Thursday, October 18, 2012

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 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.

Friday, February 3, 2012

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!