Dearest Mamas,
Maybe you’re reading this letter because you saw “invisible disabilities” and immediately knew this letter was written for you. Maybe your kid doesn’t have a diagnosis, but nothing about parenting them has ever felt easy or “normal.” Maybe you’ve never heard the term and are simply curious. But what does this look like?
It can look like major and seemingly never-ending sleep issues – sleep regression during infancy and the toddler years are nightmarish, and then the “sleep regressions” – that you thought you’d be done with after the toddler years – just…never…end.
It can look like very big feelings All The Time—feelings as big as an eclipse when it blocks out every ray of sunlight, and it just seems like darkness and chaos forever.
It can look like cycling worry and fear. Some of the time, your kiddo seems like the bravest, strongest, fiercest kid ever. So you forget about the anxiety that is there, always lying in wait, until it’s so front and center you can’t believe you allowed yourself to wonder if you’ve just been “making too big of a deal” out of it.
It can look like “laziness”. You know your kiddo is *so smart*, but they never seem interested in studying and don’t turn in their homework on time or even at all, and their grades are Okay but not great. And sometimes, they are wrapped up in so much shame that it feels impossible to withstand. But at other times, it seems like it doesn’t bother them in the least.
It can look like being out in the world and doing pretty Ok, maybe even great! Hearing from grandparents, teachers, and friends’ parents about how sweet, kind, and polite your child is, but at home, it’s an entirely different story. The meltdowns, the rudeness, the aggression, the disrespect…it all gets reserved for you.
And all of it makes you wonder what you’re doing wrong. You try so hard, and you’re working to be different from the generations before you. You read books, listen to podcasts, and/or follow social media accounts about parenting. You think about your kids All The Time and how to do right by them. And you’re not perfect, but you know you have a good relationship with your kiddo…and still. It’s rarely easy. Making it to the end of every day feels exhausting. You see other families and your Mom friends, and it doesn’t seem as challenging for them.
You watch them tell their kids it’s time to leave a play date, and they just put on their shoes and coats and leave.
You watch them disappear upstairs to put their kids to bed, and they come down 5 minutes later.
You see these kids eating different foods and able to order off any menu seemingly without any drama.
These families are involved in one hundred different activities, and everyone seems to enjoy them rather than feel overwhelmed by them.
At special events, these families allow their kids to stay up late, way past their bedtime, and somehow, there aren’t epic meltdowns when it’s time to say goodnight.
These Moms…they seem relaxed. Rested even. Relatively happy. Sure, they have their day-to-day gripes, but they most certainly do not seem like they are on the verge of tears or rage.
And all of it is so bewildering. “How??” you think. What’s the secret? What are they doing that I’m not? Why can’t we be like THEM?
And here’s the answer: because your family is not like them. It’s just not. And that can be true for a million different reasons. Maybe your kiddo has anxiety, ADHD, depression, or Autism. Maybe your kiddo has a learning disability, OCD, or is just highly sensitive. It doesn’t matter what exactly “it” is. It doesn’t matter because regardless of the label we may or may not attach to what is going on with your kiddo, your kiddo is different. Your family IS different. And different isn’t bad. Just sit with that idea for a second. Breathe and take it in. It’s Ok to have big feelings about that. If tears are welling up, let them fall. Your grief, your pride, your fear…it all makes sense. It’s important to feel it. Your feelings don’t mean that you want a different kid. AND it’s also Ok to mourn the picture in your head of what you thought motherhood would be because your reality is not the fantasy that you had. It’s Ok, even necessary, to let yourself grieve that. Come back to this if you have to. But do come back because…
…there is so much good news. You feel all of this because the world has told us that our kids are wrong. And that because they are wrong, WE must be wrong. Our kids aren’t falling in line so we must be fucking something up. But that’s BULLSHIT. Our kids are AMAZING. They are not the problem. WE are not the problem. The systems are the problem.
The academic system is not built for kids with invisible disabilities. It focuses on grades and productivity and scores on standardized tests, and none of that shit reflects our children’s brilliance and strengths.
The healthcare system is not built for kids with invisible disabilities (or ANY disability, for that matter). It focuses on symptoms and symptom management, and everything is siloed – nothing connected or integrated – so we deal with issue after issue, never getting to the root of the problem, never knowing how it all fits together, never knowing quite how to help others than what medications we can give.
The childcare system simply does not exist, at least not in an affordable and sustainable way. Sure, there are daycare centers and after-school programs, but these are band-aids and don’t offer us what we really need—a village of people who deeply understand and support us and our children.
The mental health system is impossible to navigate even IF you can afford to do so. Finding therapists, neuropsychologists, and/or prescribers who are accepting new clients, take your insurance, have your availability, and truly understand your family’s needs is a joke.
All the challenges we face daily, combined with the barriers to competent care and support, make us feel alone, exhausted, and broken. But what if we didn’t need solutions…just community? Solidarity? Understanding? Someone who gets it to hold our hand the whole way through?
Mama, I see you. I see how weary you are…and I also see your strength. I see your fierce, never-ending, unconditional love, even on the hardest days.
Mama, I hear you. I hear the edge in your voice…and I also hear the patience. I hear how hard you’re trying. I hear how much you are trying to give your kiddos what they need.
Mama, I BELIEVE YOU. I believe how hard it is even when your kids seem like they’re doing great to the outside world. I believe how painful it is when your kid is struggling, and the world doesn’t understand. I believe that school can be a nightmare even when the teachers tell you that everything is just fine. I believe that your kiddo has a bunch of uncomfortable feelings, pains, and tension in their body even when the doctors tell you nothing is wrong. I believe you that something is going on with your kiddo even if you can’t seem to get a diagnosis or currently don’t have access to those resources. I believe you.
Parenting is always hard – no matter what – and having a family with disabled kids is extra hard. And while that fact sometimes makes us or our kids feel weird, I believe it also makes us LUCKY. Because we get to see the entire world in a whole new way because of our beautifully different babies.
Sending you so much love, patience, and strength,
Dr. Colleen Cira
Mom to two disabled and REMARKABLE kids
