Our Autism Story: A Family’s Journey of Denial, Acceptance And Finding Hope

  • by Marika Delan

    It was my beloved Mark Twain that said, “Denial ain’t just a river in Egypt.”

    We always knew instinctively that something was different about our son, Julian, but it was a long paddle up river to find out why. That’s because, for so many families, denial is such a protective force. It shields you from seeing the truth even when the truth is right in your face. It seems that kids on the high functioning end of the spectrum sometimes end up slipping through the cracks, getting labeled as “different” or “difficult”. Their academic skills sometimes overshadow their poor social skills. They get lost somewhere in the shuffle.

    Knowing instinctively that Julian was not a typical child from a young age, my husband Peter and I wanted to avoid pathologizing what we thought to be just Julian being “different.” We wanted him to thrive, but we also didn’t want to change his nature. We didn’t want him to lose the light in his eyes.

    Early Signs

    Early screening set us at ease because Julian met all his milestones and had no obvious signs at his 18 month check-up. Subsequent screenings showed him within normal limits, but symptoms were slowly becoming more apparent. Around age 3 was the time there was some concern from a Montessori teacher, which I met with resistance and anger.

    I dismissed his behavior because I believed the Montessori program to be too highly structured for such an active child, one who I would never be willing to medicate in order to educate.   We quickly took Julian to his pediatrician who was not at all concerned. I told myself if the doctor said he was okay, then he must be okay. I dismissed any thought that he might autistic.

    He later successfully attended a community preschool that was play-based and he thrived. As he grew into his 4’s and 5’s, I think we normalized Julian’s eccentricities as just him being odd, after all, our family was full of these kinds of oddities. I liked the doctor’s answer that there was nothing wrong with Julian. I saw his ability to function within his preschool community as confirmation of this and I held onto that as long as I could.

    Starting School- The Moment of Truth

    By the time Julian had finished preschool, we had already decided to explore other options, knowing his hyperactivity would not be conducive to the competitive environment of the school district where we live in Silicon Valley.

    We made it through kindergarten with flying colors through our online public school, California Connections Academy, which provides teachers and curriculum that I can help guide him through at home as his Learning Coach. I loved having a role in teaching him and he seemed to be thriving. I had felt that I knew him best and that I would have the ability to work around any challenges we faced (not being able to sit still, short attention span, needing frequent breaks). Kindergarten had been so easy. We were cruising along and I went on with my notion that all was well.

    But then first grade came and we hit a snag. We started the year with vigor, but when it came to sequencing in math word problems, it became clear something was wrong. He became increasingly frustrated as we tried to figure out how to navigate. My frustration increased in direct proportion to his.

    I watched him become overwhelmed in lessons as we tried to make our way through first grade together. I saw his love for learning in jeopardy because of his mounting frustration. I started to lose confidence that I could help my son in school. We hit a point where he would have meltdowns and scream that he didn’t understand. It wasn’t fun anymore and every day became a fight to get through the school day. I thought he was trying to manipulate me because he didn’t want to do the work. Everything had always come so quickly and easily, I didn’t understand at first that something wasn’t connecting. He started to lose confidence in himself as a student. I started to lose my confidence in myself as a teacher and as a mother.

    I still hadn’t connected all the dots: the obsessions with Doctor Who or Minecraft or whatever the item of the week happened to be, the not wanting to make eye contact, the hand gestures, the meltdowns over the smallest things, the squirming away when I would try to hold him in a mama bear hug. I still wasn’t seeing the big picture.

    Diagnosis

    We started to seek doctors and/or programs that could help us pinpoint what was wrong and how we could help our son but we hit a brick wall at every turn.

    We were met with two year waiting lists and no insurance plans accepted. After a few weeks when it was clear that services were not available, or at least not ones that were accessible or affordable, we turned to our school for help. Private evaluations, if you could even get it, would run into the thousands of dollars, which we did not have.

    But our school, California Connections Academy came through strong for us. They quickly and thoroughly evaluated Julian and services were put in place almost immediately. The efficiency and care with which the school handled the evaluation actually shocked me. I hadn’t expected it to be that way. I expected them to want to give us the least services possible as I had heard horror stories from other families.

    At our first Individualized Education Program (IEP) meeting, we finally understood why Julian was having such trouble. He was without a doubt on the spectrum. By the time I had asked for an evaluation, I already knew that this was true, but hearing it was another thing. Occupational therapy, speech therapy, as well as other accommodations, were immediately put in place.

    Acceptance

    We were relieved to finally know that Julian had autism, but at the same time, devastated. I blamed myself initially as many parents do. Here I was, a nurse, and I let my child go all this time without services that could have been helping him, because I was afraid for him to be labeled and put into a box. We mistakenly thought that giving Julian a diagnosis of autism would make everything difficult.

    But the surprising thing we found was- it wasn’t difficult. It was DIFFERENT. Things started to become easier once we understood where Julian’s strengths and weaknesses were, and how to work with both.

    Different didn’t mean difficult when we knew how to communicate, understand, teach, and most importantly, reach Julian. When we met him where he was instead of asking him to meet us, it was clear that my fears of a label were unfounded. It became clear to me that we were the ones who needed to shift. I finally understood what Ignacio Estrada meant when he wrote, “If a child can’t learn the way we teach, maybe we should teach the way they learn.”

    And even more than that, Julian has embraced his autism as we have worked within his limitations as well as with his profound gifts. When we talked to Julian about his autism, we approached it as something that made him special. We explained that his brain was wonderfully made in that it worked differently than most people. It was why he was already a really good drummer. It’s why his memory was so sharp, but it was also why it made some things so much harder, like making eye contact and being socially appropriate. But Julian regards his autism more as a gift than a disability. He has taught us how to look at things through his eyes– just a little differently.

    Albert Einstein said, “I never teach my pupils, I only attempt to provide the conditions in which they can learn.”

    Opportunities for Education and Outreach

    Julian’s autism has already provided opportunities for him to bring awareness to the community. On his birthday in August, pop superstar, Justin Timberlake singled Julian out of the audience when he heard that he was celebrating his eighth birthday. Justin and 25,000 fans sang Happy Birthday to Julian and it was a transcendent experience for all of us. I wrote a blog post, and Julian’s video went viral on YouTube. Every news outlet had picked up the story when I woke up the next morning. We realized we had a huge opportunity to raise awareness as well as find ways to provide services to children in need. We have since begun a pilot project in the Los Angeles area to bring music programs to autistic children, through our non-profit, Tree of Life Ministries.

    So often we see our differences as anomalies. Rather, they are opportunities to bring our own unique light into the world. As teachers, as parents, it is our job to kindle this light. Sometimes we need only cup our hands over the flame to ensure it doesn’t go out as we walk through the storm.

     

    Marika Delan is a scientist/nurse and an artist/freedom fighter. She’s currently coauthoring a book with husband, Peter about the profound ways in which his near-death experience changed the course of their lives. Marika blogs at www.bestillandstillmoving.com

    Her work has been featured on The Manifest-Station and The Huffington Post.

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