Thursday, September 22, 2011

The Family Book of Forgiveness - Introduction

I am not gifted with a great wealth of self-esteem, to begin with. So when my child went into crisis, I was not only breathless with terror and pain on his behalf, I was also shot through with humiliation; my worst fears had come true; I had failed as a parent.

At five years old, my son experienced a surge of unprecedented aggressive and unregulated behaviors. He had always been prickly, ‘slow to warm up,’ impulsive, but his gift for language and advanced concepts like metaphor and complex narrative, his fascination with science, deterred us entirely from ever considering that he might have developmental problems. A delayed child was a late speaker, no? Introverted? Physically weak or sickly? That was not my crashing, bashing, tanned, muscular, climbing, swimming, never-shutting-up… pacing… reactive… echolalic… obsessive… anxious… twitching… mistrustful…

…wait a minute…

Visits to a psychologist my husband and I trusted and conversations with our pediatrician yielded nothing. But by the third week of kindergarten, our son was running out of the school building into traffic screaming “Mommy!” or clawing his way through the principal’s face. It was time to get serious. A gamut of evaluations revealed Autism; more specifically, Asperger’s Syndrome. And OCD, and Anxiety, and Sensory Processing Disorder, and probably Tourette Syndrome. We were shocked. And we did not know what to do next.

So we blamed ourselves.


Isn’t that what we all do?

My own particular despair was case-building itself around the fact that I have a profoundly Autistic sister, my only sibling, twelve years older than me, who also has Turner’s Syndrome (and who later in her life has developed Schizophrenia); I had no business passing on this DNA. 

I had a nagging suspicion all my adult life that I carried unusual genes. I’ve struggled with depression and anxiety since I was a child, and have always felt like an outsider, maybe even to myself. When, in my early 30’s, my biological clock took over my every conscious and dreaming moment, I began to realize that I wanted a child more than I wanted to go on living without one, but I balked, for so many reasons; that poor self esteem, Autism and Turner’s in the family; I shouldn’t.

But I did. It was the most exciting time in my life, up to that point, being pregnant with my son; my husband and I were constantly giddy. I rejected genetic testing of any kind because I just didn’t want to know; what would I do? Terminate my son? Give him up?

It would have been pointless anyway, because as yet, there is no genetic test for Autism, or for any of the things my son has. And even if I could have known, the information would have served no purpose other than to torment me.

My son was gorgeous. He was perfect in every way except for tongue-tie; a symptom? I’ll never know. Once that got fixed we nursed our way uninterrupted, right through my pregnancy with my daughter, to fatness and cuteness and glowing good health. Everything was fine. I’d finally done something right. In some ways, I was even kind of good at it.

Till kindergarten.

After we learned that our son is Autistic, I had weeks where, yes… I wished I had not had him. Not because I didn’t love him; in fact I loved him more. But because I was sure that I had done him an unforgivable injustice; I’d passed him Autism. I’d drawn him what experience made me believe was the absolute worst card in the deck. And I couldn’t fix it. And I couldn’t help him. And I believed that we were doomed to repeat the stress and loss and shame of my own growing up, with my sister, and my parents, and their Sysephisian struggles. I had failed as a parent just by being one.

But, there’s no drop-out option, is there, like failing in college, then walking away and getting some small job to pay the rent. Of course, there are parents who tragically or mercifully leave, but luckily, sincerely so, I was not among them. My father recounted stories to me of fathers he knew when my sister was a child, fathers who couldn’t or wouldn’t love problem children enough to stay, and he spat on the ground as he spoke of them. In the swarming fears of my mind, I wanted to run away, too; from the uncertainty, the work ahead. My son had no school, now. He had no treatment. I’d quit my own school. My daughter began acting out and her teachers were calling. Everything felt out of control and I just wanted it all to stop.

It was information that would save me, and friends. One, who in this book I will call Holly (all the names and possibly sexes and ages of people represented here have been changed,) had been in the process of a similar experience with her daughter Kate, and she gave me the first contact I had for OT – occupational therapy – for my son, which was revelatory. I began my research there, and with Resources for Children With Special Needs, New York City’s only independent non-profit organization supporting families like mine. At Holly’s urging, I wrapped my head around that phrase, ‘special needs,’ and began digging like a badger, voraciously amassing literature, phone numbers, explanations, applications, and networking like crazy, calling this administrator to get that supervisor’s number to make an appointment with this therapist and follow up with a meeting with those teachers and touching base with this doctor to get this piece of paper that will verify my son being entitled to everything.

If you are this parent, you know exactly what I am talking about. The doing of it all was harrowing, but empowering. I had affect again. I was taking control. I couldn’t change my son, nor did I really want to, but suddenly, I could provide for him; the crashing sense of failure was mitigated. I worked aggressively with the Department of Education’s Committee for Special Education and the Central Base Support Team and found a perfect school for him. I watched as outside therapies we paid astonishing amounts of money for worked and made him more comfortable, capable, and connected. I found a babysitter, the Indomitable Angela, who walked into our apartment committed to loving and accepting my son, sight unseen, and who never wavered, and who continues to dote on both of my children, slathering them with a generosity of patience and spirit and humor that I’ve never actually witnessed in another human being.

Holly, and Linda and Amy, the other two special needs moms with whom I have formed lasting friendships and an invaluable support group, all said something to me that I did not believe, early on; It will get better. 

It did.

Yet something lurked, some phantom thing walked around in my head at night, keeping me awake despite my prismatic exhaustion; it wasn’t the failure, which abated with action, and my son’s improvement and small successes.

It was that I was sorry, and I couldn’t let it go.

For this wound, there seemed to be no salve outside myself. In books, I found a very broad and creative variety of practical techniques for coping with children who struggle with sensory challenges and Autism-related difficulties; in fact I was amazed at the accuracy with which I saw my own child described, time and again. The research and resources that went into these works was frankly incredible, but they didn’t reach back to me about myself, about how to cope with the me problem in this constellation.

I did find a sense of belonging within the pages of two wonderful anthologies by parents of special needs children; My Baby Rides the Short Bus edited by Jen Silverman, Yantra Bertelli, and Sarah Margaret, and Gravity Pulls You In, edited by Kyra Anderson and Vicki Forman. In these essays and anecdotes, I felt like I was shaking hands with parents forever riding the same train I was, trundling along at a rocking speed, shoveling the coal, feeding the fire, with barely a moment to notice the scenery as it snaps by, in search of that answer that burns somewhere in themselves, but remains yet unseen on the horizon; peace.

And that’s what this book is about; forgiveness; of our children, and of ourselves.

I get angry with my son almost every day. I don’t like the way he talks to me sometimes, whining or complaining bitterly when he’s unsatisfied with all that he has in life, his food, his toys, his choices, me. I don’t like it when he fights with his sister, because he’s bigger than she is, and does know better. And I don’t like it when he starts screeching like a howler monkey at homework time even though he knows damn well that the homework is getting done come hell or midnight. I love and give too much to be treated like that; but there it is. I want him to display control that he does not yet have, and may never; I would like him, in that way, to be different; and so I speak sharply back to him, I shout and break things, and then I want to slam my head on the wall because he learns these behaviors from me.

Neither he nor I am scheduled to become flawless, or even much better, any time soon. We are it. Now. And when things go well, I reward him effusively. I believe in the immediate affirmation of candy. I am fortunate in that my son’s most effective motivator is pretend play with me. These are things I have at my disposal; a dollar’s worth of chocolate, my time.

Forgiveness is less accessible. I don’t know where to get it. The place inside me, maybe the flesh vortex where my son first came into being, feels like a possible source. Maybe there’s a door in my heart that swings wide and liberates my son and me. I don’t know. But I feel something. When I truly see my son for who he is, and myself, and I forgive us, we feel free.

I want that peace for all the special needs children, and for all their parents.

I offer it here. And I hope it helps.


Nancy Johnson Horn said...

Wow.. I'm speechless and amazed. And grateful that you loved your child enough to make sure you found out what's up. There should be NO guilt.

Francine said...

Your voice expresses the pain of not being perfect that many parents deal with; but you also reveal an amazing amount of dedication, courage, and willingness to explore any and all untapped resources in the service of your family. Not a surprise to those who know you and admire you. Write on!

Susan Senator said...

Your writing is lovely and your message is very familiar. My guy is just about 22 and I still struggle with many of these same thoughts and emotions.

Debby said...

As I read what you have written I found myself being pulled in by the words and finding comfort in some of the similar feelings that I have experience. When you talked about how your son's behavior could be somewhat animalistic I actually smiled because I know exactly what that looks and feels like. We have equated those episodes with my daughter appearing almost "possessed" and were taken back by the extreme anger that such a little girl could exhibit. When these behaviors were witnessed by friends and family I often received negative feedback as to how I was parenting my child. I didn't follow up these difficulties punitively but with a great deal of sympathy for my daughter and how she appeared to be so tortured with herself and her behavior (sometimes she didn't even recall what she did). I just didn't feel like I had to punish someone that was already so disappointed with themself. So, to others I am sure I did appear as a bad parent.

I guess the hardest part for me is when things are going well and then something happens to remind us that she is on the spectrum. I see so many families that are able to do such basic things as go out of town, couples that can go out and get a sitter, go out to eat and yet these are events that can cause such a disturbance that it is not worth taking the risk. My family will not watch my daughter because they are afraid of her and what may happen. My daughter does not like having other people watch her because she cannot stand the word babysit and she fears what may happen if she does something wrong and that the person will judge her or make her feel even worse about who she is. Sometimes I feel guilty because I am frustrated that I cannot do anything without having to think about what I need to do to prepare her for what is happening and what may go wrong. When things do go wrong I feel that I have failed to provide the necessary safe guards to ensure that things are perfect and to avoid the negative comments that come with it. I cannot count how many times I have been told that I need to teach my daughter manners. She is such a polite child but when she is uncomfortable she has not filter and will say things like "When are these people leaving our house?"
I think the most frustrating comment I have heard from others is "Who is the parent?". They think that it is just a matter of "laying down the law" and letting her know who runs the show.

Anyway, I feel like I could write and write about how having a child with Autism has changed our lives and in so many ways it has been enlightening and amazing as to how she has made us view the world in a way we never would have without her. Maybe I need to take this opportunity to share my story. Thank you for your words and for reaching out with your story. I cannot tell you how just reading what you have written has affected me.

EnjoyHi5!Autism said...

speechless...; in awe...; touched.
Will submit a reflective piece. Thanks Minks/Sweet Animal for caring. 'EnjoyHi5Autism' will share your TRUTH.