Even though I have shared only mere snippets of my son’s SPD journey here and on our family blog Training Happy Hearts, I bet it is evident to anyone who has read my posts that both my husband and I – along with friends, family and many “lettered folks” – have spent a fair amount of time questioning what diagnoses, if any, best fit my boy.
Currently, my son is officially diagnosed with ADHD with “sensory challenges” or “sensory issues” (since no local lettered folks seem to have the desire to actually use the term “SPD” in regards to our son.) Yet, a full alphabet soup of other possibilities has been stirred about in conversation as well. Letters have included OCD (ruled out by recent survey from neurologist), ODD (never officially looked at yet), ASD (deemed unlikely by neuropysch and neurologist, but therapists think he’s a possible Aspie) and, most recently, Anxiety (suggested by neurologist).
As anyone who is journeying a parallel path knows, a large part of the diagnosis process rests on observations, surveys and conjecture. I’ve recently realized I have failed my son to a degree with these three things. You see, despite observing and sometimes even explaining some of my son’s quirks to the doctors and therapists we’ve seen, I have never considered any of them “stimming”. In fact, on almost every survey I have filled out, I have answered that my son does NOT stim.
So THAT is stimming?
Then, the other day, I watched Elizabeth’s video of her Pumpkin stimming over at Creative Learning Fun. Oh dear. I thought. Is THAT really stimming? I had had a few children on the spectrum in my classes back when I taught public school and their “stimming” was far more pronounced and dramatic. Thus, my vision of what stimming “really” is was as well. When I aw Pumpkin’s stimming episode I recognized what I have for years just passed off as one of my son’s own benign quirks. Not a symptom or a sign, just something he does, particularly when excited by something in a video.
Now, I realize that my judgment may have been incorrect. Watching Elizabeth’s video prompted me to do a youtube search. Some of what I found was more in line with what I’ve always thought of as stimming. Some was very much like what I see my son doing.
Now what?
So, now the question in my head is, So my son stims, but does it matter? His stimming isn’t constant (although it is rather evident almost every time he is allowed time to watch videos) and it rarely affects our lives or relationships adversely (unless you consider the time when I took all three of my children to see Rio at the library and while my 18 month old and four-year old were fine with it, as were all the other children who were there, my six year old son voiced sheer fright for much of this seemingly innocuous and, as well as squirming, calling out and needing me to hold him, did what I now recognize as stimming, which all, in truth, caused mere embarrassment, not a true problem.) So, does it matter? Is it something I need to look into more? Is it a clear sign of ASD that I should discuss with his doctors and therapists who have never had the occasion to experience it first-hand? Does it just speak further of the SPD my son has, even if no one but his father and I really want to call it that? Is it something I need to offer him strategies for? Or, do I just keep on considering it a quirk – part of what makes my son, his thoughts and his actions and reactions unique? Moreover, is it something I should spend time and energy researching and thinking about?
I have not gleaned the answers to any of these questions yet. I am fully open to hearing from others who have faced them, though. I welcome shared experiences, thoughts, links for resources, facts and opinions. And, I thank Elizabeth, who without even knowing it, uncovered a piece of my son’s puzzle that I wasn’t even aware existed.







Comments
Jessica Fuller
Thank you so much for posting that link to the video! My daughter Lilly has done this from the time she could stand. I had always thought it was her way of stimming, but since she wasn’t doing it all the time, just while excited, I never put much thought into telling her OT and Behavioral therapist. I think now I will bring it up a bit more aggressively.
Martianne
It is amazing how this place of sharing helps us each learn more, isn’t it? Good luck with your OT and BT.
Heather Finnegan
Yeah-my little guy does the same kind of things, especially when excited. It isn’t totally obvious, so we haven’t addressed it much either. I wonder if I need to pursue it more to get him as ASD diagnosis so he can get an IEP, as right now he only has SPD and that qualifies him for zilch-we pay for OT out of pocket!
Martianne
I’ve been thinking about you paying out of pocket and wondering if your dr or OT might fight some reasons to “necessitate” the OT. I know our first go with OT was but 6-10 weeks long due to insurance, but at least insurance helped. Now, we are in a round two that is not based on his ADHD dx, I don’t think, but on other “needs” the dr and OT wrote up.
Elizabeth
Martianne,
First of all, thank you so much for sharing your story. I am thrilled that my blog post may have helped in some small way. One thing I want to mention is that this is just one of Pumpkin’s stims. She has several and the hand and finger movements are her biggest one, along with a vacuum cleaner sound she makes. All of this happens when she is excited.. I can always tell when she is loving something when she is doing this.
Do I think there is anything wrong with this kind of stimming? Not at all! It is just one thing that makes her who she is. I think the problem lies in when stimming becomes so constant that you just can’t get it to stop. For example, in gymnasitics class it is constant stimming. She can barely get anything done. She just can’t control it at all. Also, she is getting to the age where other kids notice.. and this does hurt her feelings. She’s very much aware that she is “different” from her peers.
So, while I don’t think it is something to worry about. It is something to be mindful of.. Especially as the child ages.
I will post something later this week with examples of her other stims for people who are interested. I honestly had no idea this would help. So thank you so much for telling me. Always feel free to contact me if you have any questions.
Thank you!
~ Elizabeth from Creative Learning Fun
Martianne
Elizabeth,
Thank YOU for sharing so much of your story, because, as you can see, it not only helps me, but has a ripple effect.
Thank you, too, for the thoughts on stimming and WHEN it is something to do more about than note.
My son does the hand thing – often when watching videos, etc. He also randomly barks at times lately. so far, though, his behaviors do not interfere with carrying on with life much.
Again, thanks!
Martianne
Jessica and Heather,
It was enlightening to me and I am glad to see it is helpful to others. I guess we all need to thank Elizabeth. I’d also be curious if other moms have kids who stim like this but not as often as some of us might expect for it to be called ‘stimming” and if anyone can chime in as to when stimming is something to look into.
Heather,
Paying for OT out of pocket must be crazy! We were lucky to have insurance pick some of it up as our dr and therapists found “need” for it based on “problems” or “delays” with development. The ADHD dx helped, too.
Mama Pants
Well count me among those that have suddenly realized my son stims! Wow. I also just thought it was a quirk. We call it “hulking out” and he does it mostly around food or when nervous. You are not alone mama. For my kid, it helps him and he moves on. Sometimes it takes a while but if we allow it to happen without trying to interfere it’s no biggie at all. So we don’t focus on it. Our attitude is that it happens and he’s done. He’s a quirky lil dude
But if you think it would help furthur a diagnosis, I would bring it up for sure.It stinks that your doctors are unwilling to say SPD. Makes me so mad! (((hugs))) Now you have another piece of the puzzle though. Good luck!
Martianne
I love the “quirky little dude” attitude and often employ it myself.
And, thanks for the moral support re the SPD dx. It is a silly “technical” thing, but one I am getting used to.
Charlie
Yup. Stimming. I had a hard time convincing the pedi that my son stimmed. He didn’t flap and he didn’t spin. He didn’t bang his head. I knew he was stimming. It was too much of the same quirky behavior under the same circumstances.
The problem is, our first line of defense (the regular pedi, teachers, etc) aren’t trained in anything but the severe and they don’t ask the right questions of parents who have no idea what is going on. You simply learn more as you go on. Not a good system.
When people finally started to believe me about my son, I actually broke down and cried. Not from grief, but from relief that someone finally saw what I saw. Thank God I switched pedi and just asked him to humor me. He said he would. Thank God all those Neuro- doctors and developmental people saw what I saw. “Subtle” they said. “Atypical” they said. But they did say, there are issues. And now–FINALLY–we get some help. We were going broke paying for everything because no insurance coverage. Our therapies are also more targeted.
Martianne
So good that you have more help with insurance now and also targeted therapies.
I have yet to have my son get an official SIPT assessment b/c the closest folks certified to do this are both a bit far to get to and out of our price range right now. However, one of the OT’s at my son’s current gym is getting certified to administer the test and is going to see if she can get him on the LONG list for it once she completes her training. Fingers crossed.
Every little bit of knowledge 9and strategy!) helps! As does just acceptance and lots of love – which there is not shortage of, thank God!
Brooke Shumaker
Hey there. We just got th ADHD diagnosis for my almost 6 year old. While I don’t really think he stims, I am having my own aha moment about tics. If you haven’t looked that up, do. Barking, growling, grimaces, blinking rapidly, facial tics (even small) can be related to ADHD as tics. Something I never realized and now another piece of the puzzle is coming into place for the behavior I’ve watched for so long. My son barks and growls when he is overwhelmed and has a slight uneven grimace. I think it is ADHD in his case not SPD. He also probably has ODD.
Good luck working through things.
Brooke
martianne
Stims. Tics and ??. Oh my! I truly feel like I am walking along the yellow brick road at times.
Haven’t been thinking about the barking as tics, but have mentioned it to a few therapists/dr’s who have yet to witness it. Will have to watch it more.
Thanks.
kate blue
my son was doing some “stimming” things that I didn’t know were stimming at the time; my gut just told me that they were excessive and kinda like OCD things -the frequency disturbed me since it interrupted learning and play time so I actually took pictures and sent them to his school therapist and his pediatrician so that they could SEE and tell me what this was (my son has other issues so I knew it was all related) …they suggested a clinic at our local hospital and after some testing there, we started gross motor therapy once a week and we also do OT/PT everyday at home with weights and stuff. I’m happy to say that 7 months later, we have DECREASED the stimming 97%!! Folks really underestimate the power of daily physical activity/heavy weight stimulation/gross & fine motor activities!
martianne
Thank you for this comment. We homeschool and are pretty active, even if not always with concentrated, specific OT/sensory diet stuff at home. But, sometimes, I neglect to attend to these needs and am beginning to wonder of there’s a correlation b/w when I do and when the frequency of the oddities increases. With your comment in mind, I’ll take a closer look.