In London, while you’re waiting for the “Tube” (aka the subway, the metro, the large underground train), there is a wonderfully recorded British female voice intoning “Mind the Gap”…. (series of incomprehensible directions)… “Mind the Gap”… They’re warning you to pay attention to the space between the train car and the platform. It’s a narrow gap and there are bright yellow lines attracting your attention to it. I made the mistake of looking down the gap one time when I was getting on the car, and was struck at how dark and deep that hole is.
A girlfriend of mine is approaching that gap. She’s not in England- she’s in danger of losing her job. She’s casting about, worrying, wondering. She sees the line of where her present life might end, and isn’t quite clear about what comes next. She sees the end, but not the next shore.
I’ve been there; you’ve been there- we’ve all been there. And that gap is terrifying.
That space between this- the known- and that- the unknown. The space between what was, and what will be. The space between when you don’t know how deep it is, how dark it is, or how long it lasts. When was what- even if you complained, even if you whined every now and then, represents familiarity and comfort and stability. Where you knew what you dreamed about and what you sought to be. But the gap- that space is one of unknown dreams and unknown directions and unknown challenges and unknown possibilities. It means living in the moment because the past is too painful to think about, and the future is vague- where you define what is essential to you- your life, your family.
There are names for this space between. Depression. Grief. Transition. Coping. Learning.
We’ve all been in that Gap, that space between- it’s part of growing up. For me, there have been job losses, sweetheart losses, parental losses. There have been family shifts that were in that place. Certainly, the space between is not limited to autism parents. But if you’ve been there- that unique space defined by the label “autism” and its other hobgoblins- it indelibly changes you.
In my last post, Elizabeth asked “So, now what?” and her comment brought back to me one of the most powerful “spaces between” that I have ever encountered. That place where we had a label; we had a name for IT- the whateveritwasthatwascausingproblems- but that was it. We had a word to Google and we had a word to describe IT. But then… what then? We were in that space between- between what “is” and what “was”- vague worry and new realities. Between not knowing that there were choices, and making decisions.
And while I was in that gap, I was silent. I was screaming on the inside, but it was everything I could do to talk to my husband and my mother. I alternated crying with reading. I had no words when I was in the gap. There were days I could barely get out of bed, and days that I couldn’t go to sleep. The space between is a place that is dark and muffled and you feel like you’re drowning in a ocean of blackness. I would swing wildly between throwing my energies into action and complete hibernation.
Therapy helps. Jess, in a wonderful post, reminds us all how sharing the burden can help- that when you are least capable of asking for help is the very moment that you must ask for it.
Research helps, too- sometimes. Googling the word “autism” gives you 10 million hits- 10 million stories, bits of information, truths, a few lies, products, lots of studies and even more speculations. Nowhere in those web pages did I see something that said “This is what it is for you. This is what it is for Elizabeth. This is what you should think, feel, and DO. This what you can expect and this is what you should dream. And this is what you can no longer plan on. This is what your new normal is.”
For that, I learned to read blog posts by mothers going through it; I learned to read books by mothers who had gone through it, and I learned to read blogs by people with autism and Aspergers. They couldn’t tell me about MY family, or my normal, but I could see their “normal”. I could see how the science of research turned into the art of living. I could see how they had made it through the ocean of their between-ness onto their own more stable shore.
For now- because one of the things you learn about this shore on the other side of the space between is that it changes, it shifts, and the presence of the space lurks. A major moment like a milestone or a holiday can put you back there; or a minor moment like a glance from a stranger.
Having reached our own shore, our own place of understanding what this the whateveritwasthatwascausingproblems/ butisnowpartofourlivesandwhosheis, I appreciated the ones who had gone before. People like Mom-NOS, Susan Senator, and Patricia Stacey. I felt that support as a hand reaching out to me to pull me out of the gap. I was deeply grateful. And now, I feel the support of other mommy bloggers who are still going through it with me- not pulling me out, but helping me navigate through it. And I am deeply grateful.
For that reason, I want to reach a hand back to those who are in their own gaps- the space between identification and a new normal. The place of “Now, what?” I wrote my book as a way of helping others- just as I was helped. I blog to reach others who are Googling. I know what a community can mean to those who are drowning.
To those folks- and to any others like my girlfriend, I want to say “You are not alone”.
If you are hurt and angry and frightened- you are not alone.
If you are depressed and tired and worried- you are not alone.
If you are struggling with autism, read my book “Children with High Functioning Autism“, read “The Boy Who Loved Windows“, read The Autism Mom’s Survival Guide, read Gravity Pulls You In, read Diary of a Mom, read Elvis Sightings, read Unother One, read Autism Mommy Therapist, read Big Daddy Autism read Ballastexistenz. You are not alone.
Mind the Gap, but know that in the space between, you are not alone.