I love Aaron| I hate Autism

Aaron and his family

Our Family 1980

Aaron at piano

Aaron at Piano 2011

Proust says, “The real voyage of discovery is not in seeing new lands, but in seeing with new eyes.”

Can I love Aaron and hate autism?

If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.

If I say, “I love my son, Aaron. I hate autism.” some people say that is NOT okay.

So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.

I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.

I love individuals who have autism, just the way they are.

But–I will not celebrate autism like it is a good thing.

World Autism Awareness Day April 2

The United Nations designated April 2 as World Autism Awareness Day. April 2nd next year is already designated too.

Are you going to wear blue? Will blue lights in the Empire State Building, or on the Jesus statue in Rio, or the top of a pyramid in Egypt really mean anything?

Is this like a birthday party? Something we celebrate every year? Send up the blue balloons? Paint your face blue?

I found some of the World Awareness Day press curious: “In fact a world without Autism would be a lesser world.” New Zealand: United Nations declare day to celebrate autism

I think wearing black would send a better message. Autism Awareness should send a plea for action NOW. We need help and resources NOW.

So, the United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.

What causes Autism?

Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.

So the short answer is, who knows?

Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.

I recently read a study (2013) that blames the grandparents. They conceived the parents late in life.

Don’t you love scientists–probably funded with the autism awareness fundraising, eh?

Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.

Circular Logic

Parent: My child keeps flapping their hands.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child flaps their hands.

Is Autism the Greatest Gift?

Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.

Hummmm. Is that so?

Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?

Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?

Are we again caught in circular logic?

Parent: My child can count the number of nails or toothpicks.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child can count the number of nails or toothpicks.

There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.

I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?

The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.

Hurry, quick. Do we now need to give those persons the label of autism?

There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….

Couldn’t Temple Grandin and Donna Williams just talented people? Isn’t it demeaning to say, “No, the individual Temple Grandin has nothing to do with it, it is only because she has autism.”

Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”? The new figures are 1-50. One child in every fifty–and all we are doing is having Autism Awareness Day at the Philadelphia Zoo?

What is normal?

Well, turns out we don’t really know that either. Plus, we could say “normal” changes every year in every culture.

Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.

Multiple Intelligences| Howard Gardner

Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.

This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.

Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic? Are none of us “autistic” in the pure definition of wanting to be apart.

Stinkin’ Thinkin’

So, what’s the deal about autism? Can’t we just celebrate individual diversity?

If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?

I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…

Using circular logic:

Parent: I want my child to be happy.

Doctor: Children with Down syndrome are happy.

Parent: Then I want my child to have Down syndrome.

So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to every baby’s DNA.

If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.

This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….

Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?

The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.

We can love the individual–not the disability.

As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.

I can love my Aaron–I don’t have to love autism.

I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.

Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….

Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.

Autism sucks. Aaron doesn’t.

Autism affects each person differently.

In Aaron’s case, Autism means he can’t talk with words. It means he is 38 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he chews on his clothes and books and the car seats. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.

That all sucks.

I wish it was easier for him. I wish it were easier for me to help him.

But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.

Each day for the last 38 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.

There is a difference.

Dream Plans for Aaron Ulrich

I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.

I am NOT trying to make him the person I want him to be.

The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010.

Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He wants a new housemate, like his former housemate Jack who will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.

And until our dying breaths, we will do our best to make his life happy.

No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.

But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”

Yes, I can Love Aaron and Hate Autism.

Autism Awareness Day Marching On

Celebrate each wonderful individual person you meet in this video.

Keep Climbing: Onward and Upward.

All my best,

Mary

Comments:

Are you sitting there thinking, “how can this mother be an advocate for people with autism?” Do these words make you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?

Related Article:

Here is another article about Autism Awareness Day asking people to do more than just wear blue.

Autism Awareness Day| Direct Action is Better

Autism Awareness Day at the Opera

Autism Day at the Opera

April is Autism Awareness month. The United Nations General Assembly even designates a World Autism Awareness Day.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 43, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really?

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,


Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?

Supportive Living: What an inclusive day looks like.

A Good Day!

Aaron swimming

Aaron swimming

As the number of adults with autism and developmental disabilities rise, many professionals and parents ask me what I am looking for? Will I ever be satisfied? Is it just a pipedream or can we really build an inclusive community around a person with severe disabilities? Can there be a combination of natural supports and paid supports? Does the family have to do it all? Can an adult with autism have a decent quality of life and be happy?

They tell me it doesn’t really make any difference to Aaron, my son with severe disabilities and autism. Their logic says that since Aaron can’t talk, and therefore can’t complain, it is only the mother (me) who has these high standards and expectations and Aaron is just fine and the mother is well, you know, ….

Many times, they tell me how lucky we are… Aaron has a Medicaid Home and Community Based (HCBS) Waiver when there are thousands of people on the waiting lists; Aaron lives in a nice house close to his parents–not in an institution in another city….

The media is full of stories about desperate families of adults with autism and intellectual disabilities: abandon your child to get services — To the parents and professionals who want to give up or “re-institutionalize,” Can we prove inclusion in the community can work?

Many nights these tapes play in my head over-and-over keeping me awake. I ask myself what else I can do to make Aaron’s life more inclusive. I count my blessings.

We are lucky. We’ve worked hard to be where we are, but there is still much to do.

But last Sunday, I went to bed and smiled: “Today Aaron had a good day!”

We usually bring Aaron home with us on Sundays. Here is what this inclusive day looked like:

Aaron’s dad picked him up at 9:30 AM from his house. He talked with Kevin, Aaron’s long-time caregiver. Kevin knew when Aaron had had his last BM. Kevin had given Aaron his breakfast and he was dressed in his Sunday clothes—hair combed, shaved and teeth brushed. He looked like a typical 38 year old.

Aaron came to our house and immediately got his favorite books from the closet. His dad and I sat on couches near him in the living room. Aaron put his books on the coffee table where he turned the pages in two books at one time. When he wanted more books, he went to the closet, chose his books, and carried them to the table. (I know this doesn’t sound like a big deal but because of Aaron’s severe motor and balance issues, this is something we have worked on for years and years.) He also went to the fridge and when I ask if he wanted the pitcher of ice tea or the juice, he pointed to the ice tea.

When he got tired of the books, he went into the kitchen, sat at the kitchen table and we ate our spaghetti lunch together. Aaron put his dishes in the sink.

At approximately noon, Tommy and Isabella (Aaron’s brother and niece) came over. We all changed to our swimsuits, lathered up with sunscreen and walked to the pool at our condo.

Dad started with Aaron in the deep end and Tommy stayed close to Isabella with her floaties. Sometimes we were apart, sometimes we all played ball together and Isabella would swim between Uncle Aaron and Grandpa.

The other families each did their own thing, but we all crossed paths in a friendly community sort of way. There were about 8 other neighborhood kids and their parents in and out of the pool. They all said hello and though we didn’t really know any of these neighbors (it’s a big complex) they were friendly to Aaron and interacted as anyone would. I introduced myself, Tom, Aaron, Tommy and Isabella and hope we will see them again next week.

After about an hour or so, we headed back home, changed clothes and everyone had a drink and ate cheese and crackers.

Isabella wanted to play Hide and Seek in the house (her favorite place is under my desk) and Aaron and I would count to ten and then go and find her. Isabella loves to hide, but then she giggles so much it is easy to find her. Aaron enjoyed the game the first couple times, but then Isabella wanted more and more and so he just sat back on the couch with his books and watched.

About 4 o’clock, Tommy and Isabella left to meet Ana, her mom, who was getting off work; Tom, Aaron and I took a ride to the post office and grocery.

At 5:30 we took Aaron back to his house and Kevin and his wife were waiting for Aaron to take him to King’s Island, an amusement park. We took him to the bathroom, washed his face and hands, checked his shirt and hair and again exchanged some details about how Aaron likes the Octopus and train ride and …

Aaron got in their car and they were off for the evening. Tom and I went back home.

Too much to ask?

Now, I ask you… is this really so difficult to visualize?

If it was only paid staff, Aaron’s parents are dead or out-of-town, could the staff figure out how to fill up a weekend afternoon with some friendly faces and meaningful activities in the community?

Would Aaron be groomed and the staff person double-check his toileting schedule so he is comfortable? Would Aaron be in status-enhancing clothes that were clean and age-appropriate so he could blend into the community?

I know Kevin can do it, because he and his family have known Aaron for years. But I can’t understand why other staff don’t get it.

Aaron is currently between roommates, so right this minute, he has 1-1 staff. This is the best opportunity of his life for getting out into the community, when he gets a roommate it will be 1-2 people and much harder to take them out.

Focus on the positive

Today I have a reason to feel good about Aaron’s life. We all shared a pleasant summer day. Aaron and our family did what many other families were doing all over the city. Aaron was surrounded by people who love him and care about him. We celebrated his self-determination to make choices and do the activities he likes. Aaron used the skills he learned in his 22 years in school and therapy. Aaron had staff who were willing to try and give him a good time. Aaron was healthy and happy. I only saw him bite his hand one time all day. The activities were in his home community. There are future opportunities for building a network of long term support and acceptance.

And this is inclusion. This is our vision for Aaron. This is the future we hope for our son. This is all we are asking for. Carpe Diem!

COMMENTS

Come on, share what you are thinking. Am I being unreasonable to expect these kinds of days? Should I just accept “reality”? Do I just count my blessings? Do you have similar experiences? Should we go back- and re-institutionalize?

Keep Climbing: Onward and Upward
All my best,

Mary

Related Posts:

Aaron needs a roommate

Aaron’s Dream Plan #4

Going to the Family Reunion

Chocolate Covered Fun for All Ages and Abilities

Chocolate Covered Strawberries

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For the Holidays, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course if you want to go gourmet, hey, yum.

Partial Participation

Chocolate Covered Strawberries
Creative Commons License photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” *

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community-based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partially participate in every activity.

When Aaron is part of the group when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile 🙂

*Dr. Lou Brown, University of Wisconsin-Madison

Be Creative: Lots of Ideas

heart-crispies
Creative Commons License

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods of any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Age-Appropriate Activity

Activity for All Ages and Abilities

Things You Might Need:

Microwave-safe glass or measuring cups

Cooking spray

Bags white and dark chips (12 oz.)

Spoon

Pot Holders

Cookie Sheet

Wax paper

Bag of pretzel rods (12 oz.) or other food

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

All American Holiday

Gifts and Favors

Stick Pretzels

Paula Deen’s Christmas Pretzels

Halloween chocolate covered pretzels

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

It’s a Jungle Out There| Inclusion in the Grocery Store

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?