Friday, August 22, 2014

Summer Done, School Year Begun

Thankfully, we have survived yet another summer. School is back in session in just a few days, and I think both Ronnie and Ashley will be glad to see that day get here.

Ronnie's biggest problem this summer was boredom. Unfortunately, he is not a go-getter type of guy and wants to rely on others to direct his social calendar. Since he is somewhat particular about what is on his social calendar, he also spent a lot of the summer complaining about that. He is a young man that needs to find the motivation that lives within himself, and I am not sure how to help him do that.

Ronnie did participate in a lot of wheelchair sports over the summer, and I know he enjoyed those. He played wheelchair lacrosse, did two sessions of kayaking camp, began training for a half marathon that is coming up this November, and accompanied his brother, Chip, on one of the popular biking events in our city.

Ashley's summer began as usual with ESY services. I know I have said in the past that I wasn't sure we would continue with those, but now I am sure - NO MORE ESY SERVICES! The services are not designed with the individual student in mind, and most importantly the summer staff seems to have no clue how to educate a student with deafblindness. We're done!

In addition to ESY Services, Ashley also started attending a day support program. I had some misgivings in the beginnning, and was really worried because I see day support playing an important role in her future. But despite my early concerns, the day support program turned out to be a very positive experience for her. She is happy and excited to go there every morning, and she comes home in a great mood each afternoon! I also had a tutor that worked with Ashley two days a week at the day support program (since ESY was such a waste), and that combined with the new adventures provided by the day support program have really helped Ashley mature and become more independent this summer.

I believe Ashley is in a good place for starting the new school year, and because of her tutur, I'm betting there was little to no regression as he classes get underway.

So, I am excited for both kids to get back into the regular school year, and I know they are both looking forward to seeing their teachers and other staff at the school. We have indeed survived another summer, and each summer gives me new insight as to what I can do to make sure both Ronnie and Ashley have the support and services they need.

Thursday, August 21, 2014

ASL Happy

For my son, Ronnie...

Wednesday, August 20, 2014

Don't Look Down On Me

While this video is directed at one specific disability, the wisdom of Mr. Novick can be extended to all types of disability.

Thursday, July 31, 2014

Wednesday, July 30, 2014

Aren't You Sorry You Asked?

It's been a rough summer. You could probably tell that based on the lack of posts to this blog. So, here's a quick summary, and a promise to try to start doing better...

Ashley's ESY/summer school ends tomorrow. The best thing about summer school this year? The bus driver. Other than that, I have no idea who Ashley's teacher was, whether or not she had the 1-on-1 signing aide she was supposed to have, what she did, whether she ate lunch, whether she got her medicine every day, etc. etc. There was no contact with a teacher for the entire session, and no progress notes sent home. Needless to say, this will be Ashley's last year attending summer school.

Ashley also started a day support program. She would attend for a few hours in the afternoon Monday through Thursday (summer school days) and all day on Friday. There have been the usual bumps along the way, but Ashley does seem to enjoy her time there. I believe it is a promising place for her to spend next summer.

Ronnie became bored two days after the school year ended and summer began. Chip tries very, very hard to keep Ronnie busy and occupied, but Ronnie isn't holding up his end of the deal. When Chip plans an outing, Ronnie will complain and say he wants to stay home. When they stay home, Ronnie will complain about being bored. This does not bode well for the time after Ronnie graduates from high school. He really needs to take some responsibility for his life and show some motivation, but so far that is not happening. For the moment, I am writing it off as teenaged angst, but I can't do that much longer.

And my health hasn't been good all summer. I don't know exactly where the problem exists, but my rheumatologist can't seem to get my medicines straight. It could be a problem with the pharmacy (it is a specialty pharmacy, you know, those ones where they charge even more outrageous amounts for meds) or with my insurance, but I don't know. If I knew, I could go to battle, but so far no one is sharing any information with me. As a result, my joints are screaming in pain and I am dealing with extreme fatigue. Throw into that mix my job and its accompanying off-the-chart stress level, and all I want to do is sleep.

So those are all my excuses for a rotten summer and the reason I haven't written. Hopefully my next post will be a little more positive...

Tuesday, June 24, 2014