I want to say something that might surprise you. It would have surprised me 8 years ago, when I was a mother with a newly diagnosed son with autism. I love autism. How can I say that? Love is not the word I would have used to describe my feelings for autism 8 years ago.
Grief, loss, and learning would have been my words then. I grieved for the child in my dreams; the one whose future was so unknown now.
I felt loss for all the “normalcy” that had been taken from me. And, most of all, I had to learn: learn everything that I thought I already knew.
I was a psychology major in college. I thought it could not be possible that my son who loved to cuddle with his mom and was full of giggles had autism. I had to learn what his autism meant.
I also wondered:
Would my child ever talk?
Would he be able to be in normal education courses?
And what would his life be like?
I cried and cried some more. I blamed myself. It had to be my fault. I had to have caused this somehow. The future I had envisioned was gone. I had to imagine a new future, one with so many unknowns. I had to learn: learn how to be an autism mother, how to be the mother my son needed. I had to learn about all the therapies, all the appointments, all the new trends to try, and I had to learn how to hear my son: to hear the things he could not say. I had to learn how to understand my son when no one else could.
The day you become an autism mother, or a special needs mother, is the day you are reborn, given a new purpose, new responsibilities, and new obstacles to face.
One of the biggest obstacles for my son, and most other autism families, is communication. It was devastating to hear from the doctors and the speech language pathologists that my son was so far behind on communication even if it was something I already knew.
My son did not speak any words at all, did not point, and did not respond to his name, but it went much deeper than I anticipated. My son did not understand the language that was being spokenaround him. He did not understand my words to him. He did not imitate or seek out joint attention. These two things, I would learn, are very important foundational steps for communication.
Speech therapy, along with other types of therapy, has been a part of our lives for most of my son’s life. Through these therapies, my son has made incredible progress. He has been in speech and applied behavior therapy for over 8 years now.
He has received occupational therapy and developmental intervention therapy. We started with teaching him to point, teaching him to imitate, and teaching him to show us what interested him. Once you can get that joint attention, once you can get him to copy something that you do, that is when you have created the basis for communication. We started with sign language when spoken words were not coming. We moved on to picture communication when sign language was not working. That is when we had our remarkable progress.
Once my son learned that he could use picture cards to get what he wanted, he began communicating. His initial communication system was called PECS, Picture Exchange Communication System. It uses Velcro pictures placed on a sentence strip to communicate. My son was finally able to let us know when he wanted to go swing, when he wanted something to drink or eat, and when he was tired. He advanced quickly and outgrew his picture binder.
Then, he moved on to what is called a dedicated speech device, or an AAC device: A tablet that only has the speech programming on it. It is a digital version of a PECS binder, but it is much easier to transport with a larger vocabulary capacity. When my son touches the pictures, it will speak those words for him. He can answer questions. He can ask for what he wants or needs. He can even tell me no.
My son has used his AAC device, which we call his “Voice,” to let me know that he was feeling sick, that he wants to go to grandma’s or Puzzle Pieces, and that he loves me. My son has even used his voice to play with a Lego spaceship counting down to blast-off. His speech device has helped to show his teachers at school how very smart he actually is even if he cannot speak any words.
It has been a long road, and we are not finished yet. Today, when I look at the autism diagnosis, I can see so much more than I did 8 years ago. Autism has allowed me to know my son on a much deeper level. It has allowed me to look into his eyes, and to see his soul shining through, to feel his heart in his smile and giggles. It has challenged me to hear what is not being said. It has brought a much deeper understanding of his life, his struggles, and his triumphs.
Autism has led me to meet the most loving special needs community, the workers who are drawn to this field to make a difference, the teachers who love your child as their own, and the staff who become friends and family. I no longer grieve for the child I thought I would have. Instead, every day I rejoice in the child I have come to discover, the child that teaches me so many things, in so many ways.
Jennifer has Bachelor’s degree in Psychology from Brescia University, and decided to her Master’s with an emphasis in Autism after Jacob was diagnosed. She works full-time as Assistant director at BUonline with Brescia University. She also teaches courses online. Jennifer said she often feels like she has one foot in different worlds, having one son with autism and another neurotypical son.
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