Last Monday Emma was profiled in A Slice of Life Series that the blog Thinking Person’s Guide to Autism has been running through the month of April. This is the blog I wish had been around when Emma was first diagnosed, but that I am so grateful exists NOW, because it is by and for Autists and those who care for them. Almost all the comments were from Autists who have blogs of their own and I recognized almost every single one of their names. One of the people who reached out, Savannah, has a terrific blog called, Cracked Mirror in Shalott. After she commented on this blog, I went to hers and read a powerful post, entitled Payment about teaching life skills to young Autistics. The first sentence of her post is: “I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.”
I will do her writing a disservice by trying to relate it here, so I urge anyone reading this to go to the link I’ve provided. I commented on her post and inquired if it would be okay to ask for any thoughts on how to help Emma learn to wash and rinse her hair, which we’ve been working on for close to a year now, with on-again-off-again success. In reply I received not only a lovely and thoughtful response from Savannah, but another from someone else, who had some terrific suggestions and also has a blog, Chavisory. As I pondered the various responses I began to formulate a fantasy. A fantasy of what I would love to see, what I hope I will live long enough to see, a vision of a different sort of world. A world in which adult Autists were mentoring and helping younger Autists. A world where adult Autists were involved in every aspect of society, education, government, policy. I imagined a world where Autistic writers had columns in every major newszine, newspaper and magazine. A world in which every single school had Autists teaching, devising curriculum, training and teaching neurotypicals how to best teach children on the spectrum and as I allowed this fantasy to develop I felt a surge of energy and excitement. I literally felt like jumping up and down. When Richard appeared, bleary-eyed and slowly reached for his cereal bowl, unable to contain my excitement any longer, I blurted out, “Can I tell you about my dream?”
“Can you tell me?” Richard asked, with a dazed expression.
“Yes. Can I tell you?” Unable to hold back any longer I launched into my fantasy, while Richard was still forming the words – “Yes, of course. Tell me.”
“Can you imagine what it would be like if adult Autists were writing books, teaching us, training us parents how we could best help our Autistic kids? Can you imagine how amazing that would be? Can you imagine how helpful that would be? Autists have insights that we can’t possibly have, they understand better than anyone the various sensory issues, delays in motor skills that might be making it harder for children like Emma to learn how to do some of these things. Can you imagine? Can you imagine a world where schools were created and run for and by Autistics?”
And before Richard could reply I kept going. I was on a roll. The excitement I felt just thinking about all of this was so great I couldn’t sit down.
“Think about it. It would be so amazing, unlike anything we’ve ever experienced.”
As I considered this fantasy world I felt the stirrings of determination. Why does this have to remain a fantasy? Why can’t this be a reality? What would have to happen for this to go from far-fetched fantasy to reality? I’m sure others have had this thought. What would need to happen? What are the next steps? I bet others have begun to make this a reality and if so, I’d love to know about them.
Thoughts?
For my latest piece in the Huffington Post – Running With Mermaids
To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
Emma's Hope Book 
I think that’s part of the thought behind loud hands project. have you heard of it yet?
Yes, I actually donated to it. But it seemed that was more about educating the public to counter the “Quiet hands” thinking in schools. Is it reaching beyond that? Is there any other way to help, other than donating money?
Wow. Of course. Parents and their child being mentored by autists. A school. Writing by autists getting into the mainstream.
Mentoring is key. I run the mentoring program at Juilliard. Please put me on your list to help.
Barli, I didn’t know you did that. Yes, I have to figure this out, because it’s key that Autists be the ones organizing and running this and I’m sure some already have begun to, I just don’t know about it. But I’m going to try to find out.
“My mind is aglow with whirling, transient nodes of thought careening through a cosmic vapor of invention.” Hedley Lamarr, Blazing Saddles
Like-minded sisters! I woke up yesterday morning with a thought very similar to yours and despite my many attempts to put it all done on paper, not a word of it is coherent!
At the moment, and until I can once again write in meaningful sentences, just know I am with you and you can count on me and my energy to assist anyway I can.
ps. Can I repost this post on my blog?
Yes repost away! I’ll bet Autists have started something already, but I just don’t know of it. When I find anything I’ll let you know!
Thanks! Done!
I love where you are all going with this! I will be very tempted to move if you get one going!! :O)
I’d want you to move anyway!
I am so happy you are thinking autist mentoring would be of value. I have felt this ways for so long, but, being autistic, find it challenging to join in. I see how hard it is for non- autistics to understand the autistic experience. I am learning how to add my voice to the conversation. Recently, I spoke at a university , to students studying autism. It was rewarding, and I was well received. Here is a link to a post article about me and my husband. As I has said before, Emma is so very much like me as a child! http://www.washingtonpost.com/lifestyle/magazine/for-bandleader-doc-scantlin-and-wife-chou-chou-a-life-inspired-by-the-1930s/2011/12/14/gIQA26EIwP_story.html
Hi Chou Chou! Thank you so much for the link, what a wonderful article and I loved reading all the supportive and glowing comments from all your fans!! Clearly you and Doc’s performances have given people wonderful memories. What a terrific gift.
I love that you spoke before University students. If you ever speak in the NYC area, do let me know, as I would love to hear you as well.
Do you have any recommendations for us as to how we might further Emma’s interest and love of music? As it is now, she really isn’t verbal enough to have lessons, whether singing or instrumental, we did try bringing someone in to teach her the piano, but it was clear within the first five minutes that she wasn’t able to stay with it, he used too much language and I think it overwhelmed her. Emma loves to listen to music and will often sing to songs (though garbled), her current favorites are Michael Jackson and Dionne Warwick, but I wonder if she’d like singing lessons, even though her language is very, very delayed. I’d love your thoughts.
Thank you so very much, Ariane, for your sweet response. I remember that being taught was much too overwhelming and stressful for me, and I was a total faliure at piano, and most other structured lessons. What did work was when I was encouraged to find my own way, with no comparisons or expectations. My mother always told me I could do anything, and what a wonderful woman I would be one day. She found it best to give me materials like costumes, art supplies, records, and even the old movies on TV, and let me process it on my own. She would then encourage me to share by singing or dance or doing an art exhibit of some kind, whenever we had visitors. Saying grace at the table, singing for family at special occasion, and dressing up and acting like different characters, was something special and fun I was able to give! Memorizing small scripts or poems was much easier than making conversation, so it was my special appointment in our family for me to say grace at meals, sing on Chrismas eve and birthdays, and put on little shows on a regular basis. There was no right or wrong in how I did it, and I was left alone to practic and rehearse. A mirror and a large blackboard, and a large box of costume pieces, and not being told how to do it made me bloom. Instructions were, in my mind, the same as being reprimanded, that is, it only reminded me I was not okay, not right, and that I could only be accepted if I did things the way others did. It made me feel damaged, bad, because I couldn’t do it their way. By focusing on the joy of performing, which Emma clearly has, instead of the rights and wrongs, I learned this was a way I could make people happy. It was a way I could connect socially. By the time I was high school age, being a performer and artist was deeply ingrained as my self-identity, and I continued to grow, star in school plays, win awards, and even seek out training. I have an odd, untrained singing voice, but have earned my living for many years this way, performing worldwide. It has been a blast! My strength is that I am able to connect with an audience and give them a feeling of…bliss, the same bliss as I had as a child, performing, and connecting to others through performance. I thank my mother for the encouragement I got as a child, and the unconditional acceptance of doing it my own way.
I hope this was not too lengthy a response. I will certainly let you know if I ever speak or am performing in NY. Keep your wonderful blog going! You, your family, and beautiful Emma, are bright lights, indeed ❤
I love, love, love this response. Thank you so much for taking the time to write it. I showed it to my husband, who also thanks you. It gave us some good ideas of how we can encourage her. Your thoughts about lessons and your own experience has mirrored what we have seen and thought. We also have a costume box, Emma loves dressing up and we have encouraged this. She also loves to perform when we have dinner parties and begins with, “Ladies and Gentleman! Welcome to the show!” usually she does not want to stop and can go on for as long as she is allowed.
I am going to purchase a full length mirror for her. Thank you again. So wonderful.
If the timing of her show gets too long, you may want to play the role of her “stage hand”, explaining that all great shows have a beginning, middle, and end. You could wave a yellow flag to let her know it is time for the middle of her show, and wave a red flag to show it is time to go into the grand finale. The reward for getting to the end successfully would be lots of bows and applause, and maybe a presentation of a “bouquet of flowers”, that is used of over and over. My bouquet when I was small was of tissue paper, and I had made it myself. XO!
if it wasn’t started already . . . i think you’ve just started it 🙂 Thank you so much for sharing, i’ve learned so much from your blog, and the others you mention.
if it wasn’t started already . . . i think you’ve just started it 🙂 Thank you so much for sharing, i’ve learned so much from your blog, and the others you mention.
I also tried to get music lessons started for Zack. Haven’t found a music teacher of any sort on Zack’s wavelength yet!
Thanks so much Carol. Yes finding someone who doesn’t rely on language to teach is really tough.
have discovered its not just the reliance on language, its just as much finding someone who is open minded enough to work with his strengths and not focus on his weaknesses. Some just can’t work with anything outside of the ‘normal’ range. My feeling, if normal = average, who aspires to be average? I’d rather aspire to Extrordinary 🙂
“My feeling, if normal = average, who aspires to be average? I’d rather aspire to Extraordinary”
Oh that’s lovely, Carol! Yes. It’s not just about language.
Temple Grandin has started a school for 6-12, and it focuses on encouraging the students strengths as opposed to trying to always correct their “weaknesses”. Its in Colorodo, and I already told DH that we are totally moving in 7 yrs when DS will be in 6th grade. Also, Carly Fleishman, who has already co-authored a book “Carly’s voice” with her Dad has some great ideas about education (see her FB page she is amazing!) If you haven’t yet heard of her she cannot speak – she types, and she is an extremely intelligent and funny young woman. http://www.templegrandinschool.org/
We are still in the beginning of our journey and struggling , but one day when I come up for air, I would love to be involved too 🙂
Oh my gosh, Shiri, I hadn’t heard about Temple Grandin’s school. How wonderful! Thank you so much for sending me this link. I will look at it.
I do know about Carly. What an amazing young woman. I haven’t purchased her book, but am going to after I finish replying to you.
Chou Chou, I love the bouquet idea and the colored flags! Thank you, thank you. Please, I hope you’ll feel welcome to send me any and all your ideas and thoughts whenever they may come to you. I would never have thought of the bouquet and I know she would love it. You have given me such wonderful ideas and I just cannot thank you enough. I reread the article about you that you sent. It is beautiful, as are you. I am thrilled to be in touch. By the way, we are the same age. I turn 52 this August!
You are lovely, Ariane 🙂 Thank you for making me feel so welcomed. As I said, I am just starting to connect to the autistic community, and I really have to push myself to do so! I am so happy you received me in a positive way. If you ever want to contact me personally, you can email me at chouchou@ docscantlin.com I would be happy to hear from you, and I will continue to follow and comment on your blog. Thank you for sharing you lovely heart with all of us! ❤
Oops. I meant chouchou@docscantlin.com
Wonderful! I will be in touch. Thanks for sending this to me.
Hi Ariane – I’ve had this open to “comment on” all week, and am finally getting through my many tabs. This is so wonderful. 🙂 And maybe one day, it will come true. 🙂
Also, (related to the comments) I benefited greatly from piano lessons… and I had the most *amazing* piano teacher. I will be writing about her and all of her amazing-ness and the good she did for me, growing up, but lets just say she taught me to speak, think, and communicate with music. Sometimes its just the right person, with the right approach. My piano teacher was gentle, kind, *extremely* patient, and she really didn’t use many words. I think piano was a good instrument for me, because I didn’t have to use breath control (wind instruments) or control two hands doing totally different things (strings – though I did learn violin, viola, and later cello). Anyhow, just wanted to let you know that. 🙂 It might not be the instrument but the person. Of course now I’m perseverating on pianos instead of the topic at hand, but I will also add that an electric piano which can have the volume adjusted might be a good thing to play around with. I LOVE a real piano, but who knows… plus with an electric piano, you can change around the “voices” and make silly sounds, which is always fun. ok, ramble over…
I so love your comments, E. Thank you for writing about your experience with instruments and music. I can’t wait to read your post about your piano teacher. Amazing how teachers, mentors, or even just kind adults in our childhood can have such an enormous impact.
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