“Friend, we need to begin with the disclaimer that there is no parenting contest. We aren’t trying to participate in some jacked up motherhood one upper competition. All parents struggle sometimes. Every mom gets totally worn out. We’ve all had weeks where we survive on coffee and dry shampoo alone.
However, it is an important part of connection to begin to understand each other and our individual struggles. As we allow ourselves to become vulnerable and we let each other into our dark and cob-webby places, we can support and encourage each other in the specific ways we desperately need.
Regular weeks for neurotypical moms are rough–school drop off, PTO meeting, soccer practice, pack lunches, run kids to baseball tryouts, and back in time for church. No wonder we are so tired!
A typical week for a special needs parent is likely filled with appointments–doctors, therapists, specialists, counselors, groups, IEP meetings, tutoring–and then there are med appointments and pick-ups, typical school and extracurricular times, and the constant battles with lying, behaviors, siblings, bath time, bed time, meal times, and more. There are arguments over discipline strategies, unsolicited advice from perfect strangers, and input from family and friends who mean well and cannot see that their opinions can actually be hurtful. All of this comes in a barrage of hits we cannot defend against because we haven’t slept in days.
So when you ask a special needs parent how they’ve been and they roll their eyes, yawn, and say, ‘Eh, it’s been rough, honestly,’ first be thankful that they trust you enough to be honest, and secondly please know what this looks like for them.
A rough week for a parent raising a child with invisible disabilities, behaviors, or extra physical needs is likely a level of extreme exhaustion experienced only by war-trained soldiers and people in concentration camps.
Our hard days look like night terrors, bed-wetting, and sleepless nights.
They look like meds not working properly, refusal to eat anything at all or anything outside of one or two foods that our sensory sensitive kiddos have deemed acceptable.
The days are riddled with meltdowns over everything from being left out at school to having their favorite cereal bar company’s packaging change or having to be outside where it’s too hot or too cold or too sunny or too many bugs or too ‘outsidey’. Seriously. We can’t make this stuff up.
We may have struggled to overcome a therapy goal, dealt with a physical trauma like difficulty swallowing, aspirating, being nonverbal, or having aggressive rage outbursts.
It is likely that, by Tuesday, a parent of a child who struggles behaviorally has been yelled at, kicked, punched, and spit on. They’ve picked up pieces of things that were thrown or broken in the wake of an epic meltdown.
Here is what you should know, sweet friend. We love you and your kids, no matter if they are similar to ours or not. We don’t want you to hide victories or milestones. We want to celebrate them with you and your awesome kiddos.
Don’t be afraid to send us birthday invites, graduation or prom photos because we are so excited for you. Sincerely.
Just please know that our wins might not look the same. Our struggles are certainly different. And we will likely never reach out and ask for help.
It might be our pride or that we feel guilty. It could be that we are wrestling with feeling like we are failing our children because we can’t take their struggles away. It may be that we are worried how they’ll act if we ask someone else for help.
So please, sit with us. Text us. Stop by and insist on taking our kids for the day because I promise we won’t ask for help. But mama, we need it; to eat, to sleep, to drink coffee while it’s still hot, and catch up on the mountains of laundry. We need a day to walk around Target, read a book, or binge watch a full season on Netflix because that is what normal women do, we don’t feel anywhere near normal most days.
We would never downplay your hard days or bad weeks because we love you. But we hope you can see a little inside our world so that you can begin to understand the gravity of what our day to day looks like. And, if you have been wondering how you can help, know that it is simple. Show up. Keep showing up. And offer to give us even an hour of relief because that simple break can be a total game changer for us.”
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