The first 2 stages of the grieving process are shock and denial. For mothers of special needs children the order is reversed: it’s denial, then shock. Subsequently, the first and most dangerous stop on the road to Acceptance is Denial. I have never taken any drug stronger than marijuana, but the effects of substances like heroin have been described to me, and life in Denial sounds eerily similar.
The road to Acceptance is very strange, because none of us can remember exactly when we got in the car. We just woke up one day, on an unknown road, with no map, no cell phone, and no clue where we were supposed to be going. All that kept us driving was the COMPLETE inability to turn the car around and go home. We weren’t allowed, not yet at least, and we didn’t know why. And just when it all became truly terrifying, the road curved, revealing the most spectacular landscape we’d ever seen. A sign emerged: Welcome to Denial.
In Denial there is valet parking and the attendant is Chris Hemsworth in his Thor costume, complete with the hammer. And just when you thought things couldn’t get any better, you notice your son is there, and he’s perfect. The creeping suspicion that something is wrong with him has evaporated. You were wrong, he’s fine, and you were just overreacting. After all, plenty of little boys drool like sheepdogs until they’re four. Even more run around in circles flapping like a bird when they’re frustrated over their inability to communicate. In Denial it’s common for baby boys not to crawl until they’re 12 months old, and even more common for them to require physical therapy at 18 months, because they still can’t walk. Right now Kevin is outside in the 35 degree weather in shorts, pissing on a tree, in full view of our landscapers, who think it’s hysterical. If I was still living in Denial I would think this was perfectly normal, but I’m not. I left a long time ago, and if you and Thor are reading this from your Barcalounger by the pool in Denial, run. You heard me: run. Get out now. Denial is dangerous and if you stay too long it will destroy you and your son, and it will be your fault. Deep down you know you’re in Denial, you just haven’t left because you’re afraid of what might happen if you do.
If my words are not convincing enough, get out of your lounger, give Thor a nice tip and take a stroll. Notice what you don’t see anywhere? Mirrors. There are no mirrors in Denial because if there were, you might have to take a good, long look at yourself and admit you’re wasting valuable time (that COULD be spent helping your son) sitting in a Barcalounger with Thor. Thor wouldn’t want you to have to do that, it would ruin the fun, so he smashed all the mirrors with that hammer of his. Continue your stroll and you’ll notice that most of the women in Denial have young children, and the few who have older children seem strangely out of place. Why is that? Because all the good mothers woke up, realized they were in Denial and left a long time ago, before their children were too old, and it was too late to help them.
Still not convinced? Well let me tell you a story. I am acquainted with a lady who only left Denial a few years ago: Her son is 12 now. When he walked into his first day of preschool it obvious to just about everyone including the janitor that this kid was disabled. It took the Child Study Team 5 minutes to offer testing and subsequent special education services. She turned them down, because there was nothing wrong with her son. By the end of preschool, when he was still pissing his pants, destroying the classroom and pulling children’s hair, the school suspended him and told mom she couldn’t bring him back unless she agreed to testing. She finally gave in. He was classified as “communication impaired” because Mom would rot in hell before anyone called her son autistic. Although the school offered to send him to YALE, the finest and most expensive private school specializing in children with autism and behavior disorders, she refused. “You’re not going to ship my son away”, she said. Then they offered to place him in a special education classroom. To this she said, “Most of the children in there have Down Syndrome! He needs to be with “normal” children! He’ll never learn to socialize if you put him in there!” After all, what did the Head of our Child Study Team know? A woman with 17 years of special education experience and a Master’s Degree in Child Development. Please. FYI: Mothers in denial think that if they put their disabled son in a classroom full of “normal” kids, the normal will rub off and their son will be cured. Thor told them so, and he’s far more reliable than the head of the child study team.
Anyhooo……Though they knew it was wrong, and because the law always takes the side of the parent, the school placed this woman’s son in an inclusion class with an assistant. After a few years she even refused the assistant: that lady was no help at all and made her son “stand out” in class. He rotted away, disrupting and alienating his regularly developing peers, learning absolutely nothing, for 8 years. When he graduated grammar school he couldn’t read or write, had no friends, and no social skills to make any. My acquaintance will look you straight in the face and tell you this is all the school’s fault, but it isn’t. It’s her fault, and deep down she knows it. She never left Denial, she was forced out by the realization that she sat in a Barcalounger with Thor rather than admit her son was disabled and get him help.
It’s too late for my acquaintance but not you. Grab your son, get in the car NOW and start driving. Eventually you will find yourself at the top of a high hill, before a large gate, which is guarded by someone you loved and lost a long time ago. For me it was my Aunt Rose. This is your mind playing tricks on you, so you’ll return to Denial and be spared the shock that waits beyond the gate. I still remember the dream I had about the exit gate in Denial and the conversation with my aunt.
Aunt Rose: Hello Elizabeth (that’s what she used to call me)
Me: Is it really you?
Aunt Rose: Of course it is. I’ve missed you so much.
Me: I’ve missed you too, every day. My daughter’s middle name is Rose, after you.
Aunt Rose: I know. Turn the car around dearest. There’s nothing but pain out there.
And this is the part where you want, with all your soul, to turn around. A lot of women do. Sometimes they make it up that hill 4 or 5 times before they finally find the courage to leave.
Me: I love you so much. I want to stay, I really do, but I don’t think I’m supposed too.
Aunt Rose: Why?
Me: I know it’s going to hurt, but I have to do it. I’m his mother. He never asked to be born, and he’s never going to get better if I keep pretending like this.
And with her soft, wrinkled hand my aunt brushed my cheek where a dimple appears when I smile. She called it my magic spot.
Aunt Rose: Elizabeth Rachel, if you leave here, understand that you can never come back.
Me: I know. Please, open the gate. If you love me the way I remember please open that gate before I change my mind.
She did.
When the gate opens you’re thrown into Shock. The landscape of Denial and the woman you loved slowly disappear. Absolutely certain you’ve made the biggest mistake of your life, you explode into pitiful tears and close your eyes, so you don’t have to see it happen. As you do, you hear the voice of Aunt Rose in your head: “I’m so proud of you dearest. That took courage. You did the right thing. That woman you saw at the gate wasn’t me, it was just your mind playing tricks on you, to protect you from what you’re experiencing right now. I wish I could lie and tell you everything is going to be OK, or that I know where you’re going but I can’t. All I know is that you did the right thing.”
And then I opened my eyes to look at my long lost Godmother, only she was gone and Kevin was standing there. His facial features were dysmorphic. I’d never noticed that before. He had braces on his legs and although he was 4, he was still wearing a diaper. This boy, who had been absolutely perfect a moment ago, was disabled, and I was shocked. He pointed to the car:
Kevin: Gonin?
Me: Yes buddy, we’re gonin
Kevin: Where gonin?
I looked back then, with some slim hope that Denial was still there but it was gone, along with the gate, and the woman I loved. I took Kevin’s hand and put him in his carseat.
Me: I’m not sure buddy. I think we’re headed to Blame. I’ll try my best to drive around it.
And then we were off, and as I drove an empty juice box hit me in the back of my head and Kevin shouted “Mail!”
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Hi Rachel,
I happened to come across your blog and read every single post while taking multiple screen shots until 3 a.m. We moved to Medford in Dec. and I have twin 6 year old boys who have been dx. global dvp delay, (fkg hate that too) autistic, fragile x?, and have a rare chromosomal deletion that apparently is so rare they are the 1st ones to have geneticist says maybe in 10 years others will be reported. Is there a way I could privately email you? They are starting kindergarten inclusion class in fall but I was hoping for info. on the behavioralist, theater info., sports info. etc. I cant tell you how much your blog spoke to me and how inspiring and REAL you are. Thank you, thank you, thank you!