What We’re Getting Charlie For Christmas

Charlie leads the way on a December day bike rideI am originally from California and, until I went "back East" for college in the '80s, never had a winter coat. (We did "layers" under a jeans jacket or sweater)   I do like the changes in the seasons. And, I like the cold, except for the fact that colder weather tempers Charlie's and Jim's bike rides and outdoor activities more generally. 

Monday it was cold but not as cold as it had been and they went on a bike ride, breaking a three-day bikeless streak. That's the longest Jim and Charlie have gone without a bike ride since the late spring and summer (and even though it was a very rainy summer—somehow they always seemed to find that window when the clouds parted). Charlie's game to go on walks but nothing beats a bike ride for a good aerobic workout. Charlie and Jim were gone for the better part of an hour with Charlie leading the way the whole time.

There's no question that Charlie benefits from regular (as in a couple times a day) exercise, preferably of a vigorous, aerobic sort. We're wanting to get exercise/physical activity at regular, and frequent, intervals into his behavior plan, as a tried and true strategy for helping him focus and keeping his anxiety in abeyance. On the one hand it seems like such an obvious thing to do. 

On the other hand, the difficulties Charlie had in his former placement in a self-contained classroom located in a large public middle school have led to us realizing, you can't spell things out too much and too carefully. And, sometimes a few simple, basic accommodations can make all the difference.

Charlie, as I've noted, takes a number of medications. We started him on some meds when he was 7, and only after a lot of what could be called soul-searching. We still often feel as if giving Charlie anti-psychotics, SSRI's, anti-epileptics, anti-anxiety meds, is still more of an unofficial experiment than a proper treatment protocol, and I suppose it is. Nonetheless, we wouldn't have continued to seek out neurologists to prescribe medication for Charlie if we didn't think they were helping him and they (well, some of them) seem to (just not stimulants like Ritalin). A December 14th  Washington Post op-ed by Great Barrington (MA) pediatrician Claudia M. Gold, M.D., approaches the medication issue with caution. Dr. Gold lauds the recent Pediatrics study on the benefits of Early Intervention and, while noting that she has often prescribed various medications for autistic children, calls for restraint and exhorts other professionals not to overdo it:

If we describe Evan [a child on the autism spectrum] as “irritable’’ or “explosive,’’ he might be a candidate for antipsychotics, which have been shown to be effective at eliminating this behavior. But another way to describe the behavior is “dysregulated.’’ These children have a very difficult time with self regulation. They get overwhelmed by sights, sounds, and smells. They may have rigid obsessive behaviors that serve to protect them from the barrage of disorganized sensory input they experience.


Contemporary research integrating developmental psychology and neuroscience demonstrates that children learn to regulate emotions in relationships. Intense experiences that are beyond the capacity of a child to self-regulate can be co-regulated with the help of people close to him.


I was interested to note Dr. Gold's highlighting of emotions and, specifically, of
emotional regulation, and dysregulation, in autistic children. The latter is certainly something that Charlie struggles with. Especially when his anxiety, fears, worries, uncertainties are peaking, he seems to manifest his feelings in what he does—and being able to tear down a sidewalk at full speed or pump and pump the pedals of his bike so that he whizzes down the street are certainly preferable to other physical things that Charlie can do/has done. 

You guessed it. An exercise bike is at the top of Jim's and my list to give Charlie for Christmas.

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Comments
17 Responses to “What We’re Getting Charlie For Christmas”
  1. Jennifer says:

    An exercise bike . . . what a great idea! 🙂
    (I’ve asked two principals now about having an exercise bike or treadmill for the classroom (I picture a tray for kids to put a book or other classroom work on. . . ) but was told the liability would be too much. Meanwhile, I offer a “run to the fence and back” break in the middle of the morning.)

  2. bonnie says:

    I was thinking exercise bike the whole way through! What an awesome gift, I’ll bet he’ll love it!
    They have a motor room at Casey’s school, and every school he’s been in did, I think it makes all the difference. Swinging has always been especially helpful for Case, like biking is for Charlie.

  3. Linda says:

    Maybe put a map next to the bike for Charlie’s indoor rides to have the rides have purpose. “Ride to Mom’s office”, etc. He might enjoy racking up the miles (“Three miles today so far…”).
    Great gift!

  4. jypsy says:

    You might want to look into bike trainers as an alternative since he already has a bike

  5. ange says:

    yeah! We have an elliptical machine right on the first floor. Guess who uses it more than us? Bubba loves that thing (so at least we dont feel guilty for NOT using it).

  6. Theodosia Skye says:

    I’m a lifelong native of California too, who just moved to Vancouver Canada and experienced my first snow. 🙂
    The medication issue is difficult, and made more difficult by all the people around you who are leaping forward to tell you about the many ways you’re wrong, and why don’t you just simply [insert whatever worked for their kid here].
    I chose to put my son on ADHD medications at an early age, and wow, it was not an easy decision. It certainly had nothing to do with wanting to “drug him to shut him up instead of parent”, like so many people want to accuse. It was because so much of his behavior indicated that he was obviously desperate to have some way to organize his thoughts and behaviors, and get out of his habit-loops.
    The first day he took the meds was the first day he also sat down and “acted out” a scenario with his toys in a linear way. Meaning, instead of just rolling his cars around the carpet and repeating getting gas over and over, or crossing the finish line repeatedly, he ran a Nascar-style race complete with all the details, from start to finish. He even had me draw the track on paper to match one he’d found on the internet. Later that day, we were on a hike, and he turned to me and told me, “Mommy. I am SO happy.” He’d never said that to me before. I knew we were on the right track.
    It took a while to balance the dose, and I still work on that (too much or too little can cause major tantrums). I’m not sure if I would have been brave enough to try all this if I didn’t suffer from ADHD myself (I too greatly benefit from medication, and wish that I’d had it as a child instead of having to live with the “lazy” and “not living up to potential” labels that my teachers and parents consistently applied).
    It’s obviously not the answer for all children, nothing is. But I did know another mother who told me her boy with autism went from speaking monosyllables to speaking whole sentences immediately after going on stimulants. I really do think there are quite a few of our kiddos out there who just need that little boost to their neurons to get them to fire off and connect a bit better.
    I’ve never regretted the decision to put my son on stimulants, and recently I’ve even been able to reduce his dose a bit.

  7. Jill says:

    Has Charlie ever ridden an exercise bike? You might want to let him try one to see if he likes it before committing yourselves to purchasing one.
    My husband is a long-distance bicycle rider and he rides a trainer when the weather is too foul to go outside. He says it’s okay, but it’s a poor substitute for the real thing.
    A large part of the bicycling experience is going somewhere, reaching a destination and all the sensory input that accompanies riding outdoors.
    Charlie may not see the point of peddling and not going anywhere.

  8. Louise says:

    So do you think that Charlie’s difficulty is the nature of his emotions themselves, or that he cannot control his responses to his emotions? What’s your theory?
    Controlling responses to fear, anger and desire is certainly a power that all of us have to develop, and most of us still work on everyday. An adolescent NT boy has plenty of trouble, too – which is probably one of the reasons that sports are so heavy emphasized for them in high school. Exercise is one of the prescriptions written for people suffering from moderate to severe depression, as well.
    This raises an interesting question: are sports and physical activity useful for dealing with difficult emotions because they allow a release/distraction, or because the exercise itself produces neurotransmitters that moderate the brain? If Charlie could take a pill that gave him the same effect, would he prefer it to the bike?
    Probably not! Moving your limbs feels good in more ways than just the psychological.
    It doesn’t sound like you mean to use the bike as a replacement, rather as an addendum, on those days when weather doesn’t permit. An exercise bike ride while watching his favorite videos really gives *him* the control – no more depending on Dad or the weather to make it happen.
    I hope you all love it!

  9. Regina says:

    Hi Kristina,
    An indoor ride sounds like a great idea for a gift. I’m kind of with the other folks that if you haven’t tried one out – you might want to try it before purchase, and/or consider the trainer that Jypsy mentioned. As for the road boredom (because there’s no road), maybe a video or some other form of virtual reality? I can’t vouch for these guys – the link is just to give you an idea/examples.
    Virtual Experience DVD Catalog
    http://www.vitadigitalproductions.com/catalog/dvdlist.html
    Happy holidays.

  10. Regina says:

    Hi Kristina,
    An indoor ride sounds like a great idea for a gift. I’m kind of with the other folks that if you haven’t tried one out – you might want to try it before purchase, and/or consider the trainer that Jypsy mentioned. As for the road boredom (because there’s no road), maybe a video or some other form of virtual reality? I can’t vouch for these guys – the link is just to give you an idea/examples.
    Virtual Experience DVD Catalog
    http://www.vitadigitalproductions.com/catalog/dvdlist.html
    Happy holidays.

  11. MATeacher says:

    We have an exercise bike and a treadmill at our school. Some days they are the most important pieces of equipment we use.

  12. MATeacher says:

    We have an exercise bike and a treadmill at our school. Some days they are the most important pieces of equipment we use.

  13. autismvox says:

    Thanks for all the suggestions! I was hoping to get such.
    Charlie’s used an exercise bike in his old school and apparently liked it a lot (I have to check on the brand—“Life something”).
    We’re not terribly worried if he doesn’t like the bike, we’ll use it. In the cold, even while he’s game to bike, the realities of getting cold hands and extremities is there, and those have been known to lead to him getting upset. Plus of course once it snows and there’s ice, bike riding isn’t an option, but he does need his exercise and it would be good to have an option in the house. (Versus having to get ourselves to a gym or indoor pool—haven’t had such good experiences at indoor pools in the past year.)

  14. Viverrine says:

    I have Asperger’s and used to have an exercise bike as a kid, after physically wearing out four mini-trampolines—I personally liked it a lot more than *having* to choose somewhere to go and used it far more than I ever did the real bike! Still, everyone is different so I would still agree with the “try before you buy” advice.
    One thing that hasn’t been mentioned, though—I get the feeling that repetitive motion is potentially very addictive to those of us on the spectrum, certainly it is for me. If this turns out to be the case for Charlie, you might need to acquire a timer and establish some limits. I know that when I got my exercise bike I pedaled the equivalent of 50 miles the first day, leading to severe cramping the next two days, and very soon wore out the odometer.
    Even now if given unrestricted access to exercise equipment without a timer, I will often keep going, enjoying the sensations of movement but missing the signs of exhaustion, until I drop from dehydration sickness.
    I do agree very much about the benefits of exercise, just wanted to add that caution as it doesn’t seem anyone else has mentioned it and “too much exercise” is rarely a problem for most neurotypicals.

  15. Viverrine says:

    I have Asperger’s and used to have an exercise bike as a kid, after physically wearing out four mini-trampolines—I personally liked it a lot more than *having* to choose somewhere to go and used it far more than I ever did the real bike! Still, everyone is different so I would still agree with the “try before you buy” advice.
    One thing that hasn’t been mentioned, though—I get the feeling that repetitive motion is potentially very addictive to those of us on the spectrum, certainly it is for me. If this turns out to be the case for Charlie, you might need to acquire a timer and establish some limits. I know that when I got my exercise bike I pedaled the equivalent of 50 miles the first day, leading to severe cramping the next two days, and very soon wore out the odometer.
    Even now if given unrestricted access to exercise equipment without a timer, I will often keep going, enjoying the sensations of movement but missing the signs of exhaustion, until I drop from dehydration sickness.
    I do agree very much about the benefits of exercise, just wanted to add that caution as it doesn’t seem anyone else has mentioned it and “too much exercise” is rarely a problem for most neurotypicals.

  16. Jen says:

    I work with two boys who very much enjoy the treadmill. One of the two, I just recently started teaching him how to use the treadmill. I just took some video of him on there this weekend, and let me say, I am sorely disappointed I didn’t take day one video, because I don’t think this kid has ever learned anything so fast. Both of these kids though, we accomplish so much more after 5-10 minutes of exercise, and this makes it possible to do in the winter.

  17. We have an ex bike and Matt will not go on it, but Nick uses it almost daily. Maybe that can be a goal since his aide is coming over to do respite on holiday break while I go to the gym. He will also help with the bongo drum and drum set to get Matt to switch from wacking walls to the drums. I hope, enjoy your CA visit, weather has been in 70s and almost 80 today in LA.

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