Hidden Struggles of Fathers with Special Needs Children
Hope, Excitement & The Terrible Two's
As fathers with special needs children, we often start our journey without knowing what lies ahead. I can remember the joy my wife and I shared when we discovered she was pregnant with our second child. We had tried for many years to have another child after our first, but after six long years of no results, my wife had given up on the possibility of having another baby. I can remember us lying in bed one night and her looking over at me with tears in her eyes, saying, "I've come to grips with the fact that I need to be thankful God blessed us with one child. I think we should get a dog."
Well, as the story goes, we got a chocolate lab puppy a few weeks later and then found out Alicia was pregnant with our son Jake.
How exciting it was to know that our hopes and dreams of giving our daughter a baby brother were coming true! I was six years into building a reputable cabinet business and life was fairly smooth. Jake was a happy baby, but a quiet baby. By age 2, he was in a preschool class and was saying only "hi" and "mama." We began getting concerning reports from his teachers about his lack of participation and not listening. I kept telling my wife that he was only 2 years old and he's a boy, but honestly, I wasn't connecting with Jake as I had with my daughter at this age. Something was different, and my mind was beginning to drift to thoughts of fear, doubt, and anger because I wasn't seeing the progress in him that I was expecting to see.
Luckily, my wife had been an ABA therapist for the majority of her professional career, so she had the experience and resources to help her feel confident in seeking an autism diagnosis. This all happened at the onset of the COVID-19 pandemic, so you can only imagine what a challenge it was to get Jake seen by a clinical psychologist to confirm the diagnosis. We drove all over the state of South Carolina to get Jake the help he needed. I applaud my wife to this day for stepping up and addressing the issue instead of ignoring it. Without her, I fear where Jake would be today in his life and development.
How Fathers with Special Needs Children Face Unique Expectations
My wife forged ahead with me in tow to get Jake the diagnosis and therapy he needed. I did my best to support both of them with a smile on my face while I silently suffered without saying a word. I was consumed with feelings of self-pity: "I'm such a bad father. How could I have done this to him?" I was consumed with remorse and doubt: "We shouldn't have had another baby. Is he ever going to have friends?" I was also consumed with selfishness and resentment but didn't want to address it or confront it based on fears of how my wife would react to my extreme feelings.
I say "extreme" because they were just that. They were beginning to overtake me in those quiet moments throughout my day when busyness just couldn't get the job done anymore. I was constantly comparing my relationship with my daughter to the lack of relationship I had with my son. This is my son! My boy, my legacy! (Notice the selfishness here: my, my, my.) He was everything I had ever hoped and prayed for, and now he was "labeled"—he was not "normal." What was I going to do?
My choice was to drown out the noise in my head through alcohol, drugs, shopping, work, porn, music, exercise—you name it, and I was doing it as often as I could. I would let my wife deal with the details of helping my son and would be there to support where I could. Like many fathers struggling with work/life balance, I felt that I needed to medicate myself in order to take the edge off and be the father I thought I was supposed to be. Over the course of the next two years, my marriage started to unravel due to my lack of communication and selfish behavior. My business began to suffer due to burnout, and my health took a negative turn due to my heavy drinking and drug use. As the saying goes, "It is always darkest before the dawn," and life was about to take a dramatic turn for all of us!
Don't Give Up Before The Miracle Happens
On May 31, 2021, I drove myself to the hospital at 3:30am with acute pancreatitis and stayed in the hospital for the next five days detoxing. The gig was up, the game was over, and the doctors told me if I ever drank again, it would kill me. Again I said, "What did I do to deserve this!?" So many days I would come home from work, deal with the kids, help my wife, and then pour that first cocktail, crack that first beer, and relish in how much I "deserved" that drink. In order to live, I was going to have to find another solution.
Luckily, a good friend connected me to a program of recovery, and through that program I would become friends with a guy a few years older than me who had two kids just like me. His daughter and son were seven years apart just like mine, and his son had autism just like my son! I couldn't believe it! I had someone who could relate and identify with every feeling, every doubt, every fear that I had about my son and his diagnosis. Not only that, but this guy was a recovering alcoholic too! God had showed up big time, and I took this as a sign.
I followed this man's direction and began to understand just how selfish and resentful I had been about the whole situation. A simple act of kindness—one man reaching out to offer help to another man who is suffering—was beginning to make a huge impact in my life. This man sat me down and guided me through some specific action steps that began to open my eyes and heart to my selfish nature and how I was hurting my family through my actions and sometimes my inaction (or "the silent treatment," as I like to call it).
Ultimately, I had two choices in front of me: I could let this diagnosis turn me into a negative person and allow all of my fear-based assumptions to dominate my thoughts. I could stay angry and disappointed with myself, with God, and everyone else. Or I could look at this diagnosis in a positive way and begin to embrace Jake for the unique and beautiful kid that he is. I could work on myself in positive ways so that I could be a beacon of positivity for him! What was I going to do?
Finding Balance: When Timing Is Everything
By late 2021, my son had still not spoken to me. My weekly routine was to pick him up from speech and occupational therapy, and each time I picked him up I would hoist him up in my arms, give him a big hug, and say, "Hey Jakey! How was your day today?" He would never answer, but I always asked.
It was around this time that I had also had a profound spiritual awakening with my Higher Power, and He would show up big again! A few weeks after this experience, I walked by Jake's room while he was playing by himself, and he looked up at me and said, "Hey Daddy, how was your day today?" Just as simple and soft as you can imagine a little 3-year-old boy saying. It blew my mind, and I was beginning to realize that my plans are not God's plans, and I am not God, so I need to trust His plan!
I began to realize that my son Jake operates differently than I do. He marches to the beat of his own drum, and I should embrace it and celebrate it! Just because Jake does things differently doesn't mean they are wrong, and just because Jake doesn't respond to me in the timing that I think he should doesn't mean that he is never going to respond! My boy may not be ready to do "X, Y, and Z" when I am ready, but I need to make damn sure that I am ready to love and support him when he is ready to do "X, Y, and Z."
There is so much freedom in letting go and loving someone for who God made them to be. Jake just turned 7 this past May and had a big birthday party at our house with his entire class. He was mainstreamed into 1st grade this past year, goes to Taekwondo twice a week and is excelling towards a black belt, and talks and sings and dances like nobody's business! He's a great kid and everything that I ever hoped and dreamed for in a son. I thank God every day for where he is in life.
I think the topic of timing and expectations with my wife needs to be addressed in all of this because the stress of having a special needs child puts a significant strain on a marriage. Once I began communicating in a positive, non-selfish manner to my wife, things drastically improved between us. We became a team again, as opposed to two individuals trying to raise our children separately. However, I had to also accept my wife for the stress that she was under and be empathetic to her needs. I had to accept that my timing was not always her timing, and if I continued to do my best to show her that I love her, support her, and am here to help, the romance would come too.
Support for Fathers: You Don't Have to Navigate This Alone
This article is not meant specifically for fathers, but for parents, grandparents, aunts, uncles, brothers, sisters, and anyone who is struggling to address an issue with someone they love. This issue can be affecting both you and the person you care about, and most often this type of perceived problem is completely out of our control. What can we do to take care of ourselves and the person we love when faced with a situation like this? I am going to list a few key action steps that helped me, and hopefully they can help you too.
Managing Stress and Anxiety: Be Aware of Negative Thoughts & Behaviors
Do negative thoughts or feelings trigger you to look for something to distract you from how you feel? Do these distractions lead to more negative thoughts, or do they promote positive action?
If You Don't Know What To Do, Just Don't Make It Worse
Simple but powerful advice.
Look Within Yourself. Put Yourself In The Other Person's Shoes - Is this all about you and how this circumstance is affecting you, or is it about them? There is always someone else out there who has it worse than you do.
Feelings Aren't Facts
I needed someone to help me realize that all of my thoughts were focused on future outcomes that I had no control over or past mistakes that I could not take back. We only have the present. We only have right now. What are we going to do with it?
Work/Life Balance: Raising Kids Doesn't Need To Be A Competition
As soon as I began communicating with my wife in a positive and supportive manner, we started to work together as a team. It made such a difference when I did small acts of kindness and love, told her "I love you," bought flowers, or offered her some time off from the kids. Do all that you can to keep the romance alive!
Be Present. Put The Phone Away
can't tell you how many times I've watched the same kids' movie or kids' show with my children. Often, I find that just the simple act of being present with them is all they are looking for. A hug, a snuggle, and "I love you" goes a long way with a child (even if they aren't talking to you yet).
Manage Your Expectations
They say expectations are just resentments waiting to happen. Are your expectations more about you, or are they aimed at the other person? Don't let expectations someone has no idea you have about them interfere with your connection to them.
Know What You Can Control
You cannot control the things that come your way, but you can control how you react to them.
Building Community: You Are Not Alone
Seek help if you must! I was fortunate enough to experience the benefit of connecting with another man who could relate to me. I started Mindful Men Coaching to help create support for fathers of special needs children. We are lacking support for fathers in this area here in Charleston, and I am looking to collaborate with other men to help start a group where we can love and support each other along the way. It is so much better knowing you don't have to walk this journey alone!
Communicate
Ask for help. Talk to someone you trust about what is going on inside of you. If you feel lost and don't know where to turn, please know that I understand where you are and how you feel. Burying negative emotions and thoughts only makes matters worse.
Resources for Fathers of Special Needs Children
If you're a father with special needs children struggling with work/life balance, managing stress and anxiety, or feeling alone in this journey, you don't have to navigate this alone. Mindful Men Coaching offers specialized support groups for fathers of special needs children. Contact us today to learn more about our community and resources.
