HELP EMMA'S DREAM'S COME TRUE
Adventure! What exactly is it, and how do you know if you are having one? I used to think the obvious: the no armed no legged guy that climbed Mount Everest on a skate board, the woman who single handedly saves 17 children with a toothpick… you get the idea. Then I would think about the people around me, real ones this time, who go rock climbing, kayaking, and surfing, people who go on missions trips and run soup kitchens. Now THOSE people are living an adventure! But what about me?
About two weeks ago, I started to look around and seeing lots of people living lots of “adventure”, and I started to wonder if I was missing out; if life was passing me by. I mean, my kayak is about to dry rot from lack of use, I gave my bike away, and I hate to admit it, living in the backyard of Acadia National Park, but I really am not into hiking. Soup kitchen? I can barely get Emma’s special foods cooked! So, couple that with my grey hair sprouting like weeds, and some serious cellulite on my legs, and I began to wonder if I HAD any adventure in my life.
But here is the thing: Adventure comes in lots of different forms, and actually, nothing is an adventure until each of us personally makes our experiences into an adventure. For the third grader I once taught who had no running water in his house, a trip to the bathroom at school WAS an adventure. Kayaking down rapids for the outdoor guide that does it everyday may not be all that exciting. Recovering a child from autism and other health issues might bored you to tears.
But to me, it’s the grand adventure of a lifetime. It’s a wild ride, where I learn to let go… and take control, I look inside myself and become all I can be. I learn about how to live in the healthiest way possible. I learn what a true friend is, and what I want my relationships to look like. I learn what’s really important to me. I learn to love more deeply and completely than I ever knew was possible, no strings attached. I learn all these things, in greater depth each time, over and over and over again. AMAZING, and the adventure of a life time!
So, I invite you to join me with prayers, good wishes, and even a donation or two, as I set off for another chapter in this adventure I am living. Next week I will travel back to The Autism Treatment Center of America for New Frontiers, the third and final class in the three class series that trains parents in the skills they needs to set up and sustain a Son-rise program for their child. I will be meeting up with other parents and professionals using this profoundly powerful program to transform children with Autism and other special needs. I’ll be sure to let you know how this chapter goes, and what amazing things I have learned.
So, enjoy your rock climbing, snowmobiling, kayaking, etc. Those are all amazing adventures, and someday I may partake. But today, I am living my adventure of a lifetime. And, why? Because I make it an adventure. And when I choose that, I create happiness in my heart, which in turn creates a power and energy unhappiness does not, and allows me to choose to love my life, my adventure, my world.
Do you love your adventure, whatever it may be?
It's funny how life provides you with lots and lots of learning opportunities. Sometimes, it doens't feel so funny. This past week has brought us the opportunity to say good-bye ( for now) to two family members, as they have "graduated", or as many people say, they passed away. One was my husband's dear, sweet "Nanny" and the other my Great Uncle Dan. Two people who will be sorely missed. We were able to attend Nanny's service, as it was right here in Bar Harbor, on a beautiful fall day, as well as to help with cleaning her apartment out and things of that sort. My Uncle, on the other hand, I will have "make do" with sending letters to his wife and son, as attending his service was not possible right now.
During this time of good-byes, I chose to go for an afternoon to the land of regret. I had a lot of it at first. I hadn't been able to do the things I might have liked to for both Nanny and Uncle Dan. Visits, frequent or infrequent, local or long distance, have not always been possible. For Nanny I did manage an occasional visit and cooked for her on a few occasions, stocking her freezer with homemade, easy to reheat, good food to nourish her.
Uncle Dan, well, not so much. He lives about 7 hours away. We were very close when I was in college and traveling back and forth from Ohio to Maine. I enjoyed he and his wife Louise so much, and love meeting his second wife at my wedding, a bit after Louise's death. We sent Christmas cards and generally stayed in communciation with each other. It was really great. Then Emma was born. I mean, do a really need to say more? He was out of sight, out of mind, and when he did come to mind, I didn't act. Even the Chrsitmas cards stopped.
So many balls in my life have been dropped in the name of caring for Emma. It's easy to have regret. No very helpful, but easy. You see, I pick the things I want to prioritize, and what I want to let go of. I did it then and I do it now. Many people don't acknowledge this fact but it's true. We are always doing what we want to do. Always. Would I have changed what I have done for the past 7 years? No way. Do I wistfully wish I could put another 12 hours in the day so I could have done more. Absolutely.
So what's a girl to do? Well, first off, leave the land of regret behind. Check. Second: do right now, what I want to do. Pen to paper I will write my dear Uncle's son, and wife, and I will tell them each of times I thought of my uncle, wanted to reach out, and why I didn't. To let them know that even if my letters didn't come, in my heart, I was there.
You see, parenting a child with special needs doesn't just happen when it's convient, and autism doesn't just "go on Holiday" when someone is sick or dying, or death hits your family. It's all the time. And the demands are more than you can imagine. Sometimes, balls get dropped. It happens.
Please know if I have dropped a ball with you, it's not for lack of love or trying. I love deeply, but not perfectly. And maybe, just maybe, that, in itself IS perfect.
It’s been interesting to see how things have panned out since we put up this website. We have had incredible support in the form of lots of fans( over 250) from our page and things of that sort. For this we are deeply grateful: your “like” clicks, and your prayers and hopes and comments and donations for Emma are so deeply inspiring, they help us keep going when the odds seem against us.
At the same time we have had the opposite reaction from many we thought would be supportive. Our phones are not ringing here at the Stanley house, and there is an unmistakable lack of support from many we thought to be real true friends and supporters. Are we disappointed? We have our moments. But in general we are excited. You see, we don’t see someone’s opinion of us as a good/ bad/ right wrong thing. We don’t let it sway what we believe in.
We all go through times in our lives when we change. Change happens. When it does some of those people who have stood by you and been near you might not anymore. It’s OK… no wait a minute, it’s just fantastic! What if we all put out there just who we were, and what we stood for, no holds barred? Now I am not talking about blasting people and throwing heavy judgments around, I am talking about being who we are and letting others be as well. I believe the result of that will in our case be a cleansing, a new beginning, a realigning of clarity in our lives that will then allow the people who align closest to us to be close to us and we can all support each other. What a beautiful thing. And equally beautiful, the people who have fallen away from our lives, they in turn have an opportunity for clarity and realignment. My hope for them would be the same: that the space they have created by choosing not to associate with us or support us would open a space for something wonderful in their lives.
You see, we didn’t start this not to finish it. We didn’t plan to recover our child from autism. We didn’t plan on autism at all. None of us do. We put off for so many years believing we were dealing with autism. We didn’t ask for this. It wasn’t part of our daydreams about having a child.
But guess what? We are the parents of a special needs child. Our child does have a really unique set of needs that we have chosen to tackle in a really different and effective way. It’s not for everyone, this road we are on. But I’ll tell you this: We are deeply grateful to have Emma. She is one of the greatest gifts of our lives. We will fight for her and give her the best possible chance for full complete recovery. This determination is not based on whether or not a given group of people believe in us, or what we are doing. Our belief comes from careful research, consulting with top doctors and experts, and most of all observations of Emma’s extraordinary response to our program.
So, to those who support us: thank you thank you thank you! To those who do not: we wish only the best for you. That you would find your passion, the people or things you most want to support and fill your life with. If you just want to wish the best for Emma, even if you don’t support her program or the way we are doing things…. Go to her site, or facebook page and click like, make a donation if you feel moved to, share this on your walls, email your friends links. Call us and ask us to play. Either way, we wish you only the very best: That your journey would be filled with those who love and support you, and that you would find your bliss.
We’ve found ours. It’s in the eyes and the heart and the soul of one very special little girl named Emma Jean, fighting her way back to us, and back to health. We’ll stand by her always, even if it means standing alone.
It was crunch time this week. I leave for New Frontiers in 4 weeks. I am so excited to go and complete the third training course for parents running Son-Rise Programs at the Autism Treatment Center of America in Sheffield, Massachusetts. We still have a small balance due for this course, due now, and quite frankly didn't know how we were going to pay it. Now, as you can imagine, this is not the first time in the past 7 years this has happened. We've sold cars, liquidated savings accounts, some retirement accounts, and generally lived on faith a lot. We have learned so much about trusting in the past 7 years. Things happen for a reason, and things that are meant to happen, will. So, this morning we were having our all too familiar conversation about how to make this last payment happen, and if we could. It wasn't looking good. So, as we often do at such an impasse, we went into financial crisis mode: what bills could we not pay? Which supplements/medications could Emma do without, so we could get me to New Frontiers? There weren't any easy answers.
Later in the morning, Chris informed me we had, in the last 24 hours, received donations totaling just the amount we need to pay for New Frontiers! How amazing! We are so deeply grateful for all who donated. Please know you have answered a prayer! When I return from New Frontiers around Thanksgiving, I will be sure to let you all know some of the things I have learned and how it will help Emma!
Well, a little over week has gone by since I last wrote. It's been an exciting one, and I wanted to share with you what has been going on! Well, we launched a Facebook Page, and in just a week, we have over 200 people who are fans of Emma's Dreams. It is so exciting, and so incredibly touching and helpful to know all those poeple are out here rooting for our girl!
I have to say, this past week has been a great one for Emma. She has done some amazing things that are so exciting to us. Emma has had a real break through with her eye contact. Eye contact, for those who may not know, is one's ability to connect with others by looking into their eyes when speaking and or requesting something. With most children with Autism, their ability to make eye contact is greatly impaired. This has definitely been a great challenge for Emma. She has always, in some circumstances, been able to give a small glance in the direction of a very familiar person. Occasionally she could do a little more. But when we really looked at what she was doing, we realized she hardly ever made eye contact. She was solidly in stage 1 of the 5 stage Son-Rise Developmental Model ™. So her goals have been for the past three months to make any eye contct at all when requesting or greeting people.
So last week, Emma invited her next worker to come on shift and myself to join her and her current worker in her playroom. They had made a "movie" using pictures on the wall. We were the audience and we sat quietly while Emma told the "Holloween Tale". Half way through I was crying tears of joy: Emma was performing the movie, and making sustained eye contact as she was speaking with ALL THREE OF US, checking back and forth just as any of us would do if we were speaking to three people. It was so natural and so amazing, and such a huge leap forward for Emma! She did this consistently for at least 4-5 minutes! The rest of the week was peppered with comments like," I couldn't believe it.. Emma turned all the way around and looked at me to tell me she needed to use the bathroom.... and she kept looking at me the whole time she was talking"! This is such a big milestone for her, because eye contact is the window to connection with others.
Thank you to everyone who is supporting Emma wth your donations, time, thoughts and prayers!
Well, it's finally here! Emma's Dreams is up and running, and it has been quite a journey to get here. It takes time to learn the ways of the web, figure out what exactly you want to tell people, and how you want to tell them. Then you actually have to get up the nerve to press the publish button... To put our life and our dreams out there. Well, here they are! Our passion, our dreams, our life's work so far. We are excited to share with you this journey we've been on, and we'll keep you updated every few weeks or so as to what's happening in Emma's program and with Emma's progress.
We are deeply grateful to all those who have supported us in many ways so far. Your donations, prayers and just plain believing in our dreams and our daughter and her ability to heal, have made such a difference in our lives. Thank you. To those special people who have helped me get this site up and running...Thank you. To my sister in law Michelle: Thank you for the amazing pictures which fill these pages.... they were my dream for this site and you made that dream come true. If you want to see some more amazing photography go to Michelle's Facebook page: Michelle Perry Photography
To "Bears" Barry Neil Kaufman, and Samahria Lyte Kaufman, Co founders of The Option Institute and The Autism Treatment Center of America: What can I say? Thank you hardly seems enough. But thank you, for believing in your son, and ACTING on that belief, and opening up your world to all of us who dare to believe in our children and ourselves. My life, and that of my husband and daughter yet to even be concieved at the time, were changed forever the day I first came to The Option Institute and the Autism Treament Center of America. We will forever be grateful.
To any and all who read this site, and even stop for a second and offer a positive thought or prayer, donate , or volunteer your time for our Emma, we thank you from the depth of our souls.
Ellen is a counselor, educator and Biomedical and Son-Rise mom extraordinaire. She has many years of experience in public, private, "typical " and special needs educational settings, as well as extensive training as an Option Process® Mentor Counselor through The Option Institute in Sheffield, Massachusetts, sister organization of the Autism Treatment Center of America
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