For all the other moms who are waiting with me, especially Stacy, Moranda, Marie, Caroline, Jennifer and Kelly…
When Danny first started school at the Grotto, one of his programs was waiting. To teach this skill, the teacher would show Danny a toy, a ribbon he liked to play with or sometimes even food and tell him to “Wait.” Danny would have to sit, without tantruming or grabbing the toy for a predetermined amount of time before the teacher would give it to him. Danny has since mastered this task and now I feel like I am the one who needs to be taught how to wait.
Parents of children with autism usually have to wait for many things that most other parents receive quickly. We wait for eye contact. We wait for milestones. We wait for first words. We wait for doctors to offer us answers about our children’s diagnoses. We wait for the education system to be able to effectively teach our child. We sometimes have to wait for family members to come to terms with our child’s behavior. We wait for terrifying tantrums to end. We wait for progress after starting new therapy programs/diets/medications/supplements. We wait for the time when we can take our child out in public without being stared at or receiving unsolicited advice. We wait to have a true conversation with our child. We wait for hugs and kisses. We wait for “I love you.”
I have been living with autism for about four years now and I am still waiting for many of those things. Some nights, I dream about Danny laughing, talking and playing like a typical five-year-old. Then I wake up and still find myself waiting. I get hugs and kisses from him now and when I come to pick him up a smile spreads across his face and he comes to me. I felt like I waited forever for that one. But, I am still waiting for my sweet little son to look at me and call me “Mommy” and I feel myself growing impatient. I get angry and plead with God. I’m not asking for much, no miraculous recovery or even a full conversation. I just want Danny to look at me and say “Mommy.” I hear other children, including my own typical boys, saying it, “Mommy, mommy, mommy” and I don’t understand why Danny can’t, why he won’t just say it.
My husband also waits. Danny has never called him “Daddy.” Sometimes, too, I think he waits for me. For his wife to quit cycling through the anger, joy, sadness, hope and despair that comes with having a child with autism. He waits for me to finally let go and trust someone else with Danny so we can have a weekend away. Even my other sons wait. They wait for Danny to play with them. They wait for Danny to call their names. They wait for me while I’m taking Danny to therapy and while I’m attending meetings about Danny. My family waits for Danny, my family waits for me.
Living with autism is like a master class in waiting. We learn to wait for our child, for our sibling. We bide our time and believe that one day all those things we are waiting for will happen. While we are waiting, we learn how to, bit by bit, pull our child out of the fog of autism. We advocate for better education and demand answers from the medical community. We patiently explain autism to neighbors, to other mothers at the park and to complete strangers at the grocery store. Sometimes while we are waiting, we discover the unexpected joys and fullness that come from knowing a person with autism. While I’ve been waiting, I’ve met the most extraordinary people I know I would have never known if Danny didn’t have autism. Even though I am still waiting, I have some great people to do it with.
I will probably be waiting the rest of my life. The road ahead of Danny is long and hard. But, the one thing that I want my son to know is that I will wait for him. Whatever road Danny’s autism takes him down, I will be waiting to see where it goes with hope in my heart.
