Being a mom to a child with autism

Click here to view the full magazine article

MY STORY by Rachael Grotegut

Our lives were turned upside down last year when we were told our 2 year old son Gavin had autism. It entered our world and erupt the seemingly 'normal' life we had been leading up until then. We knew, but at the same time we didn't. We thought maybe he was just a little behind. We knew he was smart and we thought he just needed time to catch up. Instead it was autism. Emotionally I became a weepy mess. I would cry at the mere mention of Gavin's name. To me this was the worst thing that could ever happen to my little boy. It felt as if they took my perfect 2 year old and replaced him with someone new. I wanted nothing more then to climb into bed and never get out.

In the beginning things appeared to be very somber for Gavin. He was a little over two years old at the time he started early intervention, and spoke very few words. Most of the words he had at the time were numbers; he hadn't even said Mommy or Daddy yet. He was reluctant to cooperate with anything that didn't fit into his agenda. This meant cooperating for any of the therapies that were suggested only resulted in melt downs for Gavin. When he wasn't upset, he just seemed so lost within himself. It didn't help the problem that my husband and I were stuck in some sort of permanent state of shock and disbelief. It was months of stomach aches, worrying, and wondering how this could have happened. I mean you always hear those stories where a parent has a child kidnapped or a child with an incurable disease. Without fail you will always hear them say, "I never thought it would happen to us". Exactly, I never thought it would happen to us. It did happen though. Fate stepped in and did not discriminate. It happened and we couldn't change it.

Finally we hit the acceptance stage in the grieving process and it was the best thing we could have ever done for Gavin. We knew we just had to embrace this horrible thing. We had to accept that he was never anything other then who he was, who he's always been. Nobody crept into our house while we were asleep and replaced him. He was our Gavin. The same little boy we brought home from the hospital. We also had to accept that we could not fix him; we could only try to improve his life. It was liberating. It was one of the most difficult things to do, although entirely necessary in order to move forward.

Moving forward is just what we did. It is also something Gavin did. About this time we found out that Gavin had a very special gift. At the tender age of two years and five months old, he had taught himself to read! We were in disbelief to say the least. This child, who barely spoke ten words, was now reading hundreds of them. How was this even possible? We didn't understand it and we turned to our speech therapist and behaviorist for help. Neither one of them believed us. Even proving he could read only made them suspicious that we had forced Gavin to memorize the words. We were even told he just had a photographic memory and having him read was not a good idea, because then he did not comprehend. We felt so angry and discouraged. This was supposed to be a huge breakthrough for us; still we were left feeling like it was another dead end.

We spent hours researching and decided Gavin fit the criteria to a tee. We took the advice we read concerning how to teach children with Hyperlexia to speak. It was very straightforward. We simply had to treat Gavin as if reading was his first language and speaking were his second. Based on the recommendations from the book 'When Babies Read' by Audra Jensen, we labeled all the items in our house. Everything was written out so that Gavin could read it, and then associate the word with the item. Within the first few weeks he picked up on more new words then we could keep count on. We moved on to drawing a body and labeling all its parts. At one point there wasn't a thing that wasn't labeled in our home. Eventually Gavin was up to over 500 verbal words. He knew all his colors, shapes, numbers 1-100, ABC's, body parts, everyone in our family's name. He was making progress in leaps and bounds. Sure, he still had a hard time following directions, answering questions, still didn't understand a conversation, and had a severe case of echolalia. But for the first time he had a voice. He had something to say. He had wants and needs and he could express them.

Last summer my husband began what we refer to as 'playing cards'. This was a game in which he would write something on an index card for Gavin to read. Gavin would have to read the card, and then go find the object, or act out this feeling, etc. It started out small with words like 'Shoe', 'cat', 'toys', 'sad', 'toes' and eventually turned into full sentences 'give your brother a toy'. It was a game Gavin loved so much and he would play every single day. Eventually there was nothing we could write that he couldn't fulfill. He stopped needing the game all together in the fall. He's moved onto bigger and better things like reading books.

Time marched on and Gavin has constantly progressed. With more language came less inappropriate behavior and less frustration. He was able to start preschool through our school districts special education program, just two days after he turned three. It is designed to help children with developmental delay, and we couldn't be happier with the program, it's wonderful! He's now been in school for nearly six months and every day he seems to grow. He is so much more aware of the world around him.

Now life with Gavin is filled with so much joy. He has this wonderful sense of humor. He can tease and joke with the best of them. He is also very creative. He loves to make up games and tell 'once upon a time' stories. His imagination is gigantic, and he can spend hours entertaining himself with a bread twist tie, 2 pieces of paper, and a plastic piece of corn on the cob. He is all boy and loves to rough house with his dad and little brother. He has a big thing for cats. I think part of him believes he is 1/4 feline. He has dozens of stuffed animal cats that he has named by himself. Although, I would have to say his greatest passion is the computer. His skills of reading also include spelling and typing too. He can get around on a computer better than most adults I know. We figure in twenty years he will be making us millions as he emerges as the new Bill Gates.

Autism doesn't always have a sad ending. Gavin is our success story. He has made a very unexpected comeback. Although he is not your typical 3 1/2 year old, we still have more to be grateful for than we ever expected to. Things we were told he would never do, concepts he would never grasp, he does them all. It's amazing to me how open my eyes became after I finally accepted Gavin's autism. I am not sure where we would be right now if that denial still ruled our lives. Had I just laid in bed wishing his delays away, we may have missed out on so much progress.

April is Autism Awareness Month- feel free to visit the website, or contact the Autism Society of Utah at 801-583-7049 or view their web site at

Return to April 2008 list of articles