routines that also bring a great deal of comfort to my life. I like it. It also brings a smile to my face. Is this bad? I don't know and I don't really care. I'm just appreciative that my husband understands. Actually, he's starting to develop a whole set of routines himself, probably to adapt to mine? So for my birthday, what did I want to do that was special? Did I want to rock the boat and get someone to watch Blake overnight, which would mean that I had to get someone else to take on some of the tasks that I normally do? No-too much energy. I do that on occasion when I travel for work. No-I think a nice dinner out with the other kids would really fit the bill-just different enough to call it special. We are doing it tonight since last night was a work night for the kids (they are all grown). I'm really looking forward to it. One cool thing about having a routine life, is that just a little bit of difference makes it super special. I'm really lucky!
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5 comments:
To Valerie Herskowitz:
Let me repeat here what I wrote four days ago on your June 7, 2012 post:
In my 2 short posts last week, I identified myself as the "father of 40 year-old nonverbal autistic son Ben, who has lived at home with both parents for past 16 years in Israel (but born and mostly educated in Boston, MA USA)" Ben is the oldest of 3 children, so while he is about 20 years older than your 21 year-old son Blake, we his parents are "only" in our mid-60s, about 10 years older than you. I used to be a lawyer in Boston, MA, USA and as a volunteer I still have been helping parents of school-age children with disabilities in the USA so I am fairly current with IDEA.
I will wait for you to bring up specific subjects about adult children with disabilities, but I may be able to offer you some advice in Florida. Blake seems to have about one more year of entitlement under IDEA for FAPE and you mention there are no adult services for Blake in your area. However, IDEA includes Transition Planning as part of the IEP at age 16 which mandates the involvement of adult services. Do you want to discuss what happened to Transition Planning?
Arthur Golden of Jerusalem
Funny, it has often occurred to me that I may be getting autism by osmosis. I have found myself answering people in simple three word sentences, that Evan understands.
Val, you really are super special. I hope you had a nice birthday.
HAHA. It's a compensatory behavior!!
Thanks-it was great!
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