The Kevin Chronicles: Aidan

I went back to school in 2005 to get my degree in special education. One of the courses I took required us to invite someone with a special needs family member to share their experiences with the class. Coincidentally Kevin was only 6 months old at the time and I had no idea he was disabled: I just thought he was a demon infant sent from the depths of hell to destroy me. Anyhoo, one of the ladies who came in was a beautiful, 25 year old girl whose brother Edward had autism. I can still remember being absolutely riveted by the story of her upbringing: all the functions her parents missed because only certain people could babysit Edward, the many nights she was woken up 2 or 3 times by him tearing around the house, the embarrassment, the inability to have friends over for fear he might attack them, and the exhaustion that had aged her parents far beyond their years. She wasn’t complaining, she was just telling the truth. To close, she asked us to remember the families of our students and how hard it is to raise a special needs child. “You have them 6 hours a day, 5 days a week, for one year,” she said. “We have them forever.” Now it was our turn to ask questions. The only question I remember was my own: “Who will take care of Edward when your parents are gone?” I asked. She addressed me quizzically. “Me,” she replied. And because I’m me, and I have no filter, and I just HAD to know I asked, “Is that what YOU want?” And with a hint of sorrow in her expression she replied, “It’s what’s expected of me.”

Fast forward 5 years and we were going through the most painful year we ever had with Kevin. He was physically aggressive at home and school and could not fall asleep unless I was in bed with him. Because his room is directly above theirs, I was able to hear all the conversations between my two daughters. One of them changed my perspective on life. But before I tell you about it, you need to know about Kayla and Aidan.

I know this is going to sound like bragging and I apologize but.....Kevin’s twin sister Kayla is adorable. Her hair is the color of rose petals and littered with corkscrew curls that bounce when she walks. She has full lips, a 1,000 watt smile and loves to dig in the dirt. Therefore, for as long as I can remember, little boys have been smitten with her. One day, at preschool drop-off, an equally adorable little boy tapped me on my thigh:

Adorable little boy: “Excuse me. Are you her mother?” pointing at Kayla

Me: “I am. Who are you?”

Adorable little boy: “I’m Aidan. What’s her name? I like her hair!”

Me: “Thank you. Her name is Kayla.”

Aidan: “Is she married?”

Me: trying my best to stifle hysterical laughter, “No not yet she’s only four.”

Aidan: “Oh Good!”

Then Aidan ran off to introduce himself, and subsequently offer his hand in marriage to Kayla. And though she rejected his proposal initially, Aidan was undeterred. He sang to her at recess and left little love notes in her backpack. I still have one I’m saving in case they really do get married someday. It reads:

I luv yu. Yor har is prity. I like wen leavs get stuk in it.

The picture he drew at the bottom is supposed to be Kayla with a leaf stuck in her hair, but it looks like a smiling gunshot victim who's been pooped on. Anyhoo, after a year and a half of love notes, serenades, and a bracelet for Valentine’s Day made of paper hearts with a different reason why he loved her written on each one…………..Kayla finally gave in and agreed to marry Aidan. It was all so adorable his mother and I nearly vomited.

And then………………tragedy struck: the romance was over. Kayla broke off her engagement to Aidan for reasons she refused to tell me, and the poor kid was heartbroken. Thank God his mother is such a terrific lady or I would have felt really bad.

A few months after Kayla ended her engagement, I was in bed with Kevin and therefore able to eavesdrop on the following conversation between my 2 daughters:

Kayla: Dana, who are you going to marry?

Dana: Henry. That’s not really his name but I’ve always thought he kinda looks like a Henry and if I use his real name in this blog I’m certain Dana will strangle me

Kayla: But he hates you.

Dana: He’ll come around. Men always do. Why? Who are you going to marry.

Dana: You just broke up with him!!!!!!!!!!

Kayla: I know. I’ll apologize as soon as we’re old enough to get for-real married.

Dana: But if you don’t like him why are you going to marry him?

And this is the part people where my hands are shaking and it’s unbearably hard to breath let alone type.

Kayla: Well, Kevin is going to need someone to take care of him forever, and Aidan won’t mind

Dear God this hurts. It hurts to remember these things and it hurts even more to write about them. Though we had NEVER discussed it with the girls or each other, at 5 years old, Kayla had concluded her twin brother would never be able to live on his own. She was planning out her future with a boy not out of love, but because she believed he would help her take care of Kevin for the rest of his life. It all came crashing back:

“Who will take care of Edward once your parents are gone?”

“Is that what YOU want?”

“It’s what’s expected of me.”

I didn’t sleep that night. After I dropped the kids off at school I got on the computer and stayed there for 2 days researching long term care insurance for the disabled. Then I registered Kevin with the Department of Developmental Disabilities so he can receive welfare benefits starting at age 18 and I opened a special needs trust. Next, I compiled a list of assisted living facilities in the state of NJ specializing in disabled adults. I haven’t toured any yet. I’m not ready. I don’t think I’ll ever be ready, but someday I am going to visit each and every one of these “Homes” and choose one for Kevin. Why? Because although I can’t stop Kayla from taking her brother once I’m gone, I’ll rot in hell before I allow her to grow up under the assumption that it’s what I expect. Her life will come with problems of its own so I’m certainly not making her responsible for mine.

I think about the girl who spoke to my class in 2007 a lot and wonder if her parents are still alive. I wonder if their lives still revolve around Edward and his care. But most of all I wonder, how could they do that to their daughter??? How do you saddle your “normal” child and her future family with such a tremendous burden? Isn’t life hard enough?

Everyone in my house is on, what we call, Team Aidan: after all these years we’re still routing for him, and it really pisses Kayla off. I don’t know if she will ever come to her senses and marry him but sometimes, as I’m falling asleep at night, I imagine having the following conversation with Aidan the day after she accepts his “for real” proposal:

Me: Aidan I have a great deal to say to you. You will not like any of it but you may not interrupt me until I’m done. Someday Chris and I are going to die and Kevin can not take care of himself. A decision will have to be made about where he’s going to live and I know Kayla will want to keep him with her. You need to know that is not what I expect and it is definitely not what I want. I’m talking to you about this because, unlike my daughter, I know you will listen and think about how taking Kevin will affect the rest of your life. It’s OK to say you don’t want to do it. I have taken out a long term care insurance policy and chosen a home for him close by. He will be cared for, at no expense to you, for as long as he lives. However if you decide to take him, and I hope you don’t, we have established a special needs trust, and as soon as you become his guardian that money will become yours.

I don’t know when I’m going to die Aidan, but I need to die knowing I communicated this to you: I do not expect you and Kayla to take Kevin. He is an enormous responsibility. You’re going to have a family of your own someday and it may be more than you want to take on. Kayla may be unreceptive at first, but it’s a conversation you MUST have before you get married. This is your life too and you deserve a say in whether or not you spend the rest of it caring for a special needs adult. I can’t make your decisions for you, but I have made financial provisions for whatever choice you make, and I love you no matter what you decide.

Most of you have special needs children. Please don’t live with the expectation that their siblings will care for them once you’re gone. It’s so unbelievably unfair. If you don’t want your children to have a special needs child don’t give them yours! I know it hurts to think about it, it hurts me to write about it but there’s something that hurts worse: the image of Kayla and Aiden’s marriage destroyed by the stress of raising small children alongside a special needs adult. Don’t let it happen. Your children deserve the freedom to make their own choices, and so does Aidan.