Two days ago, Emma wrote her “Letter To the World” and yesterday while doing a throw-the-entire-house-into-disarray spring cleaning, I came upon a scrap of paper where I’d scrawled an enthusiastic note about something Emma had said. I was so excited by her comment I had thought to write it down immediately lest I forget. I even dated it. The note read, 11/20/11 – Emma saw the next word we were about to work on and she said – “today we do “see”! You see I did not realize then that Emma already knew how to read. At the time, we had no idea of Emma’s capabilities.
Along with this note were books on counting, a whole book devoted to telling time, another that dealt with coins and the value of a penny, nickel, dime and quarter. There were kindergarten level readers and books featuring simple addition and subtraction, along with multiplication and division flash cards that remained wrapped in their original cellophane wrapping, having never been opened because it was not believed Emma had mastered addition and subtraction yet, so how could we possibly expect her to move on to multiplication and division?
There have been other notes over the years, just like this one; little bits of paper where I jotted something down because I didn’t want to forget. Usually noting things Emma said or did that proved to me that what people were saying about her were wrong, but often they were just moments, moments I wanted to record so that when I was feeling sad or discouraged I could see that there was progress, little glimmers of progress no matter how infinitesimal, they were undeniably there.
For those who have read what Emma is currently writing, all of this will seem a little strange. You see, Emma has told us that she already could read more than two years ago when we were breaking everything down to its most basic, going over one word at a time, over and over, making sure she knew it before building on to the next and then the next. All those years spent going over the concept of addition or subtraction, only to have her flounder when asked what 6+5 equaled. Or when asked, “how do we spell “cat” she would remain silent or if asked to write the answer by hand or to type it, she could not and so we assumed she hadn’t learned the word yet.
We believed that because she could not read aloud a level one reader, or answer a question about the contents of that story, it meant she was unable to read or understand. When she was unable to answer us, little things like, “where do we go to buy milk?” and she would giggle and say something completely unrelated like, “it’s Mommy’s turn” I would then despair, look at my husband with fear and believe this proved, yet again, just how far we had to go. There were other fears too. Fears about what all of this meant to my child for her future, but increasingly I would try to head those off with a kind of stoic resolve to not give into them and to review once more the concept of quantity, or time, or value, or the spelling of a single-syllable word.
Of course looking back I see how wrong we were. I understand now that the problem was she had no way of communicating to us what she knew. She could not “tell” us, she could not “show” us in any way that we were able to see. All those reading comprehension questions, all those work sheets, all that fear, all those days, months, years spent in terror… I see this now. I “get” it. Now. Now I get it, but for so long I did not. For so many years I didn’t understand. I kept thinking she couldn’t learn. I kept thinking what was being said to her wasn’t understood. I kept thinking that I had to use more basic language, that I was complicating things, that the answer was to dumb it down, to do more review, more repetition, more of the same, over and over until she could answer me in the way I believed showed she’d learned.
Meanwhile Emma patiently waited for me to understand. Years went by and Emma continued to do her best, hoping, hoping we would finally catch on. With Soma, Emma wrote how grateful she was to us, her mom and dad, for “not giving up on me, I was so scared.” And as I sat watching her type those words I wept. Tears of gratitude for her, for not giving up on us, but also tears of sadness for all those years… years of misunderstanding, years when we just didn’t know. Every time I would read about a child who did not speak, or did not have conversations using spoken language, but who typed incredible insights, thoughts and opinions, I believed they were an anomaly. I didn’t dare believe my child could be like those few who were speaking out. I didn’t dare hope. I couldn’t. It was too painful.
“They say hope is cruel for the hopeless, but maybe they are the cruel ones.” Emma wrote this the other day and as she wrote those words I reflected on the irony of it all. One day I hope this idea – that we mustn’t raise false hopes – will no longer be what parents like me are told. One day I hope those people, the therapists, the educators, all those people, many of whom are in the field of autism, who mean well, but who do not know what our children are capable of, will realize how wrong they are and will stop trying to protect parents like me from what they believe is “false hope”, but it turns out is simply what they do not know and have not yet come to understand.
Great post and one I relate to so well. I have a lot of hope that the tide will turn regarding the way people view autism. Like you I feel the pain of many years lost with my son, but I also feel like we can use those years as fuel to drive this movement forward. Many families are still stuck in the old way of thinking but we can come alongside them, say we have been there, and plant the seeds of hope and change. I am encouraged by the rising number of previously silent voices, Emma and my Philip included, speaking out loud and clear that they are intelligent and worthy to be heard and cherished. With the help of respectful methods that presume competence, like RPM and FC, more voices are made heard each day. Change is coming!
When Kayli was in school, she was far below grade level in all academics, even though she could usually at least hold her own in discussions. No one knew she could actually read because she couldn’t read out loud. In fact, she did her very best to hide or otherwise avoid reading out loud, especially in unison. In fifth grade she was given second grade work to do, even though I knew she had the concepts of multiplication and division and could do multistep word problems in her head. Timed tests and writing are very difficult for her. So is the performance anxiety. She can’t think in the chaotic school environment with all the kids “thinking too loud” and flickering florescent lights. Now, she’s joyfully reading “creepy pasta”, and I do know she’s at least reading ninth grade level. We’re having some good discussion about genetics.
What becomes so frustrating for me is knowing…but the tests will never prove his abilities…so fear he’ll be yet another stuck…doing things hes known for years but can’t prove in an acceptable way…grr hurry up world
The beautiful thing is that you loved, respected, and hoped for her, even when you thought she didn’t have the ability to understand. Everything you did came from that love, hope and respect. You created a rich environment so that Emma’s natural abilities could develop. We all do the best we can with the information we have, when we come from a place of love.
This tangential. I read what Arianne had to say before going of to work. In the second half of my shift, the fire alarm went, so we all decanted outside. Lots of emotional swirl as staff and students dealt with what we had to do. When everything was dealt with, we all went back to our various situations. All except this one tall, handsome autistic girl, who played with the surface of a puddle, in the starlight. The beauty of what she is and what she was doing, it expressed in every nuance of being and action, was inexpressible. That set me up for the drive home. Turned on the music, and it was Dolly Parton singing “Coat of Many Colours”. Struck me that the song was as much about what Emma and Arianne are doing, as about anything else. “Momma sewed the rags together, Sewin’ every piece with love, She made my coat of many colors, That I was so proud of”: seemed to me to express what you mothers of special children do; seemed to express the gratefulness of Emma for what her parents did in hanging in. The rags seem like the fragments of good hope that mothers seize on. All the other metaphors of the song had their place.
The labels. I still have two left on doors. Go Emma go! God protect my son so he may someday hope and have this chance. Thanks for posting this.
thank you, I feel like reading this post again and again. It will require a huge shift in my own thinking process to understand that there could be an enormous disparity between verbal and written language in autistic person.
We are at the end of year 2 of ABA therapy 6-8 hours weekly. ABA is OK but there to go next? As autistic chid is here to stay with me… and my autistic child did not turned out to be a social butterfly or highly verbal child. and my autistic child continues to give me an odd answers to a simple question or shows signs of paranoia or some days she can be quite angry with this world.
Thank you for posting this, I always come away from this site renewed and ready to see what my son can do next!
“Never give up, you don’t know their limitations”. This is what I tell myself and every parent with a child on the autism spectrum .
I don’t have a child with autism, but I’m struck by how much we could all learn from what you wrote. So much of what adults use to determine a child’s level of understanding or capabilities have less to with the child, but reassuring *us* of what is in there. I think any parent could (and should!) learn from what you’ve written here. 🙂
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