Advocacy and Awareness

Editor’s note: This is a note that I wrote and shared with friends that spurred me towards starting this blog…

Have you ever spoken up for a friend or family member with a physical ailment? Have you ever participated in or donated money for cancer, muscular dystrophy, natural disasters? These types of things are easier for us to comprehend, to wrap our minds around, because we can physically see the manifestation of such things.

Now, have you ever spoken up for someone with a neurological disorder, a disorder of the mind, one you cannot see, one that still defies many people’s capability to understand? Hmmm….

You may wonder why I’ve been sharing so much of my journey with Wesley. The answer is plain and simple – advocacy and awareness; to increase understanding so the world may be more compassionate and loving and free.

Picture yourself now in a bowling alley with a group of your friends.  To one side of you is an empty lane without bumpers, to the other side of you is a family of 5 using the bumper lane.  In walks a family of 3, the two boys voice that they don’t want to use the bumper lane, so the mom signs up for time on the regular lane next to you and your friends.  Her two boys are fairly excited, the older one (age 9) is talking nonstop, the younger is bouncing all over the place like he has ants in his pants.  Mom gets the boys all situated – coats on the benches, bowling shoes on their feet.  The older son steps up for his first bowl – gutter ball; second – gutter ball; third – gutter ball.  Attempts to encourage him to take his time, to breathe, to line the ball up with the arrows on the lane aren’t processed, a mild frustration ensues.  The younger son steps up for his turn and also has 3 gutter balls, but it’s ok.  He said he’s having fun anyway.

Up next is the second string for the older son.  He hasn’t slowed down anymore than where he started. First bowl – gutter ball; second bowl – gutter ball.

And then MELT DOWN! You look over to the woman and her two children next to you.  The older son has completely lost it.  He’s screaming at the top of his lungs, crying, squeezing his fists together, and yelling “this place sucks. I hate this place. I just want to….insert inappropriate phrase.” The mom is at his level, talking to him very quietly, very calmly. The younger son just wants to have his turn bowling.

You’re looking over at them. No, not looking, staring, and thinking what is wrong with him? Why isn’t he listening to his mother? Why isn’t she doing more to “get him under control”?

Now, put yourself in the mom’s shoes – knowing that yes, nearly everyone in the bowling alley is staring now, and wishing that you could hand out cards saying “My son is being evaluated for autism spectrum disorders. What you are witnessing is a temper tantrum. He will calm down shortly. Please do not stare. For more information about Autism Spectrum Disorders, visit http://autismspeaks.org/ and http://aane.org/.” But, you don’t have cards, all you have is the ability to maintain your alignment and let your son calm himself down enough to usher yourselves out the door.

After a few moments, you notice the boy is no longer yelling.  He is still visibly upset, but not as obtrusively so. You wonder if the mom is going to leave with her kids.  In the meantime, the family of 5 in the bumper lane next to you finishes up for the day and leaves.

The mom has calmed her son down enough to have a conversation. Although she’d love to high-tail it out of there, both sons now want to bumper bowl. She makes it very clear to them that if another episode like that happens, they will leave. Although the older son refrains from having another melt down, he doesn’t recover completely.  The mom watches and waits for that next explosion, talking to both boys in a calm, but firm voice, reminding them to take their time, not rush. The younger son is having fun. The older son remains sullen and angry the entire time, mouth turned down in a scowl, body movements and thinking as rigid as a 2 X 4. Although there are no more gutter balls, it does not matter. The bowling alley did not play by his set of rules, the mom did not play by his set of rules, even he did not play by his set of rules – a set of rules that are known only by him and change to suit him and his needs at any time.

Needless to say, we’re taking a break from bowling for an unspecified amount of time.

This is just one of the many accounts, one of the many activities that has propelled me to seek services and diagnoses for Wesley. (More on Seamus later).

Wesley has the start to a diagnosis and a complicated one at that – cerebral dysfunction, behavioral disorders, developmental features indicative of the severe range of ASD and high/probably AD, sensory processing disorder…

Well, if you look up Cerebral dysfunction, it is a very convoluted medical term without any clear definition pertaining to a wide variety of disorders. Huh? As for the features indicative of ASD – well, my answers were well within the severe and high/probable range. The school, however, scored him in the “normal” range. Which, for this year – maybe, if you ignore the underlying current. If you look at his performance on a whole and look at his performance in classrooms that are not micromanaged, have peers with which negative interactions occur, attend “normal”, unstructured afterschool programs – holy cow Batman, there’s a problem, a big problem.

All of this leads to more advocacy, more diagnostic testing – neuropsych, speech, OT, behavioral – and more delays. However, what we have now is a start, a jumping off point, a bit of fire that I can go back to the school with and push for services to help Wesley in the areas in which he struggles.

To be continued…

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1 Response to Advocacy and Awareness

  1. I’m so excited for you as you begin your journey. I am really looking forward to seeing your story unfold. 🙂

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