Leo Clement

I think something that parents of special needs children learn very quickly is how to reject the "ideal." In fact, I believe we not only reject it, but completely remove it from the equation of our daily life. Before I became a parent, I remember being that annoying smart ass who had all these opinions and ideals as to what my kids would be like, and more importantly, how I would raise them. For example they would be perfect little angels, eat all their veggies and sleep through the night. Boy, was I out to lunch or what?  Then I actually had a kid and it was a real shocker to see all those pre-conceived opinions and ideals fly out the window along with the homemade baby food, organic diapers, and over priced baby carriers. I was suddenly faced with the fact that all my book reading on pregnancy and birth and newborns was totally useless when faced with MY actual pregnancy, MY actual birth experience, and most importantly, MY actual, larger than life, red-faced, colic...

Leo Clement, AKA: The Little Lion Man. So there is all this talk about Leo being so normal etcetera etcetera etcetera, but what does that even mean? Because for obvious reasons Leo is not normal, hello, remember his birth? The seven plus surgeries and numerous hospitalizations? The reason for this blog? Well yes. In his four year movie, ( re-watch it here, I know you want to. .) I try to stress the point, over and over, that Leo is his normal, that even though he is different from you or me, he is also at the same time, no different. I think I would believe this to be true even if he were more impaired; physically, mentally, medically, whatever, if in other words, he still wore the terminal label of hydranencephaly. In those first few grim months of Leo's life I joined every single support group out there for this condition, and to my astonishment (total newb), I learned that most of the parents and caregivers of such miracle children share this same sentiment. Eve...

Nope.  It's not my special needs kiddo who is the reluctant hero. It's not us, the parents. It's not the generous and compassionate friends, extended family, teachers, therapists or the doctors, though they all are heroes of course, but they are not the ones I'm thinking about today. It's not Batman. Today it's them.  The siblings of special needs kids. Most of us didn't sign up for the role of a special needs parent though the majority of us have embraced it whole heartedly and if pressed, will admit to not wanting it any other way if it means even loosing one atom of what makes our children who they are. Our other children though? The neuro-typical kids who are often left standing in the background: they are my reluctant and grudging heroes. We've all seen and read the articles showing those saintly sibs who do amazing feats for their disabled brothers or sisters. Wow, everyone remarks, how special that they are so generous an...

Night is when it seems like anything can happen. We humans as a diurnal species have a strange relationship with night. Sometimes we can sleep through it completely, rarely delving into the dark mystery which seems so available at times, and sometimes, we find it so alien and strange. If you are a parent of a young child(ren), then the night becomes a proving ground, much like a Roman colosseum for gladiators. Which night demon will challenge our mettle tonight? And will we be victorious? Unfortunately, as the dawn sun peeks through the window, it sometimes sees signs of failure. My husband will tell you that I turn into a "badger" at night. What he means by this is that I get really grouchy, irritable, and generally irrational, however a badger is actually a nocturnal animal, so the comparison isn't technically correct..but the sentiment is. He's right, at night all bets are off. It's no wonder that if something bad happens it always happens at night. Night ...

It's finally here! We did it you guys! T he Leo Clement #4 Edition and installment of the yearly movie! Look at all my exclamation points!  I'm excited! Seriously though, after several near misses and lots of nagging persistence, I, with the help of everyone who let me ambush, beg, and coerce into being interviewed and filmed, can finally say that success was met. At one point all hope was lost as our faithful computer of many years decided that now was a good of a time as any to journey to the electronic afterlife and take most of our files with it, and it's only thanks to the mad surgical skills of my computer whiz brother, the comp was persuaded to part from our files and give them up for transplant into another younger and healthier vessel. At any rate, now all is well, and as you will see, so is the movie. Please let me know what you think, since this is just a beginning of a greater something geared towards awareness and ultimately, a tool to help oth...

William A Garnett ( Snow Geese with Reflections of the Sun over Buena Vista Lake, CA ) My work with horses causes me sometimes, to think only in black and white terms: good verses bad, hard versus easy, simple versus complex, and so on. This kind of thinking probably seems too constricted and too naive in this age of fifty plus shades of gray: black and white seems so yesterday, you know? However, when your life depends on clear signals because everything is riding (literally) on the clearness of your signals to a thousand pound animal who if scared and confused can cause havoc and disaster, black and white is the only safe and reasonable choice.  I've been thinking lately about how we go through our life drowning in choices and options; so many things lie instantly at our finger tips should we want them. All the information we could ever want is usually only a click a way. Should we suddenly decide to change our life completely, the tools to help can appear instantly....

I really struggle this time of year. The post holiday crash is potent because of the knowledge that the hardest part of winter is still ahead. The dark and cold and the general inaccessibility of the outdoors often trigger anxiety in me, not to mention depression. My job requires me to be outdoors all year round, regardless of the weather so even though I am used to it, when the temps drop below zero, I'm dragging myself out the door by my boot straps lamenting and mourning those golden summer days. I had icicles on my eyeballs the day it went fifteen below zero (Fahrenheit) this past week Between the necessity of getting through the day without frostbite and or misery for me and my kids (though the school has recess in the gym when it's this cold) I often forget to lift up my head and find the beauty that can be found in this dark and solemn season. That is why I have Leo. Leo's new favorite word is beautiful . And he knows how to use it. He knows ...