Archive for the ‘Caregivers’ Category
April is Autism Awareness Month. For those who are new to our community, I thought I would reprint this post because it talks about important issues. I hope you will feel free to share your thoughts in the comments.
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, 2013
This is the 6th year 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.
Roommate Needed in Mason, Ohio
Aaron is a great guy who likes other people. He is looking for a roommate.
Aaron is 38 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.
Aaron likes to go for walks, ride the exercise bike, swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community. He likes to be around other people.
He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece. His family only lives a couple miles away.
Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.
The ranch house is in Mason, near a local park. It is wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job. We hope he can live here for the rest of his life.
Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.
Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.
We would love for Aaron’s new roommate to be from the Mason community. We would love if another family would want to share all of our lives, so we could be a support to each other.
Aaron currently has staff who are loving and have known him for many years. They are part of our extended family and have hearts big enough to include another person.
If you know of someone who might be interested, please call me at 513-336-8271.
It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.
Aaron had the same roommate for 13 years. He and Jack are good friends and care about each other. Leaving Jack was one of the hardest parts about moving to a new county. Jack was a gentle man who was older than Aaron. They had their own hobbies and interests, but would go into the community together for shopping, large and small group activities and taking walks with their caregivers. Jack and Aaron had their own way of communicating and respected each other. We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.
Any suggestions greatly appreciated.
Keep Climbing: Onward and Upward
All my best,
Home Sweet Home
The house is a little ranch in a quiet neighborhood. Aaron and Jack each have their own room which is decorated with their favorite things. We remodeled the back half of the garage into a room where the staff could sleep and maintain an office. Aaron and Jack need a staff person with them at all times. I’ll talk more about the staff in another post.
The guys have a HUD rent subsidy so they only have to pay one third of their income in rent. The house is owned by a non-profit agency that does the maintenance. Thanks to Aaron’s Uncle Steve, we learned about HUD and were the first people in Ohio to access this source of funds. Some day I’ll tell you all the details about the craziness of applying, it involved five people using speed-dial and having to call between 10:00 AM and 10:30 on a specific day to secure the limited vouchers. It was a group effort, and when we got the application we felt like we had won the lottery. It takes parents and other caregivers a lot of effort to keep all the funding balls in the air, but with some creativity it can work.
Aaron and Jack have lived together for over 11 years. Jack has Down syndrome and is in his 50s and Aaron is 35 and has the label of autism. They get along great. They just seem to know what the other person wants or needs. Jack will pick up stuff if Aaron drops it, and Aaron just seems to know when Jack wants to be alone with his videos. It is pretty remarkable that even without verbal language, they just seem to have an understanding, their own system of communication. They don’t go in each other’s rooms–even if the door is open. They know their own chair and place at the kitchen table and they each have a job around the house. Jack loves to choose and pass out different seasonal placemats (this week’s have watermelons). Aaron’s job is to clear the coffee table in the living room and water the plants.
Aaron’s makes choices
Aaron’s favorite things to do are to listen to music, go swimming, go anywhere–he likes cars, buses, trains, planes… if it moves, Aaron likes it. We bring Aaron to our house every weekend so we can be a part of his life, and to give the staff a break.
When Aaron and Jack were first moving into the house, there was a huge lawsuit and neighbors across town were claiming that having people with disabilities would lower property values. Fortunately, Aaron and Jack’s neighbors have been wonderful. We planned a picnic last year for all of the people in Aaron’s day program and the family next door not only came to the party, they brought the potato salad and joined in the games. They have helped clear snow and would help in any emergency. We’ve watched the kids next door grow up and feel blessed to have them in our lives.
In November it will be two years ago since Aaron moved into a new home so he could live closer to my husband and myself. Aaron got a new residential company and new staff.
Jack stayed and got a new roommate though he did come to visit. When the residential company went bankrupt, his loving staff stayed with him for a while, but then moved on. The company that owned the house decided to sell it. So, Jack lost Aaron, his staff, his house and his security. Is it any surprise Jack’s health has suffered.
Next week, Aaron is going to try and visit Jack. There will always be a place for Jack in our hearts. He is a quiet, gentle man. There is no doubt, he and Aaron shared an important part of their lives. There is no doubt they loved each other and looked out for each other–just like a family.
Currently we are looking for a new roommate for Aaron. Jack lives in another county now, so he can’t join us. We meet a new man next week. Will he be someone who will be friends with Aaron. Can this new person be like Jack.
Keep Climbing: Onward and Upward
Balancing my life vs. my child’s: Until my dying breath…
This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!
I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.
Families make hard choices all the time
All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.
What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.
Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.
First Sign of Growing Old
I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.
BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.
I consciously chose my needs over my child’s.
I’ve had pain before, sure. But that has never stopped me, so why was this time different?
What was I thinking?
* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…
* Aaron goes every three months and didn’t have any major issues…
* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…
* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…
* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.
* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…
* Going to the doctor takes a full morning…
* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….
* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…
* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…
* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…
* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….
I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? But, like most people, I think our conscious run streams of pros and cons with every decision we make.
Second and Third Thoughts:
I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.
So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?
I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.
Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?
We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?
There is a huge difference between providing “care” and “caring”.
Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?
Keep Climbing: Onward and Upward
All my best,
http://climbingeverymountain.com/inclusion-for-moms-sisters-of-the-heart/ BTW: Lori Foster 2013 register now.