Our Autism Journey | Ah-Ha Moments | Written By: Melissa Custalow
Happy New Year!
How was your holiday break? I hope you are feeling rejuvenated, or perhaps you need a little holiday from your holiday. Either way, this is a new beginning for us both and I’m hopeful our year will be filled with new blessings. I’m so glad you’re here now and following along in our Autism journey. If you are a returning reader, welcome back!
Grab a cup of coffee and pull up a chair with me. I’m going to tell you all about my exhausting life being an Autism Mom of a young toddler, pregnant with baby #2, having dozens of in-home therapy sessions, having our 2nd baby, and our day-to-day life with a toddler and a newborn. Whew! Yes, seriously grabbing that coffee right now. Lol
Eli was 18 months old when he began speech therapy through our local Early Intervention, and I was 3 months pregnant with baby #2. He also had physical therapy and wore braces on both feet to help with stability, balance, and endurance but I can’t remember exactly when that therapy began. That moment in time has been lost to “pregnancy brain”. But early intervention was such a huge help in helping Eli meet new milestones, grow his vocabulary, make progress with eating, and gross and fine motor skills.
When Eli was between ages 15 and 24 months old, I was pregnant, tired, and sick constantly! Only 5% of pregnancies (so I have read anyway) experience nausea/vomiting all 9 months. How lucky was I to be in that 5% for a 2nd time?! Lol Thank God Eli started to walk at 18 months old because with my not feeling well and having a growing belly, it was difficult to lug around my chunky little boy.
This is one of my all-time favorite pictures. We welcomed home baby Noah on Eli’s 2nd birthday. It took Eli several days before he would come near me, or even speak to me after bringing home a baby. This of course broke this Mama’s heart but I understood it.
Nearly a month went by before he would stand near Noah, but as you can imagine, once he accepted baby brother was here to stay, the two of them would be inseparable. They share a bedroom, and birthday party each year too. Here’s a picture of the moment Eli came near Noah for the first time.
Alright, I’m not going to lie, the rest of 2010 and parts of 2011 was pretty much a blur of feeding, changing, therapies twice each week, several full-blown meltdowns each day and repeat, day after day, week after week. I didn’t understand why Eli had so many meltdowns over any and everything. I remember telling Danny when he would come home from work, “he only had 3 meltdowns today!” This didn’t happen that often, hence my excitement of “only 3 meltdowns”. It was just how life was for us and we didn’t know any different. But it was exhausting, and absolutely took an abundance of patience to just survive the day. And for giggles, I’ll just mention quickly that our sweet baby Noah also had colic. So after a trying day of tantrums, we took turns comforting a screaming infant from 8 to 11pm each night for 3 months.
Just keeping up with their basic needs was a full-time job as well. Eli wasn’t able to feed himself, feeding was one of his many delays. I often had two spoons in my hands, one feeding Eli and one feeding Noah. Both in diapers as well, however this did lead to quite a few fun diaper changing races between me and Danny. And, as big of a year as 2010 was, the year 2011 would be even bigger! We had 2 major “ah-ha moments” that lead us to pursue an appointment to have Eli evaluated for Autism.
It was January 2011, Eli was 32 months old, and we were invited to a close friend’s son’s 3rd birthday party. The theme was monster trucks and we all gathered in their home and outside too where there was lots of fun to be had! There was a bouncy house, power wheel trucks to ride in, and all sorts of other trucks, hula hoops, bean bag toss and other games to play. Eli wasn’t interested in anything there nor have any interest in playing with another child. He did find one toy though that caught his eye and was perfectly happy to sit in one spot and roll it back and forth, over and over and over and over….
Inside we had pizza and dessert and so many other children to play and have fun with. Except, Eli didn’t want to eat at the table with the other children. I tried to coax him along to have dinner with his friends, but he just screamed and threw himself to the floor, and continued to scream in anguish as if he was literally pained by being there. I carried him to the corner of the other room where we were before with Daddy and baby brother. It was much quieter there, and of course not crowded with people. Eli instantly calmed down and took a bite of his pizza as if nothing happened. We didn’t understand it. What just happened? Why did he have a full-blown tantrum when I brought him to the room full of kids, why did he instantly calm down when alone, and why the two extremes merely seconds apart and then acted as if nothing had happened? I was embarrassed that we had to eat alone in the corner of their house while everyone else gathered together having a great time. I’m not sure what everyone else thought of us having a toddler completely meltdown from seemingly nothing. Maybe they weren’t thinking anything. Being such good friends of ours, if they were thinking something, they didn’t say it. This birthday party experience was the biggest “ah-ha moment”, but we didn’t know it yet. We didn’t have the “ah-ha” realization on that day, but about a week later that light bulb would light up for me!
A week after the party I was texting with my bestie and she said she was chatting with her boss fairly recently about his son. My friend, Lizzy, just happened to mention to her boss how intelligent Eli was. That he was reading A, B, C and 1, 2, 3 flash cards before age 2. Her boss asked, “Does he have Autism”?
Wow… even now, just chatting with you here, I am taken back. Like it’s a conversation I’m having all over again for the first time. I’m holding my breath, I’m feeling anxiety, I’m feeling confused, I’m feeling scared, I’m feeling worried and lost and unsure what to say or do next. It’s crazy how those emotions come flooding back, even years later.
Later that evening, I told Danny about this possible Autism thing. Neither of us knew what Autism was, and we both googled it. And in wide-eyed amazement, Eli fit the definition perfectly. I had marked ‘yes’ to almost all of the possible characteristics. The only thing missing from this google search was his picture right next to it!
With this new-found knowledge, Danny and I started to reflect back on our life with Eli and so many things started to make sense. The tantrums, the delays in so many areas, the failed attempt to enjoy a birthday party…hind sight was getting so clear. This was the “ah-ha moment” that lead to me ask Eli’s therapist for recommendations on what to do next, and I jumped on her suggestions right away.
On March 9, 2011 our life officially changed forever. A developmental pediatrician confirmed our suspicions of Autism. This was actually a relief to us. We knew that a diagnosis would mean Eli could be eligible to receive more services and get the help he needs, but at the same time, having this official diagnosis left us feeling sad, scared, and unsure of what this meant for his future and ours. I do look forward to sharing more with you. Thank you for joining me with a cup of coffee and hearing our story. I’ll be back next month to share how we coped with this diagnosis and moved forward with our new reality.