A while back, a question came up in one of our Facebook support groups.
How do you cope with the daily struggles of your special needs child?
The response was overwhelming and informative. Everyone came together to offer their personal views and suggestions how they to cope with their child’s condition and the daily challenges it presents. There were perspectives and thoughts that I hadn’t yet been able to think about. It started to really make me think.
I also chimed in as it has been quite a personal journey for me to get to where I am. Learning how to cope is part of the natural process all of us need to go through. I was a completely different person prior to having our two girls. I was much more superficial and had no real grasp on the bigger picture. My perspective was very narrow minded. When Hayden was born, however, I started to see things differently. Her diagnosis, her struggles, and the struggles I face as her father has constantly made me think differently.
I beam with pride every time Hayden makes it through another poke, or walks one more step, or smiles or pretty much anything she does. She has already accomplished so much. I brag about how tough she is and how she is my own superhero. As she is nonverbal, I have always thought about the possibility that she won’t talk.
Would I ever get to hear “I love you daddy”?
What if she never talks?
My answer came to me one day from Hayden herself. I was holding her and we were dancing to Garth Brooks. She was giggling and smiling and having a good time. Halfway through the song for no reason she buried her head against my shoulder and held it there, as if to tell me, “I love you daddy”. I immediately burst into tears and I knew in that moment it didn’t matter whether she would speak those words or not. She told me she loved me in her own way. It was a profound experience that I am thankful for. She does communicate, it is just in her own way that she expresses how she feels. She has shown me that communication is more that words spoken. Through this experience, she has shown me another perspective.
Sometimes, perspective is all that is needed to bring change. No matter what it is, trying to see things from a few different angles can go a long way. It can be incredibly tough, and sometimes it seems impossible. Choosing to see Hayden’s abilities rather than worrying and fearing about what she doesn’t or may not do, has also helped me cope as her father. Don’t get me wrong, I will always worry for her wellbeing and the challenges that life brings her. The change in perspective, however, has helped me see her for who she is and the beauty/uniqueness in her condition. I look forward to the incredible things I will get to experience as her dad. The change in perspective has helped me see who she is and everything she has already accomplished in her life. I don’t concern myself anymore with if she will talk one day. What I now think about is how can we bring an effective means of communication into our family life that will help her in her communication. Speech is only one form of communication, something I never cared to realize prior to all of this. She is my teacher, and she has already taught me more than I could ever wish as a father.
I have had conversations with others that see things differently, and their perspective breaks my heart. They see her condition and her resulting limitations as who she is and associate it with a lacking ability to experience joy, happiness, excitement and therefore a reduced quality of life or purpose. This is angering and false and what I hope to change as she grows older. That even though she is not neurologically, genetically, or physically typical, she DOES bring value and purpose into this world. The joy she knows and expresses in her favorite moments when the bathtub faucet turns on or when her favorite bottle of milk is being poured is captivating. The work SHE puts into her development is inspiring. The resiliency she has after every poke, every procedure, every seizure shows an amazing strength I don’t know. She IS different, and that is awesome. Its a tough journey, but one that is unlike any other. Through it all we hope to encourage people to think of a more beautiful perspective.