I have been working on a post for awhile now about the emotional strain on autism parents, especially those of us who choose to try to heal our kids. How we have been found to have the same level of stress hormones as soldiers in active combat, how we often develop PTSD (Post Traumatic Stress Disorder) from watching our children regress into autism and struggle. How we become isolated as friends and family walk away or turn their backs on us in our time of need (some do choose to stay and we are SO grateful to them), because we are "crazy" and we just keeping talking about autism, because autism changes us and places demands on us that others say it shouldn't. How our dedication to helping our kids is used as evidence that we are mentally ill and the genetic source of our kids' neurological disorder.
We are society's new leppers. We are reviled by so many, and people avoid us like the plague- pretty much literally. Journalists, public health officials, government officials, doctors, school employees, talk show hosts, etc single us out as society's punching bags. It has become a regular pastime of these people to metaphorically put us autism parents (who are written off as anti-vaccine propagandists) in "the stocks" and throw rotten tomatoes at us for sport. We are easy targets. We are tainted with the stench of not believing everything we are told by Those Nice People In the White Coats and questioning authority, and people who are comforted by the message "nothing to see here, move along.." turn away from us in disgust lest our taint contaminate them and pull them from their denial. It sounds harsh I know, but as I've said before...welcome to my world. If you doubt me go look at the comment section of any editorial or article that suggests autism may have biological causes, and that those causes are likely environmental toxicity. You will see a parent or "quack" being rhetorically ripped limb from limb.
But I will write that post another day (or maybe I just did?). Today it is much more personal. Today a perfect storm came together and put a crack in the wall that holds back my deep wordless sadness and anger for what has happened to our family and other families like ours and what we have all lost. When we were in the thick of it, working to heal our son, I was in "fight mode" and a part of me knew that I didn't have the time or resources to deal with the intensity of my feelings. That part of me knew I needed to focus on my kids' and my own health, and it set those feelings aside behind a wall to be dealt with later when I had the space to do it. I've been keeping us very busy since Roo reached recovery earlier this year, partly to focus on enjoying what's left of the kids' childhoods but I also realized this morning because I fear looking at those deep dark feelings. I'd rather keep myself busy and distracted then unpack that baggage.
The first chink in the wall happened when we set in motion the process of selling our house this week. I was surprised to find myself paralyzed by anxiety when faced with calling the real estate agent. When we bought our house 8 years ago, we were a young family with two small children with all the exciting possibilities of childhood ahead of us. Within months of moving into this house, one of those possibilities, that we hadn't considered, manifested when Roo regressed into autism. Over time the house slowly fell apart around us as all the money that was going to fix it up "all nice and cute" (or at least keep pieces of the ceiling from falling down and the doorknobs from falling off) was redirected into health costs that weren't covered as we tried to figure out what was happening to our children. 8 years later, autism has taken a financial toll on us that means we can't afford this house anymore and it is time to move on. We are quite lucky compared to many other special needs families in that we are at least not being foreclosed on, an insult added to injury that has become almost a rite of passage in this community.
This house, and this neighborhood are haunted by autism for us and it does feel like it is time for us to move on emotionally too. I've been looking forward to getting out of the house for a long time, and was completely broadsided by the feelings of grief and anger that moving forward brought up in me. This was the first chink in the wall, the next came from my 4 year anniversary this week of the "cardiac event" (mild heart attack) that marked the onset of my own neuroimmune disease ME/CFS. This week a friend won a lawsuit in regards to her son's autism that reminded me of the massive scale of what is happening and is preparing for the next stage of the fight. I was told by a "vaccine advocate" that "I hope you have a baby and it dies", which is pretty par for the course and just goes to show how much these people are motivated by concern for the safety of infants. This week I spent $500 on supplements (to last for months) that we need to counter the damage that the mercury in our bodies is doing to us. I also had a wonderful conversation this morning with Roo and listened to him make a new friend over skype while playing online. What we do is worth it and I would do it all again but at the same time the check for the emotional fallout has come due. God help me.
