Into the Abyss

Dear One – you have just heard the diagnosis, and you're trying to process jargon that you don’t understand, and prognoses and acronyms you can’t follow. You do know that when “special” is used to describe your child’s “needs” that it is not a compliment. You are sad, and angry, and guilty, and scared. You are heading into a lonely, dark place. I know, because I have been there, and I am here to tell you that despite the fact that you fear that there is no way out, there is. I am not saying it will be easy, or, that when you emerge you will be the same person or in the same place that you left behind, but that’s okay. In fact, that may even be the point of the journey, and one day not only will you be able to see that, but you may find it in your heart to be grateful for it.

Not that I claim to have found my way out completely yet, either. But I am, slowly, trudging and clambering up the other side of the crevasse, after years of stumbling through the rocky terrain at the bottom. I am making my way back to the light from the ineffable darkness, and it is made so glorious by knowing its absence.

Keep going Dear Heart. Just keep finding the next step ahead, that’s all you need to do for now. Your child needs you. Not the child you thought you had, but the one right there with you, who is so much more amazing and extraordinary than the paper doll of your imagination. Our collective concept of what a person should be is so superficial and dull compared to the glorious, incandescent souls of our children. And your child will teach you so much more about who you are and the amazing things of which you are capable.

Your child will help you to tap into the most spectacular superpower you never knew you had: your superpower is Love. And your love is fierce and true, and it will see you through anything if you trust it.

What if the monsters are our friends?

I am going on an adventure. I don’t know how long I will be gone – I think it may take a long time, but also not as long as you may think. You see, I am going on an adventure into my subconscious.

I have been thinking about this adventure for a very long time. But I have kept putting off my start date, so that I could make Plans. These Plans have involved schedules and lists – oh, so many lists – reading about others’ adventures, and lots of preparations and learning of skills. After all, when you are about to abseil into the unknown, unknowable, unconscious of your mind, it helps to know about knots, and ropes, and those metal carabiner clips that help you clip on your harness to the safety line.

But today my friend called bullshit on all my brilliant preparations. She suggested that, maybe, just maybe, all I really needed was the courage to begin. Although she did also offer to lend me her handkerchief for the journey… something about how tears and laughter are always an inevitable part of any adventure. I am inclined to listen to her.

This friend, you see, is quite wise. She is a little monster that I met when I inadvertently took the first step (well, maybe it was a stumble…) into my psyche today. I was doing some gentle excavations in my Self for a writing course that I have just started, which may be yet another delaying tactic, but it may also be more of a jumpstart than I had anticipated. I mistakenly unearthed the opening to the Abyss that I have always feared, and fell down into the first level of my subconscious, just catching hold of the ledge with my fingernails. Much to my surprise, I came face-to-face with my little monster friend, who was as taken aback as I was by my trespassing. In fact, she burst into tears in fear and anguish. She was so afraid of my appearance that her anxiety opened my heart enough for me to be able to feel her pain and sadness. And so, on instinct, I reached out to this little wounded animal and stroked her fur. I am a vet, you see, and I know all about helping wounded creatures. In fact, you could say it is a calling of mine.

In response, she started to sing, and her song was beautiful – heartbreakingly, bone-crushingly beautiful. So much so that I forgot to be afraid and repulsed by her monsterness, and was lost in love for her. For really, as you may have already guessed, my little Monsterfriend is really just a piece of me. And she is beautiful, because, of course, any creature that is loved, is made beautiful by that love.

So we are heading out on our adventure together, with only her handkerchief in our pack. We’ll be ready for the tears and laughter, if nothing else.

Rain after a drought

Wow! I am so bowled over by the kindness and love that came my way after I posted my last blog post yesterday. Thank you to everyone for all your care and support.

Another important lesson to not be afraid to share your struggles authentically and honestly, because people will not only understand, but really respond in a loving way.

As a quick update... the reset button seemed to work, at least in helping me to respond to the little guy more mindfully. Once I gave up on getting anything else done yesterday, I could be open and present to him, even when he started to get ramped up in the evening again. We tried a new bedtime routine, which we had discussed earlier in the day, when he was still feeling regretful about his behaviour the night before. So, when he started to bounce around and get irritable, I took a deep breath and gently reminded him of our discussion about how we could do things differently. So he reluctantly agreed to try it, and I managed to keep my rising panic at bay.

One of the things that we tried was a little bit of yoga before bath and bedtime. It was challenging since little guy is paradoxically both dismissive of yoga being "too easy" since it is not as active as his preferred sports, but also complains about how it is "impossible" because he can't easily do some of the poses. It is going to be challenging to teach him that yoga is a practice, and not an end-result that you get done, and move on - let's face it, most adults struggle with that concept, myself included. So I am asking for any suggestions about good yoga for kids routines that we can try that might help us to practice that together.

From http://www.yogajournal.com

We tried this bedtime yoga article last night, but I think it would be better if we could find a quick video instead, since he was not really listening to my instructions, and I am not good at keeping him on track calmly, and helping him to actually hold the poses. I have also thought about trying to talk to him about mindfulness and meditation, but I think the sitting still part would be really challenging for him. As it is, he wanted to do the yoga with a lacrosse stick in his hand last night...! I am open to thoughts and suggestions.

In the meantime... I need to get back to focusing on work again - I have the opportunity to talk to our new interns about clinical teaching at induction today - and helping our older boy celebrate the end of an incredibly successful academic year. He is hoping to be awarded his house tie at final assembly today, after racking up a slew of house points for inter-house sports this year. He also should be getting an academic award for another "alpha" for his schoolwork, just proving what a talented all-rounder he is.

Best laid plans...

Well, so much for blogging about our move back to the UK... it turns out that moving a whole family from one continent to another, including starting new schools and jobs, finding, losing and finding new housing, navigating the British legal, health, educational and financial systems as a default foreigner, unpacking a large container of slightly damaged possessions, and settling in to a 16th Century, listed cottage, all takes a bit of time, and does not leave much free time for blogging... go figure! It makes me smile to look back at my last entry, written 11 months ago, and see that getting mobile communications up and running was my biggest concern. I guess that is just another lesson in "this, too, shall pass" and keeping things in perspective. A lesson I very much need to remember today.

I am curled up on a giant, red beanbag, in what we call our "sensory alcove" of the aforementioned 16th Century Cottage (Bolebec Cottage), after a pretty rough night with our little sensory-seeking adventurer, who is fast asleep, and buried in cushions beside me. The alcove is actually the walled-off fireplace on the dining room side of a huge, ancient chimney, in the centre of the house, with an active fireplace on the other, living room side. It was a selling point of the house, especially for him, since the previous occupants had had the brilliant idea of artfully placing a small mattress, cushions and curtains here, to make it a comfortable, hidey-hole nook. Of course, our version is a lot less organised and definitely less artfully designed, and just has all our spare cushions, bean bags and a motley assortment of blankets piled into it. Not exactly Architectural Digest (because so much of my life is...!) but more "Hoarders - the soft furnishings edition." But, despite that, or probably because of it, it is our little one's favourite place to calm down and hide from the world. Or, last night, on the hottest night in Britain for the last decade, and after a rather stressful week for him, the ONLY place that he would go to sleep. I, stupidly, fought this, and tried instead to get him settled first in his own bedroom in the attic, which was about 100 degrees last night, and then, in my bedroom, where I could keep an eye on him and try to help him get settled. Except at that point, he was totally ramped up, and manic, and I was exhausted. So, after much fighting, arguing and a little bit of sobbing on my part, I gave up, and let him come down here where he crashed at a little after 11 pm.

So, of course, getting him up early for school this morning, was challenging, to say the least. Dear husband is away on business, and so this means getting little one up earlier than usual, to drag him out on the drive to the station to drop the older one off. By the time we had done that, it was clear that 1) little one was too exhausted to get anything useful out of school today anyway, and 2) I was too exhausted to fight with him anymore. So we came home, where he has been sleeping ever since. This does not bode well for getting him to sleep tonight, but I am making the most of the peace right now.

Fortunately, school were pretty understanding about him skipping a day, since I have had lots of meetings with them in the last few weeks to try to get them to understand some of our challenges with his behaviour. He does really well during the school day, white knuckling his way through all the restrictive rules, and lack of sensory input, but then explodes with energy and frustration when he gets home. Bedtimes are a particular challenge - always have been since he was a little baby and needed to be rocked and bounced for hours every night, and probably always will be. Recently, things have been worse than usual, though, and, maybe more significantly, I have just got tired of the battles. Eleven years of trying to manage 2-3 hour bedtime battles with no respite, no matter how well we understand where it is coming from, is just exhausting, and I am at a low ebb.

The irony is that although I have been struggling to keep it all together, I was starting to feel as if I was making progress, and things were on the upswing again. I had had some productive meetings with school, and they were doing some things both in the short-term to help little guy in the classroom, and in the longer term to coordinate with the secondary school that he will be entering in September. Also, he has been at that secondary school for a couple of days of induction with the rest of the incoming class earlier this week, and that seemed to go well - he will never admit it, but he seemed tentatively excited to have a little more independence, and we'd found out his form teacher is going to be a young, energetic, male PE teacher... thank you to whoever thought that one through for us. So I started off yesterday tentatively optimistic... dressed in a cool, flowery top that made me feel the right combination of hip and professional, and ready to face the world for once.

Before it all went wrong...

Ahhhh... hubris. Today, I am a dishevelled and sleep-deprived mess. And I feel like the world's worst parent for letting things get so out of hand last night, and only being able to think about my own grief and pain.

But... you know what? As bad as I felt this morning, I have had some tea, and some rest. I have decided to let go of that belief that I must get the kids to school EVERY SINGLE DAY NO MATTER WHAT OR I HAVE FAILED AS A PARENT! (Sorry for the caps, but that voice in my head can be awfully strident). A friend stopped by for a cup of tea, and said all the right things about how we all feel like we are failing as parents and reassured me that I am doing all the right things. (Thank you, Suzy!) And I am writing again. For the first time in ages. Which is definitely a good thing. I am pressing the reset button. Now back to my messy, complicated life... See you all out there...

A Staged Retreat

Oscar welcoming us to Somerset

After a very roundabout route, the boys and I are now in England. In Somerset, to be specific, hanging out at my parents' lovely house in the country, nestled into a hillside (a bit like a hobbit hole) with a few other barn conversions in the middle of a farm. There are always lots of opportunities here for long country walks with their Border Collie, Oscar, as long as you don't mind dodging cows and fences. It's a great place to find our bearings, and get over our jet lag, which was significantly worse than usual.

The Pier at Kitty Hawk, NC

I attribute the worse-than-usual jet lag to the crazy few weeks getting ready to leave, and then our tour of the East Coast of the USA. We actually left Columbus on the 18th, and headed to Baltimore for a lacrosse tournament. Then we drove down through Virginia to the Outer Banks in North Carolina for a brief family vacation, before flying out of Charlotte. It was tough saying good bye to the dear husband in Charlotte, even though it makes sense to divide the family, so that we can work on the move from different sides of the Atlantic. He drove our car back to Columbus, and has been working furiously to get movers organized, patch up the house ready to get it on the market, and get the pets booked on a flight as the next contingent of Allens to cross the Pond. As I keep telling everyone, this move is a staged retreat.

 My goals for this week, apart from adjusting to the time and culture shift, were twofold - organize some sort of transportation, and get mobile communications up and running. My Mum and Dad were gracious and generous enough to get the former organized before we arrived - my Dad met us at Heathrow with our new car, a sleek, silver Peugeot with lots of space for lacrosse (and other) equipment. He had picked it up at a car auction a week or so ago, and he and Mum had worked hard to get it repaired, cleaned up and equipped for our use in time for our arrival. So far so good... we are lucky to have such great family help.

Setting up mobile communications, however, has been a disaster, and has still not been achieved, thanks to the stubbornness and vagaries of our US cell phone carrier. Apparently, they don't want to let us go, which would be sweet, except that it is costing us a fortune and we still can't use our phones over here until they unlock them for us. My poor husband has spent hours on the phone with them negotiating, explaining and arguing with various levels of bureaucracy in the company to get them to release our phones for our use now that we live in a different country. In the meantime, I have been spending time and money getting new SIM cards and trying to get them to work with new service contracts, only to be repeatably be told that "the computer says, 'No!'" because our phones are still locked. The great thing about this type of message, is that it locks the phones completely, and prevents us from even using them on wifi.

This is all very frustrating on several different levels - first and foremost because we are now paying two different companies for mobile phone services on two different continents, and yet we have no usable phones at all. But it is also quite disturbing (not to mention inconvenient) to try to function without cell phones in this day and age. I am ashamed to admit that I get quite anxious about not being able to stay in touch with the world while I am out and about, and away from any wifi. Not surprisingly, there are not very many wifi hotspots in the middle of cow fields, or at the beach. I can make all sorts of excuses for this anxiety, such as the need to be able to stay in touch with various members of the family as we make all these arrangements, concern about being separated from the boys without any way to contact them, and the inconvenience of not having a contact number for application forms for driver's licences, British passports and pet transportation arrangements. All British bureaucracy seems to assume that you have a mobile phone number these days as a primary means of contact, which is challenging. However, really, as much as anything, this anxiety is born out of the habit of connectivity. It's almost as if my brain has been rewired, and I find it difficult to function without the internet in my pocket. I have even had to resort to reading maps to find my way around the countryside again - something I used to do regularly with competency and enjoyment, but which now makes me anxious. In the middle of all of this, therefore, there is a lesson in learning to be flexible again in all of this. But can I please get over my jet lag before I am forced to flex my brain?

I'm back... and we're moving to England!

I had lunch with a friend today, and he was asking me about my blog. Which, of course, made me realize how long it has been since I actually posted anything on it. Looking back, a LOT has happened since I last posted... for a long time, the only writing I felt I could justify was work that contributed to my dissertation. Then, when that was completed, and I graduated in August of 2013 (yay!!), I couldn't bring myself to write anything else for a while. The next thing I knew, I was swamped with too many administrative responsibilities at work, some difficulties in my personal life, and no time, energy or inclination to write anything other than in social-media bite-sized chunks.

In the meantime, my family's lives are about to change dramatically. We are moving back to England!! My brilliant husband was offered a brand-spanking-new full professorship at the University of Cambridge, which is not something you really turn down. I just read something this weekend by the wonderful Caitlin Moran about how jokes are often dreams in disguise, so when I tell you that when I met my husband, he used to joke about being a professor at Cambridge one day, you may understand how deep that dream ran in his psyche. He also used to say, over the years we have lived here in the US, how the only way he could imagine moving back to England would be for a full professorship at Cambridge. But despite all those signs from the universe that this was "MEANT TO BE," there seemed to be an awful lot of obstacles to actually making it a reality when the idea was first aired last Autumn. Some of those obstacles were eliminated by the university meeting most of husband's most significant demands for the position itself, some more was cleared when we found a great school for our oldest son ("The Scholar"), and he aced the entrance exam, and yet another chunk was cleared away when we found some connections to the lacrosse community in England for our youngest son ("The Athlete"). Well, today, another very big piece of the detritus littering the path ahead was cleared with a job offer for me as a Senior Teaching Associate at the university. Very exciting stuff. Let's hope I can live up to the opportunity.

My anti-romantic life

It is time for confessions... I am the parent of two wonderful, special children, one of whom has been diagnosed with "special needs." Those of you who know me as a parent, may know this, and wonder why it is a big deal for me to build up to a big "confession," but anyone who knows me in a more professional setting may be more surprised by this piece of information, and even more so by my decision to write about it today. I think that there is a lot of pressure in western society to compartmentalize our lives, and, specifically, it is, in my humble opinion, an implicit imperative to keep our family lives "private" or "hidden" in our places of work, especially, if you want to be taken seriously in the "boys' club" of academic leadership.

That may sound dramatic, but I have had conversations with peers or supervisors about "other women" who have talked too much about their kids or needed too much time off for their families. I have seen the rolled eyes, and heard the dismissive comments. I am smart, I can take a hint... it's okay to talk about how cute your kids are occasionally, and even make a passing comment about how crazy your life is, but just don't go ON about it too much. I feel churlish writing that, since we have come a long way, and I am VERY fortunate to have flexible work hours and a very sympathetic boss who has kids and a wife who also has a career in academia. He is always understanding if I have to work from home because of a sick child, or leave early for a dentist appointment. I am also blessed with an office mate who probably knows way more about my family life than she would ever want to, and is always a sympathetic ear nonetheless. And last, but definitely not least, I have a loving husband who does his best to contribute and pull his parenting weight. But still I feel that I can't really talk about my family's struggles, especially when things are not going smoothly, if I want to be taken seriously at work. Maybe that is just my perception or problem, but that doesn't make it any less real for me.

And of course, children with special needs add a whole extra layer of taboo. Western society is implicitly elitist, with fairly narrow definitions of success and appropriate behavior, and as long as children fit within those narrow performance parameters, privacy is respected and maintained, if not actively enforced. But if your child is different in any way, especially if they can't be pigeonholed into a fairly limited list of labelled "types" or syndromes, then it is all too easy to start to feel inadequate as a parent, and that enforced privacy can make you feel very alone, or even ashamed. There is very little sense of community support for parenting "difficult" children, and although services are available, the onus is on parents to seek them out and advocate for their children. This can be very time-consuming, and is emotionally very draining. Couple that with the perceived imperative to leave your family problems out of the work place, and it is all too easy to end up feeling stressed and overwhelmed.

Both of our sons are academically very bright, so they are often rewarded for their apparent school success and achievement. But our younger son also has some fairly significant difficulties with integrating and making sense of the world. Amongst other things, he craves and needs almost constant sensory stimulation, especially in the form of movement and deep pressure and tactile input. It is very hard for him to sit still, or settle at bedtime, and his greatest relaxation comes from running, and crashing and moving, or, deep squeezing and hugging. We have been very fortunate to find great occupational and other therapists who have helped us and him to understand this better, and find ways for him to find the exercise and sensory input that he needs. Sports are a great outlet for him, and he spends every spare moment outside, weather permitting, practicing his favorite skills. After a long, and busy day, when most of us just want to collapse on the sofa, he will de-stress by going outside and pounding a lacrosse ball against his rebounder net, or shooting a soccer ball into the goal over and over again. He will never choose to relax or keep still, so he hates going to the movies and long trips where he can't move and run around. He has made incredible progress in being able to manage these needs so that he can attend school, pay attention and flourish in the classroom, although you will often see him crossing his arms across his chest and giving himself "squeezes" to self-regulate. But sometimes, and especially recently, he just sort of melts down when it all gets too much.

After what felt like a long winter, and a very rainy spring so far, his frustration level with not being able to go outside enough is at its zenith, and his tolerance for being thwarted in any way is at an all time high. Since he doesn't do anything by halves, when he loses control, he really lets loose on whoever is in his way. Fortunately, he understands when and where it is "safe" to do this on some level, so we have only had to deal with this behavior at home so far, but it can be pretty terrifying to behold, and recently it has happened a couple of times with our babysitter. To say that it has disrupted the dynamic of our family, is an understatement. So I find myself, after a few years of feeling like his needs were being managed appropriately and adequately, casting around again for support and interventions. This means asking for help, calling psychologists and counselors, filling out endless paperwork, explaining and justifying every little detail of our family life to relative strangers, and always, the endless scheduling and waiting for appointments. So when my PhD advisor expressed concern with my progress on my research proposal, I did what any reasonable, graduate student would do under the circumstances - I started to avoid her.

To paraphrase Talking Heads (yes, I know I am showing my age...!) "this is not my beautiful life," this is NOT how I planned things to be. One thing that I have learned is that avoidance is not a good tactic - it just causes more stress, and, ultimately it comes back to bite you. But that is what I have resorted to simply because I just don't know what else to do. I have been so socialized not to talk about my stress and worry, not to mention the time taken up by our little guy's problems, that I don't know how to talk to my advisor about my lack of progress. I just keep thinking that if I just have a few more weeks, I could pound something out that is really impressive and then I won't have to explain why I have done so little up until that point. But, as I am discovering, that is a really good recipe for writer's block - fatigue, stress, and unrealistically high expectations.

So when I came across a book yesterday, (when I was supposed to be working on the aforementioned proposal), called, "The Anti-Romantic Child" something deep inside me resonated with both the title and the description. Priscilla Gilman describes, in far more eloquent and beautiful terms than I can, the process, frustrations, delights and challenges, of finding out about her child's special needs, and how she learned to understand and love him, as well as advocate for him. It is a beautiful book, not least because it is interspersed with quotations from Wordsworth, the subject of the author's own PhD dissertation, and she makes a compelling case for Wordsworth's ability to illuminate the loss of childhood and innocence, and his advocacy for us to be able to welcome and accept the outcast and those who are in some way different in our lives. I sat there, in OSU's very imposing main campus library, and could not put it down. I felt as if someone was transcribing my heart onto the page, through the mirror image of her life and words, and that gave me a sense of community and insight.

I am usually too cynical to write fan letters, but I did post a brief, heartfelt message on the book's Facebook page last night. To my delight and surprise, Priscilla responded, kindly and generously. It is so good to reach out and find others struggling with the same or similar problems in the world, and to feel welcomed into a community of sorts. But what also inspires me about Priscilla's book and message, is how open she has been about her family's issues and struggles, as well as the difficult choices that she has made about her own life and career in response to them, and how that has brought her closer to peace and fulfillment. It gave me hope, and it made me brave enough to try, in my own small way, to talk about the personal story of my family in a more open way.

Now, I just have to get back to writing that research proposal again.