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I couldn’t imagine my life any different than it is now. I dreamt of this, I longed for this. Motherhood is what I was born for.
When my husband and I found out we were expecting our first child, we were on a see saw of excitement and fear. We would get excited and talk about the fun times we had ahead, then we would worry about how we would be as parents, would we have a healthy baby, could we provide for another human being?
When Miles was born, he was a perfect little 8 1/2 pound bundle of mushy goodness.
He was the ultimate textbook baby! We took him everywhere, never really missing a step in our pre-baby lives, we just had an extra little guy with us.
We realized early on that our mini man had a thirst for knowledge. He knew many many baby signs by six months old; he was able to recognize all of his letters by 15 months, and was counting and spelling by 18 months. When he had colors and pretty much every shape learned at 24 months, we were stunned. He knew shapes that even his five-year-old best friend didn’t know (crescent, hexagon vs octagon).
He was great! Like other boys, he obsessed about cars and trains, loved animals, and enjoyed playing games, both of the board and video variety.
We were proud parents. We couldn’t stop bragging, and I’m sure our friends and family got tired of it, but we didn’t care.
Then we started to notice a delay in speech. Having worked closely with children for 10+ years, I knew that all children develop differently, but I also knew Miles was behind. We voiced our concerns to our pediatrician, and ultimately decided to keep an eye on Miles and re-group in a few months.
As time went on, Miles slowly slipped way behind other children his age in speech and comprehension. We could not have a conversation with him. We would ask him what he did that day, he would answer, “yeah.” We would get more specific and ask what he did at the park, he would answer, “yeah.” It was getting harder for him to interact with his grandparents and extended family, who all live far away, and we rely on phones to keep in touch.
We also noticed a serious sensitivity to anything sensory (think five senses). He loved the beach, but couldn’t handle touching the sand. He loved the park, but didn’t want to touch the grass. He loved people, but didn’t like the sound of crowds.
Miles avoiding the sand when playing at the beach
We took him to get his hearing tested. He passed, as well as a two-year-old can, and we were sent on our way.
Our concerns came to a head when we realized Miles wasn’t making eye contact with us. When we would ask him to look at us, he might look for a split second, then off into space. We would be talking to him and he would look away, talking to himself. When we started listening, we realized he was quoting entire TV shows and movie scenes! He would recite the entire story time from the library, including the coughs that the librarian had throughout the morning … from weeks before!
We went back to the pediatrician.
After a lot of back and forth and even a little hesitation from the doctor, I gave him more examples of what we had noticed, and our doctor sat and chatted with Miles for a bit, then said the words that felt like the biggest weight being lifted from our shoulders: “I think we need to have your son tested for Autism.”
Of course! How has this not crossed my mind?! Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
I can’t tell you what a relief that was to hear. While all along, we had felt like Miles wasn’t fitting in with other children, he DID fit in, we were just trying to fit him into an impossible mold!
It was a freeing feeling to get home and read about Autism, and to finally hear about other children and adults who have the same qualities as Miles. To know that his little quirks are what make him who he is, and to learn more about how to better our love and care for him was lovely.
Miles enjoying a movie. He covers his ears just in case a loud scene comes on.
We realized also that some of the things we brushed off as frustrating behavior problems were all typical behavior of children with Autism.
It always seemed as though he was ignoring us when we would talk to him or call his name, or that he was being disobedient at dinner when he would bang his fork against the table incessantly or randomly get down from his seat and walk around. We had been confused as to why we never knew what would set off a tantrum. It seemed the weirdest things would send him into a complete downward spiral, impossible to cheer him up out of it. He became increasingly harder to feed as well. He used to be the BEST eater, but over time he would sit at the table, off in his own world. It got to the point that we would need to spoon feed him ourselves if we wanted him to eat, and even then dinner was easily an hour and a half long ordeal. It wasn’t that he didn’t like the food, it just seemed as though he couldn’t focus on eating. Going out to the store or to a restaurant seemed to be the biggest problem. I would have to rush through my errands in hopes that he wouldn’t freak out over anything, and going out to eat was becoming impossible. He would go under the table, he would bang the silverware, scream when his food (that he chose) came because he suddenly needed something different. It was unfair to the other diners, and we decided to stop going out to eat.
Other moms with children on the Autism Spectrum have all mentioned some of these exact behaviors, and while Autism isn’t an excuse, it was sure an answer for us. We knew better how to approach situations with Miles.
We turned to our local school district for further the evaluation. We live in California, where there is an amazing early intervention program for kids who need a little boost getting prepared for school. After assessments by different therapists, Miles was diagnosed with High Functioning Autism Disorder. He will get to go to special classes with peers who have the same types of processing disorders, and teachers and therapists who understand and know how to help.
In the mean time, we are slowly sharing his diagnosis with friends and family. It’s a hard thing to tell the people who love him so dearly. Not because we are afraid, but because so far we have seen a lot of negativity towards his diagnosis. So many people hear the word “Autism” and they have an image in their mind of what that means. I was one of those people before this journey. What so many people don’t know is that Autism is not a black and white disorder, where you either have it or you don’t. Quite the opposite. Autism Spectrum Disorder is all kinds of shades of grey. For Miles, Autism means he can’t have back and forth communication. It means he can’t handle loud noises or crowds, or look us in the eyes. It means so many things, but what it means most is that it is what makes Miles who he is. I can’t imagine a day without hearing an entire scene from Cars in his adorable voice, I can’t imagine the fun little games we play in silence, and I absolutely can’t imagine a better little boy for me.
We have found little things to keep ourselves from getting frustrated. We speak in a little bit louder of a voice when we need Miles’s attention. He responds the second or third time that way, rather than the 15th. We let him sit on the edge of his chair at dinner which keeps him from wandering, and we just know we have to remind him for every single bite, but it has become routine and no longer a frustration. We bring the iPad with us when we go to stores or restaurants to keep him calm and from getting overwhelmed by the people around us, and we have learned many techniques to help him calm down from a complete breakdown, or even avoid one completely!
This is not the end to Miles’s story. Far from it. We are only beginning the journey of his exceptional life, and we have much to learn. I look forward to connecting with other parents of children with Autism, and to hopefully share our story along the way.
A few great books I have read and reccomend are:
Louder Than Words & Mother Warriors by Jenny McCarthy
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
If your child has been recently diagnosed, or you believe that your child is showing signs of Autism, PLEASE take the time to download the 100 Day Kit from Autism Speaks. This PDF book is an amazing collection of info, personal stories, and advice on how to receive services! You have to give your email address to download it, but please take the time to read this if you have ANY questions, or if family or friends need more info.
If you would like more information on Autism, please check out Autism Speaks