Posts Tagged ‘parents of adults with disabilities’
Every day we read about good people planning charity events for people with disabilities.
I’m not sure how I feel about this.
Wait! You are wondering how I can be an advocate for people with disabilities and not just jump up and down when two caring people are trying to raise funds for people with disabilities?
Let’s just say, “It’s complicated.”
My first fundraiser was when Tommy was an infant, Aaron was 20 months old and still not sleeping through the night. Two hours a day, I would drive them across town to Stepping Stones Center for the Handicapped. Perfect time for me to volunteer to lead the fundraiser, eh?
What pushed me into action was there were about 30 babies in the Stepping Stones program and no teacher. Sure there were amazing volunteers. But these children, who needed so much help, did not have a qualified teacher. I found that unacceptable. I could sleep in a couple years.
The local shopping center was having their annual charity craft show. At the organizational meeting, I gave my impassioned speech, we were chosen the “designated charity” and then for the next month all the parents, grandparents, friends and neighbors of the “Tiny Tots Program” spent our free time making items for our booth. We raised about $3,000 which was then matched by the organization and an official “teacher” was hired.
After that there were the fundraisers for The Mother’s of Special Children and the Arc (formerly known as the Association for Retarded Children), and TASH (formerly known as The Association for People with Severe Handicaps) and on and on.
I met other mothers (mostly) and we had many good times, but I started asking why we had to have charity drives to fund important services other children in the community took for granted.
Regular Inclusive Fundraisers
After our court case and Aaron was finally allowed to go to public school, I got involved in the regular school PTO fundraisers. There were spaghetti dinners, White Elephant sales, Dances, Raffles, Magic Shows, Motorcycle Rides, Bake Sales, Races for… and saving boxtops, cans… It goes on and on.
I learned about inclusion (click here) and realized we didn’t need a “special track team” we only needed an extra support person to help Aaron to participate in the track team events.
“Disability World” Fundraisers
This led to more committees, grant writing, working for levy’s for the County Board of Mental Retardation and Developmental Disabilities as well as the regular local school district.
Other parents got to have jobs and earn money to help their families. I got to be the only non-paid person at numerous committee meetings.
Now, we did some great things that wouldn’t have happened without the volunteer parents. We began an after-school club and a summer school program so our children would have something to do and not lose all the skills they gained during the school year. We started four non-profit groups and incorporated. Yes, indeedy, sleep would have to wait.
But it never ends.
It is my feeling many of these organizations spend their energy insuring their own jobs and pay and giving lip service to the support of people they are supposed to be serving.
Autism Speaks, March of Dimes… are currently under fire because one of their main reasons for existence is to raise money to wipe out people with autism and developmental disabilities. They want a cure and spend much of their funds on sending Medical Doctors to conferences and conducting research.
But what about the people who are here now? These professionals, who make good salaries, have their way paid to conferences. Parents, who volunteer, not only pay our own way–we are supposed to donate to send the doctors? Plus, their executive directors make big big bucks. When I learned what some of the executives of these charities were making–that was it.
When it is all about charity, then it is all about the person who is giving the money. When it is about a person’s life and rights, it is about the person with the disabilities.
There are some large organizations who understand this, but most don’t. Here’s a post on my experience outside my grocery store (click here).
Everyone wants to help babies and young children
I know Aaron’s life was more interesting because of my leadership and volunteer work. But now he is an adult, and there are even fewer opportunities. Babies are cute and helpless and of course we want to help. But the majority of our lives we are adults. That’s 20 years as a young person and maybe 50-60 years as an adult.
So, I don’t do much volunteering for charitable organizations any more.
I spend every moment of my life working directly with the people with disabilities or the caregivers on the front lines. The ones who make little more than minimum wage. The people who take Aaron to the bathroom and clean up his messes. The people who celebrate Aaron’s diversity and think he’s a pretty neat guy. There is no tax write-off, no non-profits. Just people who care and need resources.
Segregated Charity–charity gone wrong
I don’t believe in onetime events like, “People with Disabilities Come to Church Sunday” where the church rents a ramp for the weekend (I couldn’t make this up). I don’t believe in Special Olympic Golf Fundraisers, when they won’t let Aaron even ride in the golf cart (“Oh, honey we just raise money for these poor children, we don’t actually want them on the course.”–couldn’t make that up either.) I don’t want Girl Scouts showing up at my door saying they want to play with my child because it is Lent and they have to do penance (some day I’ll share the details on that one.)
As Joe Shapiro wrote in his classic book, “NO PITY.” People with disabilities don’t want to be the object of other’s charity. People with disabilities have needs, but they are citizens with rights. They don’t want the handicapped parking place because you are having pity on them. They want the handicapped parking place because as a citizen and consumer, they need the extra wide space so they can get out of their car. And, as an American, I’m proud our country recognizes that right to equal access.
If we really want to help people with disabilities–don’t give them your dimes. Instead make room in your lives and give your love..and your friendship. That is the best gift and, I believe, closer to the Biblical definition of “charity.”
Like I said, this is complicated.
What are your experiences with charity models? With helping people with disabilities? What does it feel like when you are the giver? When you are the receiver? When do you feel pity? Charitable?
The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.
When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.
What’s the difference? Same kid, same activity. Why is one turkey a treasure, another only fit for the garbage?
The difference is the educational and philosophical debate between “developmentally age-appropriate” and “chronologically age-appropriate” activities for people with autism and developmental disabilities.
In a previous post, I introduced Dr. Lou Brown’s ecological assessment tool the “Life Space Analysis” (click here) This planning tool for people with disabilities helps identify the when, where, who and what fills a person’s day and gives clues on a person’s quality of life–though this tool can be useful for all of us.
1970s: The Birth of Special Education
Back in the 70s when IDEA was passed and people with disabilities first got the right to go to public school, everyone was trying to figure out how people with disabilities learned? What were the appropriate activities and curriculum? If you want more information about this time period click here: Parallels in Time II.”
Dr. Lou Brown and his colleagues found adolescents and adults across the country playing with infant toys. The “what” in their Life Space Analysis consisted of meaningless activities repeated every day like: coloring, stacking blocks, putting colored rings on tubes, playing with wooden puzzles and generally keeping Fisher Price in business.
The rationale was these students were eternal children. It didn’t make any difference what they did. There were no expectations. They had low IQs and were functioning at a preschool or early childhood developmental level. So teachers used materials and activities matching the student’s developmental levels. For example: If a person had an IQ of 50 and a developmental age of 5.2 (6 years and 2 months), then the person with the disability should do activities that matched what a normal 5.2 month old child would do. It didn’t matter if the “child” was actually 19 or 35, or 70 in chronological years.
2010: Adult Services
I have to admit, I thought the idea of developmental age was long dead. Aaron went to public school and had plans for his future as an adult (click here). He had a functional community based curriculum, he had a transition plan, and he had work experiences. Plus, the research in the whole field of special education and adult services, strongly supports the idea of chronologically age-appropriate activities.
So, again: What’s the Problem?
In my recent round of looking at adult day care for people with disabilities and the elderly, I have been shocked out of my mind to find rooms with Fisher Price toys. I know the toys are indestructible, but come on. They are NOT AGE-Appropriate! If the toy package says ages 3-6, then if you are over 6 years old, it is not age-appropriate.
Schools vs. Adult Day Care
The difference between best practice in the schools and best practice in adult services is the fact that the staff and teachers are licensed. They have training and have studied the research literature about best practices. They have done student teaching and got first hand experiences under mentor teachers.
The people who run and work in the adult day care systems are lovely people who have high school diploma’s (or GEDs) and because the job pays little more than minimum wage, they get no inservice, no vision of what CAN happen. They have the reality of too many people with disabilities, not enough help, and no training. So making preschool turkeys, or paper plate pilgrims makes sense to them. The materials are cheap and the activity matches their developmental ages.
I am thankful Aaron has some place to go during the day. (Some states have nothing and the people sit at home.)
I am thankful these kind people don’t abuse and hurt Aaron.
I am thankful they take him to the bathroom, wipe up his messes, help him eat his lunch, and do their best.
But, they send home a paper plate bunny, toilet paper firecracker, macaroni Santa… And I am not thankful.
I don’t have an answer. I have tried to send in more age-appropriate materials and resources. I have tried to show alternative activities. And they are not thankful.
What do you think? Is my age-appropriate rant just silly? What do you think I should do the next time Aaron brings home a preschool craft? Do you think the types of activities makes a difference to the people with disabilities?
If this makes sense and you want to spread the word, please retweet or link to Facebook. We have a whole lot of people to reach before the Christmas and holiday crafts begin.
I would be thankful.
Keep Climbing: Onward and Upward
All my best,
Brown, L., Branston, M., Hamre Nietupski, S., Pumpian, I., Certo, N. & Gruenewald, L. (1979). A Strategy for Developing Chronological Age Appropriate and Functional Curricular Content For Severely Handicapped Adolescents and Young Adults. Journal of Special Education, 13(1), 81 – 90.
Building Community: One Grocery Trip at a Time
With Aaron, my son with the label of autism, every trip to the grocery is an adventure.
Before we go, I usually do an ecological assessment (click here) and use some of the skills Aaron learned in his functional curriculum when he was in school.
Over the years and with lots of practice, I know what Aaron likes and dislikes. I try to make the shopping trip a good experience for both of us.
We try to go in the morning when the store isn’t crowded. We’ve developed a system where I walk in front of the cart making sure there is no person or display in the way. Aaron then follows pushing the cart with both hands on the handle.
Aaron is really good at following and knows to stop when I stop. He seldom bumps other people or the displays. This is a skill we have worked on for years and practice every week. I am really proud Aaron can do this.
We usually go to the same store.
That way Aaron is familiar with the physical space and layout. He knows the grapes and carrots are on the right front, the bread is in the right back, and after we pick up the milk and yogurt on the far left we will head to the checkout lanes. We usually only buy about ten items so the wait in line is short. We try to build a routine and structure into the experience.
We try to build a relationship with the store personnel.
This store was only a mile from where Aaron went to high school but in the suburbs we rarely see anyone we know. One of the baggers used to be in the special education program. She does a good job and always says hello. Some of the regular shoppers talk to her by name. She is one of our special ed. success stories and has been employed for over 10 years.
But I never know what’s going to happen.
Yesterday we went to the grocery near Tommy’s house because we wanted to let his dog out for him. Even though it was the same chain we always go to, the store was set up differently. STRESS.
I thought noon on a Sunday would be okay, but it was packed and everyone was in a hurry because the football game was due to begin at 1 PM and the only way to survive a football game is with lots of beer and snacks. STRESS. STRESS.
Being ready for surprises
Aaron did pretty well. We got our groceries and went to the car. I was putting the bags in the trunk when Aaron started pounding on the roof of the car next to us. He’s never done that before.
The young man was getting his two young daughters out of the passenger side. He looked up and yelled, “Hey, stop that!”
Quickly I grabbed Aaron and was about to get him into his seat when Aaron pushed me away and again pounded on the top of the car. This time the guy came over to our side of the car.
I started to apologize when the guy said, “Aaron, is that you?”
Aaron gave him a side-ways glance.
I was stunned and didn’t quite know what to say. I looked at the guy and he looked at me, and he repeated, “Is that Aaron?”
There wasn’t much room in the space between the two cars. I took a deep breath and turned Aaron toward the young man. “Aaron do you know him?”
Instead of punching Aaron, the man gave Aaron a high-five.
I fumbled out a, “How do you know Aaron?” and the young man said they went to high school together. He said he used to come into Aaron’s class and take him to the gym. He said he and Aaron used to eat lunch together.
He touched Aaron’s arm and guided him over to the other side of his car and introduced Aaron to his two children who were about 5 and 3 years old. He told them Aaron was a friend from school and then had Aaron give them each a high-five.
Aaron was strangely quiet. He patted the younger child on the head and said, “Ahh.”
I thanked the man for saying hello. He said his name was Todd and he asked a couple questions about where Aaron lived.
We both talked about how Aaron must have recognized him and since he didn’t have any words, he used the pounding on the car to get attention. We both thought that was very clever of Aaron.
Finding More than Groceries
When we worked so hard for inclusion for Aaron in the public schools, we dreamed that Aaron would have a community of people who knew and accepted him. People who could see his gifts and strengths.
Every once in a while we have a unique success story that makes all that hard work worth it.
We’ve never expected big monumental experiences. This magic moment where Todd remembers Aaron and thinks enough of him to want to introduce him to his children–that’s big enough.
I hope you will check out a couple of the other blog articles and share your thoughts.
Do you have any community experiences to share? Any magic moments?
Do you think the future will be better for adults with disabilities because of inclusion in the schools?
Keep Climbing: Onward and Upward
All the Best,
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.
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.
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.
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….
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.
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.
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,
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.