Never Too Late For a Little Holiday Glow

Jim and Charlie on a walk on a really really cold December day  It's a good thing that we lived for two years in St. Paul. The summer we moved into our 2nd floor duplex (in the Merriam-Grove area, just a few blocks from Macalester College) I ordered two beige LL Bean parkas in size L and in size S. We've packed their puffinesses up through several moves to warmer climes, though Jim's found his parka the perfect thing to wear on a frigid subway platform, especially in the days when he commuted daily to and from the Bronx.

Thanks to a winds of up to 50 mph yesterday, it was c-o-l-d, with cold air coming in through the windows and gusts howling like in some Disney movie. Jim and I were still able to put our "keep Charlie moving in and out of the house, and from activity to activity" about every 1 1/2 – 2 hours schedule into operation largely thanks to the parka. Jim took Charlie for an early morning ride to see his school and bagels and then dashed in for his parka and Charlie's (much less puffy) blue one. Charlie seems pretty resilient to being outside when even in very cold temperatures; needless to say, he was quite content (Jim too) to stay inside after that, heat up frozen items in the microwave, and watch some videos. The two of them went out another walk later in the afternoon ("when the wind's not blowing, it's not so bad," Jim quipped before they trod off) with the same result, Charlie being quite glad to warm up surrounded by blankets on the old blue couch.

Inbetween those walks we joined an indoor pool. Charlie had been very eager to put on his swimsuit (he wore it in the car—he's not one for pulling on sweat pants over his suit). But once he saw that the pool was not the YMCA pool we've gone to for the past three years, he said "no swimming" and wouldn't budge. I suspect it will take him some time to warm to a new pool environment and there's really no rush. This pool does have better hours, with open swim time three times a day (at night, too). I always get ready to jump in the pool with Charlie—he's a far, far better swimmer than I'll ever be, but sometimes some extra reminders are needed about not going under the ropes where people are swimming laps—and frankly I was ok not having to jump and walk out with wet, or rather freezing, hair. 

We were very fortunate that Charlie's sitter from last summer is home from college and she came to visit yesterday. She came over two times or so every week in the summer and Charlie really enjoyed her company. Yesterday, he greeted her with a little secret smile. While she was visiting, he kept saying "Arielah! Versha! Peggy! Claudette!". Those are the names of other therapists from when he was 2-4 years old and we lived in, respectively, St. Paul and St. Louis, Missouri. I suspect Charlie was perhaps mentioning the former therapists so avidly as a way of telling himself who his sitter is "like." She, like almost all of Charlie's therapists when he was little, is a college student and he always looked forward (posting himself at the window) to seeing them. Indeed, in those first two years of home ABA, the therapists really did not feel like "therapists," but part of a little community we were all creating to take care of Charlie. 

You can bet it was cold, those two winters we spent in St. Paul, but there was always so much good feeling. We had a few glimpses of that sense of "people all around us" today. There was our friend's visit (with the promise of stopping by again during Spring Break and in the summer). And, I called the doctors' office and had a nice talk with the office manager who assured me, of course we can come back with Charlie. "Things happen," she said, and she reiterated that the pediatrician who'd seen Charlie on Saturday had remained very concerned about him.

It's seemed that, more and more as Charlie has gotten older, the world have become a colder place. People often (understandably) think he's a full-grown man at first and are very puzzled when he doesn't respond. I can't tell you how many times he and I have been in the check-out line and we've been asked "are you together?". I want to say, "how could we not be?" but then I remind myself that what's so obvious to me, engrossed in our life with Charlie, is most likely not at all apparent to the casual observer. If I were holding Charlie's hand or he had some more obvious physical trait signaling that he's disabled, I guess people might "get it" more quickly. Too, sometimes, when people see that Charlie is "different"—especially when he's in distress, even minimally—the immediate response is fear, is being threatened.

So  little reaching out these days when Charlie shakes off our hands, when there's no more "he's so cute!"—that gesture goes a very long way. I think I may even be starting, albeit a bit belatedly, to feel a little holiday glow.

Without even having to wear my St. Paul parka.

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Comments
16 Responses to “Never Too Late For a Little Holiday Glow”
  1. emma says:

    Dimitri likes it when people who know him visit, and so do I – it does go along way. Dimitri’s physio therapist just came (which is why I can actually type something now!). She is always greeted with a big smile although he is disappointed to have to do therapy when he really wants to show her his toys.
    It’s nice to have a small community.
    (the weather here is still around 20c, which is not normal and I’m covered in mosquito bites, we could do with a little cold – but not too much!)

  2. I am sorry to hear that people have reacted in fear to your son.
    My son Conor, who won’t be 14 until mid-February, is now 6 feet tall, with a deep voice etc. People have tended to be very nice to him around here and that hasn’t changed as he has grown.
    As emma commented the difference might be that we live in a small city in an essentially rural Canadian province. With a small community many people have seen Conor with me many times over the past 10 years. He is familiar to many people.

  3. autismvox says:

    I guess it’s the reality of things, Harold. Fortunately, with a little time and effort, people come to understand. (Unfortunately, some of those who have seemed most wary of Charlie’s size were the teaching staff at his in-district ABA program at the middle school!) Connor is 6 feet, wow! That’s lovely about your town; I think I had some nice glimpses of a similar sort yesterday. Charlie’s height is accentuated because I am so much shorter than him; he dwarfs most of the teachers who now work with him, and they make nothing of it.
    20c, Emma—I don’t mind the cold, certainly less than mosquitos! (Which absolutely love me). We’ve a couple more visitors coming these next couple of days and hope to make a visit or two for New Year’s.

  4. emma says:

    I’m just reading a little about the halo effect (and reverse halo effect)and implicit personality theory – I think this is/will be playing a role in Dimitri’s life in peoples perceptions of him. Also very interesting reading about teachers bias towards children with LD labels. (slightly gloomy reading for the hols?)

  5. autismvox says:

    Maybe gloomy, certainly relevant. Labels are tricky and we got reminded of this when we were at the ER. By the time we were in an exam room and a nurse came in, we didn’t even think to tell him that Charlie’s autistic. He started asking Charlie questions; Charlie didn’t respond immediately; we chimed in; the nurse got mad at us and told us “I want HIM to answer.” We told him that Charlie’s autistic and he said “no one told me.” Leaving Jim to muse, d**’d if we do (tell) and d**’d if we don’t—-often when we’ve made a big deal to tell everyone, people say “I know, I know.”
    What about that “reverse halo effect” being called the “devil effect”?……

  6. farmwifetwo says:

    We live near a small town, but in Ontario and outside a rural village.
    Since I have never hid them, those at the shops/restaurants we frequent recognize the younger on sight and have always been kind and curious. They don’t expect replies from him but always speak to him. They always ask how things are going and are truly interested in knowing the answers.
    Sometimes I wonder if it wouldn’t have been better raising him in a city with more services…. but… that “everyone knows you name” feeling I think is even more important.

  7. Regina says:

    You found a pool – great!
    I hope that Charlie gets used to it very soon and is able to enjoy swimming there as he did before at the Y.
    As far as the d**d if you do and d**d if you don’t – that’s happened to me; turns out that the nurse thought that I was being an over-solicitous “helicopter” parent. Now I leave a gap until a response doesn’t happen and the adult looks at me like, “what gives?”. “She may not have understood what you asked – she has autism”.
    Even though we live in a city, although not a large city as they go – so far, *knock on wood*, people have been friendly to our daughter (at least in the circles and routines we run in, people are used to seeing her and us together). I hope it can continue for as long as it can.

  8. Regina says:

    You found a pool – great!
    I hope that Charlie gets used to it very soon and is able to enjoy swimming there as he did before at the Y.
    As far as the d**d if you do and d**d if you don’t – that’s happened to me; turns out that the nurse thought that I was being an over-solicitous “helicopter” parent. Now I leave a gap until a response doesn’t happen and the adult looks at me like, “what gives?”. “She may not have understood what you asked – she has autism”.
    Even though we live in a city, although not a large city as they go – so far, *knock on wood*, people have been friendly to our daughter (at least in the circles and routines we run in, people are used to seeing her and us together). I hope it can continue for as long as it can.

  9. Regina says:

    On a tangent, I am struck that our kids are so “grown up” and how quickly that can happen. Our daughter has always been a sturdy and athletic girl on the upper end of the growth curve, but this year she grew a lot and is now taller than I, her sister and our other female relatives are, and she and I might as well be sharing the same wardrobe. People are often surprised that she’s younger than they expect. It stands out to us because her older sister hit the same physical milestones a couple of years later. I know that kids are more precocious these days, but we were caught kind of unawares (smile).

  10. emma says:

    “Devil effect” – oh, yes, saw that bit – and just experienced some in the supermarket!
    “d**d if you do and d**d if you don’t” unfortanutaely had similar experience in the hopital, with a nurse practically shouting at me as to why Dimitri was wearing a diaper, he was nearly 4 and had been status epilepticus. Even worse, with every change in staff we had to explain again that Dimitri is disabled….
    I’ve often wondered as to whether a smaller, more rural community would be better for us – I thought I may be viewing things through rose-tinted glasses? Our “small community” is just our local neighbourhood, we are out and about often enough for people to know us, but I still feel peoples attitudes are changing as Dimitri gets bigger.

  11. emma says:

    “Devil effect” – oh, yes, saw that bit – and just experienced some in the supermarket!
    “d**d if you do and d**d if you don’t” unfortanutaely had similar experience in the hopital, with a nurse practically shouting at me as to why Dimitri was wearing a diaper, he was nearly 4 and had been status epilepticus. Even worse, with every change in staff we had to explain again that Dimitri is disabled….
    I’ve often wondered as to whether a smaller, more rural community would be better for us – I thought I may be viewing things through rose-tinted glasses? Our “small community” is just our local neighbourhood, we are out and about often enough for people to know us, but I still feel peoples attitudes are changing as Dimitri gets bigger.

  12. Club 166 says:

    Glad to hear that you’ve found another pool. I’m sure that Charlie will warm up to it in due time.
    It’s been cold here, too, and we’ve been getting a bit of cabin fever. Guess we should go out and walk.
    Joe

  13. autismvox says:

    Bit more of the “devil” things going on for about 1/2 the day here too…….. Sometimes the walls and room just never seem big enough!
    It’s the rural “vs” urban environ theme recurring in this comment that intrigues me. Have had the kind of day in which having immediate, easy access to a wide open space where Charlie could _run_ would have been very helpful. Plus, much as Jim and I prefer being in a city environment with all the bustle and action, Charlie and random, quite loud noises, are not a good mix right now.
    New Jersey where we live is mostly lots of medium and small towns, some with more of a “small town” feel, as far as people knowing Charlie, people remembering Charlie when he was much younger. Other towns are much more “suburban,” without sidewalks (and streetlife), malls and plazas and, to us, less of an organic sense of community. Sometimes the big suburban towns have a reputation for better services and educational systems and schools.
    But, in keeping with the “rose-colored glasses” vein, I wonder if the grass always seems greener, the neighborhood more friendly, “somewhere else”?

  14. Good luck with the new pool. Today was Dr visit for Matt and I decided to bring Nick along as the triennial IEP needs vision and hearing test and he bangd his toe months ago and redid it yesterday. Dr was not sure his toe would be ok – went to Radiology for x rays and back next week for follow up.
    For Matt he had hemoglobin per my request, ins denied request for blood work, had to coax Dr to do Rx for Risperdal and Matt got two shots.

  15. autismvox says:

    @Regina, we were caught very unaware too—I really was hoping that Charlie would have a few more years before Jim had to start helping him shave! He and Jim share socks now and soon it’s going to be pants and shirts.

  16. autismvox says:

    @Regina, we were caught very unaware too—I really was hoping that Charlie would have a few more years before Jim had to start helping him shave! He and Jim share socks now and soon it’s going to be pants and shirts.

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