Confessions: Special Needs Dad
I did not sign up to have a child with special needs.
In fact, when my eighth child was born, I had no first-hand experience parenting or living with special needs children. I knew several families with kids who had physical or developmental disabilities, but that did not provide me with any first-hand experience. A few of these families purposefully chose to raise kids with special needs. They pursued adoption or foster parenting with a desire to bring these children into their home. For them, it was a calling or a ministry to help those in need of healthy homes.
Joe - Sophomore Year
We Don’t Talk About Bruno
That was not me.
That was not on my radar as a dad.
In fact, when our eighth child was born, he did not have special needs. Joe was born with a healthy body and a healthy brain. Then, at seven weeks old, he was exposed to a virus that led to massive dehydration, multiple organ shutdown, and several areas of damage to his brain. The immediate result was several weeks in the pediatric intensive care unit at our local children’s hospital.
The first warning we were given by the medical team was that Joe may not even survive his stay in the hospital. Then as the doctors began to see small improvements and organs return to normal function, we were told that he would be able to go home. The warning that followed us on our departure from the hospital was rough. We were told to prepare for almost certain blindness and the possibility that our little guy would likely never walk or talk.
That was 16 years ago. Mighty Joe can definitely see. He also knows how to walk, talk, ride a bike, and navigate the internet like most sneaky teenagers, but we live with the aftermath of the viral damage to his brain and body every single day.
As kids his age have grown and matured, Joe remains stuck with a brain that behaves and thinks much like an immature 7-year-old. As we’ve watched each of his older siblings mature into teenagers in our home, Joe remains at an elementary level of emotions. Culturally, as our kids reached the mid-teens, they had each developed a love for sports, music, Star Wars, Marvel superheroes, and movies involving Hobbits, Wizards, and Pirates. Joe, instead, remains fascinated by Peppa Pig, Disney characters, and endless YouTube videos geared at preschool kids.
The world of medicine, neurology, and developmental psychology continue to tell us that this will not change much. (Side note: I am very excited for the potential use of AI in patients like Joe).
Joe coloring with a younger cousin
All this brings me back to my initial confession. I did not sign up for this type of parenting. Raising eight children brings enough challenges and for nearly three decades it seems like there is always something that has my attention as a dad. But, God did not hand out extra patience for me when Joe was born. If you have hung around theMT long enough, you will know that I am a driven, goal-achieving, Enneagram Type 3. I don’t slow down well, and I don’t naturally drop gears waiting for someone to “get up to speed.” If the job, the team, the organization is not moving forward at a quick pace, I can quickly become bored and then frustrated that we are not constantly accomplishing more together.
All this to say, I have been slow to adapt. As you might begin to shake your head disdainfully or wag your finger at me in disappointment, I am not talking about selfishness here. I’m trying to honestly communicate just how difficult it has been to accept the truth over the past decade. Sure I have learned to slow down and enter into Joe’s world. I constantly remind myself and others that he has the motivation and interests of a 7 year old. I have had to learn and really understand the intricacies from his broken brain. At the same time, I have also had to recognize and accept that many of my dreams for this son will just never happen.
MightyJoe still has regular visits with the neurologist at our local Children’s Hospital!
When Joe was a little boy, I was hesitant to even recognize or admit that he had special needs. I think that subconsciously I saw Joe acting like every other elementary school kid his age. The future was unknown and the gap between him and others was just not that big. Unlike my wife who saw reality and the future for what it was going to be, I was slow to acknowledge or see the difference that was most certainly coming.
As he grew and struggled more and more with his education and his interactions with others, it was clear that the road ahead would not be easy.
Now that Joe has reached high school and his body has grown and matured, the gap has widened significantly. We constantly do our best to prepare his neighborhood peers for who Joe is and how he responds in social settings. We live through disappointment after disappointment when a “normal-looking boy” struggles with his peers because he’s not a “normal- acting boy.”
Coming to grips with the notion that because of Joe’s loss of executive function in his brain means, he will always require help with making choices in his life has been difficult. “Corrective parenting” for us will never come to an end. There are many days when the path ahead looks exhausting.
Everything is an adventure with Joe. Pinecrest Lake 2021
Please listen to what I’m saying as I write this. The intent of this blog post is not to whine and complain about life with a special- needs kid. Please don’t walk away from the computer with that in mind. Instead, recognize that I just wanted to drop down a few honest words with anyone hitting this corner of the web. Especially dads. It’s easy to check out and ignore the reality of your situation. We all need both the encouragement of being told to “hang in there” and the acknowledgment that sometimes it is tough to “hang in there.” I just wanted to be the voice of a fellow dad who understands that and still might be the guy you share a cup of coffee or cigar with while we constantly keep an eye on our kids.
As a dad of a special-needs kid, having someone say to me how blessed I am to have been “given the gift of sanctification” by caring for a child with special -needs or some spiritual declaration that you trust God is going to do a mighty work of healing in Joe’s body are really more for the person saying it than for me. Yes, God gives grace and patience and strength in the moment by moment. I get it. I understand it. I experience it. But, the day in and day out of life with a special-needs child can be really hard and it’s okay to say that out loud. I can live in that space. I can live in that tension.
God is no less in the midst of that tension and life is no less difficult. It can be both/and.
Quietly making noise,
Fletch
