I know. We all hate it when people make sweeping generalizations. But these are the kind I think you will enjoy.
A little over 15 years ago, after the birth of my second child, I was plunged into a crowd of parents that stand out from the rest. Initially, I looked at the things they lived with every day and wanted to run as fast as I could in the other direction. In fact, when our son was only a month old we attended our first “family retreat,” and I spent the first night in the bath tub in tears, sobbing over my stunning new reality.
All these years later, I can tell you that I have been richly blessed by the company of countless other parents who walk the same journey. They seem to share common qualities that make me love them collectively. There’s no better time than Special-Needs Parents Appreciation Month to share with you what I love about special needs parents.
THEY ARE RELENTLESS. This bunch may feel like quitting multiple times per day, but parents raising complex kids will keep going even if they have to claw their way along, inch by inch. They may get knocked down by surprised complications to their child’s diagnosis, but they get up again. They may have trouble with the team at school, but they will not give up until their child’s educational needs are met. They may lock horns with the medical staff, but they will not stop until they are certain their child is receiving the proper care and treatment. Persistence is their habit.
THEY ARE DILIGENT RESEARCHERS AND CRITICAL THINKERS. Is a treatment suspect? This crowd knows how to do their homework. Are there newer and better therapies available? These moms and dads know how to find them. If there are any questions in these parents’ minds, they are motivated to find answers. Whether it be digging on the internet or speaking to fellow parents, those raising children with challenges are notorious for reading books, articles, attending conferences, and networking with whoever can lead them to the knowledge they seek.
THEY ARE ADAPTIVE. Most of the special needs parenting world is comprised of individuals who ended up in a place where they never thought they would find themselves. Life took them by surprise. The unthinkable happened. Even so, these people pick themselves up, dust themselves off, and learn how to adjust to a different life plan. They proudly wear the new badge of triage nurse, occupational therapist, or behavior intervention specialist in their own homes. New ways of traveling, shopping, eating, and socializing are only a few of the exhibitions of their personal flexibility.
THEY ARE GENEROUS. Because they know what it is like to be in a place of need themselves, these parents won’t hesitate to lend a helping hand. Setting aside their own hopes, goals, and dreams to ensure their child reaches their full potential is far more self-sacrificial than that of the average sports dad or pageant mom. While lack of self-care seems to be a hallmark of this bunch, the flip side is that they are incredibly generous with the little time they can eke out, the few dollars they can spare, a kind word of encouragement, or a bit of knowledge they gained through the School of Hard Knocks.
THEY ARE PASSIONATE IN THEIR BELIEFS. Right or wrong, they are unwavering on their personal positions. While they can sometimes turn on those in their own crowd who have opposing points of view, their stiff spines are refreshing in a world where much seems to be wishy-washy and relative. Whether it’s the anti-vacc crowd, the gluten-free/paleo believers, or the gene therapy dreamers, these parents know what they have witnessed in their own homes and what information makes sense to them. They are fully ready to explain to you why they believe what they believe. Amazing!
THEY ARE WELCOMING. Oh, I will freely admit what a snob I used to be. Raising challenged children freed me of that quickly! The common bonds and deep desire to end the painful isolation make parents like us a warm, welcoming crowd. Yes, there can be cliques among diagnoses, but that’s only because of the laser focus on concern for personal circumstances. Generally speaking, I witness so many parents surprised by the warm greeting and acceptance they receive when they are willing to make themselves vulnerable, opening up to fellow special needs moms and dads. No need to feel like the world’s worst parent with this crowd when your 10 year old is still having “brown-outs” or you missed your child’s 1 AM dose of insulin.
THEY ARE INNOVATIVE. You haven’t seen necessity being the mother of invention until you see the things these parents have created! Many parent-innovations are publicly available like Caroline’s Cart (http://www.carolinescart.com/), Kid Companions (http://kidcompanions.com/), and If I Need Help (https://ifineedhelp.org/). But many more are created in the home in a completely un-sexy manor like the fiberglass-and-duct-tape brace my son straps on to hold his arm steady when he self-infuses. Parents raising complex kids give new meaning to the idiom, “Where there’s a will, there’s a way!”
THEY DON’T MAJOR IN LIFE’S MINORS. I was just recalling to a fellow community advocate a situation where I had to step between two women outside of the community who were quarreling about the most petty of situations. Parents like us just don’t have time for that. If a mom or dad with a kid who has a diagnosis brings up an issue to the school, a doctor, a neighbor, or a family member, you can be sure it isn’t minor. It may seem minor to the typical world, but they just don’t realize that small adjustments can make a HUGE difference in the life of our kids. Meanwhile, you will find these caregivers holding onto few tiny irritations like your improper grammar or the fact that you are running 15 minutes late.
THEY LOVE WITH FIERCE DEDICATION. Most parents love their children. Ask any school principal, and they will tell you about how mothers and fathers keep them hopping. At the same time, there is this an unspoken, intense, commitment unlike any other with people raising offspring with a disability, chronic illness, or special need. The way these caregivers look at their kids tell you everything you need to know. Sure they get worn out and impatient just like any other parent. Yet there’s not that same “don’t know, don’t care,” attitude that can too easily creep in with our typical kids. These caregivers have the deepest sort of unconditional love one can possess for a family member.
THEY HAVE A WICKED SENSE OF HUMOR. Just walk the other way if you can’t handle a little grossness or temporary insanity! These parents shrink the power that their difficulties have over them by laughing right in pain’s face. Gallows humor gets them through, so don’t be so quick to call protective services when they make jokes about duct tape. This is my favorite, favorite thing about parents walking the same journey as myself. Yes, we spend plenty of hours advising and comforting one another through weak, wounded tears. But we spend far more time laughing from the tips of our toes over life’s inanity.
I wouldn’t trade these parents for the world! I am so grateful that one of them had the presence of mind and kindness of heart to conjure up this long overdue celebration. If ever there was a group worthy of boundless appreciation, it is parents raising beautiful, complex kids!
Barb Dittrich is the executive director of Snappin’ Ministries, which gives special care to special care givers. With a unique vision for serving parents of children with special needs, she has led the SNAPPIN’ MINISTRIES team in developing an innovative parent mentor curriculum. She has lives with her husband of 20+ years in Wisconsin and blogs at Comfort in the Midst of Chaos.