“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planned for you? Not much.” – Jim Rohn
I will soon be celebrating my 66th Birthday. I used to think 66 was old. Now I just think 66 is experienced with a lot of living yet to do.
I wonder what the world will be like when Aaron, Tommy, Ana and even little Isabella turn 66? When I blow out my candles, I’m wishing with all my heart the world will be inclusive. And, we’ll all be part of a caring community who values diversity and individual contributions because together we are stronger.
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: 1989, Aaron was 14 years old and we were moving forward. The Plan was updated to take into account the changes in our family, but also the changes in special education, disability services and the world. (click here)
In Part 3: 1998 Aaron is 23 years old and moving out of his parent’s house into his own place with a roommate and 24 hour assistance from caregivers. (Click here)
In Part 4: 2016:
How did we do?
All Dream Plans were built on the concepts of family, community, normalization and inclusion.
Original 1981 Dream Plan for Aaron
Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.
Current 2010 Dream Plan for Aaron
Aaron was educated in a public school with his brother and the neighbors. After we won our lawsuit with Cincinnati Public Schools, the school district was vindictive and since Tom (Aaron and Tom’s father) was a teacher in the district we decided to move to Lakota School District. Aaron rode the bus to school with the neighborhood kids, he received a functional community based program with some excellent teachers and therapists who used best practice. His out-of-school activities evolved around his family and his own friends, interests and talents. Aaron went to the prom with his friend Jenni, he was on the Jr. High Track and Cross Country team where he earned school letters, he rode horses, swam, went to camp and took summer vacations with his family. He went to family reunions, holiday parties and the high school basketball and football games. He was on an inclusive bowling team and made some friends with the Baseball Team players. He was in the Key Club and had a circle of friends. He received extended school year services. He attended graduation (see related article) and had a celebration for all his family and friends. Aaron went to age-appropriate schools and had a job coach to help him in his job at the police station (vacuuming) and amusement park (watering plants) when he left school. When Aaron was 23 he moved into a house with another person (though he was older) and they have lived together for over 12 years. Aaron is still totally dependent but he has self-esteem and confidence in the things he does. He is loved and is a contributor to his family which now includes a niece and sister-in-law as well as his extended family of grandma and cousins. Aaron votes and is a consumer in our society.
Each one of these sentences is filled with years of work and advocacy. There are a whole lot of buts, buts, and more buts that happened when Aaron turned 21 that we didn’t foresee at age 6….
But considering the mountain we climbed to achieve all of the goals—WE DID IT!
1981 Dream Plan for Tommy
Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.
Current 2010 Dream Plan for Tommy
Tommy went to school with his brother and neighbors. He had a functional curriculum that met his needs. He participated in wrestling, theater, cross-country and track, he went to all the school functions. He was in age-appropriate settings and shadowed adults in careers he was interested in. He began a couple career directions and graduated from Morehead State University with a job in the telecommunications field. He is now a Radio Frequency Engineer working on the new G4 systems. His work experience includes setting up the telecommunications for the Super Bowl and NASCAR events. His bride, Ana, is from Brazil and now they have a baby girl who is 18 months old. Tommy sees Aaron and his extended family every week. He is remodeling his house with his friend. He has self-esteem and confidence in the things he does and is a contributor to his family, his extended family and society.
Tommy is on his own. He has his own responsibilities and we help him every way we can. He is interdependent only because he wants to be. Now he makes his own dream plans for himself and his family. Here is a related article about Tommy and Aaron (Click here)
Aaron… well another post we’ll talk about life after age 22 and adult services.
How are Aaron and Tommy’s dream plans different? At age 6 and age 22 and age 35? age 66? How did they turn out? Were they much different than the plans your parents made for you? Much different than you make for yourself? What would you say is the lesson?
Keep Climbing: Onward and Upward
All the best,
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.
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.
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.
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,
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?
Here is another article about Autism Awareness Day asking people to do more than just wear blue.
The Race Toward Inclusion| Do you see it?
I love this picture. It reminds me of many of my favorite quotes:
“The real voyage of discovery is not in seeking new lands, but in seeing with new eyes.” Proust
“No one’s blinder, than s/he who will not see.” Kenny Rodgers’ song
“The race is not only to the swift, but to s/he who keeps on running.” (unknown)
“It is only with the heart that one can see rightly; what is essential is invisible to the eye.” Antoine de Saint-Exupéry
Eyeballs Running Everywhere
The racing eyeballs also remind me of late at night, lying in bed when my thoughts just keep galloping around in my head.
Our world is filled with a myriad of choices, distractions, good and bad news–all begging for our eyeballs and attention.
Parents of typical kids have trouble sorting out their priorities, and much of their intense parenting ends when their kids are 21. For parents of kids with disabilities, our hardest years are after graduation.
We are supposed to be experts on everything, autism, intellectual disabilities, developmental disabilities, govenment laws and departments on local, state and federal levels, advocacy organizations….
We are supposed to visualize our future, our children’s future.
We are supposed to foresee what will happen, so we can be prepared to protect our vulnerable children.
It makes me dizzy.
I want my bloodshot eyeballs to stop racing around trying to keep up. I want to be able to look forward to a future where my son will be okay. I want to be able to trust the professionals to do their jobs…I want to sleep in peace–(well, not the eternal kind of peace, just restful, you know sleeping through one or two nights 🙂
What about you?
Can you see the good–and ignore the distractions of failed levies, government cutbacks, negative news?
Can you watch the media focus on new segregated programs and ignore inclusive programs?
Can you envision new inclusive services in the community?
Can you discover hopeful ideas and events?
Can you anticipate next week being better? Next month? Next year? 10 years from now?
Can you believe you will have the people and resources you need?
Do you also feel dizzy?
We need to narrow our focus and concentrate on “the essential”: What can we do today to move toward the inclusion of our children in society?
We can’t solve all the issues of the world. But we can exercise the Power of One and do one thing today to make a more inclusive world for the person we care about. One thing. Today.
But how do we decide on that one thing? How do we filter out all the choices?
Just like a gardener or farmer prunes the dead wood from a rose bush or apple tree, we need to teach ourselves to prune the information that bombards us everyday. We can make the choice to throw out some information, ignoring potential goldmines. If it is really a goldmine–it will still be there tomorrow. I do this by limiting the time I spend watching TV, the news, using social media like Twitter and Facebook. I don’t care what Brad Pitt is doing, I don’t want to hear about recent car wrecks, abused children, or floods in Asia. I can’t do anything about it. If it is bad, scary, if it is going to keep my eyeballs busy while I am trying to sleep–I prune it out. The world can move on without me.
Planned ignoring is consciously making a decision to ignore certain things. Planned Ignoring gives me time to digest and analyze the information I already know. We need to allow ourselves to “see” and “not see” as we make our priorities. This will help us reduce the overwhelm. We can stop the racing eyeballs in our minds. We can allow ourselves the luxury of closing our eyes for a moment, and find our FOCUS.
Seeing with New Eyes of Inclusion
Long ago, I decided my “voyage of discovery” was to the land of inclusion. It meant learning new ideas, shifting my paradigm, and it is based on the principle of normalization, I want my son Aaron to have as normal a life as possible (period). I can make a difference for him by seeing with my new eyes of inclusion.
What do I see? What does my loved one see?
Is this moving toward inclusion?
I have to live in the real world, so I compromise a lot. But I try to keep my vision focused on the goal: Inclusion for Aaron and others. For instance, yesterday I again had a discussion about filling out a form when we picked Aaron up at his house. Because of the principles of inclusion and normalization, I will still make up my own form, rather than use the medical model form from the agency. Six month ago I was promised this would be changed, but Herbie still lives. Herbie bits the dust“>Click here.
When I first confronted the agency six months ago, I was using “pruning.” I would chop out the old policy. I made phone calls, was given assurances that it would be changed.
For the last five months, I’ve used “planned ignoring”. I kept hoping they would keep their promise to change the form. I kept signing the form I made myself. (The house staff was also using planned ignoring–and just let me do my thing.)
But now, it’s time to use my “new eyes” and make one change as we journey into our annual ISP (Individualized Service Plan–the adult service version of the IEP only without the due process).
I’m predicting: The EYES will have it!
Sweet Dreams Everyone.
Keep Climbing: Onward and Upward
All my best
What do your eyeballs see? What is your vision for the future? Do you think the concepts of “pruning,” “planned ignoring” and “seeing with new eyes” are useful strategies? Are some people incapable of “seeing”?
In the post: Caring Community| People First Language we talked about the power of labels, negative stereotypes and the paradigm shift of looking at all people as PEOPLE First!
Today, on Valentine’s Day, I am asking you to think about how you use words:
Do my words cause Heartaches?
Do my words cause Heartsongs?
What are you doing?
WHAT are you doing?
What ARE you doing?
What are YOU doing?
WHAT THE HELL ARE YOU DOING!!!!
The same words can be said in anger or with gentle concern.
The speaker, the listener, the context of the communication, as well as the intent all make a difference.
Parents, Teachers, Coworkers, Friends, Enemies… We have all been misunderstood and misinterpreted. We have all wished we could swallow what came out of our mouths–take back our words. We have all been both aggressors and victims and have given heartaches as well as heartsongs.
HEARTACHES: “What’s that mess on your shirt?”
HEARTSONGS: “I see you have paint on your shirt.”
HEARTSONGS: “Let’s talk about this before you decide.”
HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
In the comment section, let’s share some ideas on how you could make each of the following examples into either a heartache, or a heartsong?
Scenarios: Heartaches or Heartsongs.
1. Sara is eating breakfast. The bus is coming in 5 minutes. She spills her juice while reaching for the cereal.
What could you say that would cause a heartache?
What could you say that would cause a heartsong?
2. Ken wants to help his friend wash the car. He accidentally squirts him with the hose.
What could you say that could cause a heartache?
What could you say that could cause a heartsong?
3. Emily comes home from work. When asked about her day, she begins to cry and says, “Jim doesn’t like me.”
What could you say that could cause a heartache?
What could you say that could cause a heartsong?
By speaking with your heart, you may be able to bring out the very best in people. Give them a chance to talk. Listen patiently.
And of course, there is always the quote: “I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” But we’ll save that for another post.
I’m wishing you a day filled with heartsongs. May you have many opportunities to give them and to receive them. Spread the love.
Keep Climbing: Onward and Upward
All my love,
Do you have any examples of heartaches, heartsongs?
Heartaches turned into heartsongs?
Use the examples above, or share some from your own experiences.
Adapted from Project Prepare, Ohio (1995)