I love Aaron| I hate Autism
April 1st, 2013 | 
Author: 
Our Family 1980
Aaron at Piano 2011
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.
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.
Posted in Aaron, Adults with autism, Advocacy, Autism, Caregivers, community, Disability, Disability World, Inclusion, Parents, Parents of Adults with Disabilities, Teachers, Transformational Experiences, Ulrich Family | Tags: adults with autism, adults with disabilities, Anne Donnellan, autism, autistic adults, children with autism, Disability, hate autism, Howard Gardner, Mary E. Ulrich, Multiple Intelligence, parents of adults with autism, parents of children with autism, Rainman, Temple Grandin, united nation autism awareness day, What causes autism, World Autism Awareness Day
I was a bit confused after reading this post and still feel a mix of emotions. I understand you want to separate the individual from the disability or label and that makes total sense to me. At the same time, a disability is a huge part of an individual’s life. By saying that you hate autism or another trait of a human being, I feel like that is also saying that you hate a part of the individual. For example, I am a Christian. A huge part of my identity is found in the fact that I am a follower of Christ. If my mother were to say to me, “Leah, I love who you are, but I hate the fact you are a Christian”, I would be devastated. I want my mom to love me for everything I am, not just selective parts. I think that Autism Awareness Day is celebrating and accepting all parts of an individual. As well, it’s a great way to inform the public about autism.
Leah,
If I may I’d like to say that I think Mary hates the parts of autism that make life so very difficult for Aaron. I don’t think you can compare being a Christian with being autistic in this sense. Also being a Christian on your part is a choice you make as an independent adult. Autism isn’t a choice for Aaron. Maybe I’m wrong in my interpretation and Mary will correct me and clarify.
Alison Golden recently posted..Wake Up- It’s My Blogoversary!
Great points Alison. Leah, I hope this makes sense. It is a different perspective from many of the “Yea, autism is the best” folks. Maybe if Aaron made his living giving talks about his autism, I would see things differently. After all context is everything. I have tried to outline some of the issues we deal with in the posts on the “House of Cards 1, 2, 3″ and “Caregivers 1, 2.” If you have any other concerns email me privately at marye.ulrich1@gmail.com
Hi Leah, you bring up a big point. But being a Christian does not mean you have trouble walking, talking, moving around and have a decent quality of life. It does not mean you are discriminated against and kicked out of restaurants, movie theaters and … even churches.
Autism has forced me to not be able to work for money. Autism has denied me access to be with “normal friends” and community members. Autism has not allowed me to have a childcare for years –when Aaron was growing up.
Maybe I didn’t explain it well, but Autism has caused Aaron and our family much pain. I do not want to wish that on anyone.
Hi Leah. Looks like you got some responses to your comment, but I’ll go ahead and post mine anyway.
I see where you’re coming from with the Christian analogy, but I respectfully disagree. You chose to be a Christian, but autism isn’t something you choose. Let’s take choice out of the analogy. Say you’re hiking in the mountains and get caught in an avalanche. You come out of the experience alive, but lose the use of your legs. Then your mother might say to you, “I love who you are, but I hate avalanches. I hate the obstacles this has put in your way, but I celebrate the strength and courage with which you’ve faced them.” That’s what I think, anyway.
Well put Michelle. The avalanche analogy is great.
Leah, I am so thankful you brought up your concerns. Look at the great discussion you began. I’m hoping this helped because it is a complicated and difficult subject.
Normal is over-rated.
Hi Annie, glad you are here. Maybe I didn’t explain things very well. But “normal” means the ups and downs of life–like everyone else.
I get what you’re saying here. My son, Brendan, has Aspegers Syndrome. He is grown, lives in his own place. I recall his not talking as early as normally expected and taking him to speech therapy. He is now highly articulate.
Yet, his AS, as he calls it, gets in the way of ordinary life. There are things and situations that are more difficult for him than they would be without AS.
There may well be abilities he has that are heightened because of AS. But, it does get in the way. And I, as his dad, would that aspects of his life didn’t have to be so hard. So no, I don’t like that he has AS. He’s not too charmed that it gets in his way either.
He is who he is. And part of that is due to AS. But, I would prefer that some ordinary things he has to deal with would be easier for him. And they would be, without AS.
Would other things then be difficult? Yes, possibly. But that’s a hypothetical, his AS is real and present.
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Hi Kevin, thanks for your comment it may help some of our readers clear up their concerns.
It sounds like Brendan is doing well and adjusting to the ups and downs of life as a young adult. It would be interesting to hear him describe how AS gets in the way of his ordinary life. Brendan would be considered a success story and I’m sure it is because of the support he got from his parents.
Best wishes always.
Mary,
I see nothing wrong with saying you hate Autism. That you love your son is very evident from you writing and your pictures.When you say you love him, but hate Autism, you are not saying you don’t love a part of him. You are saying you hate the problem (and we don’t know what that problem is) that caused your child to be different. He is not Autism. He is a person with Autism. Big difference, and to hate something that causes our children to have disabilites is clearly a basis instinct. If a disease caused my child to be blind, I would hate that disease. If a disease caused my child to sicken or die, I would hate that disease and work to see it cured. Why must I love cancer because it has become a part of someone I love? No, I don’t think you are wrong to hate Autism. As a special education teacher I see the impact of this disability everyday and I can tell you, it is not a part of the child. It is something that has been visited upon the child that hinders them becoming all they might have been. Great post. Say hello to Aaron for me.
Scarlet from Georgia
I’ll give big hugs to Aaron for you. Thanks for your understand Scarlet. I thought you did a great job of explaining the point I was trying to make.
Mary,
I thought this was a brave, passionate post that could only be told by someone like you who has walked the walk.
Alison Golden recently posted..Wake Up- It’s My Blogoversary!
You are the best Alison. Much love.
I think your blog on loving Aaron but hating Autism had many good, strong, and debatable points. As important as it is to know that a persons disability makes them unique and the person that they are, I completely see where you wish it would be easier for him and for you to help as well. I also agree with you saying that the individual deserves the credit and talent but not the disability. If we had chosen to have a disability, maybe then it would be different. However it is not something we choose and disliking the effects is natural.
HI Rachel, What a terrific summary. Thanks, I hope it all makes sense.
I really really enjoyed reading this post as well as others that you’ve written. But this one in particular really caught my attention and opened my eyes to things that I’ve never realized before. Never before have I heard such a strong opinion from someone who is so close to someone with a disability. The point that really made an impression on me is when you talked about how unfortunately there are a lot of people out there who give the credit for someone’s amazing abilities or skills to a disability. I think that in the past i would have thought something like that and not even considered the other side of it. Its true that there are people with disabilities who have really special talents that set them apart, but I agree with you that we should give those PEOPLE the credit for their abilities. Its so important to love and care for someone with a disability just as they are, but its also important to see that person for who they are outside of their condition. Thank you for this post, i really enjoyed it.
Thanks Michelle. I’m glad that made sense.
Once a person rejects this “disability world” perspective and looks at things from a “normalization” or “inclusive” perspective–then everything changes.
Thanks for going beyond the surface and looking at your ideas and perspective.
I found your post about “I love Aaron, I hate autism” very interesting. My family has had a long history of many types of cancer and I remember my mom saying “I hate cancer!” many times throughout my childhood. We do not know what causes the cancer and so we fear it and hate it. I think that as humans we fear and hate what we do not understand. Even if I did understand where cancer came from and why it formed I think I would still hate it because of the pain and misery it causes it’s victims and it’s victims family. I do not think that there is anything wrong with you hating autism. We do not understand autism, but we see the effects of it and the people it effects.
Thanks,
Maria
Thanks Maria. I appreciate your thoughtful example and the empathy which came through. I hope you and your family are past the pain of cancer.
Dear Mary,
I really enjoyed your blog post about loving Aaron and hating autism. I used to babysit a little boy who is on the autism spectrum and this was my first experience with this disorder. Your blog really made me look at autism in a different light. I like how you point out that you can love your child unconditionally, but you don’t have to love something about them you can’t control. Although I do not have any children I can definitely understand your want to make everything easy for him and want him to live a “normal life.” I admire your courage and strength to speak about autism in a way others are too scared to do. By doing this I’m positive you are helping out someone who also is close to a person with a disability.
Thanks Maureen, everyone is not so understanding.
I think you make an important point. I do want him to have the opportunity to live a “normal life.” That is different than saying I want to make him different than who he is. He is a great guy, but who wouldn’t want to have things easier for their child?
I have always celebrated my son and believed he was a gift along with the Autism which has made us better people until recently…he is now 14 and going through puberty. Our life is getting harder and I totally agree with you…”I love my son so much that it hurts, the Autism is making it hurt”. He is so precious and dear to us but I worry everyday who will look after him when we are gone. Mary, thank you so much for your honesty and it is so refreshing to read your comments. Sending you all a huge hug.
Thanks for your comment Villi. Love is hard, isn’t it. All we can do about the future is try our best. That has to be good enough–it’s all we can do.
Hi Mary,
Very insightful blog post! I have never truly looked at Autism in this way. I think your opinions are very eyeopening. Coming from your perspective, it’s safe to say that you can absolutely love your son, but not love Autism. I don’t know what it’s like to have a loved one with Autism, but I can imagine that it requires much care and attention. Providing care and love for a son with Autism requires more than just care, attention, and patience I think. It’s about dedication to that person, and promising both to yourself and your son in your case, that you will accept them and love them despite what Autism does to your relationship. I know that it’s probably not an easy process, but I think you are right in what you are saying about loving your son, but hating Autism. Your blog post has made me see that you want to be able to love and care for your son well.
Thanks Whitney. It takes thoughtful people to understand.
I understand exactly what you’re saying. I don’t think there is anything wrong with hating autism because it has effect on the individual’s life and those around them. Just because you hate the disability or sickness doesn’t mean you necessarily hate that person. For instance, I hated cancer and still do for taking so many of my loved ones lives away. That doesn’t mean I hated the person, because although they were diagnosed w/ it, that isn’t who they were and are. It’s something that just happened to occur in their lives. As you mentioned in one of the posts there are so many characteristics and actions that they are that makes who they are, not necessarily to diagnosis. I think we forget that people with disabilities are still human and we should view them that way. It can be hard sometimes, I’ll admit, because it is something that many of us aren’t used to and it isn’t considered “normal”. But who’s to say what normal is? Just because something is dominant does it necessarily mean it’s normal? In the eyes of an individual with a disability the things that they do and the way they are may seem normal to them and in their eyes “normal” to us is probably just plain weird. Just a thought.
About 15 years ago there were buttons and tshirts with the “Why be normal?” slogan. Thanks for your comment Maurica, it is complicated isn’t it?
I hate autism. There has been nothing so vial, so despairing, so divisive, so shunning that I have witnessed in all my life.
My son is all the better for my having become the expert when there were none. No Tony Attwood or translator of this enigma could ever make it a thing to embrace, to love, to like, to tolerate.
It has stolen from my son, his brother, and me. It isolated us all. It left us on floors grasping for our lives in grocery stores, seeing only shoes pass by with no loving arms to offer help.
It opened car doors going 50 mph, hearts stopping, wheels screeching to halts, praying bodies were still live, moving, okay.
It flung baseball bats at little children, terrified of it, not knowing if it were joking or bent on killing them.
It stamped “not invited” on birthday invitations.
It put fear in the hearts of pregnant teachers who never before imagined a six-year-old could throw a desk so far and with such power.
It cleared entire gymnasiums and alerted 700 children of its danger… of getting near a cherubic, golden haired angel unaware… caught in its deadly grip.
And it stripped our family of all dignity time and time and time again.
Do I love my child? Absolutely, with all my body, my heart, my mind, my soul, my money, and my last breath. But when someone wishes to paint a pretty face on this horrific demonic devil of a “disorder,” they fool only themself… and never autism.
There are so many profiting from this scourge… never the children… who all become adults. But we don’t talk about the adults with autism, with asperger’s… some of whom most certainly do inflict pain on others, in typical repetitive, methodical, perserverative, verbally gouging fashions. Quite unbearably so…
No, I do not love autism, I am not thankful for autism, and most certainly do hate everything about it.
But I, like most who dare part ways with the proud autism poster child mommy clan, rarely speak of such things. It offends people’s sensitivities. How fortunate for them that their sensitivities are fully functioning.
Thank you for providing a venue for expressing something other than gratitude regarding autism. I am not thankful for autism. It is not a blessing. Autism blesses no one.
Happiness and joy and smiles and love and hope… are the only balms of humanity that autism cannot control. If it could, it surely would take that, too. Living day to day with autism… everything… life itself… can be up for grabs.
I thank God and our own resourcefulness for “surviving” autism. But I will hate it… always… until it dies a miserable death. There is no cancer as ravaging as taking a life, so many lives, and leaving it to poison so many other lives without ever, ever dying. There should be a high bounty for the hunter who can kill this wicked enigma… cold, dead, finished… and leave the living to live and grow and flourish. Until then, I still walk with autism… with living death… still just barely survive.
Just a feeling… but it should count.
Ellen
Wow Ellen. I’m not sure what to say. I’m sorry it is so hard.
You certainly share your frustration and passion with such vivid examples. And, you are right, there are few of us talking about the struggle and saying the politically uncorrect message that we love our child yet autism is not a blessing.
We “walk with autism” and have to survive and not make it a “living death” for our child or ourselves.
One of the best lessons I’ve learned is to look at my son’s behaviors as communication. From his perspective, asking “What is he trying to say?” Then, even the most bizarre behavior has a purpose.
My thoughts and prayers are with you and your family. They are also with all the other families who are trying to just make it one day at a time.
Wishing you every good blessing and a good person to provide respite.
With every thing which seems to be building within this specific area, a significant percentage of viewpoints are quite stimulating. In any event I did appreciate reading through it.
The new statistics are even higher. Now Autism is 1-50, even higher with boys. Glad you commented, it’s always a risk to put your ideas out there. I hope we learn the cause and cure for autism, but since the spectrum seems to be getting broader every day, I’m guessing the “cure” will be like getting a cure for cancer–Different for different people and decades in coming.
I hate autism too, Mary. I can’t understand why *anyone* would say that is not okay.
Alison Golden recently posted..5 Inspiring and Unconventional Personal Development Blogs You Should Read
Said like a mother. God Bless you Alison and your amazing boys.
Mary E. Ulrich recently posted..I love Aaron| I hate Autism
Hi Mary – Knowing you, I am well aware of SOME of the ways autism has shaped your life. I have no doubt about your love for Aaron – I’ve seen the proof of it over and over again. You are one of the most unselfish people I know, as well as one of the most caring and hardest working. The hard work, as you mentioned, is not the kind that adds to your bank account or gives your life stability. Instead, it’s the kind of hard work that ensures Aaron has a place to live, food to eat, and that forces you to drop everything to deal with crises most parents could never conceive of.
Autism doesn’t define Aaron, and if it were possible, I’m sure you would prefer Aaron didn’t have to deal with it. I would think any parent in the same position would want his child to have every opportunity available to him. Another commenter described it as an avalanche, and I think that’s an apt description.
Maybe it’s simplistic of me, but I don’t know why anyone would want to exalt autism. I have to wear reading glasses, but I don’t celebrate my poor vision, even though it’s definitely a part of me. Am I a bad person because I choose to correct my vision with reading glasses?
Okay, that’s imprecise, because you aren’t attempting to “correct” autism, you’re just trying to live with it, as best you can. More power to you!
Becke, you can tell you are a writer. You build your thoughts into a logical pyramid of ideas. Thanks, as always for your love and support.
This week the staff person who was supposed to work Saturday didn’t show up. So, they called us to fill in. Tom and I went to the house and learned the new guy had a prison record and tatoos all over his body. Geez, not exactly the kind of person who makes us think Aaron is safe and going to blend into the community. Thank heavens he didn’t show up.
Then, the furnace didn’t work.
So we spent 4 hours on Saturday and our usual 8 hours on Sunday just making sure Aaron had staff and getting the heater to work (the maintenance staff we wonderful to come on Easter morning).
I know, I know–there are some who think all we do is complain. But, geez. Not many people have to worry about toileting charts, staff with prison records (when he was a juvenile–he’s now 22) furnaces for their 38 year old son’s house… I’m not really complaining. It is just the way it is.
We had a lovely Easter dinner with the whole family. Aaron was great. I found some jeans with elastic waists and gave Aaron his favorite treats. It was nice to be all together.
It’s just the worries and the things outside our control and the foreverness of it.
“The foreverness of it” kind of says it all. For many – possibly most – parents, the hard times come in phases. Terrible twos, middle school angst, high school ups and downs, etc. It’s a whole different ball game with autism.
Don’t apologize for complaining – you’re entitled! Aaron is very lucky to have a mom who makes sure he is safe, healthy and happy. Even when you were in pain, in and out of the hospital, you made sure his needs came first.
You are awesome!
Becke Martin Davis recently posted..Brenda Novak’s Annual Auction Starts May 1st!
Thanks Becke, hope it helps others. Mary
Hi Mary – as always, a thought provoking and interesting perspective. I think having a day to celebrate autism is just part of how our culture figures things out – we’ve been trained to celebrate sales. I have to admit I’m glad each year for the reminder and to learn more about friends of mine who experience autism, and their families – each year it seems like the picture of what autism is becomes increasingly complete and founded in humanism rather than a reductive medical model. I can remember learning about autism as a teacher in training and thinking how scary it sounded, all revolving around a medical model transferred into a kind of pedagogy of needs and deficits, and that I hoped not to have any kids with autism in my class; twenty-five years and four foster-children with autism and many friends and acquaintances later . . . I feel quite differently. Do we really celebrate how Temple Grandin can count the nails necessary to fence a stockyard? I think more about how she uses her earnings to finance scholarships and works tirelessly to ensure children are included and challenged in all the right ways. Likewise, with our daughter, I don’t think so much about her hands flapping when she’s anxious as how she saves up her money to carefully purchase cards for people, or makes them, and how important it is for her not to forget anyone. Anyway, I think my plea would be for something more diverse than a celebration of autism (or Down Syndrome or…) – my son and many people I know have diagnoses that are so specific. A couple of years ago he had a problem at school and was trying to explain his challenges to the teacher who actually responded “Is it autism? I only know about autism. If it’s not autism I don’t care.” I don’t think that kind of response was the intention of a day for autism or the special autism team that comes into the school to do a de-mystification class with kids in inclusive classes. I LOVE that you are creating these new conversations and that you are so good at hosting them – it’s such a gift and I’m grateful as always to have discovered your life’s work. On another note, I’ve just gone through the planning you did over the decades for Aaron – wow, that’s quite a treasure. I’m going to be doing a webinar at the end of May on person-centered planning and am going to direct people to take a look. Aaron
Aaron Johannes recently posted..Vernon Inclusive Research Community Mapping Project Journal
Hi Aaron,
As always, YOU give me hope. You are doing amazing work. I only wish you were closer so we could work together. Plus, your name is Aaron:)
It’s good to know people are thoughtfully moving forward. We do know a lot more than 25 years ago. That is a good thing.
You and your children are creating the new future for the babies that are born today. We are building on work of hundreds of parents and advocates who laid the foundation. If my work can help even a little that gives me energy to continue.
Great website. Thank a lot for posting this. I’ll definitely come to this site to read more and inform my coworkers about this website.
I often wonder if Aaron could have benefited from a Paleo diet. We tried Feingold and many others and it is just exhausting to keep second guessing yourself. Thanks for joining us, I hope some of the article help you.