Autism Journey: Where it All Began
Unless you’re personally affected by someone with autism, you probably really have an inaccurate perception of what it’s like to live with autism. April is autism awareness month, and you’ll probably see various stories on CNN, or maybe you’ll scroll through your Facebook feed, and find an uplifting story of a high-functioning person with autism who is about to graduate college or is working for Google. But, autism isn’t all about people like Rain Man. There is more to autism than the odd, but brilliant guy that’s faster than a calculator or musical savants that can replicate Mozart at 5 years old. Autism is called a spectrum disorder because a person with the condition can fall anywhere on the bell curve. Sure there are indeed outliers like these savants, but there are also those outliers on the opposite side who are completely nonverbal and lack the ability to care for themselves. The vast majority lie in the middle of the spectrum. I like to say that our son is one that is in the middle, but in reality he probably falls towards the low-functioning end of the spectrum. Since it’s autism awareness month, I wanted to introduce the face of autism for our family. Over the next few posts, I will write about our journey and tell our story. This is how it all started for us.
Autism first entered my life 7 years ago. When Ethan was 2, I started to notice slight delays. He had lots and lots of words, but he never really began putting those words into phrases or sentences. We actually counted his words when he was 1. (ya know because that’s what you do as first time parents) He had over 125 words, and incidentally spoke better than his typically developed younger siblings at that age.
Up to age 2, Ethan hit all the normal developmental milestones you look for with your first child: shapes, colors, pointing ect…. I can’t say I ever thought about autism at this point, but I did start having concerns. He would play with a car ramp for an hour just letting the cars go down the ramp over and over again. It wasn’t until after he turned 2 where I really started to worry. This is when I became a stay at home Dad, and spent every minute with him. I Googled my heart out and planned all these home activities crafts, games, songs…. However, Ethan wasn’t really responding to the activities the way you’d expect a 2-year-old to. I recall vividly one specific day. I planned a “blue” day to teach him the color blue. We made necklaces using blue fruit loops, made blue crafts, ate blue Jell-O, read books about the color blue, took a bath in blue water, and dressed all in blue. Around mid-day, my heart started to ache. I thought to myself, “Something is not right.” He was happy, and seemed to enjoy the activities, but he wasn’t connected. He was more interested in eating all the goodies than the actual activity. This “blue day” is the day that marks the true time I realized Ethan had autism. (ironic because the biggest Autism organization in the country uses the color blue -autism speaks)
I remember this day oh so clearly. When Heather got home from school, I remember telling her about the day. She wasn’t concerned. She had actually been working with kids with autism for a number of years. She had specific things that told her it wasn’t autism. “He has good eye contact. He’s affectionate… I don’t think he has autism,” she would later proclaim. However, I knew things were not developing, as they should. I didn’t know much about autism at the time, so I deferred to her judgment. That night with my heart filled with uneasiness and sorrow, I laid down next to her on the couch, and declared, “we have a hard kid.”
The next several months represents a period of hardship in my life. I had many expectations for my first born son. He was destined to do great things. He’s going to be the big brother and the protector of his younger siblings. I was dealing with the emotions of realizing my son has autism and having no idea what that will bring for the future. This period was made a tougher because I was coping alone. Heather and I were on different pages. However, it started to become more clear to both of us that he did indeed have autism. Heather finally came on board with the realization. Boy, am I glad she did! With the thundering quickness that only an awesome warrior mom could have, Heather had Ethan scheduled for an evaluation through the local school district. Knowing he couldn’t get services (speech therapy, OT, ABA..) without an official medical diagnosis, she had him scheduled for that as well. Speech, OT, and ABA evals and biomedical doctor followed quickly behind. We didn’t wait to start interventions for him though. Like I said, Heather had been working with kids with autism for years. She knew a lot of the first steps to take. Once Heather came on board, we immediately started him on a gluten, soy, and casein free diet. I remember asking her if we really should even deal with the diet. I remembered lots of work stories about “crazy parents” that would go nuts if their kid got one cookie. (yes we have proudly joined the cult of “crazy parents” too) She said, “why the hell not!?! It’s not going to hurt him to take away milk and wheat. If there’s a chance it will help him, why would we NOT do it!?!” She said this with such emphasis and enthusiasm; I never questioned it again.
6 years later, Ethan’s diet is still GFCFSF with additional restrictions geared more towards the paleo diet. The whole family has joined him in this diet. We all eat “paleo-ish”, and we’re all healthier for it.
I still believe that Ethan is destined to do great things. Through the journey he has taken us on, he’s helped us learn so much. He’s brought such joy to our hearts and touched many of have gotten to know him. Heather and I are completely different people than we were before autism entered our life. Our search to find ways to help Ethan has opened our eyes to many things we were once blind to. We live a different, more natural lifestyle. We are awake now. We know about the dangers of modern life and all the toxins that threaten our bodies, our kids, and their future. Our journey in autism began 6 years ago but in reality it’s still just
beginning. We have met many amazing and like-minded parents and doctors along the way. I’m so Thankful for all the pioneering parents that have helped us, and we do our very best to pay it forward to others. Throughout this month of autism awareness, my goal is to write a few more postings on our story in an effort to help others better understand. This is how it all began for us and it has shaped our lives for the better. Autism has completely changed our lives, but it’s not all bad. Sure, we are required to work harder in one hour than most people do in a week, but autism has taught us to celebrate the small things. Everyday, we strive to live in the moment and truly cherish life’s little blessings.
Organizations that Helped Us through Our Journey