The Change: No More Staying Under the Covers

The Change — that’s how the female elders of my youth referred to menopause, often in private, hushed conversations away from men and children. So much mystery and shame surrounded this inevitable and natural function of our bodies that many women entering perimenopause —the years leading up to menstruation finally stopping for good—are dumbfounded by what feels like their bodies going haywire. The same goes for many medical professionals women turn to for help. 

Symptoms can include anxiety, depression, sleep issues, feeling warmer than usual, hot flashes/flushes, headaches, weight gain, fatigue, itchiness, skin changes, irregular periods, spotting, heart racing, brain fog, achy joints, mood swings, night sweats, and more. (Note: I’m a journalist, not a medical professional. Consult with your doctor about any concerns.)

Women are talking much more openly about this phase of their lives now, which is incredibly important, especially because there is very little research about menopause and the “peri” years leading up to it. In fact, 99 percent of studies involving the biology of aging ignore menopause. 

Since hearing the struggles of others in similar situations can be so validating and helpful, I’ll spill the tea on my situation.

I’m a 46-year-old mother of three children, ages 9, 11, and 14. My oldest has Down syndrome, ADHD, and a number of medical complexities. My youngest has ADHD. They are all in various phases of puberty, and I am somewhere in the middle of this years-long hellscape of perimenopause.

It is a whole new kind of challenge. And just as we learn while  advocating for our children with disabilities—we have to blaze our own trail.

Navigating Perimenopause

1. Find the right doctor. We don’t hesitate to get second, third, or more opinions for our children. Do the same for yourself. Find a medical professional who will listen and learn along with you.

2. Be open with those close to you. I explain to my children that I’m essentially going through reverse puberty while they’re going through puberty. When I’m overwhelmed or just need to step away for a moment, I tell my family that. I apologize a lot. And we forgive each other while recognizing it’s hard for all of us to have these extreme ups and downs—home is our safe place.

3. Talk to your peers. Everyone’s symptoms are different. Normalize talking about it. I didn’t realize the sensation of your skin crawling was a symptom of perimenopause until a friend posted about it on social media. The same goes for feeling unloved by those close to you. Bonus: the younger generations listening in will be that much more prepared as they age.

4. Educate yourself. Books like The Menopause Manifesto by Dr. Jen Gunter and Dr. Mary Clair Haver’s blog or Instagram page are great resources.

5. Examine your diet and activity levels. Hydration, adequate-protein, and limiting sugar can do wonders for feeling better, as can simply moving more.

6. Be kind to yourself. This is hard. The female body undergoes so many changes throughout a lifetime. Perimenopause can last a decade or more. It’s hard to prioritize self-care when you have to care for others who are dependent on you, but now is the time to learn.

7. Outsource, ask for help, and/or say no. If you can afford a cleaning or meal service so you can take care of you, do it. If your partner or children can do more, demand it. If you don’t have time to be on another committee, say no!

8.Advocate for yourself. The unfortunate truth is that many doctors know very little about menopause. Now is the time to be as ruthless for your own care as you have been for your child’s.

9. And what about our children? Puberty is no joke, either. Their bodies are growing and changing almost as rapidly as during the baby and toddler years. Thankfully, there are a lot of resources available for adolescents with intellectual and developmental disabilities who are going through their own slew of changes.

Navigating Puberty

Start early. Talking openly about body parts and their functions makes it easier to explain what those body parts do as kids get older.

Avoid cute names for private parts. Get comfortable saying penis, testicles, vulva, vagina, breasts, etc. Think of how important using correct terminology is when seeking medical attention and in abuse prevention. 

Frequently discuss physical and emotional changes early on. Developmental delays rarely delay puberty. It’s important for our kids to understand the changes they’ll start seeing in their bodies.

Privacy! Body autonomy is lacking for many people with disabilities. It shouldn’t be. It’s important to intentionally teach and grant privacy early on, explaining expectations in different settings (home, school, etc.).

Use visual resources and stories. The Adult Down Syndrome Center’s website has printable visuals for nearly any situation, from hygiene to getting your period to changing a tampon.

Books. Thankfully, a decent number of books about puberty are tailored to adolescents with disabilities. Terrie Couwenhoven wrote a “Guide to Growing Up” for boys and girls. My son loved this book. My neurodivergent daughter is slowly working her way through Celebrate Your Body, a body-positive guide for girls ages 8-12 by Sonya Renee Taylor. There’s also a sequel for older girls.

Give space. I sometimes have to remind myself that my son is a teenager. Even if a caregiver is always present, we don’t always need to be in the same room. Let them blast music, be alone, or stay up late –  just like any other teen would.

Communicate with patience. Imagine having limited expressive language skills and suddenly having very adult feelings but still being treated like a kid because of others’ perceptions of you. People still talk to my teenage son like a grade-schooler and wonder why he walks off. If you see this, don’t hesitate to remind others that Jane isn’t a kid anymore.

ABOUT THE AUTHOR: Erin Croyle is a journalist who has worked for National Geographic and Al Jazeera English. She worked in Kuala Lumpur, Malaysia, when her first child, Arlo, was born in 2010. His diagnosis of Down syndrome changed her life. She immediately immersed herself in disability rights advocacy and began using her journalism skills to help the world understand that people with disabilities deserve the same opportunities as everyone else. She is a communications specialist for the Center for Family Involvement at VCU’s Partnership for People with Disabilities. She is the creator and host of the podcast The Odyssey: Parenting. Caregiving. Disability, and nd co-founder of Our Caregiver Life.