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

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Yearly Archives: 2013

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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My Boy is Super

As I’ve mentioned previously, it’s not always easy to get great images of my son, despite the fact that I am a photographer, and–more importantly–in spite of his beauty. Yup, I said it. He is a beautiful little boy. His face may be scratched up (he’s kind of rough and tumble and has a very, […]

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Julie Sparks - December 13, 2013 - 4:30 pm

He’s beautiful and so are the pictures! He obviously liked wearing the costume and being outdoors!

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.

To My Daughter

Dear Baby D, Before I knew who you would become, I somehow selected the perfect middle name for you: Grace*. You are filled with it, even though you do not yet know this. Last week one night, while your brother raged, attempted to bite your Mommy and Daddy’s faces, pull our hair, and throw everything […]

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Maca - October 2, 2013 - 1:44 pm

This post makes it easy to fall in love with your daughter, even though I’ve never met her. Stay you, D.

Andrea - October 2, 2013 - 2:05 pm

What beautiful piece! Lovely Tribute to your daughter 🙂

Jo - October 2, 2013 - 6:47 pm

What a wonderful tribute to a little girl who’s filled with more grace than most adults.

And the photos. Be still my heart.

Why I Will Never Join the PTA

This is why you will rarely see a special needs parent step up to manage a school auction. And yes, I actually sat down this morning, after opening up my inbox to discover my second piece of bad news for the day (more legal details to come) and shared all of these details with a […]

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Mary O - August 20, 2013 - 1:35 pm

Hi Maya,

We are special needs parents on a similar journey.
I’m so impressed with your strength & persistence.
Could I ask a question? What software do you use to track your
insurance, claims, EOBs, and Medicaid filings?
I’m deep in the dirt over that!

Kaylee - August 29, 2013 - 1:39 pm

Wouldn’t it have been easier to simply stay on top the paperwork, submit the renewal materials as required and NOT have to grovel to get it reinstated?

Jessica - August 29, 2013 - 1:57 pm

Kaylee: of course that would have been simpler. But we all make mistakes. And with special needs kids we’re overwhelmed and tend to make them more often than the average bear.

Jennie B - August 29, 2013 - 2:46 pm

Kaylee, have you never forgotten anything, misplaced something, missed a deadline? Never? Well, life happens, and life with a special needs child, is incredibly hectic. Of course, it would have been easier to just re-enroll. But it wasn’t on purpose and in these cases, a little compassion goes a long way.

Jo Ashline - August 29, 2013 - 4:50 pm

Kaylee: Wouldn’t it be easier if cancer could be cured with Advil? Wouldn’t it be easier if pedophiles didn’t exist? Wouldn’t it be easier if people commenting on blog posts written by honest, tired, frustrated parents who needed to be lifted up weren’t commented on by sanctimonious asshats?

Lay off lady.

jillsmo - August 29, 2013 - 7:04 pm

Wouldn’t it be easier to be rich and not have to worry about money? I find it very irresponsible that you weren’t born into wealth, Maya. My disappointment knows no bounds.

Whacamole Mom - September 1, 2013 - 1:15 pm

I miss deadlines daily, so I feel your pain. The piles of paperwork truly haunt me! It sucks when it bites you like this.

To Mary, you and whomever else is overwhelmed with tracking everything…I just discovered this app that I’m kinda in love with: Simplee. (I get nothing out of sharing this info with you but the joy of perhaps saving you a few seconds of time here and there.)

Also, I’ve had my own nightmares with insurance. Here’s one laughable absurdity: http://www.whac-a-mole-life.com/2012/02/letter-from-my-insurance-provider.html

Or what Jillsmo said. Let’s just all do that.

Kaylee - September 21, 2013 - 2:45 pm

Of course I make mistakes all the time – everybody does!

However, insurance companies provide exquisitely detailed instructions on his to seek/maintain coverage. Government programs also provide exquisitely detailed instructions to seek/maintain coverage — and helpfully post their policies and procedures online.

Clearly, doing the (incredibly annoying, time-consuming, endless) late work to maintain the services your son needs is low on your personal priorities list. The sad thing is, your son will likely suffer because you’ve apparently got better things to do than deal with all that paperwork!

Maya - September 23, 2013 - 4:20 pm

Your comment seems to ignore the very real fact that I have to pay attention to an enormous pile of paperwork, therapy and doctor’ appointments, insurance forms, insurance policies, IEP documents, legal documents, legal dates, and oh yeah….all of the therapists that come through my house each week.

Either you are not a special needs parent, or you have managed to magically fly above the day-to-day grind of details required to parent and fight for a special needs child and manage to keep a close eye on all of it. If you have achieved the latter, then I beg you to share with me your miracle methodology. I will then share your methodology with the world, which will instantaneously make you a hero and possibly quite a rich person, thanks to the applause and worship by special needs parents across the world.

In fact, perhaps you should write a book. I will be the first person to buy it from you, provided that it is perfectly edited, footnoted, and illustrated.

Also, if you are going to do a drive-by insult to special needs parents, based on the assumption that you could handle it better than us (it’s amazing how easy it is to make armchair comments without actually jumping into the ring and giving someone else’s life a shot), at least don’t be a fucking pussy. Paste your actual email address and phone number. It’s incredibly easy to insult a total stranger–who is brave enough to own up to her own flaws, while painting an accurate picture of the incredibly complex context in which she and her son exist–via the medium of the “anonymous” Internet. However, you end up looking like a coward (reminds me of that poor mother and grandmother up in Canada, who received an anonymous hate letter from another ignorant, spineless neighbor). I would be more than eager to humor your “heartfelt”, “helpful”, “well-meaning” suggestions if you had the uterus to offer these up in a face-to-face conversation. It’s just pretty damned hard to take you seriously when you say something in the internet school yard and then run away cackling. BE BRAVE. TELL ME WHAT A TERRIBLE PARENT I AM TO MY FACE. Oh, and please make sure to tell my children how much they suffer because of my parenting.

Karma’s a bitch, bitch.

Greg - September 23, 2013 - 6:01 pm

Dear Sallie or Kaylee,
Ironically, after contributing the name of this blog, I haven’t really contributed much. My wife is such a great writer and I think it is very cathartic for her. So, I am generally happy to read, but not write. Your comments really enraged me though. I felt compelled to respond, not because Maya needs anyone to defend her. She is more than capable of doing that. But because I know she’d never tell you how truly grueling her day to day life is and how heroically she faces it.

I’m guessing a country name like Sallie/Kaylee is your “Christian” name and further guessing you’d probably identify yourself as one, much to the chagrin of any real Christians. I myself am not certain whether God exists, but I am certain that if he exists, Christ himself would revile your commentary. Apparently you missed the part of the Bible that warns, “Let he who is without sin cast the first stone”.

Even if you aren’t calling yourself a “Christian”, being judgmental is not the best quality an individual can have to begin with (particularly for a “Christian”). Even more disturbing is that you’ve managed to raise what is normally merely an annoying, albeit nearly ubiquitous, quality to a sinister little art form. Your inaccuracy is matched only by your ignorance. Your ruthlessness is matched only by your vanity.

You proclaim that basically, if you were in charge of our son’s life, all would indeed be well and yet you know exactly NOTHING about it. Do you even know how many insurance companies we’ve run through in the last few years either because we’ve been dropped or had to switch jobs because of our sons needs? Do you have any idea how many therapists and doctors my son requires…no you don’t. If you did you would realize that keeping up with his insurance paperwork and all of the litigation related obligations to try to get our son a decent education, instead of being allowed to wander off alone in the city (like he was 3 times in public school) or allowed to eat garbage (like he was on multiple occasions), actually IS a full time job.

Then you can add to that full time job her actual full time job, a demanding job as a manager for one of the most prestigious consulting organizations in the world. However, whenever that work load is less than 50+ hours a week she always adds some photography to it to help make ends meet. She also tries to run a support group for parents of autistic children in our area. Oh that’s right, I should mention that we are also trying to help train the DC Metropolitan Police Dept to better understand autistic people. We are hoping that after doing so we can worry less about our son getting shot when he gets a bit older and accidentally steals something from a store (because he has no concept that you need to pay for things) and then ignores police officers when he’s told to get his hands out of his pockets and they think he’s armed.

My sense of decorum prohibits me from telling you what I really think of you. A smug little bitch like you would have no concept of the never ending sacrifices my wife makes on a daily basis for our son and our family. Compared to a ruthless and nasty person like you, my wife is a living saint.

She works at the equivalent of 3 jobs well into the wee hours of the morning and does so nearly EVERY night! I only work the equivalent of 2 jobs and I can’t tell you how interminably exhausting it is to wake up two or three times every night to either the sobs or outright blood curdling screaming of your inconsolable child. And just maybe, if you are lucky, you can string together 4 hours of sleep each night. But you never really sleep. You’ll always have an ear to that common wall of our bedrooms. Always listening to make sure our son doesn’t escape from our Fort Knox like house (where nearly every door, drawer or cabinet is physically locked down with metal locks) and wander off into traffic or jump into a pool without knowing how to swim.

You can comment on my wife’s failure to file paperwork promptly the next time your hands are red and cracking from the countless times you’ve washed your 6 year old son’s fecal matter off of everything he owns, everything you own, everything in your entire home and from your own hair and body. Maybe when your hands ache from scrubbing things clean you won’t feel so superior. You can expound on the error of her ways in her paperwork handling when your child kicks and screams so violently and bites you so hard that he draws blood and yet he cannot even tell you what is bothering him. When you drive your child 100 miles a day just to get him into a decent school and you take your child to 2 occupational therapy appointments, 2 speech therapy appointments, 4 or more Applied Behavior Analysis appointments and at least one other doctor’s appointment (take your pick from his shrink, his pediatrician, his geneticist, his dietician, his allergist or whatever doctor du jour is necessary) EVERY SINGLE WEEK then you may have a right to criticize and even then…would you? I think not.

No, I think you’re an armchair tourist of other people’s misery..trying to tell us all to “boot strap” it and how it really isn’t a big deal. I am imagining you smugly telling us, “Just Do it”, or some equally obnoxious and meaningless motivational jargon.

Our life is not a Nike ad you asshole. So, why don’t you just shut the fuck up!

Proud to be Maya’s Husband,

Greg

P.S….sorry about that decorum 🙂

Dani G - September 24, 2013 - 11:40 am

Hard to tell who has less compassion here: Kaylee the commenter or the insurance business.

We parents raising children with special needs are constantly, constantly at battle. It’s enough to fight the schools for fair services, the system, the medical establishments, and society’s cruel judgement, but to throw in those who cast stones behind the laptop keys seems plain old cruel.

M o r e   i n f o