Playlist for this blog post:
- Storm – Jose Gonzalez
- Breathe – Alexi Murdoch
Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a “stereotypy”, a continuous movement. For Desmond, stimming occurs while seated, rocking back and forth, regardless of where he is sitting. When he was younger, it meant spinning round and round in circles. Another stim for Desmond is spinning cars, though I really can’t say that I see a difference in his enjoyment whether he is stimming or playing with the cars. He loves anything that spins and will enjoy playing with items that roll or spin all day long if he could. His preferred stim though, is rocking.
Desmond wears a Spio (http://www.spioworks.com/) compression vest under his clothes daily from the time he wakes up until we get home from school/work. We have to take it off of him around 5pm or else he will never go to bed. (Think about it – you’re compressed all day, and then suddenly there’s this big energetic release once that compression is removed.) This garment helps regulate Desmond’s vestibular system and provides him with the extra sensory input that he needs throughout the day to not stim as often or as severely. Without the Spio, he will rock quite frequently because he has such a high vestibular / sensory need. Another way this shows up is by Desmond walking around and nearly running on his tippy toes. Again, this is something that increases if Desmond is not wearing his Spio. Like this weekend, it was 86 degrees throughout the holiday weekend here in Washington. While that may sound nice (and don’t get me wrong, we did enjoy the sun!), let me assure you, it’s not nice in WA wherein only 20% of the entire state has air conditioning. (What is wrong with these Washingtonians?!) Even the newly constructed apartments going up around town are not constructed with air conditioning. We have a few portable A/C units, one in Desmond’s room and one in our main living room, that attempts to keep our home somewhat tolerable in that kind of heat. Due to the heat, however, Desmond was unable to wear his Spio, which caused him to need to stim more, i.e. more tippy toe walking, more rocking and humming, and less focus. Anytime we see an increase in stimming, we tend to worry; however, in this case I believe it was due to Desmond not wearing his compression vest and being uncomfortable teething all weekend. While these are certainly mild behaviors, it is one outward expression of Demsond’s autism that anyone can see.
Desmond stims at restaurants in those hardback wooden high chairs, which is another reason we don’t go out to eat all that often as a family. If we do, we go at off hours to avoid the crowds and the noise. There was one experience wherein Adam’s parents were visiting us recently and we all went to Tipsy Cow (local sit-down burger joint) on a week night. It made me nervous because any kind of change to Desmond’s routine or schedule can throw him off completely, but I also told myself, we can’t always live life according to “The Schedule” because life happens! There are unexpected twists and turns sometimes. And dammit I’d love to go out to eat. (And then I’m instantly reminded of the show Parenthood and their son Max, who has Asperger’s. Deviating from the schedule equals epic meltdowns on that show. I should have known better.) When we arrived, it wasn’t too crowded but as we were seated and placed our order, it got packed for the dinner hour. It was loud, there were people everywhere, tvs on all over the place showing different shows, and all kinds of smells. Desmond was rocking really really hard, so hard that he could’ve easily rocked his chair over and flipped it if I hadn’t been holding on to it, and I was worried that he would hurt his back from all the hard rocking. He has bruised his back a few times doing this. I did everything in my power to distract him and to keep him from rocking, but the overstimulation was simply too much for him to take. I wasn’t able to eat because I was so focused on him and feeling horribly that I put him in that situation wherein he had the potential to be overloaded. That was also one day after we received Desmond’s official diagnosis of autism. I remember on the drive back home from dinner, breaking down in the car and just sobbing for what I willingly put my child through, for the life that I imagined that was now likely very much gone, for something so simple, going out to dinner with family, and how that seemed impossible now, and also feeling the anxiety and overwhelming stress that must’ve been felt by Desmond to cause him to rock so hard and so much. I also felt guilt as I saw many different families looking at us strangely, and looking at Desmond strangely. I wanted to scream, but I held it all down and inside until I got in the car to drive home, and even when I did sob and release, I did so quietly because I didn’t want Desmond to hear me. It always breaks my heart when I walk into Desmond’s classroom at school to pick him up and see him rocking and humming in a corner by himself, away from all of his peers. His teachers do everything to engage him and to keep the other children engaged and happy too (seriously, Desmond’s teachers are Saints in my book), but they also understand that sometimes Desmond just wants to be on his own. If he’s stimming, he is doing it to provide himself comfort, whether he’s stressed, anxious, bored, or just looking for a little extra sensory input. Stimming reduces meltdowns and increases focus for a person with autism. I have to remind myself that it’s his natural process of alleviating anxiety, stress, and sensory overload, as well as his way of centering himself. It’s really no different than me breaking out some ujjayi yogic breathing in the middle of a stressful meeting, or sitting at my desk meditating.
I’m also writing this so that you all know what that means when you see a little boy or a little girl out and about and he or she is rocking and humming, or flapping their hands, or smelling objects, or snapping fingers, or even more seriously and severe, banging their heads against a table, wall or the floor. Don’t judge those parents who are out and about with their children who seem to have these extra needs. If you see a child breakdown in the middle of an airport, banging their head against the floor, show some compassion for that parent and that child. Don’t stare. Ask how you can help, if you can help. I think the same courtesy should be extended to all parents, really. We’re all just trying to do the best that we can on any given day.
“For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You’d be surprised how far that gets you.” – Neil deGrasse Tyson
Very well-written. Desmond is lucky to have you.
Even though I have a niece and a nephew with autism, I learn so much from your blog. thanks, Jenny, for sharing with us
Thank you for sharing your journey with us. I know it will be rough at times (I’m sure it will seem to be more often than not), but he is so lucky to have you two as parents ❤️