I Am an Advocate!

As a parent of a child with a disability, I have had to learn a whole new language. Because every child has different abilities, I feel like sometimes I’m the only one speaking the language.

Imagine that you have to learn this new language. In your quest to master it, you study 300 different language textbooks giving you vital information as well as web sites/references/links to more vital information. You begin your journey thinking that one day you will pass the exam and know all the words and phrases you need to raise your child. Just when you think you have a handle on everything, you figure out there are several problems:  the language vocabulary/rules keep changing, the lessons get harder and harder, and there’s never a final exam.

Recently, I attended a meeting of parents of children with disabilities. Most of the attendees had middle school age or older children, and we met to exchange ideas on issues we all share.

At the meeting, parents of older children shared information with younger parents about legal guardianship. Because 18 is the legal age of maturation no matter what, a parent of a person with an intellectual disability has to become the legal guardian.

When I was faced with this task, I was overwhelmed. I had to hire an attorney who specialized in elder law. Then my son was appointed an attorney to represent him. Next, he was examined and evaluated by a physician, a nurse and a mental health counselor. Finally, we went before the judge who ruled that I was fit to be my son’s guardian. Funny thing -- I’d already had 18 years being in charge of his well-being and no one seemed to care.

Another legal issue parents at the meeting brought up was the special-needs trust. We can’t die and simply leave our child money. We have to set up a special-needs trust to oversee his money and make sure it’s used for certain items he will use in the future. Otherwise, our children would lose all of their benefits granted by the government which include Medicaid and social security.

An imminent concern with everyone, parent or not, is what happens to this aging population when they finish public school. With better medical treatment, people have longer life expectancy, which is great. But what happens to our adults? If they can’t handle a job, do they just sit at home and let their world get smaller and smaller? There is a huge need for more adult day programs where these adults can interact with their peers and role models. In Tallahassee, most of the existing places are at capacity and can’t take more clients.

I don’t consider myself a really smart person, but I’m lucky that over my son’s 28 years, I have been able to figure out most of this new language, but it’s not been an easy program of study. I’ve made mistakes and made many people angry in my insistence of getting what’s best for my son. When he was younger, I remember going up against some state agency to get them to do something for him. I told my son’s school principal about the situation and apologized for being such a bitch. Her response is something I’ll never forget. She said, “You are not a bitch. You are an advocate.”

These parents who met recently are great advocates who are still on their quest to learn this very difficult language and are also eager to tutor those coming after us. We aren't going away.

"Things that Make You Go Hmmm"

Things that Make You Go Hmmm

This song from the early 1990s by C+C Music Factory came to mind this week. I had a couple of experiences that were sort of like someone had been pulling the wool over my eyes for a long time. Now they were showing me exactly how things in my life are or could be. I’m not so sure I like all of this clarity.

In the song, the singer has several experiences that make him question the results of some action. For example, he tells in one verse how he let his best friend move in with him. The singer’s wife becomes pregnant and when the baby is born, it looks a lot like the best friend. That’s what makes him go hmmm. 

My hmmm experiences weren’t as racy as the singer's were.

This week, I accompanied someone to physical therapy. I’m not talking about the physical therapy most people think of when they hear the words. There were no sharp-looking athletes with torn rotator cuffs, no tennis stars with tennis elbow, no soccer players with a torn meniscus. No, 80% of the people in this rehab facility were senior citizens. Many were attached to wheelchairs, walkers or canes. Most had helpers with them to help them even get to and from the rehab center.

I sat there all smug, thinking that I won’t be one of those people. After all, I was somewhat young and pretty active, but was that enough?  The therapist said that as most people get older, they tend to make their movements smaller because they are worried about falling or hurting themselves. Those smaller movements are actually more dangerous because our bodies are designed to walk at a certain gait and to reach and stretch in all different directions.

I thought about my actions lately. I do stop and consider the results of standing on a ladder or chair or of moving too quickly in the wrong direction. I always thought that I was being careful because I have so many people depending on me; I can’t afford to be sick or hurt. However, maybe my actions are because I’m actually older and more aware of my aches and pains.

My second hmmm event happened when I went to my bridge class. Yes, my bridge class. Before I retired, I said I was going to learn to play bridge because that’s something that retired people do. Playing it is supposed to keep the mind sharp. It must work because I know a lot of older bridge players and can count on one hand the number of younger people I know who play.

During the class, I looked at all of the people sitting around me, some of whom had about 20+ years on me. I thought, “Do I look like that?” “Am I really old?”

For the past 35 years, I have been around teenagers all day. Their antics kept me knowledgeable about trending events, about new music or about just popular culture in general. Now I’m around people on the opposite end of the age spectrum. They talk about what’s happening in the news, the prices of gas and groceries, doctor visits and their aches and pains.

I’m adjusting to lots of life changes now. Without work, I have time to notice others and listen to them more. I have the extra time to think about and act on my hmmm moments. I came home from physical therapy and turned on a yoga program on TV and even did a couple of sun salutations and forward bends. It felt good just doing that much. Tomorrow I’ll add a few more moves. In a month or two, I’ll be posting pictures of me standing on my head.

This week, I realized that I’ve got to get my body moving and stretching while also strengthening my mind. Somehow, I rather quickly became one of the older folks.

(Note: Here's a link to the song's video if you are interested:  C+C Music Factory)

Sometimes I Just SMH*!

I’ve lived through a bunch of years (57) and have been in a classroom with outrageous teenagers for over half my life (35), so I didn’t think I could be shocked by much anymore. I’ve had and observed many shocking experiences just by being alive and in the line of work I was in; however, now that I have time to sit and think about events, I tend to have that jaw-dropping feeling more often. Some of the recent events follow:

Shocker #1

The Presidential candidates – How is it that in the “greatest country in the world,” the really strange people run for president? Is it scary to you or am I just too old or maybe too liberal? I look at the list of candidates and can’t believe that people would actually vote for some of these people. When I voiced my opinion about Donald Trump to my mom, she said that Trump was another George Wallace. People of her generation were impressed with how forceful Wallace was in his bids for the Alabama governorship and presidency, but people in my generation remember Wallace for his fanaticism about race. Voters in the present generation only remember Wallace from the small clip in the movie Forrest Gump. 

In this country, anyone can run for political office if she/he meets the qualifications, and that’s great! However, when I think of Trump as President, all I can visualize is his possible meeting with Kim Jong-un for a nuclear peace agreement. Trump starts his normal ranting and raving and then simply walks out of the meeting. He reminds me of little kids on the playground who get mad at their friends and stomp off while saying, “I’m taking my toys and going home!”

Shocker #2

The cost of cancer treatment in America – A few months ago, my husband went through a series of radiation and chemotherapy treatments for a cancerous area in his lung. That’s all over and done, but now the benefit statements from the insurance company have shown up in the mail over the last couple of weeks. He doesn’t even open them to see how much his medical treatments cost because he has two insurance policies that cover everything. I always open them just to see how much these medical charges total. Having never paid for cancer treatment, I must tell you that I was totally shocked at the amounts.

My husband had 38 radiation sessions. Each treatment lasted about 10 minutes. The cost of each treatment was $2,530.80 for a grand total of $96,170.40. The cost of one of his four chemotherapy treatments was $15,732.81 for a total of $62,931.24. These costs do not include doctors’ fees or any pharmaceutical supplies.

I’ve written about the costs of medical care in this “greatest country in the world” in an earlier post, but I’m still shocked that these charges are so much. How does a family with no insurance pay bills like this? I’m not talking about the poor people who are fortunate enough to have Medicaid. I’m talking about the middle-class family who can’t afford insurance or who has the minimum policy required now.

This post isn’t supporting one Presidential candidate or political party over another (but I’m a Democrat who has only once voted for a Republican because he was my former student and I didn’t vote for him for re-election). As Americans we have the right to choose whomever we want. I just hope, like many generations before me have hoped, that the voters study the platform of the candidate and don’t vote according to theatrical actions they see in the media. This election may be real life, but it’s not reality TV.

When deciding your candidate, check out what he/she has planned for healthcare. The older you get, the more important it will be to you. 

(*SMH -- Shake My Head)