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One Mom and the Decision of a Lifetime

This is a guest blog post from Cathy Linn, who shares her personal story about the heart-wrenching decision she had to make about her daughter's care.

Ten years ago, I drove my daughter to a therapeutic boarding school and she hasn't lived with me since. It was an awful, painful decision, one I resisted for as long as I could. I wrestled with all the fears of what could happen to her. Who would comfort her when she was sad, sick, or scared? The selfish part of me worried about the criticism, the judgements, the opinions.  What would people say?  The better part of me knew it was what she truly needed. And so I brought her. She was eleven years old.

She was my first child and her arrival was a new chapter in my well contained Westchester life. I was rigid and disciplined throughout my pregnancy. I planned endlessly, needing everything to be just right. I took her name from the sister of a college friend. It had a well bred ring to it, a name for a girl who might play tennis. She had wispy, white blonde hair my mother likened to whipped mayonnaise.  I was enchanted.  

I saw her through dreamlike eyes, ones that shielded me from what was increasingly apparent to others.  I shrugged off missed milestones. When friends mentioned her mouth hanging open, I automatically, defensively, cupped my hand to her chin. 

At age two, it was suggested I check her hearing.  I was stunned when the test revealed she had significant hearing loss.  I awakened to reality with a harsh slap, and we tumbled into the world of early intervention. 

Back then testing in our area was only available in New York City.  I spent long, lonely days sitting in hospital hallways, anxiously waiting, as my girl withstood a battery of tests. The last one was genetics.  It revealed a deletion in one of her chromosomes, a condition so rare it had no name.

I was told it would likely impact her physically, neurologically, emotionally and educationally. It affected every cell in her body, so there was no cure, no fixing it.  I listened politely, but secretly wanted to close my eyes, cover my ears and scream.  I envisioned a  lifetime of hardship and struggle. I felt trapped and panicky. I didn't smoke, but in that moment I longed for a cigarette. 

Our family and the life I imagined abruptly turned upside down. There were resentments and blame. I was mad at…everything. I had been so careful! It didn't seem fair. Looking toward the future was unthinkable, the responsibility overwhelming. Any marriage might buckle from the enormity of it all. Mine broke.

Despite my efforts to push it away, the anger lingered. It simply changed form. I put myself through punishing workouts, judged parents with typical children, muttered alone in the garage. I was easily aggravated when I thought no one was looking. 

I never allowed myself to feel disappointed. Except sometimes I was. I kept that fact buried so deep inside, even I couldn't touch it.  It was too shameful. I was afraid admitting it would mean I must be a bad mother. A bad person.

To the outside world, I put on a smiling face, making sure it appeared as if none of it bothered me at all. It was my armor, self preservation. My pride would not permit otherwise. I vowed not to complain, never to show any strain at all.  The effort to maintain that picture was wearing. During that time, I drank more than I should have.

I had moved to nearby Connecticut, where I had grown up. My family no longer lived there, but having roots in the area felt safe, familiar. I enrolled her in the local elementary school.  I learned to speak the language of special education; PPTs, IEPs, occupational therapy, sensory integration.  It turned out she was an above average reader and had a wicked sense of humor. The teachers adored her, but the children shied away.

In the early years an occasional classmate came over to play. I  went overboard, frantically trying to please, hoping to win them over. There were homemade brownies, puppet shows, kittens. Anything. As time passed, her differences became more obvious. The playdates fell away. She was alone a lot.

My daughter was acutely aware of her challenges. She was frustrated by her unsteady gait and physical limitations. Her muscles were weak and her body often betrayed her. Her hands flapped when she was excited, her breathing noisy. People would stare at her, some merely curious, but a few were unkind. As I lay in bed at night, I would be seething. In my mind I would confront them, put them in their place, but in real life I stayed silent, heartbroken.

She began having bouts of rage that neither one of us could control. If she perceived she was being marginalized, she resented it. She acted out.  After each episode she suffered tremendous remorse and her self esteem plummeted. The school frequently sent her home. I was constantly apologizing. The instances piled up. My nerves were on edge, my body braced, awaiting the next outburst.

I remarried a few years earlier and she had younger siblings. Our house became increasingly chaotic and dangerous. I was desperate, depleted. We were on the verge of a catastrophe and I felt irresponsible knowing, yet let it continue. I hesitated taking that next step.  After a dresser drawer went through a window, she spent time in a psychiatric hospital.

She stabilized and came home. Everything would be steady for awhile. Eventually the tantrums returned, each time longer and stronger and she went back there. It was hard to miss that she actually improved in that highly structured and supervised setting.  

A doctor there recommended a therapeutic school north of Philadelphia, not far from where my sister lived. I dismissed the idea of it initially, but the truth was, I was out of options. Even though it wasn't what I wanted, what every part of me fought against, I convinced myself to at least give it a try. 

The two of us tried to stay upbeat as we drove down I-95, singing along to the radio together. We arrived and dropped her bags at the residential hall. I nodded and smiled as the routines were explained, but none of it was sticking. My mind was buzzing. I had to remind myself to keep breathing.

Unexpectedly, inexplicably, my sister appeared. I was her younger sister and she had spent much of our childhood trying to get me out of trouble. Although there was no way she could fix it for me now, she did hold my hand, walking next to me as I went through it and it helped. 

We went to her classroom. My daughter settled in and it was time for me to leave. I saw her trembling slightly, her eyes wide and searching.  She was being so brave. With a quick glance back, I did the impossible. I turned and left the building.

As my sister and I walked off the campus, she was crying, but I wasn't. Walking out that door had been brutal, but I refused to fall apart. My sister held my shoulders, asking over and over again if I was alright. I assured her I was. I didn't want to talk. I had the sudden urge to get away from there. I wanted to drive away, fast, to shake off any threat of tears.  

About twenty minutes down the road, I felt my throat tighten. I pulled to a rest stop and choked out loud, ugly sobs. The sound was low and unfamiliar and it startled me, even as I was powerless to contain it. It was like that for a long time. No matter how hard I had tried, it seemed somehow I had come up short.  I had tricked myself into believing this was just a trial run. I understood that this was really it, I had to let go.

At home I had no choice but to carry on. Though now there was no way to avoid the grief.  It was too big. I had always been so afraid to honestly cry for fear I would never stop. I was sure it would swallow me up. I had filled my days trying to ignore it, believing I couldn't afford the risk of unraveling.  Gradually I allowed the sadness to come to the surface, to mourn openly, to let others see the wound. The vulnerability was almost unbearable, but that was what got me through it.

The next time I came down to visit her, the weather was warm and she was sitting under a tree with a group of friends. In the seven years she spent there, I spent many hours traveling back and forth. I watched her world open up.  She still struggled with some aggression, but the staff was trained  to handle it.   She performed in plays, wrote poetry, made lasting friendships. She had a boyfriend. I got to see her go to the prom.

Over time, her needs changed and she was placed in a different school. One in my home state, but nevertheless far away from me. At her graduation, I sat between my current and ex-husband. We high-fived, hugged one another, took pictures as a family.  Our divorce had not been easy, but it turned out we had been on the same side all along.  

My daughter remains there in a transition program. She volunteers at the local animal shelter and I keep advocating on her behalf. We celebrate her hard won victories and I find peace in knowing she is safe. Sometimes the sorrow will sneak up and tap me on the shoulder, reminding me that it is still there, making me remember how much I miss that girl.  

I've come to accept that our time together consists mostly of limited overnights and phone calls. We speak to each other almost daily. I've learned how to FaceTime. We usually just talk about the ordinary. We laugh a lot. I hear about mall visits, a movie she's seen or what she is reading. She asks about what I'm cooking, how her brothers are, what the dog has been up to. But underneath the talk of dinner and dogs, there is a deeper message, one from my heart, that reaches out across the distance between us and gently whispers…I am right here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.