Philip Reyes, 12 years old, is our youngest author to date and is autistic. You can read his thoughts on showing kindness here. In this article Philip’s mother shares transparently the difficult journey of joy she has walked with Philip.
Autism. When our three-year-old son, Philip, received the diagnosis it was overwhelming. The word made me feel scared, sad … desperate. Words like ‘epidemic’, designed by the media to generate alarm did just that, and we were devastated that our special son was now a victim. If I knew then what I know now life would have been a lot different. We are far more positive now, but in the first few years, our fear filled in the gaps left by our ignorance.
It’s understandable but tragic that we often equate people who can’t speak with being dumb. My husband and I fell into that trap too. We honestly thought there “wasn’t much in there.” I look back and wonder “how did I ever think that!” But we were hearing so many competing voices. Experts were giving us sobering test results and statistics. Well-meaning friends were trying to give us hope by suggesting possible treatments that at times were pretty crazy. And others would sympathetically join us in our grief with well-intentioned words like “I’m so sorry” or “That’s terrible.” But those words simply seemed to confirm the tragic state of our family . This isn’t a criticism of those well-intentioned people. There are no easy words to speak in those situations. They were all trying in their own way to love us.
Back then we thought our main purpose as parents was to help Philip catch up with his peers and to act more “normal.” What I can admit freely now is that Philip is far from normal. And to a great extent I can now embrace this fact because along with his disabilities come unique and amazing gifts that just took time and the grace of God for us to discover. I am no longer grieving. And others don’t need to grieve for us either.
But for many years there wasn’t much hope. Because Philip couldn’t talk, much of who he was remained closed to us. We didn’t even know that he had a favorite color. More tragically there was silence into his heart and mind, his fears, desires and thoughts. When he was nine, however, we discovered a therapy that changed everything. By typing on a letterboard he was able for the first time to let us enter into his world and to hear his voice. With this window opened we discovered that inside he is intact , and he has a lot to say.
Philip began to give us insight into what his world is like and the relentless struggles he endures moment by moment. Why, for instance, does he pace and rock back and forth? Why does he move in such strange and compulsive ways? Philip was able to help us understand that he does not experience what we take for granted; Philip is not able to feel where his body is in space. Imagine how disorienting it feels to lose track of your body. Because of this he is compelled to make many movements he doesn’t want to make. The seemingly compulsive tapping and twirling of objects in his hands is just so that he can feel them. He hates that this behavior bothers people , but it isn’t purposeful ; any more than a person who is falling is responsible for their arms and legs struggling to feel solid ground again.
Though Philip can’t sense his body’s location in space, his sense of touch is super sensitized. Simple touches can overwhelm him and cause pain. Having his hair cut or nails clipped is unbearably uncomfortable. Visits to the dentist are so terrifying that the fear can cause him to lose his ability to act rationally.
We also learned that the problem is not that he misses important facts but that he is constantly perceiving too many at once. His eyes see countless details and paint an overwhelming crowd of pictures in his mind. It takes an exhausting effort to sort out the important information from all the other data crowding in through his senses. And the information is not quiet. He hears sounds all in one volume: Loud! Can you imagine hearing a crowd of noises, all yelling at once, without the ability to turn any of them down?
The physical struggle is amplified by the emotional struggle. Knowing that his behavior annoys people causes him anxiety when he is about to head into social situations. It’s the normal anxiety of a teenager but magnified many times over.
As Philip’s ability to understand the world became clear to us I felt a real sense of guilt. I realized how much we had misjudged him and how my attitude and behavior must have affected him. All the angry words I had spoken in frustration because I thought he couldn’t understand… he’d heard them all. I’m embarrassed to even think back on what I said. And yet Philip has never focused on how my actions hurt him. He’s never hesitated to express his love and forgiveness for me.
And as we began to truly get to know our son our purpose as parents began to shift. We realized Philip has his own voice, his own wishes and dreams. We began to learn that there is so much he can do , and all we need to do is to discover how to support him. He has a chance to live a really meaningful and purposeful life. Our life and mission is now overwhelmingly positive. We realized that people with disabilities have a role in this world given to them by God.
In fact, if there is one thing that I wish people would do differently it would be to show those with disabilities the patience that God calls all believers to bear. It’s easy for people to assume that Philip doesn’t want to be bothered, but this simply isn’t true. He wants to be included and to communicate as much as anyone else. He’s not dumb. He has feelings and desires. His mind is moving fast … it’s just communicating his thoughts that can be slow. So he needs us to be patient and to learn to feel comfortable around him even though it may be new and unusual for us . It’s OK that he needs more time to communicate. It’s OK that he is different. It’s OK that people may feel uncomfortable at first.
I know that in this fast-paced world it’s hard to stop, wait, and truly listen. But isn’t that what we need? Not just for Philip but for all of us.