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Got my Christmas Letter, huh?

December 21, 2011

I figured as much. Great. Nice to see you read to the end of what has to be the longest Christmas letter ever written. Kudos.

Regarding the content of said letter, I received a little gentle feedback before I mailed them out worried that it was a little too graphic, or perhaps slightly too detailed. Specifically regarding my son Alex’s self-abuse due to his special needs as an autistic child.

Well, I understand. I could have typed “Alex is having some issues, is a little fussy at times, or cranky” but that would have been watering it down tremendously. Really, this would not be conveying enough of what is a very real stressor in our lives. Plenty of our friends and families do not much know the world of an autistic person, let alone the upheaval and stress it can add to one’s life. In their defense, it’s usually because they haven’t yet visited with us (or vice versa) to see for themselves.

That’s why the detail is in there. Nothing more. It’s also just how I write. This blog is supposed to be a venue for me to post what I want to post. So I guess I’ll explain things here if I have to.

I just got off the phone with a very good friend of mine. He and his family were having a party this past weekend.  My family and I were invited.

We didn’t go, though. I told him it was because Alex had just gone through a medication adjustment and would be too “variable” to bring him to what was probably a riotous, boisterous, fun party. It likely would have overwhelmed my son. My wife and I would be double stressballs worrying about Alex spiraling out of control, hovering over him with concern, not catching up with all the other party attendees (the whole point of a good Christmas party) and, finally, forcing us to leave too soon after our arrival. How much fun is that? Answer- not much.

He asked about Alex. “How’s he doing? Is he talking yet? What do you mean he wears a helmet?” All good questions, yeah. So I answered him. He’s doing good–doing better than he ever has, really. But no, he’s not “verbal” yet, the occasional “dah-dee” and “hep-mee” (help me) aside.  And he wears a helmet because he sometimes engages in such rough bouts of self injury that he gives himself black eyes, body bruises and goose eggs on his noggin. We have to protect him from himself sometimes, so he occasionally wears what looks like a football helmet with a full face mask.  It’s definitely not normal outerwear for a hip 4 year old boy on the go. :: sarcasm implied ::  More explaining follows, an attempt by me to soften the jarring image of my son bouncing his head off of a concrete floor in the middle of a store, or park district playground, or friend’s Christmas party.

I can’t make this up. I wish I didn’t have to say any of this, either.

But I am working hard on not being ashamed to admit that my son suffers severely from his autism. So does his family. It’s gut-wrenching. No sound is more sickening than to hear your beloved, beautiful offspring deliberately hitting himself…that SMACK of hard fist on barely padded flesh. And the mournful, plaintive crying/whining that immediately follows.

I don’t get tired of explaining the nuts and bolts of why he wears it, how it tends to be a powerful, coercive behavior modifier, or what the other “protocols” are with its’ use. I just sigh a little knowing it’s a small bit of a handicap, a sign that says our little guy is demonstratively different than other 4 year olds, a hardship that my son and his family will deal with in one way or another for the rest of our lives.

In a way it just “is”. I work hard to accept that. But it’s not easy.

And if you’ve reached the end of this long passage, thanks.  I promise to write something a little more upbeat next time.  Maybe even a little shorter.

Feedback/comments always welcome, too.

From → Alex, Autism

  1. Brian F. permalink

    Dave, good post. And as a friend of yours who has (for years) so enjoyed your gift of channeling your wonderful wit and charm into words this is a nice virtual visit/conversation with you in the days/weeks between when we actually get to share time together. I have a very strong belief that your blog may turn out to be a gift not only to your loyal readers, but in some ways, to you and your family as well.

    Good on ya.
    And best wishes for a blessed and joyful Christmas.


  2. Gina permalink

    I think you should turn this blog into a book someday my friend. You have a gift for writing and people need to hear your family’s story, struggles and it’s wonderful moments no matter how small they may seem to be. And it will possibly help others too who are struggling, feeling so alone, or have other family members or friends with autistic loved ones and want to help or understand. You and Kat are an amazing team, never forget that.

  3. Bill K permalink

    Hello to the windy city from the mile hi city. Thanks as always for the letter and the link. I look forward to your “nonplussed” thoughts and musings. Piloting your life on a Cat III approach has indeed become a challenge. Luckily it’s one I know you’re handling as well as you would in the cockpit. You all have a happy new year,


  4. I did not get your Christmas letter (wtf?) but I’m glad that you can share your experiences with Alex. Autism is so prevalent today, yet few (including myself) know much about it and how it can affect an entire family. My heart goes out to little Alex and to you and your wife, my friend. But I know that your love is the very best help that he can have to navigate this crazy world.

  5. Hey Dave, stranger here, but a stranger that understands completely what you are going through. My younger son (now 4 years old) was diagnosed as PDD-nos when he was 2.5 years old. He used to bang his head horribly when he was upset. Truly it is sickening to watch/listen to your cherubic-faced toddler get down on his hands and knees and smash his forehead onto the porcelain tile in your kitchen. I remember frantically running around trying to stop the fit and figure out what set it off. It was like some bizarre game of charades. During the time period he was self abusing I dreaded going anywhere (parks, stores, even family parties) because there was no way to know what would make it happen. To then have to deal with the stares and/or comments of strangers and family alike, compounded the guilt/shame/trauma of the whole thing. More than anything I wanted my baby to be happy and he was the epitome of unhappiness during that time.

    Sounds like you are doing PECS, that def helped our son. It took the pressure off him, he had a way to communicate until his speech came along. Have you tried GFCF? Going gluten free made a tremendous difference for our son (the casein didn’t make a difference) because turns out he has celiac disease. He used to posture his stomach ( push it down as hard as he could) against tables, balls, arm of the sofa, my knee etc. We thought it was a stim but it wasn’t. Within about 10 weeks of going gluten free, he stopped banging his head. Don’t get me wrong he had a ton of other tantrums and still would bite/kick/hit during them but I was ecstatic to see the head smashing go away!

    When we took him to the pediatric gastroenterologist to have the celiac testing done she told us we had to gluten challenge him. I was nervous to do it, my husband thought I was crazy, he thought the diet made no difference, that the therapies alone were making the difference. We reintroduced gluten; one gluten filled item each day. And each day for four days within about 2 hours of eating it (first day a waffle, next day an English muffin, chicken nuggets, etc) he was vomiting like he had the worst case of food poisoning. It would start with him turning a sickly color, then he would make a keening cry like I had never heard before from him, then finished with copious amounts of vomit until he was dry heaving up bile. Here was a kid that 3 months prior lived on Cheerios, ritz, and goldfish crackers who now could literally not eat more than 3 pretzels without getting violently sick. Now his body refused to let it back in. My husband admitted that obviously our baby needed to be gluten free. The pediatric gi confirmed that she doesn’t often see a response that aggressive. She was especially surprised when he never had failure to thrive, extreme spitting up, anemia or any of the other telltale signs of celiac as a baby. She really thought we were those crazy parents looking for a magic cure for their kid.

    Anyway, sorry that i am rambling but when I hear about another family suffering through the head bashing I always suggest testing for celiac (blood panel can give you markers, endoscopy for full deal diagnosis, but bloodwork was enough for us) or even just try going gluten free without the blood panel. It takes about 10-12 weeks for gluten to leave the body so I suggest trying it for that long.

    Best of luck! Keep loving your boys and chugging along, it will get better!

    Ps – it took my son 10 months of intensive therapy to say “Mahdee” (mommy) and then in 18 months time from then he was speaking in sentences. The more they can communicate, the more their frustration subsides and the better the behaviors get. PECS was the start for us, hope it is for you too 🙂

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