Special Needs Mom Life
“Being a special needs mom is like living in two different worlds at the same time in a couple of different ways. One is that I’m aware of my blessings more than most people are. When you deal with adversity countless times a day, you have the chance to gain a lot of perspectives and develop a deep sense of gratitude for the simple things in life most people take for granted.
Another way it’s like two different worlds are this; I exist in the regular world with other people and families around us, but then I also exist in my world where one child’s needs dictate and affect every.single.thing. About me, my marriage, my other kids, my relationships with people outside our house … just everything.
Our special needs world is expected to fit with the regular world around us, but the truth is it rarely does. Nobody understands except for other families that have kiddos like yours, and even then there are vast differences that often make it hard to completely relate. Dylan is 15 years old and can’t talk. She wears diapers 24/7 because she can’t reliably tell us when she needs to go to the bathroom.
Language comprehension-wise she’s at about a 5-6-year-old level. Meaning she understands us the way a 5-year-old would. But she has no concept of danger or causing harm to herself or others, so she has to be watched every waking moment. She won’t sleep alone at night, so my husband and I take turns sleeping with her.
Listing these things off makes me feel like I’m only talking about the hard stuff, the challenges when there is so much beauty to our life too. But the truth is – it’s hard, but it’s just our reality, we’re used to it. It keeps our family from doing a lot of things ‘normal’ families do, but it is what it is and we’ve gotten used to it.
But it can be isolating and I constantly worry about how our other 2 daughters have been impacted by the limitations on our family because of Dylan. So then I just try to focus on the good things they’re hopefully gaining by having a sister with special needs, such as a greater sense of empathy, responsibility, compassion, acceptance, etc.
Relying On Alcohol
From the time Dylan was a toddler, wine was a normal part of my ‘special needs mom’ life. Anytime a group of us moms that had kids with special needs got together, drinking was involved. We always joked that getting together to drink was cheaper than therapy. Over the years, I slowly started to drink more at home, having a glass of wine while making dinner or a couple after the kids went to bed when my husband and I could sit down together to relax.
When Dylan was about 7, I started my own business, working from home, and it grew rather quickly. At the time, we had an aide for Dylan who came into our home about 30 hours a week, so I could work, focus on the other girls, etc. But it was around this time I also started drinking more at night when I’d stay up late working after everyone else went to bed.
A couple of years before Covid, I knew I was drinking too much. I was under a lot of pressure in my business and then we lost our full-time aide for Dylan. I went from dedicated help for her 32 hours a week to none. But I was still working (from home) and we relied on being a 2-income household, so I knew I couldn’t let my work slide.
I slowly started drinking more and more at night to keep all the plates spinning. One glass turned into a few, turned into a bottle a night, and then became a bottle and a half most nights. I was a stay-at-home mom, special needs mom, homeschool mom, and work-from-home mom.
Looking back, it’s easy to see that what I expected from myself (and thereby allowed my family to expect from me) was completely unrealistic. No one person could be all those things all the time. But I felt like I had to be and I wanted to be (most of the time), so I drank to drown out the exhaustion and stress.
Over time I found I couldn’t go a day or two without a drink, and that’s when I knew I had a problem but I couldn’t see a way out. I existed in this limbo for a couple of years, and then Covid hit. The weight of the world, combined with no help for Dylan again for months, is when I started hiding my drinking. I knew I should quit but I couldn’t fathom doing it now, so I just started hiding it from my husband.
I’d stash bottles in my home office so no one would know how much wine was actually in the house. Then I’d sneak the empties into the garage or recycling after he’d leave for work in the morning. Obviously, I knew this wasn’t healthy behavior, but I could always justify it with all the craziness I had to deal with every day, especially now with the weight of the Covid world on top of it all.
To the outside world, I was doing everything right – happy kids, happy marriage, successful business – so what if it took the wine to make it all happen?
Drinking helped me do all the things that were expected of me. I had healthy dinner on the table most nights and business calls a few evenings a week (by which time I was usually exhausted and did not want to be on, but I ‘had to’ so my business would keep growing).
I was a hands-on mom to all 3 of my daughters, dealing with the chaos of Dylan that could pop up at any time (diaper leaking requiring a change of clothes, getting into something she wasn’t supposed to, needing a separate dinner than the rest of us, just to name a few). I would try to be in a good mood when my husband got home from work.
‘Mommy needs wine,’ was/is so socially accepted that I relied on it to keep my head above water. Even when it physically started to cause problems – visible weight gain, headaches every morning, upset stomach some days, red puffy face, not to mention the emotional roller coaster day in and day out – I still drank most nights. It became part of who I was and how I did all the things.
It never occurred to me to question whether ‘all the things’ were way too much for one person and one day. And it didn’t occur to me that alcohol was making everything harder than it would be otherwise. It wasn’t until my husband casually started to suggest I cut back that I realized how much I was drinking.
I realized I could continue to let Dylan be my excuse for drinking, or I could let her be the reason I finally quit.
I had a choice to make – let the stress that comes with Dylan be my excuse for drinking, or let it be the reason I grow and do better. I had to choose to be better, not just for her but for me too.
And the irony is that everything has become more manageable since I removed alcohol from my life. My anxiety and depression improved dramatically, making my ability to cope with stress so much better. I no longer feel like I’m on this manic roller coaster of either counting my blessings or crying on the kitchen floor at 2 a.m. over how unfair life is.
Yes, life is still unfair, but when my brain isn’t on drugs, I don’t feel like I’m suffocating from the weight of my responsibilities. I can keep a realistic perspective, manage my emotions, and most importantly ask for the help and support Dylan and I need, rather than self-medicate with wine and hope for the best. Alcohol kept me stuck in a loop of just trying to survive life, instead of finding a way for both of us – and our whole family to thrive.
Quitting drinking hasn’t magically made the stress of my life disappear. Dylan still doesn’t sleep great. She’s in diapers 24/7… nothing fun about having a 15-year-old in diapers.
Her limited ability to communicate is something I’m so used to but can bring me to my knees at any given moment. I just wish she could tell me exactly what she’s thinking or what she needs.
But now that I’m not stuck in the vicious cycle of drink-hungover-shame-regret-guilt-try-to-drink-less-hide-it-all-etc…. I can show up better for her and me. It doesn’t feel like the sky is falling anymore. I operate from a place of calm, peace, and contentedness now and it truly makes everything about my life so so much better.
Looking back, it’s obvious to me how strong of a drug alcohol truly is. How much it messes with our brain chemistry and hijacks our emotions. It’s an addictive substance, so it’s no wonder so many of us become addicted without even realizing it’s happening. And by the time we do start to realize it, it’s almost impossible to stop drinking without help.
I tried to ‘quit’ drinking 3 times over the last 3 years, plus countless other times of trying to control or moderate my drinking. None of them worked because I felt like I had to quit, not because I truly believed my life would be better without alcohol. I was always trying to do it myself – I didn’t want to admit I had a real problem, so of course, I didn’t need help. Lying to myself like that kept me stuck for years.
This past summer I realized I had to get honest with myself and get help. I was getting worried about my health, and honestly the lying and hiding my drinking was just so exhausting, I couldn’t do it anymore.
I told my husband I needed help and wanted to invest in a sober coaching program, and that was that. I knew if I put money on the line I’d put in the work, and I was right.
I’ve been sober 3 months now and I can’t imagine going back to drinking. All of my beliefs about alcohol have completely changed and I truly no longer want to drink.
Of course, I have bad days where I have a craving or something, but now I have the tools and community to work through it. I have never regretted not drinking. I feel better, emotionally and mentally, than I have in probably 7 years and my physical health is improving every day.
My only regret is not getting sober sooner. For Dylan and myself. Everything about our family life is improving because I’ve taken alcohol out of the equation.”
Read more stories like this:
‘You need help.’ I got her from preschool, pulled over ‘to rest,’ and woke with officers knocking on my window.’: Mom of 4 finally gets sober after being institutionalized over 20 times, learns she is ‘not alone’
Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.