"It's the most un-rock 'n' roll thing you could do, so I never ever talked about it, but that was actually my obsession before rock-and-roll."
-- Bono, on playing chess
Like a Song: Original of the Species
September 16, 2009
[Ed. note: This is the 39th in a series of personal essays by the @U2 staff about songs and/or albums that have had great meaning or impact in our lives.]
Child development experts advise expectant mothers to play Bach or Mozart while the baby is still in the womb to help foster intelligence. I altered that slightly and played How to Dismantle an Atomic Bomb almost non-stop while my son was developing inside me. I found that he could keep time really well, and as the mood of the songs changed, his disposition in my belly also changed. Those sensations are ones I will never forget.
My son is our first-born, and as such my husband and I found ourselves getting used to what parenting is all about. As with any new parents, we found ourselves second-guessing ourselves quite a bit. One thing was for certain: Our son sure did not like to sleep. Amazingly, those child development experts were onto something when it comes to music in-utero. Whenever I played "Original of the Species" for my son, it not only calmed him down, it soothed him as nothing else really could. Little did I know that it would serve as a transformational source of peace and focus for myself a few years later.
Being new parents, we weren't too sure what was typical behavior and what we should be concerning ourselves with. We consulted the typical books and magazines, asked the expected questions to our pediatrician, and did everything you'd expect new parents to do. Looking at our combined family histories, we weren't worrying ourselves with anything that seemed too far-fetched and instead just figured that "boys will be boys" and "isn't he a clever one" were all part and parcel of the road of life. But, as time went on, things weren't adding up. Our son wasn't babbling like the other babies were. As he got older, he wasn't talking. We couldn’t understand why he wasn't sleeping. We certainly did not think it was anything other than just having a colicky baby who may be a little more reserved than most kids. We have plenty of friends who said their child didn't start talking until the age of 2 or 3, so we didn't think anything of it.
Over time, the line "I'll give you everything that you want, except the thing that you want" became my mantra in terms of my son. It did not matter what I did for him or gave him, he wasn't reacting the way that I had expected him to. Now, to a new parent, this was confusing at best. As we found out from autism experts, all these things were red flags that something just was not right.
On our son's second birthday, we were told by an autism expert that there was a high likelihood that he had an autism spectrum disorder called PDD-NOS, or pervasive development disorder –- not otherwise specified. As my husband and I sat at the doctor's table in stunned silence, we were instructed to have additional evaluations done and to enroll our son in a variety of different therapies, such as sensory integration therapy and ABA therapy. This was when the line "And you feel like no one before" stuck to me. As we became more educated on this diagnosis, we realized that the odds of an autism spectrum disorder are 1 in 150. What made my heart sink was that his sister was born a month before our son's second birthday, and the odds of siblings having an autism spectrum disorder if one sibling is diagnosed increases to 1 in 5. After meeting with a neurologist at a local children's hospital, our son was given the formal written PDD-NOS diagnosis so that we could start the aggressive therapies he needed. As of today, our daughter is not showing any signs, which we are thankful for.
Over the past six months, our family's focus has been on therapies, treatments, evaluations, and education. We are among the lucky as our son was diagnosed so early that he has the greatest opportunity to make a full turn around as his brain is still malleable. While there is no cure for an autism spectrum disorder, the effects of it can be reversed through hard work and training. We still have a long road ahead, but as the song goes, "everywhere you go, you shout it."
This change of direction that our family has gone through has placed us on a path that we never imagined. It is hard to describe, let alone comprehend, the reality we live in. Our son cannot tell us yet what bothers him, what frustrates him, or what can set him off into a meltdown. We have every expectation that one day he will. What he is able to do is teach us about compassion, patience and, most of all, understanding as he has the biggest heart you'll see in any child. He certainly lives up to the lines "I want the lot of what you've got, and I want nothing that you're not."
This is a difficult thing to talk about as most people don't know how to handle the news. Some close to me are still in denial about the diagnosis. But as the song says, "you don't have to be shy about it." Had our son not been diagnosed when he was, we may be facing a far greater challenge than we are today. It is my hope that our family's story can help others out there who feel in their gut that something isn't right. Catching something like this as early as possible is the key to a full and complete turn-around. We have every hope and expectation that our son will be integrated into a traditional classroom beginning in kindergarten. We have been told by several autism experts that we can expect this. While we're still a few years from that, the progress made thanks to the therapies and experts willing to make this diagnosis, we can be on the path we're on. The key to all of this is to remember that our son is still a child and, as such, deserves a childhood full of play and fun. So, as the song begins "Baby slow down, the end is not as fun as the start. Please stay a child somewhere in your heart." I keep that in mind as much as I can, and as hard as it is for me and my husband, we try our best to keep the childlike qualities alive and well in our family's hearts. It's so easy to get caught up in the black-and-white medical mumbo-jumbo, and sometimes you just have to take a step back and have fun at the playground or with glue, glitter, and construction paper. "Sugar come on, show your soul" -- nothing says that better than our son's artwork.
The past six months have been such a whirlwind, and I haven't had the chance to really absorb all that has been happening with our family. I haven't had the opportunity to deal with the emotional side of realizing that my child is battling something like this. I know there is a wonderful support network available, and I rely on that quite a bit. I am thankful to have a song like "Original of the Species" to count on for support -- not only for my son, but for me as well.
© @U2/Lawrence, 2009.