The Soundtrack of Your Life

What is the soundtrack of your life?

Is it a thumping bass, moving you forward with rhythmic precision? Do you dance through life with the rise and fall of a waltz? Or are your days filled with the hectic unpredictability of a jazz improvisation?

Like many of us, I formed my musical taste during adolescence. I preferred dark, sensual singers and bands like Morrissey, Depeche Mode and The Cure. Although I could dress the part for the occasional concert, my personality was never quite so dark, so my collection of records, tapes, and eventually CDs, also included plenty of livelier bands like Duran Duran and Erasure.

My iPod is now filled with those same sounds, as well as some newer additions I've discovered along the way. My kids have their influence there as well, with Music Together as likely as Ben Folds to come on when I'm shuffling songs in the car. I used to obsess on whatever album I was into at the time, especially if it was new, playing it over and over. Lately I always shuffle songs, but with one hand on the next track button in case the selected tune doesn't fit my mood (or meets with disapproval from a small person in the back seat).

I've read that smells have a powerful way of transporting people back to a certain place and time. But isn't it the same way with songs? A certain song comes on, and I'm instantly lying on the floor in my pink room, making mix tapes from the radio, playing and replaying my favorite songs so I can learn every word.

This post was inspired by Deborah Reed's debut novel, Carry Yourself Back to Me. The story follows 
heartbroken singer-songwriter Annie Walsh as she digs into the past after her brother is accused of murder. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members posts inspired by Carry Yourself Back to Me on book club day, October 3, at From Left To Write.

Music Therapy Progress

Swaying to the music

I've mentioned before how Moe seems to be quite musically inclined. He sings a lot, and is always in tune. A few months ago, we started going to music therapy. Jeff and I, as well as Moe's teacher, were all really excited about it. I was hoping this could be the key to unlocking some of Moe's communication and play skills, and also a way to develop his musical aptitude into, perhaps, a real talent.


But as I've had to learn over and over, there is no magic bullet and all things take time. The first couple months of music were rough. Moe seemed to enjoy going but would jump from over excited to trying to leave the room to major meltdown. It was exhausting for me, and I began to wonder if it was worth it. I'm happy to report that things are going much better lately.



Look at that imitation!



Our music therapy sessions are 45 minutes long. They are similar to an ABA session, although all the activities involve music. We might do imitation games with the drum or the xylophone (Moe's favorite); have Moe make choices between different activiites, like playing with scarves or shakers; or ask Moe to make selections during songs, like finding the correct animal during Old Macdonald. There is als some time for just playing and exploring the instruments, and Moe likes to strum the guitar and play the piano.

The last two sessions have gone really well. In general, Moe has been more regulated,so keeping him calm in class has been a little easier. He's still excited, and some things that are generally difficult for him, like making choices, are still challenging. But we've seen a lot of improvement in terms of engagement, eye contact, and imitation. We've seen these improvements outside of music therapy as well.




Great eye contact

It is impossible to determine whether school, music, OT, or just developent is the cause of these improvements. With autism, you end up doing a lot of trial and error until you find a combination that works. You hold that pattern until it isn't working anymore. Some things, like Moe's general calmness and better regulation, can come and go. But for now, I'm pretty happy with the way things are going.

Most of all, Moe seems to be having a lot of fun!

 





Feeling Groovy

All four of us have been down with terrible colds. It's been, literally, weeks since we've all been feeling better. Yesterday was the first time I even remotely felt like drinking coffee, so you know it was serious. Once I feel like having a glass of wine again, then I'll know I'm truly well again.
When you've been sick for a while, all stuffed up with no energy at all, there's that one day that you wake up one day and feel almost yourself again. And on that day, you are so thankful for being able to breathe again, and you have even a little bit of energy, that you feel absolutely amazing. You are thankful to be alive! The world is beautiful and the sun is shining! What were you complaining about all that time?

Well, I think Moe had that day yesterday. He was in such a good mood, and his only grumpiness at all was when I put him in the bath with his sister and he did not want her there, and who can blame a boy for wanting his bath to himself? But otherwise, he was engaged and actually even initiated some requests from me ("mands" for those of you hip with the ABA lingo). He tried to talk a little and signed even more, but mostly he was just happy to be - singing, hanging out with us and not hiding in his dark room. And I, also finally starting to feel better, was overjoyed. I remembered that my boy is sometimes the happiest, lovliest, sweetest boy and that even though he doesn't talk, simple exudes his adorableness (adorability?) just by being himself.

As you know, Moe loves music and especially loves to sing. He's been enjoying watching The Sing Off, and although I have to skip the talking parts, which means I miss my hearing my nerd-crush Ben Folds, Moe seems to really love the singing. Last night, before getting ready for bed, Jeff found some YouTube videos of Bobby McFerrin. Moe loved it! He took it all in, giggling at the upbeat, funnier songs, quieting for the more serious ones.

It was perfect.

Too Much Information

And I'm not talking about the good kind of TMI where you get to hear some juicy secret of mine. You see, I've been home a lot lately. I mean a lot. We've all been sick and that means I've had a lot of time to surf the internet. I've also been writing a little for Technorati, so I've been researching autism and paying attention to autism news a lot more, and there's just so much of it.

Just this week, I've learned that autism may be caused by: mitochondrial dysfunction, living too close to freeways, and living near a cement plant. In the past, I've also read that autism is caused by: heredity, other genetic mutations, vaccines, bad parenting, heavy metals in the bloodstream, premature birth, and allergies. The list goes on. (Read this great summary of the flaws in some of the recent research.)

Within autism, there are so many diagnoses and co-morbid conditions: high functioning to severe, Asperger's, apraxia, sensory processing disorder, hypotonia, hyperlexia, and echolalia to name a few.

And then there are the plethora of therapies out there, including but not limited to: ABA, Floortime, SonRise, Pivotal Response Training, Relationship Development Intervention, occupational therapy, speech and language therapy, sensory integration therapy, music therapy, recreation therapy, riding horses, surfing, gluten free casein free diets, chelation, B12 shots, other vitamin and mineral supplements, essential fatty acids, fish oil supplements, gut treatments including probiotics and antifungals, and hyperbaric oxygen therapy.

It is enough to make a person crazy.

Our approach has always been:

• Let the science guide us.
• Go to trusted professionals for guidance.
• Do no harm.
• Do what works for our family.

And because of that, we've gone what might be considered a fairly conservative route for Moe's autism therapies. We started with individual ABA, speech therapy and occupational therapy, and gradually added a group component. Now Moe is in our school's program (which is excellent), a small class based on the Competent Learner Model, but taking cues from traditional ABA and developmentally-based techniques. He gets group OT and both group and individual speech at school.

We recently added some music therapy, which is also a lot like ABA but using music (instruments, musically based games, singing, etc.). This is not "traditional" but because Moe is so musically inclined, we thought at the very least it could be fun for him. Our music therapist also teaches older spectrum kids to play instruments so my hope is we are building a basis for that in the future as well.

We've recently decided to add in some more OT. It's not going to be strictly sensory integration therapy but we will focus a lot on Moe's sensory-seeking needs. He has a lot of them (chewing, spinning, swinging, etc.). We've had to delay starting because of all our illnesses but I hope we can give Moe some of that extra input he needs to help keep himself more regulated and focused throughout the day.

I am not advocating this approach for everyone, but it is what we can handle. I do think it makes a lot of sense to start small and add in as you go, both in terms of keeping some sanity and for tracking progress. But every day I question whether we're doing the right things, too much or too little. Jeff seems more confident in our approach, and that's good, because I'm sure I'd be all over the map if these decisions were mine alone.

Autism may be a puzzle, but its really the maze of options for parents that is so confounding.

'Tis The Season

Today's post is over at Silicon Valley Mamas. Click to read 'Tis The Season, and learn what I'm really grateful for this season.

Up and Down, Salty and Sweet

There are times for thinking, contemplating, and planning. There are times for reflection and healing. And then there are times for action, when we have to pull up our big girl panties and get to work. This has been one of those times.

Moe has been having some trouble with regulation. This means that he'll go from being really mellow one minute to running, climbing, and screeching the next. This may sound like your average 3 year old, but it is more extreme than that, and, when he gets really keyed up, he can't easily calm down and needs external help. The great thing is that Moe is often able to recognize when he needs to calm down and will independently go to his room, close his door and climb into his crib, his comfort place. Or he might rock on his tummy on the rocking chair or exercise ball. But during the times when he's really up, he can be quite a handful, climbing walls, splashing in whatever water he can find (including the dog dish and the water that comes out of the refrigerator). It may look like he's having fun, but being so over-stimulated can be quite uncomfortable for Moe, and hard for me to deal with.

We've been working with an occupational therapist who is helping us create a good sesory diet for Moe, especially on the weekends when he lacks the structure of the school day. A sensory diet just means that Moe gets a good range of sensory input throughout the day, to make sure all his system's needs are met. It also means we have to find the right type of activities for different parts of the day. The first step is to figure out the right "up-regulating" and "down-regulating" activies for Moe. For example, a warm bath is usually a nice, calming activity for kids. Not here. Water is very stimulating for Moe. He seeks out this type of input, but we don't want such an exciting activity before bed. So I've started giving Moe his bath when he gets home from school. This is the crux of our new plan: make sure we do stimulating activities in early the afternoon, and calming activities after dinner. Sounds obvious, no? But it is actually quite challenging to make sure Moe is getting what he needs, especially since we aren't always sure what that is. And there is a 17 month old hanging around with her own agenda.

Some of the aspects of Moe's sensory diet include:

• water and other sensory play, like shaving cream or sand
• variety of snack textures, including chewy and crunchy, and strong flavors like salt or lemon
• heavy work, including jumping, pushing heavy things, climbing
• swinging, rocking, bouncing
• brushing techniques, deep pressure, joint compresions, "active" sitting (sitting on an uneven surface, like a ball or wedge)

We know that some of Moe's sleep issues stem from this same inability to easily self-soothe. He wakes up in the middle of the night, is tired and wants to sleep, but is unable to calm himself enough to do so. This can be really frustrating for Moe, and lead to some pretty rough nights. I hope that being more regulated during the day will help at night. Our other goal is to help Moe learn some self-soothing techniques so that when he does wake up during the night he can get himself settled down and return to sleep. This may mean opening up the crib tent so he has access to things in his room, but we're not there yet.


Another way to think about this is that Moe may have trouble calming his mind at night. He has a lot of input to during the day that he needs to process. Older children with autism have said that they feel like their minds are very busy, and they can't shut them off. I know I've felt that way if I've had caffeine too late in the day or am worried about something. One suggestion I really like is to try using music as a calmer. We've started doing music time before bed, and are looking for a kid's mp3 player that Moe can control himself. The idea is to load some calming music on the player and if Moe needs to settle down in the night, he can turn it on. We're also experimenting with some guided meditation for children. These are calming audio stories that help kids relax. These can be really useful for older kids who have trouble shutting down at night. I don't expect Moe to understand the stories now, but I do think the relaxing cadence could be calming for him.

As you can tell, it is a time of putting in the work and trying lots of things. I wish someone could just give me a plan and say "do this." But it doesn't work that way, so we're experimenting. Some days will be better than others, but hopefully we'll hit on the right combination of up and down, high and low, salty and sweet.