Why You Need Your Tribe as a Special Needs Parent

We hosted a New Year’s Eve gathering. Sounds fancy, yes? You’re picturing canapes and sparkling wine and bacon-wrapped things and the countdown and shiny dresses. Let me re-phrase. We had two friends over…for lunch. The lunch was pizza and not the fancy kind. This was the kind you find wedged between the nail salon and grocery store. It was one step up from a Hot ‘n Ready from Little Caesar’s.

Outings to restaurants with a wheelchair and toddler twins is not my version of fun. It’s what the kids call one of mommy’s adventures. Apparently I’ve started naming anything out of the ordinary and exhausting an “adventure.” Am I creating an inappropriate Pavlovian response? Like dogs and the vet? Regardless, we don’t go out to eat much. Food comes to us. And we like it that way for now. Containing and restraining the chaos.

Maybe it was just the red pepper clearing my brain, but I got to thinking about this circle of ours. It’s important as a parent of a child with special needs (or any human really) to build your tribe. You need your people. The ones you can rely on to help without question, to offer an ear without judgment, but also to call you to account if need be, and who “get” your family and how it works. If you try to sail the ship alone, you’ll drown.

For us, that’s the couple we had over, actually Charlie’s primary care nurse when he was in the NICU and her husband. We have rung in New Year’s, Thanksgiving, Fourth of July, all four of our birthdays for two years running and countless ordinary days in between. We have drunk wine on a vineyard and walked the neighborhood streets while suctioning Charlie’s trach. They have met us at the hospital when he was carted off by ambulance after an especially bad seizure. They will always be there and they don’t care what I wear. That’s a win.

Slap happy at getting to see each other.

 

 

 

 

 

 

 

 

 

It’s also Charlie’s Sunday school family. Our church designed an entire special needs ministry around him. That’s love. He has a trained buddy assigned to him who understands the animal crackers have to be broken into tiny pieces so he’ll chew but also that he needs to participate with the other kids and get out of his wheelchair and on the floor. The ability to sit with Jody for an hour in church and know that our kids are safe and happy and terrorizing someone else is magical.

It’s also our families, my mother who lives .4 miles away (not that I’m counting) and perhaps has more energy and patience than me. It’s my dad who, despite wearing his retired scrubs to my house because of the snot and general stickiness, gets down and lets them crawl all over him and always take the time to stretch Charlie. It’s Jody’s parents who will often make the three hour drive to our home and back in one day when we need extra hands or just because they love their grandkids.

The epic school picnic.

 

 

 

 

 

 

 

 

 

It’s Charlie’s school, a special needs inclusion wonderland. He has been attending since he was two and would not be as social and well-adjusted and stimulated daily if not for them and their music time and their feeding and physical and speech therapists. It’s also where we found the best babysitter in the world and maybe the only one who can handle all three without making us sign a waver.  It’s his aquatic and equestrian therapists who rave about him and push him past the whining to higher levels of strength.

Charlie’s horse, Dumpling, all decked out for the holidays

Walking up the steps like a champ.

SnapChat sillies  at school.

 

 

 

 

 

 

 

 

 

I’ve never been a group therapy person. I don’t have anything against it, but something about the parents loving other parents in a room with tissues and coffee makes it feel artificial. The relationship ends when the session is done. My tribe has been formed and solidified through both trauma and laughter. My mom accidentally de-trached Charlie during a clothing change. My dad fell down the stairs while carrying Charlie and took one for the team, sporting a torqued back for a month. Our aquatic therapist got him to walk for the first time in the pool and the twins ate their weight in hot dogs at Charlie’s annual school picnic. These are our people and we will attempt to return the love, but we are grateful to know that it doesn’t matter if we can’t. They don’t keep a tally and for that we’ll throw our hands in the air and shout a hallelujah and eat our pizza and keep on trucking. Find your tribe and keep them close.

 

Who’s your tribe, those people that just get you?

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