The Sound of Recovery
By Julie Obradovic
I remember the moments vividly and painfully. I have some of them on tape.
“Evie, what’s your favorite color? Evie. Evie? Evie, over here. Evie, look at mommy. I’m talking to you. Evie, listen. Evie? What’s your favorite color?” I asked repeatedly in my nicest mommy’s-on-video voice, my disappointment and impatience obvious anyway.
“Blah, blah, blah,” she finally replied looking at the camera but not in the camera. Literally that’s what she said. Blah, blah, blah.
“Blah? Blah? Blah?” I repeated confused and heart broken. “That’s your favorite color? No, it’s not. Come on, silly. What’s your favorite color?”
She never responded. Instead she turned her back on me to play with the staircase spindle, a favorite past time at the time. She was 3.
Eventually Eve learned the answer to that question was “red”. “Red” made mommy and everyone happy. But soon enough I was on to her.
“Evie?” I asked one day. “What’s your favorite color?”
“Red”, she replied automatically.
“Oh, yeah? And what’s your favorite food?”
“Red,” she replied again.
“Really? Okay, then. What’s your favorite book?”
“Red!” and this time she started laughing. She had no idea what I was asking her. She had simply learned that the word “favorite” should be followed by the word “red”. I was devastated all over again.
Over the years, I have had to wait a long time for her words to truly come. I am a language teacher by trade and it has been with incredible interest I have watched as she has learned her first language the way someone learns a foreign one. The difference is, however, she has nothing to compare it to, nothing to fall back on when she can’t find the word in her own language. I can only imagine her frustration.
By kindergarten we were mainstreamed without an aide, but we weren’t out of the woods. In that year as well as first grade, I almost gave up asking how her day was because it was too painful to hear the silence. “Good” became the new “red”. It stopped there.
But “good” wasn’t good enough for me. I wanted more. And soon I realized I could sort of get to the bottom of things by giving her questions to respond to that had a choice.
“Well, was it fun or boring?”
Fun.
“Did you have gym or art today?”
Gym.
As long as there were choices, she could respond authentically. Without them, however, she was stuck.
This method of communicating continued for years. By third grade, we were finally up to full responsive sentences. There were even appropriate gestures and voice inflections.
“It was fun! I really liked it!”
Still, it was hardly the conversation you hope to have with your daughter about her school day. Most of what I learned about what was going on had to come from the other moms at the bus stop. It sucked.
In fourth grade, Eve got even better. Occasionally she would ask me something about my life, and her sentence production increased dramatically. Although it still wasn’t the flowery, spontaneous give and take type of conversation I dreamed of having, it was a conversation.
That said, I knew her real thoughts and ideas were right there lurking behind an invisible barrier. I just knew it. And one day, she let me know it.
“Why won’t my brain work?!”, she started slapping herself in the forehead while doing homework. “What is wrong?!” she kept slapping. Hard. Angrily.
Stopping her and trying to calm her down I listened to her lament.
“I know the words, mom! I know what I want to say, and they won’t come out!”
The air was sucked right out of me. Eve was becoming aware. She had likely been aware for a long time. I was so sad for her and yet strangely happy. This was progress.
From that point on, we’ve worked even harder on the skills to help her get to the word she needs. I’ve added TPR training to her daily vocabulary practice. TPR stands for Total Physical Response. Vocabulary is best learned not through pictures and recitation, but through repetitive, exaggerated actions. (You should have seen me flapping on the floor last week trying to teach the word “flounder”.)
I’ve also taught her to rely on circumlocution, which is the ability to describe the word you need without saying it. “It’s an animal that…” or “It’s a place where…” She’s actually done remarkably well with both of these methods I use in my classroom every day.
This was an exchange just last summer when she wanted to buy her sister something for her birthday.
“Can we go to that store, mom?”
“Target?”
“No, not Target.”
“What store, Eve?”
“You know, that store we go to?”
“We go to a lot of stores. Can you think of where it is?”
“Yes! Um, wait…(long, long pause) what’s that thing Maddy does again?”
“What thing?”
“That thing with the pink shirt? With her friends?”
“Pink shirt?” my mind was searching, desperately trying to help her. I could see her frustration. In the past, she would have given up by now. I wasn’t going to let that happen.
Finally, I realized what she meant. Pink shirt? No, pink leotard!
“Do you mean ballet class? The dance studio?”
“Yes! Ballet!”
“You want to get her something for dance?” I asked not understanding at all how any of this was connected.
“No, no! It’s by there!”, she got angry.
“What’s by there?”
“The store!”
“Oh, Sears? Do you mean Sears?” Sears is next door to the dance studio.
“Yes! Sears!” she slumped over with exhaustion. “I want to go there and buy her a toy.”
I stared at her in awe. This poor child at 10 years old just worked harder to get to a word than any of my AP students ever have. She went for one word and couldn’t get it. She went for her alternative word, and still couldn’t get it. She went for the third word, and it still wasn’t there. I cannot even imagine.
Well, that was last year, and I’m thrilled to say, her speaking skills have skyrocketed. Coincidence or not, at the beginning of the school year the new speech therapist asked me what the most important skill was she wanted me to have them work on. I wrote the following:
“I want to have a conversation with my daughter. A real conversation. One with give and take and spontaneous questions and abstract ideas. That’s what I want. My daughter is 10 years old and I have never really talked to her. If you can give me that, well, there wouldn’t be enough words to thank you.”
I remember crying when I wrote it. I talk to my 7 year old all the time. About everything. I know every aspect of what happened in everyone’s life every day. Nathan acted crazy today. Natasha got chased by the boys. And I would simply not believe what happened in gym class. Our conversations are rich and layered. She’s never at a loss for words. Ever.
Eve speaks. She speaks wonderfully. I don’t take a word out of her mouth for granted. But a real conversation? Never did I think while on my knees praying for speech I had to be so specific.
Recovery has been a long road. Every day is another small victory. A phone call from a friend. Remembering the code to get into the house. Showering in under 45 minutes without a prompt from mom or dad about what to do next.These are big victories for us. We relish them. Tonight was no different.
Up the stairs to get ready for bed, Eve brought along a peeled orange. She put on her pajamas and asked if she could eat a few slices before bed. I agreed.
While waiting for her to finish, I asked the typical questions I do everyday, not expecting anything different.
“So how was your day today, honey?”
“It was great.” (great = good = red)
“Oh, yeah? Why?”
This would normally be followed by a shrug or an “I don’t know”, but tonight she answered.
“I had art. We’re making sculptures.”
“Wow! That sounds awesome. Out of what? Clay?”
“No, cardboard boxes. It’s really cool.” Her eyes lit up.
“Sounds like it.”
She finished chewing and looked right at me.
“So how was your day?”
“My day?” my eyes bugged out of my head a little. Did she just ask me how MY day was? My heart skipped a beat.
“Well, it was a busy day. I’m tired.”
“Tired why?”
“Well, I had a lot to do.”
“Like what?”
“Like teach all day and take care of you guys. I even worked out.”
She ate another slice and then continued.
“What’s it like being a teacher?”
“Well,” I paused taking in this magical exchange. “You’re on your feet all day. And there are lots of papers to grade. I have to go grade some now.”
“Oh, yeah. You do have to grade all the homework.” She emphasized the homework (something she loathes), paused and took another slice, looking around in deep thought. “If I were a teacher, I wouldn’t like that. I wouldn’t do that.”
“You wouldn’t grade the homework?” I laughed at her. She was serious.
“No, I wouldn’t have to. I wouldn’t give any.”
“And what class would that be might I ask?”
“Art. I’m going to be an art teacher. There’s no homework in art!”
She giggled, almost making fun of the fact that she was going to teach what she perceived to be a better subject. I was floored. She actually really does want to be an art teacher.
We continued talking for a good five minutes longer. She wanted to know how many days until March because her birthday is in March. We talked about her birthday plans and she suggested three party options, equally fun I must say. She remembered at one of the options she left a beloved stuffed animal years ago and got sad thinking about where he may be these days. And when I asked her who she wanted to invite, she counted on her fingers that she really only has four friends, to which I replied, “It’s not the number of friends we have, but the quality of friends we have that matters.”
“Oh, yeah,” she nodded in agreement. “They are good friends. I’m lucky.”
Oh, yes, Evie. You are lucky my sweet child. And so…so…so am I.
Ten years. It took ten years to finally talk WITH my daughter.
Never give up, everyone. Never, ever, ever give up.
Julie Obradovic is a Contributing Editor to Age of Autism.
This article helped me when I was worried about my 3 year old. She's doing much better now at 8. How is your daughter at 14? Is she social? Thanks for sharing your story.
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Posted by: Openoffice free | March 19, 2013 at 08:42 AM
Your daughter's progress toward conversation is very, very much like that of my daughter, who has Mixed Expressive Receptive Speech Delay, not Autism. We're a year behind (my daughter is 9), and I do see the light of real conversation starting to shine. May both our girls progress beyond our hopes and dreams!
Posted by: Missy | March 22, 2012 at 02:56 PM
Thanks for this post! My son is 8, and I needed some encouragement in the conversation area of speech. I remember him being nonverbal at 3. I remember when his favorite part of the day was always "play trucks" at age 4. Now he tells me a new favorite activity of the day everyday at age 8. I will keep looking forward to more give and take speech by age 10. Sometimes I feel "stuck." Thanks for the reminder of how intentional we must be as parents, and how rewarding it is! And please share your favorite resources for building conversational speech. Persevere!
Posted by: moosemom | February 29, 2012 at 11:32 PM
My son at 17 years is just about typical now, arguing fowl mouth, saggy pants, spends every penny he can find on "pot". I can remember when he was 5, still struggling to make a sentence without echolalia. It's been a long hard road, his grades are bad and the school wants him to graduate this June, at 17 he is not that ready by a long shot.
Posted by: Enlightened | February 28, 2012 at 09:58 PM
We've been working for over 5 years now with a Dan! doctor, a homeopath, a chiropractor, a dietician, speech and language pathologists, IBI/ABA therapists, a Craniosacral therapist...the list just goes on and on.
Our journey can best be described as an unbelievable mix of incredible highs, and painfully disappointing lows. It often requires all the courage you can muster just to keep moving forward.
And then you read a post like this, which reminds that to NOT persevere could be the biggest mistake of your life.
Thanks Julie , for that little shot in the arm that we really needed, and probably never would have gotten anywhere else.
Posted by: Barry | February 28, 2012 at 06:35 PM
Wow, Julie, I am so glad we're Facebook friends (well, I'm glad we're regular friends too!), and I could click a link and get to this page. You just hit me in the face with "Perspective." As in, "you know, I really can't complain about my life" type of perspective. The perspective I'm always telling my kids they need. I am in awe of you.
Posted by: Kate | February 28, 2012 at 04:47 PM
The linguist Noam Chomsky said in the 1960s that babies are born with physical structures in their brain set up to receive grammatical structures, they just had to place the structures they heard that were used in their language into the correct structure box, like a template already there. In a few years the structures dissolve, so that it's no longer easy to learn another language.
I believe that the encephalitis that often causes autism destroys this physical structure in the language center of the brain, making it very difficult for our children to learn the structures the hard way.
Why have speech therapists, twenty years into the epidemic, still not figured out that they need to teach English as a foreign language to our children? That it's not just a matter of piquing their interest, their desire to chat about some topic of interest to them? Is it because they would have to admit that it's cataclysmic damage that was caused by a vaccine?
Posted by: cia parker | February 28, 2012 at 10:17 AM
I think the hope has got to be that science passes these Harma's by . Watching Russell Blaylocks theories on excitotoxicity , is eye opening , here is a guy who is really trying to get a handle on the mechanism behind Autism , and he is so confident he is right , that I totally believe him . And the workings of the brain isnt such a mystery anymore , people are really close to major breakthrough's and it means the days of vaccine derived autism will be left behind(like the horse and cart) . Another worry I have though is the military involvement within the vacine autism story , has anyone else noticed that ? eg . the chief of the National Acceptance Society in the UK is ex-forces (why?)and I do have other examples .
So it looks like we are up against some big players trying to muddy the water against us . Having said all of that , maybe I'm wrong , maybe Autism is due to older fathers , or acid rain , or traffic levels or maybe electric lighting or any other ridiculous reason they can think up . One thing to notice though , is that the majority of people are kept blissfully in the dark that autism is a poisoning and there is no one arguing against that (even the genetic argument seems to be in tatters) .
Posted by: NeSSuM 200 | February 28, 2012 at 03:57 AM
Many with speech difficulties caused by brain damage are able to recover speech through SINGING, which uses a different part of the brain. A friend of mine who lost speech after being in a coma for 4 months was able to sing with no speech problems whatsoever, but plain speech came out very garbled.
Gabrielle Giffords' speech therapists have been working with her in this way, according to news reports.
Another thing that is VERY helpful for speech is drama classes. It takes the best of speech therapy--learning appropriate back-and-forth dialog, body language, facial language, intonation, timing, etc.--and combines it with being surrounded by (mostly) neurotypical kids to model these skills.
For aural processing therapy (a component of speech, when you think about it), Suzuki violin teaches pretty much the same thing, but the kids come out of it with a skill that puts them in social situations. And Suzuki violin training is based on repetition--seems almost tailor-made for autistic kids!
These two things were some of the most important "therapies" we ever did for our child.
Posted by: Taximom5 | February 27, 2012 at 09:07 PM
Reminded me so much of my Tristen :) Thanks for sharing and making me feel not quite so alone in this world :)
Posted by: Meadow Davidson | February 27, 2012 at 06:33 PM
Do you ever read something, like just at the right time and you sigh and think "that's exactly what I needed to hear"...well this was that article for me! I don't know you, but I just have to say I share in your happiness!!! Much continued success to your daughter!
Posted by: jhp1421 | February 27, 2012 at 05:58 PM
Julie,
Eve's story on the GR website years ago inspired me, and you're still doing it!
So glad your girl is progressing so nicely. ;-)
Posted by: Michelle | February 27, 2012 at 05:46 PM
Jesus Christ. I'm sobbing again. Our kids are so similar - as Alec turns 10 years old in a week. He is almost in the same place Eve is and my fear, sadness and excitement mimics yours exactly. I'm blubbering to hard to write more. I gotta blow my nose. Just wanted to thank you again for an amazing piece of writing that tells your story ... And many of ours.
Posted by: jacey smith capurso | February 27, 2012 at 05:25 PM
NNNNNNEEEEEEEEEEVVVVVVVVVVVEEEEEEEEEEEEEEEERRRRRRRR!!!!!!!!!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo! Meeting Evie gave us hope. I will never forget her answering the door. "Hi!"
"Are you Evie?" YEP! All full of happiness to...be...EVIE! :)
love you JULIE! lj
Posted by: LJ Goes | February 27, 2012 at 05:17 PM
For the record I don't think migraine is the start or finish of autism by any means, but may be a good target of treatment in overall therapy. I also think gut organism are part of the interpaly of dysfunction though the article plays this down it appears. I am posting the abstract, but the whole article is worthwihle as it speaks of "abdominal
migraines". This all ties together with stomach, vascular, endocrine and immune function plus more and researching on ADA and Adenoine, Insonine, hypoxanthine, gastrin, amylin and rna signaling and interference will probaly be interesting if you have the patience.
The Minicolumnopathy of Autism: a Link between Migraine and Gastrointestinal Symptoms
Abstract
"
Gastrointestinal symptoms are common medical problems among autistic patients. A leaky gut and viruses have been proposed as possible culprits but evidence for these etiological agents remains elusive. In this article we put forward an alternate etiology: abdominal migraines. Recent postmortem studies in autism indicate the presence of a minicolumnopathy and its relationship to both serotonergic abnormalities and a hyperexcitable cortex. These features of phenomenology are also observed in miganeurs. A putative relationship between autism and migraine is further suggested by similarities in clinical histories and laboratory evidence. Some commonalities include the presence of neuroinflammation, sensory overstimulation (e.g., flickering of fluorescent lights), “food allergies”, benefits from similar diets, and the role of nitric oxide. Abdominal migraine therefore stands as a falsifiable hypothesis with added importance accrued to potential therapeutic interventions."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2211386/
Posted by: Visitor | February 27, 2012 at 04:17 PM
Julie, That is so beautiful. I am a great believer that as the mercury comes out (over a lifetime), the body and mind heal, and I think that's what you are seeing here.
And here is the autism story that has kept me happy for a couple days already. : My grandson in the US, who has had many minor symptoms of autism (mostly gone by age 10) went to a birthday party for his friend Jon, who has been diagnosed with autism. Due to his autism, this is only the second birthday party that Jon has been able to have. The party was at an ice rink and my grandson and his little brother had a wonderful time on the ice ( They are 10 and 6 and could not have enjoyed this a couple of years ago) Towards the end of the party, my grandson told Jons mother, " This is the best birthday party Ive ever been to!" .... and my daughter saw a small tear appear in the mom's eye.
Posted by: Cherry Misra | February 27, 2012 at 03:42 PM
Julie,
Your account is inspiring and, so good in displaying the comprhension shift we have to undergo to grasp the real-time barriers our loved ones suffer. Our stories convey the trajectory of those who have not developed a languge and global relationship in intrinsic meaning of words to concepts and it is like the mind blindness described in many accounts. If you take someone who has matured without barriers and then some of the barriers, or even one barrier, is introduced you might get something like the woman in the link below dealt with.
Reporter’s Nonsensical Speech Triggered By Migraine
http://pittsburgh.cbslocal.com/2011/02/18/reporter%e2%80%99s-nonsensical-speech-triggered-by-migraine/
The video in the article said the reporter was given triptan for treatmetn. Angiotensin 2 blockers also teat migraines. If there is a constant level of the migriane mechanism occurring some children with Autism it may be part of their language/global proccessing difficulty.
Some children with Autism hit their heads a lot. It may be this is part of the reason.
Triptan - Wiki
Mechanism of action
"Their action is attributed to their agonist[1] effects on serotonin 5-HT1B and 5-HT1D receptors in cranial blood vessels (causing their constriction) and subsequent inhibition of pro-inflammatory neuropeptide release. Evidence is accumulating that these drugs are effective because they act on serotonin receptors in nerve endings as well as the blood vessels. This leads to a decrease in the release of several peptides, including CGRP and substance P."
http://en.wikipedia.org/wiki/Triptan
Posted by: Visitor | February 27, 2012 at 01:49 PM
Benedetta,
Don't assume that any pharma shill's child is "whole." Do we know that Offit's kids are unscathed just because his son was sitting in a chair during a lecture?
Julie,
The word retrieval problems you described are very familiar to me, and I was told by my child's doctor that the compensatory skill of using other words and phrases to describe the "stuck" word is typical of what stroke victims do. That tells you something about the injuries our children have suffered.
Posted by: Stop Big Harma | February 27, 2012 at 12:26 PM
I shared a lunch with my nephew the other day, he's an adult who has been diagnosed along the road with MR, PDD-NOS,Autism, and right before the closing of his high school years Aspergers. I've seen him descend into autism from a once bright vibrant little toddler to a child cowering in corners growling at anyone who dare come close. Our doc had a clue, some 18 1/2 yrs ago, started him on b12 shots, and waived vaccines for him and for my niece that was born shortly after. WAIVED VACCINES!!! in 1998!! We had a flu shot incident last year which DID cause a slight regression in progress, yet for the most part, I can say he will always be different, maybe someone may think, hmm, he's a little odd, but not quite put their finger on why. We had conversation, yep, real back and forth conversation, including his excitement over the new job he has. This is where I became a bit upset. His "job" is menial, with a light social aspect built in , yet so beneath his capabilities. His brain is working, the system is dropping the ball, far too many are being "processed" as retarded. This young man is bright, and could do a million useful things beyond tagging clothing and soda socials. This is horribly upsetting to me, as a mother of an eleven year old who is on the spectrum , as well. I don't want the door closed to his future by preconceived notions of those that are in the mix of the corruption and lies. The medical community has failed, or perhaps not, perhaps they have won, the coverup , the deceit is working for them. Example, I said jokingly to my 16 yr old son, will you uncover the cause of autism for me before I die, he said..sure I will work for years to be educated to commit suicide by research. That's a NO.
Posted by: barbaraj | February 27, 2012 at 10:47 AM
Thank you, Julie, for this beautiful post!
Posted by: timeforchange | February 27, 2012 at 10:46 AM
I could identify with this. My daughter is autistic thanks to the hep-B vaccine at birth, which I had said I didn't want her to get, and she also only replies great or bad if I ask her how her day at school was, nothing more. If I ask what they did in math (she's in a regular class for math, because the encephalitis only affected the right side of her brain, not the math on the left side), she just says multiplication, because she knows that's an acceptable answer whether or not it's true.
But her writing is often funny, and shows there's more going on in her mind than meets the ear. She wrote in a pet care book on the page with diet for hamsters, "You can give them peas, but they will roll away," she wrote on the calendar for October 15, "Go to Pirates' Landing (a children's pool that closed in the middle of August) before it snows!" , and on a extremely boring, difficult work sheet on John Quincy Adams, to the question: "Name one similarity and one difference between John Adams and John Quincy Adams," she put, "They both had Adams as their last name, but only the second had Quincy as part of his name."
Posted by: cia parker | February 27, 2012 at 10:33 AM
Just beautiful. Mother and daughter have arrived. Enjoy.
Posted by: Beth | February 27, 2012 at 09:16 AM
WONDERFUL! BEAUTIFUL! AMAZING! GOD IS GOOD! My God Son made his biggest strides toward the recovery he has today at age nine. NEVER GIVE UP!
Posted by: Pamela | February 27, 2012 at 08:47 AM
NeSSum 200
I meant Offit's son was sitting there as he was Philosophizing!
Posted by: Benedetta | February 27, 2012 at 08:37 AM
But it gets tiring to play 20 questions - wears you out!
But then when you are anxious about how something really went - it is frustrating to get "it was fine" and then a short sentence about the day when you want to know every detail.
NeSSuM 200: It is interesting that you mention about population reduction this morning because I woke up this morning with the video of Dr. Offit being replayed in my head. Toward the end of his speech which started out about just how hard it was to produce a good vaccine and nobody understands how hard he workded ---- but the end he starts Philosophizing about how humans main purpose in life is to pass on thier genes untill our sun burns out! and while he was saying it - his son that I assume is healthy and whole while Offit said this.
Where would you begin to reason with someone like that?
And while they are wanting to reduce the population - I have noticed that France has had such going on for a long while - since before WWII and it has been nothing but trouble for them, and for Europe too.
Posted by: Benedetta | February 27, 2012 at 08:34 AM
When will medicine admit their error ? Or is the issue in fact that this is all deliberate . A government sponsored poisoning ? Certainly seems suspicious when Bill Gates says they can reduce total Global population by 15% . I mean how does vaccination reduce population , unless they know and are pleased with the casualties of vaccines . Looks like this is total war to me .
Posted by: NeSSuM 200 | February 27, 2012 at 07:31 AM