Autism: The Musical

A friend recently recommended this documentary about a woman who mounted a full-scale musical production with an entirely autistic cast of kids, through an organization she founded called the Miracle Project. Wow. I ordered it right away, and Brian and I just watched it tonight. Wow. Again. Wow.

We needed this film right now, because the truth is, we are struggling. Jack is getting the best possible environment and help, but Mom and Dad need help, too. We have an amazing support network of friends and family and teachers, but we have reached our limit with each other, and it’s showing. We both have had this sort of victim mentality, like we have had this tough situation forced upon us. We love Jack dearly, but we didn’t ask for the difficulties his condition would bring, and we’re sniping and snapping at each other, which really helps no one. It reminds me of that tourist pirate t-shirt that says, “Floggings will continue until morale improves.” Nobody likes floggings. At least no one in my house.

I’ve been in three kinds of therapy for years, but Brian’s been in and out. He has recently started seeing a therapist locally, though, which I think will be a big help. We both just need people to talk to who aren’t living with us, married to us, or involved in the decisions we have to make. The priest who married us nine years ago said that he thinks everyone should be in therapy as preventive health care, not just in times of crisis. (Have I said this before?) At any rate, the longer I live, the more I agree with his statement.

We had a big talk the other day about this idea that we’re stuck, trapped in an endlessly difficult, relentless grind, and that it’s killing us. It was sort of a revelation to say to ourselves, “You know, we could leave. Nobody’s stopping us.” It happens all the time. Couples split up. Children are put up for adoption. But we haven’t been acting like we have those options and have chosen not to take them, which is in fact the case. We have chosen to stay. We have chosen to love and raise Jack the best we can. We have chosen to do this as a team. So let’s start acting like one.

The documentary followed five kids who were part of the Miracle Project, as well as their families and the struggles they have faced. One couple split up during the filming. Another had divorced years ago, and the single mom was raising her son alone, until she found a new love. In a third couple, the husband started a 16-month affair right after his son’s diagnosis. This shit is hard, people. We’re not the only ones struggling. I am sure that every parent, every couple, has had moments of crisis and difficulty, but it seems to me that when there’s a diagnosis or disability involved, those crises and difficulties come more frequently. Maybe that’s not fair, but it sure seems that way to me. I’ve been reading a blog called Mostly True Stuff written by a mom of four kids, two of whom have special needs. How she has the time, energy, and coherence to keep a blog is beyond me, but I’m so glad she does, because she’s a source of great inspiration, humor, and reassurance. We’re not the only ones.

It helped us so much to see other families struggle with autism and raising kids, if only to feel less alone in it all. One of the parents featured in the film is Stephen Stills, of Crosby, Stills, and Nash. His son has Asperger’s. And Stills admits that something genetically similar causes him to “hold a guitar between me and the rest of the world.” Watching these families, Brian and I realized that as hard as it’s been, we’re doing okay. We don’t need to measure our family or our marriage against some impossible ideal. The reality is a lot messier, and if that means there’s no magical answer, at least we’re in good company.

The last ten or so minutes of the film shows the opening night of the musical: the boy who plays “Twinkle, Twinkle, Little Star” on his cello; the girl who sings beautifully, even though in daily life, she can barely talk; the dinosaur expert who has aced all his lines and steals the show; the boy afraid of bullies who sings a number called “I’m So Sensitive.” The closing credits roll to Stevie Wonder’s “I’ll Be Loving You Always.” We had to pause it several times to cry, to laugh, to grab each other’s hands. Just to see what’s possible. It won’t be easy. But I think we’ve stopped expecting easy, at this point. We’ll settle for really, really good. Which we already have.

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4 responses

  1. I encourage you and Brian to get in a parent support group. Also I want you to know that I will be lifting you, your family and your marriage up in my prayers. I am care giving for my mother in law and have finally realized after 5 years that I need a support group… goodness it makes a world of difference. (Obviously I am a slow learner!) Keep your faith and allow yourself to grow with Jack…. children and parents both grow together– it is a form of dance and learning the steps is so challenging. Sending you strong prayers and much love.

  2. love you so much, thanks for sharing your thought, feelings, fears, etc with us!

    I was so suprised at how high the divorce rate is for young couples faced with a breast cancer diagnosis. Just when she needs someone the most, she loses the person who should be her rock. When I went to my last appt with my surgeon Eric was working. She assumed that 2 breast cancer diagnoses in less than 2 years had split us up because she sees it so often.

    ~Jenn

  3. Pingback: Hotdiggitydamn. We won something. | 450 Good Choices

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