As I wake up for Valentine's Day, I am not going to be thinking about the usual, ugh! Lol! Today, I am instead thinking back to the fall, to a very special occasion I didn't get to write about, a beautiful wedding between two amazing individuals, who, once they met each other, grew a Love so amazing, so brilliant, they wanted to celebrate it from the tops of mountains, at the tops of their voices, with all of their loved ones there to witness it. I had the joy of photographing this insanely-in-love couple on their special day. And not unlike many couples on their wedding day, I felt their love and their romance was contagious. I left with a renewed optimism for finding love, for finding that one true soulmate, for feeling something so pure and so unencumbered I had no fear of telling everyone in the world about my absolute devotion and commitment. I love to photograph a couple on their special day, or any couple so in love on any day they choose to share with me, because as I cherish capturing those intense emotional moments on camera to live for eternity, as they know their love will. I love to feel the feelings in their faces through the camera. It's a rare special gift they are giving me, letting me in to share that moment, their feelings. Most of you know by now, and if you haven't seen my hashtags on Instagram (#THISisAutism, #LifeThroughTheOtherLens, etc.), you must have stumbled on this blog from somewhere else, haha! My son, the coolest kid their is, lives with autism. He is greatly affected by his autism, and when he had the formal diagnosis by his second birthday, the developmental pediatrician sat across from us at her desk and said (as I remember it), "All those visions you have for your child's future, get rid of them. He will never go to Prom... He will never graduate high school... He will never have a driver's license... He will never get married." Yes, it was that harsh. And to this day, I feel the hardest part of it all, and I imagine with most special needs parents, is getting over all of those dreams, all of those visions you had for your child's life and future. But is Love not a human condition? Is Love not a human right? It's so fundamental, like breathing, and needing water. Can any of you really say you've never been in love? Or don't want to be in love for most of your life? How can a person live and not feel Love? How can my son live completely without ever feeling Love or feeling the companionship of a relationship? These thoughts have kept me up at night, more so than most of the other basic fears. I can live with my son not graduating from a university, if he chooses not to. I can be happy with him having a job that I may not feel is high-acheiving if it makes him feel a sense of accomplishment. I can be very happy with him having a community he is part of and feels a sense of belonging with his peers. But how can he feel complete without Love? In the mid-1980's, life for parents of autism changed as they knew it when Temple Grandin first spoke of her experiences as a person on the autistic spectrum. She opened people's minds to the facts that people with autism were intelligent, were feeling, could hold several advanced degrees, and could have jobs and even better, careers. She enlightened us that being non-verbal was not a reflection of intelligence, it was a disability not unlike any other impairment. That moment was life-changing for countless autistic people and their families who lived with them and understood what they were experiencing after that moment. Temple Grandin opened minds, opened doors and opened opportunities for all autistic people with her revelations. Thank God! So back to the wedding in September... the difference with this gloriously happy couple in love? They are on the autism spectrum, and everyone who played a roll in the wedding... also on the autism spectrum! This wedding was my Temple Grandin moment! Anita And Abraham are two lovely adults with autism who met at a support group meeting for autistic people, seeking friendship and a like-minded community. Not unlike all the millions of people who fall in love everyday, they did so in a very regular, very typical way, just like anyone else. And when they decided to announce their love from rooftops for everyone to hear, they wanted everyone to see that people with autism can fall in love, can have a relationship, can get married and do so with the support of their autistic community! The officiant was on the spectrum, the dj had Asperger's, the harpist was non-verbal autistic, the cake-baker, a child on the autistic spectrum, the flower-girls and ring-bearers... all on the autism spectrum. And I, being a mom of an autistic boy, and known for my photos of children with autism, was proud to be the photographer. Before the wedding, Anita and Abraham had some rocky encounters with family and were feeling pretty low. We were standing in the hallway about an hour before the ceremony and I took my camera off and talked quietly with Anita. I told her that her and her fiance were in love and getting married, changing their lives forever, but this was such a huge life-changing moment for so many parents like me. They were making an enormous step for hope for us, they were giving us back a dream that we all had for our children with autism, that dream of them finding Love. They were our Temple Grandin! Tears flowed in Anita's eyes, Abraham held her cheek gently, whispering how much he loved her, and they walked down that aisle, with several kids with autism happily dancing the evening away following. But with their vows of commitment came a restored dream of Love and relationships for all of our children. So today, I don't feel optimism for me necessarily, but for my son. He will one day feel romance, and butterflies when he sees a girl, and he will hopefully not have too many heartaches before he finds "the one." But I know he will find is one true love, one day! Thank you Anita and Abraham! Congratulations! And may you have a wonderful and romantic day today and for the many many days and years to come!! I will always cherish being part of your special day! You might enjoy some of the other numerous articles that have featured this amazing couple and momentous wedding... Yahoo.com/couple-prepares-first-ever-autism-wedding ABCnews.go.com/florida-couple-autism-marries-autism-wedding-celebration Foxnews.com/florida-couple-weds-in-first-all-autism-ceremony Dailymail.co.uk/Autistic-couple-marries-autism-wedding-celebrating-relationships-people-spectrum-disorders Zoom Autism Magazine wcvb.com/news/couple-with-autism-marries-in-allautism-wedding-celebration Washingtontimes.com/finding-love-with-autism-couple-to-wed-in-public http://www.loveandautism.com/all-autism-wedding/ http://hellogiggles.com/couples-wedding-autism/
I haven't had the chance to write since last week, it was sort of draining, no matter what the outcome, and then I decompressed the same way a few million people did over the weekend, by binge-watching House of Cards. We had our big annual IEP for Charlie... and it was possibly one of the best days... ever!! For those not entirely familiar with an IEP, it is another acronym for Individual Education Plan, a legal document with a legal meeting, to determine your specials needs child's specific disabilities and needs and a plan to accommodate according to FAPE, yes another acronym, for the Free and Appropriate Public Education regulation from the US Department of Education. If that sounds daunting, it's nothing compared to the general intimidation and legal ease thrown around at one of these meetings. There are lawyers and advocates that specialize in just this particular field of law and this particular event. There are psychologists that specialize in special needs parenting and thus in this meeting. There are endless books, websites, and blogs about this crazy IEP-thing.The first of these annual IEP meetings, or just IEP's, occurs when the child becomes eligible for public education and therefore the services that that may provide, usually at age three. Our first IEP was possibly one of the worst days of my life. I've written about it extensively before on my previous blog (Mommies in the Hood), but that did me no favors in this world where I find diplomacy does wonders in every situation, so I will spare you my traumatic details. Needless to say, the following IEP's created stress, sleepless nights, tireless research, data collection, report collection, school visits, therapy visits, etc.. The worst part for me, and I can imagine for many parents, is the hour after hour of several so-called experts telling you the detailed ways in which your perfect precious child "cannot," "will not," or "shows no sign of" intent, progress, or will. And to top it off, they have to, by law, include the general education teacher or equivalent expert, to tell you in his or her highly educated opinion, how your child is different from a typical child and is just not going to be like other typical children. (*This is where you can picture daggers piercing into the parent's heart, over and over again.) In accounting for all the laws that need to be addressed, I don't feel anyone stopped to think that there is a sensitive parent at the end of that board room table who is crying, no, sobbing, on the inside, while showing a steel face listening to all the cold, hard truths. It takes some time to get used to this process, to sort of prep yourself, "Remember, they aren't speaking about Charlie as a kid, they have to address his needs." We've now had one for Charlie each year, and a few or more in between; you can call an Emergency IEP if things are not going well, to change schools, to change therapists, to request a different service, etc.. Each one brings a little more experience, a little more knowledge, and an amazing ability to just stick it out as another one of those unpleasant things we parents have to do to get the job done. All of us Special Ed parents can look at each other at morning drop-off and with one word have complete understanding. "Hey Caroline!" I say. "IEP." She says. And with that one word I have absolute understanding of her pale face, stealy gaze, and determined walk that morning, or the exhaustion that I see her carry the next day. Or my friend's boy in the autism class next door who is not doing well; he hasn't had enough help, he has a health issue that is being ignored. "IEP," we tell her at pick-up. "Yup!" She declares! We haven't had too much luck at these IEP's for the last six and a half years. A divorce and battling parents never help the situation. And finding the right mix of therapists and teachers is key, the advocates to perfect your goals and provide additional knowledge of schools; you need your "Dream Team!" Back in the beginning, I didn't know anything about this except for my absolute hurt that my child wasn't being seen as having potential. I felt like I was beating my head against a brick wall. I heard that I was called a parent in denial, "I'm sorry, honey, kids with autism will often never..." one autism teacher told me. (AAGGGGHHHHHH!!) One school psychologist hung up on me, she put in a report that I was a drinker and that Charlie may be the result of fetal alcohol syndrome. ARE YOU FRIKKIN' KIDDING ME?! (Besides for my silly #oh-look-wine posts on Instagram, I'm really not a drinker! Never have been!) It has been a big challenge after even bigger challenge, and that doesn't include the actual special-needs parenting or work we put in! Now we have our "Dream Team." I have to give them each credit!! (Don't worry, I do that outside of this blog!) And I have learned something that I find can be a little unusual: you get more bees with honey than with vinegar. We don't go to due process. We stay at that IEP until it is agreed on! By everyone! This started as a necessity, I didn't have too many options at one point, but I truly believe it turned out for the better. I want every one of those experts to agree with my opinions and my belief in potential for Charlie. I don't want to say, "You better agree to this on paper or else I'll take you to court." I understand that sometimes it is necessary and our legal system and laws make this an option, but I want to convince everyone to see Charlie through my eyes. I want them to see his potential as I do, to believe in him. I want them to understand that should he have the help he needs now, they will not be supporting him as an adult with even more severe needs. Don't get me wrong, it's not easy! It has taken me beating my head against a brick wall. We have stayed in IEP's and adjourned for four days. But we get there! And this last week, we really did get there! Instead of hours and hours of "Can'ts" and "Won'ts" and "Will nots," we got "Goals met," and "Progress made!" It was beautiful to listen to. We have a truly extraordinary teacher now for Charlie, she is tireless and gifted and persistent. We have an amazing BII and BID for Charlie, more acronyms for his behavioral aids, or assistants. As one person described progress, the other one enthusiastically said, "Yeah, and if we shape it this way, we can achieve this..." It was so exciting to watch these talented clinicians and teachers get as excited about Charlie's potential as I do! I would have had tears in my eyes if it were not for the stealy emotionless gaze I perfect days leading up to each IEP at this point. Haha! But in all seriousness, it is the best feeling in the world to hear your child on the sprectrum is making progress!! I now have proof that the possibilities are limitless. Never listen to what you do not believe to be absolutely true, or what you believe to be true for your child. My message to parents? #NEVERGIVEUP! #DoNotLoseFaith! Fight for your child’s services! Fight to make those involved understand the words “MY CHILD CAN…!” Be told you're in denial, if that's what it takes, because only you know your child inside and out, and if we don't have faith, who will?!
It's a cloudy gloomy day this Saturday in SoCal, the Pineapple Express or something I heard, so it's a mellow day around here. We aren't outside running around (because really, we get chilled below 65! lol!) and Charlie seems to be enjoying the down-time playing in his over-toy-stuffed room. I was working on my computer, still working on my new website (ugghh!), and I knew I had a note around here somewhere that ended up bugging me until I had to take apart every "organized" pile on my desk! I have a little notebook/journal I keep with little mementos, notes from a few people, a few snapshots not on my computer, and random notes with a password or something I might need at some random time. I opened it and was completely consumed by the little pieces of paper I had saved, although I have been sitting eighteen inches from this notebook every day. What caught my eye now seems like my lesson for this weekend. I have a picture that my ex-husband snapped in the first minutes we came home from the hospital after Charlie was born nine and half years ago. And with it is a piece of journal paper with words, or actually values, that I remember writing one night in bed while I was pregnant. I was up in the middle of the night, as happens while you are pregnant, imagining my future little bundle. I sat there in bed and wrote down a list of values I dreamt for my child.
LOVE KINDNESS EMPATHY SINCERITY PASSION RESPONSIBILITY CONSEQUENCE PRIORITY HONESTY LOYALTY FAITH MORALITY
I know, a few aren't so much values, but I was pregnant, it was the middle of the night, haha! The years that followed the moment I wrote that note, or that moment when we brought our newborn baby boy home from the hospital, were none that any pregnant woman imagines when she's happily expecting or none that any parent can stand to think as a possibility when you are walking into your home with your new baby for the first time. The years that followed brought Autism into our immediate awareness and as part of our lives for ever more.
With a diagnosis of Autism comes a range of emotions, of feelings, of consequences, of change and growth, for yourself and your child, for many years, and I imagine for years ahead of me still. One of the most intense and heartbreaking times comes in the first year when you realize the dreams you dreamt are not what you will have. And then the subsequent guilt over whether or not that is actually sad and the torment of realizing you will dream new dreams. You will still have your child. Your child. You still have immeasurable love for your child, perhaps more, it's just not as you dreamt parenting would be. But as my mother pointed out when I came home from the hospital with a boy to a pink room and pink lace baby clothing (yep, that's a story for another time, Charlie has been full of surprises from the get-go!), it's still the same baby that was growing in your stomach. He's just different than you thought. But that's on you, he has no idea what you were expecting, he knows he's truly "him."
With a child with Autism, over many years, we begin to lose count of the number of "no's" and "can'ts" and "won'ts" we will hear. From doctors saying he "won't" do this or that, or teachers saying "he can't do this," or even friends and family giving us painful "no's," he's not included, I think one of the blessings in disguise is that we learn to celebrate the "yeses!" We celebrate them with extreme joy and over-exuberant enthusiasm!! My child ate a new food?! You better believe I'm throwing a party with that new food as the centerpiece!! My child addressed me as "Mom" and not with a squeal? Woo-hoo!! Tears of joy followed by a silly happy dance and uncontrollable giggling for twenty minutes! Our small achievements are HUGE!
What struck me in this note that I found, was the fact that these values were my dreams for my child. Sure, I had dreams of him having tons of friends, going to the prom, graduation from high school and maybe 'SC, marriage of his own, kids of his own; but these values were the important things to me. I wrote them down and kept them! And, after everything we've been through in all these years, after Autism has transformed our lives, our homes, our dreams, these dreams, my dreams for my then unborn child remain, and in fact, came true! That thought gives me tears of joy. I feel a happy dance brewing!
My Charlie, with full-on "severe" Autism, has all of these values on my dream list! He has more love than anyone I know, and receives more love than anyone I know. He is the kindest soul there is, anyone who meets him agrees. I have a graphic that I have posted sharing Charlie's empathy, he caresses the cheeks of anyone crying or upset. I think if there is one thing you know from a person with Autism, it's sincerity, there are no deceptions, they are straight forward. The same can be said for the rest of the values, consequence, loyalty, morality. Charlie has them in abundance.
My lesson shared today for any parents with Autism is this... What did you dream for your child? I mean beyond the prom, the graduations, the future grandkids... what kind of person did you hope your child would be? Has Autism really taken that away! I would have to bet, No! Our lives will forever be changed, forever be the unexpected. But today, I am celebrating. I am celebrating the small, but HUGE dreams come true!! Charlie is a dream come true!
** happy dance ensues**
Yesterday was such an amazingly beautiful day, even for southern California standards. In Malibu, about 75 degrees and not a cloud in site. So we went out to the beach and enjoyed the sand in between our toes and the wind in our hair. We even ran into a friend. Charlie has been out surfing several times over the years, as I've posted in the past. Charlie's surfing buddy, Steve, was there, having spent the whole morning surfing, and then going back out with his camera to capture some of his stunning surf-photography. His work is really gorgeous, I am totally in awe of his photography, I can't wait to see what he captured yesterday! But really, he's just such a super cool guy for being a nice friend to Charlie. Charlie has instinct for good people, and he immediately spotted his friend!
A little bit about autism: I think it might have been Steve who once described taking kids with autism out surfing. He said (if it was him, in any case the writer said) something like, imagine all the sounds of the world being so overwhelming and loud, imagine the many people feeling like they're all coming at you, your world is chaotic and noisy and frightening at times. Then you go out into the ocean, the noises get further and further away, the mass of people left on the beach, with a barrier of water between you. The rocking motion of the waves lull you into a tranquil calm. The overwhelming sounds of life and the confusion of voices is replaced with ocean mist and water ripples. I totally see the ocean calling Charlie. He knows our exit off the freeway, and with his one word command, he insists "Beach!" from the backseat. You can see the pure joy on his face in these pics. And it makes Mom even happier to see! Over the years, I've had a few heart attacks as he makes a b-line straight for the water and will go right in! I've heard from other autism parents, "Oh, I couldn't let him go." And believe me, even last summer, I'd yell his name all day long, running after him and dragging him out of the waves. Then at the end of the summer, he began to listen and stop when I yelled. Yesterday, he actually turned around and came back to me! Huge! So, never give up on the progress, and never give up trying. It's worth it, for their joy and for the big accomplishments in the end!
Please excuse some of the photos, my mom grabbed my camera and shot them as we were walking around. Thanks Mom! I appreciate them, but there's a few focusing issues! Haha!
This is Jaime, an amazing mom of two boys, yes two, with autism, a gorgeous wife to a really cool guy who happened to win the Today Show's hot dad contest, founder of the organization Auptimism, which hosts fun and inventive playdates for kids on the autistic spectrum and their entire families here in Los Angeles, and most important, a beautiful friend to my son and me. One of the reasons I think Jaime is so great is that we share our outlook. We are parents to autistic kids, but we do our best to live life to the fullest, live with hope and positivity, don't take anything lying down, but cherish all the good things we have, don't complain about the rest, and as Jaime coined, we are #LivingWithAuptimism.
This winter break, I had five days on my own for the first time in, well, nine and a half years. As a divorced mom, and a mom with a kid on the spectrum, that five days can be both an eternity, a savior, or a sudden source of anxiety... what will I do with myself?! It was a mixed bag of emotion for me. At first I thought this was great, Charlie gets to hang out with his dad, winter break is so long, that would be a relief to the boredom. I felt excited to not have to deal with therapies, driving all over town, and then... what will I do and why would I want to do any of it without the coolest kid there is? When you have a child with autism, everything is intensified, I guess as it is with the kids, in a funny way. Our children with autism hear more intensely, feel more intensely, and our parenting is also then more intense. Eating is more difficult, learning and school is more difficult, sleep can often be an issue, as well as any self-help such as dressing and grooming or bathroom issues. Most of us take this on with the same intensity with which our children feel it, because we love them for everything they are. A lot of us would do anything for a little relief or help, but we wouldn't change any of it for the world, knowing this is now who we are. It's our version of parenting; an exhausting, tiring to your core, intensely-feeling version. In that, we sometimes forget what we did or what were were before our children had autism, or before they were born. We too often leave jobs and careers, change our entire group of friends, sometimes family fades away. Forget about hobbies or interests! And often our conversations, trains of thought, and do I dare say, free-reading, revolves around autism and what we can do for it. Before I had my son, I've mentioned on my website and on social media, I was a model, I studied architecture, I loved art wherever I could find it, and I lived out of my suitcase. I was traveling everywhere and finding any museum, gallery, or cafe to sit in and pull out my notebook and pencils. I don't think I'd want to go back to that, but I'd so much rather be sketching than reading behavioral therapy techniques. And as it goes, my son hates art, hates drawing, hates the texture of clay or finger paints, he hates anything remotely related... well, he does love sharpening pencils. As I was about to pull out my hair at the thought of missing my son for five whole days, as the very thought of the holidays without my child grew nearer, I got online and saw where I could go. Why not be my old self? Could I remember how?! Sure! Everything, after what we do daily, has to be a piece of cake! Charlie hates baking Christmas cookies anyway! So after checking that my family and friends were all tied up with plans with loved ones and significant others, I decided to use my soon-to-expire miles (because I don't get to use them too much anymore) and take a little spontaneous vacay on my own!
Frannie is in first grade, takes karate and her favorite part of school is hanging out with her friends. Avi is her little brother and he loves games on his ipad.
|Charlie's 1st day in this new school|
|Trying to avoid homework with silliness.|