Madison House Autism Foundation had the pleasure of speaking with Nelson Kraft, singer and songwriter of the song “Windows in Your Mind.” He is also a full-time dad and advocate. Of his three sons, two have disabilities. Nelson’s big heart, charisma, and positive attitude are contagious. Despite struggles with the lack of services and care for his sons, he always remembers to tell himself to “keep plugging.”
“I’ve had to give up a lot of really good opportunities, but it’s okay – seeing my son smile is more than any job could pay me.”
What was your intention in writing the song “Windows in Your Mind”?
My hope in writing “Windows in Your Mind” was to do something with it that would help my kids and others’ kids and adults. I’ve written quite a few songs for disabled people, of course, but this particular song took me two years to write, believe it or not, because it was really hard for me to mentally go there. I would get to where I needed to be, start feeling torn up inside, and I’d have to back off and come back to it. So, it took two years to write a pretty simple song.
Tell us a little about your sons …
My middle son, Nicholas (24), always seemed a little quiet, a little distant … We thought that was just his personality. When it came time for him to go to kindergarten, he started having problems keeping up with everybody and started having behavior issues. We had all kinds of tests done, and after months, the doctors finally came back with a diagnosis of Klinefelter Syndrome, a chromosome disorder. His mind’s capacities didn’t develop past six years old. The child neurologist told us that our son wouldn’t be able to live at home with us past the age of ten. He was right. His mom and I ended up getting a divorce, and our son has been in and out of institutions – it’s horrible. Currently, he’s in a state school in Texas and hates it there. They just don’t have the services that should be available.
My youngest son, Kirk (20), lives with me. We found out he was severely autistic when he was about three years old. Kirk is always smiling and laughing … that’s why I wrote the lyric, “Sometimes I wonder if your world is a better place to be.” Calmness and music are the best ways to get through to my son. It helps him in ways that you wouldn’t even think of. Music has helped his speech and communication get a lot better. You wouldn’t believe how close music has made us. Kirk actually came to me this morning and asked for paper. He likes to draw and asking for things is hard for him to do. He likes printed-paper that comes out of computers – not notebook paper. You know how autistic people like their certain things.
My sons know that I love them. I’ll do anything for them. In fact, Kirk watches where I go, always wants to be with me and pretty much always is. I can’t have a normal job because Kirk can’t be left at home alone, and I’m the only one who manages him well. I’m his full-time caretaker. I’ve had to give up a lot of really good opportunities, but it’s okay – seeing my son smile is more than any job could pay me.
“That is my goal – to see, not only my kids, but all [people with disabilities] have something to look forward to and have a quality of life that’s fair to them.”
What is your greatest fear and greatest goal for your sons’ future?
I just worry about the future so much. My greatest fear is what’s going to happen to him when I’m gone. My greatest goal would be to see people like myself and others pulling together in front of Congress, fighting for new laws, saying, “Hey, we have a whole group of people here that need us.” There should be nice residential places where they each have their own room, there’s planned activities that cater to the individual’s preferences, a place to eat, people to care for them, community outings – things for them to do to make them feel important.
This has been my biggest worry – the new generation of young disabled adults growing up. For instance, here is a story from just a couple of months ago. Kirk, who is almost 200 pounds, has never had any behavior issues whatsoever, and he had a major meltdown in the grocery store that lasted for two days. It scared me to death because I had to go back and forth to the therapist to the doctor to the psychiatrist. They had to put him on more medication because he’s getting bigger, and it’s just so sad. I thought, “What if this continues and it becomes uncontrollable? What is going to happen? He wouldn’t do well in any place that’s out there.” It’s so scary. As a parent, you just feel so alone. You feel so beside yourself.
Can you imagine your sons working one day?
People with autism are better workers than half the people I’ve ever worked with. With computers, my son, Kirk, is on a level that I can’t even imagine. He’s a genius. He started using a mouse to bring up icons when he was just 2 ½ years old. It was like he was wired for it or something. With the proper supervision, I could picture him having a job in computers. He’s very capable of learning.
“With the proper supervision, I could picture [my son] having a job in computers. He’s very capable of learning.”
If you could give any advice to your younger self while raising your boys, what would it be?
I’d tell myself to be prepared for a really hard fight and for a lot of negative comments, a lot of “Nos,” and a lot of hang-ups on the phone. There are a lot of people who don’t want to help or know how to help. There are a lot of people who just don’t care. You begin to feel very beat down. The heartache has aged me so much.
I would also tell myself to start an organization that does what you [Madison House Autism Foundation] all are doing now for sure. When my kids were little, I would tell myself to worry about the future, but the future seemed so far away. I was dealing with the problems I had on-hand.
What does your ideal future for your sons look like?
My ideal future for my sons, even though it’s a little unrealistic, would be to build my sons their own home on a piece of property, and hire staff to come in and take care of them. I want them to live the life that they should be able to live – a higher quality of life where they don’t have to suffer. I picture it being on a farm because animals are very good. For instance, I have two cats, and one of them absolutely loves Kirk. She is his cat. Animals are very soothing. Though different people with disabilities like different things. You could have a farm-type situation. You have some who might prefer the beach because the ocean might be relaxing to them…They can walk around and pick up seashells. Whatever the case may be, it should be a choice. We could tell individuals, “Well, we have this choice and this choice and this choice,” and then they could choose what’s right for them. This could be done, and it could be done right. That is my goal – to see, not only my kids, but all of these people have something to look forward to and have a quality of life that’s fair to them.
How do you stay so positive after encountering all of these challenges?
I just keep telling myself, “One day there’s going to be hope. One day something good is going to happen.” I tell myself to keep plugging, keep hanging in there and fighting for my kids. Sometimes you just need to stand up, take a deep breath, and say to yourself, “Tomorrow we will go at this again.”
Summer Fun: A Recipe for Sensory Overload?
Hi Shannon, Here is a little donation from me and Kirk