Our Autism Journey | The First 100 Days | Written by: Melissa Custalow

I cannot sugar coat this. The first 100 days, and really the first year living with a new Autism diagnosis was HARD! The day-to-day was no different, but having to wrap our minds around what this might mean long-term was hard. The developmental pediatrician at UVA told us that Eli was “high functioning”. But what does that even mean?? Life did not feel like it was high functioning back then. Matter of fact, it felt very low functioning. Eli needed help with EVERYTHING and our entire life revolved around his needs. But we believed the doctor as he came highly recommended. He told us that as long as we keep doing what we’re doing, getting Eli all the help he needs, that he will grow up just fine and lead a normal life.

I never dreamed in a million years that we would have anything other than a typical little boy doing what boys do, being a dare devil and grossing me out showing me bugs he’s found, and injuries galore playing sports. Suddenly, all those ideas of what his life should be like disappeared. And the unknown, the all new uncharted territory, and learning to live with this new reality brought back my post-partum depression. And that was really disappointing because I was finally feeling better since having Noah 9 months ago.

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So, what did our life look like with an almost 3-year-old with Autism? Every single aspect of our life had to be planned ahead of time, and last minute plans would guarantee meltdowns. Even the most well planned events resulted in meltdowns. Eli struggled with changing from 1 simple activity to another, and moving from one place to another. And this is why we had several meltdowns on a daily basis. For example, he may have a meltdown if his favorite show was not on TV, or it was time to eat, or could even be something as simple as not being able to reach his toy or not wanting to share with his baby brother. And you might be thinking, oh its totally normal for a toddler to cry or be upset over little things. But it was more than that. It was full blown meltdowns. Several times a day. Every single day! Throwing himself on the floor. Screaming at the top of his lungs. Flailing about on the floor in overly dramatic fashion. And not for attention, because you could see and feel the anguish in his screaming. He would be actually pained by the disturbance. There is a difference between crying for attention, and crying due to pain. It tested my patience and was heart breaking at the same time. The same thing happened when going to and from any place, including visiting family and church. The therapist recommended making a picture book to help Eli go through out his day, and this did help a little. I took pictures of our front door, the steps on our porch, the car door, the car, the driveway, the road, the playground, the sidewalk, and photos of our most traveled places – family homes, church, grocery store and other shops, etc. I would flip through the photo book with him and read the story of our life before we went places and reverse the book when it was time to head home. This way he could visualize the transitions we would be making. This also helped with getting ready for bed, getting ready for meals and baths. Having those visual cues helped him to understand that more than one activity will take place, and it is safe to go from one place to another. His therapist told me something back then that I will never forget. In the mind of someone with Autism, they think whatever it is they’re doing or place they’re going is forever. To them, its all or nothing. There is no middle ground, there is no temporary. So when we would go and visit the playground, or Grandma’s, or church he would think those are the places that he will stay forever. And it made perfect sense as to why he would be so upset having his “forever plans” change several times, every day. I certainly would be upset too if my heart was set on something and suddenly it was taken away.

Two months after his diagnosis he aged out of early intervention and there was a 4-month gap in receiving therapy services. During that summer June – August 2011, we went through interviews with a local elementary school and academic testing in hopes Eli would be accepted into a new “Pilot Program” for 3-year olds. To spare you a long and frustrating story, Eli was ultimately accepted to start preschool where 5 of the children had some sort of special need and the other 5 were typically developed. To sum up the year quickly, it was a massive success! In fact, this one school year changed the course of our son’s entire life. For the first time since his diagnosis, we started to see the “high function” possibility.

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Next month when we get back together in my blog series, I’m going to share with you in detail and with photos exactly how this program transformed Eli from a shell of a toddler into a toddler who was able to hold simple conversation and learned how to parallel play. Thank you for reading my 3rd blog post in Our Autism Journey. See ya next time!

Melissa Custalow