Sunday, November 20, 2011

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 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.

Monday, November 14, 2011

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 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 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.

Tuesday, November 8, 2011

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 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: and kep another child from the statistics sheet. STOP CMV!