March 19, 2010

Angel for an Hour

Posted in Life's Little Moments tagged , at 8:52 am by autismmommytherapist

Ah, let the bloodletting begin.

In case you’re  worried about my sanity I can assure you I haven’t joined a cult, although my experiences with two kids on the autism spectrum have led me to become a fabulous rule-follower. No, I am simply referring to the joys of a blood draw with a six-year-old autistic child. This afternoon I took Justin to LabCorp (the medical equivalent of the DMV) to have him checked out for PANDAS, which is a disease not nearly as cute as it sounds. Apparently, even though his last viral event was not strep, the fact that his OCD is through the roof now may be somehow related to this infection. Of course, the symptoms may actually not be related. The existing test for it only involves markers for the disease, is not necessarily definitive, nor is the course of treatment clearly defined.

Sound familiar?

Anyway, we’re here, early afternoon on the soggiest Friday ever, because I had the presence of mind (a miracle) to make an actual appointment rather than engaging in the LabCorp cattle call, and Justin had a half-day at school. I mean really, what better way to spend it with my son than getting his arm pierced?

After we’ve slogged our way through the unrelenting downpour into the waiting area, I am relieved to see only a few individuals/families ahead of us, and have a moment of hope that this experience will indeed be swift. I’ve got a tight handle on Justin who is usually fairly well-behaved in these situations, but today I’m battling severe sleep deprivation (his and mine), as well as his overwhelming need to touch everything single object and person repeatedly within a five-mile radius. We walk over to the reception window, and after practically body slamming him against the glass partition just so I could sign in and search my wallet for his always elusive insurance card, I finally release him.

I have just enough time to dump my purse, coat, and goodie bag on an empty chair before having to run interference between Justin and the nice Asian family huddled in the corner, regarding my son with some consternation. Apparently they’ve had the grave misfortune to purchase a baby toy which plays music AND lights up, and Justin of course feels that gives him proprietary rights. After removing his clenched fingers from the toy in a grasp reminiscent of my hold on good dark chocolate during PMS, I manage to maneuver him to the other side of the room so the assaulted family can recover. I’d offer them wipes, but Justin will simply view that as another invitation to touch what he feels is his, so I decline my own silent offer.

The gods are smiling upon me, because the wait is indeed brief, and within minutes and only three or four rounds of chasing my impulsive six-year-old around the room, we are called in to register. I am an old pro at this part, and thankfully the check-in area boasts cubicles, which are excellent receptacles for hyperactive autistic children. There’s nothing interesting for Justin to get into over there, and if worst comes to worst there’s chairs, and I can always sit on him. I’ve done it before.

Unfortunately the technician can’t find Justin in the system even though he’s been here so often he should contribute to their mortgage, and quickly things start to get a bit dicey. In desperation I allow him to spin the pen on a leash quite firmly embedded into the computer desk, and although it occasionally comes dangerously close to putting out the eye of the man so valiantly re-typing my son’s life history, the tech doesn’t complain. Justin continues in his perseverative pastime, and it’s on his fiftieth twirl (give or take a dozen) that I hear the voice emanating over the walls of our tiny cubicle.

“Hi honey, how are you today?”

I look over, praying it will be somebody we know, someone who will so enrapture my son with their attention that I’ll make it through this intake with everyone’s body parts intact. Alas, to my dismay, our new friend is a stranger. Justin has responded however, and has momentarily abandoned his rotating dagger to check out what this new person might have to offer him. I’m certain he’s thinking at this point that it will be better than a pen.

The two engage in what passes for discourse between a friendly, unintimidated adult and a non-verbal autistic child, and I am able to conclude our little interview and receive further instructions, which I am miraculously able to retain long enough to usher Justin to the appropriate place. I smile quickly at the woman next to us, corral Justin and gear, and move on. Normally, I would have thanked her for her help and told her he was autistic in an attempt to educate and instruct people about spectrum disorders (in the remote chance she hadn’t figured it out already). I look at my son as a mini-autism ambassador, and every positive interaction with the community at large scores another point for all of us. But today I’m just too tired to give my spiel, and instead we exit our mini-cave with haste and strike out for our final destination.

Justin, who has the memory of a dozen elephants, leads me down the corridor to the correct location, and is none too happy about it. He is fourth in the queue, and is not ecstatic about his less than diva status either. Out of the corner of my eye I notice our cubicle neighbor approaching us, but as I am now too busy having my fifty-DVD collection being rejected while simultaneously attempting to keep Justin from stealing medical supplies, I don’t make eye contact again.

Finally Justin relents, sequesters himself in a seat with an apparently non-offensive video, and waits for the inevitable. When it’s his turn the techs insist he change his location, a request which once again is not met with a great deal of enthusiasm.

It’s when I’m sitting on our bloodletting throne and trying to keep Justin still on my lap, reassuring him I’ve numbed him so much with Lidocaine they could amputate and he wouldn’t feel it, that my son’s new friend pokes her head around the partition and makes her appearance again.

“My son had Angelman’s syndrome. He had a lot of the same symptoms as autism, and when he was grown it used to take four people to hold him down for a blood draw. Can I help you?”

God, yes. You can sing, dance, hold down an appendage (his or mine), whatever you want. Just help.

The use of the past tense in referring to her child doesn’t escape me. I wonder at her calm use of it, the juxtaposition of this friendly, helpful woman with the pain she must have endured raising a severely disabled son to adulthood only to lose him. I am impressed she has the strength to offer aid to anyone who might remind her of her sorrow, rather than simply sitting this one out, feeling she had done her time.

Since Justin is “secured” I briefly contemplate that although “this autism life” is none I’d wish on anyone, we have it comparatively good to any family going through this thirty, twenty, even ten years before we did, when autism diagnosis and treatment was conducted in a veritable wilderness. I think momentarily of the parents who not only raised their challenging children in almost inhumane circumstances, but also somehow managed to enact IDEA, begin insurance reform, and a variety of other initiatives that I am appreciative of, but mostly take for granted. I don’t know how they did it, helping others with such scant resources, when for the last six years I’ve pretty much just kept my kids alive, and haven’t contributed much to the community at all. I don’t know how women like the one in front of me survived, particularly in an era where disabilities were far from accepted, even embraced, by society. I don’t know how she buried her son, still smiles, and helps perfect strangers.

But she is doing just that, and I am eternally grateful, as I have as much desire for a return trip to LabCorp as I do for that first post-winter bikini waxing. As we make our way through the corridor to the parking lot I thank her verbally as the torturous event concludes, and silently thank the generations before me who through their efforts have made my life, and more importantly my son’s life, so much easier.

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28 Comments »

  1. Kim's Mom said,

    OK – I think I have stopped shedding tears at the moment so can respond. Perhaps because I was a special educator for more than 45 years the history you so eloquently related brings back so many sad memories. And you are right daughter, when I began my career it was the beginning of so many things–the Beadleston Act in NJ, IDEA, parent adovcates, etc. Those families did indeed have many struggles and rose to the occasion to create a much better world and services for our special kids. And now your generation of advocates brings another level to the cause and struggles. And with parents such as you, I have confidence the next generation of kids will benefit greatly. Love ya. Mom

  2. Anita said,

    One act of kindness you do can make or break a day for someone – Pay if forward!

  3. Cami said,

    Kim, you are such a GREAT writer!! I can not wait to read your book. Pleeeaaase let us know when and where we can buy it?

    Much love,
    Cami

  4. Lynda said,

    Your courage, strength and humility are unparalleled. I can not wait for the book. Hang in there!

  5. Anne said,

    Kim:
    my kids have other challenges (among them an extreme sensory response to things like shots and blood draws– I, too, have had to sit on them at times.) your gift at painting a scene with words is wonderful, and you managed to make me smile as well as feel your sadness and frustration. I can tell how tough this day was by the explosive,breathless way you tell it. God bless you all. Anne

    • Anne, thank you for your response, particularly since I’m sure you have your plate full with your own children. I hope the whole shot/blood draw experience has gotten better over time, or that at least you’ve gotten more help! Thanks for taking the time to write!

      Kim

  6. Amber said,

    You really are a fantastic writer, Kim. So many people have told me that I should have written down my adventures in autism. I am glad that you are. These are the stories that other people can’t even begin to imagine. I can’t wait for the book!

    • Hon, you could write your own book, trust me. Perhaps we should collaborate? You sound great. Thanks for posting again, and thanks to Cami too, it really helps!

      Kim

  7. Charlotte said,

    Kim,
    only you could describe PANDAS that way, “…a disease that’s not nearly as cute as it sounds.”

    So…someone else once explained PANDAS as the result of strep settling into the same circuitry that ignites ADHD. Something like that. A couple of our friends’ kids have been “diagnosed” with PANDAS, and it is definitely not a big-eyed loveable bear.

    I wonder if Justin could be reacting to the allergy season, too?

    Whatever the cause of his latest symptoms, you’ve earned your Diet Coke for the week, kiddo.

    Charlotte

    • Only you would recognize how weird it is to relate my son’s possible discomfort with a cuddly animal… He definitely has allergies, not sure about the other. I have recently become a Netti-pot convert, whereby I squirt saline up the nose of my squirming autistic son in the tub every night. We really enjoy it. I will say, however, I think his allergies are better than they usually are this time of year, so I will persevere. He’s a good boy and let’s me do it, most of the time.

      Diet coke diet schmoke, give me the real stuff baby……

      Kim

  8. Cindy said,

    Amazing how those angels show up when we most need them.

  9. Courtenay Adams said,

    I was totally entertained. Then, I got to the end and realized how poignant that moment of recognition with the woman must have been. How brave of her. I did cry a bit, and I love the karma in your thoughts.

    • I know, what she did, on so many levels, was exceptional. Check out my Easter egg hunt post when you have time, you’ll get a kick out of it. Will write to you!

  10. Kathy Milmore said,

    Oh, Kim, I am so glad you have those days when angels appear…

  11. Susan said,

    Wow, it is not just the the topic, but the humor in your writing that grabbed me. I did get to stop short of sitting on my son in the bloodletting chair and just bind him in a vice grip.

    May the force stay with you, Susan (friend of Charlotte’s)

    • Sadly, that probably made your day. It’s the little things… Thanks for taking the time to post. Isn’t Charlotte great?

      Kim

  12. Melissa said,

    WOW! To be able to make someone laugh and cry in one page, now that’s talent!

  13. misifusa said,

    It’s amazing how ‘angels’ arrive in our lives when we need them. So happy you had one there for the blood test. xo

  14. Mary Pat said,

    I feel fortunate that Jen Haftel gave me the information to read your blog. I will certainly be passing around your information to my friends so everyone can learn from you. Thanks for sharing and putting your words on paper!

    • Thank you Mary, I appreciate the “passing”, and that you took time to respond. Take care and thanks again!

      Kim


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