Unprepared.

In college and graduate school and for years after, I had “nightmares”. These nightmares always carried the same theme. I was late for an important exam and couldn’t get there. There were obstacles. Or I hadn’t studied and I was on my way to the exam. I was unprepared.

The nightmares were productive. They scared me into studying. I set alarms. In reality, I missed no exams. I passed my tests. The nightmares prepared me for life. I went to work, to appointments, and to Court on time.

Then, along came my son. There were now two sets of deadlines to meet. This would be easy! Or so I thought.

My son introduced me to dawdling, slow motion, distraction, and mood swings. I was confronted with refusals to brush teeth, comb hair, eat breakfast, put on clothes, shoes, coats. I witnessed frustration, tears, screams and uncontrollable laughter (sometimes by both of us). I have been treated to potty accidents on the way out the door, and routines which cannot be broken. None of this fits neatly into our schedule.

I try to account for unforeseen events with early waking times and rigid routines. Sometimes, this works and we’re off to the races on time. Sometimes, I’m cutting it really close. The rest of the time, I’m late.

One fine day, when I wasn’t late, I was surfing the web and found that Sesame Street Live! was coming to town. When my son was about 2, we took him to see a Diego Live show. He was scared at first, but by the end, he was dancing in the aisles with the other kids. Recalling that, I thought this would be fun. My son loves Elmo and we could do something different as a family. I bought tickets. I showed my son the pictures. We talked about it for weeks. We looked at it online. The day came.

“Where are we going?” I asked. (Well, really, I asked like three times before I got his attention). “Sesame Street!” he answered. “Yay!” I cheered. “We’re going to see Elmo and have lots of fun!” He smiled.

My husband and I had decided that it would be best if we got there a little late so he wouldn’t squirm or bolt or scream or tantrum or……Bad idea. We hadn’t been there since before my son’s birth and had failed to allow enough time for travel, parking, walking in, validating tickets, finding our seats.

And, oh, I forgot the stairs. About eleventy million stairs. All with dirty rusty, handrails. There were sets of about 5-6 stairs, a landing, then another set of 5-6 stairs. There were at least six separate sets of handrails. Enough to accommodate large crowds for basketball games and Justin Bieber concerts. My son had to go up one set of stairs, touching the handrail. Then, down. Up and down. It became a maze of stairs and handrails. As we pulled him away, there was discontent. Not too bad. You know, like the first drop of rain before the hurricane.

The venue was loud and dark. My son was scared all over again. We never made it to our seats down front. Too scary. We sat toward the back. He buried his head in his daddy’s shoulder. He peeked out. He wanted to leave. Intermission came. Daddy took him for ice cream. Maybe this would cheer him up and we could stay. Maybe he would calm down.

As I sat there waiting, contemplating why on Earth I thought this was a good idea, a woman approached me. I did not recognize her. She recognized me. Smiling, she said she was the mother of a girl from my son’s preschool. I remembered that she helped out or taught there or something. She held her daughter’s hand.

She plopped down in front of me. Thus, began one of the weirdest experience I’ve had since my son’s diagnosis. “I heard about your son and I’m so sorry. It must be so difficult to raise a child like yours. I don’t know how you do it. What a challenge it must be. I don’t think I could do it. I couldn’t face it. I really admire you.” I was dumbfounded.

My husband approached. “(Her daughter) say hello to (my son.)” “Hi” she says obediently. My son, oblivious to her, squirmed away trying to run up and down the 75 steps between the entrance and the floor. No “hi” back. My husband was then treated to a repeat of what she’d just told me. Finally, our waterboarding complete, she said she had to go, and flounced off with her daughter in tow, seemingly, self-satisfied that she had done a good deed by making us feel “special.”

My husband and I looked at each other. We didn’t have to say a word. While she may have meant well, we had just been pitied, told our child was less than hers and that she would, basically, commit suicide if she was us.

Truly, and without hesitation, I can tell you I was unprepared for this. All the exams, life’s experience and nightmares did not remotely prepare me for this. But I want to be prepared now for the future. I want to know the answer, the reply, the comeback. If I could do it again, aside from my primitive instinct to kick her ass, what would I say?

“It’s too bad that you could not raise your child if she had a disability. I guess you’d just give her away? Send her back? Revoke the love you gave when you first saw her face?”

“Don’t admire me. I love my child, the same as you love your child. My child is different. He is not defective. He is not less than your child. He will grow into a man who will never make the distinction you just did. He will be a thousand times greater a person than you.”

Ya, that sounds good….Oh, hell. I’d rather just kick her ass. Ya know what I mean? Does that make me a bad person? I’m still unprepared.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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12 Responses to Unprepared.

  1. What a tough question! I tend to “overreact” to these kinds of situations (at least according to my husband)… and I would probably respond with the same feelings you’re sharing here. By my husband (always the calm and easy-going) would argue that the woman *was* probably trying to do the right thing.

    I’m reminded that some people just don’t have the gift of expression that we find in the world of online blogs. My husband would want me to at least have to give the woman the benefit of the doubt on this — maybe she just doesn’t know how to say she’s proud to know you without making the work you do for your son sound like something to be pitied?

    But yes, if you ask me… I’d probably kick her ass 😉

    • solodialogue says:

      Thank you Karla. It is a tough question. Would I rather have someone say something to me like this, deny my son’s disability or completely cut me off socially? I’ve had all three happen (to be continued…). I think I’d go with this woman, who I did not know socially at all before this encounter. We’d only been introduced as so-and-so’s mom. I’m glad – just between you and me – that we’d both kick her ass! 🙂

  2. Tam says:

    I never had this experience due to autism. My children did not have autism. They were deemed “normal” by society’s standards. My kids were far from perfect. My youngest was a HUGE tantrum thrower. So much so, that when we were out in public I carried a squirt bottle filled with water. As soon as she started in the early stages of a tantrum in public, I whipped out the bottle. I would give her a little blast in the face and it would give me enough time to get to the car before she turned it into a full blown screamfest, followed by holding her breath and passing out for a moment. It was awful. Others looked at me with pity or judgment, muttering under their breath about my parenting skills and my “uncontrollable” child. My way of handling it was to get out quick, get the situation under control and not hurt my child by getting frustrated or impatient. I can’t tell you how many people thought that squirt bottle was child abuse.
    As parents, we are fiercely protective of our kids. I truly think your after-thought response would have been appropriate, and make her think about what came out of her mouth and what effect her words had on someone who was trying to do the best she could do with a child being difficult. Regardless of what glass house she was living in to think that just because her child wasn’t diagnosed with autism, didn’t mean her child wouldn’t present other problems later. In reality, she was probably trying to be sympathetic…But, God…(shaking my head)… the ignorance.

    • solodialogue says:

      Tamy, you know, as an ASD (autism spectrum disorder) mom, I usually think, look my kid is losing it because of his disability. If I had an NT (neuro-typical) kid, then maybe dirty looks in public would be acceptable. But your comment makes it clear to me that these kind of looks of judgment are simply not acceptable under any circumstances! Every parent has to deal with their children in the way that is the most effective for them. I know you have beautiful grown daughters and they got that way from the warm, loving mama that raised them! Thanks for giving me perspective.

  3. Meg says:

    What a deep and thoughtful, and humorous story. I am appalled at what that woman said. It’s so hard to be seen “as different, “as less,” “as incomplete.” This is especially true in a society that is fiercely competitive like the United States, but then under a veneer of “christian kindness.” It’s as if the insults are all candied up in “thoughtfulness” and “empathy.” But empathy it was not. How do you respond? I think your non-response was best as probably this woman is ignorant on how to respond, how to think, how to join with someone at the level of the heart. Perhaps looking at her in the eye and saying, “I love my son. I wouldn’t trade him for the world.” And, “I hope your daughter can someday contribute to society as much as my son is now, by being different, outside of our everyday mundane life.” Perhaps the smartest person in this whole situation was your son. Next time, fail to acknowledge them, and then tackle the stairs with him. It’s a win-win, and a work-out as well.

  4. solodialogue says:

    There will always be people like this woman. I want to change the world but better that I just have that “perfect response.” I like your ideas. The stairs, it is Meg! Next time, just the stairs…and if there are no stairs, we’ll go find some.

  5. Oh, I remember those days…

    My son has Aspergers, and while today he presents as a perfectly normal ten-year-old, when he was little he was an enigma wrapped in terror.

    I never bothered with a pithy response. That’s because I knew the people who said this still weren’t in the clear zone. They were still having children. If they weren’t, then they still had grandchildren that hadn’t been born yet. There was nothing I could say that could make them realize that yes, they are strong enough.

    That can only be taught by a child with special needs.

    • solodialogue says:

      I know that I could ignore the next woman who comes along like this one but that just does not help to solve the huge problem. If only there were a pithy, yet educational comeback, something to make them think – then maybe..But you know what, Katie? By saying that you can’t make them realize they are strong enough, then perhaps simply asking why they think they are not strong enough would make them think. Yes, I like it. Thanks for your comment.

  6. Uncle Marty says:

    I say you kick her ass!

  7. Uncle Marty's Cohort says:

    I would have helped you kick her ass!

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