Sometimes my son’s disability and mine meet in a strange and gravely beautiful way. I hear him vocalize and I think my sweet boy is gaining his voice while I am losing mine. There is something poetic about it. I know rationally that the two events have nothing to do with one another. But I would gladly give him my voice, go silent forever so that he could speak. Sometimes it feels like that’s what’s happening. A precious exchange. Perhaps that is just a notion my psyche has conjured to protect itself from the horrors that await me with this disease. If I can fantasize some purpose to my loss, some meaning to it, it won’t frighten me so terribly.
I cannot pick my boy up anymore. It’s been months now that I cannot lift him. R does not use any functional speech but communicates in a secret body language with us. He grabs our arms and places them around his hips, pulls and lifts on his toes in a silent but clear request to be picked up. When he asks me to hold him I call my husband, and my husband lifts his weight while I hold him in my arms in a pantomime of how I would hold him before I got sick. I have often wondered if he realizes I can’t lift him, or if he thinks we are just behaving strangely.
A few days ago I sat on the grass watching him play with his dad. He suddenly ran to me, pulled me to my feet, and positioned me as if to say “don’t move.” He then ran to his dad, hand led him to me, and then requested I lift him while placing his dad’s hand on himself from behind. It was clear he did indeed understand that we needed dad’s help for me to hold him. He effortlessly puppeteered us into position for me to pick him up with my husband lifting his weight. We did, and he lay his head on my shoulder and melted into me. The intensity of my emotions hit me like a ton of bricks. I had forgotten how it felt to truly feel the weight of his form against me, his body soft and warm, the smell of his hair and skin. We’ve done this before but never so absolutely. This time he gave himself completely to our strange hug and it felt like before, like when I could truly stand and hold him in my arms. He lifted his head from my shoulder and stared deeply into my eyes while clutching my shirt in his little fist. This kind of eye contact is so rare and when I get it from him it feels like the most precious priceless gift. Like the clouds have parted and we are bathed in warm angelic light for a few unearthly moments.
Sometimes I worry that R might lose interest in me as my disease progresses. That if I can’t speak to him at all, if I can’t use my hands and arms to soothe and tickle and hug and hold him, that he will find he no longer needs me. But moments like R’s request to be held soothe my fears. I will always be his mother, and our bond can survive this, it can.
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.
Recently we have been having some pretty exciting success with PECS! PECS stands for Picture Exchange Communication System, and it is a picture-based alternative form of communication.
Therapists have been trying to introduce PECS to R ever since he was first diagnosed at 18 months. They start very simple- introducing just one picture card of a highly preferred item. Back when they first started trying PECS with R, the card was a screenshot of his favorite Baby Einstein video. Therapist A would play the video for a few minutes then pause it. When R fussed for more, therapist B, standing quietly behind him, would take his hand and hand-over-hand have him pull the video card off a velcro strip and hand it to therapist A. Therapist A would announce “video!” and press play. The idea was that he would eventually make the connection that his video was played every time he grabbed the video card, and then he would begin grabbing it spontaneously without help or prompting from therapist B.
When we initially tried PECS, this never happened. A few months later when we tried again and he did progress to grabbing the card himself, but was unable to discriminate between cards, despite the exact-photo images on them. Meaning that as long as there was only one card on the strip he could and would pull it off. But as soon as you added a second card option, for example “apple,” he would grab one or both cards indiscriminately. The idea was to teach him to choose the right one- so if he grabs “apple,” he is given an apple, and if he grabs “video,” his video is played for him. However, despite exhaustive attempts we were not able to get him to discriminate between cards, and he soon began refusing to do anything more than grab and mouth the cards. So we put them away again. PECS were tried once or twice more and with the same result. About 6 months ago I asked his therapists to put them away semi-permanently and focus on ASL signs. While we did see some receptive language success with ASL, R was not able to form signs expressively.
A few weeks ago I noticed that R had learned what “no” means and was showing consistent understanding of the word. That same week he made faces to himself in the mirror for the first time- a cognitive milestone that typically developing children achieve around 6 months of age, but which R had been missing. Previously he did not appear to realize that the face in the mirror was his own. We had seen one or two other cognitive developments recently, and it occurred to me that with these developments maybe it would be a good time to try PECS again.
We started with food items, since that is such a concrete thing, easy to make exact photo images of, and something which he interacts with multiple times per day. Every time I brought him something to eat I showed him the card picture of the item. He only eats the same 3-5 food items, so I kept those 4 or 5 picture cards hanging on a velcro strip next to the kitchen when the cards were not being used. I noticed him looking at them on the wall throughout the week, and looking at them when I presented them with his food. After one week of this, R independently went to the strip on the wall and pulled off the “cookie” card to request a cookie spontaneously for the first time! Over the course of the next week he also spontaneously requested “chicken” and “chips” several times. He was really doing it! Watch R request a cookie here.
In our initial excitement over the communication we did allow R to choose “cookie” about 15x per day. But after a few days it became evident we were going to have to deny him or “cookie” was all he was going to ask for and eat. At first I tried removing the “cookie” card from his strip at times when it was not going to be an option. This didn’t quite sit right with me- you wouldn’t remove words from a child’s spoken vocabulary just because the answer is going to be “no”- but I didn’t know what else to do. This did not help or work however, as R simply searched for the card and then had a tantrum that he couldn’t find it. It broke my heart because he was working so hard to communicate with us and didn’t understand why he was being ignored/denied.
At a loss of what to do, I reached out to an AAC (alternative augmentative communication) group on Facebook that is home to a number of helpful SLPs. They all had the same advice- create a “no” symbol that can be imposed over the card so that R can still see the cookie card, but sees the “no” symbol on top, denoting that it is not a choice right now. I made a clear pocket with the “no” symbol on it, and placed the cookie card in the pocket.
To further help him understand, I also paired it with the “no” and “all done” cards that his school uses in the classroom, and with which his teacher said he is slowly growing familiar. At first he was resistant. He tried to grab the card despite the “no” sign, but I would run his finger over the “no” sign and show him the “no,” “all done” cards and use the ASL sign for “all done” (which he understands) as well.
His next move was to remove the cookie card from the “no” pocket. My husband greatly appreciated this! If the pocket made the cookies off limits, surely just removing it from there would make them available again! We responded by intervening and putting the card back in the “no” pocket and reminding him again that it was “no” and “all done.” At this point I decided to move “cookie” off the wall strip, and onto a separate sentence strip paired with “no” and “all done.”
Then when it was time that he was allowed to choose “cookie,” I brought him over and had him watch as I removed “no” and “all done” and took “cookie” out of the “no” pocket. I placed the “yes” card down next to the “cookie” card and kept them on the same separate sentence strip.
This arrangement seemed to make more sense to him. He began checking the strip to see if it said “yes” or “no/all done,” and his attempts to remove the cookie from the “no” pocket reduced dramatically.
As of this morning we are introducing cards for a few non-food items. For example the strip below is mounted on his spinning chair so he can request to be spun by me or his dad.
I’m really proud of him and excited that we are slowly getting some communication! Hopefully we will have more PECS progress to share in a few weeks or months as we continue to work on this.