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.

Wold Down Syndrome Day: Why I Support Cognitive Research

Once upon a time there lived a little girl who loved life and lived it to the fullest. She was energetic and tenacious, smart and imaginative, kind and outgoing. But she knew that she was different from the other little girls in the land and was sad that because of that difference they sometimes didn't want to play with her. She complained that often when she tried to do things that she needed to do her brain wouldn't work right, and she knew that this was part of what made her different from the other little girls. Her parents loved her dearly for who she was and rejoiced in all that was unique about her, but they also grieved with her when she was frustrated or lonely. Then one day her fairy godmother appeared to her and offered a magic pill that would make her brain work better...

It's not a fairy tale. This is our actual life with Margot, and there really is a potentially magic pill on offer. Cognitive research into Down syndrome is at this very moment on the brink of realizing drug therapies that could reverse some of the disabling cognitive effects of the extra 21st chromosome in people with Down syndrome. Not just the ones that Margot experiences right now, but also the dementia that will otherwise certainly overtake her by the time she reaches middle age. So, while I love my girl exactly the way the way she is, I also unabashedly support the cognitive research that could provide her opportunities in life that the rest of us take for granted. Here's the low-down:

The cognitive therapies in development are expected to improve IQs by five to ten points. People with Down syndrome usually have mild to moderate cognitive impairment. A gain of just five IQ points would allow someone like Margot to be more fully included with her peers throughout the rest of her education, and give her a needed measure of independence someday when I'm not around anymore to take care of her. That's huge, but there's more that affects all of us even more directly.

While we're at it, let's cure Alzheimer's. This has got to be the most under-reported story of the decade. It turns out that the gene for the disease resides on that tricksy little 21st chromosome that's triplicated in people with Down syndrome. That's why everyone with the syndrome will eventually get Alzheimer's, most beginning around age 35. It's also why people with Down syndrome hold the key to eradicating this disease that so terribly affects the general population. Researchers who discovered the link between Alzheimer's and Down syndrome are now studying how they might stop the over-expression of the relevant genes. For the first time, we can try new therapies on Alzheimer's victims before the onset of the dementia, and so evaluate their preventive potential. Alzheimer's as we know it could be completely eradicated in our lifetime, but it's only the cognitive research into Down syndrome that's likely to bring this about.

Today is World Down Syndrome Day (3/21 - get it? Three copies of the 21st chromosome?). Just today, the LuMind Foundation, which raises funds for exactly the cognitive research I've just described, will match all donations 3 to 1 (get it?). Your gift of just $21 (get it?) today will result in  $63 for cognitive research. $100 becomes $300, and so on. Do it for Margot and all our friends with Down syndrome. Do it for your parents. Do it for yourself, too. If you're able, please consider a gift today. This is as close as we're going to get, in real life, to a fairy tale ending.

Life Boats

Starting with the birth of my first child, well-intentioned people who don’t themselves have any kids with special needs have tried to tell me that parenting is pretty much the same for all of us. I appreciate their attempts to normalize my experience and welcome me to the Every Mom Club. However well-intended, though, comments like this can’t help but unrealistically deny what we special needs parents actually go through. We don’t just bear up under the challenges that pop up day to day, but we carry the continual fear of an uncharted and unimaginable future year after year.

The best analogy I’ve found to describe the relentless stress of special needs parenting is in Stephanie Hubach’s book, Same Lake, Different Boat.

She imagines a great lake with each family in its own boat. Every family will hit troubled waters at some point. Some will get stuck in the storm for longer or sail in and out of the turbulence more often than others.  Families of kids with special needs, though, enjoy fewer moments of smooth sailing and spend most of their journey in cold, icy waters far from shore. 

I actually find this image quite comforting when I wonder why I sometimes feel overwhelmed, exhausted, or just plain too “different” from other families.

So what does the relentlessness of special needs parenting look like in real life? Here’s but one recent example. Two distinct and seemingly manageable challenges, Margot’s sleep apnea and Miles’ fear of throwing up (yes, it’s a thing), feed off each other and suck other co-morbid symptoms and side effects into their orbit to create what I now fondly call The Vortex.

Here’s how it works: Margot’s sleep study turns up a severe case of sleep apnea (comes with the extra chromosome in 99% of cases), which causes daytime drowsiness, lack of concentration, and learning problems. Okay, we can fix that with regular visits to Comer Children’s Sleep Clinic and nightly use of a CPAP machine (with its adorable fighter pilot face mask and insatiable hunger for replacement parts and tweaky adjustments). 

In the quest to ever more finely tune Margot’s sleep patterns, the good docs decide to increase the oxygen levels in her fighter pilot machine. This causes morning tummy aches, acid reflux, missed school days and, oh yeah, lots of vomit. I mentioned Miles’ fear of vomit, right? His anxious  “sticky thoughts” are held in check (sort of) with regular therapy and behavior management interventions that also need tweaky adjustments and regular doctor visits. But even these don’t help when the body fluids start flying. His resulting panic can impact life for quite awhile. His sister then feels guilty for getting sick, which doesn’t help her sleep nor concentration…. You get the idea. Both kids now need extra doses of sympathy and patience, which we have to somehow find while whirling in the howling Vortex. And, there’s no end in sight.

My point? Parenting isn’t really the same for all of us, but I’m not complaining. It’s just life in my particular boat. Some families are enduring stomach flus this winter while others live with cancer, severe asthma or life-threatening allergies. Some reasonably expect smooth sailing again soon while others see decades of heaving swells ahead and the fear of it turns their insides to ice. It’s all shockingly arbitrary and unfair. But here’s the thing: every family experiences difficulty at some level, and each unique journey carries its own peculiar value. There’s no race to overcome the most challenges and take the Super Parent crown. No, parenting isn’t much the same for everyone, but it turns out we all need grace, compassion, and companions for the journey wherever we may be on life’s great lake. Grace and peace to you.