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Those who have seen the video "Autism:The Musical" heard Lexy, a 13-year-old girl with autism, singing magnificently. Not long ago, she cut a couple of singles for itunes in support of the Miracle Project (the organization that runs the musical program for kids with autism). Listening to her, you'd never know she was autistic.
My son Tom, age 11, is diagnosed with PDD-NOS, a form of autism. Unlike other kids his age, Tom loves art museums. Not only does he walk through the galleries without complaining or fussing - he actively discusses the works of art, and gets excited when he sees a piece he knows. Walking through a museum with Tom, you'd never guess he was autistic.
Your child with autism may always be autistic, but there are places and circumstances in which it either doesn't matter - or in which your child's special talents make autism irrelevant. Whether it's at the beach, in the woods, at a concert, or creating a work of art - just for one day - go somewhere where autism doesn't matter.
Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.
Nice sentiment, but a seriously?
Everywhere we go, it goes with us. If you know of some places it can’t get in, I am all ears.
Hey, Ginger.
Of course I can’t climb into your shoes. But an awful lot of kids with autism seem to do very well in a quiet spot near water, where they can toss in some rocks, or just get their feet wet.
It doesn’t have to be a busy, public spot – and it doesn’t have to last all day long. But I, at least, have yet to meet a person who can’t be happy and relaxed SOMEwhere, under SOME circumstance.
And it seems like our kids on the spectrum are often surprising: just when you think you’re never going to have a breakthrough you suddenly hear a word, see an action (or DON’T hear a noise) and your realize they’ve gained a new skill. Even if it’s just ability to throw more than a foot, or blow a buhble – it’s an opportunity to feel proud.
Not trying to be a goodie two-shoes, here – just suggesting that taking a day away from the constant arguments and frustrations surround causes, treatments, therapists, IEPs and such just to enjoy your child can’t possibly be a bad thing.
Best,
Lisa (autism guide)
I am a proud parent everyday even when my girls delay when it travels with me.She is making gains and I am so happy.
It does follow a lot of places, but there are some places that your child is “one of the kids”.
For my son up until he was 10 (when he was too big to attend), it was Crash Crawlies…a blown up McDonald’s play centre. As a result, we had a lot of birthday parties there.
Other places are fairs with their rides, camping, swimming and hiking. We take hold of those times and although they don’t come anywhere near as often as we would like, we take those opportunities and celebrate them.
My son is on the “severe” end of the autism scale. He bolts, climbs everything in sight, has a severe tic disorder that effects his gross motor coordination leaving him at times not even able to walk.
I have worked with loads of kids on a wide range of the spectrum and relish the fact that I can encourage them to do the things they are convinced they cannot do. As long as one tries, they can do it…sometimes we need more help than others, but truly there is no such word as “can’t” unless you just don’t try.
As parents, we are trying every single day, and no one can say otherwise. We need to pass that message onto our kids. I have 4 special needs kids from severe learning disabilities to autism, and I reguse to allow them to say they can’t do something or we can’t do something because their disability gets in the way.
There never is a problem that doesn’t have an answer…it’s just sometimes we have to get more creative than we ever dreamed of to find it.
Cheers
Caroline
That is so strange! I JUST had this thought exactly yesterday AND it was during the time when we were having a family outing at the beach! My 5 year old was happily playing with the sand and muttering small sentences to himself about wanting to dig a hole and wanting to catch the sand crabs that I was saying to my husband, wow, times like these you really can’t tell that he is “different”. But at the same time the autism was still looming with me thinking “thank god for the therapy” that has caused him to improve and be the way he is now. The NEXT time this happens, I shall TRY MY BEST to put aside the fact that he has autism (it seems like such an impossible feat!) and just focus on him doing whatever he is doing simply as an adorable and delightful 5 year old boy which he simply is!
There are places certainly that autism just seems to be every where. Like the time I took my son to a candle party which I knew would be a mistake. My sister’s MIL wouldn’t leave my kid alone and the more he growled at her, the more she seemed to pester him. Well, he kicked her. Her nose went up in the air and she huffed off. My sister to this day loves that autism-moment. I on the other hand look at it as my son was giving the woman fair warning
A child doesn’t have to be all autism. There is some where in there a child. There have always seemed to be some days far worse than others. I wish this site had photo uploads. When my son was about 4 maybe 3, we took him on our boat for the first time. I was terrified to do this. My fear about kept us from even trying. I have a huge picture on my living room wall of my son on that boat. At that one minute of the day, his smile was that of any boy and autism was no where in sight. That one snap shot moment, he was any child, and maybe the child he most wanted to be. Now it lasted a moment, and we had since not taken him because we only had that great moment and the rest was quite miserable. I’d share the photo if I could and all might agree, that was a great moment and I keep it on my wall to remind myself life isn’t all autism, sometimes you can get simple moments of greatness and if all I ever got was a moment, I’d be taking it and running!
Autism isn’t on my mind always as we do things, more so it’s the specific issues we need to avoid or compromise in some way to make it better for us all. Even if we go some place and it was particularly hard, I am sure to let my son know he still did a pretty good job and I’d be proud of him, who has autism. Autism doesn’t have my son.
It’s all in the manner to look upon things.
I know that all “There are two kinds of people…”’s are over-simplifications, but here goes. There are two kinds of parents of autistic kids: 1) Those who love their kid, know there’s no ‘cure’ and are doing their best to live with it everyday, and 2) Those who love their kid but can’t deal with the facts and are always fighting angrily with the school district, suing doctors and always thinking of their child as “autism” incarnate.
I like to consider myself in the first category. Several times every day, my son and I aren’t “an aspie dad and his autistic son”, we’re just ourselves, laughing and loving, as is. But, as weird as I am, there are several times a day where I can’t figure out what’s going on with him and “Autism” has interposed its demonic head between he and I. I didn’t start it, and I can’t “quit” it.
On the other hand, I know lots of parents who keep the labels going when there’s no reason, it’s just their habit and shelter. I hope your post reaches them.
The times we are able to “quit” autism is when my son and I are outside, usually at the beach or the park. Yesterday, as it was a gorgeous day, I took him to a near-by park that borders the ocean. We played in the sand for an hour or so and walked the trails. It was a wonderful day for the both of us and a rare relaxing day for me. For those few hours, you wouldn’t know anything was different about my son.
I also struggle with “quitting autism.” A few weeks ago I took my son to the beach and he played in the sand and threw little pebbles into the lake. It was relaxing until he decided to run right into the water which is ice cold at this time of year.
my nephew is autistic (hyperactive) but goes really quiet when in the car looking out the window. It is as if he quiets down the movement inside himself when watching things move outside.
Dear Lisa,
Thank you for your beautiful article about “Quitting Autism for a Day,.” Thank you also for the beautiful mention of Lexi and The Miracle Project. As the mother of a child with autism, and the founder of The Miracle Project, http://www.themiracleproject.com, I so welcome your view of Looking at the Ability within the Disability. I have found children with autism to be some of the most extraordinary, sensitive, kind and magnificent human beings I have ever been privildeged to know. Yes, there are challenges – but there are also many gifts. As you so beautifully shared – when we join our children’s worlds rather than expect them to always adapt to ours – miracles can happen.
With gratitude,
Elaine Hall
“Coach E!”
Founder/Director
The Miracle Project
http://www.themiracleproject.com
Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.
I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.
I am, to use your words, “just a plain, ordinary, loving, proud parent.”
Every day.
I loved this . I try very hard not to use Rett Syndrome I tell people she is special. She is my daughter first no label.Or I love this one too, her label is she is a child of the King. My little Victoria is the love of my life and we celebrate everything she does and we do not dwell on what she isn’t able to do.She can do all things in her own way. thanks Vickie
We took my 11 year old son who has autism to a major league baseball game for the first time a few weeks ago. My husband and I were worried that he wouldn’t behave but my son surprised us!!
He traveled on the subway for an hour and a half, sat nicely during the whole game and enjoyed a chicken tenders lunch. I was so proud of him and happy that we could enjoy the game as a family.
Quit autism for a day? A delightful thought. BUT… I’d be lucky to get an hour and many parents I know are in the same boat. Autism is a pervasive developmental disorder and in our case it is pervasive.
My son is a wonderful painter but can I forget the autism when he is painting? No, because someone must be there nearly every second just in case he decides to toss his acrylic paint covered brush into a sink full of dishes or splashes paint all over the kitchen floor or just if he wants more paint (so he doesn’t try to dump the whole quart container in the small paint cup!)
It is a wonderful sentiment and there are brief moments where I can forget the autism, but the rest of the time, for our family it is Autism, business as usual.
We are a big family of 6. Noah, our special child, is our youngest and has now just turned 6. We have moments when we definitely forget about autism… mainly at the local Zoo. We are so grateful we have that Zoo! Our son has made HUGE progress this year- for which we are thankful. There’s a long way to go and we continue on. Most hours of most days, “autism” is huge: but there are times when we can forget about it and just “be.” Interesting article: THANKS!
I do not have a child with autism, but I volunteer in a class at my church that is for students with special needs. I got involved in it because a friend of mine that I grew up with in that church has a daughter with autism and she started the class. I just want to commend each of you that “deal” with autism every day. The parents that I know from the class are some of the strongest, most courageous individuals I have ever come across. It takes a “special” parent to raise a “special” child.
Right on!!! To Lisa, Val, Caroline, Elaine and all others who are fostering hope for the masses:-)
Quote: “when we join our children’s worlds rather than expect them to always adapt to ours – miracles can happen.”
What can I say…this statement is so beautiful and true. What a perfect way to state how wonderful our lives can be with our children.
I seldom read articles or posts about Autism because of the underlying negativity that I feel when reading them. Not often do I get to read posts from people that feel the way I do. People who experience the joy one can have when loving and living with a child diagnosed with Autism. Thank you all for this wonderful place of expression and hope.
To address the topic of discussion: Sometimes I forget my son is Autistic. It’s not the primary focus of our lives. We get throught the challenges of each day by trial and error and lots of giggles. There are times when challenges are more profound, but I work very hard to instill into my son that we all learn by trial and we all feel lost sometimes. That’s life and it doesn’t get more normal than that. So between the two of us we have learned several ways to cope as a family and as individuals. I guess that’s what makes it so easy to go anywhere or do anything without thinking of Autism. We simply acknowledge how we feel, select one of our many ways to cope and get back to the adventure.
I have a 12 yr old son with mild-moderate autism. He does speak, though seemingly winded. He was diagnosed by 2yrs old. When he started school, I kept him mainstreamed. He has acted out and I had developed a plan for him. He also loves golf, basketball, and music/dancing. I keep him with normal children for the simple fact he needs to know how to act from the ones his age; I can’t teach him that, nor can any teacher. These kids typically pose their own behaviors from what they see- i.e. if they only see children with autism, asberger’s or any other of the spectrum, what do you think they will do? The first form of learning is to do what you see for most of these (and normal) kids. I have found great success in my son’s education by keeping him mainstreamed in any part of life and think most parents should at least give it a try. However, I also think the parents are key to their successes. They need to be more involved- I have seen some just dart their children off (with whatever spectrum disorder they were diagnosed with) to school and expect these poor kids to just come home one day as if they were suddenly normal. It’s sad and there’s no excuse.
Hi~
Wouldn’t it be nice if we could leave our childs autism behind somewhere. Sometimes five minutes would be nice. But I agree, it follows us everywhere.
My son has a spitting issue. So it is difficult to go many places with him. We carry towels and try to make shopping a short experience, and that doesn’t always help.
Any suggestions on the spitting? We have tried a lot of things, even med’s. Also, he seems to like riding in the car and with the cost of gas it can be expensive. Any suggestions on an alternate activity? Send me an e-mail (bjhogard@hotmail.com)