I recently discovered the NBC TV show "Parenthood" and it's just everything I love in a TV show: interesting, realistic family dynamics and great writing, actors who seem perfect for the roles and wonderful nuggets of family life within each episode.
There is a scene in the most recent episode (direct link to full episode, "The Booth Job" here) where Monica Potter's character Kristina Braverman (love this last name, by the way) attends a support group for parents of kids with Asperger's syndrome. (Her husband Adam, played by Peter Krause, doesn't want to go and so she attends on her own.) Kristina explains that her son, Max, is 9 and was diagnosed about a year earlier. She then deflects the attention from herself and another woman starts to share what's going on in her life.
I cried in MacDonald's today...I've been so stressed out being at home with Anthony, my 6 yr old with Asperger's, all the time. My husband leaves for work at 7 in the morning and sometimes I don't see him until 9. And it's just me and Anthony, all day. ... I love my son, but it's a little like living on an island all the time, with these rules, these rules that don't apply to other people. Thinking all the time, "should I drive home a different way to avoid that dog?", living with this pressure all the time that it feels like you can't breathe...
A child who is different... years ago, twenty years ago my "different" child was 9 and we did not have a home computer. I had never been on a computer. No internet, no Facebook, no Twitter. Hard, perhaps, for a young parent today to imagine, but this was in 1990. No local support group. Though active in a large church, though having lived in the community we were in since pregnant with my child who started school at age 3 in a special needs class, I did not know one other mother who had a child anything like mine. (And that may be indicative of my introverted personality, the social circle I was involved in, not simply the availability of such a support network...) So when I heard the actress say "It's a little like living on an island all the time..."
It's a lot like living on an island all the time. And, even today, even with support groups and fundraising walks and the Internet and Facebook; at the end of the day it is two parents (or one) in a house or apartment with all the "stuff" of life -- the ups and downs of marriage and relationships, the money issues, the health issues, the hobbies and friends and job issues -- and then the Really Big Issue that puts you on an island that keeps you separated from the Way You Thought Your Life Would Be. And on that island you can only look out across the water and see an image in the distance of what you expected.
Profound Hearing Loss;
likely a genetic disorder never identified, 'not this, nor this, nor this,
When you have a child who is "different" there is no end to the labels professionals can attach to him, that society will seripitously assign him, that you yourself will unconsciously give to empower or limit him. It's a minefield and you embark on a walk through it without a map and likely in your twenties or thirties when, and I can say this now, you haven't even been a grown up that long yourself. When I think that the universe entrusted me with the care of small children when I was in my twenties I want to say "Do you know what the hell you were doing?"
When your child is different.... it helps to have connections with other parents who have these thoughts running through their head: "God damn, it's morning." "What did I do to deserve this?" "I love my child so much, it hurts, it hurts, it hurts." "Will I ever have a minute to myself again?" "I didn't know it would be like this." "I don't understand what's going on here." "How am I supposed to handle this?" "Eighteen years of this?" "I'm way past tired." "No one understands." "Why?"
The feeling of being on an island can be overwhelming. But, today, know that you are not without resources to help. There are others who know what you are going through. There are other islands out there and you can connect with them.
So, there is like this place where the water is very deep and interspersed throughout this deep water -- close enough to see most of the time, but sometimes not -- are all these other islands with all these other parents and kids. And some have boats and some do not. And some once hated their islands and then found the flowers and trees and wildlife there to be interesting and important, and some still hate their island and just want to get off. And some are older and have been on the island a while and have built a tall firetower to head off danger and also to wave to the other islanders. And some have dug a pit and buried everything they dreamed of and felt and they don't know if they'll ever uncover those dreams again. And some have planted a garden and harvested new dreams.
Some have buried their children and some have launched their children in boats of their own to live on islands of their own with tools their parents gave them. And now these older parents send out bottles with messages of hope in them, perhaps bottles that medication once came in. Perhaps wine bottles of the wine they dumped out because they realized that while you can deaden the discomfort of having a different child with alcohol or pot or medication or sex or anger or blame for a little while, nothing helps in this struggle quite as much as facing your fears and ignorance and limitations and coming up with a flexible plan, slapping on an optimistic face, counting your blessings and realizing that a lot of people in the history of the world -- and indeed in the world right this minute -- are figuring out things a lot more challenging than you face in your warm and safe little home with a person younger and smaller than yourself. I like to think the bottles are those pretty blue ones that Saratoga water comes in... Anyway...
When my son was a little boy the pediatrician was sympathetic. "I know some parents have to deal with problems that are much worse," I said, leaving his office one day when things were really coming to a head and I knew Something Is Really Wrong With My Child.
"Yes, they do," the doctor said, "but that doesn't make your job any easier."
It was the most compassionate thing anyone had said to me up to that point. (Here is a helpful review of the book. The reviewer points out some very interesting things, pros and cons, about the book.)
Then, go online and find a support group, a chat room, a new book, a local or regional association or government agency that provides information and support. Build respite care, however you can find it, into your life and connect with parents of older children. We have been there. We've been that isolated, exhausted, frustrated parent you are now, aching with a love so deep for a child who seems so unknowable. And things can get better. You will get stronger and wiser, and, like the title of a very good book, "You Will Dream New Dreams."
You might feel like you're on an island, but you do not need to be isolated, not anymore.
(Here is a helpful review of the book. The reviewer points out some very interesting things, pros and cons, about the book.)