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

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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


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.

Dear Woman at the Park

I was informed this morning by my husband that another mother in our neighborhood – even though she had never met me or even communicated with me via email – did not consider hiring me as a photographer because she thinks I’m “so negative”.  What follows is a lengthy explanation of who I am, if […]

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Adrienne - February 4, 2013 - 8:18 pm

Well said. You’re kicking ass and taking names and it’s HARD. I’ve been hit with those: you’re so negative; look on the bright side; just enjoy your son! Gag. My kid’s prognosis is lousy and I reserve the right to hate it and to struggle when I need to struggle. But people don’t understand, and worse are the ones who don’t try to understand. Worst of all are the people who judge.

Patty - February 4, 2013 - 9:25 pm

That anonymous woman, in my opinion, is the one who is negative. After all, she is judging you, someone she barely knows, instead of getting to know you. This is a terrific post. So honest and raw and spot on.

Debby - February 5, 2013 - 7:27 am

Aren’t we lucky that we are typically spared interaction with people such as this? Because we don’t have time to judge others’ lives even if we wanted to. Love…

Sunday Stilwell - February 5, 2013 - 7:30 am

I have run into this issue MANY times. I think as an autism parent we all do and I wish that made it easier to stomach.

It doesn’t.

I get tired of feeling like I have to educate the world around me. To make them bend to accept my sons for who they are.

You keep doing what you have to do and don’t ever apologize for it.

Also, let’s have a playdate SOON. Please.

Dorie Howell - February 5, 2013 - 12:50 pm

First of all, that is not a woman anyone would want as a client. So no love lost there. Let her find her “positive” photographer that will give her warm and fuzzies and also mediocre images. You are doing great under the mantle you wear every single day.

Elaine - February 5, 2013 - 3:27 pm

I only met you in person once – when you gave an incredible amount of information in a condensed period of time on photography. I could tell you were nervous about something going on in your home, but even with whatever must have been going on – you were awesome. And your images are awesome. And it is so unfair that someone thinks they can judge you. I wish we could all operate under the framework that every other mom / person / business owner / child is doing the best they can. It shouldn’t be this hard. I hope the world becomes a more accepting place.

K - March 1, 2013 - 4:16 pm

To negative is offering an opinion of your business/ you to your husband while he’s on a family outing. Who does that? It’s pretty hard to think of a socially acceptable context.

Mom-In-A-Million - The Invisible Boy - March 11, 2013 - 9:34 pm

[…] about sitting there with his arms and legs resting on the rope relaxes him and quells the constant stimulus seeking activity that keeps his parents on their toes lest he break something or hurt himself or steal food off a […]

Ellen - March 14, 2013 - 2:53 pm

If you have never met her and never even communicated with her, why do you care so much about what she thinks?

I’m a small business owner, and people choose not to hire me for all sorts of reasons, some reasonable, some completely stupid. It comes with the territory. Some people will like me, some people won’t. That’s just the way it is. It’s a waste of time and energy to obsess over these things.

Maya - March 14, 2013 - 3:00 pm

I actually haven’t been obsessing about this woman, and that wasn’t really what I was getting at, but perhaps failed to successfully convey. The imaginary conversation I had with this woman is a stand-in for what I would say to anybody who has ever judged me as being too negative, whether it’s in a business context or otherwise. In fact, when people ask me how I am, I wish it was appropriate to tell them how I really am, and how my day is really going, because oftentimes I’m having a hard time. But for the most part, people just want to see the nice stuff, hear pleasantries, and not dig too deep into what special needs parenting is really like. In contrast, if all of us special needs parents had the guts to really tell people the truth, it would likely make the other person feel very uncomfortable, either because they really don’t want to know or because they have no idea what to say in response. So this is me, responding like I wish I really could, when similar situations arise [that have little or nothing to do with business].

[…] son’s “version” of autism, as I’ve mentioned previously, is not a small part of who he is. It’s pretty much everything–at least right now. I […]

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