Last month while browsing through Facebook, I came across a letter that is being forwarded around the net. It was posted in one of the groups that I frequent. The letter has been credited to someone named Melinda Hawkins and it reads thusly:
Dear Autism, Because of you I have never known a day of normal parenting. Because of you my children will never know a normal day, or be able to interpret their surroundings correctly.
Because of you, the world can be a scary place to them, and to me. I worry all the time, about the next melt down, the next anxiety attack, or screaming tantrum that makes every parent in a store turn and look my direction. I worry my children will never have a normal life, a normal career, a normal anything.
Despite that, you still don’t DEFINE my children. You don’t have control, and despite the countless hours of therapy, intervention, extra time chasing down teachers, IEP, and researching more ways to help them, you still won’t win. The things we have been through make us stronger our house is full of love.
Because of great doctors, and specialists, we are able to communicate, understand, find interventions we need. It’s not a normal life but by all means, it’s still a good one.
I’m thankful you are Autism instead of Cancer, or the many other conditions that could be considered worse. Autism, you have taught us how to be more patient, you have taught me how to love stronger, how to be smarter, how to be more resourceful as a parent. You’ve taught me to educate, to advocate, to stand up for what I believe in (my kids). You’ve taught me to be more understanding of other parents, to fight harder, to be there more, to have more faith.
Because of you, I’m better as a parent. I pay attention more. I worry more. I’m more involved because I need to be, not just because I want to be. So thanks, Autism. because my kids are worth the fight.
As I stated in the opening paragraph, the letter is attributed to a Melinda Hawkins. I’d like to respond to the contents of Ms. Hawkins’ letter and share my thoughts on the subject.
I found the letter very offensive and I posted to that effect on the Wall of the group where I first saw it posted. I’d like to post at length on the letter here … not to Melinda Hawkins, or to any person in particular. This response will be a letter that I am sending “into the void.”
“Dear Autism, Because of you I have never known a day of normal parenting.”
What is normal parenting? Is there a blanket method of parenting that can cover all kids? I don’t think so. If we assume that part of the problems we see in society (drug and alcohol dependence, criminal behavior, etc.) can be attributed to one’s upbringing, can we say that a “tried and true” method of parenting worked for any of these people if in fact such parenting tactics were employed? How many kids, autistic or non-autistic, grow up to be unsuccessful adults?
My point is that every child is different and every child requires a different kind of parenting. If we pigeonhole kids, we turn them into robots, making them into things they may not want to be.
“Because of you my children will never know a normal day, or be able to interpret their surroundings correctly.”
Every day is different for everyone. “Normal” is a relative term. What is normal to you may not be normal to me. And what is the “correct” way to interpret surroundings? Autistics can cause people to see the world in beautiful new ways, especially the ones who have hypersensitivities, hyposensitivities, and synaesthesia.
“Because of you, the world can be a scary place to them, and to me.”
Autistics see the world as it is, perhaps because they do not have the “blinders” that other people have. The world IS a scary place. It’s full of loud noises, rude people. Thieves, rapists, and criminals. That autistics cannot shut these things out of their minds is a credit to them, because many of those try to change the world to make it a better place.
“I worry all the time, about the next melt down, the next anxiety attack, or screaming tantrum that makes every parent in a store turn and look my direction.”
I’m sorry if autistics embarrass you, but I am equally sorry if you cannot understand what things might cause autistics to melt down. Stroboscopic lights, obnoxious people who bully autistics even as parents and teachers tell autistics to “be nice”, people who think “little white lies” are not lies, etc., all upset autistics. Why? Because anything that hurts the brain cannot be healthy.
Anyone who refuses to stop bullying when they see it is a complicit bully, and therefore dangerous. Anyone who lies — no matter how “white” that lie is — must be a liar.
“I worry my children will never have a normal life, a normal career, a normal anything.”
All parents have this fear. The thing is, when you accepted the responsibility of being a parent, you also accepted the possibility that you would have to care for your child for the duration of your life. Whether you were consciously aware of this agreement or not is irrelevant. You have no excuse. There were other parents with other children — other special needs children — for you to look at and think over before you became a parent — a special needs parent — yourself.
“Despite that, you still don’t DEFINE my children.”
Autism defines your child, and the sooner you accept that, the better. How would you define yourself on a dating website? If you are a woman, you might say, “I am a tall, blonde, blue-eyed executive at a consulting firm.” Any of the adjectives in that sentence define you. Because the word “autistic” is an adjective, it defines anyone who is autistic.
“You don’t have control, and despite the countless hours of therapy, intervention, extra time chasing down teachers, IEP, and researching more ways to help them, you still won’t win.”
Well, I hate to tell you this, but you are only half-right. What if I told you I don’t like your eye-color? What could I do to change that? I could make you wear dark glasses, or colored contact lenses. But underneath the dark glasses or colored contact lenses, your real eye color would still be there … unless I gouged out your eyes. At present, you cannot gouge out your child’s autism.
You CAN subject your child to the same sorts of disciplinary methods that B.F. Skinner used on lab rats. You know the ones I mean? The ones Lovaas, the founder of Applied Behavior Analysis used to control what he called “little monsters.” The word “monsters” was Lovaas’ words for autistics and certainly not a word that I would use to describe a child much less a child with autism. But autistics will retain their autism, and do you know what seems to work very well with autistics? Loving them the way they are, rather than trying to shape them into your personal ideal.
If you are a woman, do you resent the fact that society wants you to have a Barbie doll figure? If you are a man, do you resent the commercials that suggest women won’t like you because you are “small?” Then why is it okay to change your autistic kids? Don’t you think they get the message that you don’t like them the way they are? Just think how much they have to go through, trying to change to meet your expectations.
“The things we have been through make us stronger our house is full of love.”
Really? What kind of love is it when someone says “I love you, BUT … ?”
“Because of great doctors, and specialists, we are able to communicate, understand, find interventions we need.”
One thing it might help for people to realize is that there is an assumption being made here. The assumption is that autistics don’t try to communicate. To communicate with a deaf person, we use sign language. If we want to impart a written message to a blind person, we give them a letter written in Braille.
But if some people want to communicate with an autistic person, they subject them to therapy and “beat the autistic” out of them until they pay attention. And then they thank the people and programs which made that possible. What is it that makes an autistic a second class citizen in some people’s eyes? “It’s not a normal life but by all means, it’s still a good one.” Glad we agree.
“I’m thankful you are Autism instead of Cancer, or the many other conditions that could be considered worse.”
So am I. Cancer cannot be worked with and needs to be cured. Autistics CAN be worked with; this is not about a cure.
“Autism, you have taught us how to be more patient, you have taught me how to love stronger, how to be smarter, how to be more resourceful as a parent. You’ve taught me to educate, to advocate, to stand up for what I believe in (my kids). You’ve taught me to be more understanding of other parents, to fight harder, to be there more, to have more faith. Because of you, I’m better as a parent. I pay attention more. I worry more. I’m more involved because I need to be, not just because I want to be. So thanks, Autism. because my kids are worth the fight.”
It’s good that autism taught you this lesson. Just think of what kind of parent you would be if you had never had a child with autism.
Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO
January 30, 2012 at 4:38 AM
What an interesting summation; and one that deserves an equally thoughtful response.
I can understand why you found the letter to be offensive as it depends very much on what you read into it in terms of why it was written and interpretations of the points the writer made.
I could find your response equally offensive as you might appear to have set out to read every possible negative nuance that you could find.
I read the letter and had a very different appreciation of the writer’s intentions.
Your response seems to suffer from the same kind of intolerance shewn by NTs for us (those on the spectrum).
The writer’s choice of terms upsets you but for many they are how they think. I took the letter as someone’s attempt to try and encompass those that use such terms and think in those ways because they know no better.
She has tried to show a positive side and to deal with those feelings with understanding.
Most people have an idea, a perception, of what ‘normal’ parenting is and the sort of challenges it brings. Then when faced with autism they are faced with something much more challenging.
She has then gone on to give a new perspective for those who doubt and have only a negative perspective. She is trying to show that with the right ‘expert’ help much is possible.
In summary I see it as a letter to help those who are depressed by the prospect of a life-time commitment to their disabled children to see that there is a better perspective, that does have challenges yet they are ones that can be dealt with and that there are many positive sides to it too.
It all depends how one reads it.
January 30, 2012 at 3:44 PM
I see it two ways.. one with a NT ,who, like many today , lack parenting skills, thinking babies are born like Barbie Dolls in a box…. in the end, Through expensive doctors, tax dollars and agencies, she grew up and learned to be a real parent and it took something like Autism to educate her on how to be a parent. Where were her mom and dad??? No.2. She is typical ignorance that shows prejudicy in the world which thrives on lies and lack of character too look perfect, due to insecurity, ignorance, self centeredness, and our society has done NADA, NIX, NOTHING to teach the next generation how to be a parent and not a doll collector. Why is it, Autism has to teach something, that society should have been taught by their fellow humanoids? It is a mixed bag message indeed and demonstrates a lot about society today, parents today, people today, and the trouble we are in for future generations… Positive side.. She learned, tooo many do not. I am curious about HER upbringing and life as a child and her parents family life. It usually comes from the home.
January 30, 2012 at 3:46 PM
A message is sent by God with the stork who delivers your baby. “I beg your pardon, I never promised you a Rose Garden. Along with the sunshine, there comes a little rain sometimes”
April 23, 2012 at 3:20 AM
Surprisingly (or not so surprisingly, if one reads what is actually written in the letter quoted above, directly based from the usage of the author’s word choices) I agree with Mr. Taylor’s summation and response posted above.
One thing I will always thank my parents for is the unconditional love they showed me growing up. I did not receive “interventions” and I did become a success until physical (non-autism related) disabilities sidelined me from the working force. I am so “un-autistic” at times today that many associates do not see my autism at all. Those who spend more time with me do however see my moments. I was called weird, unique, different, marches to the beat of her own drummer, etc. and it was said with love and admiration. Difference and uniqueness was treasured in my childhood homes. They didn’t do anything special to get me outside my world, they just parented me the same as my siblings, as any “normal” parent would. Of course, they didn’t believe in my diagnosis (or ANY psychological diagnoses as they dismissed the science as “bunk” as a whole). But if I needed to spend 30 minutes to make a five minute walk to the bus stop because I had to stop and think about the things I was seeing along the way, they made sure I was ready in plenty of time to make that 30 minute walk. If I needed extra help practicing my printing and handwriting, they gave it to me, sitting there with me. If they had to repeat an instruction 30 times before and during my commencement of that instruction, they did that too. If I needed to spend four months of daily practice (for hours at a time) to learn how to tie my shoes, they did that too. And if next year, I suddenly forgot how to tie my shoes, they’d do it all over again. Without ONE complaint.
Not once did I hear them say they were fighting me. Not once did they say they were going to “beat” (not physical but as in competitions) me and win. Not once did I hear them say I wouldn’t win. You see, they didn’t see me (or my autism which does define me to an extent, the same extent as woman, redhead, and freckled defines me) as something they were up against… but were up for. I think that’s normal parenting… isn’t it?
No, my parents are not saints. Yes, they had tons of patience. But most importantly, they had love for me. Mr. Taylor is correct when he states that whether a parent knows it or not, a parent makes a covenant with their child (upon conception or birth, depending on one’s views). That covenant encompasses so much but including a lifetime commitment to that child. Even a “normal” child still needs his or her parents’ love after the age 18. Why wouldn’t an autistic child need that as well? And if one loves a child, taking care of that child is included in the definition of the word love, when used as a verb. Yes? Or am I wrong?
I still talk with my father daily, except when he is on vacation or has company visiting his home (such as my nieces and nephews) and on Saturdays when he spends the day out. He still helps me in various ways that most grown children without developmental issues and disabilities would not typically have from their parents (such as advising me on monthly financial matters). But you would never hear my father say “I have never had a normal day of parenting.” And you would never hear me say “I have never had a normal day.” This is because normal is all relative. Normal is only a dot on spectrum representing data, somewhere along the middle where most of the data falls. In relation to the outlyer, X is normal. So my days are shaped a certain way and follow a set routine for the most part, with a few exceptions and unplanned contingencies. THIS is my normal. The fact that it may not be normal to this other person does not take away from the normalcy of my life or person. Or my children’s.
Yes, I can see why one would find this letter offensive indeed.