I am the proud mother of a spunky 8-year-old daughter who loves life and can't stop talking. I am also the proud mother of a 5-year-old non-verbal son with apraxia and autism diagnoses.
Both children have their challenges. And I love them both equally and without end.
While our daughter, Sophie, was fully mobile and speaking in sentences by age 1, Sammy has yet to speak his first word. When Sophie was 2 and could tell me what hurt, it was a relief. That day is still a dream for our Sammy. At 7-months-old, Sammy wasn't even sitting on his own power. He was content to lie on the floor, smile at my husband, Bill, Sophie and me and enjoy the view.
My sister is an occupational therapist and told me about her concerns for Sammy. She thought he should be able to support his own weight while sitting. Why wasn't he?
We made contact with the Birth to Three program for Waukesha County, and a physical therapist came to our home in New Berlin to evaluate him. "Low muscle tone." That's what he was. She worked with him, and he began sitting. He started rolling over. We had lots of other tests and doctor visits, and when he was 17-months-old, Sammy walked. That was a good day.
But other things weren't happening. Sammy wasn't trying to communicate with us in ways other than crying. He wasn't pointing. He wasn't talking. He wasn't trying. Sammy started speech therapy when he was 12-months-old, and after a year of treatment, our speech and language pathologist diagnosed him with apraxia. His brain wasn't telling his mouth how to talk; he couldn't motor through the task.
By the time Sammy was a little more than 2, he still wasn't talking. We consulted with a developmental physician in Madison. She saw Sammy for five minutes, and said, "This is autism."
Any parent who has ever heard those words knows what that feels like—and, while it's different for every parent, for me, it was devastating.
I'm an attorney and have been practicing law for about 18 years. During that time, I've taken court appointments to represent people as their Guardian ad Litem because of health issues — sometimes for issues surrounding autism. And those cases are heart-wrenching. That's all I could think about when this doctor said, "THIS IS AUTISM." That was Feb. 21, 2013, a day that is burned into my memory forever.
I cried for four days. I don't really remember what else I did those four days. I know I took care of our kids, but I remember feeling like I was in a fog. I had to process the information — I'm still processing the information.
After his diagnosis, Sammy started intensive autism therapy 25 hours each week, and he started special education at school four afternoons each week. He also continued clinic therapies three times a week. I always tell everyone: "He is the busiest guy in our house."
And now, Sammy is five. He's still not talking. He uses an iPad and an application called "GoTalkNow" to communicate. He does so with remarkable proficiency. He is IN THERE. He has things he wants to say, and he is trying really hard to say them. And those communications are breakthroughs. It still takes my breath away when I see him attempt them.
But the most beautiful thing is watching both of my children together.
Sophie is a very social little gal. She loves soccer, horseback riding, art and music. She loves her family and friends. And she deeply wants to have a close relationship with her brother.
Sometimes Sammy doesn't really want to play. He doesn't always look at her when she calls his name. He doesn't understand the game. But when he does, THAT IS MAGIC to watch. And it keeps getting better. Sammy is beginning to understand how he can communicate with her, and Sophie is figuring out how to communicate with him.
We are all learning.
Looking back on that diagnosis day, I really never thought I would smile again. I never thought anything could ever be good again.
And while that sounds dramatic, it's really how I felt. But seeing my children — as they are — playing together and laughing and chasing each other around Betty Brinn Children's Museum ... that is magic.
Raising a child with an autism diagnosis isn't easy or straightforward or uncomplicated. But it really makes you appreciate the pure magic of a sibling relationship. Sophie probably won't have a "traditional" sibling relationship with Sammy. But her five-year journey has already made her more compassionate, kind and loving to her brother and to other kids we call "special." And for that, I am grateful.■
Krislyn Holaday-Wondrachek is a lawyer who lives in New Berlin with her two kids and husband, Bill.