Thanksgiving: Song about Autism

Hi Everyone,

On Thanksgiving, I wanted to thank each of you for being part of our Climbing Every Mountain community.

It’s been an exciting experience to meet new friends and connect with people who care about people with disabilities.

More people are subscribing to the “Get Notice of New Posts” in the upper left hand corner of the website. More people are retweeting and sharing the social media love.

Now, there are over one hundred and twenty articles or posts, hundreds of comments, and visitors from over ten countries. Inch by inch…. I’ve been reposting some of the “evergreen content” but hope to have new articles for the new year.

But sometimes we need to live in the NOW.

The last couple posts have been about dreams for the future (click here), and rants about the past (click here).

So NOW: I want to ask each of you to concentrate on TODAY and the people who bring you joy.

Right Now! Just for today, we accept that everything is just the way it is supposed to be.

Sure, we can begin the climb up the mountain again tomorrow, but for today we can feel good about who we are and the people we love.

This might be considered heresy for an advocate: But there are many wonderful things we don’t need to change.

I am so thankful for my husband Tom, who even though he thinks there are only space aliens on the web, he still loves me. After 46 years he is still my best friend.

I also want to thank my wonderful children and family: Aaron, Tommy, Ana, Isabella and Vivian–I hope I haven’t embarrassed you too much. You do give me amazing memories and stories and teach me what life is all about.

Gift: A Song about Autism

It is hard to always look at “the silver lining,” see “the sunny side” or “the glass half full.” So, on this Thanksgiving Day, give yourself a gift and “listen to the music.”

Through My Eyes is a song about what it feels like to have autism. I thought this was beautiful and hope you will too. Enjoy!

Happy Thanksgiving.

Keep Climbing: Onward and Upward
All my best, Mary

“Disability,” “Handicapped,” Aimee Mullins and survival of the fittest.

Aimee Mullins Rocks

Aimee Mullins at the TED conference


Is that a WOW or What?

TED is for the “thought leaders” of our generation. I’m so glad Aimee Mullins stood up in front of the world and talked about the words we use, the way we tell stories, our prejudices about people with disabilities and our ability to change and influence lives.

I’m thrilled she is beautiful, an accomplished athlete, and can deliver a message with the best communicators in the world. Chalk one up for our side. Aimee you did us proud.

Language

I was really struck by the definitions. Yes, even in 2010 the words “disability” and “handicap” carry such derogatory connotations. Every time I hear the traffic report and they say, “there’s a disabled blocking the west lane” I just cringe.

I recently spent some time looking up the words: “retarded, moron, idiot and imbecile” and their histories (click here for related article).

Aimee talking about the negative effect these labels would have made on her when she was a young child was sobering. (See related article on the difference between handicap and disability.)

I particularly liked Aimee’s references to Darwin. Our ability to adapt, change, and transform determines the “survival of the fittest”.

Inclusion is our “survival of the fittest.”

This is why I believe in inclusion I agree it means the difference between survival and a decent quality of life. (related article).

Inclusion is about adapting, changing and transforming. It is about blending into the normal population the same way animals learn to camouflage themselves into their environments

The medical doctor saying that she was an example of the “X” factor was my takeaway moment.

WE ARE THE X FACTOR.

If you are interested in my take on the differences between the label of “disability” and “handicapped” (click here). I would love to be able to pass this information on to Aimee. Perhaps it might help.

Come Dance With Me: Share your thoughts.

Were there any new ideas? Which of Aimee’s stories did you think were the most powerful? Do you have any stories about Medical or Educational professionals? What message would you want to send to Aimee? To her parents? To the medical professionals? If you had a chance to be a thought leader, what would you talk about?

Keep Climbing: Onward and Upward

All my best, Mary

Dental Visits| Saying AHHHHHH

Say AHHHH

When Aaron was in high school he needed to get his wisdom teeth pulled. Sounds normal, right? You, me and most people get our wisdom teeth pulled.

The difference between you, me, most people and Aaron is Aaron has autism. That makes a huge difference in the choice of dentists, hygienists, insurance…pain, suffering and good oral hygiene. Plus we won’t even talk about people who use Medical cards with Medicare and Medicaid.

Over the years, Aaron has had some great dentists and some not-so-great. Some great hygienists and…hygienists who refused to put their fingers in his mouth. One dentist wouldn’t let Aaron in his waiting room. I’ve written about the retarded teeth” episode.

Like most people I asked my friends for recommendations and was directed to Dr. G. for the wisdom teeth. We stuck.

Fifteen years later Aaron is still going to Dr. G., even though he is a pediatric dentist. The advantage of a pediatric dentist is he does not rely on the patient for any information and works quickly. Dentists and Doctors who work with adults usually ask their patients if they are having any trouble and expect them to participate in examinations. Young children and people with disabilities who don’t use words are a lot alike.

Normalization–Yes; Age-appropriate–No.

Dr. G has a “normal” practice. He works with lots of children and a handful of people with disabilities. While this meets the definition of “normalization” or “social role valorization,” this would not meet the definition of age-appropriate–Aaron is 36 years old.

How the Doctor Visit Works

Last week Aaron had his bi-yearly visit for a check-up and cleaning. Tom, my husband, takes Aaron (I’m too squeamish).

We have learned the best time for an appointment is the last appointment before lunch. This way, there are only a handful of other patients, the waiting room is less chaotic, and if Aaron runs over, there is some flexibility. We also schedule a day when Kathy, the dental hygienist, is working.

Full Circle

Kathy has worked with Aaron for many years but this year, a new hygienist was assisting her. Turns out this new hygienist was one of Dr. G and Kathy’s former patients. She grew up watching Dr. G and Kathy, became a dental assistant and now is working in their office. Full Circle.

Inclusive Dental Care | Autistic Dental Care–NOT!

Kathy used the same techniques she uses with all her patients. The trick is she individualizes the care based on the individual needs of the patient.

Individualized Dental Plan

As Kathy worked she explained what she was doing to Aaron, Tom, and the new assistant—between verses of camp songs! So, “I’m using these cotton squares to absorb the fluid so Aaron doesn’t swallow and gag…Eeeeye, eeeeye, Ohhh. And on his farm he had a cow…”

Kathy and everyone in the office, including the other hygienists, the patients and their parents all sing during the dental cleanings. She’ll be comin’ round the mountain, Wheels on the bus, If you’re happy and you know it…

Aaron loves it. This helps him relax, plus it builds a community among all the people in the room.

This isn’t the dreaded trip to the dentist I had when I was a kid, this is just a trip to the dentist with some fun people. And, the most interesting thing is ALL the other kids and parents love it too. Aaron often makes strange noises, somehow having a familiar song and such an accepting environment makes everything okay.

The amazing results are Kathy gets Aaron’s teeth cleaned thoroughly, she even flosses his teeth.

This is ASTOUNDING!

If you polled a group of 50 school psychologists 100% of them would say flossing Aaron’s teeth was impossible. You see this would NOT fit in any scientific venue. There would not be a big enough sample of patients, there would not be replication or any guarantee this would work in other dental offices. There would not be a lot of people just like Aaron, or like Kathy or Dr. G.. So, scientific methods are not applicable, this is not predictable. It just works.

Other tricks we learned from Dr. G, Kathy and the other people in the dentist’s office:

1. Use a sealer on the teeth. Aaron got his first sealant applied when they first came out over 15 years ago. The sealant has held up. Aaron has had no cavities in all that time.

2. Aaron goes into the hospital and Dr. G does a deep cleaning when needed. In 15 years, Aaron has had this procedure two times. It requires him to be put under, so it is serious.

3. Dr. G especially looks for gum disease at each visit.

4. He does not recommend an electric toothbrush for Aaron.

5. He does give a report card to Aaron on his dental hygiene.

6. We take this report card to Aaron’s ISP meeting and incorporate the teeth brushing into Aaron’s goals. Now, we know Aaron doesn’t brush his teeth—so this is mainly for the staff. But by incorporating it into the record keeping, there is some accountability for staff.

7. I’m sure Kathy and the others have all kinds of technical hints i.e. Because of Aaron’s balance issues, they adjust the chair for Aaron’s comfort—rather than theirs….

Dr. G.

As far as we know, Dr. G does not get paid for working with Aaron. We give the office staff Aaron’s medical card, but Dr. G has shared it is not worth his time to file the paperwork.

Kathy and the other hygienists always tell us it is their pleasure to work with Aaron. And they make us believe it. They make us feel Aaron is an important member of their caring community.

They make us feel welcome. We feel no one could pay them for the love and extra attention they give to Aaron. It is a special gift indeed.

I think they use Aaron to train their staff. Who knows whether that new hygienist may one day be doing Aaron or someone else’s teeth? I like to think Aaron is teaching them? Maybe they think, my god, if we can floss Aaron’s teeth—we can do anyone! Or, maybe it is a point of pride that they are damn good hygienists!

I think it is because they are just good people who care about other people. They are good hygienists with everyone–not just Aaron.

In return, as Aaron’s parents we cherish them and their gift.

State Cutbacks

When the state was going to reduce the dental visits from 2 times a year to once a year for people on medical cards, I wrote a letter to the state and called Ohio Legal Rights. The state cut back, reinstated, and then I think the current status is cut back again to one time a year.

Since Dr. G is so generous, we have had the luxury of taking Aaron twice a year. And we know we are blessed. Aaron has a great smile, his teeth and gums are healthy. We are lucky.

Tom and I also hassle the residential staff about brushing Aaron’s teeth. I’ve written before about how the caregivers don’t think this is necessary. So we make sure the staff knows this is a big deal and we will follow-through if Aaron’s teeth are not clean.

Every office visit, we also always bring all the dental staff flowers or a plant, we send thank you cards and tell them how wonderful they are. Kathy always gives Aaron a hug. And it always chokes us up.

Bill F.

Wolf Wolfensberger wrote an article about Bill F. I will never forget. Wolfensberger is a professor at Syracuse University who is famous for his theory of Normalization, Social Role Valorization and Citizen Advocacy.

In his article, Bill F. is a man with an intellectual disability who actually died because he was not given dentures that fit. This started a cycle of him not being about to eat well, manage his diabetes, which led to him becoming frail, which led to him falling, which meant he was put into a nursing home and lost his apartment and independence…. And died—all because he didn’t get the dental care he needed.

The other part of the Bill F story is about the role of advocates, friends, citizens who just cared about Bill and tried to get him help. These citizen advocates (here is an article from the MN Governor’s DD Planning Council site) gave Bill the dignity of being a friend and person. Not a client, not a patient, not a person with mental retardation who they were going to save or offer their charity. These citizen advocates cared about Bill the person.

I like to think Dr. G, Kathy and the other staff are not just doing their jobs when they treat Aaron. They have proven, time and again, they care about Aaron. He is more than just the patient in the 11:00 slot.

I think Aaron gives them something rare, something that makes them feel proud and humbled that they can be with him.

So, AHHHHHH indeed. Dr. G, Kathy and all people who work to give good dental care and sooo much more–Thanks We Love You. You make our mouths and hearts smile!

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

If you liked this post, please add your thoughts, share it on Twitter, Facebook… and other social media.
What do you think about the government cutting back dental services for people with disabilities? Does it make a difference if they only get their teeth cleaned once a year? Would they have extra reasons for needing check-ups twice a year? Is this discrimination? Are dental services for people with disabilities a waste of taxpayer dollars?

PS. You are allowed to disagree with me, a different viewpoint, helps us learn and find solutions.

Wolfensberger, W. (1989, December). Bill F.: Signs of the times read from the life of one mentally retarded man. Mental Retardation, 27(6), 369-373.

Down by the Ole Mainstream

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?