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Keep Hope Alive

I scooch Justin over in his big comfy chair so we can snuggle, and I can hopefully reduce the rocking that might make the test he’s undergoing invalid. He smiles at me through a web of plastic, looks delightedly into my eyes as The Polar Express plays on his DVD player. It’s a favorite of his, and I brought it and an armada of others in an effort to keep him occupied while a lovely technician records the workings of his brain. We are here for almost an hour-and-a-half but the activity we wanted to record, the staring and eye fluttering and hand shaking tremors that are so disturbing, happened in the first ten minutes, and I’m grateful the technician was so speedy in her ministrations. I knew going in that he might not exhibit the behavior we’re concerned might be seizures, that the test might be for naught.

The truth is I no longer look for miracles, but I do want answers.

This is not our first time at the EEG rodeo. We were here in 2012 for this exact procedure, then at CHOP in 2013 for an overnight, which I truly hope we will not have to revisit. Both visits pronounced him seizure-free, including a doctor at CHOP who growled at my husband early in the morning that “he didn’t know why we were even here, he has autism,” (who knew, thank God someone finally figured it out!). I am hopeful when we get our neurologist’s pronouncements next week that his status will remain the same, however I’m not sure that will get us much closer to an answer.

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When he enters into these trancelike states, it is impossible to divert him. We can’t get him to put on his shoes and leave the house for the bus. We can’t get him to bed. We can’t get him to eat. We can’t get him to leave the house, even for his beloved horseback riding. He is displaying the behavior at school, which makes it difficult for him to transition from activity to activity. More importantly, we lose the essence of him, the sweet smiles and desire for connection our boy displays so readily.

Much more than I want answers, I just want to help my boy.

I could tell you that I’m sad and I’m worried about my son, and that would be true. I will also tell you that after fourteen years of autism in the house that I am finally able to acknowledge that anxiety but not let it destroy me. I have learned over the years that so much of Justin’s autism and OCD is cyclical. I have taught myself how to pace my concerns, take everything one test at a time, one evaluation at a time, one call at a time. I will tell you that it has saved my sanity.

And with autism, it is really really important to retain your sanity.

By the end of the week there will be a report sent to his neurologist. By early next week there will be phone call or an email to me discussing the findings, and a plan will be put into place. There may be answers. There may not. The plan may take weeks or months to fully play out, and we might be in the same place we are now. I’ve learned to accept that fact too.

That one’s still not easy for me.

The other reality is the behavior might just go away on its own, as so many of the things that have made raising Justin difficult have disappeared over the years- most of his aggression, his aversions to eating and sleeping, his perennial discontent with the world around him. I know for him I must have hope that this too shall pass.

Hold onto that hope as tightly as you hold onto that sanity.

I know some of you reading this may be going through difficult, even excruciating times of your own. Perhaps your child is hurting himself or others. Perhaps her words have disappeared. Perhaps he has stopped eating. Perhaps you worry he will never sleep again.

I remember those sleepless nights very well.

If you only take one thing away with you when you leave this page, let it be this. Along with death and taxes, the only other sure thing in the universe seems to be that autism is cyclical in its manifestations. With a teenaged severely autistic son in the house I feel somewhat like a veteran at this point, and both in my experience and that of my friends with adult autistic children I can honestly say behaviors come and go.

So if you’re struggling, hold onto hope that this too will get better, that the situation is temporary, not permanent. Keeping despair at bay as much as possible will help you keep a more clear perspective on the situation, which is invaluable both to you and your child. Ask for help when you can. Keep yourself as healthy as possible.

And remember hope.

For more on my family visit my blog at

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