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What’s it like for the majority (those who need 24/7 care) of those with autism? What’s it like to be a single parent of those who are a part of this “majority”?
Often I am asked these questions, especially after I have to cancel out on yet another event or work meeting or the rare social gathering. Friends, business associates wonder why I make less than half of the gatherings I am slated to attend. Sometimes its due to lack of sitter or respite coverage (Note: I am a single parent with sole custody), sometimes its due to an illness (last summer Alex developed Ulcerative Colitis and we were either confined to my apartment in NYC or in a hospital for about two months), and sometimes its due to the “meltdown” (more on this is a bit).
I started thinking of this today, “what its really like dealing with autism” when I read Katie Wright’s excellent post on Katie Couric’s Blog. (Written last week, see here: http://www.katiecouric.com/features/parents-of-children-with-autism-you…), and got inspired to chime in.
Katie does a great job saying how it is marvelous when the media presents as the face of autism various savants, talented artists, and quirky but brilliant kids with social issues. I love to see this too, but the fact is this is not the majority’s “face of autism”. Many of the kids on the autism spectrum (upwards of 40% depending on which study you read) are non-verbal, as is my Alex. Additionally many, the stats are something like 50% to 60% depending on what study you read, have GI problems (ditto Alex). You see little to none of this when the media presents “autism”. So while the media has done an admirable job creating awareness of autism, most folks not directly impacted still have little idea of what is actually involved, thus the questions I receive. When someone asks me on Monday, how was your weekend, I try not to say, “weekends suck”, since Alex is ‘off schedule’ and I have limited to no respite. Instead I think to myself, well I did mange to sneak in a shower at 11pm when Alex fell asleep, so all in all it was a “good” weekend!
To the meltdown. Right now Alex is melting down because it is too humid here in NYC today and he cannot handle it (inflammation). Already I have complaints from neighbors and building staff. Effectively we are trapped inside my apartment till tomorrow when a sitter is available. Unfortunately this is not unusual for a single parent, and I have great resources in NYC. Imagine elsewhere. To illustrate, it took me most of the day to write this. A sentence or two at a time during tantrums, really expressions of pain and frustration by Alex, which include biting of his hands, head banging and an intense desire to be “crushed” – which is his word for needing pressure on his abdomen to alleviate GI pain. But it did get done. And I did manage to get a shower in while Alex crashed, tired from melting down, all in all a “good” day!
So despite what you see in the media many, if not most with autism have severe limitations, many medical, in addition to some gifts. As Katie says, you do not see this side, the majority, of autism on TV or in the media. Perhaps the media powers believe it too distressing for viewers, and instead show a happy ending. But for most of us the challenge is daily, and happiness is what we make it. Overcoming the trials and transforming oneself is the key, for us as parents and for our children. The benefit is we undergo what is called a phoenix process whereby we experience anguish, emerge stronger and acquire a “hard core happiness “. Happiness brought on through transformation by the hands of the difficult.
Last month I was invited to speak at Autism One in Chicago but could not make it. Alex experienced a colitis flare and had to be scoped by his GI docs. I would like to share a bit of what I had planned to say, how we as parents can stay positive, come through the difficult and acquire “hard core happiness”.
The message starts with adopting transformation over coping as ones mindset.
Lets start there next time.
