My screeching phone startled me, and I sat up in my chair on our front porch. It was an emergency alert. It was warning us of a tornado. But what if you were pregnant and it had said, “Warning: special needs child coming!”
Five of us were sitting in our screened in porch. Vance, me, my son Eythan, his wife Jazmin and a family friend Nathan. Eythan and I both received the alert on our phones, but the other three did not.
“Vance we have to get Kyle into the basement,” I said to my husband.
“No, it’s just a warning we can wait until it looks worse,” he said.
I’m not sure what part of taking cover he didn’t understand. But I would rather obey the warning and later laugh it off, than be hanging by my hair, with a cow in a tree.
I couldn’t convince him to get Kyle in the basement. It takes a lot to coax our son Kyle, who has autism, to come or go somewhere. Sometimes hours to transition him from one area of the house to another.
“How are you going to get him in the basement if you have one minutes notice?”
“I will pick him up and carry him.”
I still didn’t see the logic. Even though Vance is a large man with big muscles, Kyle will fight Vance tooth and nail if he doesn’t want to do something. Either Vance or Kyle would be hurt by the time they were in the basement.
I ran upstairs and warned Ariane, (Kyle’s staff) that we might be coming to get Kyle and take him in the basement. I explained to Kyle what we might have to do so he could think about it for a few minutes.
I didn’t care about my own safety. My sole focus was Kyle and how we were going to keep him safe and sheltered until a tornado passed over.
Eventually, we learned on the news that the warning was lifted. But Environment Canada never sent us a second text telling us the alert was over. Vance is a good father, he’s just a hopeless optimist who hardly ever believes that danger is near. He is very protective of Kyle and sacrifices many areas of his life for him.
I gave birth to Kyle twenty-eight years ago. The moment they laid him in my arms, a fierce mother bear that had entered my life at age ten, took over my body.
I was explaining to my daughter Charity, who is expecting our first grandchild in December, how a new mom’s brain works.
No one in this world whether they are a brain surgeon, Mother Theresa, a pediatric nurse, or mother of ten children knows how to look after your baby…no one. You are thrown into a world of just mom and baby, and you don’t really let anyone else in.
If you are a mom, I know you understand where I am coming from.
I remember a nurse who visited our home after I had Kyle telling me, “You and your husband were a family first before the baby came along. Don’t let the baby take over your life.”
I looked at her dumbfounded, what did she know…obviously nothing. It was ALL about the baby. What we didn’t know at the time was, Kyle had autism. Whether we chose to make him the center of the universe or not, was not going to be a choice. Our world would become ALL about the baby.
Warning: Special Needs Child Coming.
Years passed and as Kyle got older and his brain kept having seizures due to epilepsy, he lost more and more of his ability to function normally.
Well-meaning friends, family, and doctors suggested we institutionalize him. Remeber the mother bear? She never made an exit. She stayed with me for twenty-eight years. Putting Kyle permanently into the hands of people who didn’t love him was never an option, as long as I had two walking feet and two arms that worked he would live at home. Vance felt the same. All our children were valued the same, including Kyle.
We were judged harshly at times for not putting Kyle in a group home.
People looked at our other four kids, who were younger than Kyle and thought they were suffering due to Kyle’s behaviours. How could the Henson’s put their children through such chaos?
But I always found it interesting that no one thought it would devastate Kyle if we put him away. If one of our other children had all of a sudden become just like Kyle, they knew where they would live, at home with Mom and Dad. Somehow our kids had observed and in their minds, they saw parents who would never give up on them, no matter what level their bodies or brain functioned at.
I realize some families have no choice and they end up at this option eventually, and it is devastating to them to give their child up so they can get better care.
My heart goes out to you. I know this isn’t what you wanted to do.
Recently in different countries, they are bragging about bringing down the Down syndrome rates. But really their stats haven’t gone down, their abortion rates have gone up. (Please: sign the petition to stop eliminating babies with Downs syndrome)
Charity and I were driving a few months ago in my car, and she was talking about her baby when she said, “If I had a baby with Down syndrome I wouldn’t mind, they are the sweetest people in the world.”
My heart swelled with pride for my daughter. She got it. Charity wasn’t having a baby so she could use it as a trophy to show off how smart, brilliant, athletic, or beautiful it was. She was having a baby to love…no matter what.
I told her that Vance and I agreed with her and we would be just as delighted to have a grandchild with Down syndrome as we would be to have one without it.
When I was pregnant with my fifth child, Eythan, the doctor said he was ordering the test for Down syndrome. I asked him why? “So you can abort it if the test is positive.” I was completely offended. Why did he think my child had no value if they had special needs?
“There’s no need to do a test. If my baby is born with Down syndrome that is fine with me.” He stared at me dumbfounded, and then a look of disgust came over his face. He shook his head and left the room.
Imagine how my son Eythan feels knowing I wanted him…no matter what.
I don’t say any of this to try to make myself out to be a hero. I’m not. I’m just a girl who had an uncle with autism. One I loved very much. I saw his value. He taught me that family is family no matter what the packaging looks like. At the end of his life, he sat in a wheelchair drooling on his bib, smiling at us.
That was the day the mother bear entered my heart and never left. I was only ten.
I think about the Tornado warning and how the world has all sorts of ways to warn you of the impending doom of having a special needs child. But they fail to tell you how a child can bless you even if they are not perfect.
Kyle wants to be loved for who he is, not for what he can do for the world.
My son wants to be valued and accepted as though he has discovered the cure to a deadly disease or figure out how the pyramids were made.
For humans to have become God and decide “Yes or No” for each child based on their abilities has gone too far. Imagine if the children who would bring the most compassion, acceptance, laughter and joy have been removed from our world? Imagine if all we had left were brilliant, athletic, beautiful people without heart?
God is quite capable of deciding who is birthed and how to meet their needs. We don’t need to put those decisions into the hands of people who sit at desks in suits.
I’ve learned so much in twenty-nine years of being a mom to a special needs baby who became a young man. He taught me to love unconditionally, to smile on my hardest days, accept people for who they are, and love God no matter what life brings.
Kyle will never win the Nobel Peace Prize, he’ll never cross a finish line, and he’ll never hold a trophy. But when he gets to heaven God will open his arms and Kyle will walk into them and become completely free of autism and God will say to him:
“Well done my good and faithful servant.”
Some of us were born to suffer and bring God glory through our trials and tribulations, and some of us were birthed to love these people and carry them through this challenging life.
If you want to read our story and God’s faithfulness to us, during our journey with autism click here to check out my book: Beauty from Ashes
I have been honoured to be a carrier of a special human being from conception until today. A day has not gone by where I didn’t need God to help me carry this special young man. I am a better person for doing so.
Kylee calls me Mom and I am blessed and honoured to call him my son.
