The First Ups and Downs of Autism

In 2015, my oldest son Elijah was diagnosed with Autism. Autism was new to us, I knew very little about it. We had known for a while that our son wasn’t typical of his peers and we had shared concerns with Pediatricians who responded with all children are different, some children take a little longer to communicate, to speak in sentences, etc. In my gut, I knew that something else was going on but was happy to have the doctors put my mind at ease. However, I will forever remember the day when I learned about autism.

We lived in a small town in Montana at the time and our next-door neighbor was out of town and he had a lady house sitting. She had a little boy about Elijah’s age and she came over so the boys could play in my yard. She began to tell me about her son and how he had been recently diagnosed with Autism. Out of curiosity, I asked her about autism and how they diagnose. As she began to tell me about the behaviors, the learning delays, and the sensory aversions her son showed; my heart sank. She was describing my son.

My son, Elijah, spoke little for a three-year-old, he knew all his numbers, shapes and alphabet but he could not say, ‘Mommy, I’m thirsty’. Elijah rarely engaged with me, I would try to engage with him but I was never sure if he even knew I was in the room. Blocks with letters and numbers were his favorite, he would line them up and yell out the numbers and letters on them. Nightime was difficult, he wouldn’t sleep and we had tried everything. He would regularly stay up until one or two in the morning engaging in destructive behaviors in his room all while rehashing his day by repeating word for word what he had heard throughout the day. Noises were difficult for him and he would regularly say ‘ what’s that?’ when the furnace turned on or someone was mowing their lawn. If it was a loud noise, he would cover his ears and occasionally scream or cry. These were all things that this lady was telling me about and then she said to me, ‘has your son ever been tested’? “He seems to show some of the same signs as my son”, with that sinking feeling I held it together and asked how to began the process for screening? Since, that conversation, I have lost touch with that lady and her son but I will forever be grateful to her. She did for me what no pediatrician or any friend had done, she educated me and then was honest with me about my son.

After that conversation, I spoke to Tom on the phone and told him. It took us a few months of denial before we reached out for the screening. After being put on a waiting list, Elijah was diagnosed at almost four with Autism Spectrum disorder. My heart was broken as they explained to us the challenges he would face. In many ways, it felt as though our lives had changed overnight even though Elijah was the same Elijah he was yesterday. The weight of grief I would carry over the next year sometimes was crushing. We all have dreams and aspirations for our children and I felt like mine had not just changed but had been demolished.

Many well-meaning people would talk to me about the vaccine argument, special diets, essential oils and other success stories they had heard. A lot of these were more painful than helpful because they all pointed to my son’s challenges. It felt as though all the advice and suggestions were to lead me to thoughts such as ‘Maybe if I hadn’t vaccinated him, he wouldn’t have autism’, ‘maybe if I did XYZ it would cure him’. All I wanted was my son to be accepted and it hurt to have well-meaning people trying to offer solutions to change my son or offering reasons as to why he had autism.

Every waking moment was spent researching Autism and all of the therapies he needed and special schooling accommodations, all of which were not offered in the small town we lived in. Then I would cry myself to sleep at night thinking about his future and our future. All the research in the world would not change his diagnosis but it could help him with the challenges he faced. So, we moved to New Jersey where they had the best services for Elijah.

We plugged Elijah in an incredible school which I will forever be grateful for and enrolled him in Speech and occupational therapy. We were doing everything we could but it was hard. Life was difficult. Parenting was heartbreaking, as a mom, I wanted to comfort my son when he was hurt or upset. He didn’t want me, he wanted to be left alone. When I would come near, he would scream and get more upset. Tom would want to play with him and he showed very little interest in him and sometimes would become annoyed at the disruption. Elijah showed little interest in us or his siblings.

It wasn’t long after we arrived in NJ that we began to see delays in the twins too. The mom guilt set in and I began to think that maybe it was my fault that they had some delays because so much of my focus had been on Elijah. However, in 2017, both of my twins were also diagnosed with autism. Moses, was very aggressive and anxious all the time. Esther was reciting whole movies after having only watched them once or twice. The days were filled with hitting, biting, throwing, attempts to elope and meltdown after meltdown. It was exhausting.

This all sounds as if I am gearing up to tell you about this huge turnaround, but I’m not. What changed? My perspective changed. Every day had become a day to survive, not to enjoy. Every day was another reality check of how much work it was. For a long time, it felt like I was living for bedtime but often that came with its own challenges, many sleepless nights, laying in beds for hours until they fell asleep.

My perspective changed when I realized as I was dwelling on all the things we couldn’t do as a family and all my kid’s challenges, I was missing out on the little victories. They were passing me by, I wasn’t enjoying my children. I loved them so much and it hurt so much to see their challenges, that was all I could see. All I could see was my inadequacies as a parent every day, my own selfishness which was followed by guilt. Once, I recognized that there were challenges that my kids were overcoming and that I needed to celebrate those, my perspective began to change.

There have been so many amazing firsts, the first time Elijah said hello back to me, or when he said ‘can I have some milk’ as opposed to just milk. Then there was the time when he surprised us all and said hello to Tom unprompted followed by a ‘how was your day?’ Once I stopped expecting my kids to join my world and I began to join theirs, life has not stopped being filled with new perspective and laughter. Getting the opportunity to see how my children view the world is a gift that I will never take for granted. My children have many challenges but they have so much to offer this world. They have changed my world and how I see it. There are new accomplishments every day that may seem small to others, but they have brought me so much joy and pride in them. They are amazing and the amount of work, effort, and endurance that it takes for them to overcome these challenges deserves dance parties, high fives, and ice cream.

In our household we truly celebrate everything. They are beautiful gifts and are a joy to everyone they meet. My daughter, Esther, impresses me daily with her ability to memorize whole entire movies or songs after having only seen or heard them once or twice. My son, Moses, is so inquisitive and is amazing at creating these incredible inventions such as catapults, laptop stands, comic books, envelopes, maps, board games, etc. Elijah knows almost all of the countries of the world and their flags. They are amazing as they are and I am blown away regularly with the fact that I am their mom. Once my perspective changed, I began to enjoy and celebrate there strengths and accomplishments more. Their challenges have not gone away, some have gotten easier while some are still very difficult and heartbreaking for me to watch at times. Those feelings of heart-break and frustration no longer occupy my every day, my gratitude and pride in them do.

Maybe you can relate to my story or maybe your story is different. One thing that I know for sure though, is that when we learn to be grateful for what we have and rejoice in the small victories, we gain perspective and more joy than we could have imagined. There is always something to celebrate even if it is just getting out of bed in the morning or checking one thing off your to-do list. Life can be overwhelming when we can only see the challenges. What are the little things we can be grateful and proud of today?

7 thoughts on “The First Ups and Downs of Autism

  1. Wow — love this so much, Megan! Thank you for inviting us in. Perspective is something everyone can relate to + it is a huge game changer when it is “in check”. Grateful to know your family — you guys + the Woodies truly are amazing 🤍 can’t wait to see more of your journey unfold! xox

    Liked by 1 person

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