Autism: a lot more needed than “awareness”

Uh-oh Aaron's got an idea

Uh-OH, Aaron’s got an idea

Aaron playing with his Dad

Go Aaron

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April is Autism Awareness Month

 

 

Is Autism just the Disability du Jour?

 

April 2 is World Autism Awareness Day. In the US the month of April is “Autism Awareness Month.”

Autism and the public service announcements are everywhere on TV:

• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.

This is all good, right?

Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”

Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”

Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”

Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.

Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren’t really human and were only useful for human experiments.

Gone are the days when, there was no mandate for early intervention programs.

Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!

Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!

As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.

God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.

Some of the things we have learned are:

All people are human and have dreams, feelings, and hopes for the future.

All people have gifts and strengths.

All people have personalities and can love.

All people can learn.

All people benefit from early childhood programs.

All people benefit from differentiated instruction and universal
design.

All people need support and to learn to be interdependent on others.

All people have the right to life, liberty and the pursuit of happiness.

All people can communicate and have important things to say.

Behaviors equal communication.

People with autism and other labels can be contributing members of society.

People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”

The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.

The best way is for everyone to have first hand experiences:

Do you know that person’s name?

Do you see them in the grocery store?

Do you share time with them at Church?

Do your children go to school with them, play on their sports team?

Are they invited to your house, to birthday parties?

Do you see them working in real jobs, doing volunteer work, sharing their talents?

Do you enjoy being with them?

Do you allow them to grow up and become adults?

How can we teach self-determination and better communication?

SHOULD NOTS and SHOULDS

Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”

It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2018 we don’t know enough to have answers.

Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?

Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?

Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.

Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.

Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.

Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.

It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.

Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.

Certainly, I have written many times about how Aaron and others need more support and people who are trained to work with them.

Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.

Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.

Diversity is Beautiful

Is Diversity Beautiful?

 

 

Challenge

 

People with autism have taught us much about love, interdependence, talents and courage.

Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?

If so, then April can be a month of great hope.

The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?

Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.

Comments

I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?

Keep Climbing: Onward and Upward
All my Best,

Mary

Bob Perske| The Song of Joe Arridy

I’m Memory of Bob Perske, a real hero to families and people with disabilities.

Here lies an innocent man

Bob Perske is a pioneer, a storyteller and a “Group Man.”

In his book, Circle of Friends, he tells the story of vulnerable people building circles of support.

Bob wrote the following speech to bring together Joe’s Circle of Friends who, even though they couldn’t stop his execution, used citizen advocacy like a jazz band, and blended their talents to prove Joe’s innocence 19 years later.

Bob ends with lessons learned and suggests action steps so Joe Arridy’s life and death will not be forgotten. Perhaps he couldn’t stop the injustice of his execution, but now there is a legacy which can help others.

It is my honor to share Bob’s words:

REFLECTIONS ON THE GROUP THAT FOUGHT FOR JOE ARRIDY

Written by Robert Perske but Voiced by Attorney Anne Treimanis
Pioneer Museum, Colorado Springs, Colorado, May 18, 2011

The Circle of Life:

Fifty-three years ago, I befriended a teenager who worked in a mission hospital in Espanola, New Mexico. His name was Richard Voorhees. He worked a morning shift in the hospital’s kitchen, went to high school and returned for an evening shift.

We got together a lot. He saw me as a mentor. Later, the mentorship was reversed when Richard Voorhees went on to become a skilled professor of sociology and anthropology.

That’s why, in 1992, while doing research in Greenwich Village, New York, Voorhees discovered a poem in an out-of-print book. He sent it to me and said, “I’ll bet this grabs you.” The poem described a warden “who wept” as he watched a death row inmate playing with a toy train on the floor of his cell.

For more information on Joe Arridy

On another occasion, Voorhees taught me how to feel a deep respect for trumpet player, Miles Davis. Davis was uncanny when he played in combos with other great musicians. Davis never played solos. He said, “I play what WE can play; NOT ME. I never play what I can play. I am a “group man.”

I THINK MILES DAVIS WOULD HAVE BEEN MOVED BY THE WAY OUR GROUP HANDED OFF TO EACH OTHER THE SAD MELODY OF JOE’S LIFE.

The Sad Melody of Joe’s Life:

• The poem about the warden who wept was sent to Watt Espy, the archivist at the Capital Punishment Project, in Headland, Alabama.

• Espy researched and connected the poem to the execution of Joe Arridy. He sent a packet of news clippings and detective magazines on the case.

• News reporters and history archivists up and down the slopes of the Rocky Mountains helped with the search.

• A book about Joe Arridy’s life and death was published.

• Pete Strescino, a reporter for The Pueblo Chieftain wrote a review of the book.

• Screen writer Dan Leonetti read the review and the book — and then wrote a screen play called “The Woodpecker Waltz.”

• A California film producer named Micheline Keller read the screen play and shed tears like the warden did.

• Teddi Roberts, the executive director of The Arc of the Pikes Peak Region and the members of her group offered a home base for many who worked on Joe’s case.

• Arc Street Worker, Craig Severa, became Joe’s “foot man,” “bag man” and “on-the-street cheerleader.”

• Attorney Anne Treimanis created a website www.friendsofJoeArridy.com. She did it at her own expense and filled it with every pertinent fact she could find on the case.

• The Arc organized a fund raiser to pay for a dignified tombstone that replaced that awful rusty motorcycle license plate marker on Joe’s grave.

• The Arc gathered 50 of The Friends together for a tombstone dedication ceremony at Joe’s grave.

• Mike Radelet, one of the nation’s leading spokesmen for stopping death penalties came to the ceremony.

• Photographer Antonio Sanchez created a montage of photographs of the group in action.

• Antonio Sanchez and Dan Leonetti talked Denver Attorney Dave Martinez into attending the tombstone ceremony with them.

• Attorney Martinez became interested in the case.

• Then all of the Arridy files were transported to his office in Denver.

• Attorney Martinez worked off and on with all of us for the next three years before writing a petition to Governor Bill Ritter, Jr.

• Terri Bradt, the granddaughter of Attorney Gail Ireland, heard about The Friends and she joined them. Then she wrote a book about how her grandpa rose up and fought like a tiger to save Joe’s life. She described how Ireland managed to get at least six stays before Governor Teller Ammons called the prison warden and ordered Joe to be killed within the next few minutes.

• Lisa Cisneros, Director of the Colorado Alternatives to the Death Penalty (CADP) offered her organization’s support.

• A heart touching song entitled “The Woodpecker Waltz” was written by “Identity Traveler Tom Garcia.

• A lovely, tender-voiced singer named “Molly” keeps the tears flowing when she sings Garcia’s song.

• Attorney Annie Treimanis recorded the song for all to hear by placing it in Joe’s website.

THEN CAME A SCARY DAY

• On October 27, 2010, Attorney Martinez delivered a 523-page “Pardon Application for Joe Arridy to the Governor of Colorado.”

• It contained:
— The Petition and Footnotes (41 pages)
— The Legal Memo (11 pages)
— Exhibits (173 pages).
— Affidavits in Support of the Petition (88 pages)
— Letters of Reference in Support of the Petition (210 pages)

THEN CAME THE GOVERNOR BILL RITTER’S ANSWER

On January 7, 2011 — exactly 72 years to the day when newspapers announced Joe Arridy’s death — Governor Bill Ritter, Jr. issued a posthumous pardon.

THE GOVERNOR DID NOT STOP THERE

• He went beyond the expected by writing an in-depth three-page press release that went to newspapers and electronic media up and down the state. In it he explained in rich detail why he issued the pardon.

AFTER THE PARDON WAS ISSUED, OUR GROUP EXPANDED

• We were pleasantly surprised when relatives of Joe suddenly came out of the darkness and celebrated in public with us.

THEN CAME ANOTHER SURPRISE!

• We learned that Maria Tucker, a member of the Arridy family was employed as The Special Collections Manager for the Pueblo Public Library.

• Immediately, Dave and the group arranged for the transfer of the Arridy files to Maria who is now archiving them in the Western History Division of the Pueblo Public Library.

I AM AMAZED BY ALL THE SOLID PRODUCTS THAT HAVE BEEN PRODUCED THAT WILL NOT GO AWAY.

• There is a book about Joe Arridy’s life and fate.

• There is a book about Gail Ireland’s legal fight to save Joe’s life.

• There is “The Woodpecker Waltz,” Dan Leonetti’s heart touching filmscript.

• There is the website.

• There are hundreds of facts about Joe Arridy now being sent into cyberspace for the whole world to read and ponder forever.

• There is Dave Martinez’s petition for Joe Arridy’s pardon and the Governor’s response now filed in the vaults of the Colorado State Archives.

• All files on the case have been archived in the Western History Department of the Pueblo Library.

NOW COMES ONE MORE ROCK-SOLID PRODUCT!

• Five new words have been chiseled deeply into the face of Joe’s new tombstone. (See picture above.) They say:

“HERE LIES AN INNOCENT MAN”

• (Craig Severa will probably go to jail for adding them without asking permission from government officials who rule on such things.)

• Tomorrow all of us will go in a caravan to Woodpecker Hill to dedicate it.

IT TOOK 19 YEARS OF STRUGGLE
BEFORE WE COULD PUT THOSE WORDS ON JOE’S TOMBSTONE!

NOW, I SAY LET’S GO FOR ANOTHER 19 YEARS!

• Let’s apply what we learned on other heartbreaking miscarriages of justice.

• By the end of this next segment, I will be 103.

• So let’s get going!

• Here are five issues I would like to see us tackle.

1. WE NEED TO GAIN A CLEARER UNDERSTANDING OF THE HUMAN “WILL TO BELIEVE.”

As a young dad, I lectured my five kids about putting my woodworking tools back on their assigned hooks in the garage after they used them. Once, when one of my tools was missing, I yelled at the son who failed to put it back. I nailed the little guy. I harangued and harangued and I didn’t let up . . . until my wife softly took my hand and led me to the place where I had left the tool!

After sitting in many courtrooms, I have sensed how that wily little rascal, “the will to believe,” can corrupt the true facts of a case.

2. WE NEED TO STOP THE DEATH PENALTY

I shudder when I try to figure out how one mortal man can legally execute another mortal man. The Supreme Court’s ruling, in Atkins versus Virginia in 2002, did ban the execution of persons with intellectual disabilities, but I can’t let myself off the hook until the rest of humankind has this legal protection as well.

3. WE NEED TO DO EVERYTHING POSSIBLE TO SUPPORT AN ORGANIZATION CALLED THE “MURDER VICTIMS’ FAMILIES FOR RECONCILIATION.”

I am deeply touched by a certain fast-growing movement of families whose loved ones were murdered. Members of this group meet together and help one another to stop the agony that comes from screaming for “paybacks” for the killers of their loved ones. Now hundreds of murder victim’s families are helping one another to find a reconciliation. For them:

“Reconciliation means accepting that you cannot undo the murder but you can decide how you want to live afterwards.”

4. WE NEED TO FIGHT FOR THE VIDEOTAPING OF CRIMINAL INTERROGATIONS.

Due to our faulty “will-to-believe” attitudes, we will never “get the truth and the whole truth even with God’s help” when officers and suspects merely swear on the witness stand about what happened in the interrogation room. I believe that:

Judges and juries must be helped to see and hear for themselves everything that went on in the interrogation room. In this digital age it can be done by videotaping.

5. WE NEED TO RESPECT THE GOODNESS IN POLICE OFFICERS

I cannot name a school teacher who became a positive force in my life. But I can name a cop who did. His name was Bob Swanlund. He crossed my path on the inner streets of Denver when I was a teenager. He took to me and I sure took to him. On days off, we pitched a tent on Squaw Peak, the 11,540 foot mountain, 29 miles west of Denver and just in front of Mount Evans. We camped up there at least 40 times in three years. He became a father figure to me. During that time, I even tried to walk like him and talk like him. We stayed close until I went into the service in World War II and he became a department head in the Colorado State Patrol. During that period, he gently drummed into me the basic mission of every good police officer:

“The mission of every good police officer is to insure the safety and security of the neighborhood in which he serves.”

There is no job that is more noble than that.

SO NOW YOU AND I WILL BE MOVING ON.

I plan to go as a true believer:
I believe in God.
I believe in Evolution
I believe that all of us are brothers and sisters who were tied together by a single DNA match millions of years ago.
I believe that our earth revolves around the sun.
I believe there are thousands of solar systems like ours.
I believe that Martin Luther King was right when he said that “the arc of the moral universe is long but it bends toward justice.”

Joe giving his train away before his execution.

I believe that someday I may meet with Joe Arridy . . . I want so very much to do that.

In my career I came to care about many people like Joe:
So vulnerable
So concrete in their thinking
So unable to figure out all of the complexities going on around them
So trusting of those who understand more than they could
So quick to respond to kindness from others.
So I believe that someday I will be able to get down on the floor together with Joe and his train. . . and both of us will be laughing and shouting:

“Train wreck! Train wreck!

Comments:

Each of us “wills to believe” our government and justice system will find and punish the guilty, and free and protect the innocent. It is unsettling when the system doesn’t work. What are your thoughts?

Should people who have the label of intellectual disabilities have additional protections in the criminal justice system? Are the above action steps Bob suggests, so drastic and costly they cannot be implemented?

Bob’s song reminds me of Jazz, where each musician plays their own instrument and contributes their soul to the song. The members of Joe’s song were attorneys, friends, organizations… each adding their voice to the music. Is there a way to use each of our talents to work for social justice and change? Are you a “Group Man” or “Group Woman”? Is the song of Joe Arridy really a sad song?

Related Posts:

Hope for the Families

Richard Lapointe and more

Unequal Justice

Bob Perske’s website

Keep Climbing: Onward and Upward

All my best,

Mary

Bob we love you.

Dream Plan for Aaron: 1998 (Part 3)

High School

Aaron and Friends

In Part 1 (1981) Aaron was 6 years old and we outlined a vision of what a happy, successful quality of life would look like for Aaron as an adult. (click here).

In Part 2, Aaron was 14 years old and we were moving forward with the plan(click here)

In Part 3, Aaron is now 23 years old and is moving out of his parent’s house and into his own place with a roommate and 24 hour assistance from caregivers. For a peek into his home setting here is an earlier post. (Click here)

Transition for Aaron and Mom

When Aaron was getting ready to move out, I wanted to write down some general ideas for the new caregivers. I knew there would be several of them and I wanted to have something in writing that would be in Aaron’s file. I’d read other parents talk about how staff people did not listen to parents. There were also so many details to remember, I knew it would be hard for anyone to remember everything I wanted to say.

Also, Tom and I were meeting with an attorney to try and set up a will and trust. We needed a statement of what we were hoping Aaron’s life would look like should we die.

Here is the report–or list–or letter that passes on some of the information I knew about Aaron.

In some ways this was part of my transition as well as Aaron’s–Part of my ability to let go of giving Aaron care 100% of the time and hoping he would be happy and safe.

We planned on taking Aaron home every weekend, and we planned on having the staff become part of our extended family and Circle of Friends.

We knew Aaron and the staff would work out their own ways of doing things, but it just seemed to make sense, that when Aaron couldn’t talk for himself, there would be some written communications about his likes and dislikes.

Because Aaron doesn’t talk with words this is my way of giving him a voice.

Aaron Ulrich (12-18-74)
November 25, 1998

Aaron’s Likes and Dislikes:

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Aaron is a very friendly person who likes to be around other people.

He sometimes will watch you from a side-way position instead of looking at you straight-on (He doesn’t like to watch much television, but will watch TV most comfortably from a side position also).

Aaron is also very intelligent. He will understand everything you say. Though, like most of us, he has selective listening when he doesn’t want to hear what you are saying. i.e. “Aaron it’s time for bed.” You want to talk to Aaron in a normal voice. He doesn’t like it when people try to talk to him like he was a baby. He doesn’t like high-pitched or very loud voices.

Movement Disorder/Autism

Aaron sometimes likes to be by himself, and will sometimes try to avoid being touched. At these times, I allow him to get his radio or a magazine or look out the window in his room (open the blinds). If he wants private time in his bedroom to lay on the floor and masturbate I will shut his door.

Some people will tell you people with autism don’t like to be touched or be with other people. That is not true with Aaron. Sometimes he likes to be by himself, but most times he likes being with other people. He is very sociable and friendly.

Aaron likes hugs and “Hi 5’s” and will shake hands. He will sometimes come and sit by you on the couch and very much want to be a part of things. Sometimes he will initiate these, but many times because of his movement disorder, he may have to be touched (either on the shoulder, or actually turned on the floor into a position where he can get to his knees) and formally invited to join in.

One way of getting him to join the group is to offer him a transition object. i.e. “Aaron, here are some cards, or a book to take to the living room.” “Give this to James” (his roommate.)

If you are interested, I have a book with more information on movement disorders written by Anne Donnellan.

Aaron uses facilitated communication to type messages. His typewriter is in a gray bag in his closet. His computer is in the room downstairs, it needs to have the initial program reinstalled at Microcenter. Tina Veale is his best facilitator, and she begins speech therapy again on Dec. 4th. If you are interested, I will provide the book Aaron wrote and a video about Facilitated Communication.

Books

Aaron is particularly interested in Science and People. I try to find books, textbooks and/or encyclopedias with lots of pictures on these topics. I try to find age-appropriate books that would be used by other people his own age (not picture books young children would use. We are always looking for more books, because they tend to not last long. Aaron will lick the pages of the books, when they get beat up or torn throw them out and let me know so we can get more books.

Cards to Flip and Sort

He also likes cards any topic: playing cards, picture cards, sports cards. These seem to calm him and are good for “waiting” times i.e.. in the car, lines in grocery stores…” He will pass the cards back and forth with you.

Aaron has Balance issues.

He will bite his hand or grab the closest object (which could be your arm or hair) if he is in a situation where he is off balance.

I try to place his hand on banisters or on escalator handrails wherever possible. He loves elevators, but again, I place his hand on a wall or handrail in the elevator. I grab his hair back and he will release your hair. This is almost an automatic response and usually it only takes touching his head for him to release.

We have found that placing a doormat at the place where he is to step seems to help him focus and position his step. This includes a bathmat in the bathroom and doormats by the front door and the bottom of steps (including the basement).

Another good idea is to take cards, etc. away from him as he goes down the stairs so he can use both hands for balance. If he gets in a position where he cannot move or is moving very slowly, place a hand on his shoulder; or have a person in front of him i.e. he will go up and down the steps on the bus faster if another person is in front of him, it is better for him to be in the middle of the line than first in line. Another trick for getting him to climb up or down stairs is to count them out loud (one, two …).

Bathing and Grooming

Aaron does not wipe himself so he will need help after he has a BM’s. His underwear needs to be monitored for discharge. Aaron will initiate going to the bathroom by himself, but he should be reminded to go whenever you are getting ready to leave the house. If you are in the community insist on him going every 1 1/2 to 2 hours more if he is drinking lots of liquids or has just finished swimming. Sometime Aaron will say, “Bathroom” or give the sign for “Toilet”.

Aaron likes leisurely baths. We think this might be because he can sit down and control his balance. Liquid soap with aloe (for his sensitive skin) is to be put on the sponge. The sponge stimulates his skin and helps in relaxation. This is a technique that is called “rubbing” in physical therapy. Usually I will give Aaron the sponge and encourage him to wash his private parts which he can do with some success. Then I will reapply the soap and scrub his underarms and privates again–particularly the right side of his upper groin area. (This is an area that will often get a rash.) Aaron does not wipe himself after using the bathroom so his bottom needs to be washed well. Aaron gets his hair washed with a mild shampoo every day. I usually use Ivory – full body or one of the others with no conditioners. Usually it has worked best to use a pitcher to rinse. Aaron likes his eyes wiped immediately after with a towel or wash cloth. Lastly, I wash Aaron’s face with a wash cloth. Watch for a big smile as you wash his forehead and cheeks:) . Aaron does pretty well in getting out of the tub. He has learned to brace his feet on the opposite side of the tub. If he leans forward he is usually able to swing his feet around so he can support himself in rising. When getting out of the tub, place his hand on the wall or on a rail for support. He likes a good rubbing with the towel, particularly on his back (Almost like a massage). Aaron will take a shower, which work well when you are in a hurry, but he loves baths.

Because Aaron will sometimes pinch, it is a good idea to make sure his fingernails are very short. His clippers for fingers and toes are in his top drawer.I try to use the clippers after his bath when his nails are soft. Sometimes you can only do one or two nails at a sitting, then you must wait until he is calm and try again. I try and cut his fingernail and toenails after his bath when they are soft.

Eating/Drinking

Aaron sweats a lot, so he needs lots of liquids. One soda pop per day is best. He usually chooses Diet Pepsi. If he drinks more than one pop, Aaron gets hyperactive and will sweat. He drinks a pop at the police station each morning on his job (ask the job coach if he is still doing this.) so alternative drinks are ice water, weak ice tea (so not to stain his teeth), and fruit drinks. I try to stay away from the red dye colored products. Aaron likes to drink his milk with ice in it. He also likes to chew on the ice. I try to get 1%, (the fat free seems to spoil so fast). Aaron can pour his own drinks from the fridge, though he will need to be monitored. He can put his cup in the sink when he is finished.

In order for Aaron to be able to go for Horseback Riding in the Spring, he cannot weigh more than 175 pounds. Dr. Freeman has written a prescription for a dietitian which was
given to Gloria after our Doctor’s visit last week.

Aaron’s diet is very important because only through monitoring his diet and vigorous exercise will we be able to keep Aaron off medication.

Morning Routine

In the morning Aaron has a very acid queasy stomach. If he drinks milk or orange juice without food, he will vomit (reminding me of a pregnant woman). We have found that if we give him a soda cracker or a couple oyster crackers immediately upon waking up, then he is fine and can eat breakfast. I usually force him to eat the cracker (put the oyster cracker in his mouth almost like a medication) but I do not force him to eat breakfast. He used to like to eat 1/2 a peanut butter and jelly sandwich before he caught the bus, and take 1/2 the sandwich with him. His snack at the police station is essentially his breakfast (ask the job coach about this).

Snack

Because Aaron has a one on one job coach at the police station, a fruit cup (low calorie) with a plastic spoon and a peanut butter and jelly sandwich (could be the one he didn’t finish at breakfast) and a napkin. The job coach should be consulted about how this is working. Often the policemen give Aaron treats.

Lunch

Aaron is not big on Ham, but will eat most anything else. Because there is noone to supervise at the workshop I usually used plastic sandwich bags that folded over, not zip lock. Aaron can open a bag of pretzels if he really wants them.

I can hardly think of his lunchtime at the workshop without an anxiety attack, again check with Vicky to see how this is working.

I try to fit both his snack and lunch in his backpack so he doesn’t lose them in transit.

Dinner

Aaron can help set the table with a placemat and after they are washed, he can sort the silverware into the drawer. He can clear dishes though you have to make sure he doesn’t just throw them into the sink (they break).

Aaron will need to be reminded to eat slowly. He alternates left and right hands, his food will need to be cut up. If he is eating too fast, the system from home and school was to put the sandwich or fork down between bites. It is unacceptable for him to grab food from anyone else’s plate. He will use a napkin if reminded. He is to keep his food on his placemat (that is his space).

Aaron likes most all foods. Favorites: sharp cheddar cheese, popcorn, pretzels (nonfat) drinks, drinks, drinks, not big on candy and for some reason has decided he doesn’t like ham. Everything else look out! I’m trying to get him to cut back on french fries and choose something else.

Future Goals

Aaron really likes a schedule and some structure. A schedule book and a set routine like swimming and gym on Monday and Wed., grocery on Tues….. Aaron used an order book at restaurants when he was in school, he also participated in grocery shopping. I have some information on this if you wish.

There are two cookbooks with pictures (from his friend Julie) which have simpler recipes near the counter. I would like these to become some of Aaron’s ISP goals when things get settled.

Aaron says “hamburger” and “popcorn” for most everything. They usually mean he is requesting food. Though they might be his way of engaging you in conversation and have nothing to do with food.

Aaron has two exercise bikes downstairs. He will ride them if someone else rides the other. He will also play some notes on the organ if you sit close to him on the bench or a close chair. I usually try to touch him- my leg to his leg. Again this is another form of the movement disorder and using facilitated communication. If he is sitting at the table, he will be more calm if someone else is also sitting at the table, he will eat if someone is also at the table eating….

Aaron also likes to look at pictures, so we will be giving him a camera to take some pictures for scrapbooks for Christmas.

I hope this gives the basics, Aaron is just a great loving person. I hope you can love him as much as we do.

Additional Thoughts after Aaron actually moved in.
November 29, 1998

Clothing

Because Aaron is always hot, I try to put him in layers of clothing with a t-shirt underneath that could be his shirt if he needs to get cooler or if he spills anything on his shirt. Aaron has started to be bothered by his neckline, so recently I have been getting him V neck t-shirts and/or golf type shirts with buttons. This seems to reduce his discomfort and saves the shirts from figorous pulling at the collar. For sweat shirts I get him X-Large so he can take off the shirt himself when he is sweating.

Toileting

Aaron is to always sit down when he goes to the toilet. Because of his movement disorder, this helps his balance. Plus, his aim is terrible and this saves the walls, but sitting down is the only way I have figured out for a much more serious problem. In public restrooms, Aaron cannot use a zipper like most men, which then means he has to pull down his elastic waist pants exposing much more than the typical person. This not only makes him more vunerable to abuse, but it has caused some smaller children to become afraid (one parent told me he had exposed himself to her son). In order to be consistent across environments and avoid unnecessary safety risks, it has been our policy at school and home to just have Aaron go into a stall and sit down.

Aaron will need to be reminded to flush. This has been a major goal for a long time. Usually a gestural point to the toilet is enough. A verbal prompt “Flush the toilet” is plan B. I usually body block him so he cannot leave the bathroom until this is done.

Teeth

Aaron needs to have his teeth brushed 2 times daily. After his cracker in the morning and at night. Aaron will often gag. I let him try to brush and usually I sing three times: “This is the way we brush our teeth, early in the morning (before we go to bed). After he pushes the brush around in his mouth, I take the toothbrush and scrub more completely. Aaron has to go to the hospital and be put under for cavities and intense cleanings so thorough cleaning is important. The dentist said we need to be extra concerned about his front bottom teeth, front and back.

If Aaron has milk or pop before he goes to bed, I try to give him a little water to rinse off his teeth. Aaron has been able to go through the motions of gargling water at times, he is good at spitting.

Illness

Aaron is very seldom sick, but because he can’t tell you verbally there are signs to look for: He will get feverish and be laying around more than usual; He will be pulling on his ears or will seem to want his radio very loud (usually means ears are plugged with wax); For these two conditions I usually have Aaron go to the Doctor.

Sometimes Aaron will be congested. Aaron does not blow his nose, so he has no way to get out the phlem. When he seems to be getting a cold, I will give him Benedryl to dry him out (in top drawer). Sometimes I will use a vaporizer over night, which seems to help a lot. If his nose gets crusty, put a little vasoline under his nose.

Sometimes he will throw up. Aaron will not make it to the toilet so either a bowl or a towel are put up to his mouth. Aaron usually throws up in twos, so after the first burst, wait a moment and then a second round will begin. Then usually I wash his face with a warm wash cloth, and let him soak in a medium warm bath (not hot) and give him an ounce of pop when he wants it. I only let him have one ounce at a time. He will keep saying “drink” but he gulps it and then throws it up again.

Aaron sometimes get a rash on his groin area. This area needs to be washed and dried after each bath. Prescription cream is in his top drawer if rash develops. First apply the Lamisol, then the Hydrocortizone cream.

Aaron can take small pills but has trouble with larger pills. If medication can be given in liquid form or small pills he does fine. For pills, place one pill in his right hand and have a glass of water ready in his left hand.

Note: Aaron is extreemly sensitive to the sun. He can sunburn in Summer and in Winter and should wear sunscreen whenever in sun for over 15 minutes (in top drawer or in backpack).

If you have any other questions, I’m just a phone call away.

Thanks for working with Aaron. I know you will soon learn all the little things that make him such a loving person.

What do you think?

Would all this detailed information be helpful? Do you want to take bets on whether the caregivers and staff even looked at this?????? What would you do?

Keep Climbing: Onward and Upward

All the best,

Mary

Olympics and Disabilities| Lessons in Inclusion

Oscar Pistorius, Inclusion at the Olympics

Olympics, Disabilities and Inclusion

There are many legends around the origins of the Olympics. But the main idea was countries and individuals would meet every 4 years and set aside conflicts–and this shared experience would lead toward greater understanding and fewer conflicts.

Many believe the ancient Olympic games began with a foot race.

The 2012 Olympics were held in London, England. And, a footrace is not so simple. Turns out, the definition of a “foot” was a source of conflict.

Even with later personal tragedy, The Olympics story of Oscar Pistorius from South Africa is an inspirational lesson about the inclusion of people with disabilities.

Check out this video, “The fastest man with no legs” who uses his “blade runners” to race in the finals of the Olympics.

Yes, he races in the segregated Paralympics, but also in the inclusive regular Olympics.

This is an example of inclusion, self-advocacy, the power of a supportive family and an exceptional adult with disabilities.

I think this is also an excellent example of what the Olympic Spirit is all about. The Greek founders might never have envisioned this sort of story, but I’ll bet they were cheering up on Mount Olympus as Oscar became one of the fastest runners in the world.

“Unfair Advantage?”

If you have feet, you have tendons and muscles which give a “spring” to your step.

If you don’t have feet, you … what—sit at home? OR…

You only have the choice of a segregated Special Olympics or Parolympics event?

As Dennis Burger says, “I always think it’s ironic when officials claim an unfair advantage by a guy with a prosthetic device. Go Oscar!”

Natalia Partyka, Women’s Table Tennis

Go Natalia!

Lessons from the Olympics

Why is it that those of us who would never spend 10 seconds playing or watching ping pong, or skeet shooting, or footraces… voluntarily devote our precious time to these events on TV?

Why is it we choose to root for one team or one person?

With all the important events happening in the world, why would the evening news start out with the country’s Olympic medal count?
What is the magic that draws our attention?
I think the answer has to do with the concepts of “Us” and “Them.” The answer is rooted in our deep psychological need to belong.

We can wonder about the concepts of nationalism but like it or not, we are part of a tribe, a nation, we are part of “Us.”

And when the collected ego of our nation wins, we win.

So we say, “Go USA” or “Go England” or “Go Canada” when we really don’t care one bit about archery or who can do the backstroke.

The need to belong

The Need to Belong

In Maslow’s famous “hierarchy of needs” belonging and having people who care about you is critical to survival–more important than how many skills you have or self-actualization. Sometimes this means being part of a tribe, sometimes being part of a family, sometimes part of a church, school or … nation.

Or, sometimes sharing a bond with someone with a disability.

So when we hear about a runner who uses blades because he has no feet, or a woman who only has one hand and is a table tennis champion—suddenly we care about them.

We switch our allegiance and transfer all our goodwill to these courageous individuals because they have a disability and are part of our TEAM INCLUSION. We don’t know them personally, we aren’t a part of their country, but they are part of our heart.

They prove that all our daily advocacy efforts are worth it. That the dream of inclusion can be real.

They are changing the attitudes and social consciousness of a whole generation.

And it doesn’t matter if they are from South Africa or Poland or anywhere—they belong to us and our vision of an inclusive world.

Comments:

I’m hoping you and members of our Climbing Every Mountain community will also share stories of belonging, inclusion, the Olympics, and building communities.

Keep Climbing: Onward and Upward

All my best,

Mary

Related Links:

The Values of Inclusion

See Aimee Mullen in a previous Olympics.

Do the Words “Disability” and “Handicapped” mean the same thing

Aaron’s Olympic Moment

Aaron’s Inclusion on the Junior High Track Team