A miracle is defined by the Merriam-Webster dictionary as "an extremely outstanding or unusual event, thing, or accomplishment." Given that definition, last week our family most definitely experienced a miracle on Wilton Street.
My son Liam has autism. He was diagnosed at the age of 27 months and his prognosis was grim. We were told that he would probably never speak again and that he would most likely require institutionalization by the age of five. In spite of this, our hope was the same hope that most parents have for their children - that they will have great friends, a great childhood experience, an excellent education, find a career and leave the nest one day.
For any child with autism, life is a very, very long road - all of it treacherously narrow and straight uphill every day. There is never a moment's rest, yet there are lessons everywhere you turn. As years passed, each step forward was met with eight steps back. But through it all, Liam continually amazes me. He gets frustrated but he never stops trying. His constant strength inspires me to never give up. Concentrating on the positives of slow steady progress has been difficult and tiring, especially when you have to constantly rationalize that at least with each regression it wasn't as bad as the last and that we are indeed, slowly but surely, climbing up the mountain together. Don't look down. Keep your eyes on the prize. Don't look down. Keep your eyes on the prize. Over and over, step by step.
Liam finally reached a summit when he turned eleven last Sunday. He had his first big boy birthday party at Celebration Station, a loud venue packed with screaming kids and even louder video games. Loud noises used to make Liam scream for hours on end, but on this day, he took in all in stride.
For the first time, some of his guests were friends from school and not just family members. For the first time, we didn't hover over our little escape artist and, after strategically placing various adults at each exit, we let him run wild with the rest of the banshees. Liam would scamper over to get more tokens and dash off with his friends across the room to Whack-A-Mole on the head with big, soft hammers and shoot skeet balls --- all in a quest to see who could rack up the 5000 tickets necessary for the priceless blue plastic Spiderman Frisbee hanging high on the wall behind the ticket redemption counter.
By his side, every step of the way was Terry. Terry is 9 years old. He is also a survivor of Hurricane Katrina and a recent addition to the growing Baton Rouge metropolitan area. Terry's family left their home in St. Bernard Parish on the morning of August 28th , 2005 at 5:30am with everything they could pack into their car. Two days later, their home was swamped with floodwaters ten feet high when the levees burst in New Orleans. They lost everything. Rebuilding their lives has been extremely difficult with three small boys and nothing but a trunk full of clothes. Everything that Terry has been through in the last 18 months has left him a compassionate, caring, amazingly well mannered little boy.
Terry chose my son, Liam, to be his best friend in his new hometown.
On Wednesday, Liam jumped in the car after school and announced, "MOM! I got my friend Terry's phone number. Can we call him to spend the night on Saturday? PLEASE MOM? PLEASE? I will share! He is my best friend." I could hardly breathe. Nine years of countless hours of therapy - speech, physical, occupational, sensory integration, applied behavioral analysis, special diets, alternative medicines, chelation, firm discipline and lots of prayer to guide us through this dark journey - came rushing toward me with great force culminating in this one moment of true success. It was overwhelming. I drove home with quiet tears rolling down my face.
For your average American family the first sleepover is a fairly standard milestone. But when you have a child with autism, each "first" is an incredible miracle. You always have to think about the work that goes into each success. In this case, it was nine years of hard labor that helped unlock an imprisoned child with the ability to utter those 29 little words. Not to mention, all the social interaction that those words represent. For our family, it was truly a miracle moment.
Because autism is determined to keep us constantly on our toes, our story took a little twist, as it often does. When I finally reached someone at Terry's residence late on Thursday evening, the woman who answered the phone was less than enthusiastic when I asked her if Terry could spend the night. I was baffled because I had just met her at Liam's birthday party and she thought it would be great to get the boys together.
Upon further investigation, her attitude made more sense. Apparently, the number that Liam had given to me for Terry, the Terry that I was in the process of inviting to spend the night with us, is actually 42 years old and has been married for 20 years. It turns out that I was speaking to Terry's wife who for the life of her could not understand why some woman on the other end of town wanted her husband to come spend the night with us.
It seems that my very enthusiastic Liam had searched through the Baton Rouge phone book until he found a "Terry" and had written down that phone number.
Just in case you are wondering, Terrys are not one size fits all. They apparently come in different shapes, sizes and ages. But when one Terry is the center of your universe, your very first best friend and all you can talk about, they all look alike in the phone book.
Liam spent the rest of the evening focusing on any Terry he could find in the phone book. "Call this one Mom! 245-6637." He waited with baited breath as I dialed the phone. Wrong Terry. "AW MAN! Ok, call this one Mom! 323-7681!" We called a lot of Terrys until I finally was able to explain that we could not find Terry's number in the White Pages and it would have to wait until tomorrow. Liam's heart was broken. So we sat down to write a note together to Terry and his mom asking him to spend the night with us.
The next day, with Liam's teacher's assistance, we sent the note home with Terry to invite him to spend the night. He accepted and they both had their very first sleepovers.
Everyone was jumping in to make this a successful event for Liam. Knowing Liam responds well to lists but that social events can make Liam anxious, his speech therapist helped him put together a plan of action to map out a list of activities to help him move through the sleepover with ease. In this exercise, she helped him verbalize all the things he wanted to do with Terry once he arrived and place them in order of importance.
1) Make pizza with cheese and pepperoni
2) Watch TV and videogames
3) Make banana splits for dessert
4) Watch a movie called Open Season
5) Tell scary stories about ghost pirates
They were absolutely precious. Terry was patient and kind when Liam needed redirection. Liam accepted his gentle guidance. After a fun filled evening they were in bed at 9:30pm. As I closed the door, I heard Liam say, "Ok Terry, one more thing to do on our list. Let's tell scary stories to each other in the dark." They laughed and giggled behind the door for another 45 minutes before they finally drifted off to sleep.
I sat in my room across the hall and cried. It was a cry of relief and sheer joy. Liam genuinely had made a friend who loved him and really wanted to play with him just the way he is. I thought about all the difficulties that both boys had endured and maybe those difficulties are what made them each appreciate each other more.
Autism has been a devastating experience for everyone in our family. It came like a thief in the night, stole our son and sought to destroy everything in its wake. Finding anything positive about it has been a constant challenge. Every once in a while I realize that without it, I would have missed a lot of small miracles in my children's lives. I would have rushed on through them as rites of passage and dismissed them for the wonders that they are. Although we could have done without it, we have autism in our family and strive to make the best of each day, find the good and let all the bad go, wake up and face the music again another day. Everything he has accomplished from the first time he said "Momma" again after losing his speech, up to and including his first sleepover is amazing considering what the experts predicted all those years ago.
Don't ever let anyone ever steal your hope.
Celebrate every nugget of progress toward your goal. Stop, drop and roll in the pleasure of each and every special first in your child's life.
Expect miracles. They can happen at any moment.