On good days, my daughter's differences are invisible. She seems like a cheerful, quirky, kind 8-year-old, and she totally is all of those things. On bad days, though, she's a different kid. If you see us, you might wonder why a child her age is still throwing tantrums, biting her siblings, making loud noises, blinking, or repeatedly using the "f" word. Most of the time I try not to lose my sh*t, but I have so many questions for the mom who raises special needs kids with such grace. Mainly, how do you do it? Because, honestly, I constantly feel like I'm flailing.
I hesitate to ask these questions, though, because I know that we don't have things nearly as bad as other families, and I know these parents have a lot on your plate. For the most part, my daughter is healthy, and my partner and I are able to get through each meltdown, meal time, and bedtime struggle, relatively unscathed. I feel weird voicing my difficulties, knowing how privileged we are, but at the same time, I need support, ideas, and some friends who've been there and get what it's like to have kids who experience life differently.
When my daughter turned 3, she changed from a typical toddler into a sad, angry "threenager" who threw violent tantrums when things didn't go her way. Her doctor said that she was adjusting to our move to a new home and the birth of her brother, but something just seemed off. When she was 4, I left her dad. She became so hard to manage, especially for a single mom with two kids and only two hands. Again, her doctor said these were "normal" responses to change. I wish he could have come to our house at bedtime or when I struggled to get her dressed in the morning. When she started school, it was clear to more people than just me that she needed help, which was validating, but also made me feel like I had failed.
It took my partner and I years to get a diagnosis for her. It was a relief to finally know the "why" behind her behavior and challenges. We learned that her trifecta of conditions — Attention Deficit Hyperactivity Disorder (ADHD), Tourette Syndrome, Obsessive Compulsive Disorder (OCD) — frequently occur together, but can be hard to treat, because the treatment for one condition can worsen another. Getting any child to swallow daily medications can be a challenge, let alone one who is often violent and defiant. It seems like whenever I find a strategy that works, she changes her mind,or something happens to make me feel like a total failure. So yeah, I have some questions for other moms who seem to manage, when I can't seem to catch a break.
"How Do You Not Lose Your Sh*t?"
For me, it feels like every day is a new set of challenges — another tantrum, a call from school, a skipped dose of medicine, a judgmental stare, a kid that's hurting, or who hurts other people. How the hell do you get through it without losing your sh*t? I feel like I am always moments away from losing my temper or crying in the bathroom. I wonder if it will get better with time, or I will just stop caring.
"Does It Hurt To See Other Families?"
Do you get jealous when you see other kids your kid's age? I know I can't help but envy the parents with kids who can make it through a meal without a fight or who post about their kid's accomplishments online. I wish I could just be happy for them, but it's so hard when their lives seem so much easier than ours.
"How Do You Manage It All?"
Like seriously, you have mad skills. If I thought you had enough time, I would ask you to mentor me. In our house, every day feels like an uphill battle, with a full schedule from wake-up to bedtime that has so many challenges, deadlines, appointments, and possible bumps in the road in between. Something falls through the cracks every single day.
"Do You Wish They Were Different?"
Do you wish you kids were "typical?" Sometimes I do, which makes me so ashamed. At the same time I wonder if the things that make my daughter awesome would still be here if her brain worked differently. Would she still be creative and quirky? Would she still love the same things? Would she be her? While I wish she didn't have to struggle and experience such huge emotions and frustrations, I can't stand the idea that she wouldn't be herself without her differences.
"Are You Afraid?"
Are you scared? I'm freaking terrified. At 8, my daughter has experienced mean kids, unkind teachers, and a world that largely expects her to fit her glorious star-shaped self into a tight round hole that's not big for her to shine. I am afraid every day when she gets on the bus (or in the car, because she had a hard morning and didn't make it to the bus stop on time) about what might happen when I can't be there. Her doctors say she may grow out of her challenges, but I worry about her future, too, in a world that often demands conformity.
"What About You?"
So, yeah, people say all of the time how self care should be a priority, but who has the time? Some days, my self care is locking myself in my bedroom, while my husband handles homework or mealtime, and then I feel terrible for abandoning him. Having a special needs kid has put a strain on our relationship and our relationship with our other kids.
"Want To Be Friends?"
Seriously, I could use a friend, and I really admire you. I understand how hard it is to invest time and energy into friendships, though, when you have a lot on your plate and are barely holding things together. So, I can totally be the friend who sits in silence next to you, while we both enjoy the quiet, or brings you Starbucks and leaves it on your front porch, or understands when you cancel at the last minute. I get it, and I won't take it personally. I promise.