School pictures arrive!

A couple of weeks ago I shared my letter to the school photographer at my children’s public school and revealed the complex feelings I have when strangers photograph my son with special needs.

Well, the pictures arrived today — and they look fantastic! There’s a big smile, bright eyes, a little signature hand clapping at the bottom of the frame. Even the class photo, which often looks like a band of rogues and renegades, is adorable this year. Every child looks special and happy.

As I practice these new skills of getting clear on what we need and want and then asking for it — it’s so great to have some successes under my belt. For a long I was so afraid of having my heart broken by a “no” that I retreated and isolated myself. I don’t expect that asking for help will always have a positive outcome, but it’s a true relief that it did work out this time.

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Durga Tool #2: Empty space, as symbolized by trash bags

Here’s the second in what will certainly be a belabored series on tools that inspire me as a special needs parent to live with joy, courage and compassion, as inspired by the Hindi goddess Durga.

As the Big Brother Big Sister Donation truck drove off with several enormous bags of my stuff yesterday, I realized that I’ve a developed a bit of an addiction over the past few months to the delicious rush of the feeling of spaciousness – physical, mental, psychological and spiritual – that comes from picking an area of my home and then giving a ruthless “buh-bye” to anything I don’t love, need or want contained within it. After decluttering a drawer, a shelf or a closet, I can return for days to gaze at the generous capaciousness, not just the controlled order of the things, but the blank space between the things that reside there.

Years ago as an art history student, I attended a lecture by an artist who said her aesthetic had completely changed after she became a mother. The delightful sense of control she felt when looking at a pure, unadulterated stretch of her kitchen counter or silverware precisely nestled in its dividers shaped her own work over time. Her canvases, once full of heaving Baroque forms and manic Rococo swirls, now revealed becalmed expanses of open landscape. At the time I was a pre-Raphaelite devotee, enchanted by claustrophobic layers of symbol and allusion. Her revision to her own artistic output seemed a little, well…sterile. Twenty years later, let me just say this: Lady, I totally get you.

So why this 180? After spending most of my twenties and thirties earning money to acquire things and a house to display them in, lately I have a real appreciation of having less stuff. Having less stuff means having less stuff to pick up, clean, nag others to put away, resent others for when they don’t. Less stuff to distract. Less stuff to cramp my style during my dance parties with the kids. Less stuff to block the sunlight from pouring into the room.

“Have nothing in your houses that you do not know to be useful or believe to be beautiful,” said English art critic and designed John Ruskin. Using Ruskin as my de-cluttering buddy has sometimes left me with remarkably little to work with. I got rid of so many undesirable, odd-ball plates and glasses that for several months I couldn’t fill the dishwasher before needing to run it. Maybe I took things a little too far, but so far there’s nothing I’ve regretted parting with.

Having less stuff gives ample opportunity for two other valuable practices for me as a special needs parent.

The first is trust – trust that I can let go of things I don’t need right at this moment, and the Universe will provide for me if and when I need it again. Practicing get rid of things that I “just might need some day” with the faith that something better will come along later on is a great antidote to the Terror of Scarcity which can cripple me at times.

The other practice de-cluttering helps me with is letting go. With each thing placed in the “Donate” box, I practice letting go of the need to cling to any one thing. I practice letting go of the need to fill every little nook and cranny in my home and my mind with shiny distractions. I practice letting go of what others think I should like and enjoy. I practice letting go of who I was and who I wanted to be as embodied by countless unfinished projects and long-ignored stuff, making room instead for dancing, sunlight and the person who I have become.

Spending a day on the island of Sodor

At the parenting workshop I attended several weeks ago, we were asked identify our special needs child’s hobbies and interests. I’m sad to say that I was really at a loss on how to answer that question.

Had the subject been my typically developing six-year-old daughter, a host of answers would have sprung to mind. Studying insects, telling knock-knock jokes, riding her bicycle, reading – she is willingly fascinated and voraciously curious.

Seeing my son’s interests clearly is not as easy. His combined cognitive and communication delays, incredibly short attention span and even his extremely go-with-the-flow attitude make it difficult to say for sure what he’s interested in. At home, he often has trouble meaningfully playing with toys; he pulls toys off the shelf, perseverating and cycling through the objects themselves but not always engaging with them in a way that demonstrates genuine affection for them.

The things he does lock on to are often household items and electronic gadgets – keys, the kitchen laptop, the holy iP trinity (iPad, iPod and iPhone) – but nothing he can figure out how to use without tremendous amounts of help and frequent re-booting. He spends an hour begging for me to turn on Thomas the Tank Engine, repeating dozens of times that I’ll put it on when the timer buzzes at 5:00, only to watch for two minutes before abandoning the episode in order to aimlessly wander around the house. He can sit for long stretches of time in his Cozy Coupe on our deck, but it often seems like more of a soothing environment for his nervous system than genuine pretend play.

This realization — that I didn’t know where his perseverations ended and where his interests began — saddened me, stirring up all kinds of emotions about the ways I do and don’t connect with him. It was with some sense of guilt that I also realized that we spend much of our family time doing things that were primarily interesting to everyone else in the family but him, because I simply don’t know what he wants to do. Content to simply be with us, he gladly comes along, though it is not always clear that he would have picked these activities if he could express himself.

It was at another seminar (yes, I do have other hobbies, I swear) by brilliant blogger and author Susan Senator later in the month that I got some great advice. I can’t remember what she said verbatim, but the gist of what she said was basically this: a child’s perseverations ARE their interests, and sometimes it’s better to cultivate them rather than try to eliminate them through therapy. (Susan, if that’s not what you said, I apologize, but as you’ll see, it was what I needed to hear.)

So yesterday our family spent the day with several hundred grey-haired gentlemen at a model train expo. I saw a kid-sized Thomas umbrella, and rather than talk myself out of buying it, knowing it would likely be broken within the hour, I watched as my son’s eyes lit up when I told him the umbrella was his. We stood for a long time at the Thomas model train exhibit, and I carefully pointed out not only Thomas but Percy, Anna and Clarabelle, Trevor, Cranky and Sir Topham Hat, all lovingly assembled in a scaled down version of the island of Sodor by some older man who was so happy to connect with folks who shared his passion.

Reflecting on it now I realize that I have, after all, been pulled into his world. How else am I able to engage in a conversation about the disappointing new CGI Thomas and lament the loss of the old stop-action shows? I can be so hard on myself. Of course I know my child. He may not articulate what he loves as clearly as other kids, but if I take the time to listen, it’s not impossible to figure it out.

Durga Tool #1: Time spent in Nature, as symbolized by my thermos

As promised in yesterday’s post, I would love to share some the contents of my Durga toolbox that help me as a parent of a child with special needs stay joyful, courageous and compassionate on my path through life.

To recognize the value of my first tool, you must understand that I live in one of the most densely populated cities in the US. It’s hipster, urban, organic, ironic geeky, smart and innovative. Think Fred Armisen and Carrie Brownstein brilliant comedy Portlandia (check out the hilarious opening sequence), but for real – Rock, Paper, Scissors tournaments, roller derby leagues, coffee shop patrons tying up tables for hours while typing on antique
typewriters, waitresses wearing fake mustaches for their entire shift with a straight face. (Yes, these are all things that I swear I have seen first hand in my own neighborhood.)

But green it is not. I don’t mean green as in eco-friendly, because the city prides itself on high walk-ability and the upcoming single-stream recycling program. I mean green as in actual trees, green as in chlorophyll, the
necessary ingredient to transform carbon dioxide into oxygen through photosynthesis. I mean green as in the opposite of grey and black, the colors of concrete and asphalt. Green as in things not covered in vinyl siding or
surrounded by chain link fences.

I love how cities invite and cultivate weirdness. But after a while this lack of green does a number on my nervous system and my sense of perspective, and I get a little neurotic. And neurotic is not helpful if I want to lead a
joyful, compassionate and courageous life. If I spend too much time on pavement I stop seeing the joy and focus too much on the challenges. I irritate easily, I forget to be grateful, and I get tense and annoyed.

My husband is Swedish, as in being from Sweden. Besides having a penchant for ABBA (for real) and an innate ability to assemble IKEA furniture (and have fun while doing it), he also comes from a proud people who seem born to spend time in nature. Swedes don’t just have summer houses in the country; they have tiny little summer shack out in the woods for when the summer house gets too crowded.

My husband has taught me the value of getting out in the woods to combat urban fatigue.  Surrounded by a few trees, my twitchiness subsides. My breathing deepens and slows. My delight in simple pleasures returns. So most weekends, my husband and I take the kids out of the concrete jungle for a little communing with Mother Nature.

Because our kids are not physically able to hike for long stretches, we’ve developed a raison d’être for these outings: the nature picnic. To say that we rock the nature picnic is an understatement, if you’ll allow for some bragging here. We have separate thermoses for coffee, milk and hot chocolate, thin foam pads to sit on, nesting cups that take up little space in our backpack (I’ll try to find a link some time), a nature guide, a ready supply of wet wipes, and one golden package of our ubiquitous Maria cookies. Year round, we can be found sitting on a fallen tree trunk or a large rock dunking our cookies and listening to the sounds of birds and squirrels.

The coffee tastes better than anything our hipster baristas could craft, the kids are entertained looking for pine cones and sticks, and there is absolutely nothing to do. That is, nothing but settle back into myself, and be gently reminded by Mother Nature that the world is full of an endless supply of things to marvel at, helping me recharge, heal and become whole again.

Intro to Durga’s Toolbox

A couple of weeks ago I wrote about my new role model/proposed patron saint of parents of children with special needs, the Hindi mother goddess Durga, who with the help of her eight (sometimes 10) weapons serenely defeats the demon intent on destroying the universe.

Since then, I’ve found myself fantasizing about my ultimate eight (or 10) weapons that I couldn’t live without. I quickly realized that because I’m a lover not a fighter, (as I described in another earlier post about my anti-Mamma Bear status), I got very juiced to conjure up a list not of weapons, but of tools.

Like many parents of kids with special needs, I have a kick-ass toolbox filled with tools honed and sharp, ready to be wielded at a moment’s notice, so that in any given situation — whether the demon is fear, exhaustion, lack of cash, bureaucrats, gatekeepers, odd-ball comments from strangers or five extra pounds weighing me down — I have a huge selection of highly specialized implements available to get the job done. Some tools are universal, some are personal. Some are physical objects, some are virtues. Some I’ve mastered, and let’s consider others to be on my wish list.

Be on the lookout for the contents of my toolbox. I’m curious about yours too. I want to hear about what tools you have up your eight (or 10) sleeves to keep you strong, courageous, joyful and compassionate.

The cicada goes quiet

Less than an hour ago, I stood on the sidewalk waving good-bye to my little guy as his bus pulled away from our curb. He’s on his way to his new out-of-district special education school. He started yesterday, settling in so easily as to almost hurt my feelings, but today was the first day of sending him off on the bus.

It’s been a busy and difficult couple of days watching him say good-bye to his beloved friends and teachers and getting him settled into this new place and a new routine. Coming back into the empty house, I rushed to my desk to catch up on the paperwork and emails that have collected as my mind and body have been elsewhere, buying flowers, filling out forms, meeting new therapists and new parents, worrying about how these changes were affect my child.

It’s been a busy year actually. As I mentioned in an earlier post, I’ve spent the last year exploring this whole topic of my son’s educational progress more closely, working together with an education consultant, a neuropsychologist and a lawyer, as well as our school district’s special education staff and my child’s school team. I’ve spent thousands of dollars and countless hours reading reports, meeting with the team, and learning what it really means to advocate – to see clearly what the situation is, to find out if more is needed, to educate the gatekeepers about what those needs are, and to wait gracefully while they catch up and while trusting the Universe that they will. To wait and trust, to wait and trust, and to wait and trust some more, while months go by with little progress, while being assured that “we must follow the process,” while the grooves of the neural pathways that are traveling to unproductive places in my son’s brain dig deeper and deeper.

This morning, after attacking the backlog for a few minutes, a wave came over me of what I can only assume is a feeling of relief. I say I assume that this is relief, because as feelings go, this one is has been a stranger. It’s presence in my body – the release of my clenched jaw, the easing of the tightness in my neck and shoulders, the deepening of my breath – is actually the first indication that it’s been lacking for so long. Like the drone of a cicada that goes unnoticed until it stops, I could hear this glorious silence in the house, in my entire body and most gratefully, in my mind. I sat absolutely still for several minutes.

So. Hello, Relief. It’s nice to see you again. How’ve you been?

I’m not foolish enough to think that with this single change everything has been fixed. “We’ve got a long way to go and a short time to get there,” Jerry Reed delightfully sang in my childhood. But mercifully, those thoughts are staying away for now while I enjoy the silence. For today – or at least for these few moments – peace abides.

P.S. In case you’ve never experienced the thrill, the chill and the shrill of the cicada, or if you just want to experience what my relief feels like, here’s a video.

The upside of being labeled

Yesterday we spent the day with what I affectionately refer to as our “tribe” – a group of families who all have a child with the same genetic syndrome as our son. We hung out, had lunch, chased kids, talked shop, gossiped about doctors, shared resources, marveled at similarities and empathized about shared challenges.

Although my child with special needs is nearly nine years old, we didn’t become members of this tribe until about two years ago.

I refer to our pre-diagnosis years as our “Whack-a-mole period,” when we had enough random symptoms to know that our child probably had some sort of medical syndrome, but nothing that appeared on battery of genetic tests for the usual suspects and not enough symptoms to qualify him for any clinical diagnosis.*

At each annual checkup I would brace myself as his pediatrician scoured his body for new and exciting symptoms. Shouldn’t his fontanelle be closed by now? Let’s go to a neurologist. Is that a heart murmur I hear? Quick, to the cardiologist. Aren’t those kidneys too small? Let’s call this nephrologist. Trouble chewing? Let’s go to Ear, Nose and Throat folks. Or Gastro-intestinal. No, let’s do both. Oh, and let’s not forget the therapies — speech, physical and motor. Let’s just spray and pray, cover all of our bases.

Knowing what your syndrome is can be helpful because it lets your doctor know what else to look for. But we had the most vigilant doctors in the city known for vigilant doctors and I wasn’t worried that we were missing any symptoms. Even without an over-arching diagnosis to act as a treasure map, all of the symptoms were being identified and treated. Who needs a diagnosis? It’s just a label, and we’ve been raised to see labels as limiting, so who needs that?

Besides – a diagnosis, I was told, doesn’t often give a prognosis or helpful idea of what to expect for the future. Two people with the same genetic mutation can often experience wildly differing symptoms; even if they have the same symptoms, the severity of the symptoms can differ from nearly undetectable to life threatening.

Eventually though, as new symptoms appeared, my child did receive a label for his particular constellation of features. As predicted, getting a
particular name for his combination of symptoms did not really give us any meaningful prognosis, and it didn’t reveal any other symptoms – apparently my pediatrician is pretty good!

I’m not leaving out the actual diagnosis in this post and on this blog to beobtuse, but because it’s beside my point.

The point is: because of the diagnosis, I have a tribe! On-line or in person, on a list serve, on Facebook or at an international conference, there are some people who share an appreciation for my child’s mysteries and gifts, and I care about theirs.

After our family gathering was over yesterday, three of us moms hopped in a car and drove across town to visit another mom in our tribe whose daughter is spending more time in the hospital than any child deserves. If you lined our children up beside each other, you probably couldn’t even tell that they have much in common. But here we were, together in spirit always, in person for the day. Without that label, we wouldn’t have been.

The label does matter. If not for any medical reason, a diagnosis helps parents connect with other parents.

To all those folks out there who are raising special children while waiting for a diagnosis – I leave this blog anonymous especially for you. Maybe while you’re waiting for a definitive answer, you can join my tribe. Hopefully the medical folks or the therapeutic experts can cover the symptoms while you wait. But don’t let them tell you a diagnosis doesn’t matter. Maybe it doesn’t matter to them – but it does help you find support. In the mean time, I’m listening.

*For the interested lay folks out there, there are two ways to receive a diagnosis of a syndrome: one can have what’s called a genetic diagnosis, where blood is drawn and taken to the lab and a mutation is found on a specific gene; or one can receive a clinical diagnosis, where a person exhibits enough, but not all, of the possible symptoms associated with the syndrome. Not all genes of all syndromes have been identified, so often a clinical diagnosis is the best one can hope for.