Trial and Error

We are now about three and a half years since Moe's autism diagnosis. One thing I've learned, and that I'd share with any parents of a newly diagnosed child, is that there is a lot of trial and error. Although there are professionals who can guide you, there is no way to know exactly what therapies or interventions (or lack thereof) are going to help your child progress. It is one of the aspects of parenting Moe that I find most frustrating. I just want someone to tell me "do this!" and Moe will reach his potential.

We initially had Moe in a center-based program, then realized he needed something different and moved to an in-home program. I regretted those few months we "wasted" at the school. When Moe turned three, we moved him to the preschool special day class. After two years, we decided not to send him back. I regretted not doing it sooner.

But there really isn't anyway to know before you try. Some things work for some kids and not others. Some therapies, like ABA, vary widely in approach, with some kids responding best to concrete discreet trial applications and others doing better with more naturalistic styles. It may take a while to find a therapist or provider who fits your family's style and needs.

Sometimes programs, or therapies or medications may work for a while then need to be adjusted. All people grow and change and our kids are no different. What worked at one time may no longer be appropriate. It takes time to get to know your child, and he will continue to change. I have to remind myself that trial and error time is not time wasted; it is the necessary process to figuring out what works.

We've tried a lot of therapies with Moe. Especially when he was younger, he really loved singing, so we tried music therapy. It was okay, but for us, it wasn't The Thing. We will keep trying. There are more things: aquatic therapy, equine therapy, recreation therapy, listening therapy. We will try some of them (especially ones that sound fun for Moe) and pass on others. I may regret time wasted and money spent on some, and wonder about others we decide not to do. But each thing we try is a lesson learned.

Moe did so well in an intensive, one on one, in-home program this summer. This ABA team uses very discreet learning, with the use of traditional reinforcers like food or iPad time. Moe seems to work well with this  concrete style of teaching and I thought, "why didn't we do this sooner?" I had to remind myself that when Moe was two he had an in-home program and he needed more naturalistic reinforcers at that time. Moe changed, and we adapted his program. It will likely happy again and again.

At the beginning of this school year, we put Moe in a school that uses more of a group-based approach and it didn't work. We understand this now, and as we look for a new school placement I have a better idea of where he is likely to succeed. Do I regret the month he spent at the school? A little. But we had to go through the experience to figure it out.

Fortunately, we are getting to know Moe's style of learning better and getting faster at recognizing when he isn't succeeding. And he is getting better at telling us when he's unhappy - even if it is through behavior rather than words.

As we prepare to start working with an AAC specialist, I am hopeful that we will find the right communication system or device that will help him communicate. Part of me is already kicking myself for not starting sooner, but we had to wait until he was ready. Moe seems to be ready now, and I am looking forward to seeing what he can do. I have high hopes that we will find the right thing quickly, but I am sure there will plenty of trial and error here as well.

Finding Balance

I keep a list of blog ideas for those days when I need some extra inspiration. I've had one for a while that says "making autism a factor in my life but not the focus." This is not something I know how to yet; it is a goal.

When Moe first started his in-home ABA program, I joined an online group for parents of kids with autism. I asked for tips on surviving a full time, at-home therapy program. In addition to "find a hobby," one piece of advice that stuck with me was to not burn out the first year.

But you see, I'm not good at pacing myself. When I have a new problem to solve, whether it is something minor, like buying a new comforter for Jelly's bed, or something major, like an autism diagnosis, I tend to obsess. I reasearch. I read. Instead of sleeping, I think and think and think. It is my way of getting control over the situation, and I like to be in control. I suppose that's why I was a good program manager, back when I had a career.

Because of all that reading and research, I always question whether I'm doing enough for Moe. I read about parents running full time Son-Rise programs and wonder if I should be doing that. On top of his 30 hour a week special day class, Moe gets extra OT and music therapy, but some kids in Moe's class get extra 1:1 ABA, some do more speech therapy. Should I be doing that too?

The other day with my parents at dinner, I expressed this concern (it wasn't the first time), and Jeff got a little upset with me. He pointed out (again, not for the first time) that Moe basically has a full time job and he's not even four years old. My dad pointed out that the more I spend with Moe, the less time I have for Jelly. I have to try to balance the needs of a typical toddler and an autistic preschooler, as well as our needs as a family, and my needs as an individual.

But right now, autism wins. These are crucial early development years, and perhaps it is unrealistic to think that Moe's needs could be anything but the defining factor in our lives. I think I'm going to make turning autism into a "factor, not the focus" a long term goal. For now, I'm going to do my best to give myself an occasional break (provided by my book club and sporadic trips to the gym) and try to really believe that we are doing all we can for both our kids.

Today's post inspired by the Mama Kat's writing prompt, "Finding the balance. How do you manage?"

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!