Thursday, March 27, 2008

Autism: The Musical - Take 2

If you've ever met me, if you have visited this blog before, you already know that I want you to see Autism: The Musical for so many reasons.

But did you know that, as of this week, it's right here on the HBO web site - and free? It's 93 minutes of your life that are well spent.

Matt and I watched the documentary together tonight and I was so happy to be able to share it with him. We went through a lot of Kleenex. Both of us. A lot.

Some of my favorite writers out there who have children on the autism spectrum have written eloquently about the film here and here and here.

I can't speak about it from the parent's perspective, but I can say a few things about it as a communication specialist.

First of all, I had forgotten entirely that Elaine Hall (the director of The Miracle Project) referred to Dr. Stanley Greenspan and all that she learned from him that led to the amazing Floortime work she did with her son Neal. It makes perfect sense, given the nature of the program she put together for the kids, how she ran it, and what her agenda was (i.e., for the kids to have a great time and feel good about themselves). The way those kids felt when they were at The Miracle Project (throughout the entire 6 month process, not simply the performance) - good about themselves, loved, able to make friends, safe to explore some of the scariest and saddest parts of their lives - is how kids feel when they walk into our clinic here in Chicago and also what I saw unfolding every single day when I worked at Oak Hill School in the Bay Area. For kids like these, there is nothing better than having a place like this available to them and yet it seems to be so rare. I watch how Elaine and her staff interact with the kids and find it completely familiar and at the same time so uplifting to observe as an audience member.

I realized in this second viewing how much the film influenced me the first time. As a therapist, having such clear windows into the children's home lives was a gift. To hear parents talk openly about the strain autism has put on their marriages, to see what some of the interactions are like when there is not a therapist in the mix, and to be reminded of the nonexistent safety net our society holds out around families with these particular challenges - all of this has been priceless for me. I think that reading blogs has made a difference for me as well, but since watching Autism: The Musical the first time, I know I have been asking different questions and focusing a lot more on the emotional health of the entire family. We talk about support systems, who is getting how much respite and when, and how the sibling relationships are going. I do that now before we even deal with the communication needs, because a family in emotional crisis is going to have a hard time taking on the extra work required to learn new communication strategies, and in the end, if we don't have strong mental health, what do we have? I remember now how strongly I felt that message last fall when I saw this film.

The fact that there is always more to learn can be both overwhelming and inspirational. Yesterday I worked a 13.5 hour day. I didn't see my kids all day and got home after 10:30 pm. I'm tired. I feel like I'm fighting the illnesses that have plagued this household for the past few weeks and wonder which day will be the one when my body gives in. Some nights, to be honest, I look at the next day's schedule and think, "That would be a good one for the flu to hit - how am I going to do all that?" This work is hard. There are moments and hours so challenging that no one but my colleagues or a child's parent could understand. If I didn't have my days off at home to recharge with my kids I couldn't sustain it right now. It's incredibly rewarding and satisfying and I'd rather be doing nothing else in the world, but it's hard.

I need to watch this movie periodically. I need to sit back and watch how those children changed; how they lit up when someone understood them and when they expressed something new and wonderful. I need to see the changes in their parents and catch those moments of joy on their faces, and have a good cry with them all from afar. Because I know them all - not as individuals but as composites: a little of him, a little of her, and - voila! - there's someone I know and love. Observing it without being a part of it helps.

So yes, the fact that there is always more to learn, always more to do, can be both overwhelming and inspirational. Tonight it's leaning towards inspirational for me.

11 comments:

CC said...

I don't have cable, so I was able to watch it today as my kids "napped" (I'm on spring break right now). I needed a LOT of kleenex. I blogged (very briefly) about it today as well!

kristen said...

Jordan, you are the therapist we parents dream of, the one who looks at the whole big picture and the whole family, and who asks the immportant questions.

As I said last night (in an email to another blogger), it's not just about the kid who has issues. It's about the whole family. Because if that kid's support system and home life are stressed, the best therapy in the world is not going to make a difference.

Thank god for you and others like you--and yes, thank god for the Miracle Project. If only all our kids had access to something so special.

Lori at Spinning Yellow said...

Jordan - I am so moved by this movie, I really can't stop thinking about it. I feel like Kristen does, that you are the therapist that parents hope for. It is about the whole child and their environment. I wept with the parents and cheered for the kids.

I learned about Floor Time back when I worked at my parent's day care b/c we had to take child development classes. The focus wasn't on Special Needs but just on giving each child individual attention, directed by the child.

I felt very much what you said, overwhelmed and inspired. In fact, I feel that way all the time!

Thank you again for all you do and for blogging so beautifully about it!

Special Needs Mama said...

Jordan,
You are a gift. I remember being at one clinic that focused its philosophy on "family centered" therapy so strongly that the family members ended up doing the therapy. They just didn't _get_ it. What a family in crisis needs is to be asked all these questions, and more. Oh, and if you can put in a gym at your clinic for a mom to work out during the kid's therapy sessions, that's great too! Just kidding...

Jordan said...

Vicki, I have to say, I love the gym idea - as long as I could use it if I get a cancellation! We actually have a vision of a bigger space someday where moms can get a massage during the sessions - one of our assistants is a certified massage therapist! But quite often the moms are involved in our sessions - not *doing* the therapy but being part of it so that they can generalize strategies in other places. But, you know, a day off once in a while to work out or get a massage - now we're talkin'.

kyra said...

i love that movie. saw it AGAIN last night with the hubby this time.

one thing though. it may be unpopular to say, but there were a few moments that bothered me, a few of the LOOK AT ME IN THE FACE moments that always rub me the wrong way. i don't want anyone to do that with fluffy. i don't see it as helpful and i never have.

but that's a small thing considering the beauty of that program and the beauty of that film.

Jordan said...

Kyra: YES!! I said that to my husband last night - it's hard for me to watch. That forced eye contact thing was such a big part of people's professional training in the past, and it's definitely still being done all over the place, even by people like her who get so much else just right. I can't stand it! Thanks for bringing that up.

Jordan said...

Emily posted about this eye gaze question today:

http://daisymayfattypants.blogspot.com/2008/03/
eye-contact-why.html

Emily, as some know me said...

I actually thought of you and Liesl when I saw that happen in the movie and told Marshall that it wasn't something people "did" any more. It's just interesting to me how much focus--ha ha--eye gaze gets in the world of communication, even though we all think so much about speech.

kyra said...

actually, people do it a lot, still. there's a LOT of 'look at me' 'let me see your eyes' going on out there. a lot.

Casdok said...

I cant wait to see it!