Buzzing.

Bees buzz around a thick evergreen some 15 feet from where I sit. I wonder whether there is a hive in there. I’ve moved to the shade of the overhang. The sun on the nearby worn bench was too hot. Not too far away, I hear two maintenance men talk to each other over the sound of a vacuum.

“I don’t like Disneyland, but that new Cars thing sounds cool,”

“I hate Disneyland. You have to pay 12 bucks for a hamburger. And you can’t bring in any of your own food,”

“Yeah. Just gotta find a funnel cake.”

I think to myself how Disneyland must be universal summertime conversation.

Off in the distance I see four children, most younger than my son, holding on to a long nylon blue rope, their indistinct voices blending with the vacuum, coming from the opposite direction.

As other families work, vacation, and go about their daily lives, I am waiting. Waiting for the school district’s staff to finish the first half of assessing my son for an upcoming mid-July Individualized Education Program meeting. My son hasn’t seen these people in several months but he goes in like it was yesterday.

He liked his old therapists, but could run circles around one of them. When I used to watch them together, I could see her composure change as she lost more and more control, her mouth turning down in frustration. Not that I’d ever expect her to act inappropriately, but it was that glimpse of an edge to her sugary, sweet demeanor that lent itself to falseness.

The tell-tale facial expressions that broke through revealed a lack of understanding, lack of underlying affection toward my little boy, an inability to empathize. How ironic.

She always lacked control with no perceptible vicissitude to gain it. In the end, trying to “compliment” me for raising my child, she foolishly said she doesn’t know what she would do if she had a child ‘like’ mine.

She should be so lucky, but she could never understand that.

A gentle breeze blows by as if mother nature was attempting to soothe me into a belief that everything will be all right. Vacuums from my left and leaf blowers to the right, keep me from using that breeze to find relaxation or peace. The aloneness of the moment was not lost on me.

My little innocent, happy boy and I had just walked across the school grounds from an assessment by his old occupational therapist. As I sat in the trailer where OT took place, I listened to my son’s nonstop echolalia. His repetition of the words “McClaren”, “Las Vegas” “Bugatti” and “Need for Speed”. Now and then, he would emerge.

“I want to go to California,” he said. When told he was silly and he lived in California, he repeated, “I live in California. Wanna go there!” and he pointed out the window, suddenly excited to see the park next to the trailer and school. As though he’d never seen it before.

Seconds later, the park forgotten, he wanted to swing, play with a scooter, jump on a bouncy pogo stick, crawl through a fabric tunnel and bounce on a trampoline. Like a bee flying a jagged path, he buzzed from item to item, only joining the reality of his OT’s instructions and demands when it suited his fancy.

His smile never stopped. Asked to stand on one foot and balance, he seemed completely oblivious to the concept. He made no eye contact with his OT but smiling, he tried to hold onto her for balance, momentarily lifting one foot off the ground. Repeatedly, the therapist attempted gently to instruct him, using the word, “Look!” to copy her actions. He never did appear to look. Repeatedly, he echoed his own mantra about cars, trying only for the briefest of seconds to accomplish the task requested of him, before physically moving to the next item that caught his eye.

I wondered if this approximated anything like he behaved at school. Logically, I know it would have been reported to me had he been this inattentive and distracted. Logically, I knew there were tons of items in the OT trailer that any child would want to play with. Logically, I knew my son missed “Ms. G” and was happy to see her. But deep in my heart, I hurt.

He is different from “the majority”. He does not react in a social exchange so the other person knows he takes in what he is given, for communication. I know he hears, processes and responds but he does it all so differently. I know it is not my place to do it for him. I must give him room to respond and grow on his own. Yet, even those who know autism, who work with differences in their career, they don’t get that or get him.

They just follow the “rules” to assess his comparison with “typical children”. To score him on the meter of the perfect “typical” child. There is an inbred prejudice to the testing. An inbred perception that different from that imaginary “perfect typical” is less. And that makes me angry because it is wholly not true.

UNDERSTAND HIM! SEE HIS TALENTS! I want to shout at them. But they are living in their “majority” world, one in which we only exist to be reshapen to their standards. Even the place of “OT” is a trailer, apart from the rest of the school, in the back, in a corner, away.

As I sit in the trailer with my son, I can (mostly) read him. His looks, movement, echolalia. Those are the communications that tell me where he is and what he is thinking, not their standardized tests. I understand better than those who test him and flit in and out of his life, what he is about, what he knows and feels.

But I’m not always there. Nor should I be as he grows. And now, as life foreshadows the future, he is in a room closed off from me, being “assessed”, and I remain outside.

The breeze blows my hair back again. It’s almost over for the day.

When he comes out, I will hear a second-hand report of how he has done. And it will mean nothing more than the breeze in the end. Some things I cannot see, but only feel in the moment and they’re gone.

With a chill, I let the peace and beauty of summer pass me by. The leaf blowers have gone silent now as have the vacuums. The other children have left. And I wait for the buzzing child that is my bee to return to me, where he is home.

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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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22 Responses to Buzzing.

  1. blogginglily says:

    My wife has a big problem with the testing and comparing. We sit behind one-way glass as therapists see what Lily “can or can’t do” and Leslie gets soooo frustrated because they don’t KNOW what she can do. They only know what she is or isn’t willing to do RIGHT. THEN. And she grumbles to me about it and about all I can offer her (and you) is this: If everyone is tested the same way, parents behind one way glass as strangers test their children’s development, then the kids who have difficulty processing are going to have problems responding “appropriately”. Whether they CAN or CANNOT do something is perhaps less important than whether or not they do it. If your child CAN count to 10, for example, but cannot (or will not) do it for anyone other than his kindergarten teacher or parent, then for all intents and purposes, he cannot count to 10. If that makes sense.

    I hope that the testing is that sophisticated, with the therapists able to differentiate between “able” and “willing”. And there’s certainly a component of “willing” that has to enter into it if the kiddo is going to be in a typical school setting. The frustration and confusion evident on the therapists face is concerning though. This is what she DOES. His “refusal” or “failure” or “distraction” as it relates to her demands should be what she EXPECTS. Otherwise, why the hell do you need a fucking therapist?

    I was amazed watching our TSS work with Lily one day when we took her to her 4 monthly (6 now, I think) eval. Lily slapped her right across the face and she didn’t skip a beat; did not even acknowledge that anything had happened. It was a behavior intended to escape the demand, and , appropriately, it was ignored to keep from reinforcing it.

    Sounds like a shitty therapist.

    • solodialogue says:

      You are right of course about the difference between willing and able. I feel helpless when I watch them score him and when I am asked to score him – for example: “Is your child able to get out a cereal box and bowl, spoon and pour cereal and milk into the bowl completely on his or her own?”. Well, guess what? Toots hates cereal and has never done that because what would be the point? I can’t tell them he could do THAT scenario because he wouldn’t. I can’t say he’s able because I don’t know if he could put all those components together to do it! But I know he could pour a liquid into a cup- water- or a solid into a bowl- chips. That was actually a question! Presupposing that all kids eat cereal.

      And yes, bad therapist- which is why I pulled him and placed him privately. But I’m lucky to have that choice- others do not.

  2. Lisa says:

    You have a way with words…I can FEEL this post in so many ways….I know I sound like a broken record, but wow, this is how I often feel with Tate. You captured it perfectly.

    Thank you for helping me know I’m not alone. And I hope you know that I understand.

    • solodialogue says:

      Thanks Lisa. It helped to be stuck outside waiting with no Internet connection and no phone service. I had nothing to do but write my impressions!

      And yes! It always help to know you’re not alone.

  3. Allie says:

    Letting go, even just a tiny bit is so hard when we know our kids best and want to do everything we can to protect them. I hate those closed doors….

  4. Lizbeth says:

    I know I’ve said this before but T reminds me so much of A when he was younger. An it is sooooo hard to let go because what they have is invisible to most individuals. As a parent we see them. We truly get them and know what a little movement means or what a change in tone means. But we have to let them go and trust others will see them for who they are. And trusting in humanity? That’s not easy…

    • solodialogue says:

      So true. It’s hard for me to let go. What I see of the testing is so poorly constructed and prejudiced. I could do a book on how much of the testing questionnaires is outdated, biased OT presupposes things that just are not relevant to honing skills that my son needs.

      I hope you are feeling better! I keep checking for updates but I’m not seeing much so I’m guessing you are resting and mending well. xoxo

  5. Claudia says:

    It may not seem like he’s listening but he is. My son does similar things when spoken to. He won’t look but he is seeing everything in his own way.

  6. I can really empathize with what you’re saying here. We’ve had the 2-way mirror evaluations. I hate them. Sometimes its like they don’t even try to get a response from him. Anyway, I liked Jim’s comment. He’s kind of got a point. At the same time though, I wish the odds weren’t so stacked against our kids. It’s like you said in the post, “the inbred prejudice to the testing”…. **sigh**

    • solodialogue says:

      Yes, Jim is a smart guy. I know the tests are intended to “help” him acquire skills that will “help” him navigate a NT world. It just often depresses me that he must navigate that NT world or that the prejudices exist.

  7. I know that it seems like they are unfair, and in a way they are, but they are trying to see how he compares to typical kids. It is typical to go get some cereal, pour it in a bowl and add milk. My DH was incensed when they said that Random Guy didn’t engage in imaginative play when he lined up all his trains. He watched through the two way mirror and saw what Random Guy saw, not what the testers saw. The test writers and testers are usually neurotypical, so they really don’t get it.
    I always answer the questionnaires with what they CAN do and also with what I see as their needing to work on to help them write the goals. The pediatrician’s developmental assessment says to stop after you get three wrong, I always go on just to see what else she can do.
    It’s no use working on a goal that is too easy or too hard. Writing goals for IEPs is almost an art form. It will get easier for you, over time, to go through the testing process. One day our kids will be where Random Guy is at and they will say “He doesn’t need these services anymore.” Good luck with the numb-skull testers and make sure to remind anyone who will listen what Toots CAN do.

    • solodialogue says:

      Thanks Lori. I have to get back to just “writing goals for the IEP” instead of taking on the world. Yes, the whole comparison thing sometimes grows to be such a huge mountain to me. You should have seen what I did to the DP-3 they gave me to fill out. There was a lot of scrawl all over it. I “objected” to some questions using legal lingo… It was bad enough that the psychologist who asked for it emailed to offer to conduct a phone interview with me. We spoke for 40 minutes. At the end, she offered to throw away the DP-3 and use a narrative based on info acquired from me and our ABA case manager. Hopefully, that will be of greater value than a questionnaire that asks if my son “babbled” before he spoke or if he can do the tasks associated with eating cereal! Academically, I was told he was probably ready for 2nd grade (he’s going into first) but socially, I know he is not even ready for pre-school. Autism is just like that.

      I heard second hand that I should stop after 4 “nos” but when I kept going almost all were “yes” after that! It was a strange group of questions. And I’m glad for Random Guy because from what I’ve read, he seems to be doing very well. And don’t worry, I don’t have a problem telling people what I know Toots can do. 😉

  8. eof737 says:

    I like the use of the word buzz on many levels; busy, active, the sting and more…. You are still in charge. 😉

  9. We haven’t had an evaluation in some time… I guess I should be thankful for this. I don’t know if my heart could handle that on top of everything else right now.

    This is a beautiful piece of writing and I’m bookmarking it to come back and re-read it. I know I”m going to need it soon. Thank you, my friend.

    • solodialogue says:

      We hadn’t had an evaluation for a long time either. Knowing now what I did not know before really left me with a lot of mixed emotions I did not expect.

      Thanks for your kind words. I hope this helps you somehow when you need it. ❤

  10. I loved the style of writing you used here. I could really picture you there with your son. Thank you for taking us along the journey. 🙂 Sam

  11. Beautifully written. Thank you for sharing. I am not looking forward to our evaluations – I know it’s needed, but it’s heartbreaking. I admire your strength and perspective.

    • solodialogue says:

      Thank you. I found that when I sat through these evaluations, at the moments I just focused on ways to strengthen him, there was something to replace feeling down – something more productive that could change things. And that was what lifted me up. 🙂

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