A is for Appreciation, T is for Teacher

In all the years of my life that I worked grownup jobs, from that first job as a Salad Girl (yes, that’s what it was called) at a steakhouse through years of burnout social service jobs, to my most recent role as a policy nerd, I never found one that made as much of an impression on me as my current gig. No, I’m not doing brain surgery or solving the mysteries of the universe. I’m a substitute teacher. I didn’t really choose this role. Having been out of work for months and recognizing that I couldn’t make a living writing a blog and sitting around eating bonbons all day, I thought I’d try out substitute teaching in our local public school district, purely out of necessity. 

It was with a sense of dread that I took on each assignment. I began by bouncing around daily from school to school, trying out early childhood, elementary, and even junior high. If you asked me how I liked it that first month, I may have started crying. I hated it. But eventually I found my sweet spot. I worked at Margot’s elementary school a few times and found that I really liked it.  Then they asked me to stay on as a “permanent sub”. Meaning, I have a regular job assignment that I do every day, but I’m technically still a sub so I can take time off anytime I need to for interviews or whatever. It’s been a great gig because I get to really see the inner workings of the school my daughter attends. I get the inside scoop on how Margot is doing everyday and most of all… I get to be around some of the most amazing and inspiring people I’ve ever had the privilege to work with. 

First of all, teaching all day is hard! If I ever before doubted that teachers were amazing, I now know beyond a doubt. I’ve experienced firsthand the extent of the effort it takes to be with a student or a group of students who are not one’s own children and to be responsible for helping them not only live to see the end of the day but actually learn and grow every moment of the day. I myself am not even responsible for a whole classroom, or for developing curriculum, or meeting common core standards, or any of the myriad stressful things regular teachers do everyday, all year.  For me this is just a stint - a fun chance to dabble in the world of elementary education. It’s a short term arrangement until I go back to my “real-life” career (I hope). Yet I come home exhausted daily. In fact, some days I fall asleep as early as 6pm. And I’m not even a permanent teacher. I’m a substitute.

But the main thing I’ve learned isn’t how hard teaching is. It’s that people who teach are freakin’ amazing! I’ve had the privilege to experience firsthand the love, commitment, and passion of literally every teacher I’ve come across. Nobody does this job for the money. It’s a labor of love. The teachers I’ve met not only mold young minds; they inspire. They care deeply. They tie shoes before P.E. so little feet don’t trip, they stay late making copies (even though they have a master’s degree) so students will have just the right materials. They manage classrooms like lion tamers at a circus and they make it all look so easy. 

Have you ever walked into your child’s classroom and just taken it for granted that students were quiet and working diligently? I know I did. Schools are supposed to be quiet studious places. Well, let me tell you, that crowd control thing in elementary and junior high? Not as easy as it looks.  It’s only possible because of an act of God or a very skilled and firm teacher at the helm.  Everyone should have to spend 6 months as a substitute teacher to see what amazing people there are in our schools. I have a renewed sense of appreciation for the quality of education my children are getting because of the dedicated people who work with them day in and day out.

Like a good Pinterest-obsessed mom, I scoured posts to find the perfect little token of appreciation for this week’s Teacher Appreciation festivities. Many thanks to Rebecca at Simple as That for the great template! 

It’s way too small and doesn’t come close to expressing what we owe these individuals. But, teachers ARE the balm! The balm for a weary mom who is so thankful to know that skilled, loving people care for my children in the hours they are away from me. Thank you.

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.