It’s been ten years since our son Aidan was diagnosed with Autism Spectrum Disorder. Since then, no single thing has impacted our family more. We are defined by our experience as a special needs family. There’s no way around it. There’s been no miraculous story of our child’s recovery. There’s been no “cure.” Just ten trips around the sun as a family on a unique and challenging journey.
Nothing fragile has survived.
All that’s left now, is made to last.
In 2016, my wife Annette and I founded Care For Us, a nonprofit organization that provides free individual and group counseling for caretakers of special needs children. Through our own experiences as special needs parents and in our engagements with countless families on the same walk, we’ve learned some foundational truths about what it takes to live this life without falling apart.
Spoiler alert. It’s not easy.
In an acknowledgment of the journey many of us are on, and the miraculous people we’ve learned from walking it with us, we wanted to share a few things so that others might be able to thrive beyond what the limitation that their unique journeys might allow, if not for a healthy mindset, and a few nudges from those further down the path.
So, here they are. Our 11 Truths of the Special Needs Parenting Journey. 10 is tidier perhaps. But tidy really isn’t our style around here.
1-Acknowledge that this is your journey. You didn’t ask for it, but it’s yours to walk. And it’s going to be a long, long walk. Find comfort in surrendering to the task. Denial only puts distance between you and those who need you to walk it with them.
2-See yourself in the service of others. See yourself in your children. This work is exhausting. If you can’t see the care you give to your children as a form of caring for and honoring yourself, your tank will run dry quickly.
3-Don’t run from the suffering. Cultivate the ability to be with people who are beyond your help. If a cure for what impacts your child is possible, great. Do what you can with what you have to pursue it. But if you secure your fate to a cure, an end through which all your troubles are over, you’re investing everything in a potential child and ignoring the one you have in front of you.
4-Caring for yourself is caring for your children. There are nearly endless obligations to help your children. Most parents if given the choice to invest in care for themselves or care for their children will always choose the latter. Extreme selflessness sounds admirable. Trust me, it’s not. Because hero’s don’t scale. And you’re going to be at this for 60 or so years.
4.1. If you don’t know how or where to start, you can start with us by clicking the link at the top of the page.
5-Seasons of hardship expire. Behaviors rarely last forever. And when they do, your ability to deal with them adjusts to accommodate them. Seeing any given difficulty as temporary is important. Extending periods of acute hardship forward in perpetuity in your mind, will break you faster than anything.
6-Celebrate every bit of progress. No matter how small and no matter how long it takes, take the time to acknowledge the wins. It takes no effort to notice the losses. They’re everywhere in this life. If you aren’t intentional about noticing the wins, they get crowded out.
7-Lift up your partner. Be kind and caring towards those on the journey with you. This life is hard. Let their mistakes slide. Appreciate the effort they give. And find ways even out the load. The life itself needs no assistance pushing people down. So, lift them up. No one else will know how.
8-Make your world as big as you can. Be open an honest with your journey as you are comfortable with being. Lights on, windows open if you can stand it. No one worth anything sees shame in what you’re dealing with. Never forget that this journey, well walked, is an example to others of how to live a purpose driven life. So, find purpose in your example. And fight the urge, at any cost to close in on yourself.
9-Fight the Good fight. Know your rights. Know what’s best for your child. But make a conscious choice to fight FOR things instead of against them. Things rarely change for good by forcing action. Things change for good by eliminating resistance to action. Nothing eliminates resistance like leading people to what right looks like and making it easy for them to follow.
10-Find your faith. Whatever it may be. You have to see your journey as a part of something bigger than yourself. Bigger than those walking it with you. Bigger than your child. None of this started here, with you. And none of it will end with you.
11-Be grateful for every second of it. Be openly, irrationally and vocally grateful for the experience of raising your child. You have to say it before you believe it. You have to believe it before you see it. But the simple act of giving thanks is illogically magical. It’s a universal truth of the human experience.
For more on our story, click the video below. For information about how to connect with or support Care For Us, click the menu above.