See What I'm Saying

The New York Times describes the movie as "Complex, candid and all-but essential viewing for hearing audiences, Hilari Scarl's intrepid debut feature, 'See What I'm Saying: The Deaf Entertainers Documentary,' educates without lecturing and engages without effort."

Check out the movie trailer:



Everything I've read about the trailer says that it just doesn't do justice to the movie. I explored a little more and found these Hulu interviews with the stars of the movie. The movie is playing selected theaters, and I sincerely hope that it will soon be playing in my city...

Breathe, Just Breathe

I felt like someone had punched me in the gut. It was one of those stop breathing moments - two seconds until telling myself to breathe again.

I knew when I adopted Ronnie that he had a lot of medical issues. Among those issues is kidney disease. He takes a handful of medications three times a day which supplement the job that his kidneys should be doing for his body. I had even heard from his foster mother that his last visit with the nephrologist in their town went well - that Ronnie was improving and probably would continue to improve.

Yet on Wednesday, the nephrologist here in my town - a highly respected and very experienced man - said that Ronnie was holding his own, but that medicine was not going to be a lifetime solution. He said that the future held dialysis and/or a kidney transplant.

Ronnie's world and mine took on a whole new dimension with those words. We've got to continue to work hard to keep him healthy, to do everything all the doctor's tell us, to be aggressive with treatment options, and through it all and most importantly, we've got to keep positive attitudes.

But I'm putting you all on notice right now, if my beautiful boy needs a kidney transplant, I will be asking each and every one of you to consider donating.

Special Exposure Wednesday

What better way to countdown the days to the release of the Iron Man 2 movie than in Slurpees in Iron Man 2 cups. The movie better get here soon or the boys will need a trip to the dentist!




Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Trying To Keep Dry

Ronnie needs an umbrella for his wheelchair. When we were waiting for the school bus last week when it was raining, he had a tough time staying dry. Both Chip and I had umbrellas - one we were holding over Ashley, and a really big one we were holding over Ronnie. But, his pants and shoes still got pretty wet.

So, I've begun my search for an umbrella and holder that can be attached to his wheelchair, but so far I'm not finding much.

I googled 'wheelchair umbrella', got lots of hits, and almost all of them were for this:



But this was a very specific warning that the product contained latex and was not appropriate for people with latex allergies (Ronnie). And, they weren't cheap. this particular model ranged from $30-$60.

So I tried another angle. I searched for 'golf bag umbrella holder', and found this:



It looks like it could hold any umbrella, and it looks pretty well made (at least in the picture). The lowest price I could find for it was $16.

I'm going to try to find a golf store in town and see if they have the holder. But I wondered if any of you had figured out the umbrella/wheelchair thing. If so, what was your solution?

Ronald, Meet Ronald

Saturday we all attended the 2010 Connections Resource Fair at our local Children's Museum. Connections is all about resources - healthcare resources, camps, therapy, intensive behavioral supports, assistance animals, insurance - you name it, and it was probably there.

Started several years ago as a small operation to link families of children with special needs to community resources, it has grown exponentially, and this year was the most well attended ever. So well attended, in fact, that I believe they may have to consider larger venues for future events.

Besides being a great place to learn about resources, it's also wonderful to see all the other families and children. It's almost like a huge support group meeting!

The highlights for us this year were talking to some folks about new video phone technology, Victory Game athletic events, Miracle League baseball, hearing dog programs, and our all-time favorite therapeutic horseback riding. And, we had a wonderful interpreter who stayed with us the whole time we were there! Here are a few pictures to give you a glimpse into the fun:



Ashley was fascinated by the horse's hooves...



And Ronald liked how strong the horse's muscles were.



'Milking' the fake cow was fun!



But nothing topped Ronald meeting Ronald!

Is There a Right Answer?

I'm curious to know how others feel about this.

Abbie Dorn always wanted children, and in June 2006 she got her wish -- triplets. But during a difficult birth she suffered severe brain damage that took away her chance to raise them.

Now, her parents and former husband are locked in a legal battle over whether Dorn is capable of interacting with her children, and whether they should visit her.

The full text of the article can be found here.

Should Abbie be able to visit with her children? Would it be too traumatic for them? If not now, when should they be allowed to visit? Do you feel her husband is being cruel, or are her parents being unrealistic?

Whatever else you may feel, I think we can all agree that what happened to Abbie during her delivery is very sad...

Doing Your Job

Last December, Jessica and I met with our state’s Department of Rehabilitative Services. That agency, DRS, is responsible for helping people with disabilities find employment. Of course, the person has to be found eligible first before DRS will assist.

Our first meeting didn’t go so well. The ‘counselor’ who scheduled our meeting seemed annoyed from the beginning of the meeting. I’m not sure why. Although the meeting was about Jessica, the counselor would only talk to Jessica through me. At one point, he claimed to have a difficult time understanding what she said. I told him that if he would look at her when she was talking, more than likely he would be able to understand her.

The counselor also gave us the impression that he didn’t feel Jessica was capable of being employed. He talked down to her (again through me) with statements like, “you know, you will have to get up to an alarm clock to get to your job on time.” And, “Do you think you can handle using public transportation?" These rude (in my opinion) questions were all posed before the gentleman even got to know Jessica.

The meeting ended when the counselor said he would contact Jessica’s school and our county’s agency that provides case management for people with intellectual disabilities. He told me he would let me know if Jessica was eligible for DRS’s help.

Like I said, that was in December. By March, I still had heard nothing. My calls to DRS went unanswered, and Jessica, now 19 years old, still had no plans for preparing for future employment. So, I contacted our state’s protection and advocacy organization. They agreed to represent Jessica and immediately began requesting records from DRS.

DRS said, “of course we found her eligible”, but of course, they hadn’t notified anyone. They were unable to produce records that showed she was eligible, and in fact could produce no records at all. So the attorney from the protection and advocacy agency and I met with DRS today – the original counselor and his supervisor.

The DRS folks were nice as could be today. They apologized. They made plans to do an employment situational assessment. They agreed to contact the school and the county case manager. In short, they agreed to do everything they should have done last December. I’m convinced that things changed because the attorney accompanied me to the meeting.

Why does it have to be this way? There have been way too many times that the only way I could get the attention of someone or some organization was to contact an attorney. The sole function of DRS is to help people with disabilities get jobs. Why did it take threatened legal action to make them do what they are tasked with doing?

Things really do not need to be this difficult.