HELP EMMA'S DREAM'S COME TRUE
Today is a big day in the Stanley household: The beginning of the end. The big let go. Farewell dear friends. Emma reorganized her Barbie kingdom and decided to sell about 30 dolls. When she told me.. I almost cried. You see, Barbies aren't just playthings in our house. They are part of Emma's autism... they are one of her “Isms” or repetitive behaviors. She has probably 80 or so Barbies, and tons of accessories, campers, plain ones fancy ones you name it, she's got it.
These Barbies have seen a lot of action in their day, and a lot of changes in Emma. I remember the days of strictly controlled play: Hours of Emma saying,”Mama, put the Barbie over there and have her say 'Mama I need dinner' ”. This would go on for hours, with the strictest control of play by Emma. The mere THOUGHT of parting with even one would lead to meltdown of epic proportions. Man, She's come a long way baby.... now she and her playmates play together with complete freedom to invent and chose what each will do with their characters! AND SHE IS READY TO LET SOME OF THE BARBIES GO GO!!!! I am so proud of her, and at the same time, it's like saying good-bye to a good friend. Friend you say? Yes friend.
One of the most valuable things I learned to do in Emma's program was to LOVE WHAT IS. I can passionately want something more or different, but I love what is right now. And yes, that can include poop smearing, masturbating and other “offensive: behaviors”. I love Emma's Barbies. I loved playing with them. I loved being ordered around. I loved every word she said to me and every moment she included me in play. Aren't Barbies wonderful? I think so.
In loving Emma's isms, I get the honor of really knowing my child, meeting her exactly where she is and seeing what she values, seeing how she is taking care of herself, in the best way she knows how. In addition, I get to experience and enjoy her childhood. I don't see this as much in other methods for treating autism. I love embracing Emma's isms, and I love watching her let go.
Barbies for sale.............
I wrote this blog a few weeks ago, but for some reason, I couldn't upload it to Facebook. This week has shown me why that might have been. This week I watched my daughter almost get hit by a car. She is fine, not a scratch, but the call was close enough. Today, another brush with possible death. We bought some organic, all natural lip balm. I read the label TWICE. Emma put some on her lips... and my Mommy gut screamed," CHECK AGAIN"!!!! Indeed, there hidden in plain sight was Lecithin, a form of egg. Immediately I pulled over, gabbed the nearest cloth, and wiped her lips like there was no tomorrow. We were only a block from home, and we went and vinagered her lips. She has a strong, serious egg allergy that could kill her. Sigh, All's well that ends well, but it got me thinking about this blog I never posted. If something had happened, would I regret all that I have done for Emma, all that I have sacrificed? I know I wouldn't. Ever. regret. this. journey. EVER. SO read on, and see why I give Emma's recovery "All" of me.
I drove an hour one way yesterday to deliver some papers to a doctor we are seeing on Friday… I had to drive it up because I had made some cool graphs and charts of Emma’s progress over the past three years in the Son-Rise program, and they were color coded so they couldn’t be faxed. Yeah, I know, there was probably some cool way to scan and email them, but I didn’t know how.
Yeah, that is pretty much me. Color coded, spiffy graph….. ALL OF ME. That’s what I give Emma. All of me. Now, that doesn’t mean that’s ALL of me, I have lots of parts of me that don’t do graphs, would rather forget healthy food , biomedical treatments, food allergies, and the whole Autism thing. I do things for myself, and have pieces of my life that aren’t related to Emma. I find that balancing and healthy. But when I do something for Emma in assisting with her recovery, I give it all of me, and I love that.
All of me means I don’t stop at half way. I look where I “don’t want” to. I face my fears, my anger, my joys. I celebrate Emma’s triumphs…. her milestones in her recovery. I let go…. Again and again and again. There is no scared ground. There is no where I will not go, nothing I would not do, if I felt it beneficial for Emma. I’ll go without. I’ll face any criticism. I’ll be as different as I feel I want to be. I'll stand alone.
I love her completely, fully, without limits. I love her with ALL OF ME, I don’t let my fear hold me back for the most amazing relationship EVER with my little girl. I don’t need to know the outcome of our story… the end is not nearly so important to me as the journey.
It isn’t always easy, and often, very often I chose to feel lonely in this journey. But that’s just another opportunity… to grow and to change.
I love my life. Even the parts I would change if I could.
Giving Emma my ALL is my honor. I am grateful everyday for her.
Jumping Over the Puddle
The last three or four weeks have been rough. The whirlwind that summer is here in Maine, and some fun and antics with our neighbors here in the condo complex: people moving out and moving in, and other things that happen sometimes as a part of life. Emma hasn’t exactly dealt well. We had a few monster of all meltdowns, sleeping troubles and general bad attitudes that I chose to let drive me crazy.
In the end however, it was just a good case of Jumping over the puddle. What’s that you ask? Do you remember, when you were little and out stomping around in the rain, or after a rainstorm and you find a great big puddle to jump over? You back up to get a good running start, and you leap over the puddle and soar through the air…. So fun!
This happens with kids on the spectrum. They "back up" and then take a leap forward. The only problem is I don't always see that that is what is happening…. until she soars over the puddle.
That’s just what happened this past weekend at the Fall Regional Taekwondo tournament in Cape Cod, MA… thus the sobbing mother beside ring # 2! Emma has been doing a great job with these tournaments, with a fair amount of support from me, but this tournament was different. From the beginning, Emma wanted to be on her own. She wanted to walk by herself to see the vendor tables. She wanted to hang out with her Taekwondo school mate… alone. This is good. Previously she has been my Velcro child. Something was up…. I was beginning to smell a puddle ahead.
Well, what happened when she competed was nothing short of amazing. The students lined up and are lead to their ring by one of the judges. When they got to the ring, a young, smiley judge bent down and started talking to the girls in the ring.. rapid firing questions: “What your name? How old are you? Are you going to make some friends today?” Well. To my delight, Emma jumped right in, looked the women right in the eyes, and answered her questions, one after another, like any other kid!!! She competed with flare, and then, when receiving her trophies, she shook hands and MADE EYE CONTACT with each of the 4 judges in her ring. Fantastic! So connected, so there, so natural, so comfortable. So typical… so like every other girl in her ring!!
No one there knew we have had eye contact goals for her for the past ummmm, 7 years. No one knew how hard she and we have worked. No one knew what we have been through to get to these moments. I lost it. Tears of joy streamed down my face. A woman asked me if I was ok, and I just said I was so, so proud of my girl.
I knew in that instant she was jumping over the puddle… and boy, was she jumping high and far.
Many thanks to all who have and continue to support Emma and her dreams.... I wish each of you could have been there to see her soar... you are the wind beneath her ( and our) wings, and we will always be deeply grateful.
Way to go Emma, Way to go!
I had another amazing adventure at the Autism Treatment Center of America last week. I spent the week in the company of about thirty of the most amazing parents I have ever met, and learned so ,so, much!
I learned that taking Emma’s learning to the next level can actually be more fun for her and I , and not so much like adding a “ have to” onto to her fun activity.
I learned (again) that “good” is the death of “great”.
I learned that making daily tasks fun doesn’t have to be more work, it can actually be less.
I learned that letting go means being fine, even great with everything thing that could happen. And I do mean everything.
I learned that building, requesting an initiating are three different bears, and how to extremely effectively do all three in the playroom.
I learned how to effectively use green lights to move Emma’s learning to the next level.
I was given tons of resources for building games and activities build especially for Emma, to address her particular challenges, and how to help others do that as well.
I gained strength to continue this journey, for myself and for Emma.
I gained the knowledge that contact with specific people can help me, and others I will avoid at all costs.
I learned that I am only alone in this journey if I chose to see it that way, that there are two groups of amazing parents out there rooting for me and cheering me on. These parents love Chris, Emma and I and understand the challenges we face.
I learned that each day is another opportunity to love what is happening, stay present and enjoy the ride.
Weeeeeee! Both hands up as I ride this rollercoaster!
A big heartfelt thank you to all who helped me get to New Frontiers….. Another life changing week…. Another opportunity to help Emma!
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, 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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