Conversing With Emma

I asked Emma if I could write about a conversation she had with Soma last week.  She told me I could.

Emma told Soma she wanted to open a day care center.  When Soma asked her what she’d call it, Emma wrote, “Emma’s Hope Care.”  Soma then asked what the philosophy of the center would be and Emma wrote, “No Autistic child left behind.”  And then a little later Emma wrote, “early education” and “no behavior management.”  Soma asked Emma where this center would be located, Emma wrote that she intended to have several, but that the headquarters would be in Chicago.  I smiled when she wrote that as my brother and his wife live nearby as does our friend Ibby, or as Emma calls her, “Ibby from Ibbia”.  Emma also said there would be a center in New York.

This was an easy back and forth conversation, with Soma giving her thoughts about things then asking Emma for her thoughts or Emma volunteering her opinion without being asked. Emma pointed to letters on a laminated alphabet board while Soma spoke, and on it went.  It was an example of something most speaking people take for granted.  We do not think twice about exchanging an idea with another, asking questions about things we don’t understand, listening to the other person, formulating an opinion, discussing, perhaps disagreeing, but in the end each person coming away with more information than they had before entering into the conversation.

I was fascinated to hear that my daughter knew about the “no child left behind” bill, passed by the United States Senate in June of 2001 and signed into law in January, 2002.  I also wondered if her comment, “No Autistic child left behind”,  was said with a touch of irony and humor, perhaps even sarcasm, as the current situation in so many special education schools in New York City, both public and private, are leaving a great many Autistic children behind.  In fact children, like my daughter, are regularly put into classrooms where a high school diploma is not a given, much less a goal.  Not only has Emma told me she wants to get a high school diploma, but she intends to go to college as well.

But what I loved most about what Emma wrote was her obvious compassion for others and her desire to do good.  Last fall she wrote about wanting to visit “old people” and then added, or “people in a cancer hospital.”  Funny how when you listen and watch what Autistic people are saying and doing, it is not in keeping with what so many non autistic “professionals” are saying about them.

A completely unrelated photograph of Emma holding Teddy.

Emma holding Teddy

Emma holding Teddy

27 responses to “Conversing With Emma

  1. Wonderful, so full of compassion for others. I want to be the first to invest in her new Day Care Center: Emmas Hope Center. I am already standing in line to visit it (with tears in my eyes) and ready to talk with and hug anyone who is up to hugging, spiritually if not actually….

  2. My daughter is almost 3 and was just diagnosed with ASD. Emma is such an inspiration to me, to see what my daughter can become and to see that the limits people say are there actually aren’t! Emma, I was wondering what advise you could give to me as a mother of a special girl with ASD?

    • Lauren, it took Emma about ten minutes to answer you. This is what she wrote – “You sound like you are a nice, loving Mom. Be tender with yourself and your daughter.”

      • Emma, thank you so much for putting in the time to reply to me! I look forward everyday to hearing from you. Thank you, also, Ariane for sharing your journey.

  3. If I wasn’t so busy id look it up for myself…but at what age is rpm/typing recommended…I think e is too young at 4 but we’ve started helping him learn to spell things. For now its AAC and we worked hard to get that but as he gets older Henry’s words about those being limiting are bouncing around in the back of my mind

    • Yes, I believe Soma does not see children who are younger than seven.

      • That makes sense since most young children can’t spell…tho he can spell some things already if wound down enough…needs support though

        • Actually it isn’t because of spelling, in fact a great many children can spell at far younger ages than seven. According to the Halo Center web site ` http://www.halo-soma.org/learning_faqs.php?sess_id=96e22e44656f400f95ccd9df36db4721#q13 – it is because of the intensity of the work.

          “Because of the intensity of the sessions, HALO’s students are a minimum seven years of age before scheduling an RPM appointment with Soma.
          In the meantime, parents should begin work at home. “Natural environment” RPM should begin at birth as parents talk, explain, read and sing to children.
          Soma explains that when Tito was very young, she talked to him incessantly. (For example: “I see it’s 12 o’clock, do you think we should now have lunch or breakfast? Yes, at noon we have lunch, and what shall we cook?….I think potatoes, let’s get them, and where do we keep them? Yes, in the pantry, and now we’ll pick them up and take them to be peeled….How would you describe potatoes? Do you think they are round and smooth or flat and sharp? Now let’s sort the potatoes from the onions, and then we’ll count by pointing”…..etc.) She constantly described and explained and posed questions to cause Tito to use reasoning and to make choices.

          For young kids, Soma recommends offering written choices for age-appropriate material (for 2-3-year-olds, that would mean teaching nursery rhymes, alphabet, numbers 1-10, colors, shapes, etc.). For example: “Would you say ‘Twinkle, twinkle little S-T-A-R star, or B-A-L-L, ball? Point to the answer.” Most kids are not reading at the age of 2-3, but they learn HOW to choose and WHAT to choose, and the exposure to written and spoken letters and words will help accelerate their ability to read and write.”

          • Ah thanks…idk if we’ll ever be able to do official rpm…I’ll have to investigate where closest person is…if I remember correctly where she’s located soma might actually be the closest. At his age really just trying to lay framework…we’ve seen already that some things he takes to some not, but even continuing AAC it has a type to speech keyboard we can work with as well. So exciting to read about kids ahead of him…because it helps me have a direction and a hope for the future. Not expecting him to be the next Emma or Henry bc he’s ethan but good to see where he could be in a few yrs. I’m not really that lazy just he has ipad mostly and older son needed laptop bc of handwriting prob so reduced to my phone thats slow as crap lol

          • Yay I did remember correctly…Texas is next door to us though I’m in further corner from it but still less than a day drive

    • We started with my son when he was four and a half. You don’t have to be able to spell. My son has not given any indication that he can really spell yet. Right now he sees a person who was trained by Soma. He goes once a week for 20 minutes. Usually she does half hour sessions, but that was too long for him, so we cut it down to 20. I aim to do four sessions a week with him at home…usually I do somewhere between 4-7 questions with him. He chooses his answer from choices I have written out. He is learning to spell out words on a letter board, and I usually have him spell 1-2 of the words he has chosen for his answers. This is where we are at 6 months after we started. So, you certainly could start with your son. Just bear in mind what we expect from other four year olds. How long do we expect them to sit and attend during a lesson that is intense?

      • Agreed then the additional problem that he works so hard at school i dont do much formal stuff at home…just let him be himself. But always looking for stuff to sneak in. Going to work more on spelling words…his SLP at school is too bc she noticed his interest in it. Could you elaborate a bit more on what you do at home…super busy right now but trying to get an idea bc freelance job will be done soon…i hope

      • Just curious since he is much closer in age what is expected and used w younger kids that can be worked on at home

  4. What a compassionate heart Emma has! She will go on to do great things, I’m sure. She is inspiring so many already! What an amazing young lady!

  5. I am soo amazing and impressed by Emma, and by her friend Henry.. Their stories have truly touched my heart.. I know many people who are autistic and I truly learn alot from them. I have shared the stories with my 11 year old daughter so she is able to learn compassion, as well as able to learn from their inspiring stories.. THANK you for sharing them both with the world..

    • Thanks for reaching out Merridy. I hope you won’t think I’m being too forward by gently suggesting that your daughter most likely already does feel compassion. Most human beings do, without being taught, at least this is my belief…

      • Ariane,

        Thank you for that point out.. Sometimes my mind does not complete sentances.. My Daughter does have compassion.. But sometimes in her 11 year old mind she gets the POOR ME’s and I think reading about Emma and How strong she is has helped my daughter see that hings are not that bad and gave her the boost to be stronger.. Does that make sense? or did I just make a mess of things?

  6. I am not at all surprised that Emma is expressing her compassion. It is so visible in all your/her posts here. I may not be in a cancer hospital but I would very much welcome the opportunity to have a visit with you, Emma, just to hang out without having to speak.

    I have no doubt whatsoever that Emma will achieve pretty much anything she sets out to do, with your evident love and support, Ariane and Richard. x

  7. Hello Emma,

    I love reading your blog. I find you to be an articulate, insightful and compassionate young lady. I always learn something new when I read your posts which usually leads to me having more questions. I wonder if it would be alright if you would answer one of my questions??? If yes then please read on….If no, then I thank you for your blog and I will continue to enjoy reading it.

    In your post about wanting to open ‘Emma’s Hope Care’ you write that there would be ‘no behavior management’. So my question is,
    ‘What would you do to help children cope with their feelings in our society?

    Thank you for your time.

    Sincerely

    Kylie Courtney-Wylie

  8. so beautiful Emma 🙂 Huge things this girl is going to accomplish 🙂

  9. “No Autistic child left behind” Love it! Emma you’re going to do great things with your life NEVER EVER let anybody tell you can’t do something because you have a different neurology I BELIEVE in you.

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