My Lupus and My Disabled Son
Carl
State: North Dakota
Congressional District: ND01
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Diseases
Chronic Pain, Endocrine Disease, Heart Disease, Immune Disease, Kidney Disease, Liver Disease, Lung Disease, Mental Health
Issues and Challenges
Carl has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Mental Health Access, Caregiving, Disability, Gaslighting, Invisible Illness, Social Security Disability
My Story
TW: underage abuse
I learned that I was adopted when I was 14. Growing up, I had so many questions about my life. I remember the time my brother and I found our original social security cards with our birth names. Mom told us to stay out of her things.
During my childhood, I experienced a number of abuses; emotional, physical and sexual. I learned what self-reliance was before I was 10. As I became a teenager, I was able to spend a significant portion of my time on my uncles farm. This would be a safe place for me.
In high school I learned to cope with drugs and alcohol. Because of some legal trouble I had a probation officer. One day when my mom had placed me in a psychiatric unit for an evaluation the probation officer came to visit.
She said "you have two paths, one will lead you to prison. The other will lead you to a fulfilling life. Choose one."
I knew that I didn't want to go to prison.
So I chose the second path, and had myself placed in a group home for teens. I lived there until I was 18 and got my life in order. Shortly after graduation I joined the U.S. Army. I served stateside and in Germany following the First Gulf War. It was my honor to serve my country.
When I came home, I met a young lady and we started a family. That relationship didn't last. Early the next year, I met my bride. We have been together for nearly 30 years. We have five children and three grandchildren as of this writing.
Shortly before the new millennium, I got very sick. I lost 100 pounds in 3 months. We had a three month old baby, and two kids in diapers, plus my oldest daughter starting grade school. Close to death, I was diagnosed with Systemic Lupus. A disease that is rare in white men.
In 2003, my family adopted a little boy through foster-care. He had been born substance exposed to drugs and alcohol. We didn't know about the alcohol until much later in his life. When he was five, I began my advocacy journey by fighting for his needs and the needs of my family in relation to his care. He was on adult doses of some of his medications before he was 6 years old. When he was 8, we had to place him in a psychiatric residential treatment facility. As a result of what we and everyone else saw as his behaviors, he was banned from our community school shortly after he returned home. Through his life, he has been in six placement in residential care. most were for a year or more. All but one of those facilities claimed to cure him.
The one facility that didn't cure him also fought for his continued stay in their program which was repeatedly denied by insurance because he wasn't making enough progress.
After this we found a different doctor and our son was diagnosed with Fetal Alcohol Spectrum Disorder. I gave up my business, and became a full-time stay at home parent. I did all of the school and medical appointments. One year, my son and I logged more than 15000 miles taking him to appointments, sometimes needing to travel to two different cities in the same day 100 miles from our home. He was 15 when we received this diagnosis.
Our son was denied services for Developmental Disabilities because his IQ was 5 points too high. He doesn't have behaviors, he has symptoms. Fetal Alcohol Spectrum Disorder affects Executive Function. It is a brain based disability that occurs during brain development in the first trimester.
I have been advocating and discussing my sons case with legislators and professionals for more than 10 years.
In 2018, my wife and I formed a non-profit dedicated to helping other families of kids like our son. We vowed that other families would not know the struggle of being truly alone without any support for their family.
Back to my Lupus diagnosis, stress and anxiety have a profound affect on people with Lupus. Raising a child with special needs can be stressful even when you have a whole team of people supporting you. Those stresses are multiplied many times over when you have no one other than your spouse to help with the load.
So I advocate, I educate and I help families. Everything I have done in this life has led me to do this work. Yes it sometimes affects my health, however it is also very rewarding to hear a parent say "thank you. we felt so alone."
Our son is over 18 now. He has been to prison, he has been homeless. A hard lesson for us to learn is that we can't live his life for him. He has to do that, even with his disability. He understands that his brain is wired differently.
The best lesson we were able to convey to him through repetition for over 20 years was that he needed to hold himself accountable for his actions. Poor thinking skills is no excuse.
That said, our next effort will be to find and/or build a community support system to keep people like our son out of prison. He won't learn from punishment. In honesty, we should punish behaviors, not symptoms.
Perhaps some day I will tell you about Ronald McDonald and Houdini. And what they have in common.
My Motivation and Inspiration
Helping families like ours not experience the tragedy a lack of services and supports cause.
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