Labels tend to only mater much to those to whom they are assigned. So, for the first few years of my son’s life, I was just “Mama.” That’s it. Nothing more, nothing less. No special identifier.
Although it became obvious to us around 18 months that our son’s behaviors were not aligned with typical development, it wasn’t until he was four and a half that he was given his first diagnosis–his label: Severe ADHD, Combined Type. And with his label, came mine: Special Needs Mom.
No longer was I just your average parent who did drop-offs and pick-ups, PTO meetings, and Little League. Now I was given a label that was tied to a diagnosis that would later become two and three and now five diagnoses for our seven-year-old ball of untamed wild energy.
That also means I labeled you.
You may have previously been known to me as aunt or friend, fellow church goer or party guest, but now your child is “normal” and you are known as “Neurotypical Mom.”
“Normal” can get a bad rap in mental health circles, so your child’s accomplishments of average proportions are called neurotypical so as not to offend…I’m not sure who really, but it is. So you are a Neurotypical Mom and I am a Special Needs Mom, but unless someone asks us or just notices because you look like you’ve showered recently and I tend to more closely resemble a Skid-Row dumpster fire, no one could tell us apart. Society’s expectations of us–and usually our children–are the same.
So, I want to be honest.
Parenting any kid is so hard it should be illegal in five countries and come with a training program no less than six years long. However, parenting a child with special needs can be this otherworldly brand of terrifying and tired that is only depicted by characters in early ’90s terrorist scare movies about ebola outbreaks.
So here are five things that other Special Needs Mamas like me wish you, our Neurotypical Mama friends, knew about our real lives…even if we are too afraid to ever say it out loud.
I can only speak for myself though the comments from hundreds and hundreds of my readers suggest they share these sentiments. Please hear these words with the care of a friend. They are not easy to say.
1. Our victories don’t look like yours (like, basically ever).
In our house, we’ve had legit dance parties, family celebrations, and full-on victory outings over things like having a day where nothing was broken, choosing to use our words before our hands, being able to accomplish a task from start to finish without a meltdown, and many more.
See, it is likely rare that we will ever know what normal feels like. We don’t usually make it through getting ready to leave the house, enjoying a meal, or even bedtime without a major disruption. That means when we actually do, it is a milestone and we will all but throw confetti and have a trophy engraved.
2. Sometimes we resent you–and that isn’t your fault (or ours).
Our beautifully “normal”-looking child just cussed us out and threw a chair. That isn’t your fault anymore than it’s mine, or his really. He isn’t a problem, but he is HAVING a problem. We do our best to keep it together, but some days are harder than others so when Karen says, “Ugh, my kids are so hard! They just called me ‘mean’ in Target. I was so embarrassed!” I want to shake you and tell you how easy you have it and to hug your kids because they are freaking angels!!
But I don’t. Because everyone’s “hard” doesn’t look the same and that’s okay.
3. We are afraid to ask for help.
Extreme parenting is next-level exhausting. Imagine how tired you were in your first and third trimester of parenting. If that level of tired and the kind when you had a newborn and also a toddler had its own baby, that would only serve to demonstrate a fraction of the amount of exhaustion parenting special needs kids really is each day.
But here’s the thing: we can’t ask just anyone to care for our kids so we can have a date night or practice self care or even take a freaking shower. No. Not only do our kids sometimes struggle extra when we leave, but we don’t exactly have people lining up to help out with the kid who is known to have meltdowns, has more energy than a classroom full of three year olds, or other types of disabilities such as a child who needs tube fed or helped changing.
The top layer to the exhaustion cake with anxiety icing here is that many of our kids take meds and can be–when not adequately cared for–a danger to themselves or others. This might look like the willingness to walk off with a total stranger, wander into the street without noticing, run off in a crowd, have severe allergies–the list is lengthy, friend.
So there is usually a VERY short list of people we trust to keep our kids and we are painfully aware of what we are asking someone when we seek childcare coverage. It makes most of us feel bad putting that weight on someone else and we know leaving our kiddos will likely mean we spend our time away just feeling anxious and guilty.
4. We are worried basically always.
Whether it’s over making the right choices for care, paying for therapies, medicine, and interventions, or anxiety over school, behaviors, and their future, we never stop worrying.
This may be the one parenting trait we have in common with neurotypical parents, except while you worry about whether they’ll be picked last in gym or get asked to the prom by a decent guy, we are wondering if our child will be one of the statistics of higher rates of substance abuse or suicide attempts or who will care for them when they are adults are we get too old to do it ourselves.
Sometimes the weight of all of these worries is to far too much both physically and mentally.
5. Some days we hate it.
Do not confuse this truth with how much we love our kids. No matter what their needs, we fiercely and fearlessly advocate for them, educate others about their differences, and continue to love the hell out of them because they are our kids and we are their allies.
But if we’re putting it all out there, friend, most of us don’t recognize ourselves anymore. We might shower twice a week, we are really freaking tired basically always, and we don’t have many people we talk to honestly about our real struggles so it leaves us feeling isolated and lonely.
The strain in our marriage is mind-numbingly stressful. The average divorce rate remains near 50%, while parents of children with special needs rise close to 80%.
What is so different?
No one chooses this for ourselves or for our children. It is asking you to first grieve the child you thought you’d have and then teach yourself how to love the child you have, exactly how they are–no matter how exhausting, tiring, frustrating, financially draining, or soul crushing it can be some days.
That is the truth.
So you work long hours and keep a job with decent medical coverage because you don’t have a choice in order to properly care for your kids. One of you is always on duty, around the clock, and there are no sick days. You rarely get date nights or even evening conversation because they had night terrors or still wet the bed or need meds at an odd hour. You never take family vacations because even if you could afford it, you have to plan around accommodations, med times, prescription refill dates, weather, sensory exposure…
Friends, it never ends. Ever.
Nothing that our child could ever do or say, not do or not say, could change our unending love for them. But it doesn’t make our journey any less difficult and sometimes downright impossible.
So, neurotypical mama friend, what I am trying to say is we need you.
We need you to fight for our friendship.
We need you to show up with a hot meal.
We need you to come sit with our kiddos long enough for us to wash our hair.
We need you to arrange with our hubs to sneak us away to grab coffee or drink wine and talk.
We need you to listen EVEN IF you don’t totally understand.
We need your support and your prayers.
We freaking need you to show up and keep showing up; invite us even though you know we likely won’t be able to come or would have to cancel last minute because of something at home.
Don’t give up on us, friend.