Yeast rises and my kid falls...........

I used to think that yeast was something a Monistat commercial was built around, or bread and beer industries thrived on for fluffy goodiness and bold flavor.......silly me......

In the Autism world, it's nothing but bold, aggressive, and quite frankly a physical and culinary nightmare.

Last March my son began to giggle through the night, stim much more frequently, stopped being able to follow simple directions, stopped being able to answer questions, was having inconsolable tantrums, couldn't focus or sit still. There was every indication that it was the dreaded yeast, so I added Threelac to his vitamin supplement regime, biotin, and GSE.. One morning he woke up and told me he had the Chicken pox...thing was he was vaccinated against it...and it wasn't chicken pox, though that would have been a hell of a lot easier to deal with.....Turns out, when yeast die off happens toxins are released and he had an allergic reaction to it......How many different doctors does it take to figure out what to do? How many would it take to change a light bulb? Truth is conventional western medicine failed me. A dermatologist, a pediatrician, and allergist couldn't help me....it took a holistic doctor in combination with a DAN doctor to be able to guide me in the right direction. My son's face became 4x bigger, the bridge of his nose disappeared in the swelling. There were hives on top of hives and it was hot, and it was itchy and it was frightening.
His diet was further restricted to not include anything that could turn into sugar, and that is just about everything. Sugar feeds yeast....Soon the swelling went down and his face was restored, but it took months to get the yeast to containable levels......

Now it's back. Not to the degree where his face paid a price again, but his behaviors are up, he is a bit confused, he is a bit aggressive, he melts down, and he has a hard time following the rules.....just in time for school....Talk about earning a paycheck.....

Many may think that Autism is just a neurological condition. Where the brain is concerned it would be wishful thinking to believe that it could be so contained. But it is also an autoimmune disorder. Many people with Autism suffer from severe gastro intestinal issues, thus the infamous brain/gut , gut/brain connection. We have dealt with leaky gut, leaky kid syndrome for the longest, until we went the biomedical route. I tell you, nothing could faze us. My son threw up so often we could clean up the mess, shower him up and continue dinner without missing a beat. A NASCAR pit crew had nothing on us.

He is very well aware of what yeast can do. He has understood that he was allergic to gluten and casein and eggs, but no reaction was ever this violently carried out on his face. He has a new found respect for yeast, and he hates it, He hates the diet, he hates the hold it has on him and he hates the boundaries it sets for him. he has very little control. He hates the differences, he hates that he can't have ice cream on a hot day, or fabulous fresh fruits (watermelon and grapes his favorite), or cookies, or cupcakes.....He absolutely hates even more how it continues to create even more differences between him and the rest of his world......The difference between the neuro typical world and those with Autism is that when we lash out, it is understandable and we can identify, but when those with Autism express their frustrations, it's behavioral issues, and it's not acceptable. Living with a label can be far more limiting than you think, and not only because of the disorder.

I think of what my son is going through, but I have to confess, the start of the school year a few days away scares me as well. I wanted him to be ready to face another school year on a positive note, and I wonder how much patience teachers who do not know him yet may have, when they are trying to settle a group of excited 9 year olds who have so much to want to talk about, and so much catching up to do....and they have Gabe in the midst, trying desperately to process everything all at once. I hope time is kind to me and I can get him under control enough to be able to interact and enjoy his day.

Calgon take me away? How about Diflucan take this away!!!!!!!!! Nothing like a little yeast to get the party started huh? Makes the itchy, burning issues we ladies can have seem a bit amateurish, cause if a doctor told me that I had to cut back on the cocktails and desserts, I can assure you, I would not handle it as gracefully as my child did......despite any swelling.....which again, leaves me in awe of the courage special needs kids have, and in particular, the strength my kid has. Gabe is something special.

Happy 10th Birthday Gabriel

10 years ago today, I would have never been able to imagine what Gabriel's path would have been. I was holding my baby, completely in love, thanking God and everyone else I can think of because he was healthy. Cradling him and rocking him in my arms, it was I who was lulled into a false sense of security......

2 years later my beautiful boy would have regressed completely into Autism, a few weeks after receiving his MMR shots.

When you think of those sacred and golden childhood years, you think of wonder, excitement, discovery, every first...You think you are in the drivers seat, but you are a passenger on the greatest trip ever...a second chance at getting to marvel at the world from your child's perspective. When I think of William, and how he would belly laugh out loud while watching Spongebob and then quickly look back to share it with me, or when he would whisper his secrets, or would be completely enthralled by everything festive, every holiday, every celebration...or when I think of Carlos and how he wants to be part of everything and everyone, how he always followed his big brothers around and tried to mimic them, how he had this adventurous palate, and how he enjoyed the sun on his face and the grass under his feet...I am grateful I got a chance to hop in and be enchanted.......

It's easy to feel Gabe was robbed of a chance at a "normal" childhood. It's easy to be heartbroken because he, at 3, was being lead into a Special Needs classroom, because he had lots of therapies, because he lost all his language, because it appeared he was completely disconnected from us, because he couldn't focus or sit still, because he would tip toe silently away from anything that we could relate too or thought he should be able too, because he could not bare the feel of his clothes on his body, or the socks or shoes on his feet, or the noises that for some reason seemed too much for him...because he had chronic diarrhea and had gag reflexes an anorexic would envy.I spent his childhood years stripping everything to it's essence. Back to basics, 101. Every thing was a social story, everything was broken down into small steps. There were visual pecs schedules. There were rewards. There were reminders. There was countless of hours of play therapy. There were doctors visits, the flavor of the month specialist to go to. There were weighted vests, weighted blankets, listening therapies, jumping on trampolines, swinging, spinning, rolling.....There were dietary restrictions and changes...the list is endless....and all done with a careful eye, trying to sew the therapy and treatments into the fabric of childhood my son was to wear. This was his experience, and in the process it was mine.

Yet, the lesson that I have slowly been learning here is that every experience is not only valid and unique, it is equally important and intense. My son's childhood expectations may have been different from his brothers, but it doesn't mean that it was any less of an experience. In our quest for "normalcy" I learned that every family needs to define what that means to them. With every milestone, with every word spoken, with every simple direction completed, with every healthy stool, with every eye contact, with every gesture, with every open and close of a circle of communication, there came with it a wonder of childhood...

I struggle. I would be lying if I said that I am at peace, because I am far from it. I'm still up at all hours trying to figure out what my next step should be, what my next option is, how can I help Gabe develop better problem solving skills, how can I get him to the next level, how I can help him keep up socially with his peers, and how I can help him keep up academically now that more of a global perspective is being required. I want him to be able to have a few good friends, be able to reach out and learn to interact in a way that makes him feel comfortable but at the same time meets his friends needs as well. I want him to be happy, to be confident, to be joyful, to reach his potential....and yet keep tying that into what it means to be 10 to Gabe, as opposed to Will or Carlos......I struggle........

But this little boy who is kind and funny, loving, bright, artistic, gluttonous, innocent, and persistent, this little boy that I danced around the house with, that I rocked to sleep has taken me on a most unexpected ride. I've been challenged by him to rethink, redefine, and learn to be far more open to the natural rhythm of all things with life....I am grateful I got a chance to hop in and be enchanted.........

William

Soon he will want to venture out further than my eyes could keep watch....And there will be girls, and there will be interest...Far before I am ready to begin to even think about letting him go, he will have kissed me goodbye and raced out the door.......

But for now, my intensely cerebral, laughably twisted, artistically talented, beautiful boy is still mine. He follows me around telling me the storyline of his next comic, or the outline of the new game he is creating. He, consumed by enthusiasm, me, consumed by love, walk through the seasons, and the years, oblivious to the subtle changes......

Until one day, he smiles wide and we are eye to eye.....
Where once I used to pick him up, kissing and snuggling him ..I now reach over, brush the hair off his eyes with my finger tips, and touch his soft smooth face. I am mindful of the transitions, his face thinning and elongating, the definition of his nose, the broadening of his shoulders, the stride in his step....He is tall....His eyes remain untouched, as does his smile......still the same smile.........

He races for the door, turning to see if I'm coming. I'm looking for my keys...they are under some flyers, I'm looking for my sunglasses, as they sit on my head, I'm grabbing at my purse, no where near together, no where near ready ever.....but for now, he is mine, and he waits for me to take him where he needs to go, with a smile and a story......

Now we move on towards the Fall......not so oblivious anymore......

The Lion of the Senate drifts off to Camelot

"I hope for an America where neither "fundamentalist" nor "humanist" will be a dirty word, but a fair description of the different ways in which people of good will look at life and into their own souls." Senator Edward Kennedy spoke those words during a Speech for Truth and Tolerance in America, Oct 1983.

Thank you Senator Kennedy. You gave me hope for America. Perhaps I am too young to remember the scandals that have shadowed your brilliant career, or the vices that so many have tried to make synonymous with not only you, but apparently your lineage........In my lifetime, you have been a champion in the fight for civil rights, rights for the disabled, for education, for seniors, for immigrants, for womens rights....More than 300 bills were written by you and passed, you signed and helped pass over 500 more...You, a liberal by all accounts, expertly worked with those on the opposing side, finding always common ground to further good causes. You took your job seriously...perhaps for respect, or redemption, as some suggest.... but I suspect it was because of a deep belief in humanity, a deeper sense of responsibility, and a real vision of what we could be if we work harder. As a child I learned about the roles your brothers played in our history. Growing up, I benefited from the role you played in our lives. As a mother to a special needs child, I am indebted to the work and the compassion your sister Eunice embodied as she pioneered the Special Olympic movement, as well as the work you put into the disabilities act. America is all the better because the Kennedy's had a vision, because the Kennedy's were passionate about public service, because the Kennedy's believed in equality, in quality of life, because they did ask what they can do for their country, and because they did dream big.

It's easy to focus on the flaws of those we insist live up to standards no one possibly could, and do it all under public scrutiny. But Senator Kennedy, despite his past, in spite of his alcoholism, was able to remind us all that we have an obligation to each other, to our families, to our communities, to our children, to our elders, to ourselves, to our country. He was larger than life, he was flawlessly human.

And now the Great Senator of Massachusetts is gone, just when we need him the most. We need someone in that Senate that could find common ground and work towards fair, good and necessary causes, like universal health care coverage, Senator Kennedy's great passion. We need another Kennedesque figure who would be able to be the voice of reason.

"The work goes on, the cause endures, the hope still lives and the dreams shall never die"

Perserverating on Popeye....

Gabe's new fixation is Popeye. Go figure, Popeye the sailor man absolutely fascinates him. He came across the Boomerang channel and discovered a whole new world, Hanna-Barbera/ Warner Bros style. Classics I grew up with, Bugs Bunny, Tom & Jerry,Yogi Bear, Huckleberry Hound, Snagglepuss (love him), The Flintstones, the Jetsons, now belong to Gabe...I walk into my living room and it's the 70's all over again...For some reason, in his mind, Popeye reigns, his pipe, his theme music, his need for spinach and the muscles it gives him...the way he laughs and talks, Wimpy and his hamburger obsession...2 o'clock comes and Gabe stops everything to watch "his favorite show"......

From the outside looking in, many may find themselves quite removed from our experiences. They may not be able to readily relate because the behaviors our children have sometimes are rather extreme. From the inside looking out, however, a whole new understanding takes place. We realize we have more in common than we think, don't let the neurological rewiring fool you.....

When Grease first came out I begged everyone I knew to take me to see that movie. I saw it 17 times that summer. I knew all the songs, all the dance steps, and even though they were 34 year olds playing high school kids I was completely sold....I had chills, they were multiplying...when I wasn't seeing the movie, I was listening to the soundtrack. Had Gabe done that, we would have said he was perserverating. I saw St. Elmo's Fire another 17 times, granted, I had a mad crush on Rob Lowe, but I knew it inside out and outside in....perserverating? Hormones? Combo of both? Same could be said about my musicals...West Side Story? Gigi? An American in Paris? Fame? Flashdance....What a feeling!! Perserverating to the 10th potential....

How many of us have been fixated with a tv show, a song, a group, a band, a sports team, an ex boy friend, ex girlfriend, an ex anything, an actor, a specific moment in time, an event, a trauma, a dream..etc, etc, etc ..How many of us could be easily redirected from whatever engrossed us? We are an obsessive culture. Somewhere along the line we have become so engaged that we have become an abstraction, completely disconnected in so many ways... Our collective fascination with our celebrities, status, sports, entertainment, escapism makes me wonder, just what distinguishes art versus life, versus voyeurism, and where do we draw the lines?

The topics that our children lose themselves in are not much different, their shows, dinosaurs, music, sports, videos, computer games, search engines, youtube, etc..the only difference is that at times it becomes all they can talk about, if they can talk, or all they want to connect with. It's far more difficult for our kids to redirect, and embrace other topics of conversations. It is precisely at these moments that I wish there was a greater sense of affinity with our kids, where those that look on believing they can't relate, reflect on a time when everything they thought they were, or wanted to be, or was delighted by, was reduced to this one thing, and they were completely consumed.

Lately when I take Gabe out he asks everyone their name (he's very friendly) and when they ask what his is, he sings "Gabriel the sailor man" gives 2 toot toot's and flexes his muscles, says he eats apples they make him strong...He winks and he continues to talk about Wimpy and hamburgers and Popeye....I suppose it could be worse, it's Popeye, not South Park....which would probably make for very interesting reactions, but I have enough explaining to do, thank you very much.....

Still I remember a time back when I was in high school, and my dear soul sista friend would sign her name Mrs. Michael Jackson, no song, no toot toot, but there was a definite wink, spin, moonwalk and toe stand....hee hee....shamon.....

Stars, Moon, Prayers........

There is a stillness tonight that is quite unsettling. Prayers, set free into the night sky, hang like stars clear in it's intent....waiting to be answered. I am humbled by how fragile life really is.

Just this afternoon I dropped my son Carlos off at one of his best friends house. It was his friend's birthday, they had the afternoon filled with activities.....but after a quick phone call to come pick up my son before schedule, I knew something was array.

What seems fair, what doesn't, what seems so wrong or so right, or so real, or such a game means nothing next to who is left behind, or how a life is lived. While we all make sure that our loved ones are safe, we lose sight, sometimes because of life's constraints, or time's restraints, that what is most important is our connection to one another.

I think back to my wish list for summer, all the quality time I was going to spend with my kids, all the places I would take them, the things we would do, and what was actually done shames me. Somewhere in my efforts to find my way out of a maze, I dug myself into a hole. Yet, it was the time spent doing the simplest things that mattered most. That late night board game, that jump in the pool, that walk to the beach, that weekly television show we all cuddled up to see......
The things I have said, the things I wish I hadn't, the thoughts I never found the emotional courage to release, or the ones that wouldn't make it past my pride: easing the guilt with secret promises of I'll do better, I'll try harder, I'll be more patient, more forgiving, more, more more......Finding myself at a moment like this, were the worth of my promises to myself are no different than the promises of a child who really wants something.......Now what was it that I wanted?.......permission to go on with a clearer conscious because I refused to accept my own limitations?

My friend was rushed to the hospital tonight, her family by her side. This afternoon when I dropped Carlos off we chatted and I walked away lighter, chuckling, which is how she usually sends me on my way. While we wait for word on how she is doing, I think of the wonderful relationship she has with her kids, and how her son, who wears her smile, adores her. My son is worried for her, and for his friend. It's the first time I have ever seen him tear up while asking me if she will be all right. It's the waiting that forces you to reflect. It's in the waiting that reasons are stripped apart and reconsidered, that actions and reactions lose their intensity, that second chances are negotiated, that perspectives are shifted.

And so in the waiting, in the stillness of this most unsettling night, I release my prayers for my friend and her family, and watch as it takes its place amongst the stars and the moon.......

I am humbled by the frailty of life............




'

Carlos

His long lazy curls swerve and rise like undulating playful waves racing to the shore. From the distance I can see the sun dancing on the surface of his silhouette, making little distinction between ocean and boy.
This child of mine is summer.

He bounces from moment to moment with ardent expectations only an almost 9 year old can have...chasing fireflies one minute, his older brothers the next, always on the hunt for fun. His presence lights up a room. His eyes quick to welcome you in on the joke..or the secret. His spirit always willing to embrace.

When he was a toddler, every Thursday there was a mothers support group at Gabe's Special Ed pre school, Just Kids. We were still in midst of the whirlwind of digesting the Autism/ADHD diagnosis. I was at the point of trying to wrap my head around what was actually happening to my child and what that meant to my family, while I was struggling to keep my heart together. On the ride home, from the back of the minivan, I would be serenaded by Carlos, not kid songs mind you, but whatever current pop song he had memorized....His first was "Since you've been gone" by Kelly Clarkson, sung with a smile and a uplifting beat....the way only he can do things,and every time he sang "ya, ya" with his facial expressions keeping pace with his head nods, I would be transformed, he was just so funny.....and so sweet....

I'm fortunate to have 3 boys. Here I am trying to teach them how to be independent free thinkers, kind, strong, compassionate individuals and the reality is that in the process it is these 3 boys who have taught me how to let my guard down, how to reach out, how to take chances, and most importantly how to trust my instincts and begin to forgive myself for my unforgiving list of imperfections......

Carlos is joy, he is warm, funny, mischievous, open, silly, full of life, full of wonder, willing to believe in just about everything and everyone. He loves with the same innocent endless enthusiasm as Christmas morning....and he runs with the same burst of energy as a summers rain.

I hear him laughing in the background, without a doubt his nose is scrunched up and his head is thrown back......all is light, all is bright, all is open....This child of mine is summer.

Half empty, half full, half assed......

In grade school we were given the proverbial half empty, half full question. I'll never forget it, it's one of those moments when you can't help but sing in your head, "one of these things is not like the others, one of these things just doesn't belong"...then not only do you realize it's you, but everyone else does as well....

I went to a catholic parochial school, which automatically scars you for life, at least it did me...stigmata...

Anyway, I was in 4th grade and Mrs. Perrone held up a cup and said "imagine this cup was filled half way, would you say it was half empty or half full?"...Everyone was giving their answers and when she got to me I was stumped. I could tell she was starting to lose her patience when she snapped at me, "listen, how hard could this be you have 2 choices"..... so I blurt out, " but how am I supposed to answer that if I don't know what's in the cup, and if I don't know how thirsty I am? What if there is something I hate? I'd have to be real thirsty to think that half full, and if it were something I loved, it wouldn't be enough...and what if I wasn't thirsty at all? What if it was just right, the perfect amount?..." and before I could keep going on with the rant, she pulled me out of the room to yell at me for giving, in her words, a very stupid answer...she told me to focus and stop over thinking everything, that there were only 2 answers, and I would have to write a paper giving one of the 2 and have it to her by the next day......

The reason why I bring this up today is because I was flipping channels and there was a discussion about how an optimistic attitude verses a pessimistic one from both the patient and the caretaker can make a difference in the health of someone battling a chronic condition or a terminal one. That a positive outlook was important for quality of life. And while I can see that; as a realist I have to question, is it a mom looking at the life of her child with special needs, and the very real obstacles in the child's way from their basic rights as a human being to their basic rights as citizens? Or is it a daughter or son of an Alzheimers patient, or a spouse of someone with ALS? Or anyone watching a loved one deteriorate and suffer....Because the support you receive from the environment you have to live in, school districts, doctors, specialists, insurance companies, research, friends and extended family, community, that all matters, that all makes a difference. Not all diseases and disorders were created equally, or have equal support systems in place, or have the answers necessary to make a difference to real quality of life.... Would they see that proverbial cup as being half empty or half full, or would they at that point just focus on what's inside that cup and learn to savor it and make it last as long as possible? Or in my case, hand it over to my son with about 25 different vitamins and supplements and hope that it helps him.

I believe hope carries more weight when there is thought behind it, and even more so when there is a strong communal sustenance. Even the optimist needs the right support to be able to continue to feed it's positive addiction, I mean attitude. It's never as easy as a cup half empty or half full...and if life outside of the 4th grade taught me anything Mrs. Perrone, it's that there is rarely ever only 2 answers, if you really think about it, even the optimists and the pessimists know that........and if you knock a kid over enough, she/he won't be half empty or half full, just totally screwed up.....

Now, I'll tell you what a cup filled half way means...you have to finish pouring... toast to your health, to the health of your loved ones, and hope we find a way to give coverage to all......
A votre sante

PETA how Petty.......

I have a hard time understanding how groups that claim to focus on awareness and the humane treatment of animals (which I am all for) can so often irresponsibly, recklessly, maliciously, and brazenly degrade, dehumanized and objectify women. But then I have a hard time being able to respect anyones opinion when it comes at the expense of an innocent bystander.

PETA, the infamous animal rights group, decided it was a delicious idea to put up a billboard in Jacksonville Florida with the caption "Save the Whales, lose the blubber, go vegetarian" and right along side of it was the image of the back of an obese woman, in a red polka doted bikini. They further justified their actions by suggesting that they were reminding residents struggling to lose weight that going vegetarian was an effective way to shed those extra pounds and keep them looking good in a bikini. The Vice President of PETA, Tracy Reiman then topped off this sundae of a statement with this quintessential cherry.."trying to hide your thunder thighs and balloon belly is no day at the beach".........

..
I am a big defender of animal rights. I believe that they should be treated humanely. I cringe when I hear hunting called a sport, and I seriously think that using population control as a means to justify the cruelty that takes place is obscene. There has to be better ways of dealing with these issues. We keep taking over their space and then retaliate with bullets when they wander into ours...go figure....Fur coats? Again, cringe..it's cruel...Beauty product testing? Not...Now when it comes to medicine and finding cures, I hesitate...I think of my children, my loved ones and I have an issue with black and white answers here....

But hey, aren't we part of the animal kingdom as well? Then why is it that it's fair game and open season on women? Whether society thinks they are overweight, or too old, or too opinionated...or too pretty to hold a discussion or too plain to be worth anything.....When did PETA think it ok to objectify women to sell a movement..having thin models and actresses highlighted in the "I'd rather go naked than wear fur" but then try to demean them when it comes down to starting another one? Becoming vegetarian to lose weight? Are you kidding? Look good in a bikini, get naked, wear lettuce bras? When did they think it ok to manipulate who we are at our very essence; thoughtful, creative, intelligent, strong, maternal, understanding, beautiful human beings, and turn us into the next publicity stunt? Do they think us that worthless? If these campaigns were made to spark thought and conversation, exactly what were they expecting us to think, never mind say? Perhaps they think we can't, because it appears we have gone along with it for so long and struggled to fit into a stereotype that just isn't realistic for everyone, like 99% of us.....That after all is said and done, it is always ok to use women as they see fit and then discard until the next incensing ad campaign? Just how is awareness given any real justice when the needs of animals are being deliberately put aside to continuously promote the exploitation of women. Not too long ago television broadcasting networks were firing seasoned talented anchorwomen and replacing them with what they considered younger, prettier versions to up the ratings. Not to long ago, a rape victim was accused of enticing her attacker by questioning what she wore. Not to long ago, women past the age of 40 were considered over the hill. Young women now, ignorantly say they are not feminists with great pride. We need to bring the movement back front and center and start the conversation back up again. We come in all sizes, all forms, all ages, all nationalities, ethnic and religious backgrounds, and it's all beautiful. And their is a place for all of it, and there is absolutely no need to objectify it, there is an absolute need to embrace it.

For the record, there is a real problem off the coast of Japan with the slaughtering of whales, and of dolphins, but I guess that didn't offend PETA enough as a voluptuous woman enjoying herself on the beach.

Here's the irony...One of the very reasons why I became a vegetarian over 25 years ago, was because I personally couldn't stomach eating anything with a face or brain. If it could have eye contact or feelings, I couldn't enjoy it. I accept the whole food chain, but I couldn't get past it. I can honestly say that I have gained a tremendous amount of weight, because guess what? Pasta, bread, cheese, sauces, cake, ice cream, chocolate, pizza, cookies, potato chips, wine, cocktails...all of these things don't have eyes or a thought....So, a vegetarian diet isn't going to make you thinner, but eating right, eating smaller portions, whether you are a meat eater or not, will help you out as long as you exercise as well...which by the way I haven't done...So in the meantime, I prefer the term Rubenseque, voluptuous, curvy, well rounded, or healthy....I am woman hear me roar......Who am I kidding, I spend the whole day yelling at the kids, but still.......

So excuse me while I wiggle my way off the soap box, PETA just may harpoon me............

Nena

Her favorite flowers were daisies, or "margaritas" as she would call them. Orange and yellow were the colors she was most drawn too. She would sip her Cuban coffee from an old dented tiny tin coffee mug all day long. Born in Orense, a tiny town in Galicia, Spain, she claimed Cuba her home. Her kitchen was legendary amongst her friends and family. Her character legendary within the circles she traveled. She was larger than life though she never made it to 5 ft. Had she predated Napoleon, he would have carried her complex, instead of the other way around. Her cocktail of choice was Pernod with orange juice, after a trip to Paris. She chased culture the way teenage boys chase girls, unabashed, unapologetic and at times a bit intimidated. She never allowed my brother or I to call her Grandma or "abuela" because she refused to grow old, and that was a title that made her feel old.

My grandmother would have been 94 years old today. Somewhere between her late seventies and very early eighties she must have developed the Alzheimer's that would eventually claim her life. I was born into a world where Alzheimer's existed alongside lullabies and fairy tales. My grandmother nursed her mother, who had quickly fallen into this affliction and so she was well aware of the steps leading to and the progression of Alzheimer's. When she secretly suspected she had it she began to give generalized answers, and skillfully distract us so that we wouldn't detect discrepancies in her behavior. She was fiercely bright and independent. My grandfather would play along and protect her. He always did. Unfortunately there is no alluding Alzheimer's, trickery soon falls short.

The irony was that 2 weeks after Gabe was diagnosed with Autism, both my grandparents were diagnosed with Alzheimer's, each on a different place on the spectrum. My grandfather was still mild, my grandmother, as always, far ahead of him.

I know I am not a scientist, or doctor, but there is no doubt in my mind, gut, heart, hell, every bit of my body, that our environment, our lifestyle effects our health perhaps even in a more pervasive way than out genetic predisposition to things....Our environment changes our genetics, our makeup. It's evolution. There is no alluding nature. If you mess with it, ultimately it will mess with you. We have seen auto immune disorders and diseases soar. We are in the middle of a global Autism epidemic. In this debate of health care, there should be a focus on lifestyle and the toxins thrown into the environment. Everything is so intertwined that if we are to fix one problem we need to open the discussion on contributing factors. The truth is, like a Russian doll, we are living organisms within living organisms, within living organisms, and our survival is dependent upon a balanced ecosystem. Despite being high on the food chain, the totem pole of life, ultimately we are all on equal ground, without one the others stop existing.

My grandmother lost her life after the ravages of Alzheimer's took it's toll. As she left , Hurricane Katrina hit hard and waged such a furious battle, 4 years later we are still recovering. This is what happens when the government doesn't respond as quickly and efficiently as it should, or when life and what could harm it, is overlooked. There's a pattern here.

It is easy for anyone that has never lost a loved one to Alzheimer's to dismiss it as an old persons issue, to forget that there is a vibrant, exceptional spirit trapped in a disintegrating brain. To this day I find notes stuffed in her old cookbooks describing the angst she felt knowing her fate. She knew there would be a moment in time that she wouldn't recognize us, her friends, her life...that she wouldn't be able to share and interact, that she would be left alone, behind and she also knew well the heartache that it would cause us all. Alzheimer's is cruel , unforgiving and devastating.
For years her parting words would always be "don't forget me, tell your kids about me, and how I loved them, and how they made me happy".....and on her death bed, after 3 years of not knowing who I was, she remembered, and desperately tried to tell me something, but the words failed her. I suspect she would have told me to make sure I take care of my mom, but more than that, to remember her as she was, vibrant, colorful, loving, intelligent, sharp, youthful, bossy, opinionated, religious, faithful, loyal, endearing.....

Her favorite time of the day was the sunset, when orange and yellow played in the sky...........
How I miss my Nena..........

What would Jesus do?

Hard not to believe in anything on such a brilliant summers day. My sons race across the yard and fling their bodies into the pool disappearing into water, the raising bursts of the waves hinting where they've fallen...You can hear them laughing, yelling, daring each other to do different tricks....And for a few minutes of what seems like suspended time, normalcy, by the conventional definition I was raised with, accompanies me. Jesus, Gabe is just like the rest of them, laughing, twirling in the water, floating on tubes and swimming confidently.....I hear him shout "look at me" "watch this guys", and I am in heaven...I still secretly count the number of words used in each sentence.
Conventional normalcy gets up and walks away and my reality jumps in to rock my moment.....Gabe had run out of the pool and found a wondering box tortoise (we get them every summer), shakes it like a maraca and puts it down his swim trunks, then grabs a hose, turns it on and sticks that down his swim trunks too, throw in a few appetizers and cocktails and there's a party going on in Gabe's pants.....Well, what is a party for one, is water boarding for another...and apparently, this is what Will thought was going on and quickly rescued the tortoise...You think they are slow? This one was out of my yard in a New York minute...
Never seen a tortoise move so quickly. I suppose if you want to win a marathon, instead of training for months, spend the few minutes with Gabe, his swim trunks of wonders and a hose and you'll beat everyone to the finish line....
It wasn't long after that the excitement got the best of him. He began to vocally stim and flap, skipping towards the trampoline, then jumping his way back to self regulation...With every bounce calming clarity. Quietly I go through my list of things I still want to do with him, what vitamin might help what, what exercise may reduce the need to flap so continuously... What new treatment can get him to the next level....How to get him ready for the school year...For years I've tried to out think Autism, and I have beat myself up for feeling like it's just not enough, I'm not enough...The voices in my head, judge, jury, prosecutor and defense making cases as to why I fail, what fails us, and then there is that little voice that raises above it all, and reminds me that there was a time when play was only parallel, when the words were trapped in his mind, when he could not stand to keep his clothes on or sustain any eye contact, or make any connection much less invite anyone to watch him do underwater somersaults or stand on his hands.....As much as it deeply hurts me to see the growing divide between what a normal 4th grader is like and the immaturity that Gabe thoroughly embraces and relishes in, I know that this too requires incredible maturity on my part to find those connections between him and his peers: and teach him to how to do that too, just like we taught him how to calm himself down on his trampoline, take deep breaths and move on......
I have an acquaintance who has a child on the spectrum, and she handles just about everything Autism and non Autism by one simple question...."what would Jesus do?"......I asked her how that was working for her, she mentioned that she found she had more tolerance, compassion and kindness for her son and her struggles, and that it gave her great calm and peace to know she had the Lord by her side. Happily, it works beautifully for her...Here's the thing....when I think of what would Jesus do, it's so simple, water gets turned into wine, lemonade into limoncello, raise a few from the dead, or at least a stupor or 2, feed the hungry, cure everyone, bring peace, enlighten the masses and have a great party... except maybe not in Gabe's swim trunks...When Jesus asked us to think for ourselves, question authority, be kind, be compassionate, help others out, respect...it got him crucified.....What would Jesus do? I am asked...real question is, What would I do? What can I do? What should I be doing to help Gabe and kids like him live the best life possible. I'm not religious person. 12 years of catholic school and still I struggle with everything....
But it's hard not to believe in anything on a brilliant summers day....So I choose to believe in life, in family, in energy, in friendship, in love, in art, in the sunrise and the sunset and all that falls in between.......Gabe sits next to me blowing bubbles into the sky, like prayers released, I hope for enlightment.............

Married with Children

A month shy of 16 years ago I married this man. Carlos and I had dated for 2 years and had you asked me then, at 26, if I was ready for marriage, I would have smugly said of course. I would have defensively debated you on how the 2 years courtship was a metaphorical resume that would not only sum up my qualifications for the job as wife, but would have also guaranteed our success. Two snaps, a circle and a neck roll later I would have strutted my way down the carpeted aisle of petals and ribbons, opening the doors to a reality I thought I would be familiar with, only because I have rehearsed the scenario so often in my delusional mind. Needless to say, what we imagine something to be, and the reality of what it is, can be quite sobering......especially if you watch way too much tv like I did.....I wanted the Cosby Show, Family Ties, but it's really more like Married With Children and Roseann people.......
When I think back to where we started from and what we have had to face, when I think of all the tantrums, all the tears, all the unexpected surprises, good and bad, all the loss and all the gifts, the insecurities, the hurt, the passion and compassion, the laughter,the growth, the sacrifices and the rewards, the birth of our children, the change in our lives...and the love it took to sustain it all, I am awed....When I think back to the day I came home heavy with the uncertainty of a devastating Autism diagnoses sitting on my heart, and the way he still believed in our son and in subsequently believed in and supported my efforts to push Gabe ahead....or the way he stood by my side and comforted me as I watched helplessly as both my grandparents slid into Alzheimers.....I am profoundly grateful.....
Marriage has been so much harder than I would have thought it should ever be, so much messier, so much more vulnerable, complex, layered, and ridiculously bare. Here I was at one time thinking that it would be fun, an adventure intermixed with fixing an apartment and planning a life, but as with anything real and purposeful, planning a life evolved into making the most out of life.
Not that I'm much more prepared now than I was 16 years ago to walk down that aisle......
The only difference now is that I've learned to accept my inner Roseann, Carlos's inner Al Bundy...and the delusions of grandeur are as far behind me as the size 4 dress I wore on that day...
Still after a month shy of 16 years, I love him......

When you lay down with dogs.........

My home is dominated by testosterone. Just about everything in it is male except me of course, and 2 of my 3 dogs. I have a 14 year old senile long haired chihuahua named Lexi and a one year old Great Dane, Clementine. One of us woke up today with her period. This is my luck, so take a big guess who......
Now, this is the second time she has gotten "her little friend" and I tell you, there is not much difference between Clementine and her female teenage human counterpart. Clem breaks out, she gets moody, needy and sentimental. She wants to eat, she wants to cuddle, she wants to be left alone, she barks more than usual, her nipples swell, she's bloated, sore, and I'm pretty sure she's flipped me the bird a few times over.........If she could slam a door I'm betting she would!! Thank God she has no opposable thumbs!!!!!
Before this problem got messier, I figured I take a ride to the pet store to find a solution.....The shop keeper tells me that the best thing to do is to put my sons underwear on her with an Always pad inside (with wings) because quite frankly the pads she sells would never fit her.....
Uneasy, I came home, looked through the drawers, found a suitable pair and strapped on a pad with wings.....I was good to go, I was thinking positive, had a few treats to try to distract her, tried to keep calm cool and collected....She gave me kisses, tricked me into believing I had a chance...Then I made my move, and she made hers....I put her foot into the underwear, she took it out, I put it in, then she shook me all about....we did the hokey poky and she turned me upside down...I ended up with a pad strapped onto my forehead and my positive attitude, like a thong, shoved deep in various crevices.....This meant war.....We made eye contact, she licked my nose. I didn't fall for it this time. We wrestled, we grappled, kids were trying to help hold her down, kids were being tossed everywhere like rag dolls...I mean "action figures"...(they are boys)....finally victory was mine....the underwear was on, backwards, but that's ok, and she sat exhausted, grumbling and thirsty.....and it lasted all of 5 minutes before she ripped off the underwear and ate the pad.....
And just like that I became Clementine's Bitch.....until it's my turn.........

I have Issues

Last Monday I picked up the September issue of O magazine. In the back there was an article written by Cintra Wilson titled "An Inconvenient Youth". The article highlighted a group of friends who talk openly about their experiences. For the most part I thought the piece was honest, fair and thoughtful. I felt more connected because happily I found that Dr. Robert Naseef and Cindy Ariel were also included. Years ago, an essay I wrote was included in their book "Voices From The Spectrum" and it was wonderful to see their work recognized in the most natural a setting, amongst a group of friends. But I did have a bit of an issue with a few things written and here is the reason why.......
We are a special needs family. For the past 7 years Autism set up shop in my home, claiming my son Gabe. It has been a tug of war trying to get back the "typically developing" son we lost after vaccinations...yes I said it...vaccinations...... For every step forward, we have taken 2 steps back...The Autism Cha Cha Cha.....After 5 different neurologists, 1 being the head Pediatric Neurologist at Stony Brook Hospital at the time, told me to place my son on a waiting list for an institution and in the meantime while I wait, medicate him, I decided to take my search for help and answers elsewhere.
My son was put in a special ed classroom in a 6-1-1- setting. Through the years he had ABA (applied Behavioral analysis), VB (Verbal Behavior) tons of OT, listening programs, Floortime (DIR) RDI (Relationship Development Intervention). When he was placed in the 8-1-1 Autism program in our public school, I began the biomedical approach. Now, I am the quintessential neurotic New Yorker who must research everything before I go into it, so trust me when I say the decision was a well thought out one. It was also the one where I began to see glimpses of the child I once had. The Biomedical route is one that has a specific protocol attached to it. The treatments are given by DAN (Defeat Autism Now) Doctors who are familiar with the medical symptons our children face. They are not snake oil salespeople selling fluff and stuff. I had my son thoroughly evaluated, hair, blood, urine and feces sent to labs, and the results came back that he had high levels of heavy metal toxins in his systems, the highest being mercury. He also was allergic to and had many food sensitivities. We changed his diet, added vitamins and supplements that he was deficient in, we had him chelated, and he went from being almost nonverbal (had very few words and would not say more than 2 at a time) to being able to focus, sit still for an hour at a time, say 10 word sentences and have normal bowel movements for the first time in years. The following year he was able to be placed in an inclusion kindergarten class.We then proceeded to try the Brain Balance program and it was wonderful therapy. Granted, it's all ridiculously expensive to the point of being obscene, and it shouldn't be the case. It should be more affordable and accessible. We have refinanced our home in order to pay for many of these treatments, but it was a chance we were willing to take.
Here is the issue I have, no matter where your child falls on the spectrum, we should be in this together. If I learned anything at the start of this journey is question everything, always follow the money, check ingredients to everything from the food we put on the table to the vaccines we inject into our bodies to the products we clean and paint our homes with. We need to nurture what nourishes us. We need to be vigilant about laws put in place that could hurt or undermine our kids. We need to be respectful of one another and our experiences. While I understand the frustrations many parents of older children who have tried so many different approaches have with Jenny McCarthy and Generation Rescue, it is unfair to be so dismissive of the work they do. My son was diagnosed a few years before hers and I was on TACA NOW & Generation Rescue and Autism Research Institute, Safe Minds, NAA before she ever came onto the scene. It was important for so many of us then, and now. To also state that vaccines have nothing to do with Autism is incorrect. They have not been able to rule it out in independent studies. Again it is always important to see who funds the studies.
Our children are here now and there has to be a focus on how we can help them achieve their potential, that should also be on the forefront. A fair shot at life for so many who can soar given the opportunity should be our priority.
Acceptance is always the first step towards healing, whatever you chose that word to mean for you. It's the first step towards an honest discussion, it's the first step towards finding solutions. Acceptance stems beyond our community, beyond our situation. Acceptance does not mean conformity, it means recognition, acknowledgment...isn't that what we all want for our children?
I have come to accept my son's Autism, but I also know that just because he has a disorder, doesn't make him one. My monumental task as a mother is to make sure that Gabe is not defined by his Autism, but by the undeniable traits that make him the exceptional, funny, bright,
loving, persistent, courageous boy that he is. He has come such a long way, but still has many, many hurdles ahead of him....
The new stats are in, 1 in 100 are now diagnosed with Autism. It's a new day people, lets learn to accept, respect and demand better for our children, for our world, for our earth.........

To begin the begin

And where to begin....
I'm having a problem trying to figure out what to put under the "about me" portion of this blog.
What should come so easily seems to always escape me. My husband says I over think things, but that falls foreign to my innate need to see things from all sides and angles. I suspect the underlying issue is that aside from being a mother of 3 boys, a wife for close to 16 years, a daughter, sister, friend, relative, animal lover, art lover, artist, tree hugging, save the planet thumping, everyone must have equal rights, live and let live liberal, somehow I have lost a sense of where I begin and end. "About me" has been scattered in little bits and pieces along the way, changing my composition, and in turn, my understanding of what I thought to be true.
"About me" has willingly been about everyone else and everything else. If I can feed it, it comes home with me, figuratively and literally.
I do believe that the whole is as important as the sum of all it's parts. But I also am now starting to realize how important it is to have a grasp on what exactly your part is. This is where I fall short, I can come up with a list of titles and descriptions, yet fail miserably at creating a cohesive and mindful self portrait. You know it's bad when you have to ask others who they think you are. When I am screaming "do you know who I am?"it's not rhetorical, I'm really asking do you know who I am...! Word of advice, if you need to ask, be careful who you question....
So, now I begin again, at 42, trying to get past the words and the colors, past the beats and the
choreography, past the cycles and the structures and limitations and fears and confusions instead of getting lost in them....I need an inner GPS & a mojito....or 5.......

Another cherry popped

I'm a virgin blogger. This being my first time out, I ask you to be gentle, very gentle. I've entertained thoughts about blogging for about a year now, but never quite got around to it. The excuses seemed to outweigh the reasons; too busy, too tired, too overwhelmed, too dehydrated, too everything, but the real reason was too intimidated....the thought of putting my ideas out there without being able to get a visual or verbal response scared me.
So here I am, no candlelight, no wine (surprisingly) , no protection, no false promises of being loved forever and that I would be respected in the morning, and still I am willing to try.
Just like a virgin.....touched for the very first time.....