No. It's NOT a new irreverent Eric Idle/Mel Brooks production. This is an HBO documentary about Elaine Hall and a group of autistic children with their families who collaboratively write and put on a musical production in 22 weeks. The movie starts out as Elaine shares how her struggle with infertility and unsuccessful pregnancies led her to adopt Neal, a Russian orphan. Through a series of home movies, we are allowed to witness that precious moment when this little boy enters her life, and the phone call to her parents when they get back to the states and Elaine tearfully proclaims, "Dad, we're Home.” A lovely and poignant ending to an episode of Adoption Stories, but only truly the beginning of her story. When she thought the hard part was over, just when the pain of miscarriages and empty strollers was behind her, life throws the curve ball of Autism her way.
I believe a mother's fantasies for her children begin long before they take their first breath. Then, typically, at some point, and for a myriad of reasons, the fantasy breaks, and your left confused and often rooted in denial; “What do you mean you don't want to play baseball?”; “What do you mean this is your boyfriend Spike who has a motorcycle and herpes?”; “What do you mean you aren't going to college?”; “What do you mean you're moving out of state?”; “What do mean you' have cancer?”. All of our little expectations we had for ourselves that didn't work out, we put on our kids, and now THOSE have gone to hell! Isn't That a bite in the ass? (and, YES, this post is littered with a lot more run-on sentences, so, If that irritates ya, EJECT NOW!)
I was a person who often kept my concerns and fears to myself. In my twisted way I thought I was protecting the people I loved, while at the same time acting out and really hurting them. I didn't let on to people around me when I became concerned with my own child’s development. I secretly hoped I was being neurotic (not a stretch for me) and quietly got the courage to pursue professional help. My son would often not respond to his name, so my first stop was an audiologist. I was assured by the audiologist that he could hear and was probably fine and he was still young (he had just turned two)but a speech pathologist would give me some ideas about language development. Well, she did give me ideas about language development. She also told me language development was only one concern. It was then my fantasy broke. It was then that I heard the word Autism in reference to my child for the first time.
After that appointment, I put my son is his car seat, busted out my Nokia phone, and called my poor, unsuspecting husband. I was somewhat detached and told him quite matter-of-factly, that our child had something wrong with him and it could be autism. How's that for blindsiding someone? We decided to go forward with our referral to Inland Regional Center and meet with a psychologist so they could tell us our son was fine, he just needed speech services, and lay our fears to rest. No such Luck.
I didn't know anything about Autism other than the dude in Rain man had it, which didn't give me much hope, as I was not a gambler. I transferred my mourning, my fear, my insecurity, and my anger into a quest for knowledge. I sought control in the only way I knew how. If I could find out enough about autism, I could beat it. Off to the library I went, where I weighed myself down with medical reference books, books on adaptive behavior therapy, gluten and casein free diets, sensory massage, language acquisition, thimerisol poisoning, you name it. I went to conferences. I sought help from a behavior intervention specialist, and attended classes on behavior modification therapy. He was making progress, but he was still having tantrums, potty training was nowhere in our immediate future, and compliance at school was non existent. He would often shut down and throw himself on the ground and would have to physically be carried or restrained.
I found myself in many situations where I was sitting across a table from knowledgeable people giving their professional opinion about my son. At age three, I sat across a table from women from our school district who were less than optimistic regarding my child's behavior and progress. They told me they didn't think he had autism, but a language problem coupled with Oppositional Defiance Disorder. I sat across the table from a neurologist that told me I needed to medicate my child, because soon he would be too strong for me to manhandle. The bathroom was my preferred place to cry.
We made the decision to move to a school district with a reputation for better services. We moved our daughter from a school she loved to a school with different math curriculum, so, she struggled. My husband and I were both working, he two additional side jobs. They had to sacrifice so much, but the move, for our son, was so positive. He began making excellent progress in school. We went to our first Individualized Education Plan meeting in the new district. Seated next to me on my side of the table was my husband. I can't tell you what it was like to know I didn't have to sit there and fight alone. His teachers and therapists were well prepared and willing to do what needed done to help our child. I left feeling empowered- like I had just left a war meeting with a strategy for taking autism down.
He indeed continued to progress, but day to day living was still a challenge. I still cried in the bathroom. I prayed every day for God to touch and heal my son's brain and miraculously make him “normal”.
One evening, we had fought over getting in the car, getting out of the car, eating, toileting, bathing.... I was tired. It was time for him to pick up his trains, and he refused to do it, but I knew I had to be consistent. I was using the “hand over hand” method of forcing him to comply and it turned into a big tantrum-y mess. I was raising my voice, my daughter must have been hiding in her room because our conflicts would always upset her so. While I was restraining him in his tantrum and telling him to calm down, what I was really doing was begging him to join the fight and work with me to resist this thing which was “autism”. And in his kicking and screaming “no” and pushing me away, my heart finally heard the words he could not say, “I am autism. You are not working with me, but against who I am. How can I fight myself?”. I finally got that this isn't cancer or aids or something that is killing my child. His brain isn't dying, it just functions differently. This is who he is. This is his world, and instead of attacking it I needed to learn what that world was like, then make him feel safe in my world so our worlds could come together. That to open the door to his mind meant opening mine first. To let him know that he could trust me and that the world is a scary place for everybody, and I would be there to hold his hand through it until the time when he didn't need me anymore.
God didn't need to fix him. He needed to fix me.
Now, we know there are no limits to what our child can do (accept be a professional athlete- it's just not in the gene pool). We are blessed by being surrounded by therapists and educators who see, not merely potential, but beauty and value in our son. We no longer sit on opposite sides of a table to fight against autism, we sit together to find a way through our own lack of understanding. To take information from one another to find new ways to navigate this life, for us and for him. We are truly a team as a family, and I no longer have to be so proud as to go cry in the bathroom anymore.
Autism: The Musical gives the viewer a glimpse into Neal, who is completely non verbal; Lexi, who's phenomenal singing voice makes you marvel that she can only communicate in repeated phrases and has none of her own words; Wyatt who wants desperately to be liked by his peers, but can't relate to them; Adam, a little guy who asks to hear Ravel's Bolero by playing bits of it on his cello; and Henry, who knows everything about any prehistoric creature or reptile anyone could every know. Each kid represents a uniquely different piece in the puzzle of autism.
Personally, it was hard to watch. It just brings up so many feelings, but truly the feeling I am ultimately left with is gratitude. Why did I watch it? I guess it felt like a good day to cry. You can find it at your public library or on YouTube by Autism Channel 17 in six 15 minute segments.
“....the reality begins to set in that: No Matter how much you love 'em, and no matter how many dollars you throw at them, this kid's got Autism. Forever. The End.” - Lexi's Dad
