I just read “Dora the Explorer’s Birthday Party” to my 14 year old son Jack for the fifth time today. He bounced on his knees with excitement while I read. He bounced extra high when I read his favorite part. He loves it when Dora ask the reader who cut the birthday cake at Dora’s party. The answer reads, “Mommy did”. He motions for me to say it again and again. “Mommy did, Mommy did, Mommy did”. For a moment I allow myself to feel touched because maybe, in that mysterious mind of his, he is relating Dora’s mommy to me. Maybe he is thinking about me cutting his birthday and it makes him happy. What a sweet thought.
Well, the reality is he likes how those two words sound together, “Mommy did”. He likes the phrase for reasons different from what I assume or desire. He likes it for reasons that most people don’t understand. My instinct is to want him to interpret and enjoy things the same way I do because it makes me feel comfortable and I can relate. It’s easy and familiar. It's so called normal, what society expects. We are taught that if we fit the mold everything will be ok. If we can meet common milestones we will succeed. It’s how things are portrayed in movies and books. It’s how you achieve a happy ending. It makes a good story. But that’s not Jack’s story.
Throughout Jack’s life the people who love him have wanted more than anything to relate and connect with him. We longed for him to be comfortable in our world and communicate with us. It’s a constant challenge when you have a loved one with severe autism. We have tried to teach him how to be comfortable in our typical everyday lives and understand things the way we understand them. We have tried to make him play, develop and communicate the way the parenting books instructed us. We thought that was the only way we could ever connect with him. We wanted him to learn to play with the toys his younger sister and our friends’ kids played with. We wanted him to behave like other kids and enjoy the things our society expects and assumes children enjoy. We wanted him to use things the way we do, the way they were made to be used. We wanted him to tolerate and appreciate the people, sounds, smells and sights of the world around us. That was the goal. That was the only way we thought he could make progress and be ok.
If Jack showed slight interest in a toy we bought 10 of them because we were so excited that he liked a toy. After all, toys are what children are supposed to play with and they come with instructions on how to play with them properly. Here is what you are supposed to like and here is how you are supposed to use it. It felt like all of Jack’s therapy sessions and our energy at home were spent trying to make him be more normal so that supposedly, his life would be easier. All I wanted was for him to play with a toy car the way it was meant to be played with, as if that were going to make his life better. Year after year I cried myself to sleep on Christmas night because he wouldn’t touch any of the toys that were under the tree. We were desperately trying to get him to enter our world so we could understand him, connect with him, enjoy him and play with him.
But sadly. we were failing and the more we pushed him to be like other kids, the further away he felt. The more we tried to pull him into our world, the more uncomfortable and irritable he got. However, what felt like defeat at the time, was actually the turning point that led us to him.
We surrendered. I didn't have any tears left to cry after his therapy sessions because he wouldn’t play catch or roll the toy truck. I realized that we had our sights set on the wrong goal. If we wanted to be more connected to Jack, we couldn't do it by forcing him to painfully and unwillingly enter our world and do things the way we do them. We had to go to him, get to know his world, learn his perspective, try doing things his way and then slowly attempt bring him back with us. We had to let him teach us how to connect with him. I began to pose these questions to myself. What about Jack's way of playing and communicating? Why do we have to force him to quit doing things he enjoys and be like us? Why don’t we, the people who love him and don’t have his challenges and limitations, venture outside of our comfort zone and try to see the world from his point of view? If we want to connect with him so badly, why don’t we go to him and make it easier on him? Why don’t we see what it's like to play the way he plays and attempt to feel what it is that he enjoys about it? Instead of repeatedly handing him a toy truck, why don’t we roll on the floor under a blanket and see how it feels? Why don’t we give him a vacuum cleaner for Christmas (he loves the sound) instead of superhero action figures? Join him. Go to him instead of forcing him to be like us. Say the random words he likes. Touch and smell the random objects. Push the button over and over again. Sit on the floor next to him and flap our hands with him. Listen closely to the sounds that unnerve him and try to understand why they bother him instead of forcing him to tolerate them. Mimic him. Play his games instead of ours.
So we did. And it slowly began to work. He began laughing with us and playing with us while we rolled on the floor with him. He began communicating with us in his own way. Our repetitive conversations may not make sense to others but if you pay close attention they begin to have meaning and are, quite honestly, much more fun and interesting than most “normal” conversations. It became easier to teach him the skills we struggled to teach him for so long. Teaching him to eat with a spoon while repeatedly making his favorite sound makes a difficult task much easier for him. Strengthening his fine motor skills by turning a vacuum cleaner on and off instead of building a tower with toy blocks felt much more comfortable and enjoyable to him. We had to let go of the typical expectations, put down the manual and do it his way.
Jack still struggles with sensory overload and debilitating anxiety every day but things are much easier now that we have a better understanding of his world. He feels more connected to us and us to him. It’s a two way street and once we realized there was a road to his world and we had to go there first, it made life easier and happier for all of us.