Playing the Special Needs Card

I recently wrote about the relentlessness of special needs (here) and the challenges it poses to our family. Not surprisingly, people commented that they'd had no idea what life is really like for families like ours. That’s actually fine by me. Who wants to play the perennially needy and exhausted special needs mom? I’m not always needy and exhausted. But sometimes I am. Perhaps none of us are really as transparent about our needs and struggles as we could be. It’s hard to admit when we need help or to pull back and say no to new obligations when we’re overwhelmed. I guess I’m no different. 

One of the ways our family deals with the persistent nature of special needs as a family is to find opportunities to take a break, get away, or take time out from the usual obligations. Getting away as a family is one way we do that. For us that doesn't mean Disney or a tropical getaway. Sometimes we cash in any kind offers from friends (You've been warned - if you invite us to visit, we will!). That's why over the recent spring break while many of you were posting pictures of sunsets and drinks with little umbrellas, we headed north to sunny and beautiful, if not exactly palmy, rural Wisconsin. 

Birding

We slowed down, relaxed, took long walks through prairies, flew kites, fed chickens, and best of all, caught up with old friends. The surprise gift of warm breezes and blue skies kept us outside a whole bunch. 

Climbing

Being Boys

Our dear friends, Peggy (my college roommate) and Jeff and their kids have a small farm where they sustainably raise chickens and grow vegetables which they sell at a local farmer’s market. They also have quite the menagerie of cats, chickens, horses, and a dog named Hershey. 

The joy of a simple vacation, time away, and good friends. Aaaah.

Planting

Gathering

I also cancelled some obligations and activities over the break. I felt guilty at first, but it turned out to be the best thing for us. Back when Margot was first born and we had a new diagnosis, it was easier to ask for help or bow out of excessive obligations. Everyone rallied around us offering meals, childcare, and support of all sorts. It helped us through those initial painful days of shock and disbelief, the scary medical appointments, and fears of the unknown. Now, almost nine years later, we’re used to our new reality. But, as I described in my last post, things have never gotten back to what most people would understand as “normal." It’s challenging to be honest about that without feeling awkwardly inadequate, reminding people all the time or repeatedly asking for help. The fact of the pervasive nature of living with special needs is that long after we might want to be “over it” and move on, we’re still in Special Needs Land. I don’t want to be the needy friend who always grasping for extra attention and coddling. I want to be strong and independent. I want to feel good about helping you once in awhile.

But the fact is, my life is challenging in ways that most people would never just guess on their own. So I have to ask. I have to be honest. And I find that people are genuinely willing to help when I share my struggles. I’ve found that sometimes I just need to be really clear and say, “it’s been a very rough week and I need help” or let people know I need to get out of some obligation or activity on my typically over-programed calendar.

Privately, Bruce and I joke about this as “playing the special needs card.” This evolved out of a desire to make others understand our world. Rightly or wrongly, we often feel that we have to remind people we have unique challenges in order to justify asking for help. Sometimes we joke about it to lighten the mood, as in “I wish I could play the special needs card and go to the front of the line…” Wouldn’t it be cool if parents of kids with special needs got a deck of cards along with the diagnosis, all those doctor appointments, and extra stress? It would entitle them to a few extra perks once in awhile, just to level the playing field so to speak. There could be a card to “lose a turn” (at something like the bake sale or car pool), pick two (two hours away from the kids), and get out of jail free (skip potty training or some other difficult milestone).

But honestly, we joke mostly because of how much it is not a joke. Special needs are assigned randomly. What are the odds? For Down syndrome, ours were 1 in 500. Why us? Why not someone better equipped for it? Who knows? For us “playing the special needs card” really means admitting things are hard and that we can’t do everything. Not just because of the usual life stuff, but because we have some extra special circumstances stacked on top.

Sometimes we feel guilty. It feels like mooching to ask for a special dispensation or some understanding. It feels like an illegitimate entitlement or an excuse. But when we’re really struggling, being honest has been the best move we could make.  We find that people respond very generously. It lightens the load significantly when we can share it with others. 

Our week away in Wisconsin was a much-needed respite - refreshing and rejuvenating. We’re so grateful for friends who join us on our journey, cut us some slack, let us relax, and feed our souls with their conversation, hospitality and companionship.