10.18.2012 A Year of Change

Max discovers the mysteries of the sprinkler in his new backyard!

If I had a shiny penny for every tear shed, every sigh breathed, and every giggle sprinkled throughout our life over these last few months, I'd be a wealthy woman....a very tired one, but buried up to my eyeballs in pennies....OK, maybe not that wealthy, unless I melted them all down...and made a tiara or two. At least that way I'd look like a million bucks. As with most people who live with small children, or a pet fish and a cell phone, a lot can happen in a few months time and indeed this couldn't be more  true than in our own life.  It has been a few months, (actually eight), since I've had enough time to sit down and write...or perhaps more accurately, sit down to write with enough courage to document the excessive recent changes in our crazy,  we-like-to-have-a-predictable-plan-even-though-it-never-is, family. So now that life is starting to take on a recognizable rhythmn again like the waves on a beach, it is once again safe to enter the water...the sharks have left for the deeper oceans for now!

The prospect of moving used to be one that was adventurous,  surrounded by anticipation, excitement and curiosity. That was of course in the days when all of my belongings fit into a station wagon and children were something that other, older, less-wise people had... Hmmm. At this point in my life, I have one feeling about moving...it stinks. And moving from one place to another knowing that you are going to have to move again at least once before you are done, has even less appeal. When we packed up our home, the car and the moving truck back in CA just over a year ago, we knew that it would be a bumpy and interesting journey even if we weren't quite sure where it would take us. We landed in a perfectly fine rental home in Masachusetts that was two floors, (not ideal when one of your children can't really see and doesn't walk, but otherwise suitable), and we made the transition from a pioneer-inspired West Coast, (read: sunny, laid-back, independent, vegetarian, year-round routine) to the land of the Ivy League and the Red-Sox, (read: more snow, more rules, more meat, more seasons, and more traffic). Once we figured out the necessities, like doctors, schools, and grocery stores, we eventually figured out the real essentials like kettlehole ponds, blazing sunsets in the autumn, boulders as big as a house, the closest beach and the pleasures of grass that doesn't need to be irrigated. Needless to say, while the cross-country move was dramatic, it was tempered by the great neighbors, the beauty of the New England landscape and our busy schedule....time to sit back and relax a little bit, let things settle down, relax....right? Are you kidding?

It is only a matter of perspective that keeps the daily activities of life  in the "tragic", "funny", "ridiculous" or "typical" column, and we have done our best to move between the them often so as not to get to comfortable with one way of coming to terms with the fact that - THINGS CHANGE. The reality is that when you have a child with significant special needs in your family, ambiguity is something of a blessing and a curse simultaneously, so you get used to it. It's the rest of your life, - the "non-special needs part", that you think you understand sooooo well and that you have sooooo much more control over that gives you the vapors when it is less than predictable. Or rather less-predictable that you think it should be.

So after several months of carrying Max up and down the stairs a few times a day, (one of the fringe benefits of having a child with mobility disabilites of any kind - and any mom will tell you this is true - is that you get arms that look better than Michelle Obama's. No flabby bits anywhere), my husband and I start having the conversation we have been trying to unsuccessfully avoid. (Living with Max, this often is the case with topics we try to avoid....we can't.) We look at each other and say, "Now what?" The answer was always obvious, and we knew we needed to move...only this time needed to be the last time and to a house that we could stay in long term that would work for our entire family both the typical members and the atypical members...

So we did. Again. It wasn't as fun as I wanted it to be and yet it wasn't as awful as I expected it to be. There have been moments over the last few months that I will most definitely relate in all their glorious detail here in another post - things like 'how to find the perfect house for five family members that each think their criteria are the most important...on a budget of course', or, 'how to keep your five year old deaf-blind son from escaping through a second floor window because he's figured out how to open it and you're too busy packing to notice', or 'how much you love that your five year old deaf-blind son that doesn't walk has learned how to navigate a staircase backwards and upside-down', or 'learning that your daughters really like to climb trees', etc.....It took a lot of time from start to finish, but then I am not moving again and I wanted to be sure we were making the best decisions we could, given that our crystal ball has been broken for a while. Max and his two sisters endured the boxes and disruption in their environment, but this time far more of their routine stayed the same, as our moving truck only needed to travel one mile from one house to the other. Finding a home that we could afford, that Max could navigate safely and that could be all that we need now and all that we hope for later was not easy but it was possible. We had the help and support of family all along the way which made all the difference and we are incredibly grateful for it. In the end change was good and now that the boxes have not been packed but rather snapped up by the box-hunters that lurk on Craig's List, it is time to get back to this blog and reflections on life in a family with Max.

Looking very hard at a bath toy, the tub is a favorite place in the new house.

02.03.12 The Power of Words

Now that the holidays have passed and the resolutions have been both made and trespassed upon, we are ready for the new year and we have a fire in our belly. I have the pleasure and privledge of living with my family in a place that has a long history with and deep respect for words...and not just words for their own sake but for the nuanced meanings that they are capable of imparting, and the power that they wield when organized well. I live in a place where people are almost universally familiar with Thoreau and Emerson and Alcott, and respect the specificity that a particular word's meaning can bring to a description or an argument or an understanding....I live in a place where I am consistently reminded that one's words will far out-live and define a persons life long after that person's body has returned to the earth. Our words, it seems are what will be remembered, and if deeds are what we leave behind, then they too need to be spoken or written of to remain a part of the human story. So I find myself wondering if one has no words, will they be remembered? What kind of impact in the world can one have if there are no words to carry and lay down like so many bricks, eventually building a path to last into the future?

I spend a good deal of my time with Maxwell trying to understand what he wants or needs because he has no words. Max uses signs that are effective for communication if someone is paying attention, otherwise they float off into the ether like smoke in the wind, almost as though they didn't exist at all. This completely stresses me out. His signs are like little gifts and I want to be able to recieve every single one, not to mention reward his efforts with a response in the hopes of encouraging another try. The irony is that Max traces the steps of literary illuminaries almost everyday and yet can't add his two cents to the ongoing dialogue of life...and I imagine he would have a lot to say.Perhaps that is why people like myself have such a stong impulse to speak on behalf of children like Max, to insure their place in the memories of the communities in which they live. Parents of children like Max, children that have atypical means of communicating can make the mistake of speaking for their child in a way that channels this desire or rather this fear of inconsequence, and over-step their good intentions of communicating effectively on the child's behalf. Can you blame them? Words are powerful.

Maxwell has always used a method of sign communication which entails someone using either an exact or adapted sign on his body or in his hand. More recently we have been using simple signs in front of Maxwell's face, as he becomes better at using the limited fields of vision that he has. We are having limited success and think that he is capable of so much more. His educational team and I have talked about including another method which uses touch cards for different objects, conditions, or places...basically we will be creating cards that have a physical object or textured area that is representative of the object. It is an interesting task to set out for oneself, to make a unique texture for every noun or verb you can think of... and then glue it down to a card so Max can use it to request or identify something. I suppose we are lucky that Max doesn't have an enormous vocabulary! Words will be transformed into objects. We have used a method like this with Max until now, just not in such a structured way. The prospect of an expanded ability to communicate is very exciting. Communication is the key to everything....and it need not be with words. That much is so very clear! But I still can't help but think about the impact of his missing words...of how they could cut a path for him to travel or be relevant long after I am gone...In the meantime, I'll just keep writing!

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!