‘Mama, no! Please no hair wash! Too scary!’ Was I being punished? I dread it just as much as he does.’: Autism mom shares insight into meltdowns, ‘We live a spectrum life’

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“When we took Eliot to his 2-year well-child checkup, we noticed he had some delays. We were handed a form to fill out in the waiting room and we quickly realized we were circling a lot of ‘no’ answers. We knew around this age, we should be circling more ‘yes’ answers. His primary care doctor referred him to a pediatric specialist and an audiologist. A few weeks went by and I finally got an appointment at the hearing center for Eliot. When we got there, Eliot immediately started crying. His little body was feeling extremely overwhelmed, especially when we were in the sound booth. He was having such a difficult time they couldn’t get an accurate reading. The audiologist said if we really have concerns his delays could be from hearing loss, they could do an Auditory Brainstem Response, where he is sedated and they use a special computer to measure how his nerves respond to sound. We made the decision to hold off on that because he seemed like he could hear us perfectly fine.

Courtesy of Haley Cary

A month or so after the audiologist appointment, the day finally came for the Pediatric specialist appointment. I remember this moment clear as day. We were there for around 3 hours. They observed Eliot’s reaction to different settings and scenarios. They played toys with him and they asked me an enormous amount of questions. I remember telling the specialist Eliot had been saying ‘dada’ for a while and then suddenly stopped. They called that regression. Eliot liked to line all his cars up on the carpet in the living room of our old apartment and stare at them. He would ‘side-eye’ a lot, meaning he wouldn’t look directly in front of him but rather next to him while walking. This caused him to bump into things a lot. He also made repetitive noises and grunts all day long.

Courtesy of Haley Cary

At the end of the appointment, the specialist told me Eliot had a diagnosis of Autism Spectrum Disorder. She handed me a bunch of pamphlets, which gave you a description of the disorder and hotline numbers to call to get support. The specialist also referred Eliot to UCP of Maine. She told me that was a special pre-school for children with disabilities like Eliot.

I started bawling as soon as she told me this. I was 21 years old at the time. I was a new mom and at this exact moment, I became a special needs mom. After the appointment, I immediately called my mom crying. I felt like this was my fault.

Did I do something wrong during my pregnancy? Was I being punished?

Courtesy of Haley Cary

In August of 2017, Eliot started his very first day at UCP of Maine. It looked just like a normal preschool but with a one-on-one dynamic, meaning each child has a teacher dedicated to them. This program has been life-changing for our family. He went from being completely nonverbal and terrified of anyone who wasn’t mom or dad to a non-stop chatty little social butterfly. Eliot is still having a difficult time going to the bathroom anywhere but home but every once in awhile, he will go at school. He’s at a point where, on the weekends, he asks if he can go to school because he misses it. I’m so grateful programs like this exist. His transition to public school in the fall is going to be far less bumpy with the help of UCP of Maine.

Courtesy of Haley Cary

Eliot’s autism journey comes with a lot of sensory overloads. One of his biggest challenges is hair wash nights. I dread them just as much as he does. A week or so ago, after Eliot was all scrubbed up, I said, ‘Eliot, can I talk to you for a minute?’ He immediately knew what I wanted to talk to him about and started crying. In between his deep breaths, he kept saying, ‘Mama, no! Please no hair wash! I’m clean! Too scary! Please, all done!’ I asked him if I could just take a washcloth and scrub his hair. In between crying and breathing deep, he said, ‘Okay.’

Courtesy of Haley Cary

We’ve tried everything known to man to make this a more comfortable experience for him but with sensory issues, this simple everyday task turns into a nightmare for everyone. We live a spectrum life. One way or another, we get through these simple yet trying times.

Occasionally, I’ll make posts on social media regarding challenging behaviors that can come up with autism. Meltdowns are important for me to shed some light on. I don’t talk about Eliot’s meltdowns a ton because I’ll often hear things like, ‘every kid has tantrums.’ While tantrums are really challenging to deal with, they are not the same as an autism meltdown.

Courtesy of Haley Cary

All of this seems vital for me to explain while it’s fresh in my head after JUST dealing with a horrific meltdown. This meltdown involved Eliot getting very upset because I wouldn’t stop the car, go through all the groceries, and find the bubbles I bought him. When we got home, he cried outside in negative degree weather for over 10 minutes because he wasn’t the first person to walk in the house. (That’s one of his quirks.) When we finally got inside and I was putting groceries away, Eliot started hitting me, throwing things, hysterically crying — you get the picture. With these actions, he is searching for any sensory feedback. Seeing my sweet, loving, affectionate little boy in this state is painful. There’s nothing anyone can do for Eliot during these times but give him some silent treatment. He’s unable to process language during these episodes and adding anything extra (even our voices) can make things worse.

Courtesy of Haley Cary

If you see a parent struggling with their child, ask them if there is anything you can do to help them. It’s likely there isn’t, but just that act of kindness when someone is struggling so much can make a huge difference. I’m not writing this to have a pity party. I just want everyone to have some autism awareness and if you see a child having a ‘tantrum’ in public, there might be a deeper reason for it. I often find myself left in tears, feeling utterly devastated for not being able to help my little boy when he is in such anguish. It’s very important I shower Eliot with love and affection once he is calmed down. I never want him to feel guilt or shame. I can deal with most of Eliot’s autism traits. Routines, routines, routines. Repetitive shows, books, and activities. Laundry. Toilets. I can deal with all of that, but I will never get used to seeing him in total distress. It’s a difficult time for everyone involved. I appreciate anyone who takes the time to read this and gain some insight into our autism world.

Courtesy of Haley Cary

I’m trying so hard to write about our autism life as much as possible because, for those enduring similar situations, they will sigh with relief knowing they are not enduring alone. And for those who have never experienced it, they can catch a glimpse of the hardships that autism brings and perhaps leave with more awareness than they entered with.”

Courtesy of Haley Cary

This story was submitted to Love What Matters by Haley Cary from Maine. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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