LIFE IS A SPECTRUM

Music truly is a universal language. Even pre-verbal and non-verbal people can be moved to communicate through melody, harmony and rhythm. There's something inside us that literally craves the sound of music.

Therapy based on music is growing in popularity in the autism community. Billy attends Kindermusik with the whole family, as well as a couple of normally developing friends. And we also take him to weekly music therapy sessions at TMH Rehab.

Music therapy can be done in a group setting or one-on-one. Billy's session is one-on-one with the therapist, though I usually attend with him -- and most of the time Willow is there as well, sitting in her stroller, sipping a bottle and occasionally demanding a "cook-cook" (cookie).

At TMH, music therapy is free to their existing clients (we also attend occupational and speech therapy there), because it is a teaching hospital and intern therapists regularly participate in -- and often lead -- the sessions.

We always start with a "hello" song. We take turns singing hello to each of us -- Billy, the teacher, Mama, Willow (who has started waving as soon as she hears that song) -- while the therapist plays the guitar. Sometimes, Billy strums the guitar while the therapist holds it and changes the chords.

Then he gets to choose between a couple of activities. In the beginning, we used a picture schedule, and his two choices would be represented by pictures. For instance, he might have a choice between a drum or puppets. If he chooses puppets, he picks that card and places it on the position for "activity we're doing now." After we're done, he takes the card and puts it in the "All done" pile. That way, he can visually understand that an activity has a beginning and end and that we complete one activity before starting the next.

If he chooses the drum, one of the activities we do is "Leader of the Band." We each hold a drum, and we all sing: "Billy is the leader of the band. Billy tells us when to start and stop." Then Billy has to shout, "Start!" before we can all start playing our drums. And we keep playing until he commands us to "Stop!" That activity helps reinforce the idea that communication helps him to get people to do what he wants. He got the hang of that one pretty quickly. I frequently hear "Stop!" at home. But he also started commanding me to "Tickle!" which was nice.

There are several different puppet-based activities. One of Billy's favorites he calls "Alligator Monkey." It sounds like an inexplicable Japanese cartoon, but it's actually a game in which the therapist holds an alligator puppet, while Billy and I hold five monkey "puppets" (which are really just felt monkey on a popsicle stick).

Then we sing:
"Five little monkeys swinging from a tree,
teasing Mr. Alligator:
'Can't catch me, no, you can't catch me.'
Along comes Mr. Alligator quiet as can be
and he SNAPS that monkey right out of the tree!"

At the SNAP point, the therapist grabs one of the monkeys in the alligator's mouth. At first, I was worried Billy would be frightened by the game. But recently, he's started feeding the monkeys to the alligator as soon as the song starts. He sometimes tries to give the alligator a couple of monkeys at once.

Another favorite game: Bean bags. We each receive a bean bag of a particular color and sing:
"Bean bag, bean bag, where ya been?
Way up high (we hold our bean bag up high)
and down again (we move the bean bag down low).
Bean bag, bean bag, don't get lost.
If you're bean bag is (insert color here), then give it a toss!"
And whomever has the bean bag of a particular color, throws it into an upturned drum.

Music therapy uses instruments like the xylophone and various drums and shakers. We also occasionally use streamers, balls and balloons, bubbles, books. The unifying element is that there is a song involved with every activity, and each game or song helps teach a concept. There's a song for taking turns, a song for greetings and goodbyes, a song for cleaning up, a song for following instructions, even a song for sitting down in your blue chair and not running around the room.

When we started music therapy six months ago, each transition to a new activity was a struggle. Even getting from the lobby to the therapy room inspired a meltdown for the first few weeks. He didn't want to give up one activity or instrument he liked in favor of a new one. But now he'll run right in there shouting the name of whatever instrument he wants to play. He understands that he has to sit down in order to play. And he understands the concept of taking turns. He still prefers "Billy's turn" but he grudgingly accepts that other people get a turn with the Lollipop Drum too.

I'm a huge believer in music therapy for my child. I've seen it work with my own eyes, because Billy loves music. I can ask Billy to do something, and he'll ignore me. But if I sing the command to him, he'll look up, and most likely, respond. Sometimes, as I'm making up a melody and belting out, "Please, please, BIL-ly, stop stick-ing your hands in the toil-LET!" I feel like I'm starring in my own very strange way-way-off-off-Broadway production, but I don't mind that. I like musicals.

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Music Therapy for Autism

To the tune of every SLP's favorite song, "It's Time to Clean Up":

It's time to wake up, it's time to wake up...

It's time to eat breakfast, it's time to eat breakfast...

It's time to brush teeth, it's time to brush teeth...

This song is making me crazy, this song is making me crazy!

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Parenting isn't easy on control freaks. I thought that, like most projects I tackle in life, careful study of the right books would fully equip me for pregnancy and motherhood. Whatever. Let's just say that What to Expect in the Toddler Years should contain the subtitle "In an Ideal World." (The Girlfriend's Guide books may not have prepared me any better, but they at least made me laugh. Hard.)

I like to carefully plan out and schedule my day, make to-do lists - for myself and Dave (oh yeah, he LOVES that) -- prioritize said list and then mark off each item with color-coded highlighters. I love highlighters.

My children like to put handfuls of mac-n-cheese in their pockets, develop strange rashes and get various parts of their bodies stuck in various places in the house five minutes before we need to pull out of the driveway to be somewhere. And those are the easy upsets to deal with. The most terrifying thing about parenthood, the thing I was totally unprepared for, is how vulnerable it makes you feel. Suddenly, the source of all your greatest joy and pain is walking around the world, running into things and people and you can't stop it or control it. I suppose I could wrap them up like mummies and feed them like baby birds but that's generally frowned upon by the best parenting books.

I realized fairly early on that I could either loosen the reins a bit or become a heavy drinker. Instead, when things veer off the rails, I organize.

My favorite tools: Velcro, Ziploc bags, a black Sharpie pen, strips of sticky magnets and index cards. During the long road to Billy's autism diagnosis, I became obsessed with organizing his toys correctly, as though the perfect playroom could "fix" him. I would stay awake at night debating whether the baby doll and bottle I bought for him (to practice imaginative play) should be in the "housekeeping" area, with the play kitchen, or next to the bikes, since his favorite thing to do with the baby doll was run over it with his Big Wheel.

I took a picture of every toy and labeled its position in the toy room with a Velcro-ed picture, so that he could practice returning things to the right place. I used those same Velcro-ed pictures on his picture schedule, a tool that helped teach him about his day and how to make choices.

My organization stress response isn't limited to toys, though. The week Billy started school I was so worried that I labeled every shelf in the kitchen cabinets with index cards; then I get blind with momentary rage if I open a cabinet and Dave has put a plate on the clearly marked "over-sized bowls" shelf. On the rare occasions that Dave and I argue, I reorganize his stuff. I might as well; if he's looking for something, he always asks me where it is, so it might as well be somewhere I put it.

He has said that he's afraid one day he's going to wake up and find himself sealed in a Ziploc bag labeled "Daddy" and Velcro-ed to the wall. And I told him that if I were stressed enough to do that, the bag might not be labeled "Daddy."

I'm probably the worst possible parent to deal with my son's autism; at least that's how it feels most days. It seems that no answers are clear-cut, no treatment is without debate, and the experts can't even decide how best to organize the diagnoses and treatments. (For more on the current debate about the American Psychiatric Association's recommendations, click here.)

Most medical doctors will recommend drugs and pooh-pooh the idea of more holistic approaches, such as the dietary interventions. Most parents, therapists and doctors who are very committed to biomedical (diet, supplements, etc.) interventions refuse to believe that every child can't be helped by those treatments. For every non-invasive therapy we try -- therapeutic listening, brushing, supplements, weighted vests, you name it -- there's a website or anonymous blogger somewhere saying how stupid it is.

I have poured over long lists of symptoms of everything from yeast sensitivity to sensory processing disorder. Some symptoms Billy seems to have, some he doesn't. Some seem to match the symptoms of five or six other allergies or disorders. Many of them instruct me to "watch his behavior" after eating certain things. Well, the same behavior that you attribute to wheat allergy could also be explained away by the fact he didn't nap today, his sister got chewed carrots on his Lightning McQueen car, and I won't let him watch TV. In short, controlling his environment and attributing behavior to one particular thing is next to impossible. He's a three-year-old, not a lab rat.

I thought when we started this process that if I found the right expert, I would get a clear-cut prescription and that would be that. Unfortunately, I found too many experts in everything except my child. It turns out that Dave and I (and my parents) are the only ones truly expert in Billy, what works for him and what doesn't. And even that list changes from one week to the next.

It drives me to distraction. But when the stress gets to be too much, I can always go organize Dave's closet.

Reader Comments

LOVE IT!

LOVE this. I have a lot of friends obsessive about organization but I don't know anyone that picture coded the playroom. I know one friend in particular that would be all over that idea. A pediatrician once told me during a visit that everyone has a neurosis of some kind. I was expressing concern over a bout of obsessive hand washing that Molly was going through--5 times during meals. He looked at me and said, "well, everyone is obsessive, compulsive, or neurotic in some way." Yes, I agreed, but isn't this unusual behavior? He asked, "What do you and your husband do?" I told him we were both lawyers. All he said was, "Case closed. She's doomed."

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