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By Nick Lutton, Family Engagement Program Manager, Family Voices of California and dedicated father
Father’s Day is a time to honor and celebrate the unwavering dedication, love, and resilience of dads everywhere. This is something that is often overlooked in the disability world. As a father of two incredible boys with special healthcare needs, I have embarked on a journey filled with unique challenges and profound joys. My 11-year-old son, Mason, who has severe autism and an intellectual disability, has taught me the true meaning of patience and unconditional love. His echolalia, a way he communicates, has become a language in our household—a beautiful reminder that communication transcends words.
When my son was two years old, he was assessed by the regional center at my mother’s request. She had noticed things in Mason that neither my wife nor I had observed. Why would we? He was our first child, and we both loved him so much. However, once the concerns were brought to our attention, we began to see what she had noticed. My son hardly made any eye contact with me. He also had eating issues, and there were times when he would not sleep for 48 to 72 hours. He wasn’t reaching his milestones, and the regional center diagnosed him, which shocked me.
To be completely candid, for the first 2 to 3 years after we began the litany of services, including early intervention such as speech and language pathology, ABA therapy, occupational therapy, and social skills therapy, I was still in denial. I was removed from the entire situation, and all I knew was that there were people inside my home daily; little did I know that that would not end anytime soon, if ever. Then came all the paperwork… a constant barrage of paper via mail, email, doctors’ appointments, and government agencies needing more and more information so my son could receive services to catch up. It never ended, and I thought it would be okay. It wasn’t.
Most people go through the initial grieving process of being sad or depressed or being lost in a state of melancholy; that wasn’t me at all. I felt cheated; cheated out of all the conversations that I know I will never have with my son. Before my father passed away, he and I would have deep conversations about life, love, and death, and I miss those. My son won’t watch TV with me, and I cannot take him to a large event like a baseball game, or talk with him about the big things in life such as when my father passed away. Mason doesn’t understand the concept of death or finality, and my list of grievances could go on forever.
That doesn’t mean that my son is not an amazing human being; he recites Mozart and Bach with unbelievable accuracy. He writes out diagrams of rooms that he has only been in for a moment. Even with his behavioral outbursts, he is kind and loving. I fear for the future, but I must remember to live in the present with him.
I speculate that most fathers feel a deep sense of pride in their children, but at the same time, some loss. And even though we carry the weight, it does not mean that it is not heavy! Most of us live with a lot of emotion held deep inside. For this Father’s Day, I hope that you can hug your sons and daughters and be appreciated not only by your family but by the community for all the weight that you hold.
I leave you at the foot of the mountain with Sisyphus, the king of Corinth, whom the gods condemned to roll a boulder up a hill for eternity only to have it roll back down. They believed that no punishment could be as severe as remedial labor, the repetitive task that could drive anyone mad. At the foot of the mountain, before he labors, Sisyphus smiles. The satisfaction does not lie in the result but in the act of pushing the boulder uphill. We must envision Sisyphus Happy!
This Father’s Day, I am excited to share the launch of my YouTube channel, “Dads for Disability.” This platform is designed to provide guidance, insights, Education and a supportive community for dads and family members raising children with special healthcare needs and intellectual disabilities. Our first educational film, a deep dive into the Individuals with Disabilities Education Act (IDEA), will be available soon. Through this channel, we aim to empower and uplift families, offering practical advice and heartfelt stories from our community.
Please consider liking and subscribing as well as sharing on your social media platforms.
Happy Father’s Day to all the dad’s of special kids!