Special Exposure Wednesday

The boy's growing up...and up....and up! Ashley is even starting to like him more since he is getting bigger!

Things They Say

First, I apologize for the language in the title of this video. But, the content is so very true. I especially like the one, "Oh, it's totally accessible. There's only one step."

What's The Answer?

I was intially very excited when Ashley came home with a packet of information from our state agency, the Department for the Blind and Vision Impaired. It was an invitation for Ashley to attend a 4 week summer program called LIFE. LIFE stands for Learning Independence, Feeling Empowered.

The brochure said the program was to help students who are blind make the transition from high school to work or futher education. Experience would be provided in how to obtain and keep employment, how to navigate the world as a blind person, and provide opportunities for socialization and group interaction. Sounds great, eh?

Well it did until I started reading the list of qualifications. The one that concerned me the most stated that a student should..."be able to perform self-care activities with minimal supervision."

Ashley is deafblind, not just blind. She has medical issues, specifically seizures which can occur anytime day or night. Because of that, she must have someone very close by at all times. And, she must be monitored at night for seizures. The LIFE program would not provide that kind of support.

This is an issue that I have also faced with Ronnie. There do not seem to be programs that support people, especially young people, who have both a sensory disability and a physical disability/medical issues.

I have never been successful finding a camp for Ronnie. I can find Deaf camps and they aren't accessible for wheelchairs. I can find accessible camps and they can't provide a fulltime interpreter. So he has never gone to camp.

Now I am facing the same thing with Ashley. If she were just blind, she would be welcomed at project LIFE. But because she has significan medical issues which must be attended to, she cannot.

What's the answer...?

Brilliant!

One of the most difficult tasks that faces me as a single parent of children with severe disabilities is grocery shopping. I either have to push a grocery cart and a wheelchair at the same time, and trust me, I'm not very handy with that, or I have to find someone to stay at home with my children while I go to the store. But I stumbled across Carolinescart.com and immediately saw the solution to my shopping dilemma!

Caroline’s Cart is a shopping cart created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart. Check out this video:

Missing Mr. Ralph

While my two oldest boys, Chip and Corey, were in high school, they had the same bus and same bus driver for all four years. The bus was on time 99% of the time, both for the pickup and dropoff in the afternoon.

For my two youngest children, Ashley and Ronnie, they are lucky if they have only four different bus drivers and busses each school year. There is no consistency from year to year, often from month to month, and that makes it really difficult for both the drivers and aides who need to know my children and the effect of their disabilities, as well as for my children, both of whom do best with a consistent routine. And having the bus arrive on time??? Almost never.

But I finally got lucky with Ashley’s transportation last November. After complaining about the greatly inconsistent schedules of her assigned bus, schedule problems which kept me from ever getting to work on time, Ashley was assigned a new bus and lo and behold, it was a bus driver that she knew!

Mr. Ralph was Ashley’s driver last year for some of the year. He understands her, and often comes up with great ideas on how to make the ride to school less stressful for her. He is always on time which means I make it to work on time. So everything was going great…..until Tuesday of this week.

Twenty five minutes after the allotted pickup time, Ashley’s bus finally shows up with a different driver. As Ashley starts back to her seat, I begin asking the driver to at least radio his dispatcher if he is going to be that late in the future and the dispatcher can call me. Tuesday morning we waiting outside in the sub-freezing temperatures for 30 minutes. The driver immediately went into defensive mode saying he was just a substitute driver. I asked again for a call to the dispatcher in the future, and he just rolled his eyes and turned away.

Wednesday morning the bus was only 10 minutes late, and yet another new driver was in charge. At least she said that she had radioed dispatch, but dispatch never called me. The driver seemed nice enough, but I asked when Mr. Ralph would be back. She said he wasn’t coming back because he had been transferred to another bus.

Deep and heavy sigh…..

Of course, when things are working well, let’s just mix them up again. That seems to be my school district’s philosophy. I completely understand that running transportation for a school district as large as mine is not an easy job. But it is a job that I assume the folks in the department are trained to do. Does it really have to be as difficult as it seems to be?

And why is it always the special education students who have to put up with the most changes? Special education students who do best when life is predictable and routine? Why can’t the bus transportation for my children receiving special education students be as good as it is for regular education students? Maybe, School District, you should try switching the managers of those two departments and see if it makes a difference….

Special Exposure Wednesday

Every year in late winter, I cut some branches from my forsythia bushes and bring them indoors. For a week or so they look like just dead branches stuck in a vase. But once they start to bloom, I get the first taste of Spring long before Spring even comes knocking at the door!

Pass The Painkillers Please

I've only had a migraine maybe half a dozen times in my life, but boy when I do....Monday was one of those days. And unfortunately for me, it was also a day that schools were closed.

As most parents of children with severe disabilities know, life doesn't get put on hold just because we get sick. I've often wondered which was harder - (1) when my children are sick, (2) when I am sick, or (3) when we all are sick. And the answer, at least for me is (2), when I am sick. The kids are still their normal unique, needy selves but my reserves are pretty much depleted.

So I took a ton of ibuprofen,which I am not supposed to do because I am allergic to it, but it is the only thing that will even begin to dull the migraine pain. The headaches have been so infrequent that going to a doctor to get prescription meds seems like overkill. Fortunately the ibuprofen helped a bit, and once the kids were in bed and tended to, I headed to bed myself...

So how about you? What are your strategies for getting through the sick times and still taking care of your children's needs?