The Short Bus Diaries » Confessions About Life With an Autistic Son

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Category Archives: Advocacy

What I’ve Gained & Lost: Autism Awareness and Acceptance

So I clearly can’t speak for my son. I’m not even going to try. And since I have no idea what he thinks, other than when he is happy, sad, sleepy, hungry, or angry in a general sort of way, I am putting everything that follows within a bracket: I am not attempting to speak for […]

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Some Thoughts on the Social Contract

WARNING: THIS IS A LONG POST. But these thoughts have been simmering for a while, so I’ve had a chance to come up with a lot of material. 🙂 *********** So we really put ourselves out there when we sought out the Huffington Post to share our story (the local Washington Post apparently found nothing […]

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Being Honest Doesn’t Make Me a Terrible Person

So there’s a big kerfuffle/hullabaloo/blog-a-thon out there at the moment regarding Autism Speaks, its ongoing failures, and its recent call for action to fix/address/cure/prevent the autism crisis in American from spreading. First, I must confess that I don’t pay much attention to Autism Speaks or any major autism groups, whether they’re run by autistic advocates, […]

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jillsmo - November 15, 2013 - 6:42 pm

*highfive*

Speak your peace, sister. I got your back.

Julie Sparks - November 16, 2013 - 8:24 am

I love it, Jill. I’m sure you will get some nasty feedback, but you covered all MY favorite points. You love your son. You do not like his suffering. Autism Speaks has its issues, but a “cure” is not a crime. Your blog is your place to say your piece.

I hate the division that exists in the autism community over this and so many freaking trivial points. In accepting that we are all different can’t we accept our differences? Ah, another blog post ….

Happy Birthday to your son!

Laura - November 16, 2013 - 10:22 pm

Your Newsflash says it all for me. I adore my son and love him to the ends of the earth but if given the chance, heck, yeah, I’d take autism out of the equation. Why? To make his life easier. I hate to see him struggle on so many levels. I want him to have friends and participate in activities and understand social cues. Keep up the good fight. We’re all in this together.

Carlee - November 16, 2013 - 11:29 pm

You’re certainly entitled to hate autism and wish your kid wasn’t autistic. But there’s a risk that your son understands so much more than he “seems” to and there’s really no downside to “presuming competence” on his part.

Given the boy and the autism are one and the same (if for no reason other than there’s no way to separate the kid from the autism), you run the risk of your precious kid interpreting “I wish my kid wasn’t autistic” as “my mom doesn’t want or love me; what my mom really wants is a completely different kid. A non-autistic one”. And my heart breaks for the kid who feels mommy would 100% rather have a different child.

(There’s a great non-fiction book by Andrew Solomon called “Far From the Tree”, about parents raising kids that are unlike them. Kids with autism, dwarfism, Down syndrome, musical prodigies, etc. interestingly, the parents with kids with “stigmatized” differences — ie all kids in the book except musical prodigies, the Joshua Bells and Jay Greenbergs — very, very quickly see the silver lining to their disabled kid, while the parents/siblings of the prodigies have a much, much rougher road).

Lisa @ AutismWonderland - November 18, 2013 - 10:35 am

No judgement here. It’s hard. And as much as I love my son, just as he is…I’d be lying if I said there weren’t times when I wish things were different.

Shawn Weston - November 19, 2013 - 7:35 pm

Love your post. I tried to express the same feelings to my friends on FaceBook and felt like I was the only one who felt that way. Someone I was friends with actually said if Autism Speaks statement described my feelings then I should get therapy and learn to accept and love my son as he is. The things people say! Thanks for putting this out there!!!!

Maya Wechsler - November 19, 2013 - 7:48 pm

Shawn, you should kindly point them to this post and advise them to keep their opinions to themselves. 🙂

Jeannie - November 25, 2013 - 12:08 am

The only thing I really want to disagree with is the decision to keep him confined mostly to home. My daughter is “low functioning” autistic and I will not limit her world because other people may be irritated by her screaming, humming, beating, kicking, etc. if I take her to eat with the family in public. If it is a problem that a child with a disability may or may not cause a scene, it is the problem of the person observing, not mine. If my daughter throws a toy in Walmart while in the midst of a fit from being overstimulated, I do not care what some stranger watching thinks. I will not imprison her in our home because her behavior may bother a stranger who does not know what we have been through together. And the more I have exposed her to new experiences and new places, the better she is learning to cope with these experiences and the less intense the fits from over stimulation have become. My expectations for her may be higher than what she will ever reach, but when I stop expecting her to progress, she will. And I will be the last person to ever give up on her!

Nancy Leger - November 25, 2013 - 2:21 pm

I’ve just read my very own thoughts. 🙂

Anne - November 26, 2013 - 1:57 pm

A friend of mine just sent me to read this today and I’m glad I did. As I brace myself for an annual mandatory celebration (all celebrations are a test for me), she knew I would take comfort in someone seeing that not being autistic would be a better life.

I remember my friends from the Easter Seals camps – there were no disabilities that didn’t involve some suffering from time to time. A parent may certainly thank God that their child is alive, but you can’t deny that our lives include suffering. Our suffering becomes part of our existence as human beings – an undeniable piece of ourselves. Noone would wish this life for their child – I wish more parents would say that. Some of the garbage that my mother was told – that I was her cross to bear, that I was an inspiration, that there was a special place in Heaven for me – was just so unhelpful and didn’t feel truthful.

I’m now high functioning as an adult and was never as severe as your son, but I would much rather have been born without autism. I accept that my disability is part of who I am, it’s just that – acceptance of a condition that I have to manage every day, much in the way that someone with Type I diabetes has to carefully manage their condition. I have more decent days than bad ones. Sometimes I have a really good day. I have to remain vigilant. I have to be careful about doing everyday tasks like brushing my teeth in just the right way (a terrible combination of both motor skills and tactile issues). I have to be careful to make all my doctor appointments so that I remain a compliant patient who can live independently. I have to fight to look normal – not making a cry or rocking when someone puts a slice of turkey on my plate – because it makes other people nervous, which then makes me upset and nervous, and creates a horrid spiral downward.

I’m thankful that I’m in amazingly good shape by comparison to some of my peers. My mother fought to get me here – fought institutionalization in the ’70’s, tried radical therapies, became an expert, and never quit. I fought to get here. But it was just that – a fight, a struggle. At times she suffered while I was blissfully ignorant of her struggle on my behalf. Other times, I suffered as we tried some new therapy or a new teacher. Then there were the days we both suffered as I had a meltdown and banged my head over the available underwear selection now that I was in women’s sizes.

Honestly, I don’t think my mother or any mother wants their child to suffer. It’s OK to hate that your son suffers and to wish that it wasn’t so, for him or for other children. I wish that more people were willing to be honest about the complexity of emotions involved in parenting a child with a disability. It’s exhausting work and every good day is hard earned. You are clearly a fierce advocate for him and for your daughter and they are lucky to have you. I wish you all more good days.

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