‘I NEED to be the best advocate for my children. I KNOW I’m not the only mother going through this. Your feelings are VALID.’: Mom of boy with autism urges ‘compassion’ and self-care in motherhood

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“I was 2 weeks into the senior year of my undergraduate studies when I noticed something didn’t feel right. I exercised on a regular basis with my college cheerleading team and noticed my pregnancy symptoms in the middle of an intense morning workout. To be completely honest, my first feeling was denial. I took more than a few tests that all said the same thing, but I just couldn’t wrap my mind around it. I was terrified. I only told my partner and best friend, but it didn’t set in for me for a while. Once it did, I was determined to finish my last year of school and take on this new stage of my life.

I balanced my pregnancy, part-time work, and my academics. I ended up doing better that year than most of my years of college, honestly. Maybe it was the idea of knowing I was doing it for more than just myself now. Ironically, my due date was set for just around graduation, so I worked hard to get ahead of assignments in case I ran into any hiccups at the end of my pregnancy. I got through pretty much most of my coursework when I went to my OBGYN and my pregnancy took a turn.

My blood pressure had skyrocketed, and I had an extreme buildup of fluid in my legs, feet, and face. At 36 weeks pregnant, I was told, ‘You have been diagnosed with pre-eclampsia,’ and was placed on bed rest with a follow-up appointment 3 days later. I went back in for my follow-up appointment to higher blood pressure and was told, ‘Come to the hospital tonight to be induced.’ I guess it didn’t really set in much to me because I went back home with no extra anxiety or anything and came to the hospital that night. 26 hours after the start of my induction, my first child was born on April 14, 2015, healthy and screaming. 4 weeks later, I graduated summa cum laude with my bachelor’s in psychology and sociology.

Courtesy of Ashley R.

To be honest, motherhood came easily for me in the beginning. My son and I bonded so well, and it felt so natural. I felt like I had a pretty easygoing baby, aside from his ongoing struggle with acid reflux as an infant. Just before my son’s first birthday, we found out we were expecting our second child. Halfway through the pregnancy, I was hospitalized due to a funneling cervix and preterm contractions. I remember being faced with the fear of them not being able to stop labor and my daughter being born when I’d barely made it to viability. I don’t know what happened during that stay and being on hospital bed rest, but preterm labor stopped, and the rest of my pregnancy was fairly healthy. I gave birth to a healthy daughter at 36 weeks with no complications and no health problems. I will forever be amazed at what felt like a miracle story to me.

Courtesy of Ashley R.

I was fortunate to stay home with both children in my daughter’s first year of life. Having two kids under two was a bit easier than some of the horror stories I’d heard, and I was pretty thankful for this. I was in an online Master of Social Work program, which was going well, and things felt so complete. Fast forward about a year later, and I started to notice some things with my son. He’d hit all milestones at checkups, then all of a sudden, he regressed. His vocabulary disappeared and he started to withdraw socially. I began to express these concerns to my kids’ father and then to our pediatrician. After months of early intervention and noticing more signs, we had our son evaluated for autism. It was then we were told, ‘Your son is indeed on the autism spectrum.’

Urban Lane Photography
Courtesy of Ashley R.

Despite having an idea he was autistic before the diagnosis, something about actually hearing those words was terrifying. I feared not advocating for my child the right way. I feared my daughter feeling neglected. I feared what would happen when my son got older. In spite of all those fears, we got referral after referral to ensure our son was in the necessary therapy. We enrolled in pre-K for children with special needs and worked with his teachers to set goals for him to succeed in this setting. There was no doubt I was doing everything I could to make sure my son received the assistance he needed. Reality was weighing on me heavily, though. My family didn’t seem to understand the challenges we were faced with, and I felt pretty isolated. I realize now I could have expressed my needs more to my friends and family, but for quite some time, I felt so alone.

The Nashville Photographer

I didn’t even feel like my partner completely understood. It was like everyone saw I was advocating for our son and just figured everything was fine. I was not fine, though. I dreaded going out in public and the stares when my son would have a meltdown or start making sounds. I heard so many times, ‘He doesn’t look autistic,’ but I couldn’t figure out what people expected autism to look like, or if this was the reason they felt like it was okay to stare or make comments during moments that were both overwhelming for my son and myself. I felt so lost. Somewhere I just lost myself in the midst of giving my all to advocating for him. I began to feel more and more like I wasn’t giving my daughter the attention she needed. I just sank deeper and deeper into that world.

Courtesy of Ashley R.

Though it took months of feeling on the verge of an emotional breakdown, one day I recognized I needed to discover how I could refuel myself. I wouldn’t be good to anyone if I didn’t. I took the time to nurture myself and tap into resources for myself, then began to search for balance in my life because it was clear that would be key. Almost 2 years later, I am in a career I love with my Master in Social Work. My son (though still technically nonverbal) is meeting more and more goals and has blossomed socially. My daughter and I have grown the mother-daughter bond I always imagined having with a mini-me. On top of all of that, I have reconnected with myself and committed to a lifestyle of prioritizing my needs so I can be the best mother and advocate for my children.

The Nashville Photographer

I currently blog about this journey and my lifestyle because I know I am not the only mother who has experienced this, or something similar, and the most important thing I want others to know is your feelings are valid and you are not alone. Most importantly, as a mom and primary caregiver to a child with special needs, I want people to know it is not selfish to take care of yourself, too. You deserve to pour into yourself so you can show up whole. You deserve breaks. You deserve compassion. You deserve the same amount of care you give to others.”

Morgan Carr Photography
Morgan Carr Photography

This story was submitted to Love What Matters by Ashley R. of Nashville, Tennessee. You can follow their journey on  Instagram, Facebook, and blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘I can only do so much.’ It’s just the two of us. One day, I won’t be here. Who will tell her I’m gone? Who will make sure she’s safe?’: Autism mom shares daughter’s journey, ‘I’ll let her lead the way’

‘Mama’s only human. I can’t promise I won’t ever let bad thoughts creep in or have bad days. But I can promise I’ll always be there.’: Autism mom pens open letter to kids

‘That’s so sad.’ But we are NOT sad. I just wanted to squeeze him so hard and run right out of there.’: Autism mom says ‘His diagnosis is actually his superpower’

‘I don’t know his favorite color. He can’t tell me. I’ve grieved. Imagine not being able to communicate?’: Autism mom describes highs and lows of parenting, ‘He makes me a better me’

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