Tag: father’s day

Happy Father’s Day to all the dads of special kids!

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!

A Special Father’s Day Message

By Joshua Weitzman, Executive Director, Alpha Resource Center of Santa Barbara and father of Hannah

Sixteen years ago, my wife and I sat in a hospital room with our four-day-old daughter, Hannah. Hannah has Down syndrome. We’d gone home from the maternity ward only to end up back in the children’s wing via a panicked trip to the emergency room the next day. 

Through a series of events, we learned that Hannah was not getting nutrients into her little body. This was primarily a result of her low muscle tone, and it was exasperated by our lack of knowledge as her parents about Down syndrome. We had gone through various emotions that week, spanning the range from joy to disorientation to fear. However, at that moment, the feeling that stood out was loneliness. 

Thankfully, it was later that day that the local Arc Chapter, Alpha Resource Center of Santa Barbara, reached out to us. They came to visit us in our hospital room where they shared valuable information and let us know we we’re not alone. From that moment our learning curve was steep as we began to understand our new world. 

Over the next several years my role grew from father to board member to Executive Director. During that time, I discovered there was an even larger community of families like mine. Not only did Arc Chapters exist throughout the state, the Arc of California, of whom many of those local chapters are members, was working on behalf of us all to ensure everything from funding for the vital services we’d received for Hannah to protections for those with intellectual and developmental disabilities (IDD) through new legislation, all while connecting families and organizations throughout the state.

We couldn’t have done it alone. I couldn’t be the father Hannah needs on my own. I’ve learned from the fathers who came before me. I watched firsthand as fathers advocated for their children’s individual needs. I heard the stories of generations of fathers lending their voices to the cause, inciting change at the state level. This Father’s Day, I’d invite other fathers to join the effort. We are making a difference.

Whether life has recently brought you into the IDD community, you’re a longtime family member of an individual with IDD, or perhaps a community member that understands the importance of inclusion and opportunity for those with an IDD, there’s local and state levels of involvement and resources that can allow you to make an impact, too. 

My family will forever be grateful for the work of the Arc of California and local Arc Chapters in every community. While I never imagined this path for my life or family, I wouldn’t change it for the world. It’s led me into relationship with some of the most amazing people I know – and at the top of that list is Hannah.

 

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