Nearly ten years ago now, my husband and I adopted twin boys from Ethiopia. Our biological daughter was two years old at the time, so we were new not only to adoption but also relatively new to the whole parenting thing in general. Those early days, weeks, and months spent together were exhausting, challenging, and beautiful. We learned how to navigate stares and inquiries from strangers, medical and emotional issues, and perhaps most difficult of all, toddlerhood-times-three.
Back then we didn’t really know many other adoptive families, and it wasn’t until we moved to Colorado that we came to be part of an adoption community. There are many families in Denver with transracially adopted children (particularly children adopted from Ethiopia), and thanks to my blog (and the handful of local readers who wanted to meet up with me), these were my first girlfriends east of the Rocky Mountains. We came to spend countless hours together, from playdate picnics at the park to crazy shopping trips winding through the maze that is IKEA. Occasionally we’d ditch the kids and meet up at a restaurant for dinner, where we’d laugh and talk until they kicked us out. These adoptive mothers are some of the most compassionate, loving, brave women I have known. They taught me to question conventional wisdom, to not be content with the status quo, and perhaps best of all, they taught me that no matter what? It’s okay.
It’s okay if your kid poops all over the place, and it’s okay if he or she can’t read yet. It’s okay to have a kid with ADHD and it’s okay when you don’t have it all together. And, it’s okay to get ticked off about all of the above. Within the context of these friendships there was grace, little room for judgment, and an overwhelming sense of acceptance among these women, these mothers raising children from hard places. The only expectation was, simply, to show up. To be human. Nobody had to say “You’re doing your best and you’re doing a great job” because everybody knew that everybody else felt that way, but sometimes you said it anyhow because a mother needed to hear it. Nobody had to feel badly about sharing something hard or frustrating about a child or their parenting journey for fear of their child being judged, because we loved everyone’s kids but also understood how incredibly hard it all was. This was my introduction to much of large family life, and to playdates and “mom friends”, as my daughter calls it.
In 2011, three years after arriving in Denver, my husband and I were received into the Catholic Church. For whatever reason my primary circle of people I spent time with shifted a bit, as I got to know the women in my parish and also in the local Catholic homeschooling community. These women had large families as well, although few had adopted children like I did. My daughters with Down syndrome, also from Ethiopia, joined our family right around this time. Which meant that I was now showing up to our Catholic homeschooling co-op with crying and struggling-to-adjust children. I had to skip an entire unit that year because we were managing their multiple heart surgeries. Thankfully these women (many of whom remain dear friends in spite of the fact that I no longer homeschool) were gracious and kind, and they prayed for us and embraced our family. They brought us meals and invited us over and cared for our other children on long surgery days.
We have been so very blessed, really from the moment we arrived in Denver, to be surrounded by good people. I have many close friends who I can be myself with. I am not in any way isolated, in spite of the many special circumstances regarding my family.
But something I have noticed over the years in general, and something of which I was recently reminded by a friend, is that there tend to be a lot of expectations among young-ish mothers. Maybe especially in the homeschooling community, but elsewhere, too. And when you have a child who is “different” in some way–perhaps a child with special needs or a medical condition, or a child carrying the wounds from a traumatic past–there is always the potential to feel, and then become, extremely isolated.
Because all of a sudden your primary concerns aren’t so much what everyone else’s seem to be. Finding the perfect Easter ensemble for your perfectly posed kids, or the ideal Latin primer for your Charlotte-Mason-themed homeschool? Forget about it. You’re too busy frantically googling life expectancy rates or what a typical “prognosis” is for a syndrome you hadn’t heard of before yesterday, or trying to navigate early intervention or the IEP process, all while juggling therapies and maybe an inconsolable child. Or two. Not to mention your other kids, because they don’t cease to exist simply on account of having a sibling with unique circumstances. And they, too, are impacted by all of the things happening in your home.
One of my adopted daughters still couldn’t eat solid foods when she joined our family at two years old. She also couldn’t walk, crawl, or talk. Although she can do all of those things now, she is a perpetually sensory seeking child and navigates the world the best she knows how, which is admittedly better on some days than others. Her older sister has had an easier go of it overall but, like all children with Down syndrome, she has her challenges too. I have received phone calls from a school principal threatening to terminate my daughter’s bus service if she wouldn’t learn to cooperate better in the afternoons, and I have received a phone call from a teacher because another daughter had a complete and utter breakdown at school. Then I had to face all of these people at an IEP meeting for two and a half hours, and answer ridiculous questions about whether or not they play with puzzles at home. Ummm, I know it’s good for fine motor development but, um, I don’t really like puzzles because they make a huge mess and my kids lose the pieces. I have also had to explain (and apologize) to an upset parent why sometimes one of my daughters plays a bit too roughly. Yes, it was embarrassing and yes, it was awkward.
The hard truth about all of this is that not everyone understands, or necessarily wants to understand. Not everyone can fathom a universe that isn’t perfectly ordered, or a family raising a child who appears to be training for the Worldwide Wrestling Federation. She’s learning. She’s come so far. She’s overstimulated and overtired. She’s sorry. We’re doing our most very best. She doesn’t fully understand. I won’t let it happen again. She has Down syndrome.
Humble pie. All kinds of it. Being served here on a semi-regular basis.
And you know, I guess I can’t blame anyone too much for not getting it because I also have children who pull down straight A’s with minimal effort, who excel in sports, who are popular with friends and teachers and coaches alike. These children made homeschooling seem easy and, had they been my only children, would have had me fully convinced that this whole parenting thing is a piece of cake. That kids and their behavior are not so very difficult to manage. That I am a Very Good Mother because, well, Look At My Kids.
But that is not my family’s reality. We are, instead, Lifetime Members of an exclusive club where children and families are hurting and struggling. Where behaviors and relationships are predictable only in their unpredictability, and where hard stuff happens that doesn’t necessarily happen to other people. We know adoptive families where children suffer from serious and complex mental illnesses, and we know families in the special needs community who mourn the loss of normalcy as they wonder if they have what it takes to continue fighting and advocating and loving every single day. I’d say the one thing these families all have in common is the ongoing struggle to find acceptance in their respective communities–churches, schools, and neighborhoods. They’re not looking for special treatment, but for friendship. Affirmation. Inclusivity.
What does that look like? Well, I think it looks a whole lot like that adoption community we once belonged to, or like much of my parish community. (Not the grouchy old man, though, who scolded my developmentally disabled daughter for not being able to recite the rosary on command. That was really mean, and had I been around, we would have had some words.) I can honestly remember times spent with my fellow adoptive mama friends when a child would accidentally hurt another child, or when an angry toddler would rage and shout and yell curse words at his foster mom. These occasions were rare, but did happen. And when they did, there was support and empathy. We knew we were doing the hard, long work of parenting hurting kids. We had front row seats to the messy business of life. We had high standards for behavior but we also knew that brain function and past abuse and prior neglect leave their mark. And, we had been sufficiently humbled by this fact from the moment we had become adoptive and/or foster mothers.
Recently during a conversation with a close friend, as she spoke candidly about isolation, I remembered back to the glorious sort of environment the adoption community was to raise kids in. I thought about how stressful it is, instead, when your kids are doing weird stuff and people are like Why are those kids doing weird stuff? Your friend at the gym may not understand why you’re investing a ton of time in therapies for a three-month-old, or why it’s just too stressful for you to attend the social gatherings you used to attend. If you were a homeschooler before, maybe now you’re considering school, and people really don’t get that either. Self-care and sanity preservation take on a whole new meaning when you’re raising special children with special circumstances.
And so I think about this when my six-year-old is rocking and sucking/chewing on her thumb all through the Mass, or when my eleven-year-old is struggling to complete a school project on account of his executive functioning issues. In so many ways I’m just like pretty much any other mom, but I know that my reality is very, very different. And I’m really playing this whole thing by ear, a la the trial and error method, which I’ve made total peace with. I tell my kids to do their best. I take lots and lots of deep breaths. I tell myself I am doing my best. I instruct and encourage and correct and occasionally lose my temper, but in my most sane and lucid moments as a mother I can see good things in my family.
I see siblings who are (for the most part!) patient, kind, and accepting. Who know first-hand that we all have different gifts and abilities, who take pride in helping a sister or brother who struggles to do the very things they take for granted. Unlike many parents to kids with special needs, I more or less chose this life, but when you make that choice you don’t know all it will entail or what it will eventually mean. But then who does, for that matter? I am probably the least likely candidate on the face of the earth to be raising a large family, or to have multiple children with developmental delays. I am selfish, impatient, and I love me a clean house. Also, I don’t really like to cook.
But, here I am. I don’t know the future, but I’m showing up. In my big van, and with a lot of diapers.
So, please, let’s work towards building an inclusive community that is a safe space for mothers raising special children. It’s not just moms to adopted kids or children born with chromosome disorders who are starving for companionship, either–all kinds of women are facing a potentially isolating circumstance in their family, whether it’s divorce or financial woes or a child’s destructive choices. And if you are one of those mothers, will you do yourself a favor? Surround yourself with accepting and compassionate women who will love you and your child no matter what. If you have to go outside of your present circle of friends to do that, so be it. Find ladies that make you laugh, like to get out of the house for an occasional girls’ night, and aren’t easily scandalized.
Find people who believe in you and in your family.
The truth is that at some point most folks (even the pretty shiny ones, whose kids don’t poop their pants at the store after the acceptable age for that) do come face to face with the grittiness of life, it’s just that you and I are seeing it right the heck now. Perhaps in some ways, that’s a gift. Or not. But in either case, raising special kids is no reason to be isolated. Every child is different, and precious, and worth it.
And you are a Very Good Mom. Because Look At Your Kids.