Moving towards independence....

Every 3 years, children who are classified and have an IEP (Independent Educational Program) are re-evaluated. Social history is retaken, IQ tests given, educational and language assessments are administered. Gabe's 3 years were up and he was given these tests. The result is a triennial meeting where we sit and discuss the outcome. Around a large table sits his 2 teachers, his 2 speech teachers, his reading teacher, his school psychologist, his occupational therapist and the special ed director. I take my place amongst the village is that is helping my child.

Every person who tested him had the opportunity to speak. He is doing far better than anyone thought he would have been some 5 years ago, but it is the future we look to, so it's revealed that the goal is to make him as independent as possible. The aide will gradually take a complete backseat. He is to be weened off. How long that takes depends on many factors, but middle school is only 18 months away and my guess is that they would like to see him independent by then.

The day after the triennial meeting Oprah made her big announcement. Holy crap....only 18 months to ween me off of my afternoon crutch, my self help guru, my chocolate and cocktails personified....who is going to redirect me?

Silly, isn't it? Yet, for the past 8 years not much has made sense to me. Oprah has taken her show on a road to self discovery and awareness, with an emphasis on community, kindness, empathy, I have been hooked ever since. I'm not saying every show, or every season is an aha experience, but I am saying without a doubt conversations that needed to get started, have. I'm saying that womens health, womens issues, world issues have taken the forefront in a way that really hasn't been dealt with before. While 60 minutes and other news shows, take an objective journalistic point of view, Oprah's show handled multifaceted issues regarding women with hard facts and respect towards the real emotions experienced by women, never reducing them to just statistics, never trivializing trauma. She pioneered a renewed interest in reading and pushed the value of education in a way that has never been seen before on a talk show. Talk became the operative word, a full blown verb. It's as though the show became a vehicle to enlighten an audience and offer a perspective many might not have had the opportunity to seek. The professionals she invited onto her show became celebrities in their own right. The power of Oprah really is the ability to share her enthusiasm for an elevated quality of life that comes from being connected to your surroundings, in a very real and honest way, never losing her humanity and always striving for ways we can be better. Do better. Are we doing our best, are we doing what we are meant to be doing? Are we meeting our potential? Are we present ? What do we know for sure? And for those of us who are still trying to figure it all out, we look towards Oprah for guidance. So an announcement like this is in many ways like the end of an era. Even if she would design a new talk show for her new network, this show, as we know it, still ends.

So, while Gabe's big task at hand is to begin the process of becoming self sufficient and independent enough as to not require an aide to help him redirect and regroup, my big task is to put everything I have learned into place. Gabe will be taught to advocate for himself. He will have to learn to keep up without having the extra support to fall back on. Now it's not the question if he just can't do it, it's the understanding that he can, and breaking it down into smaller steps so that he'll be able to manage it. Huge stride.

As for me, it's also about learning to advocate for myself. It's about finding the disclipine and courage to do better. It's about continuing to embrace the bigger picture while paying attention to the details that enhance life. It's about being open to change, and embracing the possibilites......

25 years, Oprah said 25 is the perfect number....I was born on the 25th.....maybe I should start betting on that number....................

Pepe

Thanksgiving was always my grandmother's holiday. She would spend months perusing gourmet cookbooks carefully planning out the last details of her culinary moment in the sun. A few days before Thanksgiving, she would put the final ingredients down on her list and call for my grandfather, who would appear at the doorway dressed in his typical garb....polyester pants, a flannel shirt, his Members Only jacket zippered all the way to his chin, and on top of his head, his signature black beret made of wool.

The two would take off in their two tone Buick , navigating through the streets of Woodside until they made their way to the removed supermarkets with the discounted prices. He would calculate every penny looking for bargains, she would exchange his carefully chosen items for the brands she was loyal to. He never had a chance. She won every time.

Though Thanksgiving is always associated with my grandmother, the night before belonged to my grandfather. When I was young, I would go to their house the Wednesday before, right after school, to help prepare for the feast. As soon as I would arrive my grandmother would send my grandfather and me back out for last minute additions to the list. In the car I would tell my grandfather about my day and he would tease me, let me listen to my radio station and he would sing along to the latest Micheal Jackson or Elton John hit, my all time favorite is when he did his best Bruce Springsteen. You haven't heard Born in the USA until you heard it in a Spaniard/Cuban accent...stunning....In the market, he would do his thing, calculating and trying to save, while I would do my thing and exchange his choices for the products I knew my grandmother sent us there for. He again, never had a chance. One way or the other, she always won out. But here is where we would do our thing. After we purchased what we were there to buy, we would take a ride over to the Entennmen bakery. There we would pick up a box of coconut macaroons and we would share it all the way home. This of course was hidden from my grandmother who would have yelled at us for wasting time. The rest of the day into the next, I would sneak his favorite appetizer and desserts over to him. The piece de resistance was her infamous Pumpkin cake with the cream cheese frosting which we would attack and then try to reconfigure so that she wouldn't be able to see just how much was really missing.

My grandfather was a man whose wit was sharp and dry. He loved quietly, faithfully and unconditionally. He was forgiving. He was thoughtful. He was layered without the complications of ego. For those viewing from the outside in, because my grandmother was such a strong personality it could appear he was her puppet. For those of us who watch helplessly as my grandmothers memory was taken first, we realized he was never a puppet, but an unbelievably strong man who spent a lifetime deeply inlove with his wife. He let her think she had the control she needed to have, and then he took care of her. My grandfather was a man of his word. And though his words were few, they were fair, they were honest. I never doubted he loved me, he was always there, quiet, by my doorway in his polyester pants, flannel shirt, Members Only jacket zipped up to his chin, and his signature black woolen beret snugly worn on his delicate head.

Every year I make my grandmothers Pumpkin cake with the cream cheese frosting. As I mix the ingredients together, bake my cake and frost it, I think of her......but I as cut it into squares and place it on the serving tray, it's all about him. But then, it always was.......

I'm missing my Pepe...............................

Growing pains.....

Lost in the veridian hues of green, I hear your voice flippantly declare that I have peaked as a painter, you haven't seen growth in years. You suggest that I consider writing, pointing out that it seems to come more naturally to me, more fluidly. With that said, you also mention that I have a habit of over elaborating, that I need to edit. So much for fluidity.

Be careful when you speak of someones passions as though they were dismissible. There is a fine line between constructive criticism and destroying confidence. Hurtful words slither into cracks of what should be a solid foundation. While you believe you are supportive, and have been, it's those words that have been hiding in the corners that make me question not only my talent, but more so, why I would have allowed anyone's opinion to carry that much importance.

Easy to state that I have spent years neglecting my art, not challenging myself the way an artist should because my son's developmental disability needed every ounce of my creativity and my attention. Easy to state that my own fears and insecurities stood in the way of artistic growth. Easy to state that Autism takes hold over your life until you figure out a way to get it back, and work out some sense of balance. Somehow, pushing the art envelope falls onto the to do list right after finding your voice, helping your son find his, navigating language the receptive, the expressive....opening and closing circles of communication...finding and teaching the nuance of nonverbal communication...researching therapies, biomedical interventions, etc, etc.....

6 years ago I took great offense when 5 neurologists told me to institutionalize my son because he would not amount to anything. Here were 5 professionals who couldn't answer a question, who did not know a thing about Autism suddenly knowing that an institution would be best. I knew my son did not peak at 2, I knew despite it all that there was so much in him, and I had to figure out how to bring it out.........

And now I say to you that I might not have grown as an artist all these years, but I have grown as a person. I have more to say now than I could have ever thought. Simply by having to go back to the basics, re-examine life, redefine normalcy, differentiate between a wish and hope, and appreciate how important it is to be mindful in every respect, from how we treat our environment to how we treat one another. How we live our lives, how we chose to love, how we chose to express ourselves, this never peaks....it evolves.....we evolve.....So if it appeared to you that perhaps I have peaked as a painter, my delayed response is, how can I have peaked, when I still have so much more to learn?

With brush in hand, a vibrant pallette, maybe I can work things out....................

Walk this way...............

November blues are brilliant, I suppose it's easier to see the sky now that most of the trees are bare, but I would have preferred the leaves hung around on their branches a bit longer, and the day follow suit. This darkening at 4 in the afternoon mentally does a number on me. I'm guessing I am not alone.

So today I had company on my walk, my husband came along with me. We really have never walked together for the sake of walking before, it has always carried a very specific purpose. Today was a treat. He walked Clementine, I walked Reeses. We looked like a commercial, with the open winding road, autumn leaves scattered about, 2 dogs on complete ends of a spectrum in every way imaginable, and a pace set more by our years than our ambitions. We are old enough to know by now that delusions of grandeur can pull middle age muscles without mercy or remorse. I like the idea of being able to spend this time with him. I find comfort in his swagger. There is comfort food, and then there is the comfort you find in a glance perfected through the years, or in a well worn smile, the raised eyebrow that starts the giggles, or the swagger that wades through the cement with a mixture of realism, synicism, sarcasm and a hidden deep seeded hope. Part of me wants to be able to do this often, make this part of a routine of sorts....but the rational side of me knows it's best to take it for what it is, a beautiful start to a day, and be grateful for it......gratitude........

So, we ended up going to the diner for lunch. Sitting in a booth, far to hard for those not blessed by the bootylicious gods as I was, we shifted through the menu. I can't help but look around and see moms sitting together laughing. There are a few groups of elder folk scattered about, a few married couples, a few friends, perhaps life long by the relaxed way they seem to just belong to each other. The noise, the collective nature of voices rising and drifting became nothing more than a humm, and I spent the morning and the afternoon with my husband, away from it all, but more connected to everything and everyone. It's been a long time since so little meant so much in respect to me as a person, as I am. For all the extra weight I carry, for all the daily battles and the pushing and the researching and the hurried painted bottles or whatever is on my to do list, today, for a few short hours, I got my break.....and it was wonderful............

Long time no blog

My husband pointed out to me just 2 days ago that it's been quite some time since I blogged. The irony is that he started this blog for me as a way to help me get disciplined about writing...which truthfully would probably be the first thing I would have been disciplined in when it comes to me. Well, wait, there were the high school anorexic years.....Lord knows not eating takes great deal of self control..... but that obviously falls into the dysfunction that seems to have defined me so well.

So he asks why I haven't blogged in so long. Despite scattered flu's and colds that took turns invading our bodies, despite the laryngitis that robbed me of my ability to warn, plead my case and yell like a lunatic....despite the running around, the unexpected last minute projects that were assigned in September...I answered briskly, "I just haven't got anything to say".....

Here's the thing, most people who know me real well would find that hard to believe. Not only can I find conversation just about anywhere, but I can assign a feeling or an opinion on just about anything and if I can't find out the facts, my imagination runs wild. Yes, I know, when you assume....but I am a card carrying member of the "made an ass out of me and you"club, so the concept of possibly blowing something out of proportion doesn't intimidate me, it's my specialty.....and sometimes what I do best. Go big, or go home, right?

But I have been more quiet lately, at least on the outside. Silently, I have been struggling.
It's easy to disguise "I don't know how to say, or describe what I feel", or flat out depression. With a shrug of a shoulder, a roll of an eye, a smirk and sway of the hip, it instantly gets transformed into an "I don't have anything to say"....and I do what's familiar....I shortchange myself again.

So here is a bit of what I couldn't find the courage to say.......
I'm really tired, and I feel so guilty admitting that Autism and ADHD and all things neurologically challenging, financially challenging, educationally challenging....hell, anything challenging, lately has left me unbelievably challenged.....and overwhelmed....I can't stand the instability, the insecurity, the not knowing......and I needed a serious break, at least a day of not having to think about it.....or a night where I can go to a resteraunt with my husband and try to channel a somewhat acceptable facimile of a woman.....Do crusaders get tired? Do they doubt their impact? Do they lose themselves on their way to battle....

There was an article that came out around Veterans day that said Mothers of children on the spectrum suffer the same type of stress as solders and veterans. I have never been a soldier or a veteran, but I can tell you this.....anyone that is in a caretaker role and has a mystery like Autism on their hands, and knows that the only chance their kid has for a loving, caring, environment and a shot at fulfilling their potential, whatever that may be, has an unbelievable fight ahead. It's the fight that drains you. It's the constant thought of having to be alert, on guard, cautious, that leaves you depressed and seeking signs to keep your faith going strong....Things like, encouragement from friends and family......a moment of contained normalcy at the end of the day....an unexpected answer at the dinner table...a good hearty laugh....Gabe, telling me he loves me.....Carlos sneaking onto the couch with me and cuddling...Will, always helping me out, always dreaming of something new to create....my parents, who always have been so incredibly supportive....and my husband....who knows it's not that I have nothing to say, but that I rather not say anything than really hurt someone......The guilt is not about it being hard, or being a puzzle, it's about not having been able to fix things, to give Gabe the typical beautiful childhood...the guilt has been about being angry that my child was robbed of a chance at a normal life by a disorder that my gut tells me has nothing to do with God's plans and everything to do with our inexcusable ignorance and greed and the damage it has done to our environment. The guilt comes because I love my children more than I could ever express and I don't ever want Gabe to feel any less because he is so much more than I could have ever hoped for.
But I am tired, I am stressed. I am a bit depressed. I had stopped my "healthy diet" I had stopped walking. I had stopped blogging. I had stopped so many things. I gained weight. I am out of breath. A vision of loveliness.....so sexy I can't stand it.....I'm too sexy for my life too sexy it hurts....I can't zip my life into my pants it's so sexy......ah....Frankie Goes to Hollywood...Relax don't do it.......now there's a good motto....

I need to get over myself. It's mid November. Thanksgiving is 9 days away. Gratitude, gratiude, thoughts of gratitude.....gratitude journal....gratitude Godiva chocolate......gratitude....Godiva....Godiva chocolate martini...GRATITUDE!!!!!!!!! YES!!!I'll drink to that!

Here's to faith....here's to hope......hey, if anything, I have been consistently hopeful, and anyone who lives by hope knows the intense regimen one must keep to maintain it......

So it begins again.........
One blog at a time.....
Tomorrow I shall walk and eat a healthy breakfast......
and take it from there............