12.19.11 In Praise of Repetition

I remember reading a collection of short stories by Jorge Luis Borges and coming across one of many thought-provoking concepts that he so brilliantly lays bare through decriptive narratives of fantastical journeys and complex spaces. The idea that has stuck with me for so many years is this: that one cannot accurately evaluate much of anything unless one has had multiple experiences with whatever it is that one is trying to figure-out. In other words, you need to do something at least twice before you can begin to comprehend what it is you are doing, let alone to be critical of it...the first time an experience of any kind is had, whether it is of riding a roller coaster, or tasting lemons, or touching an long-hair angora cat, your brain and your body are processing the sensory information and gathering the data necessary to even have an opinion or an agenda for some action...such as deciding to ride the coaster again or throw-up!

When I watch Maxwell do something over and over and over again...I think of this idea. It used to have a meaning for me that lived in the world of architectural criticism or within my own professional understanding of iconic buildings or landscapes that I really wanted to either like or dislike. I would try to think of this idea and give myself permission to turn off the churning,critical,analytical part of my brain and just visit, really visit the place and let all of its detail sink in on a most basic of sensory levels...before coming back and tearing it to pieces with my critical eye. It was a conscious act, a conscious re-tracing of steps, of re-visiting a place both literally and figuratively.It is amazing what you can learn when you allow yourself to listen, watch, taste, feel, and smell with out the distracting chatter of thoughts...I almost can't do it. Max on the other hand is a natural.

In his effort to achieve even the simplest goals, Max will repeat an action a hundred times, in the process sometimes learning something new. For example, he will try to pull himself to a stand at the table...over and over and over again, slipping to the floor each time his legs buckle with fatigue beneath him. He will cry for a minute and then try again. Suddenly he realizes that when he does this, his stocking feet are actually sliding on the wood floors which is making it difficult but also somewhat enjoyable...he starts to giggle. It has become a game and he is in control. He does it again. Now he is giggling so hard that he can barely hang onto the table.

This tolerence for repetition is what makes it possible for Max to do break-dance style back spins bewteen the wall and the stair rails and never hit his head. (I think he lived a previous life in an 80's nightclub!) He has taken the time to learn by repeating and repeating again a series of movements that when put together add up to a sensory experience that he loves...getting dizzy! As a parent I watch this and am hopeful that there are more useful tasks that Max can learn,(not that break-dancing is entirely futile), and I begin to think about what they might be...Then I observe him as though I were watching someone else's child and I find myself thrilled at the patience he has for the light reflecting off a spoon, or a ray of sun on the floor or the texture of a bump in the carpet. I picture his little brain laying down a memory track, grooved deep, the information he is collecting writing itself permanently for some future use...

12.06.11 Sisters!!!

Anyone that has ever grown up with a sibling or two or three, knows that since you don't really have a choice in the matter, you learn to take the good with the bad and vice versa.(Or you just travel a lot...!) Even hitting the lottery has its pros and cons, so why should a guarranteed lifelong relationship be any different? A fantasy is always a fantasy until you have to start living it. In an ideal universe the lessons created by the rivalries, negotiations, hair-pulling, head-locks and finger-pointing of a sibling relationship should balance out with and give way to a more benefical, loving, and productive set of social and emotional experiences...Ideally....and then the sky falls down, if only temporarily and then "ideally" doesn't seem like such a good idea anymore.

I have to honestly say that while I still harbor a place in my consciousness that remains heartbroken over the loss of a typical, (read: ideal/fantasy) "brother" experience for my two daughters, I am unfailingly curious to observe their lives as they get older with Max in their orbit. Sometimes I wonder...Will they be more empathetic with others? Will they be drawn into the complex medical and neurological aspects of our dinner conversations and make career choices accordingly? Will they be OK inviting teenage friends over to the house if Max is present? Will they hold a grudge against him or me for the kinds of compromises our family is required to make? Yes...These are silly musings and somewhat unproductive. This is their life and they will make the best of it as we all try to do. However, I experience a joyful little leap of my heart when I feel like I can connect certain, more altruistic behavior in the girls with their direct relationship with Max. Like learning more than one language from birth, their role, as citizens of the globe that are tolerant of our human differences, will be natural. Max has given them a gift and neither of them know it.

It is hard enough for me as a grown,fully mature,(at least I like to think),adult to reconcile the efforts I put into my relationship with Maxwell vs. what he is able to reciprocate. I sometimes cringe when the girls try to elicit a reaction from Max and get nothing in return, or worse, a piercing cry of confusion. I worry. Will they try again? And then from out of nowhere, I hear my 6 year old explain to a friend visiting for a playdate that Max caught a virus and that his ears and eyes are broken, but that, "He's just Max"and "He's my brother." Or I watch my 3 year old strap her giant pink hippopotamus into Max's wheelchair and try to feed it dinner, after first wheeling it around the house of course. I regularly underestimate the girls capacity to recieve and decipher unspoken emotional messages, facial expressions and the volumes that are hidden in a tone of a voice or cry...and I remind myself that Max is indeed lucky.

11.21.11 A Matter of Support

We all need support of some kind, whether we are raising children, holding down a difficult job, remodeling the bathroom or even getting a new haircut. Garnering the right type of support and having it delivered in a manner that is actually useful, (a screwdriver isn't helpful if your holding a nail),  is a far trickier scenario than just asking for a hammer. Despite the circumstances of my life, I am still not very good at asking for help. Often, I know I need support, but sometimes I am not sure what kind of support I need. The opposite can happen too, when I know exactly what I need but can't find the right person to provide it. (Like looking for a hammer and coming up with a pile of screwdrivers.) Clearly, this situation is not exclusive to parents of special needs kids! But when we do consider how real support plays into the life of a family raising a child with unique challenges, it can explode into a wild octopus of a discussion with politics, finance, educational systems, medical diagnoses, fraud, cultural expectations and personal boundaries all fighting for a sliver of airtime.

I can at least open my mouth and ask for help. Max cannot. Lots of kids just like him have limited means of communicating a specific need and rely on their families and professional teams to interperet their signs and signals. It pays to be a good observer and watch for patterns and small gestures, tiny movements that might seem like nothing but really mean, "I'm starving, feed me now!" or my favorite, "I'm going to throw-up." Support can and does mean a myriad of things to both a special needs child and to that child's family. Maxwell is well supported on a number of levels. Is it possible to be over-supported?  Well, in Max's case probably not because we have so many challenging facets of Maxwell's life to focus our energy. However, very often we use a trial and error process to determine exactly what he needs. This can lead to interesting results and even more interesting, not to mention expensive, collection of stuff. Right now, Max's cerebral palsy is getting a lot of attention from all of us and the 'support' is getting laid on thick! 

Max's new support accessories...

Maxwell recently had botox and phenol injections in his legs and hips which provides a window of time for us to stretch his muscles without the contradictory messages of his brain to interfere. It is typical that the medical team will work to maximize the time his muscles are in an extended position and cast or brace the child's limbs...24/7 stretching! Once the muscles are stretched out, the child will still need bracing to help maintain the newly elongated muscles and support their body while they learn how to actually use those muscles to do things that we take for granted, like walk, sit up straight, and stand. This is 'support' in the most authentic sense of the word!

I am amazed at the high level of tolerance that Maxwell has for his new accessories, some of which he has to wear at night! He has quite a collection and needs to wear most of it together...kind of like his little sister, Flora Bay's dress-up policy....wear everything in the drawer...at the same time. Being that this is Thanksgiving week, now would be a very good time to say Thank You to all the amazing people in our life at the center of the stage and in the wings...a supporting cast is what makes the star shine...and Max continues to do so thanks to you. We are grateful always but especially so this week. Happy Thanksgiving!

Max getting used to his new hip-brace.

11.14.11 Traditions

We all grew up with traditions, right? The Christmas dinner, the Thanksgiving football game, the New Years Day resolutions...there are a myriad of ways that traditions help us celebrate. The holidays are a time when those traditions are usually embraced and work to kind of connect the dots of your life and remind you that you belong to something bigger, something more important than a date on the calendar or a mob of determined shoppers. Well, just like most other things in a family's life upon the arrival of a child, those holiday family traditions often need to be, let's just say, adjusted slightly. In the case of the special needs child, it often means not just hanging the glass ornaments on the Christmas tree a little higher for a few years, but rather the whole tree...and when it gets to come back to the floor....is anybody's guess. This is where it helps to not only be creative, but also to be ridiculously optimistic. "Who said you can't hang a Christmas tree on the wall anyway?" One look in a current Crate and Barrel catalog will give one a number of good ideas so this is one change that is fast becoming trendy....However, the holiday family photo, you know, the one that is usually of just the kids and then gets plastered on at least 40+ holiday cards and mailed around in substitution of a REAL greeting card...is alive and well.

Everyone is older now, but things haven't changed that much!

This is probably one of the moments during the holidays that Maxwell's disabilites are at the forefront for me, weirdly enough. (This is of course beside the moment when he quietly makes his way onto the unsuspecting neighbor's living room coffee table and starts doing his break dancing spins, leaving anyone witnessing such bravado with feelings of both admiration and horror, not to mention anything that was on the table now on the floor.) I think this aspect of the holidays is difficult for me because I am in a position to take a part of my life that is for the most part 'normalized' and present it to an audience for whom it is not normalized. I could just not send photos it is true, but I am also hell-bent on making sure that Max stays in the picture...literally and figuratively when it comes to our circle of family and friends.

It is hard to take a photo of Max that conveys his likeness accurately. His eyes move around, often rolling back just a bit too far, his body positions are often akward, and capturing this moment is not only a "come to Jesus" moment for me every time it happens, it is also not really the way he is in real time. Seems simple enough to get over in the short term, yet it is so much more than just a portrait of your kids I've come to realize. Captured in that photo we send 'round the circle of family and friends is a story. It contains a narrative of how we want to be percieved by others. It is a photo that is chosen for some reason or the other, whether it is the one that makes mom, (who is usually the one who does the cards), look the thinnest, or the one that shows the happy family-together vacation, or the one that the professionals took of the kids all gussied up or even the one that is purposfully low-key and casual. No matter how you look at it, there is more riding on these holiday photos than just a random graphic update. This idea, while not something I spend much time considering at any other time of the year becomes present for me when I have to choose a photo of Max. I find myself struggling between a photo that makes Max look less funky, (eyes straight ahead for example) and one that shows him in a happy place( usually upside down with a spoon in his mouth)...sometimes I am lucky and I get both...but it is rare.

Getting a good photo of all three of our kids at the same time is nearly impossible. We've tried all different ways and it was easier when Max and his little sister were younger, so for now I go about my holiday routine not necessarily thinking that I will get one, but I keep trying... on the off chance I'll catch a moment. Sometimes it pays off in interesting ways to be an optimist.

11.08.11 What happened?

Every once in a while I have to remind myself that not everyone knows or remembers the reasons why Maxwell is the way he is... well, besides his stubborn streak, (definitely his father's gift), and his winsome good looks, (most definitely his mother's contribution), but rather his atypical journey through life with the  most challenging chapters ahead.

Maxwell was born as a well-baby after what seemed an uneventful pregnancy, the second of what would be three children. The pleasant breezes of contentment and hope that blow in the wake of a baby's birth lasted only a few precious hours before the hurricane arrived and swept away everything that I recognized. Maxwell was diagnosed with congenital CMV. CMV is short for cytomegalovirus, and while I had never heard of it nor had my ObGyn warned me about it, I have since learned that it is the most common cause of birth defects and childhood disabilities in the USA. Max had sustained brain injuries that left him profoundly deaf, blind, developmentally delayed and with cerebral palsy. To say that this research-crazy, hyper-responsible, well-informed mom was stunned is an understatement. I felt like I had been hit by a bus. Why hadn't I known about this and how did it happen?

Max in the moments before his symptoms became clear.

Well, turns out that lots of people know about this nasty virus, they just don't happen to be the ones taking care of pregnant women. To make a long story short, I likely contracted the virus early in my pregnancy with Max, ( I remember being ill for about three days in my 11th week, for which my Dr. at the time prescribed a sinus decongestant), and I contracted it from someone I love. CMV is passed from mother to unborn child, especially but not exclusively if the mom has never been exposed to the virus before. You catch CMV through the transfer of bodily fluids like urine and saliva....and what mom doesn't change a diaper and occasionally forget to wash her hands or share her toddler's food in an effort to get her to eat? Toddlers in day-care are quite prone to this and other viral infections. Their immune systems being fully intact, unlike a growing fetus, are able to fight off the offending viral invaders with no lasting effects.

In all fairness to the ObGyns out there, CMV is unfortunately not on the list of things to test newborns for after birth. Children that are infected with the virus and suffer disabilites such as deafness, microcephaly, seizures, and cerebral palsy are not identified until the mom is out of the care of the OB. It is the pediatricians that get the case when the children fail to meet milestones and then have to work backwards to the cause, which at that point is hard to identify, as CMV is difficult to pinpoint after the body's immune system has a chance to "catch-up"...however the damage has already been done.

So, that ravaged landscape that I was staring at after Max was born, the one that was my future, my happiness, my family, and my expectations, my son...it turns out that not everything was swept away like I had thought, but it had certainly been rearranged and like a collage that you never glue down, it continues to shift over time. Perhaps it is because I never liked to glue down my collages anyway that I see the color and light in all those aspects of life again. It is too easy to imagine that the grass is really greener on the other side. We've all been there and it never is...!

In the meantime, I do harbor a smoldering fire for what feels like revenge, (if you can feel this way about a germ), when it comes to this virus called CMV. It is very preventable. If you are reading this and you know a woman that is thinking of becoming pregnant or newly pregnant, inform her...get the facts...and WASH YOUR HANDS! Visit the website: stopcmv.org and kep another child from the statistics sheet. STOP CMV!

10.23.11 A Body in Space

A different perspective of the bathtub

There is a philosophical idea that we geeky, architectural types like to think about when we are not busy designing our way out of debt and it goes something like this: We humans are very used to thinking of ourselves as naturally correct and go around our universe using ourselves to "measure-up" our enviroment. In other words, the Leaning Tower of Pisa wouldn't be considered 'leaning' if we all walked around leaning too, nor would it be nearly as interesting! On an even more abstract level the idea is that we actually project our idea of ourselves onto things and into the spaces of our environment to get information and understand them. Now, I'll stop here with all of this and get to my point...

I wonder if being upright in the world is ever so slightly over-rated. Granted, there are distinct advantages to being upright, feet to the floor, faces to the sun like the pansies in the garden, but it is hard for me to fairly compare any other position's advantages, because I usually don't spend much time say...upsidedown. From a different vantage point, who is to say that the underside of my coffee table isn't the beautiful landscape I see in the stains that I find there, or that the ceiling fixture in the kitchen that I've been wanting to replace is just fine from the floor. Give me a glass of wine and I would never have to redecorate from down here on the floor.

I was watching Maxwell hanging upside down this week. He had gotten on top of the little round table in the playroom and was doing breakdance-style spins on it, taking a breather every few spins to hang his head backwards over the edge. I started to think about what things would look like if they measured-up to his 'projections' of himself into his surroundings. If I could design a world that fit his understanding of himself, what would that look like? Do the things that are made to "make sense" to upright people have meaningful purpose for Max the way they do for us? The legs of a chair are more like the poles of a tent, the front door is more like a hole in the wall that appears every so often, and the ceiling is canvas of patterns and shapes...

This week Max is scheduled to have a procedure that requires chemicals to be injected into his legs with the aim of interrupting the mis-guided messages being sent from Max's injured brain to his confused muscles. It will provide a window of time in which we can dive in and stretch out Max's muscles and head-off a more invasive surgical correction. Another peripheral advantage is that Max will have a chance to experience the world from a more upright position and hopefully feel comfortable enough to stay there! Where we go from there, we have to see...

Max continuously offers up opportunities to ponder a far more surreal and perhaps interesting microcosm of a universe, and with any luck, I may just have to look a little harder. I may just not be doing it from the floor as much!

10.12.11 A Parent's Concerns

It's all relative isn't it? What makes a parent concerned that is. In the pediatrican's office you are often asked if you have any concerns. In a parent-teacher conference you are always asked if you have any concerns. Even in a place like a children's museum or a water park, you are asked if you have any concerns. As a parent in general, concern is par for the course, it is part of what makes being a parent such a full-time occupation, whether you are with your kids every day or if you are a thousand miles away on a business trip. But when you are the mom or dad to a special needs child, particularly one with multiple challenges, the question "Do you have any concerns?" is kind of like asking  my six-year old daughter if she wants a pony or asking a fish if it likes to swim or asking my husband if he would like to sleep in on Sat. morning....Right.

So, when I go into a neurologist's office, or an orthopedic surgeon's office, or a speech therapist's office, and fill out that pile of paperwork that feels like an application for a security-clearance government job, (while the receptionist looks at you with that, "I'm so sorry I have to ask you to do this" look), and I get to the question, "Do you have any concerns you would like to discuss with the Doctor?", I never fail to to go through the same ridiculous circuit of emotional responses. Usually I start with indredulous indignation which goes something like this: "Why the heck would I be sitting in a neurologist's office in the middle of the day with my stressed out child if I DIDN'T have concerns.....Do you think that I LIKE looking at the crappy magazines and balloon wallpaper? Does anybody come here because they are concern-FREE?" Then it usually only takes me about 30 seconds to do a complete flip-flop which verges on the edge of panic and goes something like this: "If I don't write down ALL of my concerns this very second, then it is possible that this over-scheduled, too-busy-to-read-between-the-lines doctor might not have ALL the information they need to make the best determination about my child's health and therefore his/her entire future...better to write it down and hurry, hurry, hurry!" It is ridiculous, yes. I'm also pretty sure it is totally normal when you come to live with and love a round peg in a vast world of square holes....

The photo above was taken about a year and half ago when Max was still able to fit into a "bouncy seat" that he loved to play in. He was a master at manipulating his body in space and preforming aerial manuvers in this seat, that if my typical children were to try I'd have fainted. Visitors coming to the house and watching Maxwell in his element would be at first horrified and then amazed by his awareness of his body and ability to avoid ever crashing into the floor or falling out of the seat. He could feel his hair on the floor and would "measure" the distance he could bounce down before hitting his head on the floor. Max has memorized the way things feel and the distance between objects and the position of furniture and walls...playing in this seat was cake for him as long as he developed the body strength to do it over and over and over again....and he did. (His spatial mapping skills are still stunning to me.) As usual, everyone would ask the same question: "Aren't you concerned?" And in this instance I could truthfully say without a single back-talking thought badgering my conscious, "Nope. I'm not."

08.14.11 Mom's Fantasy

When Maxwell was little, smaller and younger than he is now, he came almost everywhere with us. He was very agreeable in that he was portable, cute, and never really "said" much. Before we had our third child, which complicated our family merely because we two adults were now outnumbered...the more atypical challenges we faced as a family were relatively imperceivable to the outside observer. Maxwell appeared quite typical. Most people had no idea that there was anything ary when they would stop to tell me what a lovely face he had. It was in this way, early on that my tightly held expectations for our life as a family could be maintained. There was nothing extraordinary about what I thought my family would be like. These were expectations that I felt I deserved to have and I was not going to give them up like desperate prayers in a storm...so off I stubbornly went into Max's childhood with my husband Christian right behind me.

We took hikes in the hills near our home together with Max in a pack and his big sister on foot. We went out to restaurants, (the noisy ones were best), for dinner together after feeding Max at home first. We went to the library to pick out new books while he slept in the stroller and we vacationed at the beach without missing the sunsets...I was determined to keep our family from being fractured by Maxwell's disability. All the while, I was also sure that my husband and I were the most resourceful people on earth and that we could just continue our "improvise and adapt" strategy for the rest of our lives. Surely I thought Maxwell's quality of life was better for it and our own quality of life was being maintained...or was it?

Well, I have learned that there is a good reason for the common saying "when push comes to shove". Unless you have completely mastered the art of mindful meditation which I haven't, when you push long enough and hard enough against any obstacle, real or imagined with limited progress it usually results in an overwhelming desire to shove! Shoving anything, including a stroller with a 40 pound child in it up a set of nature trail stairs (swearing the entire way - how dare they use logs and call them stairs in the forest!), because you are trying to treat your family to the calming and healthy effects of a hike in the great outdoors - is generally not good. It was a lovely fantasy while it lasted.

Maxwell is four and a half years old, and thanks to our family's double dose of Viking genes, he, along with his two sisters are simply put: large. Not only are the physical limitations becoming more difficult and my chiropractor visits more expensive, but as it turns out, Maxwell's idea of fun has evolved and become more specific too. Like meeting my expectations face to face in a too-narrow hallway, the realization that Max does not prefer to be with us over his own familiar routines makes me uncomfortable, yet feel weirdly less guilty about leaving him in the capable hands of another while we leave the house or watching him hang upside down from the seat of the living room couch for a half an hour at a time. This doesn't mean that this mother's fantasy about life with her family is completely dead, but it does mean that push has finally come to shove and it is time to recalibrate those expectations. Learning how to meditate first might be a good idea...

08.05.11- Being Max

Maxwell is a determined, four year old little boy that appropriately enough bothers his sisters during their games of "let's pretend we're horses" and "I'll be the mommy". He is also very good at keeping his mother, (me), busy. House rules get broken, especially the one that indicates that the expensive leather living room couch is not a piece of circus equipment. (At least it is leather and therefore durable.) And of course, Max like most four year old children, likes to have things his way and will successfully manipulate any worthy adult within his immediate vicinity to get what he wants. You can't hide from Max, at least not anymore...and that is where this starts to get interesting.
What is it like to be Maxwell? I've been curious about this since he was just a few days old and staring blankly back at my face which in all likelihood was a contorted picture of confusion and grief. No fun for a newborn or anyone else for that matter. Sitting in the intensive care unit in the hours after he was born, I listened to a doctor's voice that seemed to be coming to me through a thick fog. They had a diagnosis. In the end it didn't mean much compared to the MRI pictures of Max's tiny newborn brain which, even to my untrained eye, didn't look the way it was supposed to... These were dark days. The days bled into weeks and the weeks into months, the act of coping stealing most of my conscious thought. The black clouds seemed to hang heaviest over my head in the beginning as I struggled with the powerful maternal instinct to nurture my tiny infant and the dry, painful knowledge that I was only sealing my fate as the parent of a special needs child. I was a mess. Maxwell was fine.
Max is deaf. Max is blind. Max has cerebral palsy. He doesn't worry about debt-ceiling debates or even watch the television. He doesn't believe in God or fear Mother Nature. He belly-laughs at his own jokes. He is patient with the way the wind feels on his face and the softness of a sheepskin under his fingertips. He is inspired to move his body in a way that pleases himself without any self-depricating thoughts of shame or embarrassment. He never diets. Max seeks out the sun and bathes like a cat in the mid-afternoon, soaking up the warm feelings and seemingly storing it away for later use.
Granted, it's not always so zen. Max's limbs don't always follow their marching orders, often leaving him frustrated and angry with a goal unmet. Expressing himself with regards to feelings and objects and people that he recognizes but cannot name must be unknowably maddening. But, like a soldier-philosopher he'll usually change the goal and carry on. The world he lives in can be unpredictable and surprising with unforseen touching hands, unexpected and intrusive objects, offensive smells and unpleasant tastes, all of which are disorienting and threaten the safety of what is thethering him to this universe - that which is familiar and according to his own rules. Max is indeed simultaneously the king of his universe and yet like a leaf on its breeze...