I Will Not 'Keep Score' With My Child Who Has Special Needs

by Stacey Gagnon
Stacey Gagnon

I hung up the phone and looked at the numbers I had written on the yellow Post-it. I wasn’t sad, I was just numb. His IQ scores were very low, and yet I didn’t know how to process this. Part of me wanted to grieve, but another part was angry.

It wasn’t that I expected him to be a genius. It was the finality of a number — a boy’s future determined by a numerical scale. And what I wanted was a score that reflected resiliency and survival. I wanted a score that validated the worth of my boy. Instead, I looked at a score that equated to “moron” on Wikipedia. My boy is not a moron. He’s not slow or deficient. My son has climbed out of a very dark place and has worked daily to fight back the teeth of fear latched on his mind. He has been brave, overcoming something that would wreck most adults.

Keeping Score

Not many ask how he is doing anymore. He’s assimilated into our town and church, and on the outside, he looks “normal.” This makes me happy, but at the same time, I wish this were his reality. He is not completely healed or all better. He is just better at hiding it, and I dare say, the fractures aren’t as deep. He’s navigated a very scary and new world, and healing is a slow process.

When I worked in the ICU, I had a patient with a deep, infected wound. The interesting thing was that at the surface, the wound was healed over and looked pretty good. However, a visit from the wound care specialist revealed that the wound had tunneled deep — the patient required some serious interventions. I think it’s the same for my son Israel. His wounds are deep, and while he looks healed on the outside, we need to be careful to still appreciate the wound and treat it, even when we can’t see its depths from the outside.

The Body Keeps Score

It’s certainly not so obvious as it was when we first brought him home. Our silverware drawer has spoons now. For the first few months, he demanded to carry a spoon all day, and at night, he fell asleep with one clutched in his tiny fingers. It is now rare for him to sit with hands clasped in his lap rocking with eyes unseeing and teeth grinding. Good Lord, the teeth grinding almost put me over the edge. He has stopped crying out in fear when we leave home. His body has put on weight and his spine and hip bones are no longer threatening to escape skin.

It has been a year and a half of a very long journey, because what I didn’t understand in the beginning was that the real journey and work began the day we walked out of that institution and tried to assimilate him into a family. We naïvely walked up those steps thinking we had already finished the hard work, only to find ourselves hunkering down in the trenches of healing a post-orphanage child, a post-institutionalized boy with a heart and mind that did not understand how to live a day that lacked in total and complete structure. A little boy who had only known absolute structure and no stimulus.

And we took this little boy who had lived in solitude and loneliness and thrust him into a loud family. Loud days filled with sensory overload, like going to the grocery store or even outside the house. We quickly learned to carry headphones to block out the sounds of normal life, because when he had to hear the “normal” sounds, he would start crying or sobbing from fear. I didn’t understand that family can’t fix trauma and love doesn’t erase bad experiences. Instead, I soon realized the body keeps score and keeps a record of all the hurt and pain. And if they aren’t expressed, they are stored deep within the mind to fester like a wound.

Stacey Gagnon

I remember undressing him for the first time. I walked him into our hotel room in Eastern Europe, and I wanted to wash off the stink. The smell of an orphanage is so distinct and awful; it’s fear-laced sweat, urine, and neglect. I peeled off his clothes and tears stung my eyes. He was emaciated. I knew he was thin, but oh my God, he was hollow. The hollow places of his body screamed starvation and neglect. His hips, his collar bones…the hollows of his eyes. Hollows that were never filled and seemed to sink to the depths of his soul. And it all seemed more than I could imagine. And I looked him over, and his spine was bloody. Bloody because the skin on his back was so fragile, like 90-year-old skin, and it had torn from riding in a car seat. Yes, a car seat had stripped the flesh off his back.

But probably most disturbing was the lack of a single callous, scratch, or rub mark on his body. Other than his spine and the surgical scars, Israel’s skin was perfect. And this solidified that he had never left his crib. A boy who cannot walk and must pull himself across the floor, should have marks on his legs and hips and callouses on his hands. My heart sank, because in that moment, I understood that the psychological wounds of childhood trauma would be greater than the physical scars he bore. His neglect and deprivation could handicap him greater than the spina bifida, and I was scared.

Crash Course

The first time we fed him, he wouldn’t stop eating. And when we took away his food, he screamed in complete fear. We figured out that he needed unlimited access to food. He needed to know that food was within “his control,” so we gave him the control. We put pouches of applesauce on the floor because he could get to them himself. Because he had been on a purée liquid diet, we needed something that he didn’t have to chew.

Every time he would say, “Israel food?” we would point to his basket of applesauce packets and say, “Israel’s food.” We never denied him food, and he must have ate 40 packets the first two days. And slowly he began to realize that we would feed him, and he could tell us when he was hungry. A strange concept for a 5-year-old, when I’m hungry there is food to eat. When I’m thirsty, I can have a drink. Because in the orphanage, he did not have enough to eat and too much hydration made for wet diapers which equals extra work and cost.

He used to scream in animal-like rage when we put him in his crib. The first night in the hotel, it went on for hours. We didn’t know how to stop it, and we truly thought they would call the authorities because his scream was feral and horrible. And I wish I could take back our course of action. I thought that he needed to “learn” that bedtime was bedtime. It was the one area that he bucked my authority, and in my parenting mode, I was going to establish control.

One night when we had been home about two weeks, I went to lay him into his crib, and he looked at me with huge tears and it hit me: He was terrified of the crib. It was a cage for him, and I immediately put him in his big boy bed. His whole body relaxed into the mattress, and he grabbed the blanket, pulled it over his head, and went to sleep. I felt horrible. I had been hell-bent on teaching him boundaries and family rules. He was operating out of fear and need and had no ability to express it. We did not realize until that moment that the crib he slept in at the orphanage also served as his cage during the day. And here is where I started to learn to parent from his need, not my own expectations.

Winning the War

There are things I wish I had known when we brought him home. Things we did wrong, but also things we did right. I wish I had known that trauma cannot be fixed. The child who comes from hard places has an altered brain. I cannot fix an altered brain. I honestly thought I could erase prior trauma.

Instead, we have learned to parent in a very different way. We have learned that we cannot ignore or quickly move past his trauma. In order to heal, we must sit quietly in that dark place and grieve. It is about examining the losses and giving them a 5-year-old voice because we don’t want to be drowning in this darkness years down the road because we kept it silent and covered it up. So there are times when the day is quiet and he is tired and I will find him sobbing. And I sit and hold him in the light of day while he revisits the dark place, and I give voice to his fears. Because when trauma is stored in the body, it will fester like a wound if it is not expressed.

Raising a child like Israel, or any orphan traumatized by years in a cold orphanage or living in foster care, will make anyone redefine their definition of successful parenting. There is a paradigm shift that had to happen in my mind, and I had to admit that I was totally naïve and unprepared to handle Israel’s issues. Even after years of foster parenting and raising kids who had traumatic backgrounds, I was unprepared. His history was so extreme, and I stepped into it ready to use the tools I had used for years as a foster parent.

Stacey Gagnon

I have come to realize that this is okay because I am always learning. I am learning that every child comes with different hurts and traumas, and there is no one-size-fits-all trauma algorithm. For Israel, we are learning to define success in much smaller increments than with my other kids. A successful day for Israel does not revolve around learning a new letter, or how to write his name, or hold a pencil like most kindergartners. He needs reassurance, connection, peace, and time. I need reassurance, connection, peace, and time. He has taught me that to heal the wound, we have to uncover the ugly hurts, and truly this works both ways. I have my own hurts and traumas that affect my parenting, and a trauma kiddo will expose those in an instant.

The other night, I was sitting in the living room reading, and I heard him start crying and calling my name. “Mommy,” he cried. I went into his room and he cried for a glass of water. I gave him a drink and lay beside him until he went back to sleep. This moment was so big in his little world. When we first brought him home, he cried silently in the dark. I would hear his quiet sobs from the living room, and I wondered how many nights in the orphanage he cried silently, alone. It wasn’t until recently that he has started to call out. It wasn’t until recently that he realized that when he calls out from the dark place, he has a family who will come. A mommy and daddy who will fight the monsters with him. He has a family who will sit in the dark with him as the pain is expressed and eventually healed to be replaced by scars.

And so I looked back down at the Post-it note, and I shredded it. I shredded it because it will never show how far he has come. These scores will never count the spoons in my drawer or the nights that he cries out loud. No, the yellow Post-it went into the trash because my boy has a story, and it cannot be captured on an IQ test.