My boy exists at once in overlapping realms. He is here, but also in another place, a place where I cannot follow. His realm is a realm of music. As it overlays my own, I can sometimes glimpse its edges, sometimes make out a silhouette. I catch something in the corner of my eye; I reach out and feel it like a mist against my hand before it slips away.
This is not about hearing and listening, this is not about sound or song. This musical realm is so much greater than that. It is, at its core, a place of vibration. The vibrations are a music that my boy can feel, taste, touch, hear, and see. It is a multisensory language in which he is perfectly fluent. He can create it with his hands, his mouth, his feet. He can chew it; he can pound it into vibrant existence; he can shout it, howl it, screech it; he can blow it, click it, whisper it. He can measure it, map it, and sometimes he can use these calculations to approximate the verbal speech of my world. Sometimes. When the music moves him to do so. Sometimes.
You hear him making strange and senseless noises, but I know different. I hear him singing joyously the song of the microwave’s hum, of the vacuum’s roar, of the truck’s engine, of the chirp of someone’s cellphone, the shriek of the kitchen timer.
I see him chewing gravel and feeling, listening to the crackle and grind in his inner ear. I see him dumping coffee beans on the floor to orchestrate a wildly raucous staccato, like heavy rain on a tin roof. I see him slapping tiles and bricks and walls and windows, licking them too, in a symphony of feeling, hearing, tasting, seeing.
My boy is master of his realm. He is its conductor, its composer, its musician, and often, its instrument. He firmly rejects what does not belong in his song. “Come sit,” we say, but his song is a song of movement. “Eat this,” we say, but it doesn’t taste of his song, it does not crunch in his mouth like the percussion of his orchestra. “Do this,” we say, but it is often irrelevant to his music at best, a painfully discordant note at worst.
Sometimes our world combines magically with his, playing a delightful harmony to his melody. He joins joyously, laughingly, exuberantly with us. He learns what we offer him, and uses it in his song. His song grows with him and he is growing, growing. He is blossoming. We see him and he is rhapsodic, glorious, ebullient.
Never change, I think, never change, I pray. You are perfect. You are indomitable. You are my own sweet swan song.
“I’m just so tired of making him cry,” I croaked to my husband on the phone, tears streaming down my face. I had just gotten home from what was to be our last feeding therapy session at the OT center R attended twice a week.
“If they don’t know how to treat him with respect, if they can’t see how amazing he is, we don’t need them. They don’t get to treat him like that. No way. I don’t want him back there, never.” My husband tells me intensely, trying and not quite succeeding to keep his voice down at work.
“I don’t know what to do,” I whisper, “we waited 6 months to get in there, and he NEEDS the help, we can’t let him starve. I don’t know what to do, but I agree with you, I can’t take him back there. I can’t let her do that to him again.”
“We’ll figure something out,” my husband says soothingly, “it will be okay.”
It was the last week of November. R had started feeding therapy at this center, we’ll call it Center A, in September. R eats only 3 foods, none of which are particularly healthy, and has a great deal of anxiety, rigidity, and sensory issues surrounding food. He is also unable to use utensils. Sometimes he goes through periods of total food rejection, and fasts for days, or sometimes weeks (relying on breastmilk and pediasure instead). We were first referred for a feeding evaluation at the hospital in March. We would not get a spot at Center A, an OT center near us that does feeding, until 6 months later due to the long wait list. There is only one other out-of-hospital center (which I will refer to as Center B) that offers feeding therapy in our area, and it is twice as far from our home as Center A.
I’ve written before about R’s anxiety. It is pretty extreme. He cannot go to new or unfamiliar places without screaming and crying the entire time. If we want a new place to become an accepted “safe” place for him, we have to practice going multiple times per week for several weeks. At Center A, it took 5 weeks of going twice weekly before he was able to be there without melting down the entire time. His feeding therapist, an occupational therapist specializing in feeding, seemed taken aback by his extreme reaction to the center. The center has lots of toys, a fun gross motor gym with the kind of equipment R, and most kids, love– ball and foam pits, trampoline, enormous exercise balls, platform swings, spinning swings, a sliding board, and more. I tried again and again to explain to her that she needed to be patient, that if we give R time and space he will adjust and go from screaming the entire time to laughing and engaging with joy. She did not want to be patient. She wanted to treat his anxiety like bad behavior, and be firm and insist that he engage in the therapy session. I felt like working on his transition should be the first goal, not diving right into the feeding goals. She complained on week three that we were not doing any feeding, and he needs to be there for feeding. He was making slow progress adjusting to the center, and it frustrated me that she didn’t see how valuable that was, how far we had come. She continued to try and place demands, and made passive aggressive remarks about the things I would not back down on (“Are you going to breastfeed him until he’s in college?” when I insisted on allowing him to breastfeed to soothe himself). She also made comments about him personally which I found offensive, such as “I don’t know why kids like him have to get so fixated,” and “It always seems like there’s nothing going on upstairs with these kids, but sometimes they prove you wrong!” At a brushing seminar she asked us to attend, she told the class that Sensory Processing Disorder (which is part of R’s Autism) is like a moldy pie, and you need to scoop out the mold. Comparing our children to moldy pies? That was the best analogy she could come up with? No thank you. Still, we kept going. Our options were so limited, and she did have some valuable ideas for implementing at home, with which we saw some small progress. In person however, it was a nightmare. I began to feel that we were just going there to make my poor child cry. After 5 weeks he had conquered his anxiety to the center. He walked in happily and went straight for the toys. He loved the gross motor gym, and would happily swing and run around. But his therapist was not satisfied. She wanted him to work on feeding, and wanted it to happen only in the feeding room (a room that still scared him), and she wanted him to engage in the activities she had prepared for him. Those activities were inappropriate for his cognitive ability level, and coupled with his low receptive language, it was impossible for him to participate. For example one day she wanted him to build a snowman with mashed potatoes, and use raisins for eyes, baby carrots for arms etc. He doesn’t know what a snowman is. He doesn’t understand or engage in symbolic/pretend play. The entire exercise was completely over his head. Add to that his anxiety around the new food items and textures– the very anxiety such an activity was intended to mitigate in a more-abled child– and R was completely overwhelmed. He would just cry and try to leave. The therapist continued to grow frustrated with R. It seemed she viewed him as “noncompliant,” refusing to acknowledge the very real and valid fear and anxiety and sensory overload that he was experiencing in her care. Despite all the time that had passed, she had also still not formed a connection with R, something that usually happens very early on with his therapists. Each week we took him, on Tuesdays and Fridays, and I watched him go from happy and smiling in the gym, to crying, afraid, and overwhelmed in the feeding room. Then he would be released for another break in the gym, recover his composure, only to be brought back into the feeding room and have it all torn away again. Four and five times per session he was taken back to the feeding room and made to cry. She had begun forcing him to touch the foods, by quickly tapping a food to his mouth, or by using hand-over-hand to have him briefly hold a food item, such as a potato or carrot. This was always stressful and upsetting for him. It began to feel so cruel to me. I struggled with trying to decide if this was for his own good– with his severe ASD and GDD was this the only way it could be done? In my gut it felt wrong. I kept telling myself, we’ll give it one more week. If it doesn’t improve, or if she treats him more harshly we will stop. Some afternoons I was so sure we would quit that day and not go back. But then later I would cool down and second guess myself. Maybe I’m being too emotional as the mom. Maybe I need to give it more time. Perhaps we should give it 3 months before making a decision.
On the day that we quit, his feeding therapist asked me not to be in the room. She said I was a distraction, that he clung to me, and that the reason she wasn’t making a connection with him was because I was always between them. I have always been present in the first months of therapy with new therapists, and I have never before seen my presence inhibit the forming of a bond between the therapist and my son. However, that was always at home, not at a center, so I decided to give her a chance. I knew I could watch through the two-way mirror in the parent observation room.
I then watched through the window as she instructed his ABA therapist, who remained in the room to assist, to hold him in his chair so that he could not get up and move away. She then brought out cream cheese and food coloring and wanted him to finger paint. I had already informed her in the past that R does not understand art play- he does not scribble with crayons, he is not interested in paints or playdough. EI group used to try and make him participate in their art activity. One day they stuck his hand in the glue and he burst into hysterical tears. We soon learned that he finds soft/wet/messy textures aversive. After that he would cry at the sight of paint, glue, and even play dough. This was all information I had already given the feeding therapist- indeed, a major part of his feeding therapy goals was to work on making wet/puree textures less upsetting for him so he could eventually eat them. I suppose the therapist thought finger painting with cream cheese was a good way to explore that texture in a fun way so it wasn’t scary. For another child it may well have been. I thought by now she understood that for him it certainly wasn’t. He didn’t understand it, so it was not fun, it was terrifying. He refused to touch the cream cheese and kept trying to scramble out of his chair, but was held in place by his other therapist. I watched the feeding therapist grab his hand hard and pull it to her, as he struggled to pull away and cried louder and louder. She then smeared cream cheese all over his hand while he screamed in pain and terror (remember, an aversive texture feels physically painful to children who process it that way). He was screaming and sobbing and was unable to get free. She then forced his hand to his mouth and shoved it at his mouth to make him taste it. In the observation room I stood watching stunned, horrified, and filled with growing rage. She then wiped his hand off, and I thought she was done, but instead of letting go of his hand she proceeded to repeat the entire process, while he still sat sobbing helplessly. At that point I went in there and grabbed him and told her we had to go. I was so upset I couldn’t even confront her, I just wanted to escape. Later I would feel like a coward for this. I cried the whole way home and called my husband. We agreed he would never go back there. We agreed that we should have called it off long before it got to this point. I will always regret that we didn’t quit as soon as it began to feel wrong. Now I know better. Now I will do better. Later our ABA therapist would admit to me that she was glad we quit, that it was making her uncomfortable too. She is not allowed to comment on clients’ choices in private therapy and she felt awkward, being unable to speak her mind on the matter. I think it is interesting that we had an OT doing all the things ABA is denigrated for, things our ABA team have never done, and our ABA therapist herself was upset by it.
It has been a month since we quit feeding therapy at Center A. Wary of trying another center, I avoided looking into Center B. I spent the month seeking a feeding therapist that would be willing to come to the house and work with us privately in our home. I contacted several possible therapists, but none were willing or able to work in our home. Meanwhile R dropped all but one of his foods, potato chips, and went a week eating only chips. I knew we needed to get help, so I reluctantly called Center B. On the phone I was in battle mode. I stated firmly that I was unwilling to set up an evaluation until I had been given an appointment to speak personally by phone or in office with the clinical director. I informed the secretary that we had a very high needs child and I didn’t want to invest time and energy into a placement until I had confirmation from the director that his needs could be accommodated there. I was ready to argue, but the secretary calmly said, “Well we always do a one-hour intake by phone with the clinical director before scheduling the assessment. If you’re willing to let me take down some information then we can go ahead and schedule that.” Taken aback that this was already part of their routine, I agreed. The following week the clinical director called me at our scheduled time. We spent over an hour discussing what went wrong at Center A, what kind of accomodations R needs, the necessity of experienced therapists that can work with a severely impacted child, and the specifics of what I’d like to see for R’s therapy goals. Throughout the discussion the director explained how they would approach situations, and each time it was exactly how I would have requested that they approach it if I had been asked. This was really encouraging, and I was cautiously optimistic. I completed all their paperwork, and his assessment was scheduled for January 19th.
When we arrived at Center B, R was crying hard, which is normal for him when we go somewhere new/unfamiliar. Me and his ABA therapist took turns trying to soothe him as we waited, showing him videos he likes on the iPad, hugging and squeezing him, verbally empathizing. After a few minutes the clinical director and the therapist she hoped to pair with R came out to get us. They first had us bring R to wash his hands at the sink, and then we went into one of their gyms. R was still crying and anxious. We and he noticed immediately however, that they had the exact same spinning chair R uses at home and at the sensory gym to calm himself and play in. This was like divine intervention! He went straight into the spinning chair, still crying, and the Center B therapists followed him over and began to spin him.
They did not speak to him or us, and it was clear by their demeanor that they wanted us to remain silent. Me and the ABA therapist sat back, a few feet away. We all sat in silence as they spun him. They did not try to make eye contact with him, they were very quiet and still. He began to calm himself. His tears dissipated, and a few minutes later he took some deep breaths. He seemed ok, though highly sensitive, teetering on an edge. One of the therapists began quietly blowing bubbles for him. The second therapist would pause in spinning him while the bubbles were blown, then after a moment spin him some more, then pause and more bubbles. At first he ignored them, but as he felt more and more calm he began to watch the bubbles, then finally he reached for one. After a few more minutes of bubbles the therapist put them away and took out a sensory ball (a ball with bumps/blunt spikes all over it). She began massaging his foot with the sensory ball. I don’t know how she knew that he might like this, but this is one of his favorite activities at home. He loves any kind of foot massage and really enjoys the texture of sensory balls. At this point I began crying a little because I was just so happy and amazed. Since his anxiety started this has NEVER happened. We have never been somewhere new that he was able to calm down at on the first visit. I was absolutely floored. I sat there trying desperately not to lose it and all out sob! This was about 15 minutes into the session. The therapists, gauging his growing comfort level, spoke for the first time. They began talking to him softly and gently at first. One of them quietly read to him from a board book while the other spun him and massaged his feet. After a few minutes of this he spontaneously decided to jump out and go for the swing, which he had been eyeing quite a bit since achieving a calm state. He climbed onto the platform swing and laid down on it, waiting to be pushed. The therapist pushed him on the swing quietly first, and then more playfully, counting down to big pushes, and pausing mid push to pull the swing up close and playfully exclaim “I got you!” R cracked a huge smile and was officially 100% “himself”- the happy, joyful, playful R that we see every day at home. The rest of the assessment went great. I left ecstatic. This is where he belongs. These people get it. They were perfect, they were brilliant. Later, discussing it with my husband, we both recalled how whenever R is somewhere where he is experiencing his anxiety, he is trying SO HARD to calm himself and hold onto his control. Once the fear and anxiety reaches a certain point of no return it becomes a meltdown, and is totally out of his control. We see him struggling to keep that control, to calm himself down. And it is such an effort that even a single spoken word- not even spoken to him- even just me saying something to another adult in the room- is enough to cause him to loose it. Have you ever needed absolute focus to do something? It’s like trying to remember a number and then have someone yelling random numbers in your ear. It’s impossible. I think that’s what happens to him when he is trying to calm himself- something as simple as a spoken word or an unpredictable movement in his vicinity (like someone walking into the room) can negate all his efforts. Somehow the therapists at Center B understood this, even though it wasn’t something I had completely understood myself until after watching them with him. Like some kind of mythical autism whisperers, they knew just what to do, even better than I could have. They get it, they respect it, and I think me and my husband can learn as much from them as R can learn through the therapy. I can’t wait to see where this goes.
I read a lot of fantasy. Epic fantasy, urban fantasy, YA fantasy, sci-fi, vampires, werewolves, wizards, fae, gargoyles, demons, angels you name it. I still re-read Harry Potter in its entirety almost every year. I spent a decade of my life immersed in Robert Jordan’s Wheel of Time series, starting as a teen, and ending as a mom of 3. I was reading George RR Martin’s Game of Thrones series before it was a thing. Years before. I actually recommended it to a nerdy type friend who I thought would enjoy it in 2005. He forgot my rec, and then 4 or 5 years later when the hype started he tried recommending it to me! Pffft dude. YOU may have discovered this series now that it’s a thing, but I was reading this back when it was fringe enough that when I had a question for the author I emailed him and he emailed me back the same night. You know. Cuz he wasn’t a legend yet and wasn’t receiving thousands of reader comments/questions per day. So yeah, I pride myself on being a serious fantasy reader.
One of my favorite fantasy templates is the Special Snowflake. This is a story about a very special individual, usually unique even among other supernaturals, and often raised apart from the supernatural community, mistakenly believing themself to be a regular human. As this person’s abilities emerge, they must learn to control them and discover their destiny.
What does this have to do with autism? Spidey senses. Whenever I get into a good vampire book I think to myself that in real life vampires would be autistic. Or, SPD at the very least. You know what happens when you have supernaturally heightened senses? The world drives you nuts. Everything is too loud, forcing you to hum or rock back and forth to drown out the noise. You get lost in visual details and lose the bigger picture. The perfume your teacher thinks is barely perceptible makes you gag every time she leans over your chair, not because the scent is unpleasant but because you can smell it too much. Your clothes feel like sandpaper rubbing you raw. It’s all too much. You need strategies to reduce the stimulation so you can cope and function. Some fantasy books are clever enough to realize this and it is part of the story. The protagonist is overwhelmed and can’t control their heightened senses and supernatural abilities. At this point in the story a mentor often emerges. This is another supernatural individual who guides our protagonist through these terrifying changes. They can do this because they know what it feels like.
I’ve been thinking how great it’d be if our autistic kids got to have someone like that in their lives. I chose Yoda for the picture and title because, let’s face it, you probably wouldn’t have known who I was talking about if I used a reference from one of my favorite books. 🙂 But everyone knows Yoda. When Luke Skywalker needed a mentor to train him in the force he found Master Yoda. Our kids need their Yoda. Wouldn’t it be amazing if, when kids were diagnosed, along with all the therapists and specialists they are referred to they were also assigned an autistic adult mentor? Someone with a similar sensory profile. Because my examples were all about hypersensitivities, but there are lots of kids, like my son, who also have some serious hyposensitivities. Kids that are always looking for more input because they can’t feel enough. I would love to have someone in my son’s life who knew first hand what it felt like to be him. Someone who could give us and him ideas for coping strategies, and safe ways to meet his sensory needs. Someone who could help him discover his strengths and the best ways to play to them. How awesome would that be?
*image is a screenshot from the movie The Empire Strikes Back. This image belongs to Lucasfilm Ltd. and its usage here qualifies as fair use under U.S. copyright law