Estée KlarThe Joy of Autism

When I wrote The Joy of Autism blog, I wrote a mantra with one line that said “because joy doesn’t come without struggle.” I don’t know if it’s part of the way I think about things, something about me, but my friends certainly share the struggle part. I am lucky to be able support some friends in some difficult times right now as my friends are supporting me. I have to think long and hard these days about joy and struggle and still, I am so convinced that if people understood autism a little more, we would not have necessarily had insult added to injury in the emergency ward.

Adam and I returned from the hospital yesterday after observation Friday night. We did not go to our usual hospital, and the benefits of not going to it may have been some extra attention in the end. But attending emergency was a bit of a nightmare as everyone who registered after us, got admitted before us, even though they didn’t look that ill at all (and consequently they all got discharged while we were still sitting in emerg). After having asked the triage nurse “how much longer, can’t you see he’s in pain writhing over there,” in a relative calm voice, she told me not to yell at her (are they trained in saying that even though someone is not yelling?). I had to do my part in managing her the way she was, I suppose, trained in managing me. It took some, let’s just say, urging after that to get Adam in (she had been lying about the crowds in the hallways inside because once we got in, it was relatively empty) or else we would have likely spent another three hours just sitting there without any help or attention. There was absolutely no visibly known/obvious reason for this after we were admitted.

Many families can imagine a child screaming so much til they are red in the face. In addition to whatever is happening with Adam, going to the hospital and waiting is one of his number one stressors. “Can he at least have a sedative?” I asked after waiting six hours like this, Adam’s face apple red, his lips quivering, his whole body shaking and contorting into a letter C. Nothing.

Thankfully, from my trip to Paris, my bag was full of goodies. I found melatonin strips buried deep at the bottom and after six hours of waiting for any kind of help, gave him a strip. By the time Adam’s dad and grandfather arrived, the edge was gone and Adam was lying on top of me on a gurney.

The doctor was prudent enough to want to observe Adam overnight and I got to sleep with him in the pediatric ward. Later arrived his bag from home with DVD’s, some food, his P.J’s so I could try an emulate the comforts of home. Bloodwork was then taken with little trouble due to the melatonin and the hours of previous crying which had completely exhausted Adam.

My mother went to the nurses station. “You are the talk of the station,” she said. “They didn’t know melatonin worked for autistic kids.”

YIKES, I thought. Melatonin may not work for all autistic kids. In fact, some families have told me melatonin stops working. While I am grateful for the female doctor (not from Canada), for her soft bedside manner and her prudence with regards to his body jerks and spasms, I am still very concerned that hospitals do not understand the needs of autistic people and the stress levels that going to hospitals can create. I mean, as Adam was screaming, one staff in emerg said “Oh you mean he isn’t always like this?”

And readers of this blog and my Facebook will know that uh, no, he is not “always like this.” Adam does not always spasm, contort, and melt-down. He has some anxiety but he is a very happy little guy. In addition, what would have happened if I did not have that melatonin on me?  I mean, his heart was beating so fast I was concerned he’d go into cardiac arrest. When they witnessed the calming effect they said, “Can you give him another 3 mg before we give him his bloodwork?” Folks, as “autism parents” we have to advocate for our children, and carry our “bag of goodies,” every day. Some days it seems that there is no one out there to help us when the times get tough. When there is one good person, they shine like the rays of light in an otherwise dark day. It is a universal truth, I believe, that every single one of us finds the “advocacy” part exhausting as our children our lumped into the autism stereotype. And it’s not helping, that stereotype, and this is what I hope to stress here in this post. It just seems to mean that Adam gets ignored because of it. Well, at least in the emergency ward (which needs a complete systemic overhaul in my opinion).

While we await an EEG this week to hopefully rule out epilepsy, I am rudely awakened, despite all exhaustion today, that we still have lots of work to do. There is joy, there is struggle. There is paradox. As my grandfather always told me, “that’s life.”

My friend Leda sent me this piece of music today (see below). It calms me after the “storm.” I think Adam will love it because it is calm. It’s sad and beautiful and just a piece of music for the moment because I am worried and a little “spent.” Yet, even in this struggle, Adam is my joy and my life. He is the joy in our autism and for and because of him, we keep on going despite all with which we must deal.

In the words of Goethe: “Der Zweck des Lebens ist das Leben selbst,” I believe life is not just how “good” we live it (that has been filtered down in our society to mean something quite trite) but in accepting and living with its struggles. Afterall, we just don’t seem to have a choice.

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