I wasn't going to write about this. I was going to quietly maintain my position as a parent of two children on the spectrum because I have always prided myself on walking the middle ground as a member of the special needs community. I can empathize with parents who are struggling and coming to terms with a child's diagnosis while also rooting for the adults on the spectrum working hard to ensure equality for both themselves and our children. However, recently this so-called "community" of ours has become one that can't see the forest of our similarities for the trees of details that separate us.
When I began blogging in 2008 I did so because I felt very much alone. I was a single mom, newly separated, in the midst of a divorce, and raising two young boys severely impacted by autism. I knew of almost no other families like my own. I needed a way to feel a part of something bigger than my own day to day frustrations. Thankfully blogging gave me what I had been needing. I found a group of parents like myself who were looking for both camaraderie and validation. Our blogs and twitter feeds became a virtual support group. Online we made friends who understood our need to vent, share our successes, and seek advice when faced with a challenging behavior. I would venture to say that many of us did this because in our real lives we had very few peers who could understand and relate to our lives as special needs parents.
Within our community we had parents who chose different paths after their child's diagnosis. Some like myself sought out speech, occupational, physical and other therapies from our state's department of education. Others took it a step further and consulted with DAN! doctors and switched their child to a special diet and added nutritional supplements and alternative therapies in hopes of finding a cure. Despite our differences we could all agree on our love for our children and the desire to see them grow up to be meaningful members of our society. The path which would help them get there might differ but the motivation behind it did not.
In the past year I have seen a noticeable shift from listening and sharing to blaming and shaming and if we're honest with ourselves we can see our own part in it. Amongst ourselves we have the pro-vaccine group against the anti-vaxxers. Parents crying out for a cure to autism and those who want to see more being done for individuals who already have it. Autistic adults crying foul on anything resembling "ableist" language and bloggers being caught in the cross-hairs for venting their frustrations at a diagnosis that is limiting their child's abilities.
What I really want to know is when did we stop being compassionate and start insisting that our reality is superior?
Turning the spotlight on myself I will admit that I believe in vaccinating my children and all children for which it is not contraindicated due to an underlying allergy or risk of death. I don't care to spend my time or money to fund organizations seeking out a cure for autism but would rather that money be spent ensuring those who have it are given the therapies and education needed to succeed in spite of it. I have nothing but respect for autistic adults who are working hard to educate our society on what autism is and most certainly is not. However, I do not agree with their verbal flogging of parents who dare to get angry at how a diagnosis has shaped their lives and that of their child.
And that really is the point.
Each of us has our own reality and as soon as we begin to judge another for theirs based upon ours we all lose.
I am not going to judge another parent for her decision to see a DAN! doctor and read every book ever written by Jenny McCarthy because in this moment that may be what she needs to do to put one foot in front of the other after learning her child has autism. Similarly, If a parent wants to travel with their autistic son halfway around the world and visit shamans while riding horseback through Mongolia looking for a breakthrough than I say have at it because their reality and their day to day struggles are not my own and how we deal with them may be different but both are authentic and quite real to the one living them.
My sons are on the severe end of the spectrum. When I write about my frustrations with autism it is not an attack on individuals with autism. When my sons are having a meltdown in public and I am attempting to both keep them safe while also not taking a kick to the face it is fair to say that when I write my next blog post I may sound angry or frustrated by the disability which caused the outburst. However, unlike what some may say it is possible to be angry at their diagnosis without passing judgement on who my sons are as human beings.
I am not sure how to end this blog post. I was hoping to be able to tie it up neatly in a bow and come to a conclusion that was both thoughtful and challenging. What it seems I am left with is more questions. I think that eventually one of two things will happen. Either each member of the community will take a step back and examine their own reality and show those around them a measure of grace as they do the same or we will further become a community of us versus them and tearing each other down in the process.
Personally, I'm choosing the first option and if others want to continue to stir the pot and cause strife than that is their right and their reality. Just don't expect me to be a party to it.
I would urge you to read two posts written by two of my favorite authors from the special needs community about this same subject. Robert Rummel Hudson wrote an excellent piece on the Support For Special Needs site titled, "No Offense" and Susan Senator wrote, "The Feelings Remain, Regardless Of The Name". Both are excellent and very thought provoking.