The Road to Independence

It's a long and winding road....."Beatles"

I have a secret.  Everyone thinks that I'm such a great parent raising my daughter with cerebral palsy to be as independent as possible.  Well, in this case, great parent means selfish.  There are a lot of selfish reasons that I want Kay to be independent.  I want the child-free life that my friends with typical kids (kids who can feed, toilet and dress themselves) are experiencing in their 50's.  I want an empty nest and time to have that second career or travel and rediscover my relationship with my husband.  There I said it and I'm glad!  There is another song out there with the line, "when is it my time to decide?"  

So, who exactly is on that road to independence?  Kay or me?  

In state or out of state, that is the question....

Dilemma, does Kay go out of state to one of the four colleges in the country that specializes in accommodating people with significant disabilities or does she stay local, we work with her existing network of support to put together the services she needs and I am the back up plan?  If she stays local, she would be able to continue to work at her job, participate in the groups that she is involved with, and I can easily monitor things (I know, helicopter mom).  The college would have one on one aides, feeding aides and even a wheelchair report facility.  The closest school is in Pennsylvania.  Guess I need to get out my atlas and see exactly how far away Pennsylvania is! 

ACT Versus SAT

Getting ready to schedule Kay for those infamous standardized college admittance tests. As you recall, Kay was not able to take the PSAT last year because the ball got dropped in applying to College Board for accommodations. I'm not pointing any fingers and I also had mixed feelings about it. I hate to subject Kay to testing that really doesn't count for anything. So, she took the day off from school and chilled. We didn't get the accommodations letter until almost Christmas. The lesson here is, if you want your kid to take the PSAT and need accommodations, you need to start early in their freshman year.

Now, about the tests. We have decided to take the ACT's versus the SAT's. The rationale is that colleges accept either one. In fact, I think they are favoring the ACT right now. Secondly, the testing schedule isn't as rigid as the SAT's would be. For the SAT's, Kay would have to take the test the Monday and Tuesday following the Saturday dates that it's offered to the general population. There is two sections to the SAT's so she would take one one day, and the other the next. The math portion is what she is going to need an inordinate amount of time to take. The ACT's give you a "testing window" in which to complete the 4 sections. We will be able to schedule it on days that she doesn't have school and having it broken into 4 sections will make it easier also. Another interesting thing I learned is that the testing company will pay Kay's school aide to scribe for the test. I had wondered how that would work.

Another side note. Honors Pre-Calc is really tough. Not so much the material, but the pace. Kay had to have emergency surgery on her foot and a week later she is still behind one test and two quizzes. Seriously hope that she doesn't want to take Calculus next year. I may shoot myself!

The End of Sophomore Year

Well, it's done. Over. I always have mixed emotions. I realize that time is going by so quickly and that I will yearn for these days again. Glad to be rid of the 5:45 a.m. mornings and car ride in the dark. Also, the schedule of appointments and activities that follow the school year. Kay got straight "A"'s in all her classes. She did screw up the 10th grade writing assessment and only got a "2". This is the kid that has published two books and writes better than her brother who's a Junior in college. When I asked her about it, she told me that she didn't like the prompt so she wrote about something important to her---Civil Rights and the Disability Movement. I'm proud of her "2". She only gets one score versus "typical" kids get 2, one for content and another for conventions. Since she dictates to scribe she doesn't get a conventions grade. I hate standardized tests. Only 10 weeks until Junior year. I'm sleeping in tomorrow....at least until 7:00 a.m.

What to Say....And Not Say

Someone asked me today about what to say to a friend whose child was born with a disability. I told her not to say any cliches. I remember how painful it was to hear, "These things happen for a reason," or "Only special parents are given special children, " or my favorite, "You only get what you can handle." I was oh so not handling things that it made me want to scream. I told her that I liked when someone would tell me how outrageously long and full her hair was (Kay got her first haircut at about 6 weeks old.) or how long her fingers were....."normal" stuff. As a parent with a child with a disability, I have the ability and credibility to tell other mothers in this situation, "It's going to be OK." You wouldn't believe the relief you feel when someone tells you that. More than anything, just listen. People process trauma by talking about it and a sympathetic listener is the best friend.

Time for Thank Yous....Make the Time

As the school year draws to a close, it's time to take a few minutes and thank some people at your child's school. Surely someone there has made the school year at least bearable. I've already picked up some 99 cent thank you cards at Walmart and will write a heartfelt thank you to each of her teachers. There are only 4 so I'm not killing myself here. If you don't want to be original, google famous quotes for teachers and just write the quote in the card and sign it sincerely. My gardenia bush is in bloom, if I really go crazy, I'll send in a blossom with the card. One of Kay's early teachers told me that she has saved my card all these years. Can't say that about the tacky coffee mug shaped like an apple!

First Step First or Day Late and Dollar Short

PSAT's are administered in October of a kid's sophomore year. Before school let out Kay's freshman year, I asked what needed to be done to get accommodations for the PSAT. The school test coordinator (an important person to know) needs to request accommodations from the College Board. College Board is the entity that administers both the PSAT and SAT's across the country. Can anyone say M-O-N-O-P-O-L-Y? The accommodations are different than you see on the IEP. Anyway, I followed up after school started in August and found out that someone had dropped the ball. We got the form to College Board and I thought for sure they would have time to process it before PSAT day in October. Nope! The letter of accommodation arrived in December and Kay twiddled her thumbs on the day the PSAT was administered in October. The good news is that the letter is valid for all her SAT testings. I was hoping the PSAT would be "practice" to try out the accommodations because they aren't what she is used to. So, the lesson here is, got a Freshman??? Start your paperwork early.

Kay will be taking the SAT next year. I understand that she will be able to take it at her school, with her aide and a proctor. I better start now!