Alternatives

Should a person in a power wheelchair go for cervical surgery? I can't imagine I would not suddenly have neck pain, headaches, and communication problems (in addition to other things). I think I should at least try some holistic approaches first. This is just too risky and I'll not be able to reverse this mess- just go on a surgery spree. There are many good anti- inflammatory foods so I will try them for awhile- cherries, salmon, salad, grain fed beef, olive oils, cinnamon, cumin, broccoli, cauliflower, green tea. I know the physical therapies are really not the answer. A lot can be said for positivity and perseverance too. If a person is disabled anyway the base line is totally different- no one really understands if they don't live it.

Plan B

"Making my mess my message" is the best way to go so that's how I'll look at the flip side of my spinal stenosis. I will be going for continual therapy so I will share my pamphlet on "The Tenacity of Hope." I won't be a stranger entering but rather a consumer who will need to follow the advice I write about. Also I'm going to have a real website to showcase 3 areas: "Vocational Venues" and "Disability Dialogue" Just like my biz cards claim. Eventually I will find someone to be the front person and give speeches so I can do what I do better- plan things. I'll also focus on Team River Runner and get others interested in a bike tour to increase awareness of disabled veterans. I am already excited about this- I just wish it didn't involve some personal scary surgery.

Possessive Parents

My arthrogrypois lead to scoliosis now to spinal stenosis and a sudden operation. I know I will be able to handle it but what I'll have trouble handling is my parents taking over my life. I fought so hard for independence but when parents see their adult child as a 'helpless handicap' it makes recovery so much more difficult. Attitude is more than 1/2 the battle and can make the entire thing worse. That also makes empowerment of people with disability difficult, then the child remains a child and the life quality is limited. I need to find a half - way point, perhaps I recruit others to intervene. Then I can take the personal lesson that I learn and use it to help others. I'll make it into a case study for future reference.

Compliments & Complaints

If I believe someone has done a good job I will write them a formal compliment. On the other hand if I am suffering from someone's negligence I believe at the very least they should hear about my struggle because of their negligence. I hate being underestimated. When it comes to my wheelchair I continue to suffer and now it had become a pretty serious medical issue. The man from DME clearly did not care that he did not specify the chair I needed. He told me more than once I'd get the exact same chair because otherwise Medicare would not send anything. He did not even bother measuring the floor to seat height needed. When the incorrect model came he pretended to be concerned and had his servicemen try to lower it 3 times. When it was still too high he canceled his service to me and feigned "the problem was due to his company's denial of my insurance and an environmental change that made prior measurements inaccurate." I replied with "you and I both know the problem began the day I got the chair." He quickly refused to deal with me any longer. Since I still don't have a correctly fitting cushion and neuropathy on my entire left side it's time to contact his boss.

PA Waiting List

I have been interested in the housing issue ever since I read the 2 grant topics through the PA Developmental Disabilities Council. I then listened to a professional who used to work on that issue at the state level. Now I have a much better grasp of the knowledge needed. The "Why" always boggled my mind (How can there be 13,900 desperate people?). I just got another notice about writing and visiting legislators about the issue. I am a good writer so I wrote to someone and offered to transcribe people's stories and send them to the right people. This idea sounded good- it surely couldn't hurt. Now I'll see if my suspicions are confirmed; I surmised that these parents just didn't think ahead and most are overwhelmed.

vocational venues for veterans

That title even sounds like it goes together. I have a new way to help veterans and the 13,900+ people on the PA Waiting List. I met a number of employers seeking to hire veterans. I went to the Veterans Expo and saw so few people. I know a few professionals who run programs and offer vocational and residential services so I will contact them. I will also follow-up with the employers who I met to put them in touch with each other so perhaps this will result in some qualified people getting jobs. I am joining a canoe club where there will be many more younger people who will hopefully be interested. I also want to start a pets 4 vets program. Since one replied and I met a girl who knows how to do it (now I just have to find her)I have a starting point.

Pets 4 vets

I found my charity and it's on the Marine Corps Birthday- how perfect is that! They are a nationally known 501C3 so they would qualify for the grant from the Developmental Disability Planning Council. I went there is person for that so now I know why I did what I did. Hopefully the person in charge will contact me later today and we can get started. I had in the back of my mind that there was something I could collaborate with, that would need my help as much as I would need theirs. Life does come together but it takes a lot of time for that to happen. Now, I can probably share my "Tenacity of Hope" booklet and get moving on Infobility too.

Hope for the future

In a way today shows that inclusion is possible and meaningful. If we can elect a president who was never had political experience we can hire people with disabilities who have not had much job experience. Sometimes it is important to get new perspectives and a person who may,on paper, look like they can't succeed but in real life that message doesn't always prove true. History shows many people who were successful in spite of their handicaps which may not be because of their minds, bodies,or behaviors. Furthermore it is true that just because a person acts inappropriately one time, the assumptions should not be made that (s)he will perform that way. Many people were horrified by the way he depicted a reporter who had a disability; that can't be considered insight to his character. Just because a person did not want help opening a door, that does not mean that the person doing the asking should decide to never offer that assistance again. There really are similarities.

Futures Planning

This is a new concept for most people, especially parents of kids with intellectual disability. I joked that it's not rocket science; after a few hours of reading and summarizing it isn't. I'd like to work on it with the lawyer who was interested in collaborating on programs. She had the program planned and was going to write to support groups but never contacted me about this. I always talk about taking a different angle in my approach- this is it. I hope that I can make some things happen for parents. It looks complex but doesn't have to be. I want to then refer parents to programs like "Visions for equality" in order to learn more. It would be a good thing for people to understand. It's mainly about families and friends planning a quality life for those kids who usually get stuck in the system. There are many charts, and colorful maps but it is just about thinking ahead, thinking outside the box, and getting natural community supports involved in the process.

Home Depot

The representative did not attend the panel so I called and asked the problem. She quickly stated that her schedule changed. I was unhappy that she could not be bothered alerting me about it. I wrote a nice letter to the site manager about her absence and asked to show the DVD on communicating with people with disabilities. I am having second thoughts about showing it but it's already written so maybe I'll share it. The other location has kids and that's the perfect venue to something disability related so I will email the manager and as if I may do something to "spread the word." There's no harm in trying, right? There are other ways to increase disability awareness.

Communities That Care

There is always another "door." I was told of a really good groups so I decided to learn more. There is a Non-profit who works to engage kids thus decrease depression. Also there is a component that includes kids with autism in which I was especially interested. The problem - not a new one) is that they have no money to train parents in that category. I decided I could be helpful. I know companies through Society of Human Resource Management that may have an interest in learning about this program. I will spend the day finding companies who are members of SHRM who may be interested. I will also create a bit of an explanation to offer companies. Hopefully my efforts will pay off- literally.

An idea

I have to be part of a larger company.... or store. There's a gift/gallery shop run buy a lady who has Multiple Sclerosis. I wonder if she'd display my flyers? She seems to be the perfect person, she has a store, she has a disability, her proceeds go for charities, and I'm sure my program would fit in with the others but not duplicate anything. I will stop by and ask if she'd consider displaying my information- it could not hurt. I will also visit the restaurant who was interested in Infobility at one time. This needs to take a different approach and it needs to be done individually.