Missing Lexi

 I think I'm strong enough to blog about Lexi now, so here goes......


It's been  2 weeks since I paced my kitchen's unforgiving cold tile, with my little girl cradled in a blanket by my breast. My heart beat kept rhythm with hers. My intellect plead with God to take her peacefully, I knew she was dying and by 2 am, she was in pain, I knew it was time..but my heart, my heart secretly wanted that miracle...I've always had a problem with goodbyes.

Lexi came to me during the first year of my marriage. She was my Christmas present. My husband came home, took his hand from inside of his coat, and there, in his palm was this tiny chocolate long haired Chihuahua, with a collar that hung more like a long strand of pearls. She was all ears, her shaking started at the end of her wagging tail and rippled to the tip of her bobbing ears...I fell in love with her instantly, and never stopped loving her.

Lexi labored with me, adored my children, loved everyone she came in contact with. She was funny, she was sweet, she was loving, she was beautiful, she was accepting, just pure unconditional love. I have cried into her countless times when I couldn't cry in front of anyone else.  She was by my side through the darkest moments, as I researched first Autism and ADHD and then Alzheimer's, and everything that went along with it. She was there countless nights when I couldn't sleep because my grandparents regressions haunted me. She was there the countless nights I couldn't sleep because the desperation for my son kept me maniacally looking for more answers, more information, more of anything that could help. As the years passed and milestones were met, her joyous energy never diminished until her final weeks, when her 18 years began to reveal itself..

 But I miss her terribly. My instincts are to instantly look towards her corner, to call for her, to hear for her. Having to become accustomed to the silence, to the empty space is challenging. I am comforted by the healthy happy years she has been able to live out with us, I am comforted by the absolute love I have for her, and for having been able to be there for her when she needed me the most.

Any animal lover could tell you that animals have super powers. In loving you they thaw your reservations and coax your psyche. The primal connection is therapeutic, medicinal, they are the ultimate healers.. They watch over you. They do not judge you....well, maybe they do...But whatever the case may be, Lexi had super powers...According the Gabe her super powers may have been incontinence in her last years....but,
in my mind, her super power was her happy go lucky state of being, her oblivious state to anything that could bring her down, and her undeniable fighters spirit as she tried to hold onto life til the very end.  I have learned  many lessons from her. I am grateful to my husband and to the forces that put Lexi in his path.. From the palm of his hand, to cradled against my breast 18 years later, she has been such an extraordinary gift.

I love her

I miss her....

Thank you Lexi.....

RIP......

What You Need to Know About My Son

What you need to know about my son......

Every school year begins with an email I send out to my son's teachers. It's an introduction of who he is as a complete individual, and a guide to help them with any behaviors that may pop up between the "wow, new teacher, lets see what I can get away with" and the hovering environmental, sensory and biological triggers that seem to constantly encircle him like a captive prey. I reassure his teachers that I will be vigilant, that I will help him in any way I can, that I welcome any advice they may have, and that they have my full support. I proof read the email at least twenty times, trying desperately to remove any scent of momma bear, stripping it of any excessive sentimentality. I remind myself of my advocate friend's words, my school season mantra, "stay professional, stay focused, keep it clear. He has a right to his education. A teacher is not doing you a favor by educating your child, they are simply doing their job". Still, lurking between what is left typed and what is deleted, is the subliminally implied "please see my son as a child first". I hold my breath and press send. A week later I hold my breath and send my son off to face a new year with new challenges.

As I write this, I am a week away from our CSE meeting, where his 7th grade year will be discussed. However, this year, for the first time ever, I have felt tremendously disconnected from his teachers as a whole. For the first time since his initial evaluation and diagnosis,  I do not know what to expect. It's a new chapter in his life. As he ages, it becomes more complex. I think about his sensory issues and how he had to learn to decipher what he needed to "hear" from background noises. It was all white noise to him. It all came in at once with equal importance, loudly and overwhelmingly. When I think of Gabe aging with a disorder that to the rest of the world seems to envelope him completely, like a snow suit, white noise takes over. I have to relearn how to focus on what I need to, pushing everything else to the background. In an attempt to begin the process, I begin here, with these few simple words....what you need to know about my son.......

What you need to know about my child.....

Gabe is a hard worker. He is persistent. He cares. He wants to do well. He takes pride in his work.  He perseverates over things that are important to him, such as earning his rewards, pleasing others, getting goods grades. He perseverates no more than some people perseverate over Gabe's disabilities. He perseverates no more than most of us have about past loves, school choices, career choices, job issues, social status, our weight, our looks, our clothes, our homes, our cars, our cell phones and computers, who wronged us..etc, etc...
Just because he has a learning disability, or because he has reading comprehension issues doesn't mean he can't learn how to, it means he learns differently. It also doesn't mean he can't comprehend difficult concepts, it only means it has to be broken down and presented to him in another way. You need to know that with the proper tools and instruction, Gabe can learn, and can contribute. All he needs is for a teacher to believe in him. All he needs is for a community to learn to believe in him...to see his abilities, before his disabilities, and see him as a person first.

What you need to know about my child is

Gabe is far deeper than many people, including past educators, give him credit for. I remember a CSE meeting years ago where I was told children like mine could never understand the concept of God or religion because it was abstract. Funny, having studied history and watching it repeat itself, I do not believe any one of us "neuro typical" types have ever really mastered the concept either. It remains an abstraction to us all, and like a good piece of abstract art, it's left up to interpretation. Gabe thinks about death, worries about it, dare I say, perseverates on it. He asks about God, the technicalities of soul instincts and placement, what heaven is like, what hell is like..for him, religion is the biggest behavior modification plan of all times. He worries about the "nothingness". He asked if he would still have Autism in heaven, and would he still have his food allergies. He wants more than anything to be immortal. Far cry from the limits set on him during that CSE meeting. Gabe also understands when people are talking down to him, when his peers do not include him, when people call him names. He understand when the "r" word is directed to him, and the demoralizing nature of it. I tell him different does not mean less than, but the truth is that in our society, when different has a label dealing with brain issues, it does mean less than. That's why the only ones outraged by Michael Savages anti Autism comments are parents of and people who love someone on the spectrum. But you do not see the same calls of outrage and resignation coming from our society in general, like it happens when an Anti Gay, Anti African American, Anti woman, Anti Semitic slur is made public. We do not unite behind and rally for people with disabilities like we do for others who have been victimized. Gabe understands that he is not viewed the same. Just because someone doesn't express their thoughts in the fashion that we are accustomed to understanding doesn't mean they are not capable of having deep thoughts. By the way, there are many spiritual people on the spectrum who write beautifully on the topic. Spirituality, I am sure, would dictate, that Gabe would be a spiritual being having a human experience, but in this human experience, I would appreciate it if he would be seen as a "person first"...

What I need you to know about my child is....

Gabe has dreams and goals. He wants to go to college. He wants to be a chef. He wants to have a family. He wants to be able to drive a car, go to parties, and travel to interesting places. He has serious sensory issues that he contends with, but he has his visions. I have been told over and over through the years that the work will get harder, he won't be able to keep up. I can't help but think, won't be able to keep up or you won't try to teach him? Life gets harder, and life with a disability, let alone a stigma is even harder. If anyone needs to be armed with the tools to deal with the work and challenges as they come it's people like Gabe.
I learned many lessons in loving Gabe, but one of the greatest is that the state of mind is far more important than the state of a mind. You need to know that we all live on spectrum's. That the hair twirling, pencil biting, nail chewing, foot swinging we do to calm ourselves down are no different than the flapping, the rocking, the toe walking, the spinning someone with ASD might do to self regulate. Behaviors stem from biological, environmental, sensory, triggers, from frustrations, from hurt, remarkably just like our behaviors. You need to know that the standards we hold our children with ASD to is no where near what we hold ourselves or our other typical children to. We have become a disconnected nation, barely talking or looking at one another in the eye, texting while in the company of others, on seperate computers, and yet we force kids like Gabe to look us in the eye and have manners, and simultaneously disregarding our own. Social skills in general is becoming a dying craft...so Gabe could perseverate on the death of something else some more....We are a perplexing bunch, we demand respect yet insist we have a right to be disrespectful.
Consequences do not only exist in a behavior modifcation plan......

What you need to know about my child is

That he is now 1 in 88...that he could be your child, grandchild, nephew, niece, brother, sister...that he is loving, sweet, funny, bright, insightful, curious, brave, silly, anxious, complex, talented..a person first...he is like every child, and yet he is not...because we are all unique. He has a right to reach his potential. He has a right to be taught life skills within the community that he lives in without judgement. He is not a label, he is not a classification, he is not the sum of his disabilities. He also embodies his very real and strong abilities. He has a disorder, but it by no means signifies that he is one. His future, just like everyone else with Autism or any type of neurological or learning disability, hangs on how we handle things today. When we cut services, we cut their chances of reaching their goals, and having a purposeful life. When we constantly send the message that they won't amount to much anyway, it kills their spirits. When we overlook them, talk about them as though they weren't present, we make them feel more invisible than they already do. How much different is it really from what most of us have felt at some point in our lives?

1 in 88 will turn into 1 in 64, and then 1 in 40 and so on if we continue to dismiss our ecological responsibilites, and allow compromised individuals to continue to manipulate bills and laws....
And we will have a crisis on our hands in a few years when these children age out of the system if they continued to be neglected by the school districts, the federal government and the local govenment.

You need to know that my son, and every child, teen, young adult and adult like him are a "person first'.
There is nothing subliminal about that..



,

Say Cheese......

Channeling Sophia Petrillo, I begin.....

Picture it: Center Moriches, November 2002, in King Kullen's dairy aisle....grocery cart parked right by the eggs...a 3 year old Gabe, fully clothed (including jacket), is strapped into the cart seat. In the red plastic car attachment Will,5 and Carlos 2, sit patiently. I, lulled by the unexpected cooperation of my boys, am confident I have enough time to grab a few dozen eggs. Tempting fate, I walk towards the eggs. In the time it took to pick out an extra 2 dozen eggs, Gabe, still strapped in, was completely naked, Carlos had gotten out of the car and proceeded to pee in a cleaning bucket, and Will was wrestling the first dozen eggs I had put in the cart away from Gab'es grasp. For some reason that year, Gabe who lost every milestone and was just diagnosed with ASD/ADHD, decided he must sit on every egg he could...apparently he had hen tendencies as well, I'm sure that would be a whole other diagnosis.
There I stood, eggs on the floor, on Will, on Gabe, on my face, confused...flee...fight....cocktail....overwhelmed and ready to cry....but I made the conscious choice to laugh instead, and kept moving.....FAST.......

Picture it: Shirley Long Island, July 2004, Petland...After lots of research, reaching out, therapies and biomedical interventions, Gabe was slowly coming around. He was regaining language, and a gluten free/ casein fee/ egg free diet implemented after testing revealed severe food allergies, helped dramatically to subdue his hyper impulsive behaviors, his ability to focus, and his cognitive skills. We began to hope again. Will now 7, Carlos 4 and Gabe 5 ran into Petland to see the animals while I got some food for the dogs. Will kicks up his foot and his shoe flies off lodging itself between the top shelf and the wall. As the attendant and I dealt with our height challenges and our positioning, Gabe grabbed a dog biscuit and began to eat it as a ferret grabs hold of Carlos' finger. The rest is history...I lost my mind....absolutely frantic..."is this a gluten free/ casein free/ egg free biscuit? Can I see the ingredient list? Gluten, wheat, you know gluten??? AARRGGHH WHY!!! WHY!!!! As Gabe gets all dramatic shades of red and I could feel the heat rising to the curvature of the cartilage rounding his ears, I'm panicked. Will tries to pry the ferret off of Carlos' finger and the attendant, frazzled is left completely overwhelmed by yet another bit of my reality that is leaked into the unsuspecting world...He says to Carlos "why didn't you read the sign?" and Carlos cries "because I'm 4 and I can't read yet"....and it hit me hard....I looked around at the scene and started to laugh hard and loud, and it was contagious...again, the choice to laugh ruled, we bandaged Carlos up, left the shoe and ran off to the vitamin store to pick up some activated charcoal for Gabe's monumental infraction. I walked away releasing every last bit of shame and embarrassment I was holding onto, then I popped open the cork and toasted.

Picture it: Center Moriches, October 2011, last Friday to be exact....Gabe is slipping academically and behaviorally as well...All indications point to yeast. The incessant giggling, the perserverating
over looney tune songs, the newly found need to suck on his arm, the biting of his shirt. A long note from his aide confirmed my suspicions that it was hitting him harder than usual...can the onset of puberty be to blame?...Our world never completely flipped right side up again, but as it goes in my life (and because at times I am a slow learner..optimism gets in the way of lessons) his early academic successes this year lulled me into a false sense of confidence that all will be well. I tempted fate and it threw dog biscuits and eggs at me. The road is long, the road to yeast recovery is perpetually longer...and it truly is an isolating and dismissive experience. Just when I was about to surrender to tears, I get his school picture, and it's no longer a choice... laughter explodes....

I do not know what the future holds. I barely know what to make of the present. My definition of "all right", as though directed by Michael Bay, constantly transforms into something new and multifaceted as we go from obstacle to obstacle. Life is resoundingly and pervasively temporary.

Still, despite serious concerns, deep disappointments, and the inevitable questioning of faith, I catch myself making chapels out of stars.....looking for connections from a neural and cellular level to a societal one. Praying that in between the concrete and the abstract love and laughter will continue to accompany us....all the while trying to duct the eggs...and the biscuits....and whatever else is thrown our way......

You need perspective to find the humor in circumstance, you need grace to handle it with kindness and an open mind....But you need good wine, good food, good friends and family to be able to make it through sanely, and keep your spirits and faith up, when you can't see straight anymore.
Thank you my people for uncrossing my eyes.....now to uncross Gabe's........................

Painting Will

Right before my birthday in May, I developed a metaphorical existential lump in my throat of epic proportion. One would think that perhaps in turning 44 my age was getting to me...but it wasn't my age that left me struggling, it was everyone else's.

I could have and should have been blogging about all the transitions that we were facing this past June. Monumental milestones were met. My oldest graduated Middle School and will start High School in 2 weeks. My two young ones stepped up and into Middle School, leaving elementary days behind them. Our years of dealing with the very pervasively rippled impact of Gabe's Autism and ADHD on every aspect of life, has, in turn left me with a unique perspective. I muse over the reflection it has cast on stigmas, on how we define what is acceptable or not, the questioning, the redefining of independance, normalcy, worth, levels of functioning, what it truly means to be tolerant, how we communicate, and those opening and closing of circles...what it means to be forgiving, to be accountable, to be honest...especially to be honest. What it means to be respectful..the importance of kindness and being mindful. From a reflective perspective it becomes pressing just how essential nature is, and how any form of nature should never be dismissed or excused, only nutured. The infamous "being different does not equate to being lesser than" gently rolls and sometimes loudly crashes onto the shallow narrow shorelines we wade in. Real diversity is inclusive, even the out of the box thinkers, no matter how far out we may be, finds their place on the colors of life's mirrored spectrum.... On two consecutive nights I watched my three children, one with great swag, one with intense excitement, and one with deep introspect, walk across the same stage during 2 different ceremonies, celebrating transitions. My babies are a far cry from those Blues Clues and Sesame Street filled days, I just never imagined it would sting this profoundly.

A summer spent trying desperately to get my emotions and my thoughts in check was nothing less than futile. The sounds of a house in a full blown metamorphosis state can be a little overwhelming as well. The silences feel different, and the noises, the deeping voices, the topics of conversations, the thought processes that sneak up on you and surprise you as they reveal very distinct and opinionated, funny, bright, ridiculous, insightful young men.....but I am not ready to have them change this rapidly, I seem to digest things so much slower, and I want so badly to hold onto everyone just as they are, just a little longer...and I look to my parents who are aging as quickly as my boys....and who may not be as independent as they are now for much longer....and yet again, the concept of independence transitions on it's own....I am left to wonder, how someone like me, who is still riding on the delusional wave of 21, and finds herself consistantly run over by life cycles, can ever make peace with the passage of time and all it takes with it as it frivolously goes on.........

So in the hopes of holding onto a moment, I fall back on instincts, my most primal ones. I pull out my paintbrushes, I choose my palette, I prime my canvas, get my mediums ready, and I attempt to capture my world in transition, one subject at a time, one heart beat at a time.....

I begin by painting Will...........

The Rapture Cha Cha Cha

On a temperamental mid May Wednesday afternoon, a new version of the Cha Cha Cha was created at the Arthur Murray School of Dance in Center Moriches, NY. The week was wet, the clouds hung darker and grayer than usual. An occasional exhale of sunlight provided a moment of relief, before sudden downpours of torrential rains jumped off all things of substance as though they were trampolines. We watched from under a disco ball while waiting for our Cha Cha Cha lesson. The weather stood in the way of most of our classmates, but Gabe and I are dancing machines, and we weren't going to miss it.......The music starts.....The teacher (aka Arthur Murray, according to Gabe) takes his place. There are 6 of us there, he stands in the middle and counts the beats...right foot front....cha cha cha.....left foot back cha cha cha.....

Gabe and I stand face to face trying to figure out our left from our right...I count along, guiding him.....And it starts.....the birth of the new version of the Cha Cha Cha, The Rapture CHA CHA CHA....ready?

Assume position, back straight, shoulders back, arms extended...

One two, Cha Cha Cha

Gabe: Will the world end on Saturday? Cha cha cha

Me: No Gabe Cha Cha Cha

Gabe: But they say it will blow up Cha Cha Cha...

Me: nothing will happen Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha

Me: You are not going to die Cha Cha Cha

Gabe: I don't want anyone to die Cha Cha Cha

Me: No one is going to die Cha Cha Cha

Gabe: I don't want the world to end Cha Cha Cha

Me: you're killing my feet Cha Cha Cha...

Gabe: What if we blow up Cha Cha Cha

Me: We are not going to blow up Cha Cha Cha...Now travel Cha Cha CHa
Knock it off and focus Cha Cha Cha

Gabe: What can I earn Cha Cha Cha

Me: You can earn computer Cha Cha Cha.....

Gabe: Can I earn computer and not blowing up? Cha Cha Cha....

Me: Yes, you can earn both things Cha Cha Cha

Gabe: I'm hungry Cha Cha Cha

Me: Pay attention and travel Cha Cha Cha

Gabe: Can I earn computer, not blowing up and cocktail weinies if I do a good job with Mr. Arthur Murray Cha Cha Cha?

Me: Yes Gabe, now please focus on dance Cha Cha Cha.....
Now turn Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha
I want to live Cha Cha Cha
Turn the Disco Ball on Cha Cha Cha
This is a party Cha Cha Cha...........

He remained unfocused and anxious the rest of the class.....

We drove home......

Where another version of the Cha Cha Cha was born......

It's called the Pinot Grigio Cha Cha Cha .......and it goes something like this.....

Assume position, Back straight, shoulders back, arm extended, pour into glass.....and RAISE your glass Cha Cha Cha.....

Here's the deal.....If I have to watch my "language" in front of children and limit my "french" to decibals only audible to dogs, then others should watch what they say about "world destruction" and "death" around my kids, Gabe in particular, because he does not perserverate over my 4 letter word choices, but he does over his mortality, and everyone elses. And it's endless. Just when you think he has calmed down, he's back up asking you the same questions all over again, cha cha *f*ing cha...A slip of the f word, ok, a well thought out creative use of the f word, is nothing next to the anxiety created by what the "D" word inspires the imagination to unleash.......I think "World Destruction" is a hell of a lot more offensive than any of Carlins famous 7 words you can't say on TV.....But that's just my *F*ing opinion......

Hopefully next week we will be dancing the "I Survived Salsa"...........

End the "R" Word

Mother's Day started out on a promise to be laid back and beautiful. A pre-Mothers Day celebration with my parents at a restaurant we love, followed by a warm bright lazy morning was enough to stretch into the day wide and slow, and feel the relief....but relief, in my world, is nothing but a tease.

It was supposed to be easy. A ride into a neighboring town for fresh bread, sea food, and Gabe's special bread, and then Gabe and I would finish off at our local grocery store for coldcuts and fresh fruit. Simple, right? It's never so simple.......

One of the employees behind the deli counter used to be Gabe's school bus driver when he started out in Just Kids, a Special Ed pre school. She would drive the bus during the summer program. Though it was years ago, he was only 4, she remembered us clearly. Gabe would get on the bus fully clothed and come off it completely naked. The matron spent the time collecting shoes and clothes and trying to get it back on. Gabe was non verbal at the time, and very hyper active. I was still trying to wrap my head around how to help my kid, and Will would wait for Gabe on the porch and run out to greet him the moment he spotted the bus. She remembered a flirty Carlos, seated on my hip, his wavy blondish tossled head of hair nestled in my neck , playing Peek a Boo through the strands of my hair...she remembered it all. I had filled her in on his progress, so when she saw Gabe, tall, fully clothed, handsome, loving, friendly and able to answer her questions, she was overwhelmed. She shared with a co-worker just how far he had come, and while we were all talking, the woman behind me snickered to her friend "if I had a kid like that I would have shot myself in the head. I could not deal with a retard."

Instantly I felt everything rise in me. I think the anger might just have lifted me off the floor. Luckily, the lady before me that was still being helped, realized lovingly, as real mothers do, that she needed to engage my son, who was holding onto a red ball, in conversation and steered him towards her husband who was an eyeshot and earshot away with thier daughter so that he could play show and tell. She instinctively took care of my child so that I could handle the situation accordingly. Her order awaited her on the counter, and my wrath was waiting to be unleashed on the "woman" behind me. I will preface this by saying that it is my nature to be flexible, easy going, to the point of dancing on indecisive. I am a big believer in underdogs, being one myself, and I hate the idea of hurting anyones feelings.......BUT.....when something so horrific is said, especially in the presence of my child, who could have easily heard her, about my child who was doing nothing out of the ordinary (even if he was it wouldn't have mattered), who was engaged and connected with people who were genuinely happy to see him, and enjoyed him, every primal motherly fiber of my being was going to attack harshly, mercilessly, and as profanely creatively as possible. I was shaking too fiercely to retain any type of composure. While I was able to verbally take her down, with reprimands also being offered from the employees who have watched Gabe grow up, and a few other moms on line who were also offended because they know and love someone on the spectrum, her hate shattered me. She is not unique. I have heard parents refer to thier childrens actions as "retarded", I have heard other kids toss that word around like it was a ball. Gabe has in the past come to me to ask if he was stupid. While I believe the kids that have grown up with him for the most part have been wonderful, he is asking for a reason, and I question what must have been said, or implied.


What people do not seem to understand is that certain words are really not ok to use. I am tired of the "PC" backlash. Not everyone can protect themselves and fight back without the sting of the stigma, because there is a classification involved. And quite frankly I cannot get over the arrogance, the sense of entitlement and the overwhelming ignorance of our society in general to think that people who have intellectual or developmental disabilities do not understand what is being said, and the intent in which things are said, so it's ok to continue to berate them. it's always the intention behind the word. You're a "retard" is meant to degrade and isolate. It is offensive. period. And those that think that people like me are ridiculous for taking offense to it, have never ever wholeheartedly loved someone with a neurological, developmental, or an intellectual disability. Period. Those people have never taken the time to really be involved in the day to day therapies and work required and the courage it takes, the spirit it takes for our loved ones to not only navigate in a world not wired for them, but deal with the preconcieved and prejudicial assumptions that hinder them more than any disability ever could. We all carry words that have validated our insecurities, we all know what it's like to have negative thoughts stop us from being who we are. I cannot understand the need to defend the use of this word. And if it's to be used again ( as I know it most probably will) to dismiss my son or any child like him, fair warning, I will not hold back. As shattered as that experience left me on Mothers Day, my resolve is that much greater. Please join the movement. Our kids are aware. Our kids deserve better. They deserve RESPECT, HUMANITY,ACCEPTANCE, PASSION and UNITY.

End the "R" word.......replace it with HOPE......

Simple

Beyond a Lens

The weekend started on a global voyeuristic note with the world swooning over a restorative royal wedding, and concluded with our President, always a perfect mix of dignified swag and elegance, earnestly confirming the death of this century's most diabolical clandestine terrorist by the hands of our Navy Seals at his command.

Nestled amidst the 2 polar events, my family, friends and I were gathered together on an endless grassy school yard under a warm bright sky to celebrate Special Olympics.

We were no longer virgins to this spectacular event. Last year, we were lost in awe, lost in the love the crowd gave the athletes, lost in the courage the athletes wore like medals, lost in the monumental feel of hope. Still on that high, we gathered our poster boards, loaded our cars, and caravaned our way down Long Island's highways and it's confusing streets. Needless to say, as the directionally challenged leader of this homage to gypsy travel, we were lost before we even started...but I digress...We found our way, and fortunately for us, as it turns out, Special Olympic time runs on Latino time......we are all fashionably late......

Anyone who knows my son, knows that he is one of the countless of kids on the spectrum with auditory processing issues and sensitivities. He has been anxious about having a Marching Band at the ceremony since last year. Though he had been told that perhaps there would be no Marching Band this year, my husband and I had been preparing him for the possibility, giving him options. Last year, Carlos walked with Gabe and they stood at a distance where Gabe wouldn't be affected by the noise. This year, the sight of tall feathered structured hats and glimmers of bronzed metal peeking over the backs of uniformed shoulders sent Gabe into cardiac arrest. Not to mention that there were 2 bands of bagpipe players and he had no clue the level of torment that could take him too...The panic in his eyes were rivaled only by the panic in his coach's eyes as he was trying desperately to reach me on my temperamental phone. Luckily, the promise of a long walk, an iphone to play with, earning of computers and cocktail wienies thrown in for good measure, helped Gabe compose himself. Master at negociations, my kid could broker union deals if it came down to food and fun.....yep, definitely my genes at work there....maybe if my genetic makeup was focus and success things would be different...but, again, I digress.....

During the walk my husband had the brilliant idea to give Gabe his camera. Gabe has taken an interest in photography lately. Every so often when I go to download pictures from my camera, I find interesting and intricate stuffed animal compositions in between the images of my sons. He has an very unique perspective, and is fearless with angles. We had gotten him a camera in the past (a simple Kodak) and in record time he broke it, so we decided perhaps he wasn't ready for it just yet. But, here, athletes rule, and there was time to kill, why not document it....so off Gabe went on his little adventures in between competetions and ribbon distributions, shadowed by siblings and which ever adult was "it" at the moment, and he took in the event.

The parade and the pagentary of local Special Olympic events are endearing. The hosting school makes a few announcements, local politicians, preferably one with a child with special needs, is moved to speak, art competitions are awarded and the school chorus sings...Banners are held high, paraders wave keeping thier arms in perfect V formations, local chapter of Knights of Columbus, Marching Bands, and Police representations appear with rehearsed precision....On the sports field, during competetions is really where true sportsmanship is highlighted. These kids and adults are cheered on along the way and they in turn cheer for thier own competetion. High fives, hugs, pats on the back, and a comeraderie that is rarely seen in the "typical" world, is innately embodied here. Everyone understands the work it takes to get to a place where despite the challenges of neurological wiring, chromosonal makeup, sensory issues, the environment, societies preconceptions, physical limitations, social skills issues, spirit is limitless, and it's in that spirit that we are all lifted. Here, during Special Olympics, we see it manifested communally, and it is celebrated openly, unabashedly, unapologetically...and it is reaffirming. What is equally important is the support we families recieve from our friends, our loved ones. I am profoundly grateful for the group of women I proudly call my sisters and my friends. They love my children, love my husband, and love me enough to embrace us, comprehend us, and come out to cheer with and for us in so many ways and on so many occasions. These are the women that when I confide my worries and fears, and I need to vent, do not dismiss my feelings when I am most vulnerable because they can't relate, they listen, they help me redirect myself, they make me laugh, and sometimes, even when words aren't spoken, the intent is felt, and it's always appreciated.

When we were all celebrated out, we returned home and Gabe handed his father the camera. The pictures were downloaded. We were left speechless. Gabe apparently had gone around asking people if he could take thier pictures. What he produced was a beautiful gallery of portraits, with some of the most expressive faces. Years ago I read an article about how children on the spectrum had trouble reading expressions and mimicking because of deficits with mirror neurons. Yet, my son, who we had to work hard on to achieve some type of eye contact (RDI helped the most with this) and who constantly asks you what you are feeling, loves portraits. It's apparent he has a gift for it. It's a love I share, I have always loved portraits and figurative work most of all. I suppose the less you feel you understand about people, the more intrigued you are by them. So, my son now owns his fathers camera, has taken it to school and has captured his classmates in the most natural and contemplative way. And I think perhaps for Gabe, a camera goes beyond a lens and it's his way to express himself, his way of communicating to us how he sees his world, how he approaches his subjects. Perhaps the clues to helping him stay more focused and connected lies in the angles he choses and the essence he captures......

Photo courtesy of Gabe's collection. His self portrait taken on May 1, 2011, in his 11th year......

His Brothers Keeper..........

He stands by the door waiting for me. He has placed the leash on his dog, as I get my keys and look around to make sure I have turned everything I need to off. I glance at him, everything about him from his boyish voice cracking into the depth's of a man's intonation to what seems like the daily changes in his height, is in transition. The cherub like quality that once defined his beautiful face has been freshly scrubbed away revealing glimpses of a maturity that is slowly reshaping his features. There are shadows were facial hair is beginning to show. A softness in his expression remains. We no longer stand shoulder to shoulder. I look up to my son. It use to be he would fit perfectly under the arc of my arm, now it is I that find myself anchored by his.
So we walk.......

In sync our steps normally take on the rhythm of our conversation, which runs the gamut from music and politics to Autism and his brothers future. It weighs heavily on his mind. The focus in the media, in our homes, in our discussions is always on symptoms, on the disorder in general, on the controversial aspects vaccines, genetics, environmental triggers, lack of funds, the devastating financial burden, the lack of help available for children as they age out of the system, on and on it goes....but what is often overlooked is the very real impact this disorder has on a family, especially on siblings that sacrifice so much more than most realize. It's Autism all the time for the siblings as well. As much as you try to focus your attention on all your kids, and celebrate each one for their achievements, the truth is that with Autism it's not just packing a bag of non allergy treats or relying on a social story to prepare, it's living with the constant stress that anything that you cannot control can happen to create a complete meltdown, and the sibling will be overlooked in the whole ordeal. You can come equipped with the Autism version of Felix the Cat bag of tricks to help everything go smoothly, but possibility is a constant presence with the family, and siblings are constantly on guard.

But Will, Will is something special himself. Will has always been extroadinarily compassionate and sensitive to his brothers needs. Will has always had a soft spot for the children in Gabe's groups. He has always been drawn to research, and he spent his own time thinking about how he could help Gabe get better. Every year, the request was the same on his Santa list, cure for his brothers Autism. When he blew out his candles on his 6th birthday, he whispered "don't worry mom, Gabe will speak soon caused I wished it. If I wish it, it has to happen." When we changed Gabe's diet, Will would read labels and help me pick out what would be ok. He and Carlos also followed the diet with Gabe until we could get Gabe adjusted. When we did Floortime and RDI, Will was there, upfront, trying to pick up hints on how to play with his brother effectively. And when we spent every other day driving all over Long Island taking Gabe to his therapies, Will and Carlos were in the backseat, instead of on a playground. My guilt was huge, and as much as I tried to compensate and give them each thier own time, I could not change the reality that when there is a chronic disorder with such a monumental ripple effect in all aspect of life no one walks out unaffected. It profoundly defines the way you interact and see the world.

On one of our previous walks a few weeks back, Gabe accompanied us on his scooter and raced far ahead of us. Will confided that he had been thinking alot about what happens when I grow too frail to deal with Gabe, or what would happen when I am no longer here. He turned to me and said," don't ever worry about Gabe mom, I will always take care of him. I'm going to be a director, and Gabe will live with me. I will make sure he has a good life. I will make sure he is safe. I love him". "Hey Gabe" he called, "when mom gets old you want to come live with me in the city?" "Sure!" Gabe yells out, "I'll bring my wife too".......Now, Will laughs and says "oh crap!" and then gets serious and says, "mom, he wants to get married....do you think he ever could?"...but I couldn't answer, I couldn't get a word out....because I couldn't get past just how spectacular my Will is. And how unbelievably blessed I am to have a kid who gets that part of being human is the responsibility to make sure that we care for those that struggle to take care of themselves. Will is kind, intellectually gifted, he is talented, he is philosophical, he is compassionate, he is sensitive, he is by no means perfect, but he tries so hard to do the right thing by others. Gabe's milestones are due in part because of his brothers, and how each one of them relates to him. Carlos challenges him, Will guides him. There is no doubt in my mind that Gabe regained his speech because Will wished it, because Gabe willed it, because we all worked so hard for it, because everything about our family is a group effort...and because we were extremely lucky.....there is no doubt in my mind that my job was made easier in many ways because Will is who he is and has happily lent his support.

But today's walk I want our conversation to remain focused on him. I have been having a hard time these past few weeks thinking about Gabe and summer, and middle school and all the uneasy changes I see coming our way, and the obscurity of it all. I know he senses this and he wants to ease my mind, but I want for this block of time to be all about him. I watch as the sun highlights the gold in his long brown layered hair, how it swoops around the slightly curved strands of hair to frame his face as it gently brushes against it. I listen as he describes his latest ideas for his cartoon series, and then skips from that to what bands were overlooked in the Rolling Stones list...he takes this personally....His face lights up when he gets a chance to share his thoughts, the smile starts in his eyes and when it finally makes it to the corners of his mouth he is transformed. We both feel for poor Reeses who still struggles to navigate his way through a
cones view of the world.....It's an hour from our front door to the end of the road and back.....it's good to be home.....

So he makes his way to his room. It's dark, it smells like a gym locker, there are guitars, cd's and clothes scattered throughout, a stereo system and a computer is set up to the right and left of his chair. He is a teenager, these are the signs. He is slumped in that chair, feet on his bed, Pink Floyd serenades him while he searches the internet.....Next year he becomes a high school student, and before I care to accept it, he will be moving on.....But at least for a few more years, I'll still have him with me, anchored by his presence........

and his love.......

His brothers keepers......his mothers pride......

April Fool

Often the emphasis is on what the child cannot do. Often the emphasis is on evaluations, on questionnaires that take you from 1 to 5, always to never...Often the emphasis is on what would be the best early intervention program, best protocol, best diet, best therapies....Often the emphasis is on parents who would move mountains to make sure their child has a fighting chance...Often the talk is inspirational, motivational.......

But more often than not, I find myself strapped by love to a pendulum swaying between guilt, desperation, fear, anger, determination, education, advocacy and hope, I spend so much time in the guilt and hope the rest blurs into one stroke. I see him growing faster than I am able to process, chronologically 11, developmentally no where near...He wanting to connect with others, and they so much further ahead of him. He had a meltdown today, and after he left I had one of my own. It's April Fools day and for the first time ever, he wanted to pull a prank on his classmates. The prank he wanted to pull off in his mind took the shape of a circus, and everyone was to participate. What tipped me off to this was the big white plastic hefty bag he put all his stuffed animals, instruments and costumes in, and was pulling towards the door. "Gabe you can't take this to school" I say..."But this is my prank" he anxiously cries. I poke and pry and he tells me his plan and I try to tell him that is not a prank, I give him an example, I tell him we can come up with a good one together....but he melts. He wants to invite his whole class over for the circus in his room...round 2...I try to handle it delicately. I tell him you can invite a friend tomorrow to come and play with you. The meltdown went to the next level, on the floor, banging his head with his hands, incoherent. He was so confused about what a prank meant, he tries so hard with the jokes, he tries so hard to figure out what our expressions mean, and we forget the sensory issues, we forget the processing issues, we have no patience and expect him to have all the patience in the world with us. But he was so lost inbetween worlds. He was so lost inbetween meaning. He was so lost for words. So he cried, and tried to gather himself up, tried to pick up the pieces, while I swayed between frustration, anger, tremendous guilt, trying desperately to get to hope. His bus came when he was just about calm. He gingerly put his coat on, slung his arm through the loop of his backpack and hoisted it perfectly in the center of his back. With his head hanging low I watched him methodically place one foot in front of the other. Today the bounce was gone. Later in the day I know he would have a science test, the universal irony is that the test is about the environment, mutations, inheritance, structural adaptations, behavioral adaptations, pesticides, and how they affect us. He has no idea how long I have studied these very things, though not for a class....for him...I watch him take the 2 steps up and disappear into the back of his little yellow ochre school bus. The doors close, and my heart misses a beat.

More often than not it is a struggle for every mom who loves her ""Gabriel to balance the unfair weight of trying to give everyone equal time in the spotlight while running a household, running errands, tending to everyone's needs, building experiences and memories while creating a warm comfortable life. Throw in special needs and the guilt of feelings associated with not being able to fix it all, the frustrations, the mystery, the injustices, the not being able to be superwoman when you really need super powers....When doing the best you can sometimes, or most times isn't enough.....when all you want is for your kid to have a chance at living a good, happy, healthy life....suddenly you are instantly strapped onto that pendulum.....

It is not lost on me that Gabe was able to tell me what it was that he wanted to do. That took alot of hard work, alot of research, therapies, and lots of luck...I stand on alot of shoulders...I feel unbelievably grateful to have that. Seven years ago I was in tears holding onto his multicolored battery operated oinking pig begging him to please tell me who gave it to him, and I got nothing...no eye contact, no connection to my tears, no recognition of my presence, he turned around, gave me the back of his head and hurried off to line something up and then to climb onto something else. So I do know hope. But there are those days, when you are at a loss between 2 worlds, between all meaning, when you have trouble with expressions and making sense of it all....and what feels like a circus somehow has to be a colossal prank, and it's April Fools, but it's no joke, because it is life lived on a Spectrum strapped onto a pendulum by love......and the swings it takes, from one instance to the next.....is as unpredictable as life is.....

Often the emphasis has to be on everything....................................
and everyone....................
and pendulums.................
and swings............................

and love.

My Dear William

On a luminous day in the Spring of 1989, I graduated in Washington Square Park. There, cloaked in purple and black, I stood shoulder to shoulder with what seemed like thousands of strangers and just a few familiar faces. It seemed appropriate that I should stand in the middle of a park where I learned so many lessons, but it was wishful thinking on my part to think that with one swift movement of a tassle I could easily move on to the next chapter of my life. My heart was still in the depths of shock, and the absolute sadness of loss, change, transitions, and denial. A crash course in all stages of grief at once, disregarding each of it's seasons.

His name was William. He was 2 years older and 20 years wiser. I met him my second day of school. A born dancer, his body had a way of creating images in the most natural of ways, as though he were at peace with the space he inhabited. His eyes were tender. To this day, because of his eyes, I equate celestial blue to kindness. He was my assigned dance partner, but became my chosen best friend. I think what intrigued me about William was that as serene as he was with his body and the spaces he inhabited in the external world, he was so conflicted with what moved him on the inside. In the mid 80's coming out was not very accepted. William's parents were not very embracing of his art to begin with, they immediately felt uncomfortable with it, and were not supportive. When I conga'd into his life, he was coming to terms with his sexuality, something that would take him years to feel comfortable with. Here he was struggling with his truths, and I too, had my own issues that shadowed me. I have always been tremendously quirky, a resident of left field, a procrastinator, a late bloomer, and extremely insecure. In grammar school I was bullied, in high school I hid behind my art and a raging eating disorder. Now college was a chance to have fun, to be open to new experiences, but self doubt always got the best of me. Days dancing with William, now that was therapeutic. I think he was the first person I truely felt I could trust again with my thoughts. He got my sense of humor, he understood my crazy. It was an equal exchange, I was more than willing to love him for who he was, an intelligent, loving, talented, generous, beautiful, gentle man who wanted nothing more than to be loved, respected and accepted. We both wanted to fit in. But, this was the mid 80's, and it was the age of HIV/AIDS, it was the center of the paranoia storm, and ignorance did reign. He went on to join a dance troupe in France and leave me rather abruptly, mostly because in a last effort to appease his parents he thought perhaps we could be more than friends. I knew better for the both of us. I was honest because I adored him.
Late March of 89, I recieved a rose. Out of nowhere a man came up to me and said someone had asked him to deliver it. That evening I had a horrific dream involving William and at the suggestion of my mother, went to see my dance teacher to see if she had his contact info. Instead she had a book of poems he had left for me by e.e. cummings, and a letter asking to be read in the park. We walked to the park together. She knew he had Aids and did not want me to be alone when I read his letter. It was a suicide letter, It was his goodbye. It was his rose. The letter was his way of making peace with me. It was an unusually warm March day, the thin branches on the trees still rather bare lest the pinkish green buds just emerging from thier tips....the sky translucent blue...the noise, the hurried bodies racing, the cars in the distant, all fell away....he was gone, and I couldn't save him, I couldn't help him, I couldn't thank him, I couldn't tell him how much I loved him, I didn't get the chance to say goodbye. He didn't give me that chance. He loved me. He told me. He believed in me. I believed in him. but it was never going to be enough. It wasn't enough that my heart broke for him. 22 years later, it still breaks for him.


I could never understand why there is such an issue with anyones sexual orientation. I could never understand how a parent could turn thier back on thier child because of thier preference. I could never understand why any rights should be denied anyone. Because I love and honor the spirit and life of my dear friend, I teach my children that EVERYONE is equal and there is absolutely nothing wrong with being true to who you are. I have been criticized for doing just that but quite honestly, what's in your heart has nothing to do with who you love, it has everything to do with how you love.

William died in the Spring, his favorite season because he loved the idea of rebirth. My oldest son was born in the Spring. We named him William in tribute to my friend. Often I wonder "what if" he had been able to live out his life healthy and happy. How I would have loved for my husband and children to have been able to get to know him, and grow with him.. What turns would his life have taken? What beautiful things he could have contributed given the chance.....

The difference between where I stood in that park on graduation day that Spring, and where I am at now, all these years and lifetimes lived later is that will the shock has dissipated, and I have come to accept the overwhelming loss, I have not made amends with it. I do not think I ever will. His was an unfinished life, and I feel a responsibility to somehow help finalize it. I just haven't figured out how. This is where he would have stepped in and guided me....
This is where he, beautiful as he was, young as he was, lovely as he was, would have told me to knock it off and pay attention..........

His name was William

I love him


And I miss him..............................

The Rainbow Connection

I am 19 years old, running haphazardly in between the human traffic that commands Broadway, Austin and St Marks place, the streets of Greenwich Village, NYU's playground. In hindsight, I could have just lifted the tremendous pad I dragged along above my head and windsurfed to class, but I have always been a bit "entertained" and delayed, so anything other than the most primitive of plans never develops. I nervously enter my color class. It was one of the first real art classes that I have ever taken. I am extremely intimidated. I am self taught, so immediately I feel the entire class has one up on me. With one look around, it is evident I did not get the dress code memo, and what is even more apparent is the disdain for anything ordinary that my classmates have. Their eyes register everything exterior about me, from my mousy brown pony tailed hair, to my non tattooed skin, my worn jeans and plain tee shirt, their conclusion, I'm in the wrong class. No uniformed rebellion equals no artistic integrity. They didn't get just how afraid of needles and how indecisive I am, or that my grandmother would kill me. I know where I stand, now to find a place to sit and listen. The first lecture was about Childhood Heroes. Everyone was asked to off the top of their head name someone whose life inspired you or changed you, or who you connected with profoundly. In a room full of old souls, this newborn was struggling. These people had serious hard core tastes at a very young ages. I was floored when I heard someone say Camus was an early childhood hit. That kid must have been something at the sandbox. But the most amazing thing happened when he got to me. All I had to say was Jim Henson, and there was a release of genuine open smiles, and the darkness and heaviness of that room was lifted. Pure joyous multicolor in just one name. He was the common thread, what connected us all. The rainbow connection. Immediately everyone sat quoting a favorite muppet, the mohawked Junior Camus loved Mr. Snuffleupagus, another suggested we play a game to see which character was most like us, and for the rest of the semester those would be our names. I was redeemed. It no longer mattered that I was lazy at artisfying my look, I was an Ernie at heart, I was instantly understood, and that is what they embraced.


I am now a 43 year old mother of 3 boys, sitting in my kitchen, mousy haired pony tailed, very worn jeans, tee shirted, stretched marked, and a bit disheveled by the bumps along the way... this time the ordinary has become my extraordinary goal..Still, after all these years I'm missing Jim Henson. Sesame Street and the Muppets are sweeter an experience the second time around. My first go at it was unrestrained wonder, the second, a homecoming of sorts, with a deeper appreciation for the sheer genius of Henson's humanity. My middle son, a member of the spectrum, in his most regressed and disconnected state was able to relate to the community of muppets on Sesame Street. For some reason many of our ASD kids are their biggest, most loyal fans. I suppose it's because everything about them is safe, open, sensory friendly, warm, funny, engaging and innocent. I suppose it's because the spirit with which it was created was about awareness, celebrating uniqueness, about education, about fun, with love, kindness, and belief in the power of imagination. It doesn't matter how you are wired, when something evolves from a place of goodness and YES, the response is always OK......Come and play, everything is a-ok.......

It's not easy being green......I understand Kermits lament and eventual acceptance of who he is and how wonderful that is......

But Green is a walk in the park. Try being grey. Gabe's favorite color is purple, but he is perpetually sporting the grey. In color class we were taught that white is the reflection of all color, black the refraction of all color, therefore neither are a true color. The irony lies in that every sensory processing disorder that my son has can be described perfectly by either the hyper nature of complete reflection, or the hypo innateness of total absorption, each leaving Gabe struggling in the blur of grey....grey and white matter...grey is what slips through the cracks....grey is being forever 20, not a teen anymore, but not old enough to be considered legally independent....The color of Hope? I'm betting it has to be grey, because it's that grey area that is never quite clear, quite defined, where nothing is definitive enough to be one thing or another.....it's pure suspension....pure possibility.....if not let go.....I sit here in my kitchen with the view of a sky coated in a rich magnese blue. Our world is about to suddenly explode into color around us as April waits with it's green grass, tulips and cherry blossoms.....and meanwhile, I can't see past the grey....Gabe is going into the Middle School next September. There are going to be changes in the way they handle all the kids that are marked in grey....Anyone who has a learning disability, or classified as my child is, would no longer sit in an inclusion class setting. So now, again I face the insecurity of change, dealing with a school district whose first concerns are always financial before educational, summoning the optimistic spirit of Jim Henson while looking for rainbow connections.....trying to find my son's place on it, enveloping him in purple......

"Who said that every wish would be heard and answered, when wished on the morning star.
Somebody thought of that, and someone believed it. Look what it's done so far.
What's so amazing that keeps us stargazing, And what do we think we might see?
Someday we'll find it, the rainbow connection,
The lovers, the dreamers, and me"

Jim Henson/ Kermit

26 years

I have my high school reunion coming up. It will be 26 years since I have seen many of my classmates. 26 years. Twenty six years. That's legal. That's a masters under your belt. That for many is already newly wed status or young family, for others it's career, happy hour and creating a life... 26 years...That's hard time......The impact of the number came to dawn on me as I stood topless in a dressing room of a bra shop staring at my frazzled image and my directionally challenged breasts. How the hell did 26 years pass me by that quickly? I stare harder....I have been out of breath and out of sorts lately. I suppose much of it stems from my innate response to cure all that ails with rich decadent foods and cocktails like a Jewish Mother would lovingly ladle and dole out homemade chicken soup...but it's catching up to me, and not in a good way...My deep appreciation and loyalty to a sedentary life has not helped either....and it's hard to find the motivation to do something you really don't enjoy doing...Lately, putting on my pants is a workout session all it's own....Squatting, really? Unless I'm in a public restroom, it's not something I'm inspired to do....But, here I am in front of the mirror looking at evidence A, B, C and DD's, knowing full well something needs to change. I stand sideways for further inspection, and suck everything in...nothing happens....use to be, 26 years ago, 20 years ago, 9 years ago, I sucked in my gut and I would be lifted...my posture would change, my rib cage would reveal itself, my shoulders would go back and everything would fall into place....Now, nothing moves....not even a little twitch...oops....

So I tuck and fold and get set to pay the bill. I stand there calculating the monetary costs...joking I say "wow, that comes out to $40 a breast", and Celia and I giggle.....but the cost is far more substantial. I think of how I am feeling lately. How unbelievably tired I am. I think of many of my good friends who are rounder, older, wiser for the most part, but depleted and lost in the same way I am. I think of the changes we are in the midst of, the shifting of the earth, the shifting within our lives, the recession, the insecurities, the transitions that leave us now preparing to take care of our parents, while still raising our children...and the images I have stored away in my mind believing somehow that perfection had to look a certain way...peaceful, orderly, toned, secure....not as lived in as my home is, not as lived in as my body has become.....but then, it's lived in. And that is the key. While esthetically we know beauty is in the eye of the beholder, the reality is that ageism, and weight discrimination is embraced. I know health is the most important thing we have, and I do have to begin to take care of myself. I know in my case the extra weight affects my heart. But lets be honest, who's expectations are we trying to live up to here? And just how much weight does that carry in our collective psyche? So easy to say, why care about what anyone else thinks but you, when your thoughts are somewhat influenced by others....Feel valued? Feel beautiful? Feel whole?

Which brings me back to my relocated ladies and my search for undergarments that will treat my extra flesh with tenderness instead of encased ground meat...In the midst of the tragedy of Japan, everything falls short and seems so ridiculously silly....In the midst of lives being washed away in seconds, everything seems so small....However, how we feel about ourselves, and the way we live our daily lives is important. And here, 26 years later, in the middle of catastrophic natural disasters, and uncertain times, somewhere in my 43 year old being is an 18 year old girl looking forward to seeing her old friends, suspended in retrospect and reconnection...In hopefully something that fits.....The 80's are back .......everything old is new again......

.

Person First

There are a spectrum of colored markers fanned out in front of him. Anchored by a deep connection to a world of outlined animals that find animated life at the ends of his fingertips, he tells his stories. He is proud of them. Gabriel's Big Book Of Art prefaces a stream of stapled pieces of paper. He has filled the first 5 sheets, and has giggled, slapped the sides of his thighs, poked the bottom of his feet straight through each page. I study his work, trying to find clues, knowing his thoughts exist here, his feelings exist here, his stims come out here. It was through his drawings a few years back that he was able to express his profound feelings of inadequacies because of his differences. In a sheet of outlined floating faces, their in the left of center, was Gabe's round outlined face with a dunce cap perched on his head. It read LOSER vertically down that sharp cone. His was the only face not smiling. There in black and white were the most complex, concrete feelings in the simplest of fluid line. He was only 7 at the time. I sat huddled with his team, trying to find a way to help my son navigate not only his innate differences and disabilities within the external world , but also had to figure out how to begin to build up his self esteem so that he could feel what I do and know what I know, that he is in so many ways my hero. I wanted his inner world to have a strong foundation.

Building a sense of self worth takes a lifetime. I'm not going to pretend I solved this in sitcom speed with jokes, laughs, a few scripted soft moments, audience sighs and applause...no commercial breaks...No, it has been slow, and applied as needed, and I'm still in the beginning stages. Mothers who are raising a child with special challenges and needs are in a precarious place. They say when you loses a sense, the others strengthen as a result. Well, when you sense that your child can be seen as less than because of a diagnosis or a classification, you become hyper vigilant, extremely sensitive to the use of words, and non verbal form of communication takes on a new level of clarity. What is left unsaid becomes as palatable as the impact of the words that were served, savored and digested. But mostly, it becomes our mission to make sure that our children are seen as children first. They are given names. They are unique. They have typical attributes just like any other child. They should never be defined by thier disability, and thier disability does not suggest a lack of ability. They are whole. For years I told anyone that would pay attention that just because my child has a disorder doesn't mean he is one. But when words come into play, so many forget that our children process everything they say, even if they are wired a bit differently, or that the processing is delayed. They feel it, they sense it, they know it, because they are human. They have profound thoughts and emotions. Just because we are incapable of thinking outside of the box, or just don't understand it, it doesn't mean that they are not being affected by our callous use or misuse of words. For all the times that I tell Gabe he can do something, he is talented, he is brilliant, he is smart, he is funny, he is loving, there are so many more instances when outside of my radar, he is referred to as "autistic" "special needs" "disabled", "delayed" before he is addressed by his name, and hears and feels "can't" ,"different", "weird", not good enough....

There is a movement called Person First Language. It came about as a means to help a community of people who happen to have a disability been seen as a Person First. Simple concept, life altering results. It's not a denial of a diagnosis, it's putting the child, the person before it. It is acknowledging that the person is on equal footing despite their challenges. It is respecting an individual enough to see beyond the can't and embrace all the can's. It is about honoring integrity, restoring dignity, and helping to develop an awareness to the way we view and speak to one another. It's about awakening a sense of humanity that has long been ignored. If we demand that our school districts commit to this most simple of changes, and might I add, cost effective, it's free, and lead by example, perhaps it will ripple into the communities that support the schools. Perhaps if we hold those we elect to represent us to also joining this movement, perhaps they will begin to understand that what they vote for effects a person, not a disorder.

Gabe focused on completing his book for his teacher. Despite my pleas for him to fill in his lovely animals with color, their forms remain pristine white, only the delineated is granted a primary or secondary color. Years ago I would have sold my soul to the devil to have a chance to hear him speak to me, to have him be able to express a thought in the way I could understand it. To be able to not melt at the sounds of a band, or a high pitched anything. To be able to take him for a walk without having to race after him or hold my breath at what might set him off, or what might come out of him..to play appropriately, to not play parallel.... I would have given anything to see him with the other children actually interacting. While we have been able to get him to a place where he can answer our questions, and he can be part of a band, trumpet section thank you very much, Gabe, a loving, funny, silly, bright, talented, artistic boy who just happens to have Autism/.ADHD has a long way to go. And I, ever a Union member, (local Warrior mom) am calling on negociations with both celestial and not so celestial beings, threatening strikes, offering compromises, in the hopes that HOPE reigns, and somehow, Gabe and his peers, all find themselves thriving in a community of love and acceptance.....

It started innocently enough......

It started innocently enough. My youngest son was running late this morning, in an effort to beat the starting bell, I drove him in. When we pulled up, the children were exiting the cavalcade of yellow school buses, seeking out their respective cliques. My maternal instinct kicked in and I read the crowds of children like a mommy version of Evelyn Woods, skimming groups like pages, looking for my son. My heart skips. From a distance I see a familiar coat, a little larger than the frame that holds it up, His dark chocolate colored hair, scissored cut with longish layers, begin to convince me that this could be him. The dense backpack hung a bit more to the left than the other kids, same as Gabe, the sway from side to side, the height, just like Gabe....And then he sees his friends, the casual tilt of the head, the calmness in his hands, the way he merges with them and their stride immediately finds unison as they walk together towards the open school doors. My heart trips. Wishful thinking meets reality.

On February 20, 2011 Doonesbury, a comic strip created by Gary Trudeau, ran a story line where a playmate is disgusted by Jenny McCarthy because she popularized the "debunked"Autism Vaccine debate, called her a menace to the public. She's upset that it hurts the image of a playmate. Knowing Gary Trudeau has always sarcastically played with social issues, and because I am so close to this particular topic, I don't know how to read it. I can see it as both a pro and a con. But it comes to run at a particular time in my life when I find my dear friend looking for her options as to how to best protect her son. Years ago, she diligently followed a vaccination schedule only to have her normally developing child vanish right before her eyes after the last set of vaccinations. Where have I heard that story before? Oh, yea, it's mine and so many others. Her battles to retrieve this child were the typical you hear about. Her son now 15, has also been diagnosed recently with type 1 diabetes and has had seizures. Her school district is mandating that she give her son the DTP booster shot, they refuse the titers and religious exemption. She has deep fears and they are justifiable. Her oldest son has been fully vaccinated and up to date, her youngest when she gets there will be vaccinated, but this child, this child who regressed into a severe neurological disorder AFTER vaccination, whose health is fragile, and whose immune system is compromised, this child is different. The Doctors she has spoken to are weary of writing a medical exemption. She fears regression. She fears putting her child again in the line of danger. She fears what would happen next. The school district could not care less.

Her fears are mine as well. If you don't vaccinate your child you are seen as a bad parent, if you question the vaccine schedule or the preservatives in a vaccine, you are criminalized. Yet what kind of a parent would you be if you continued to sheepishly follow the rules knowing full well the impact it has had on your child? It's far more than just vaccines. It's genetically modified foods, it's far more pesticides in our foods than we can keep record of, it's the traces of antibiotics and psychotropic drugs found in our water, it's the silent contamination of high fructose corn syrup with thimersol that was kept quiet for 4 years, and was continued to be put into our name brand foods because these companies they didn't know either. It's the chemicals dumped into our streams, our oceans, our lakes..It's the fumes that are spat out into our atmosphere, and the chemicals that line the cans that hold our foods, or the plastic bottles that hold our drinks. It is not just a vaccine issue, it's an issue about how we nurture what is suppose to nourish us. It's about knowing and respecting the limits of each individual to tolerate the overwhelming amount of toxins we are exposed to daily. It's about not putting a compromised child in a compromising position. It's about allowing the parents a moment of peace. Parents who, from the moment of regression have been combing through every last instance, every possible thing from conception on that could have contributed to their child's diagnoses, while simultaneously researching, fighting, financing,educating, brainstorming, holding onto hope, redefining normalcy, going about creating possibilities as they are being villainized because they demand better. Because when you question, you get classified and labeled.....Just like they have been trying to do to Jenny McCarthy, just like they did to Dr. Andrew Wakefield. How not wanting to vaccinate a child who regressed after vaccination is completely anti-vaccination I'll never understand.

Whether Mr. Trudeau's comic was an observation on a hot button issue, or a jab being that his wife, Jane Pauly, had less than 6 degrees of seperation from GE, or that it was all flippant, the truth of the matter is that while a tremendously powerful industry is continued to be protected by our elected officials, our medical professionals, our institutions, our children will remain at risk. Medicine is necessary. Vaccines are necessary. Research is necessary. Scientists should not be compromised, but niether should we. We do need pharmaceutical companies, but as they say, absolute power corrupts absolutely. There needs to be a real focus on safety. And if we don't have the Jenny McCarthy's of the world, playmate or not, what chance do we have?

It all started innocently enough..............
My heart......

From the car

From a safe distance, I sit removed in my warm minivan, watching the slow moving feminine figures convene by the white school doors. Art Club will be let out in a few minutes, but I am not tempted by the promise of contrived small talk. As a matter of fact, small talk takes me down every time. After "hello", it's a matter of moments before I manage to say something inappropriate, giggle nervously, and become unraveled. I have not mastered the art of unraveling. Some do it slowly, like a seasoned Burlesque dancer, calibrated, teasing their audience through several afternoons..Not me. There is no theatrics, no build up, no artistry. It's quick, one minute your pants are up, the next they are at your ankles and you're falling over it, quick. The kind of quick that you don't even realize it happened until you make eye contact....So I sit there and admire how the moms have brushed their hairs, how they give off such relaxed auras. Zoloft? Prozac? Valium? They stand with their hands on their hips, some have their arms crossed, few in their pockets. Despite having been signaled out for "talking" with my hands, I have never noticed until now how reserved this community is with their hand gestures. Or any gesture that would give hint that something is off balance. Yet it's the off that seems to rule my life...

For the past week I have been helicoptering between my youngest who has had a strong asthma attack that still challenges us, and my middle child who apparently serves as host for out of control yeast party. Yeast brings about many behaviors, and waging wars against it requires a strict reworking of his diet, cutting back on sugars and all things that turn into sugar, a protocol of probiotics, GSE, biotin, etc...and a massive amount of patience and self control. Asthma, has had me looking at diet differently as well....easing up on the dairy, more broths, liquids, cleaning for real....the walls, the mattresses, the blinds, the sheets, the toys, under the furniture....and yet, despite my best efforts to channel my inner cleaning woman, which by the way sucks and needs to be fired, it has made little difference. Off, off, off........followed by a few choice hand gestures, a stomping of feet dance, and self medication.....maison du chocolat........

It would be nice to be able to handle the small talk.

missing my babies

Tender, the days of youth

open and close like soft wings

cupped mid palm and breath

Visual thoughts.....

I would have thought that at this point in life my 43 years would have served as a better guide. The balance between hindsight and foresight seems ridiculously off, foresight always falling short.
For a few months I could barely find the colors, let alone the words to express what was going through me. I don't know if it's a mid life issue, or a redefining life issue, or a reclaiming life issue...but the more I delve into paint, into glazing, into trying to understand my medium, and achieve translucency, the more transparent I became. Hours spent trying to find a place on the canvas, or the bottle where the subject would make sense, meticulously manipulating the image just so, left me contemplating the whole concept of belonging, of finding a space for yourself, or finding yourself.

I'm a visual thinker. I'm a visual learner. I'm also ironically enough, extraordinarily myopic. I am both near and farsighted. I am Mr. Magoo with Lady parts and hair.... Without help of my coke bottle glasses, or my contacts, I cannot see my hand in front of my face. My husband, who has amused himself throughout our 17 years of marriage playing a little game that he likes to call "Hide the Glasses" can attest that without my visual aides, I stumble. Both my vestibular and proprioceptive senses are compromised.

Before Gabe was diagnosed, I did what innately comes natural to most of us, I envisioned what life could be like for him, as well as Will and Carlos. This is not just reserved for our children, we do this all the time, vision boards, imagining ourselves in a certain position to establish a goal, we day dream, we fantasize. The power of visualization is profound. It has shaped our moral code, it has been such a fixture since the beginning of our time. It has established the black and white of it all, the good and evil, the SECRET, just about every abstract concept has a very visual concrete anchor.

After diagnosis I had to learn to take one day at a time and replace my dreams for my son with small attainable realistic goals, like sitting for 3 minutes, or relearning to gesture. The difficult challenge for someone like me, who needs to know what something will ultimately look like, how I can expect my son to function in future, what his life would look like, is the not having a clear picture, and not having the power to fix it. I hate the insecurity of it all, the uncertainty. I hate the mystery, or rather the denial, the lie, the cover up of it all. I hate the double standards. And while I know that no ones future is clear, or without strife, those who love and parent children like Gabe understand my fear.

Here is what I have been battling with....while the way I envision things pre and post classification have changed somewhat because of it, I'm starting to realize that in leaving the other senses out of my mental images, I am doing myself a disservice. I need to apply the Linda Mood Visualizing and Verbalizing techniques here . I'm the one that thinks I lose 40 pounds and all will be well. I win the lotto all will be well. I hit the big AUTISM CURE lotto and all will be well. There is a disconnect between end goal and journey. There is a disconnect with what looks right and what may or may not feel right. There is a disconnet with the process. There is a disconnect with touch, taste, feel, balance,sound and vision. There is a disconnect with illusion, delusion, disillusion, reality, fanatsy, mortality, immortality, purpose, belief, hope, continuity, promise, potential, limitation, fear, fearlessness, bravery, vulnerability, insecurity, knowledge, indicisiveness, clarity, confusion, devastation,restoration, power, empowering and powerless....
For years I've tried to fit in, tried to find a space that I could inhabit, somehow give back, and the twisted in me can't help but revel in the humor of it all, here in life trying to find a place to fit in, and then we look towards burial plots and epitaph to find our place amongst the dead. George Carlin had this terrific routine about "Stuff" and where we put in...I have become overwhelmed by the stuff in my head, in my heart, in my house, in my closets, under my bed, and in every crevice I can shove something in, bigger house, bigger body, bigger brain won't solve it. Maybe if I stop inhaling the turpentine & linseed oil.....

We tell our children to be who they are, when we all know that means as long as you conform. If you really have the courage to be who you are, you get crucified, and then, if lucky, your image gets culturally canonized while the essence of your truth gets lost in translation and molded to suit other peoples greedy ambitions. When you are courageous enough to embrace who you are, you get ridiculed for your weight, your sexuality, your looks, your beliefs, your values, your disabilities. So, when I tell my kids that it's ok to be who they are, that it's thier responsibility to themselves to be true to who they are.....when they go about finding themselves, as they begin to do so now, and looking for a place where they feel they belong, I feel the disconnect between the messages we send and the reality they face. The visual of a world that embraces diversity and free thinkers as opposed to a society that still challenges what equality really means...I feel the disconect between a Government where newly elected Republlican Congressmen and our new Speaker of House has already said they refuse to work with the man we elected President. I feel the disconnect between being having an opinion and being judgemental. And I feel a disconnect between our humanity and human nature. What we envision is powerful. Perhaps how we conceptualize our vision is where real changes can come about, but mostly its our willingness to allow it to manifest the way it was meant to be.

Reeses

Last Tuesday unraveled in the most unexpected of ways. By 8 am, instead of preparing for the bus, I was racing down main street in my minivan with 2 very worried kids and one extremely ill dog on my lap. By the time I pulled into the parking lot, Reeses was near death, and I was devastated. Our healthy pet quickly deteriorated right before our eyes in a matter of hours. How could this have happened?

In our home, our pets are an extension of our family. We are unapologetic animal lovers. From our everyday moments to our extraordinary heartbreaks or milestones, our pets are prominent and present loving beings that give back far more than what they are given. Tears streaming down our faces, his lifeless body cradled in my arms, perhaps clued the vet to just how important Reeses is to us, but it was no where near enough for him to not have coldly made clear to us that we would have to be responsible for the bill in full if he is to survive, or not survive the night. Every attempt to save Reeses would be documented and charged. If we could not pay in full, Reeses could not have a long shot at a recovery. There would be no hope. Where have I heard this before? Oh, right, for almost every therapy or DAN doctor I ever looked into for my own son Gabe. The price of help for your child in the Autism world is exorbitant, and if you cannot afford it, your child cannot have the services that could help him thrive. The business of helping is a business, it is always first and foremost a business. A profitable one at that. It's no wonder many are denied the coverage they pay into when they do have health insurance, and those without cannot afford the medical attention they need until it's too late...It's no different for a pet. Except, when you can't afford to save a pet you can put them down. Death by lack of funds.....The same is illegal for humans, but it is legal to deny a service needed, to the extent that it's needed, because they can't afford it. How do we continue to justify this?

I left Reeses at the vet that Tuesday and drove the kids to school. Reeses had seizures, convulsions, vomitted non stop. His numbers & vitals had the vets concerned and confused. They thought maybe he had liver cancer, maybe it was bacterial, maybe heartworms....a plethora of testing was done. Vet number 1 gave me no hope. Reeses could barely lift his head and could not stand. But he managed to give us kisses when he saw us and his spirits lifted. My husband, poor man, was left to console me. "Since when do you completely trust doctors?" he asked...."I have a gut feeling he will be fine...the cost? We'll figure it out, you do what you have to do." And here is where I am reminded of why I fell inlove and married this man. It was not his looks (though he is handsome) or his cheery disposition and bordering feminine sensitivity (completely dripping with sarcasm here, he makes David Letterman look like a kitten)....it was because his intelligence soothes me..it was because in my most vulnerable of moments he gives me hope. He trusts my decisions and instincts. He helps me stand up and dust myself off. In my hours of indescribable loss, he holds my hand and lends me the strength I need until I've found my own again. While most men would have taken the needle to Reeses themselves, he looked at his children, he looked at me, and he said "he'll be fine, and if not, you loved him and he loved you, you gave him a great life." The next few days Reeses got progressively better. Friday he was sent home with a slew of antibiotics, a special diet and a ton of vitamins and supplements. Turns out, Vet number 2 has a son on the spectrum and a deep faith in the impact of a healthy diet, vitamins and supplements. Vet number 2 also never took away my hope completely, and recognized the "miracle" of Reeses recovery as also having a strong support system visiting him twice daily, giving him the extra push to beat the bacteria that had invaded his body, inflammed his liver and kidneys 3 times it's natural size, and had left his immune system ravaged.

There is no irony left unnoticed here for me. I know life is fragile. The beginning of the summer left us with the reality of cancer and a recovery from a successful operation. The end of the summer was marked with the shock of Reeses sudden illness and a reminder once again that nothing should be taken for granted. Especially those closest to you. Hope is vital. Love is vital. Gratitude is vital. Life is vital. Respect is vital. Kindness is vital. Support is vital. Humor is vital. The choices we make have great impact on the lives of those we love, and sometimes on the lives of those we don't even know.

Reeses came into our lives as a shelter dog, happy to have found a home. He is a brilliant companion with a personality that towers over his little shih tzu frame. His outstanding overbite punctuated by one solitary tooth protruding out, coupled with his intense stare has lead the most resistant to succumb to his powers of silent persuasion and share a meal with him. Even at the vet's the assistants fell in love with him. It's easy. He is joy with a bit of an attitude and a swagger. He is always curled up by my feet, but we all know it's the other way around. If anything is a endorsement for shelter & rescue animals, it's this....unconditional love is absolutely free of charge with these little guys. The light they give is definitely healing. The impact thier lives have on yours, priceless...............