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

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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 […]

Love is Complicated

A friend once asked me – and she was asking this as a long-time friend who knew that I trusted her, and with whom I shared a 100% honesty rule – if I loved my son less than my daughter because he is autistic. I considered the question seriously. After all, this was a friend […]

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Niksmom - January 23, 2013 - 3:38 pm

This was just lovely. Beautiful.

I’m not sure how you did it, but you just perfectly summed up my feelings for my own son. The ferocity of all of it. Every minute, every up, every down…SO.INTENSE.

And I wouldn’t trade it for the world if it meant not having my boy with me.

The Defensive Stance

A few weeks ago I took my daughter in for her first dental visit.  The appointment was at Children’s Hospital in DC. This location meant that we would have to park in a large underground garage, take an elevator to a large thoroughfare/lobby area, and walk down at least two large hallways, along with anybody […]

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Older Husband - August 22, 2012 - 3:21 pm

Happiness is more of a choice when the rest of your Maslow’s hierarchy is a little more complete. When you bounce like a pinball between doctors offices and the myriad “treatments” to help our son and vacillate too often between complete despair over our seeming inability to help our son and the slim reeds upon which we, as parents of autistic children, hang our hopes for a brighter future, it is hard to really think about what happiness is…let alone how to achieve it. I try to manage the mourning of the death of the son I was supposed to have and mitigate the pain of watching my actual son struggle with things a 2 year old could easily do by forcing myself to continue to believe that we will find something or somebody to help Max. I know the odds are against us, but, I need to believe.

Happiness is that feeling I’m saving for when (not if) we prevail …

Hang in Maya…I love you and at least we have each other despite our less than ideal circumstances!

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