“Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home. She wrote it in answer to Soma’s question, “Any message to the world? To mankind?”
Be nice to each other.
We returned home late Friday night. I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself. She is one brilliant girl. She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years. She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing. She has been spoken harshly about. She has heard what others have said about her in front of her as though she could not hear or understand. She knows what others think of her, and yet, she understands these things are said in ignorance.
So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness. I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed. My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe. I spent Saturday in a state of crisis. I completely broke down. And the thought that continued to blast in my mind was, “How will I ever find my way out? How can I forgive myself for what I’ve done? How does one forgive another who has made the decisions I’ve made? In essence, how can you forgive what is unforgivable? And yet, she has. And therefore, so must I.
Be nice to each other.
And here is the thing about all of this. Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle. It wears me down, threatens to break me when I need to be strong. But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away. Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them. Criticizing myself for hating myself does not make me hate any less. And so I accepted that this was where I was. And for one day I sat with all those awful, painful feelings and felt them. Neither pushing them away or adding to them by criticizing myself for having them. I sat with them one excruciating hour after the next and allowed them to be. And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself. By Sunday morning I felt my strength returning. I felt that old determination returning. I could feel energy flowing and I knew. I knew. As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.
When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled. Last night before going to sleep she said, “Mommy? No school tomorrow? I don’t like new school.” And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me. And I need every ounce of strength I’ve got in me. But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have. Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen. This is the non autistic limitation of our neurology. This is our neurological deficit and we will have to work mightily to change that.
Emma at Halo – September 26th, 2013
Yes. Strength to you both. The more evidence you (and we all) have of our Autistic children/friends’ competence, the harder it will be for skeptics to deny them the opportunities to flourish to their full potential. Blessings to you and Emma, and good luck with the school!
Thank you Andrew… not sure what our next step is, other than to continue emailing and leaving voice messages for various people at her school and hope that at some point they will respond.
wondering what would happen at emma’s school if soma came to work with emma there for all to see
THAT would be ideal! But short of figuring out how to come up with the money to pay for her to come, not sure how that will happen
maybe through the school people watching a video of soma working with em
This is what I’m hoping to do. So far no one has returned my emails and calls. I know everyone is busy… I will keep persisting.
oh…I get it. I so get it. Daily battle for me too. I know it is not for everyone, but don’t rule out homeschooling. It is an option, especially if what you are doing on your own and with others is working. It doesn’t have to be forever. And you CAN do it.
Not only have we not ruled it out, but we are thinking about it… a great deal…
It is a big decision, but…I am type-A, impatient, and hard on myself. Still I manage to do it and she is doing well. There is a great support network through FB and other venues. Check out https://www.facebook.com/groups/180010098690511/
Thank you for the link. I have joined, though I haven’t had time to spend any time looking around. But I really appreciate the link.
What matters is that you know NOW and you are open to what Emma has to teach. Many parents, of neurotypical children or not, do not “get” their child or support their gifts. Emma loves you more than anything and is grateful for the investment you’ve put in her livelihood. She wants you to forgive yourself! So listen.
*from Jackie. It made me login to a random WordPress.
But how perfect for you Jackie, aka “cinelust” !! 🙂
Yes, exactly. 🙂
Still my hero, now and always. XXXXOOOO
Believing in Emma and yourself is your best source of strength when you are feeling low. It is a journey we all are on, parents of children (grown like my daughter and younger, like your daughter) who are trying to help our children and ourselves sort through this learning experience. But one thing I have learned is to never doubt that you are trying your best, as is your child. And to continue to learn, as that is what life is all about.
Yup. One hell of a journey… whew!
Our paths move along parallel lines, don’t they….I know longer give advice. I pass along information. It isn’t semantics. This path you have entered is one I began with Emma almost 3 years ago. You met Emma somewhere in the beginning of it. Remember…Emma asked you to tell adults to not talk in front of people like her.
It is so hard to remember the wisdom of my daughter comes from a young women with less years than I have lived.
Be gentle with yourself my friend…..your daughter needs you
Oh Paige… I think of you often and yes, I do remember, I so do remember when your Emma said that to me.
I watched the first recordings of Emma’s sessions with Soma yesterday. I’ll watch the rest of them today. What I witnessed was so astounding, and yet so puzzling. How is it possible that she can spell out her thoughts so articulately, and yet her speech is halting, constantly hijacked by compulsive loops and random memories? Fortunately, as Ariane says in her post, we now have the proof and it is indisputable.
Emma rarely makes an error in spelling, even with words she has never spoken, words that we couldn’t previously even imagine her speaking. She can do multiplication and division in her head that she has never been taught. Yet when she speaks she sounds like a very young child or a person with a compulsive speech disorder.
When we were out in the park yesterday I was struck by how her speech doesn’t reflect her intelligence. That in itself is not a tragedy, now that we have the ability to help her communicate through spelling (both typing and pointing). The tragedy is that her difficulty with spoken words is how she is judged by everyone, unfortunately, including us, until recently.
When it comes to her schooling, this misjudgment is terrifying. If you force a child to read aloud who does not have her speech center efficiently “wired”, them judge her intelligence by her poor performance and then dumb it down further and further, you are imprisoning her by your false assessment. We can’t let that keep happening to Emma, yet teaching her teachers will not be easy. We need an ally in the school who will take the time to watch all these sessions, until they totally “get it” and then make sure all her other teachers not only get it, but do something about it.
I can’t say I feel overly optimistic, but I know if we don’t succeed with getting Emma a proper education at this school we’ll just have to find another way.
It is incredible to watch those videos. I will watch them with you, because there was so much I missed, because I was so overwhelmed with what I was seeing. It is incredible and fantastic and exciting! I am not too optimistic about her school either, but we will figure out a way, with them or without…
There is such an emphasis on speech in our society. It’s sort of like how politicians are praised for being excellent public speakers, but what they say is usually completely empty and meaningless, just a waterfall of words tumbling over each other. But they are seen as more deserving of respect than someone like me who when I’m emotionally overwhelmed sounds like that same young child. Just because of words, words, lots of words.
I think it’s something that especially “high-functioning” Aspies try to avoid admitting. That it could and does happen to us as well. And as soon as we lose speech, our hard-fought place in “normal” society is gone and we get treated like little children, with all the consequences that entails (no more autonomy, no say in decisions concerning our own bodies and lives, no longer getting heard). It’s bloody scary.
That’s why it means so much to me that you’re “hearing” Emma. Maybe it’s not always easy and maybe you haven’t heard her very often in the past, but you’re TRYING. And that’s AWESOME. Even if there’s only one or two people in someone’s life who “hear” them and understand them, that’s enough. Isn’t that how we choose our friends and especially our partners as well? That person who “gets it” even when the rest of the world doesn’t? The fact that you can do that for Emma, and for me, and for countless other autistic people, even with all the struggles that have led you to this point, means more than I can say in words.
Thanks so much for this…
Incredibly, most who work in the field of autism remain convinced that speech is and should be the goal, even when it becomes clear verbal communication is not something that can be had by some, they will still hammer away at it. So much so that people would rather prompt and have specific words memorized for specific occasions than to spend all that time and energy finding other, more useful ways to communicate.
I loved your description of some politicians “what they say is usually completely empty and meaningless, just a waterfall of words tumbling over each other.”
It’s sad because the more I’m being pressured, the less I have access to words. And I’m extremely verbal on my good days, in two languages! And yes, even my supposed “native” language feels foreign to me. That’s why I don’t really feel any different expressing myself in English. I always have to look for the right words anyway, no matter which language I’m talking in.
But the pressure to talk. I just don’t get why people think that would work with someone who melts down under pressure.
I spend so much time in this corner of the autism community, it can be really shocking to be reminded of how wrong what most professionals still think about autistic people can be….
Be a Buddhist. Live in the moment, and relive that moment when you said: “I was riding on a cloud of excitement!” That’s where you both are, and I’m there with you, riding on a cloud of excitement. To me this is what religion is all about, how to be nice to each other, how to love your “neighbor” (metaphor for the other) like yourself. You have to love yourself. I love you. Emma loves you. Richard loves you. Why can’t Ariane love you too??
We all make mistakes. If I were to start reviewing mentally all the mistakes I’ve made in my life it would take me the rest of my life to get through the long list (and I intend to live a long time!)
So instead live in the moment where Emma is and continue to ride on that cloud of excitement.
love, love, love,
Being present and showing up for whatever happens next is certainly the most sane way to live one’s life.
Thanks for the love and all your support, Mom.
I love you.
♥ Em has you and herself as her best resources.
She has resilience and capacity for forgiveness – coupled with a wisdom that belies her years.
And then she has a parent with the capacity to search for what is right – and keep searching: one who is willing to look deeply and adjust to accommodate and embrace new learnings…
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
“a wisdom that belies her years” yes she does. Thank you for being there for me, dear friend. Means more to me than you can know. XXX
This has turned out to be a beautiful Monday now that I read your post Ariane. I vote for pulling Em out of the school and homeschooling her. Hey, in fact, I would make her the In-house-editor for both of you since she is a great speller. You do take her to so many activities and if you could both rotate some time around, you could successfully have that one-on-one time with your child connecting deeply and lovingly and learning from her and teach her. I am very happy for you. Live in this moment, enjoy today and stop living in the past Ariane. You learned and you did better and you are doing better, be nice to yourself. Em ordered it, be nice to yourself first. You are always nice to others.
(two writers in the house and Em spells better, I am now waiting on her taking over jewelry design, I bet she would do that better too. 🙂 ) Love to you all.
Oh, so glad this post brightened your Monday! 🙂
Em has so many talents… and more are being discovered all the time!!
Yes to all of this. We are entering this struggle at the same time and I believe that many, many others will follow us. When I see Oliver typing out his words, painstakingly but perfectly and beautifully, I think that he is incredibly special but not any more special than all the other non-verbal autistics out there who haven’t yet found their way. Oliver authored my latest blog post and said: “I think we should always believe that people can do great things if we understand the kind of help they need and give it without wanting the person to be different.” And he is right, isn’t he? It is our perception of what it means to be autistic that limits the kind of help we give. Once you see it to be true you just want to change it for every kid.
Agreed. And by the way, what a wonderful thing Oliver wrote!
Also remember that time when she came up with mash-up music by herself. 🙂 That’s not a kind of intelligence that gets rewarded by standardized tests or standard academic assessments. It doesn’t surprise me that Emma’s smart in all the usual ways, too, but she’s brilliant in some really uncommon ones as well.
Oh my gosh, I’d completely forgotten about that!! Thanks so much for reminding me.
I hope someday, *everyone* listens. I think Emma is destined to change the world. It gives me hope!
Oh Ang, I hope so, I hope so. She is so full of forgiveness, kindness and compassion… I am in awe of her, truly.
You help me to regain focus so much through your journey as it is helping me through ours. I too have recently reached those breaking down points, needing forgiveness of self because I know both of my Awetistic angels have forgiven me through my own misunderstandings. Thank you for this post!
Thanks for leaving this here, it helps knowing I’m not the only one in feeling this way, though I’m sorry you have felt similarly
I read this blog and I feel the love flowing in all directions. To me, you and Richard have given Emma the greatest gift, you see and honor who she is. It does not matter that you did not know what you did not know earlier in her life. During those years you also did your best. Now she knows that you can see her because you never stopped trying. As a person who’s been disabled all my life, that gift, of being truly seen and appreciated, is the one I cherish the most.
Corbett – thanks so much for this… it is very meaningful to me and meant a lot.
I do get how speech can be halting and writing not. It had been a long time since I was as stressed as this past week, Having planned multiple times for the dreaded what if I can’t speak at all without it happening this week reminded me of all of it.
Of what it is to be spoken of by others as if you are vermin and have to fight to not believe that. Sadly in my case the people were not under the impression I could not understand at the time. When you are 45 and don’t fit anything the system offers you are a problem of proportions that some people have the mental ability to quite easily blame you not the system that has not place for you.
I found my speech so fluent in the journals I carry with me and on my laptop get slow and monosyllabic when it came at all. Doctors who don’t know me tend to draw conclusions from that although right now having recently been re-subjected the fun of puzzles that make no real sense and math word problems my IQ is rather close to the front of the chart most won’t look. Not that that is a meaningful measure of anythng but my ability to do those things on the day they asked.
My speech dwindled to nothing, My ability to be around people also to nothing. I walked 6 km in the rain home rather than try to find a phone booth (a hard task now) because I was not sure anything coherent would come from me and seeing me like that might scare any friend I currenty have,
It has stayed like that for days. I can do my work when I am awake which I try not to be.
Since the issue that made things so bad was medical it came as some relief that the person who will attend to me tomorrow is the nicest surgeon on the planet. Truly compassionate. He squatted by my bed one time, saying he was doing it so I could actually see his eyes because he wanted me to really understand he did not find me a burden to work with (he had gotten the impression I might I guess or knowing practically every doctor in his field does thought it might not have escaped me)
The words that get totally trapped when I am in a room with people who regard me as less than them, as a problem, perhaps as an interesting case but still a problem come easier around a person who treats you with compassion.
I hadn’t had the total I couldn’t speech if I wanted to for awhile and it is never a good sign for me t this stage but to me when you put things on paper or a screen it is not the same as them going to the world directly. I don’t know what it is like for people who never do speak but for me all of the time that is much harder but sometimes it is not possible. The world is so rejecting. It isn’t even listening to the most basic message like be kind to each other which millions have said but how many take it to heart? To put things that are an effort to create out into a deaf world seems so futile much of the time even when I am being responsive to people the bulk of my thoughts cannot enter this world.
Maybe there is some utopian place able to see everyone as people deserving of compassion and decent treatment. Able when you send a kid off to school to treat them all in a way they will want to go back. Able to see an adult who is not like other adults as a person not a problem but we are a long way from there now. Until then honestly that anyone speaks fluently should be the shocker to me.
If we turn the issue around. How do you turn your thoughts out into this rejecting world? It’s not like it is the most accepting of places even for “normal” people.
I don’t know how much of the mechanism that slows speech or turns it off has to do with that even. I know for myself that stress makes it worse and people who are horrid for me fast track that stress to full although stress gets mentioned by a lot of the unreliably verbal.
Still the question of how NTs manage to set their words free with relatively little anxiety should be asked shouldn’t it?
Oh dear, Gareeth, I am really saddened to hear of your ongoing hospitalizations and the issues you must cope with as a direct result of not being accommodated even remotely.
As far as non autistics who are able to set their words free without anxiety… I think it’s a minority who are able to do so without anxiety, but even so, there is most certainly a neurological reason for the issues faced by those like you, my daughter and so many others. It is not for lack of desire or intent, but a difference in neurological wiring. Of this, I am convinced. I am currently reading a fascinating book, “Natural Language Acquisition on the Autism Spectrum” (I don’t love the title, and would not have bought it had it not come highly recommended to me by a couple of autistic friends.) I have just begun, but it is interesting and discusses, at least some of this, that you have asked.
I am happy to know your surgeon today is kind and hope you will be in his good care. Please do keep me updated. Thinking of you and hoping you get through this and back home relatively quickly.
Was actually wondering more how NTs do it. I know in certain situations NTs experience anxiety but say if I have to go to a dinner party and I sit an I watch 14 people all talking away at roughly the same speed and never uncertain of what is a joke and what is not and never afraid to say whatever comes to mind I do so want to know the difference.
As for differences within the autistic community since most research suggests multiple genes are involved there could be an answer there. Every one who goes to the local meet up group for “Aspies” (blrh I do loathe that term) seems to have no problem at all. They are all too social for me actually and I attend every year or two at most. I suppose it self-selects a bit it being the most paradoxical of things in a way for people on the spectrum I am least likely to relate to.
It is a frustration to me and I guess it always will because one does not expect much more developmental change at my age that I can often speak so fluently people comment and praise it. I do the public speaking for the non-profit I belong to (although that’s a bit different because you plan what to say first) but I can speak well and passionately in the ideal situation and then in others be taken for someone with the IQ of a toaster and have people looking around for my minder because surely I must have one.
I’ve learned that even if I prepare for a situation (often medical) knowing that will likely happen the staff are not going to respect any note I write myself about the situation which is in itself stress causing in the one more way they make me feel non-human.
As for yesterday’s operations they were fine. They ran late and they changed the wording on getting away from there so I had to stay overnight. That particular surgeon should teach more but I doubt compassion can be taught. He has never treated me as less than deserving the best care or less than human or any of that. Sadly he is the only doctor in hundreds I have experienced who that can be said of other than my university GP I guess and one oral surgeon. So maybe 3 out of a thousand in all (if you count all the residents, interns and med students)
Words didn’t enter into it much. They have you say the same stuff over and over basically and by now I know those by heart and miraculously I slept during the delay for my surgery. No one really wants to risk talking too much about the hard stuff in case they have to do something about it so it wasn’t until morning a nurse started in on the absence of care by the health authority but my friend came to pick me up right then.
I have next to me a sheet of instructions. I have to make an appointment for my stitches to come out. This is a situation where words will not come. I used to be able to phone after hours but more places have machines that don’t take messages then. It’s such a simple thing to do. Not being able to do it complicates me life a lot (which made it worth a lot of points on the activities of daily living scales that turned out to go nowhere despite my flunking them by a nice margin sigh)
My autism is why they have given up on me. 15 years they worded it that way but now they say I am too neurologically and probably biologically different from the mean for biomedical interventions to ever help. It still amounts to the same thing. No help.
If Voldemort speaks wanted to do something useful instead of searching for a way to prevent autistic people from being born they should look at how to keep them forever 17 so no help would not be a legal option.
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