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  • Writer's pictureMary Balistreri

When Your Child Has A Disability

Writing these Grief Notes and sharing them with whoever might read them proves to be the best medicine possible for me. It allows me a smidge of control over my grieving process by dedicating time every week to my own grief. As a mother and the primary breadwinner for most of my life (until right now), time was the commodity that eluded me the most. It's been nearly seven months since my sister, Ann, passed away, and I still experience grief that I cannot control, sadness and lethargy that overtakes me unexpectedly.

The blog is my best tool toward moving forward productively - by looking back. Halfway through this blog project, I understood that I could not move forward until I wrote about the greatest sources of never-ending loss for me - never being able to physically have a baby , and having a child with a disability.

Here I go with the second of those two prolonged, grief-inducing situations. Buckle in. Protect your heart for these stories are difficult to write and may be difficult to read.

Painful Memory

Christmas was nearing and in the midst of all the fun and preparations, my son was miserable. And, so was I. The source? The school holiday program. The teacher refused to let Owen stand on his knees (which is how he stands) on the risers, saying it was a hazard for kids who might trip on his legs and feet that extend behind him in that position. She also expected him to be part of a dance the kids were doing for which she had paired him with the tallest girl in the class. He found it particularly embarrassing, because he looked shorter than usual on his knees next to this girl, and had to swing his arms around from the shoulder (he has almost no muscle in his arms) in order to mimic the arm motions of the other kids.

I called the teacher who was, I will say it, simply mean to me. There would be no middle ground. Either he did the program as she had written it, or he could not participate. I thought it best for him to endure the program - one of the many decisions I question during those middle-of-the-night sleepless. anxiety-ridden episodes that wake me from a deep sleep and keep my mind busy until morning. I tried to lighten things up at home and help him prepare for it mentally. It is just one part of the holiday. Which songs did he like? That kind of stuff. He continued to be apprehensive.

As I sat through the program, I barely contained my anger, indignation, and sadness for my child. He looked miserable. I saw all of the parents around me joyfully making videos of the event while it unfolded. I wanted to yell, "No. Stop! Don't you see how unhappy Owen is? When you take your video home and watch it again, then will you see how sad and miserable he is?" I did not yell. I held my breath until it was over and remained silent. There was no way to spin this into something less than tragic for him.

In the car and once we were home, Owen spat out his rage at the situation. He did not cry. I think he was seven or eight years old. He was appropriately angry. And, he was angry at me. "Mom, why did you make me participate in that! It was horrible! I looked like a moron!" Maybe he was right. I should have kept him home or taken him someplace where he could have fun. I knew he hated being in font of everyone in his wheelchair. That's why he wanted to stand in a back row on the risers. That way people would not see his chair, would not notice that his hands and arms can't make the motions the other kids were making, and he would not feel like a moron. And then there was the exposure of having to participate in that dance...

I took his anger. I was angry, too. I simply said, "I am so sorry, honey." Once Owen and my husband, Steve, were asleep that night, I did something I seldom do. I poured myself a big glass of gin on ice and wanted to drink away the pain and the grief. As a co-dependent person, I have seen the damage drinking can do, so I always question my reason for drinking and abstain if it is in response to a strong emotion. On this night, I let myself go. And, I posted my frustration on Facebook. Something I also never do.

The next morning, I looked at the post and greatly adjusted it removing the anger and rant-like prose. Instead, I merely mentioned how disappointed I was in the program and how I wished Owen had been able to participate differently.

The responses to the post surprised me. Most were supportive of us, something I seldom experienced from our community. I found out that many of the parents were frustrated with the music teacher. Apparently, the same holiday show was performed every year for more than 20 years, and she refused to consider any changes. Even, as Owen experienced, for kids with disabilities.

So Much Fear of Getting Real

That short description of my painful experience was so hard for me to write. In fact, this blog about Owen's disability is the scariest one for me to write. Why is it so hard? What holds me back? Fear. Fear of letting it out and not being able to put it back away to that part of me responsible for holding my emotions tightly in check so I can function and get stuff done. Fear of insulting someone by writing about a thing they said to me. Fear of being viewed as a cry baby or martyr. The biggest fear - fear of hurting Owen, or my husband, or Valery, my beautiful strong, wise girl. Valery is Owen's birth mother.

This week, I feel compelled to get it done. This blog post is for anyone who cared or cares for a child with a disability. Owen's disability, Arthrogryposis Multiplex Congenita (AMC), is physical. Our experiences may be different from yours, but after talking with many parents of children with cognitive and brain differences, I think some truths shine through.

Saying it in a sentence (or two), being a parent to a child with a disability brings the lowest lows and the highest highs - sometimes both at the same time. It absolutely SUCKS! and it is absolutely GLORIOUS.

Starting at the Start

I was raised Catholic. I remember vividly being questioned by the priest in second grade, "Would you be as brave as the Virgin Mary? If the angel Gabriel came to you, would you have the strength to do what Mary did?" As a child, I was terrified to open my eyes in the dark at night for fear the angel would appear to me and ask me to do something I was not strong enough to do. Seriously. Because my name was Mary, I almost expected it - while I was just a child, an angel would ask me to do something gigantic for God. In school, we also learned stories about how the Virgin Mary herself appeared to people. What if She came to visit me? For many years, I kept my eyes closed in bed until it was morning and everyone in the house was awake.

As I grew older and started what is now called middle school (I was at a Catholic school that taught kids through eighth grade), I lost the fear of a divine visit. I decided I would welcome it. My search for some Big purpose in my life started then. There must be a reason I am on this Earth. Someday, a Big reveal would occur, and I would know what path to take. I waited. "I'm here God," I would say in my mind. "I'm ready to do this great big thing, whatever it is." I waited and waited.

When I reached my 30's, I felt lost and aimless. Maybe I had no Big purpose in life. I was extremely sad about this. Then I met my fabulous husband and pushed forward. Until, along came Owen, my niece's baby. The baby she asked my husband and me to adopt.

  • Yes, we knew he would be disabled before we adopted him. (People always ask us that).

  • Yes, he has always known that Valery is his birth mom.

  • Yes, you can speak directly to him when you ask him a question. He's not deaf or cognitively impaired. (Even though we tell people that, the majority of the world will direct questions to me or his dad if we are with him. It makes Owen very frustrated.)

  • No, I am not ashamed of myself for taking on someone else's burden. (You would not believe the number of people who tell me I should be ashamed of myself for adopting Owen). First of all, he is not a burden. He is a glorious gift from God. Yes, from God! Secondly, God shown the light to me, and the path led to being Owen's mom. Just look at that face! He's an angel from Heaven! And, finally, mind your own business.

The Middle

In the early days, we understood our lives were different from other parents. That was okay with Steve and me. We welcomed it. We both felt different, like fringe people, our entire lives. It made sense to us that we would have a son who was also notably different. He did things differently, and he was brilliant.

  • Rather than the patter of little feet, we experienced the pounding of little knees - Owen's preferred method of getting around. He started knee-walking when he was four years old.

  • Owen never crawled. His arms could not do that. So, he rolled around the house. Steve, who was the stay-at-home-parent, would feel a bump against his legs. Looking down, he would see the giggling face of his son who was laughing at the great power he had to surprise his dad.

  • He sat on, not at, the table for family dinners and when we ate out at restaurants. Most patrons tried not to gawk at us. Some people openly stared. Some restaurant owners ordered us to put Owen in a highchair (a position that prevented him from feeding himself), and some acknowledged our situation. Some just ignored us and let us feel normal. Big shout out to Denny's - our favorite place to go at 4 in the morning when Owen refused to sleep. We had a favorite waitress too - Susan. Thank you, Susan, for being so wonderful to us.

We made friends, too. In one situation, a group of old men who saw us at McDonald's in the morning (I believe they met there every morning. We popped in once per month), introduced themselves. They loved Owen. From that moment on, they stopped to talk to him each time. They marveled at his large vocabulary, and enjoyed talking with him about cars and trucks. They even bought him presents on occasion. One old guy gave Owen a dollar bill every time they saw him. They were Owen's unofficial grandpas, and even posed for a picture with us. These guys healed some of the hurt we felt at the rejection we often encountered when we left the house.

  • Owen loved to cook, and sat on the sink to help me make soup and spaghetti sauce.

  • My wild boy did not (and still does not) wear shoes or socks. His right foot won't fit in a shoe because it is formed like a permanent fist. He uses it to punch open doors. His left foot uncurls, and he uses it like a hand. So, he needs to have those toe-fingers free at all times to help him with the three finger-fingers on his right hand that work. The fingers on his left hand do not move.

The list of how we were so different as a family continued to grow to such a length that I stopped writing it down. I simultaneously felt pride and happiness about how incredibly smart creative, and able Owen was and intense sadness about how his difference affected him. The older he grew, the lonelier he became.

It is one thing to experience your child's differences when he is a baby or toddler, quite another to join with the rest of society and endure the reactions. People, grown ups and children, said so many things that are hurtful. With children, we understand that they need to learn how to react, how to be inclusive, how to be kind, and how to express their emotions.

I have pondered and thought and puzzled until my puzzler was sore over the reasons adults say the terrible things they say when faced with a disabled child. The reasons are probably numerous and individual to the person saying the thing. Below are some examples. Most of these things were said to me when Owen was a child. If I listed it here, it is because it was a message I heard multiple times. No one-offs here, unfortunately. All of these comments were made by angry people, hence the exclamation points. You may have noticed how much I love exclamation points. Sometimes, it's the only way to do justice to the things people think and say.

  • If you don't want people to stare at him, you should not take him out of the house like that!

  • Owen ruined the entire grade school experience for everyone in his class! I hope you are happy with that! Because of him, the kids only took half the field trips they would have taken.

  • If your son is bullied at school, he needs to just handle it like my son did! My son told me about it, and then he stood up to the kids, and now everything is fine. (Her kid was not disabled.)

  • Really, the reason we told our daughter (or son or kids or whatever) she could no longer be Owen's friend has nothing to do with his being disabled. I just wanted to call and tell you that. I would hate for you to think it was about his disability!

  • Well, at least he has always been this way. You know. It would be so much harder if he had been born normal and became disabled later! That must give you comfort.

  • What are your plans for him? Have you found a group home to put him in when he gets older?

  • You knew he was disabled when you adopted him, so just deal with it! You chose this path.

  • People like you who have disabled children are always picking our pockets! What do you mean you don't get money from the government? Didn't the government and people like me who work for a living pay for that fancy wheelchair van? (Mythbuster: the government doesn't pay for the wheelchair van or the majority of the items needed to help a parent raise a child with a disability. Like most things in life, the better your insurance, the better your opportunity to be treated well and receive the items that are medically necessary for you to thrive.)

Lately, my pondering has led me to believe that people say these things because:

  1. Fear. They do not understand and are afraid of things, and people, that are different.

  2. Ignorance. They simply do not know how to behave as adults, because they have no exposure to people with disabilities.

  3. Selfishness. They don't want to share their lives with things and people that are different from them. This is the group who believes disabled people should be hidden somewhere away from society.

Often though, the worst things people say are what they do not say. All the parties that kids at school talked about attending, and Owen was seldom invited. All of the mom things that I was not invited to attend. We were definitely outsiders at school with the exception of a few families who found ways to include us. Then, sadly, those families moved away and left the community.

The biggest realization of the unspoken came directly from Owen.

Bedtime was a favorite time for us. As the working parent in the house, bedtime presented the best time for Owen and I to talk privately, snuggle when he was little, be silly, and enjoy each other. One night when he was four, he told me that all the kids in school (half-day preschool) were making fun of him.

"That's terrible, Owen," I said. "I will call the teacher tomorrow. Do you know the names of the kids that were making fun of you?"

"Everyone, mom!" he said.

"Everyone?! Owen, that teacher needs to talk to those kids."

"Don't call the teacher, mom," he said.

"Why not?"

"They don't actually say anything to make fun of me. Mom, all they have to do is stand up and walk around," he said. Arrows hit my heart. I cried that night and many other times remembering this moment. I was glad that he told me how he felt. As his mom, I wanted to make everything okay. Yet, here is one thing, among many, I could not fix.

It was the same for me. There were people who said terrible things to me as outlined above. Yet, somehow, the most hurtful things were simple conversations that parents have. No one to blame - just people talking about their lives. Someone's son was playing in a soccer league. This one's daughter loved playing the violin or piano or whatever. A friend's child was helping stuff boxes for an area Thanksgiving food drive. All of these things to me were the equivalent of someone standing up in front of Owen. They are innocent phrases about normal things parents talk about or brag about, and all things my kid can't do. I was happy for my friends and their kids while feeling and not voicing the hurt and injustice of Owen's life - and my life by extension.

The loneliness. He was lonely. I was lonely. I felt grief for him and for myself, but there was always so much to do. I had no time for grief and loneliness. There was work and home and husband and family and life. So, I let myself feel it when I had some time. I put on the best face for Owen when I was sad, and mirrored his emotions to help him know they were ok. It seemed we talked about everything, and yet, I knew he withheld things he felt, because he did not want to hurt me, just as I withheld to not hurt him.

Valery and I did much the same. We agreed at some point - I'm not sure if we said it out loud or both felt it in silent agreement - that we would each work on our own stuff (sadness, anger, grief) about our situation on our own. This way, we could give our best selves to Owen and not overwhelm each other. We shared a great understanding of Owen. Valery became a support person and sounding board for me. We talked about him and what was best for him, but not about our own often complicated feelings.

Did we spoil him?

Another comment I got from people was, "You are just spoiling him rotten!" Maybe. In my mind there is no actual connection between not being able to walk so my mom bought me a bunch of video games. We knew it did not compensate for the disability thing, but video games offered him something he could excel at doing.

Very few people were around us during the days when we tried to help Owen learn to walk. He had a mobility device called a gaitor (pictured below). He quickly outgrew the gaitor. It is not the kind of device meant for older kids or adults. It's meant to be a transition because it helps the child develop the motion of walking.

We were encouraged to help him walk by his surgeon. Braces on his legs, he was expected to balance on the toe of the fist-shaped foot on the leg that did not unbend and take steps onto the straight leg and foot. We set up a makeshift physical therapy center in our living room with parallel bars we built for Owen to hang onto for balance. Remember, Owen has no strength or muscle in his arms. How was this supposed to work? I don't know. He did make an all-time high of 24 steps.

I felt terrible during this time. What was the right thing to do? The surgeon who fixed his clubbed feet encouraged us to keep trying. "Someday, he'll figure it out," he said. Owen's pediatrician said he could not walk unless the doctor operated on his knee that would not unbend. The surgeon said the knee could not be adjusted. The whole time, I had been promising Owen we would take him to Disney World when he was walking. I ordered him trophies for his valiant efforts in learning to walk. Disney World? At five, Owen still had no understanding of what Disney World was, but he knew it was a prize. Something he could win, and Owen is very competitive. So, he kept trying to walk.

Finally, his PT asked us, "What are you trying to accomplish with all this walking business?"

I gasped in indignation, "What do you mean? We are helping him learn to walk!"

"He won't ever walk on his feet," the PT said. "Why don't you concentrate on all of the great stuff he can do instead?" It was one of the kindest, wisest things anyone ever said to us.

So, when Owen was six years old, we

took him to Disney World in his first wheel chair. He received the chair the day before trip. Did we spoil him? I do not know of any person who works harder than Owen. I think he deserved every hug, gift, and trip he ever received.

Stubbornness and Independence

My son, like most of my family, is strong-willed. I see the same stubborn streak in him that I see in myself, and his birth-mom, and my sister (his grandmother), and my mom (his great-grandmother). Every time his "number changed" (as he referred to his birthdays), Owen strove to the next level of overcoming obstacles. He seemed especially focused on doing things no one expected him to be able to do.

Teary, happy / sad moments came from his insistence to do everything others do with no accommodations to make it easier. As his mom I was often terrified that he would hurt himself and, then, filled with pride when he accomplished the tasks he set for himself.

  • Like when he passed his swimming test at the neighborhood pool on July 4, and the lifeguard gave him the password "Independence."

  • Or when he astounded everyone by shooting a bow.

  • Such as, when he started building things and working with tools.

  • When he insisted on helping me paint his room, and, it turned out, he was better at it than I was.

  • And, when he passed his driver's test and stood proudly in line (on his knees) to have his picture taken for his new license.

The boy is much more abled than disabled.

Now, Owen is a young adult living in his own apartment. Do I continue to feel the grief? Yes and no. He is in charge of his life now. His latest struggle, finding a job. I pray and pray that someone will understand his great intellect and his abilities and give him that first break. I know that the person who takes that chance will be greatly rewarded by having Owen as a member of their staff.

I am the same as most parents who are only as happy as our saddest child. This grief over having a child with a disability did not disappear when my hormones turned off, but it is more manageable these days. He is making his own life, just like Steve and I hoped. He decides who to spend his time with and who to avoid. The pressure of fitting in at school is gone. For us, things continue to get better.

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