Tag Archives: isolation

Turns Out, It’s a Small World After All

When I made the decision just a few short weeks ago to start writing this blog, it was partly because I felt isolated.  We do not have an active support group for parents of autistic children in this county, or any active support group for special needs parents of any kind for that matter.  I knew that there were other parents of autistic and Asperger’s children in the school system, but – because of student privacy issues – also knew that I cannot contact these parents out of the blue to ask them to to join a support group.  So, with the exception of one other set of parents that I knew, whose ASD child is several years older than my own, I felt rather singular.

With the WordPress.com address in hand, I set out to make connections that I didn’t believe I could find here.  And, boy, did I find connections.  Suddenly, I am corresponding with people from Australia, Columbia, England, Vietnam, South Africa, and more.  I have met parents of grown children who have been where I am now.  Parents who amaze me with the ability to juggle two, three, four, or more ASD kids within just one household.  And parents who are right where I am now – just beginning, with way more questions than answers.

So, I find it somewhat ironic that, in my effort to explore the blogosphere and world for people like me, I ended up coming across one right here in my small town.  Earlier this week, while sitting in a waiting room, a woman whom I was chatting with noticed my new necklace pendant.  My father gave me a silver puzzle piece pendant for Christmas.  When I began to talk a little bit about my son, she told me she had suspected so because of the puzzle symbol.  And as soon as I began to share with her that I write a blog about it and have found this wonderful community of people like us out there, she began thanking God – talking about how alone she had been feeling all this time.  I gave her my blog address and asked her to please contact me on it and that, maybe, we could find a few other local people to start a support group.

She began to tell me about her child, her struggles to get anyone to take her seriously, and how, because of lack of understanding in her family, she has been keeping the diagnosis a secret.  Here she is, in the very same small town, feeling isolated because of a lack of understanding and a lack of parent support and community education about ASD.  This tells me that, despite the wonderful progress being made, we simply haven’t come anywhere near far enough.  For, if 1 out 0f 91 children had a particular disease, you could bet there would be a lot more governmental and public attention – as well as enormous community support for its victims.  But take a developmental disorder that makes some people feel uncomfortable – or inexplicably embarrassed – and you end up with all these little families like islands unto themselves.  My heart broke for her and for her obvious desperation and fear.

I’ve been catching a little local displeasure this week.  And, let me be the first to say that I am new at this.  Putting myself and my children out there for the world to see has been a new experience to say the least.  Perhaps I didn’t do it so well.  Perhaps I should have used an alias.  Regardless, I’ve made the bed, and it’s a little late to undo it.  I have been questioned as to whether or not it was the right thing to do to share my children’s lives.  I have upset people who feel that I have hinted connections to them to via this blog.  For that, I’m sorry.  When I began this blog, I thought that I might get 100-200 people who might follow it and be a source of shared experiences for me.  I certainly didn’t expect to go viral.  I didn’t plan for anyone local to recognize clues to any real people as I didn’t really think anyone local would be taking note of an obscure parent autism blog to begin with.  Obviously, I am going to have to work on making some actual experiences a little more hypothetical and not alienating real people, for that is certainly not my intention.  Lesson learned.

But I have learned something else that I wish I hadn’t.  People clearly do not want to talk about or be associated with autism.  For, if a child were stricken with a life-limiting disease, there would be dozens of Facebook fan pages popping up.  There would be fundraisers and a local biker group doing a benefit ride and charity concerts.  And – no one- and I mean NO ONE would be the least bit upset to be connected to it in any way possible, would they?

No, autism is not a disease.  It is not contagious.  It is not even a tragedy in its higher functioning forms.  But, in its severe forms, it darn sure can be life-limiting.  It can rob our children of communication.  Their parents might not ever, ever, hear the words “I love you” from their children.   It can rob our children of friendships, because some cannot connect to others.  It can rob them of an education, because they might not be able to learn the way they need to.  It can rob them of affection, because they might not be able to withstand the physical discomfort of their own mother’s touch.  It can rob them of dignity, because they might not be able to be toilet trained or be self-sufficient in adulthood.

If that isn’t life-limiting, I don’t know what is.

I’m angry right now for every mother and father I’ve heard from who are facing the challenge of autism alone.  I’m angry at their families, who persist in convincing them they have something to be ashamed about.  I’m angry at school districts around this country who are ignoring the fact that so very many children in its classrooms are affected by a condition that needs specific, research-based interventions to help them reach their potential.  There are districts around this country without a single expert in autism even advising them, let alone teaching and providing therapy to their students.  I’m not getting political and making a plea for more money.  I’m suggesting we take a good look at the money we are already spending.

And I’m angry for this one loving mother, feeling alone and powerless in a family and world that sends messages to her to keep silent and, thereby, ashamed.  I’m angry that she has to listen to child care providers who suggested, through their ignorance, that autism is synonymous with mental retardation.  I’m angry that the only person she feels she can connect to is a complete stranger in a waiting room.  People, I think we can do better than that.

So, I may not be doing this right.  I may be stupid in my belief that transparency is the way to de-stigmatize ASD. I may have made a mistake putting our lives out on display.  But I can’t help but believe that the more people who are out there telling the world about their children and shouting the need for autism awareness and support will one day mean there will be fewer families enduring this alone.  And fewer children trying to stumble their way alone through a world that, with just a little more awareness and a deliberate approach to educating autistic children, could help them to realize the futures and dreams that all people share for their children and for themselves.

When are we, our families, our communities, our school systems, and our country going to stand up and admit that the Emperor is not wearing any clothes?

Love Life, Be Brave.

I’m learning more than I ever wanted to know these days.  Lessons about isolation, humility, frustration, real fear, unconditional love, what’s important, patience, gratitude, and so very much more.  But what I have really learned the most about is friendship.  Friendship takes on a whole different meaning when your life is affected by ASD – or any crisis or special-needs issue that affects your child.  For, no matter how much your friends love you, there are some things in life that you cannot possibly understand until you have experienced them.  Please do not misunderstand me.  I have dear, dear friends who have kept me sane throughout the last year of panic, paralyzing fear, occasional depression, sometimes regression, moments of joy, and my inevitable obsession with learning more about my child’s condition.  (It’s even worse when you are a librarian.  lol)  They have tolerated me obsessing, repeating myself, forgetting to ask about their lives, and every other way I have slacked off in the friendship department over the past year.  (You guys know who you are, and I love you.)

But there is a part of my heart now that even they do not have access to – that part that toddles around, smiling and flapping away, still happily oblivious to the difficulties facing him.  That part of me is only accessible to those who know.  That kind of friendship and sisterhood/brotherhood is intimate indeed.

I have such a friend.  Her name is Christy and, though neither of us ever dreamed years ago we would find ourselves on a similar path, she is now the reason I believe in destiny – that certain people are simply meant to find one another.  I believe that we both endured a summer of algebraic torture in college simply because the two little souls who were destined to affect our lives would one day be arriving.

Christy has been on this road for longer than me.  Her journey raising a special-needs child began in 2001, with a CMV affected child.  (Read her story.)  And, though we were friends, I didn’t truly understand her pain and isolation.  It wasn’t until last year that our friendship took on new meaning for us both.  When I began to face that Callum was on the spectrum, I reached out to her.  I sent her a message apologizing to her for all of the missed opportunities  to help her and for all of the times I could have been there more.  But , she already knew more than me and wisely informed me that I couldn’t possibly have known.  She, with open arms, welcomed me to a club you don’t imagine yourself joining.

And she gave me a gift.  A gift that I explain each and every time someone asks me about it.  A gift that makes me cry again just writing about it.  She pulled out of her purse a small box.  In it, was a silver ring.  It said, “Love Life”, and on the inside, “Be Brave”.

And then she stunned me.  She told me that she had a matching ring.  For, years earlier, she had seen the ring and knew, simply knew, that one day she would need to give it to someone else.   She didn’t know who, but she had kept it for years – until I emerged as the person who needed it.  I now wear that ring every day.  It has become as valuable to me as my wedding band.  It has become my mantra on hard days and my joy on the good ones.

Over the past few days, my readers have also taught me much about friendship and destiny.  To each and every one of you who have reached out via Twitter, Facebook, Email, and this blog, thank you from the very bottom of my heart.  All of you have also been placed squarely on my path in this new journey.  Your words and support are no accident; they are destiny.  Thank you for the open arms into which you have also welcomed me into The Club.   All of you have reassured me that it’s gonna be okay.

Thank you to my dear friend Christy and all of my new dear friends in the blogosphere.  You are all my heroes.

Love life.  Be brave.