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.

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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.

What a difference a year makes

I’ve had an active, entertaining weekend. Yesterday I attended a Special Needs conference hosted by a statewide consortium of agencies that serve families and children with special needs; this morning I joined 6,000 festive folks to run 5K through our town.

Because both events occurred on the same weekend last year as well, I found myself playing “Compare and Contrast” with my life as it is now and how it was one year ago. 

I can see now that a year ago, I was in distress. For a couple of years (yes, years) I had been ignoring a gnawing suspicion that my special needs child’s school placement was ineffective. He was happy, he loved his teachers and he seemed to be making progress, but that nagging question of whether he could be making more progress and whether this progress was enough to get him ready for adulthood was always churning in the deep, dark recesses of my mind. I had no idea who to ask for help, and I was busy running a successful niche consulting and training firm, tending a marriage, helping to care for my sick and aging father, raising two kids, unloading the dishwasher, juggling, balancing. I was keeping things at an even keel, so something must be going right.

A year ago, the bubble burst, the mirror cracked, the wool was pulled back from my eyes, whatever you want to call it. During a conversation with my husband about the possibility that he could switch jobs within his company, I spontaneously and without warning floated the idea that maybe, just maybe, there was a chance that this new job would pay a little more so that I could sell my business in order to focus on taking care of our family.

I have no idea where those words came from. I had never even dared think them. But once they escaped my lips, I knew that I could never get them back in again. Raise or no raise, I knew that all I wanted to do was to focus full-time on what our family needed. I even felt physically different. I told friends at the time that it was as if every single cell in my body celebrated the fact that I was ready emotionally ready to do whatever needed to be done. 

Fast forward a year and much has changed. Next week my child will start in an out-of-district school that we are confident will effectively meet his needs. (Don’t worry, suppression is no longer my MO.) His cardiac issues, which were so severe as to require two interventions in seven months a few years ago, are so improved that he no longer needs medication. He started private speech and OT therapy to fill some gaps while we waited for our school district to catch up with us. He’s grown several inches and even a few pounds.

He’s not the only one changing. I’ve taken trainings, joined list-serves, found financial help, made some new friends, started therapy, read books, lost nearly 20 pounds, sold my business, de-cluttered most of the house, and started a rigorous kundalini yoga practice.  My husband and took a first vacation, our first without the kids, to a Greek island. I turned 40.

Not all of the change has been good. After many years of struggling with a chronic illness, my father passed away six weeks ago. It was an intense and sad process and the effects are continuing to unfold. The fact that I could spend much more time with him during this past year is something I’m grateful for. He knew of my intense relief that his grandson would be starting at a wonderful new school. I’m grateful for that too.

A year ago if you had asked me “What’s new?” I might have answered “Nothing much.” Same old routine doctor follow-ups, same old bills, same old dishwasher to unload and re-load. This year, that’s just not true. Things change. So what’s new? Everything.

Getting unstuck

Certain emotions — like fear, anger and sadness — are a little sticky for me. Among the skills that helps one get through life (like being able to jumpstart a car and make good martini) “processing painful emotions” isn’t one I’ve mastered. It’s not that I don’t feel those emotions, but I don’t always seem to experience them full out. I take a kind of walk-it-off approach, like when someone falls in public then jumps up and reassuringly shouts, “I’m OK!” and walks away quickly, even when their leg is bleeding.

As the challenges facing my child and my family queued up — medical, cognitive, financial, psychological, marital, and legal – the plain old fear developed into more of an outright terror. Even then, my Jedi mind tricks got me through. Move along, there’s nothing to see here.

During the first few years as a parent of a child with special needs, I became an expert at keeping painful emotions at bay by staying busy. I was a Superwoman – I worked full-time, had another baby, started my own business, served as PTA President – and I did it all with a smile on my face, a spring in my step, always upbeat, optimistic and positive. Not particularly joyful …just incredibly busy and completely exhausted.

Eventually, as most people skilled in the art of denial come to learn, it becomes more and more difficult to keep up the façade. As special needs single mom M so aptly puts it in her blog, In the Mire,  “[m]y theory is that you can’t get through special needs parenting without healthy and normal doses of denial at certain stages, which God then gently pares away when it’s time to move forward.”

Fast forward a few years and gratefully some level of the denial is being pared away, (maybe by God, maybe by lots of meditation, yoga and getting caught up on sleep) and I find myself not running away from my terror. After years of living as though this terror was a bottomless abyss that threatened to swallow me whole if I got too close, I’ve started to visualize it instead as a desert canyon. Sitting at the edge of this canyon, with my feet dangling off the edge, feeling a gentle breeze, I try to conjure up not a sense of fear as I look into its depths, but fascination. I’m trying to be a little bit more courageous to, if not befriend it, then to at least get to know it better. How deep is it? What are its layers made of? Does anything live down there?

As I explore and catalog the inner workings of this canyon, I find that it even has a name: the Terror of Scarcity. In the Terror of Scarcity, there’s never enough and there never will be – enough me, enough of my husband, enough expertise, enough time, enough health insurance, enough research, enough kindness, enough therapies, enough strength, enough resources, and especially, more than anything else, enough years of life in my body – to get my child safely and meaningfully through his life.

That’s a pretty scary place to explore. No wonder I avoided it. But guess what? I didn’t fall off the edge and I didn’t get swallowed whole. I’m still here. As long as I was unable to face the fear, there never was enough. I’m no longer so dysfunctionally optimistic that I can wish away the fear; as hard as it is to do it, I can only stop what I’m doing, look at it and really feel it. I don’t know for sure that getting to know it any better will ever make the fear or scarcity subside, but my instincts tells me it will. The biggest relief is that I don’t have to stay so tightly wound up anymore, so chipper and cheerful, so incredibly busy all the time.

There’s more to explore here, as there is in all rich places. But for right now, I have to go play with my kids.

You get me…you really, really get me

I just came home from two days of special needs parent training. It was the kind of weekend that makes my life seem almost glamorous—free hotel with a glorious night of uninterrupted sleep, food flowing all day with no dishwasher to load afterward, a cozy bar with a fireplace…oh, yeah, and the chance to learn a great deal about becoming a more effective parent of a child with special needs. Let’s not forget about that. What more could an overwhelmed, exhausted mom ask for? I get to do this three times in three months as part of this training, and I feel like the luckiest gal in the world.

But besides the cookie breaks and the swimming pool, the greatest unexpected bonus has been getting to spend some time with folks who have loved ones with special needs. Even though our kids and siblings are different ages, have different diagnoses and symptoms, different challenges and different prognoses, it feels so strange to be among so many people who “get” me, my family and my life so well.

I’m really unused to the feeling of being so seen and understood. “I totally know what you’re talking about,” was heard more than once, along with “I can really relate to what you’re talking about.” Even things like, “You’re being too hard on yourself,” or “Stop feeling sorry for yourself, you can do this,” is easier to hear when spoken by someone who is in the trenches with you.

In one exercise, we practiced the critical special needs parenting skill of asking for things by asking each other to do crazy random stuff in order to complete a Bingo-style game. I told one dad my pin number; he showed me the color of his underwear. I asked a woman for her real age and weight, and without batting an eyelash she laid it out there for me. When the game was over we were asked what it felt like to ask each other for help; one person said that they had no doubt that anything they asked for from anyone in this group would be given, and I realized I felt that way, too. For someone who spends most days in a scarcity mindset, I found it incredibly nurturing. 

I hope I’m not giving the impression that my friends without special needs kids are not generous or supportive – I have some amazing sympathetic listeners and willing helpers in my life. They are my cheerleaders and my problem solvers. They are my shoulders to cry on and my emergency babysitters and they start prayer chains that create miracles. But to be allow myself to be honest without worrying about freaking someone out, without worrying about coming across as neurotic or depressing or pitiful (or at least not worrying that that stuff would scare them off) – that just feels good in a different way. And knowing that I might be letting another person do that too – well that didn’t feel too bad, either.

Dear School Photographer

Today is one of those perennial childhood milestones — School Picture Day.

Along with a check for $24 and a form selecting Package D with a “Scenic Background” upgrade, my child brought in the following note to his school photographer (and before you flip out, let me assure you he can’t read):

Dear Photographer,

My child has a wonderful smile, but sometimes his special needs get in the way of letting him share that smile in front of a camera.

Any extra time or effort you can lend to making his picture show the happy boy he typically is is much appreciated. I know you’re busy today, so thanks in advance.

Sincerely, etc. etc.

Please don’t get me wrong—my child is adorable. When he smiles, it is like a joy switch is flipped somewhere deep in his heart and he shines on everyone who sees him. But that sunshine-y glow has become very elusive to a camera. Whether it’s because of his fascination with electronic gadgets like cameras or because of physiological facial differences related to his special needs that have become more prominent in recent years (the industry term is “dysmorphic features”), he is not always photogenic. Blessings on whoever invented the digital camera, because with enough patience, time and effort we are able to capture his true beauty for posterity every now and then.

I’ve come to dread School Picture Day. If it weren’t for my typically developing daughter who happens to LOVE School Picture Day, I would skip them altogether. Since the flyers went home two weeks ago, she has talked of little else (“Only two days till Picture Day!”) and her outfit has been hanging in her closet for days. And because I can’t imagine sending in a check for her but not him, I give take a deep breath and hope for the best every year.

Trust me, I know there are plenty of typically developing kids, future George Clooneys and Halle Barrys, who will get really awful school pictures every now and then. With that posed grin and the wistful glance off to some imagined scene far off above and to the left of the photographer, it’s hard to look good.

When I have tried to explain it to a couple of friends with typically developing kids, they give me that look that tells me I might seem to be a tad overly sensitive about this. It’s just a picture. Take it. Leave it. Move on.

But I’ve come to realize what’s really bothering me about this whole picture day thing. It’s not about getting an 8-x-10-inch portrait that I can showcase on my mantle. It’s this: a person is looking at my child; let’s put aside for a moment that this person looks at people for a living — really tries to see them and capture their essence — and that I am paying him or her to do so. This person is looking at my child and what it seems to me is that they see “A Child with Disabilities,” and they don’t feel the need, responsibility or ability to get beyond that. And frankly, that scares me and it makes me sad.

Before I had my son, I will admit that I looked at people like him and I too only saw the disability. I’m not proud of that. My world was smaller then and it was much less interesting.

My son is beautiful. And he is worth getting to know. It might just take a little extra patience, time and effort. Anything you can spare to see the happy boy that he really is, inside and out, is greatly appreciated. Sincerely, etc. etc.

Durga: my nominee for Patron Saint of Special Needs Parents

Strolling through the Peabody Essex Museum last weekend (wow, something in my life must be working!) I found myself in the Indian exhibit stopping short in front of an image of the Hindu goddess Durga.

The image of this strong woman with her arc of eight arms arrested me with an unexpected sense of recognition. Replace her sword with a smart phone, her bow and arrow with a set of car keys, her staff with a binder of IEPs and medical records, and she resembled me, the flailing multi-tasking mom. What special needs mother these days wouldn’t recognize her own self in this image of an ancient Hindu over-caffeinated, over-achieving righteous mama?

But examining her in more detail, this self-assured glowing goddess riding astride a fierce tiger while conquering a demon that threatened to unravel the universe, I quickly realized I had found a role model, an inspiration, my patron saint. Here’s a bit of her story:

Durga is a mother goddess, according to the supreme source on all things holy, Wikipedia, who “can redeem in situations of utmost distress…a supremely radiant goddess, depicted as having ten arms, riding a tiger, carrying weapons and a lotus flower, maintaining a meditative smile…. An embodiment of creative feminine force, Durga exists in a state of svatantrya (independence from the universe and anything/anybody else, i.e. self-sufficiency) and fierce compassion…. Durga manifests fearlessness and patience, and never loses her sense of humor, even during spiritual battles of epic proportion.”

Even her name inspires me. From the Sanskrit dur-= “with difficulty” and ga= “come” or “go”. Sometimes she’s referred to as Maa Durga, or Mother Durga. Like Durga, I am a mother who travels a path of many challenges. I’d love to think she’s got my back.