Emma is extremely agile and very athletic. We had the following conversation while she was navigating her way along the top of our couch in the living room. She has very good balance.
Emma: (Pretending to lose her balance) Uh – oh! If you fall down, you have to go see Dr. Karlsrud! Toni! Toni Karlsrud.
Me: Toni? My sister Toni? Are you thinking of my sister?
Emma: Toni comes, Dr. Toni Karlsrud.
Me: Not Toni Karlsrud, just Dr. Karlsrud.
Emma (Laughing): Dr. Just Karlsrud.
Me: Emma! No not Dr. Just Karlsrud, her name is Dr. Karlsrud.
Emma: Just Karlsrud! You have to get down!
Me: Emmy, you know what her name is. (Pause) What’s her name?
Emma: Dr. Toni Just Karlsrud.
Me (Looking over at Richard): I know she knows her name.
Richard: I think she’s playing you.
Me: Really?
Richard (Laughing): Yeah.
Emma: You have to be careful. Uh… uh… don’t fall! (She pretends to teeter.)
Me: Hey Em! What’s your doctor’s name?
Emma: (Laughing) Dr. Just Karlsrud.
This morning while waiting for the bus, Emma was walking along the top of the little metal fence surrounding the tree in the front of our building, something she often does and has never fallen down from.
Emma: Be careful. You fall down, you have to go see Dr. Karlsrud!
Me: Oh now she knows her name.
Richard: Told you she was playing you.
Nic (Laughing): Totally!
Me (Shaking my head): Wow. She’s good.
I was just reading Ariane’s post about the toy store and it made me think of some of my own experiences. When we go to the big Toys R Us store in Times Square it’s the same deal — she can walk by aisles of Barbie dolls and Dora the Explorer toys without even a glance at anything. Instead she’ll head straight to the big ferris wheel.
FAO Schwarz is one of her favorite (and compulsive) stops on any trip to Central Park.
“Go to carousel. Go to zoo. Go to FOShwarz. Go to Apple store. Take the train, go home,” she’ll say on our way out the door on a Sunday afternoon, reciting her agenda and expectations for the day. At FAO she will immediately head to the hackysack kiosk, not to play with anything or watch the other kids playing, but to watch herself in the video monitor.
From there we head upstairs to the big piano and she’ll easily spend an hour running back and forth across the keys. Occasionally she’ll look at a train set afterward, if she can control the button that makes it stop and start.
We passed a toy counter filled with stuffed Sesame Street characters and I tried to engage her interest.
“Who is this Emma?”
“Cookie monster.”
“And who is this?”
“Big Bird.”
She had no interest in any of it but at least she answered the questions. And so it goes. The one exception:
Sometimes when we pass the section with the frilly princess dresses, she will stop and hold one up and say, “Pretty dress.”
And if it’s really pretty, she might add, “Get it daddy.”
When Nic was a toddler, I would frequently take him to our favorite local toy store, Kidding Around, where he would play with the elaborate train set, Tina, the owner, had in the back of the store. Very popular with the four and under crowd, particularly in the afternoons, we would go in the morning and often, Nic would have the train set all to himself. Each day of our visit when Nic was just beginning to talk, he would point to something as we were leaving, “That!” he would say, which meant he wanted to take it home with him.
When Emma was about the same age, I took her to Kidding Around, but nothing caught her attention. I tried to entice her, “Look Emma! What a pretty doll! Do you like it?”
She ignored me and wandered off.
Undeterred I went over to the two wooden tree stands filled with large plush hand puppets. They were lovely and soft, in bright colors and came in a variety of different species, toucans, leopards, dogs cats, horses, as well as mythical creatures and monsters – a favorite of Nic’s.
I thrust my hand in one, a beautiful white unicorn with flowing mane and purple horn, “Emma! Look! I’m a unicorn,” I said, in what I imagined a unicorn’s voice would sound like if they existed and could talk.
Emma showed no interest.
The one toy Emma was attracted to was the miniature doll’s stroller, which came in pink and blue. I placed a baby doll in one of them when I saw her looking at it. “Look Emmy it’s for the baby doll,” I said.
Emma pulled the baby doll out of the stroller and proceeded to try and sit in it herself. Terrified that she would break it, I said, “No Emmy! That’s not for you! It’s for the baby doll. You’re too big for this stroller.” Again I placed the doll into the stroller.
Emma threw the doll onto the floor, took hold of the doll’s stroller and careened around the store, heading toward the door. I chased after her and herded her back inside, admonishing her that she couldn’t go out into the street. Each time we returned to Kidding Around, out the door she would tear, steering the doll’s stroller around, and a few times into people who were in her path. It got so that I would block the front door while Nic played in the back, every now and again his little voice calling out, “Mommy! Emmy’s taken the stroller again!” I would position myself in front of the only exit, while she would try to maneuver around me, fixated on getting that stroller and herself outside.
“She just doesn’t like toys,” I reported to Richard that evening. “My sister never played with dolls,” I said when he didn’t say anything. “Emma’s athletic, just like my sister,” I finished, unsure of why I suddenly felt so defensive.
Posted in Autism, Parenting, Siblings
Tagged Autism, autism & parenting, autism & speech, autism and parenting, autism and the family, autism children, autism spectrum, autistic, autistic children, autistic kids, children special needs, children with autism, children with special needs, kids with autism, language, living with autism, parenting an autistic child
I was listening to Emma and Lee singing ‘Que Sera, Sera’ after Ariane posted it and was moved to tears as I always am when I hear how heartbreakingly pure and sincere her voice is. It is so sweet that I can’t think of any word to describe it other than angelic.
I first played her ‘Que Sera Sera’ on You Tube about two years ago after hearing a slow and somewhat melancholy version of the song in a Francis Ford Coppola film. I’ve always loved this song, even in the brighter Doris Day version, which Emma prefers, though the way she sings it brings out the poignancy of the lyrics and melody in a way Doris could never even dream of.
Emma has near-perfect pitch and a set of lungs an opera diva would envy. But so much more powerful and affecting than those qualities is the sheer sweetness of her voice, like everything that was good and kind and happy and wonderful in the world was distilled in a golden elixir that pours out whenever she sings that song.
Most of the time, her singing is loud and raucous, though no less heartfelt and touching in its own way, at least to my ears. Emma loves to perform, though there isn’t any trace of ego in her desire to strut her stuff. I guess that’s part of her condition to some extent, a reduced sense of self.
Last night before bedtime she said, “Talent show?” very loudly while I was playing chess with Nic.
“Sure Emma, we’d love a talent show,” I replied, smiling at Nic who smiled back with a “here we go again” sigh and headshake that seemed to sum up all his conflicting feelings – amusement, love, frustration, exhaustion, mild embarrassment. There was no one else in the house, so I’m not sure he felt any embarrassment, other than perhaps a conditioned response to similar, more public displays.
Myself, I was very much looking forward to the show, which turned out to be a medley of Carole King songs for children, culminating in ‘Chicken Soup with Rice’, which she belted out like a Broadway veteran. She always goes for the big finish and this particular song jumps up an octave or two at the end. She totally nailed it. Nic and I laughed and I applauded as loudly as she sang.
People often ask me whether Emma has any special talents. When anyone asks a question like that I figure they’ve been watching “Rain Man” and want to know if she has any savant abilities. I usually say that those types of abilities are associated with what has traditionally been called Asperger’s Syndrome – though I recently read that the medical community wants to abolish that term and use ‘Autistic Spectrum Disorder’ for everyone.
After that disclaimer, I will typically add that she does have an incredible memory and will mention things that happened to her when she was two or three years old. She can also remember very specific catalogues of objects, particularly photos. She really likes photos and home movies – I think they help her talk about and identify people, things and activities she enjoys. She has a shoe box with 100 or more photos inside and she will know instantly if one is missing, setting off a frantic household hunt for the lost picture in order to stave off a total meltdown or some self-injurious behavior, like biting her arm as hard as she can.
She is also extremely advanced in a wide variety of physical activities: skiing, climbing, balancing, jumping, swimming.
And of course, she loves to sing and dance.
There was an award-winning documentary that came out a while back called ‘Autism: The Musical’. It was a very inspiring movie and we thought this might be something Emma would enjoy given her showbiz leanings. When they started a program called ‘The Miracle Project’, based on this concept at her special ed school, we enrolled her and are very excited to see what might come out of it.
Every year at her school they have a talent show and every year, Emma has been the star of the show, soloing in ‘A Spoonful of Sugar’ from Mary Poppins in her debut performance. Since then she has referred to any of her singing performances as a talent show, which I love. I bought her a number of karaoke video games with microphones but she has been much more enthusiastic about singing along from memory to a DVD or You Tube clip. She has quite an impressive set list for her concerts now, which routinely take place at birthday parties or dinner parties (which are also birthday parties as far as she’s concerned), or whenever the mood strikes her. An audience of one or two is enough, though like most performers she likes to play a full house.
I’ve always thought that she’s a total rock star and someday she’ll be cranking it up on a big stage – leaving our ‘dinner theater’ circuit far behind. Time will tell. For now, I revel in her impromptu serenades and every time she says, “Talent Show?!” my heart skips a beat in happy anticipation.
(I wrote this yesterday at exactly the same time Richard was making his first entry on this blog. Soon we will be finishing each other’s sentences..)
“Is she okay?” I asked the mid-wife about a half an hour after Emma was born.
“She’s fine, probably isn’t hungry yet,” the mid-wife responded.
Something about the way Emma seemed to brace herself against my touch, her seeming discomfort with the air in the room, as though it scraped against her skin and somewhere deep down, I felt the beginning of a worry, a tiny twist in my gut.
Emma is our second child. Nic, her older brother by 21 months, had immediately begun nursing after I gave birth to him. There was a bond from the instant he left my body, a connection that no cutting of the umbilical cord could sever.
When Emma finally appeared after 19 plus hours of labor she squinted at the lights in the birthing room, seemed to push away from contact with my body, she had no interest in breast feeding, she cried and nothing I did soothed her, it was as though an invisible scrim had unfurled, keeping us apart. I shrugged the feeling off and reveled in her.
Eventually Emma became hungry enough that she breast fed, but never with any enthusiasm. Emma did not seem to take solace in breast-feeding or receive any comfort from it. It was fuel and that was it. With Nic I use to joke that breast-feeding was kiddy Valium.
When Nic was an infant we bundled him up in a sling and took him with us to a dance performance at the Joyce Theatre. The couple to my left audibly groaned when we took our seats next to them. About twenty minutes into the performance, Nic stirred. I began breast-feeding him. Immediately he fell asleep. As we were leaving the couple to my left said, “What’s your secret? We never heard him make a sound!” “Breasts,” Richard replied and the other man nodded his head smiling.
With Emma I remember thinking that she was astonishingly independent, even as an infant, that she was following in the footsteps of countless generations of my ancestors; strong women who had blazed trails of their own making, ignoring society’s attempts to dissuade them. Emma was the embodiment of generations of those women, I decided.
This morning, while standing in the kitchen (having forgotten what I was about to do) Emma walked over to me, wrapped her arms around my hips and rested her head on my stomach. I was so stunned I stood frozen, unable to respond. And then the realization that Emma was hugging me, actually hugging me, not because I had prompted her to, not because she had been told by someone else that this was what she should do, but purely because she wanted to.. it was an amazing moment. A moment of pure, unbridled, joy.
Some of the books I read:
Let Me Hear Your Voice: A Family’s Triumph over Autism by Catherine Maurice
*Nobody, Nowhere by Donna Williams
*Emergence: Labeled Autistic by Temple Grandin
*A Slant of Sun: One Child’s Courage by Beth Kephart
*An Anthropologist on Mars by Oliver Sacks
Maverick Mind by Cheri Florance
A Parent’s Guide to Autism: Answers to the Most Common Questions by Charles A. Hart
The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel
Handbook of autism and Pervasive Developmental Disorders by Donald J. Cohen & Anne M. Donnellan, ed.
Biological Treatments for Autism and PDD by William Shaw, Bernard Rimland, Pamela Scott, Karyn Seroussi, Lisa Lewis & Bruce Semon
Special Diets for Special Kids by Lisa Lewis
*Sensory Integration and the Child by Jean Ayres
Teach Me Language: A language manual for children with autism, Asperger’s syndrome and related developmental disorders by Sabrina K. Freeman, Lorelei Dake & Isaac Tamir, illustrator
*Engaging Autism by Stanley Greenspan
*The Child with Special Needs by Stanley Greenspan
*Denotes books that were very helpful and continue to be
When I wasn’t reading books on autism and canvassing the internet reading the endless array of therapies being offered, each with it’s own little morsel of hope attached – perhaps this will be the thing that she responds to – I was scheduling Emma’s early intervention therapists. There were often 7 therapists in a single day, coming and going.
I look back on that period and wonder what it must have been like for Emma. How odd it must have seemed to her, but she took it all in stride. There were a few exceptions, the days when I would sit outside her bedroom door during her therapy, leaning my head against the wall listening to her scream as she tried to leave the room, but the therapist would patiently tell her she could not until they had finished and I would cry, fighting the urge to let her out – all that separated us was the four inch wall of her bedroom. I remember feeling that everything I thought I knew as a mother – all my maternal instincts were useless.
Tagged ABA, Alternative Therapies, alternative treatments, Autism, autism & parenting, autism and parenting, autism and the family, autism children, autism spectrum, autistic, autistic children, autistic kids, children special needs, children with autism, children with special needs, DIR, DIR/floortime, kids with autism, Parenting, parenting an autistic child
“Does she ever point?” the evaluating psychologist asked us one day toward the end of another grueling session where Emma was suppose to play with a series of plastic ‘nesting’ cups. Emma showed zero interest in the nesting cups or, for that matter, in any of the other dozens of toys the woman had brought with her. Richard and I looked at each other and slowly shook our heads, no. “Is that important?” I remember one of us asking. “Yes, a typically developing child will always point to things that they are either interested in or want to know the word for.” I will never forget that instant as it became a defining moment in the evaluation. The evaluation that ended in a diagnosis of PDD-NOS when Emma was two and a half .
It had been only a month before – August of 2004 when Emma stopped speaking almost completely. She had begun to slide more and more into her own world which did not seem to include any of us. Her interest in anything ‘outside’ diminished. But she seemed to have a busy internal life, one that we were not privy to, nor able to share with her. I dealt with the diagnosis with my usual pull-up-your-boot-straps-let’s-figure-this-thing-out-and-fix-it attitude. I come from a long line of strong, independent women and this was the mode I fell into. The first thing to do, I thought, was find out what autism was. I had no idea, my only reference was a mixture of “Rain Man” and some books I had read as a young adult, which posited that the mother was ultimately to blame and that autism was the child’s emotional response to an unloving, controlling mother. Undaunted, off I went to the book store where I spent hours reading. The first book was about a woman living in New York City whose child was diagnosed with autism and so she adopted a vigorous program of ABA therapy, hired a young girl to help her and after a few years, the child was normally functioning and off to a main stream school. Another book recommended a casein/gluten free diet. I remember talking with one of Emma’s early intervention therapists who said she thought Emma would be mainstreamed by the time she was in kindergarten. I had it in my mind that we were in for a few tough years, but with perseverance and a great deal of hard work, we would see this thing through. I can do this, I thought and when it was all behind us, we would look back with a smile and say, “oh remember when..”
But ABA did not help Emma. She has a phenomenal memory and memorized all 400 of the ABA flash cards, but when presented with a similar object, one that she knew from the flash card – such as a blue t-shirt – yet if I held up a blue blanket or one of her blue shirts, she could not tell us what the color was. It became frighteningly clear that Emma could not generalize the information.
Back to the book store I went, returning home with an arm load of new books on autism.
What lengths would you go to if your child were diagnosed with autism?
This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another. A life that is enriched by our interactions.. this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.
Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified). Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.
Here are some of the therapies we have tried in the last five plus years:
Gluten/Casein free diet – no noticeable change after five months
Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.
Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.
Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.
Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.
Detox Foot pads – Pads that supposedly draw toxins from the body while she slept. No noticeable change after several months.
Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.
Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either. We discontinued after a few years when she began objecting to it.
Hyperbaric Chamber – We did not do more than 10 sessions. So I cannot comment on whether this may have helped or not. We discontinued because we were starting the stem cell therapy and wanted to do one over the other.
ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.
Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods. Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.
Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica
We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010. The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City. This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results. The stem cells were harvested from umbilical cord blood and mixed with her own blood serum.. They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday. She was sedated for all procedures. Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting. We were able to calm her with pain medication and by Wednesday evening she felt much, much better. We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine. She was also given a drug to reduce nausea. She rested in the hospital with us by her side for almost four hours. We have been told that we should not expect to see any significant change for a month or two. We will be returning to Costa Rica for round two in August.
Posted in Autism, Parenting, Stem-Cell Research
Tagged ABA therapy, Alternative Therapies, Autism, autism & ABA therapy, autism and parenting, autism children, autism therapies, autistic children, autistic kids, kids with autism, Parenting, stem cell treatments, stem cell treatments & autism, Stem Cells
Emma's Hope Book 