My Boy: The Many Shades Of Autism

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.

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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.

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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).

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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.

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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.

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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.

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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!

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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

Comments

  1. George B. Fincke says

    Miles is my grandson, and I’m proud of the efforts both of his parents are willing to make for his sake. I look forward to the progress we will see in the bright young boy. I am thankful for the teachers and administrators in Miles’ rehab.

  2. Jessica L. says

    Thank you for sharing Emily. I completely understand how you feel while telling family members and friends. I feel as if I have to help educate them a little on the topic and let them know that there is nothing “wrong” with Cayla she is the same perfect little girl she has always been but now we know that she sees and interprets the world around her a little differently. I’m grateful to have an ally in you and that we get to navigate through this together :)

  3. says

    Thanks so much for sharing your journey, Emily! You have described so many of the aspects of autism that we observed in our son for many years without a diagnosis. It is a great blessing that you are learning at such an early stage. I look forward to reading more on this topic that is also close to my heart! :-)

  4. Vanessa says

    My son’s best friend is on the Autism Spectrum. He is an incredibly intelligent, witty and wonderful boy and we couldn’t be happier that they are best friends. May you have many amazing experiences with your son!

  5. Stephanie says

    I can’t pretend to know what this means in your life but only want to give you the name of a book. Whether it is something you can use in your walk with Autism is up to you but I like to share when I know of something. Dr. Natasha Campbell McBride has a son who had autism and she wrote a book called Gut and Psychology Syndrome. You can look up the GAPS Diet which is a shortened name for it. We’ve used the diet for other issues and found excellent results. Blessings to you and your family. I know your mom and dad.

  6. La says

    Emily, having enjoyed several hours with both you and Miles(in a restaurant this summer)I can only wish I had chosen a more comfortable spot for Miles. He is exactly who and what he is supposed to be and with you and Cameron for parents, he will learn mechanisms for coping in this strange world. (Sometimes I think this disorder is exactly that–a physical and mental reaction to a world that moves too fast, is way too loud, and fails to use all the senses.)

  7. Vicki says

    My son has Asperger’s Syndrome. He is 13 years old. We tell him often that his brain is just wired differently. Learning comes extremely easy to him and his memory is amazing, BUT he just doesn’t “get” social situations. We remind him that we are here to help him to learn how to act with other people – something that comes naturally to most folks.

  8. Pauline Holston says

    Thanks so much for sharing this great descriptive story! I caught so many things that seemed similar to what Paul and Annette had observed in Jacob….my grandson. I see things that just make me smile now, realizing that he DOES those things because that’s who he is! He wrote a bit of a biographical sketch of himself awhile back and I just loved it when he said, “I don’t HAVE Austism! It’s not a disease. I am Autistic….that’s who I am!” I will look forward to updates as you continue this journey!
    Pauline

  9. Karla says

    Hi Emily,
    I am good friends with Jeryl and she sent me your link to read. I am a staff asst. in our twp school system and work with pre-schoolers with autism. I am a one-one with a darling little boy, who is also high functioning. I absolutely love my job and love being with these delightful children all day.
    You sound like a wonderful Mom, who is a great advocate for Miles! Keep up the good work and always fight for what he needs in the school system and in life! Continue to educate the people where ever you go so that more people will have tolerance and acceptance. Thank you for sharing your story. I look forward to reading more of your journey :)

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