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!
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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