When Jakob was first diagnosed, one of my biggest worries was that he would never enjoy being with other people. I feared that he would never care whether or not I was in the same room with him and that he would never want or have any friends.
He was perfectly fine all by himself in a room with a huge pad of drawing paper. He would fill every page with letters and numbers. Then he would watch Baby Einstein videos over and over and jump on his trampoline. He would take his stuffed bear that played a recording of ‘Twas the Night Before Christmas and play it again and again. All the while not needing anything from me other than a fresh pad of paper or new batteries. I went years feeling sad about that, feeling sorry for him and thinking that he was missing out on some of the most important things in life.
What a load that was. I was causing myself so much unnecessary suffering from all those beliefs that I was projecting onto him. I was the one missing out, not him. He had everything all figured out. He found the things that made him happy and he did them. Once I came to that realization, I stopped trying to drag him into the world he didn’t have any interest in (mine) and I joined him in his. I wrote the alphabet, I rolled markers across tables, I jumped on trampolines right alongside him. And that’s when a bond was created. That’s when he learned that it can be a whole lot of fun to do things with other people.
For years, that’s what we did. He chose the games and how he wanted to play and I followed his lead. I would look for openings and signs that he might be willing to try something new and different or let me take the lead. And it happened more and more with time. He came out of his world and joined me in mine. It was, and continues to be, a beautiful journey.
Eventually, he started to take an interest in other kids. It was difficult for him because of his limited ability to communicate clearly. The other kids couldn’t understand what he was saying. It’s still an issue, but he’s learning and he’s motivated. He truly wants to interact. It’s such a cool thing to watch and be a part of.
It was almost exactly one year ago today when we planned his first big party at the house. We were on the way home from school and his friend and classmate, Sarah was in the car with us. “Cars 3” was coming out on DVD soon and I just put it out there that we should have some friends over for a movie night. His eyes lit up and he said “Cars 3 party” and that was that. He’s been having regular gatherings at the house with 3-5 of his friends from school. He writes out save the date cards, invitations, RSVP cards with self-addressed stamped envelopes and then a few days before the party, he delivers a schedule of events. He has so much fun with the party prep and gets so excited as he waits for the doorbell to start ringing.
So much worry. So much pain. So much time wasted. I am so glad I learned how to love, accept, join and let him show me the way. Now it’s just a party.