A Thank You Note

Yes… it is long. But every once in a while it comes pouring out of the recesses of my heart, and there it is… an unedited account of a day in the life with my boy with Autism. A friend of mine asked me {at 10 o’clock last night}, if I would be willing to write a letter to a representative from Autism Speaks. It just so happens I was looking for a contact over there to send a thank you note. Her request was providential. Thanks Jen, for digging this out of me so early this morning.

Autism is no respecter of persons. Unfortunately, us neuro-typicals are. This is what ordinarily makes interacting in public a complete nightmare. The more I talk to other parents who have children on the Autism Spectrum, the more I realize that 9 times out of 10 when faced with the decision to stay or go… we stay. Not only is it completely exhausting to visually prepare my four-year-old son with Aspergers to venture into uncharted territory {be it as non-threatening as an invitation to dinner in someone’s home or a quick peruse of the farmer’s market}, but it typically isn’t worth the scene he will inevitably cause when someone accidentally bumps into him, or if someone breaks out into loud laughter, or God-forbid, they look him square in the eye and use a high-pitched animated voice and say, “Hi Salem”. My angel-eyed pre-schooler spontaneously reincarnates into one of the seven fire-breathing princes of Hell leaving my husband and I under critical watch as our family is immediately scrutinized and misunderstood. The unspoken {and sometimes spoken} comments of others range from “You better get that kid under control” to “You are going to have a tough time with that the older he gets, Mama”…Oooo, it makes me want to claw at their eye sockets or go hide under the nearest farm stand. I want to wear a shirt that says, “I’m not a bad mother. Please don’t report me to DFCS”.

When my sons SNP teacher informed us that Autism Speaks was sponsoring a day for Spectrum families at the Georgia Aquarium, I RSVPd, however I had my usual reservations about attending. Ordinarily, an environment like that would sure to be a sensory nightmare for Salem, but she assured me that the audio/visual effects would be dialed back to accommodate the varying sensitivities of special needs children and adults. Up until an hour before we were supposed to drive downtown, I was talking myself in, and out, and in, and then out again of going– free tickets, or no free tickets. What I don’t pay to see Deepo in 3D, I will inevitably pay my shrink to help me recover from the post-traumatic stress of such a crowded and sensory-stimulating event. Against my better judgement {so I thought}, we piled in the van and headed down to the Aquarium to spend the morning with Deepo and 500 of our closest Spectrum friends and neighbors.
When we arrived, we were ushered past a long zigzag waiting line of what I assumed were neuro-typical ticket carriers through a separate door where we quickly claimed our admission passes. Our voyage began with 30 minutes of waving to the diver who was cleaning the Moonfish tank past the sting-rays and into the Beluga whale cave. We hadn’t been there but an hour and already, I could tell Salem needed a break. We found a dark corner and watched the belugas perform their slow-mo acrobatics for what seemed like an eternity, but I was overly cautious to let Salem take the day at his pace and not mine– even if it meant we didn’t get through all of the exhibits. So far, so good. Moving on…

When he was ready to emerge, we headed to the stadium to see the dolphin show. Again, I have seen the Star-Spinning Obliterator of the Five Senses, forgive me… AT&T Dolphin Tales performance before and I was curious how the production was in fact going to accommodate the collective meltdown that surely would ensue upon assembling 1,500 ASD kids in a dark, enclosed space with spontaneous strobe lights and loud orchestral music and manic-sea life. But, I was assured the performance would not only be brief, but that it would be sensitive to those with…er… sensitivities. Post-initial applause and crowd cheers… wait for it…. wait for it…. Salem erupts with a blood-curdling scream that I was quite sure would frighten the dolphins and therefore shut down the entire show. It was short-lived, albeit embarrassing, but as soon as it subsided, he buried his head into my lap, and I began my instinctive peripheral wariness of those around me who were no doubt freaked out and/or put out by my son’s eruptive display.

That’s when it hit me… I was among sympathetic parents and caregivers who are not foreign to this isolating disorder that is socially debilitating for the whole family. They get it. They get my son. I am not alone. No sooner than Salem’s sensory episode ended, a large adolescent boy was removed from the crowd upon falling into a distractingly loud meltdown that re-directed the attention of our entire seat section. As the sights and sounds of aquatic stage performance swirled around us, I felt myself relax for the first time all day. I was with my son. I was with friends. And I didn’t have to explain myself, or him, to any of them.

All of a sudden, I looked across the stadium at the other small children {and not so small children} enjoying the marine-life fanfare with intermittent bouts of covering their ears and eyes and/or clinging to their caregivers. At that moment, I took a strange comfort in the fact that Autism visits families and individuals irrespective of class, income, education level, political ideology, or religious preference. While the rising statistics are daunting, Autism is fast becoming the great social equalizer among upcoming generations who’s individual battles {I pray} might give them a greater respect, understanding, and compassion for the subset of mankind that have been blessed with this curse.

At the conclusion of the show, we shuffled out of the arena with all of the other sensory-stunned audience participants. My Mom-stinct said that Salem had enjoyed himself enough for one day and we had better quit while we were ahead of another melt-down. He did inevitably launch into his own sideshow of flailing and hollering as people were bumping into him left and right, but this time, I didn’t avoid making eye contact with anyone. I caught the glance of one mother, and this time, her unspoken comment was, “I understand what you are living with. I know how hard it is. Hang in there. I get it too.”

Thank you, Autism Speaks for not only giving me the chance to treat my son to a magical day at sea, but to experience the rare joy of community among other families not much unlike our own.

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4 Comments

  1. Jade said,

    May 1, 2013 at 11:57 am

    I love you and I daily pray for you, the encounters you make throughout your city and the people you will impact with you patience and grace… maybe that’s how some will view you as so many others judge. My prayer is that you not feel the judgement and rude eyes, but instead use those uncomfortable moments to be a beacon of light and strength!!!! Salem is sooo blessed with a mommy like you!

  2. May 2, 2013 at 2:24 pm

    Bless you Salina. You are an amazing mother. You write so eloquently about your journey and I know God is using your words to give help and hope to so many other families. I think you should write a book. You are a fabulous writer and I really believe your words and walk would resonate with many, many parents. Love you:)


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