Our Autism journey has been like a roller coaster ride. We’ve experienced the lowest of lows and the highest of highs along a path with many twists and turns. Here’s our story…
It all started back in 2008. Big Brother was 15 months old and not talking. He had already met his other developmental milestones, so I didn’t immediately think that anything was wrong. Plus, we were in the process of moving halfway across the country and I thought maybe that had affected him.
While we weren’t overly worried, we decided to get Big Brother enrolled into the Early Intervention program in our new state. A speech therapist came out to our home and provided services for our son twice a month. Since we had just arrived, I decided to hold off on pursuing employment because I wanted to be available for Big Brother’s appointments. I thought speech therapy would be a quick fix, but I was wrong. It helped some, but not nearly enough. When our son turned two, new issues started to appear.
Big Brother would line up his toys in a perfectly straight line. If someone moved them out of place, he became very upset. Whenever someone tried to make eye contact with him, he would look away.
Then the tantrums started. I thought it was the terrible twos. But Big Brother didn’t throw tantrums over what most would consider to be normal things. He threw tantrums whenever I didn’t take a certain exit to get on the interstate. He threw tantrums whenever we walked by an escalator and he didn’t get to ride on it. He completely melted down whenever we were in a place that was loud. There hardly seemed to be any public place that was immune from his meltdowns. Shopping malls, restaurants, church, parties, graduation ceremonies, indoor gyms…you name it and I can probably tell you about a time he melted down there. Because of his meltdowns, our social life became pretty complicated.
Meltdowns and lining up items in a straight line weren’t his only issue. Big Brother also had very strong food aversions. When he was younger, he would eat anything! But somewhere around 24 months, he started being EXTREMELY picky. He developed brand loyalties and would only eat hamburgers from McDonalds and Great Value Chicken Nuggets from Walmart. Even if I switched the packaging, he knew the difference. He wouldn’t even try it if it wasn’t what he expected it to be. If he saw me cook it, he wouldn’t eat it. This became a very challenging battle to fight! We couldn’t narrow his aversions down to a particular texture because he ate both soft and crunchy foods. As a public health professional, his eating preferences freaked me out, but I COULD NOT get him to eat anything else. Many thought Dear Hubby and I were putting on about his eating habits until they tried for themselves and saw the real deal.
On top of those issues, Big Brother hated to try on clothes! Tags irritated him to no end. He would cry and tear off the tags on clothes before we could even buy them. Even though he was starting to get older, Big Brother found it hard to dress himself. Haircuts were a challenge.
In spite of everything that was going on, I rejected the idea that Big Brother had autism because he didn’t fit the profile of what I thought it was. See, I had a cousin with autism that I grew up with. Her signs and symptoms were totally different from my son’s.
Next came potty training, which seemed impossible! We tried everything with no success.
Then Big Brother developed new fears. He was terrified of elevators. He would put his hands over his ears and cry until we got off. Sometimes, we had to physically carry him into the elevator. Rain created major sensory issues. He hated to get wet.
Dear Hubby deployed a lot during this two and a half year period. Whenever he deployed, Big Brother would regress and his behaviors would become a lot more profound. As time passed on, the idea of my son having autism wasn’t so crazy to me after all. He was showing too many signs.
Dear Hubby received notice while he was deployed that he would probably be getting orders soon. When we got the news, we knew we had to go the official route for a diagnosis so that we could be sure that our new base would have resources for Big Brother.
All of the autism testing took place while Dear Hubby was deployed. The Psychologist interviewed me and took a detailed history. She had me and Big Brother’s Speech and Occupational Therapists to fill out assessment forms. The Psychologist also used several different behavior scales and checklists to test Big Brother, evaluating him over three separate visits.
Words can’t express the emotions I felt during this time. I was praying it wasn’t autism, but I couldn’t see how it could be anything else…maybe Sensory Processing Disorder, but that didn’t explain some of his other issues.
The day my son was diagnosed with Autism was the day after my birthday. The official news was a crushing blow, even though I saw it coming. I cried many nights and often felt physically ill. I was upset that Dear Hubby was deployed and I had to deal with everything alone, such as:
- The multiple public tantrums and meltdowns.
- Strangers, family, and friends making judgments about my perceived lack of parenting skills.
- The difficulty in finding childcare and a preschool that would be willing to work with our son.
I blamed myself for my son’s autism and experienced great guilt. My heart was broken that my child didn’t call me mommy or show affection towards me. I grieved for the dreams I had for him that seemed to be no longer attainable. My heart hurt whenever I saw other children his age talk, show affection, play sports, and develop friendships.
I grieved because I realized that I had to give up my career indefinitely, right at a prime time. There was no full time job that would allow me to have the flexibility I needed to take Big Brother to all of his therapies and be active in his educational process. Unemployment was no longer a short-term thing like I had fooled myself into believing.
I prayed a lot during this time. It helped me get from day to day. My close friends and family kept me in prayer too. And one day, I realized that I couldn’t wallow in grief because my son needed me!
There was no point in mourning the loss of my career and dreams for my son that he probably never wanted any way. I had to press forward and do everything I could to make sure that my son received everything he needed to be successful in life. He was my number 1 priority! Once I changed my perspective, things started to turn around for me and Big Brother.
I found ways to help deal with Big Brother’s issues. I gave him lollipops whenever he would get his haircut and whenever I needed to do any shopping. That distracted him and bought me some time to do whatever I needed to do. Whenever we went to the mall, I would let him ride up and down the escalator at least once. If his behavior was good, I would let him ride again.
Every morning, I took time to thoroughly explain the schedule of the day to him and I would remind him right before the activity of what was to come. Whenever we went to restaurants, I took toys and books to distract him from the noise. Sometimes I even took headphones for him to help mute the background noise.
I made Big Brother a visual schedule for potty training with pictures for every step. Becoming fully potty trained didn’t happen over night, but he did make progress!
During this time, I started attending a church that welcomed my son with open arms. There was a child care worker there that took to him right away. Whenever Big Brother saw her, he felt comfortable and at ease. Knowing that someone there truly cared about him gave me great peace.
Big Brother’s autism diagnosis seriously threatened my emotional well-being. I was broken. But God picked up the pieces and started making me over again!
Make sure you come back on tomorrow for Part Two of Our Autism Journey! I’ll be discussing the process Dear Hubby and I went through with choosing to have a second child after Big Brother’s diagnosis.