“It’s a horsey!” Emma exclaimed. Which doesn’t seem so bizarre, (okay so it’s a very thick horse with extremely stubby legs) until you see the rest of the picture…
Definitely not a horse. Does it have a head? Check. Does it have four legs? Check. Can it be ridden? Check. Then it’s a horse!
When Emma was diagnosed I threw myself into researching autism. I was determined to find out everything I could. I quit my job and devoted every spare second to reading books, trolling the internet for information, talking with specialists, etc. It was Richard who, one night said to me, “Ariane this isn’t healthy.”
“What are you talking about?” I said indignantly.
“You can’t even see it… this searching, every second spent reading about autism.”
I remember I was furious with him. Here I was devoting every second of my free time trying to help our daughter and he was telling me it wasn’t healthy?!
Richard took a deep breath and continued, “You have to go back to work, do something with your creativity. Do something that has nothing to do with autism.”
He was right. My life had lost all semblance of balance. And so I did. I found the career and creative outlet I had been looking for my entire adult life.
The summer after the diagnosis Richard was under tremendous pressure at work. I told him I would take the kids with me to stay with my mother in Colorado for a few weeks so he could have a break and not worry about showing up for the children and me. The point is we watch out for each other and we encourage each other to have some balance in our lives.
Early on we realized the importance of down time. Because with an autistic child, all the therapies, no matter which one works for your child, emphasize constant involvement with your child during their waking hours. I cannot remember ever, in the last six years, sitting down to read the paper without feeling a tiny tremor of guilt. I should be engaging Emma in some sort of “play” no matter how tired I am. In addition, not only are you suppose to interact with your child every waking moment, but you are suppose to interact with a child who often does not want to be interacted with. Despite this, you must pursue them or as Stanley Greenspan used to coach, seduce them. Add to the mix the lack of sleep, a full work week with all the stresses which come with owning several businesses and… okay you get the picture. It’s tough.
So Richard and I decided we each needed an evening out. We picked a night, mine is Tuesday, Richard’s Friday. On my night off I go out with a friend, see a movie or often, just stay at my studio and work late into the night. We also have a standing date night. It is sacrosanct. We have a caregiver booked for the same evening every week. Both of these nights have been crucial to the well being of our marriage and family.
Over a decade ago during a particularly difficult time in my life I took a walk along 23rd Street where I lived. It was a clear beautiful spring day and a single crocus had pushed its way up and out of a crack in the sidewalk, a single flowering plant amidst concrete. I remember thinking how strange it was I hadn’t noticed it before. After all it was right outside the front door of the building I lived in.
Last week, as I was taking Nic down in the elevator to catch his school bus, he was grumbling about Emma waking him up in the middle of the night. I reached over and affectionately tousled his hair.
“Mom! Stop fluffing me!” he said.
I smiled, “I am not fluffing you.”
“You’re trying to make me look like a daffodil,” he laughed, shoving his hoodie over his head.
And I thought of that crocus so long ago pushing up through the great expanse of concrete against all odds.
At a dinner party years ago someone asked each of us to use one word to describe our partner/spouse. When it was my turn I said, “Kind.” Richard is of course many things, but that is the word I still think of which sums him up better than any other.
I am a better person as a direct result of being with Richard. I am pretty sure he feels the same. We push each other to do the right thing. We encourage each other to stretch beyond what is comfortable. We challenge each other. I can say the same thing about both Nic and Emma. Each of them pushes me to show up in ways I could not have imagined. Each of them challenges me to dig deeper, to practice more patience, to stretch, to work a bit harder. Emma has taught me to appreciate seemingly insignificant things, a hug, a kiss, the unexpected laugh and my life and marriage are the better for it.
A few weeks ago a friend of mine, who is going through a stressful time in her marriage said, “Life is hard, suffering is optional.”
Being able to see the crocuses makes it a bit less so.
Posted in Autism, Marriage, Parenting, Siblings, Stanley Greenspan
Tagged Autism, autism children, autistic, autistic children, Marriage, Parenting
(*I have come to regret beginning this post with these statistics as I think it takes away from the main point. ALL marriages will inevitably encounter stresses that will place a strain on the best of marriages. It is not about blaming autism. It is life.)
The divorce rate of parents with an autistic child is said to be 80%. However I have found no studies to support this statement or even any articles showing where this seemingly arbitrary number came from. Challenges of any kind can strain relationships. As the parent of an autistic child in addition to the stress and financial strain, there are the legal hoops one must jump through to get ones child basic services with the Board of Education, the Board of Public Transportation, insurance companies, the lawyers, the hearings, the paper work and the sheer bureaucracy of advocating for your child. It is the workload equivalent to running a small business if not more. When you add the fact that many autistic children have disruptive sleep patterns causing further complications to a family already struggling to cope, you have a situation that will test the strength of any marriage, no matter how solid.
Richard and I have certainly had to weather our disagreements, though fortunately around the big issues: methodologies, treatments, our vision and hopes for Emma – we agree. I know of a couple of instances in which one of the couple just couldn’t cope any more and the diagnosis pushed them over the edge and out of the marriage. I remember early on after we had received Emma’s diagnosis I looked at Richard and said, “How are we going to get through this?”
Richard replied, “Together.”
And for us in many ways it’s that simple. (Though I need to be reminded of this from time to time.) We don’t do it alone. When I am having a moment usually in the middle of the night perseverating on some worry about something I have little control over or which simply hasn’t happened yet – will Emma ever live independently or who will take care of her when we die or will she ever be able to read and write or will she need tens of thousands of dollars worth of dental work because she still sucks her thumb (yes) or will she ever be out of diapers (these are a few examples from my current playlist) or any number of concerns ricocheting around in my head like a pinball, Richard will reassure me, “It’s going to be okay, we’ll get through this.” There are times when I feel as though I am trying to claw my way out from a dark abyss of fear that ambushes me, pulling me down. Richard and I have a kind of short hand for this.
“You’re spinning out,” he’ll say after listening to me for a while.
“I know,” I will reply and I do know. The knowledge doesn’t help me stop myself.
And then he talks me down or if that fails, because I can be stubborn, he will listen a while longer before finally interrupting me with, “Okay, my turn. You’re totally out of control.” His is the blunt, direct approach. It can be quite productive. He will then go on to point out why my thinking is deranged. 90% of the time I can listen to him and calm down. Richard has his own version of spinning out, but it’s usually work-related. Which isn’t to say he doesn’t worry about Emma or Nic, he does, it’s just he is better at having some perspective on them and doesn’t get as easily thrown into the “doomsday pit” of despair.
When Emma is having a melt down, which can go on for quite some time, we pitch hit. One of us will try to soothe her and when the other sees it isn’t going well – our patience is fraying – the other will jump in. Most of the time one of us is able to maintain a calm the other is lacking. Of course this leaves poor Nic fending for himself. Though Nic, too, has gotten quite adept at calming things down. “Here’s what you guys need to do,” he’ll say, looking up from his latest drawing of some fanged, blood dripping, all powerful monster. “You can’t let her get away with this. She won’t stop and she needs to learn she has to stop.”
Richard and I look at each other with raised eyebrows.
“You need to choose the thing that’s most important and work with her on that first. Because otherwise it’s just too much,” he’ll add.
Smart kid. (A post devoted to siblings of autistic children next week.)
I am lying in bed reading.
Emma comes running in looking for me. She stops when she sees me. Huge smile. In her hand she has two pieces of what are left of her blanket she calls“cokie”. She drapes the smaller piece on my arm and says, “That one Binky, mine! Ohhhhh!” She runs to the other side of the room.
“Emma!” I say in an animated voice. “Are you letting me have your cokie?!”
“Wait a second. That one cokie,” she says holding the larger piece of her old blanket in her hand. She jumps up and down.
“Is this piece mine?” I ask.
“That one Binky. Awww…” She says in her sing-songy voice.
“I have Binky and you have Cokie?” I ask.
Emma twirls around holding her blanket. “What’s boy?”
I put my ipad away and sit up. “What is boy, Emma?”
Emma seems to not hear me. “What’s ee- day? Boy gone. Yes!” She says while continuing to twirl in place. “Booooooy..” She says the word as though it were several syllables. Her voice rising in the middle of the “o” sound and coming down at the end, stretching it out, playing with the sounds. She pauses and stops twirling. “Ee-day is gone.” She begins to twirl again.
“Who’s ee-day? “ I ask.
“Ee-day move away. Ee-day is gone.”
“Emma, do I know ee-day?
“Ee-day move away.” She begins to jump up and down. “That’s right. Boooooy, ee-day gone. Ee-day is gone. Ee-day is gone.” Emma stands still and continues twirling a piece of her hair around her finger. “What’s watch your finger? What’s boys? What’s watch your? What’s watch, wash your finger?”
“Are you saying watch or wash, Emma?”
“Booooy – wash your finger’s gone,” Emma sings the words.
“Emma, is it wash – like washing soap or watch, like you watch Elmo?”
Emma says nothing. She stands still with her head cocked to one side and twirls the lock of hair. Twirl, twirl, twirl. She stares at the piece of hair as she twists it around.
“Or are you saying watch out!” I ask.
Emma looks at me, “WATCH OUT! WATCH YOUR FINGER! BE CAREFUL!!” She shouts while jumping up and down. Then she begins to laugh.
“Did someone at school tell you to watch your finger because it might get caught in something?” I ask.
“You have to be careful. Watch your finger!” Emma says. She runs over to me and yanks away the piece of her blanket still draped on my arm. She runs away and then comes back and gently places the scrap on my head. “Ahh, it’s your Binky.”
Earlier that day Emma was taking a shower. “Emma make sure you use the soap,” I tell her.
She dutifully washes her body with soap.
“Now make sure you rinse your body off.”
Emma stands just to the side of the spray, soap covering her.
“Wash the soap, Emma,” I say.
Emma holds the bar of soap under the water.
Okay, that makes sense, my mistake, I think. “No not the bar of soap, the soap on your body,” I explain.
Emma moves under the spray and proceeds to wash the soap off of her body.
I don’t know what Emma hears or what goes on for her when she is being spoken to. I do know she takes things literally, as when I told her to wash the soap, meaning wash the soap off her body. Often, as in the first conversation, Emma seems to be working through something, though it’s not clear to me what. Either that or she likes the sounds and is playing with the sounds of the words and their various meanings. My guess is there is much more going on than I am able to figure out. I am almost always perplexed by Emma’s language. It is foreign to me and while I am learning to speak a little of it, I have a long, long way to go.
Posted in Autism, Parenting, Speech
Tagged Autism, autism & parenting, autism & speech, autism and parenting, autism children, autism spectrum, autistic, autistic behavior, autistic children, autistic kids, children with autism, kids with autism, living with autism, Parenting, parenting an autistic child
A number of people contacted me regarding the documentary – A Mother’s Courage – the documentary about an Icelandic woman’s search to help her autistic son. The documentary tracks the journey of a mother who interviews many and eventually goes to Austin, Texas where Soma Mukhopadhyay has created the Halo Clinic. Soma is the mother of a non-verbal autistic child, Tito. (Tito is no longer a child.) Soma developed a program, Rapid Prompting Method, to teach her son to read and write. Tito has gone on to write several books, despite being non-verbal.
Joe, Emma’s therapist and I drove out to the Bronx this past Saturday where Soma was leading a workshop. Soma described RPM as a method to “empower the student and express himself.” Soma’s method takes a non-judgmental view of self-stimulatory behaviors. She believes they are clues that can help us interact and teach the autistic child. Soma never once implied nor does her website that her method is a “cure” for autism. RPM is a means by which autistics can learn to communicate.
For those of us who parent an autistic child, that is an amazing and wonderfully hopeful prospect. There is not a day that passes when I do not have the thought – I wish I knew what Emma was thinking. I wish I had a window into her world. The idea that Emma might one day be able to read and write is something I have hardly dared to wish for.
Toward the end of the workshop, Soma’s son Tito wrote on the large pad of paper Soma had propped up on an easel: “I think you are talking too loud.” Soma had been speaking into a microphone. She held the microphone to his mouth so he could hear how he sounded as he made a noise into it. It was a light hearted moment, a moment of a teenager commenting on his mother.
Tito writes in his book – The Mind Tree: “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being – ready to grow together.”
I have ordered Soma’s book describing in detail her Rapid Prompting Method. I am guardedly optimistic.
For more information on Soma and her work with her son Tito, go to: www.halo-soma.org
Posted in Alternative Therapies, Autism, Parenting
Tagged Autism, autism & parenting, autism & speech, autism and parenting, autism and the family, autism children, autism spectrum, autistic children, autistic kids, children with autism, kids with autism, language, literacy, living with autism, parenting an autistic child
Emma can be very strict. She is a stickler for rules. Merlin (see yesterday’s post) is not supposed to jump up onto the counters or dining room table. If he does, Emma shouts, “Merlin! Get down!” Even if he hasn’t jumped up on the counter (yet) Emma will remind him, “Merlin! You may not get up on the table.”
If we have a vase of flowers on the dining room table Emma will repeatedly warn Merlin (whether it applies or not) “Merlin, kitty, you cannot eat the flowers!” Then she’ll laugh.
These are all things she has heard us say at some point and Emma is a terrific mimic. She will not only repeat the things she hears us say, but she will mimic the tone. There’s a word for what she does. It is – echolalia – common among autistic children. Echolalia is the parroting or echoing of sentences and phrases heard. Emma does not make the sorts of linguistic mistakes commonly heard in young children. She does not say things like – I bringed it to her – something often heard from young neuro-typical children as they try their best to navigate the English language. On the other hand Emma will say – Bye Emma! When saying good-bye to someone, whose name is definitely not Emma. It is what she hears them say to her when they or she is leaving. Why would she say anything else!? To Emma “Bye Emma” means a parting of ways. Or, as in the case of a dinner party we had a few months ago, Emma felt it was time for everyone to leave, she announced – “Dinner is all done! Bye Emma!” When our guests, understandably confused, said, “Oh! Are you going now?” but did not themselves show any sign of leaving, Emma began bringing them their coats, saying, “Bye! Bye Emma!” while vigorously waving her hand good-bye. Needless to say she cleared the place out within minutes, despite our reassurances that it was not time to go yet and wouldn’t they like to stay and have some coffee or tea.
For Emma, however, we had eaten, she had patiently waited while this occurred. She knew there would be dessert after which she would be allowed to blow out the candles on the dinner table while singing “Happy Birthday” (Any party is a birthday party and remarkably some guest almost always is about to have or has just had a birthday – so it confirms Emma’s ‘party = birthday party’ theory.) Once Emma has sung Happy Birthday, usually several times and with all of us joining in for the third or fourth “last time” rendition – it is time to go to bed. Emma has a difficult time understanding that we may not be ready for bed. We may want to move into the living room to talk, have some tea or coffee and enjoy each other’s company. This, for Emma, is not how it should be, it is her bedtime now and so it should be everyone elses too. This sort of flexibility does not fit into her “rules”. The guests should leave and if they do not, then Emma must remind them.
When Emma was beginning to talk she did not say single words, but whole sentences. See previous post – “Emma at Ten Months Old”. As Emma grew older, she would repeat things she heard others say. But the things she latched on to were things said with a great deal of emotion, or, as Stanley Greenspan used to say, “high affect”. Sometimes these comments were in context, but other times they were arbitrary. A dear friend of mine who has two children just a bit younger than mine admonished her son in the playground one day while we were there.
“Rogan NO!” She shouted, as her son dashed toward the gate leading out onto 10th Avenue. Emma, for the next four years mimicked her in all sorts of situations. Often it was when she wanted to go somewhere, but knew she shouldn’t, but just as often it was arbitrary. Emma would shout, “Rogan NO!” Sometimes she would add “You have to come back!” And sometimes she would just use the short hand version “NO!” But we knew from the way she said it, the tone she used who she was mimicking. She had captured the voice perfectly. A few years ago we ran into my friend with her children in the park and Emma upon seeing her, immediately said, “Rogan, NO!” Fortunately my friend has a good sense of humor and didn’t take offense.
Emma does the same thing with another friend of ours.
“Jack!” Emma will shout in a stern voice. Then “Jack! Jack! Jack!” Said in rapid succession. She captures the child’s name and the anxiety ridden pitch perfectly. At Nic’s birthday party a few years back, Emma, upon seeing Jack’s father, started shouting – Jack! Jack! Jack!
“I guess that’s how I sound, huh?” The father said, looking slightly embarrassed.
How to explain?
For Emma, rules help her cope in a world run riot. Rules provide sameness and from that, Emma derives comfort. Though Emma has been known to question some of the rules she does not like. “We cannot make pancakes,” Emma will say, knowing it is a school day. She hopes maybe we will make pancakes anyway and this is as close to a question as we often get. But once confirmed, “No we cannot make pancakes this morning. It’s Wednesday,” one of us will say, Emma will begrudgingly accept this. It is our rule after all.
“Sleep, wake up, sleep wake up, sleep wake up, pancakes!” Emma will respond.
“Yes. That’s right. Pancakes on Saturday and Sunday.”
“Make pancakes with Mommy?” Emma will say with a sly grin, trying one last time to see if this ‘rule’ can be suspended if for only one day.
“Pancakes with Mommy on Saturday. Today is Wednesday.”
“Okay,” Emma will say.
Posted in Autism, Parenting, Speech, Stanley Greenspan
Tagged Autism, autism & parenting, autism & speech, autism and parenting, autism and the family, autism children, autism spectrum, autistic, autistic behavior, autistic children, autistic kids, children special needs, children with autism, children with special needs, echolalia, kids with autism, language, living with autism, Parenting, parenting an autistic child, rigidity, Stanley Greenspan
Early on I knew if I wanted to have a relationship with Emma I needed to enter her world as much as possible. I tend to project – feelings, thoughts, abstract concepts – none of which are helpful. Emma’s world does not include the kinds of “feelings” I tend to apply.
For example, upon much urging from Emma, we adopted a cat last November. Emma rarely expresses a desire for things and so when she began asking to go to various animal shelters and saying, “Now take kitty home,” we felt we needed to oblige. We went to a rescue shelter together and after about three hours left with Merlin, a black male, just under a year old. I know Emma enjoys Merlin and is glad we brought him home. She stopped asking to go to animal shelters or the pet store. So whatever it was she wanted from having a cat of her own, Merlin has accomplished. Yet it remains a mystery to the rest of us as to why she was so insistent on having a cat. Particularly as now that we have one, she seems content that he has been brought into the fold, but by no means appears enamored by him as the rest of us have become.
If Merlin is sleeping in his favorite spot – the rocking chair – the single most coveted piece of furniture in our home, Emma will simply tip the chair over until he falls out. Nic is horrified by her matter of fact actions and always cries out – “Poor Merlin! She’s doing it again, Mom.”
Having removed Merlin, Emma then plops down into the rocking chair and proceeds to happily suck her thumb. We attribute all sorts of “feelings” to her actions. She doesn’t care about Merlin. She doesn’t love him as we do. And in Nic’s case – he feels she is “mean” to Merlin. But to Emma, Merlin is occupying the place she wants to be and so he must be removed. It’s pretty simple. I don’t think she is thinking of Merlin’s feelings. My guess is she cannot understand why the rest of us react the way we do. “Poor Merlin!” we say and now she laughs and tips the chair at an even more precarious angle.
When Emma “plays” with Merlin she will whip his toy around her head, rather than try to engage him in play. His toy is interesting to her, but the idea that it is his toy and one to be used to play with him is something Emma doesn’t seem to understand. If one considers that “playing” for Emma is an abstract concept, one she does not come to easily then all of this starts to make more sense. And yet, Emma continues to surprise us. There are times when Emma clearly is playing with Merlin and enjoying it. She will grab one of his “mice” which is attached to a string and run through the house, the mouse rocketing along behind her with Merlin hot on her heels. She squeals with laughter as do I while watching her. Emma is taking pleasure in something she loves to do – running – but is also taking pleasure in Merlin running too. It suggests an awareness of “other” which denotes tremendous progress.
Friendships with her peers are not easy for Emma. They are something she needs help with. I believe she desires the interactions, but people are unpredictable, particularly young children. Her head teacher recently sent home this photo of Emma holding hands, (unprompted by any adult) with her classmates while out on an outing. It is wonderful to see. (In this photo Emma is wearing a weighted dress, which her school encourages her to wear, as it calms her.)
Emma has a number of “friends” now, much to our pleasure and dismay. But Emma does not play with her friends as a neuro-typical 8-year-old girl would. There are no whispered “secrets” or friendship bracelets being exchanged. She clearly cares deeply for a number of friends, but when they are thrown together she isn’t always sure what to do with them. Her “best” friend is an adorable little boy named Ben and they often sit together during lunch, sometimes even hold hands. I cannot begin to express the joy it gives me to know that Emma has a special friend, one whom she looks forward to seeing and wants to sit next to. How she feels, what she thinks, I cannot begin to know. What does “friend” mean to her? I do not know.
In order to know Emma, one must try to toss aside any preconceptions about intent or feelings. In fact, I have learned over the years, I must put aside all of what I think I “know” about human behavior and enter a state of “what is”. “What is” = my description of Emma’s mind. There is no “good” or “bad” – it simply is. If one has ever attempted meditation one will know how difficult it is for most of us to enter a state of non-judgement. A state of just being present. People spend thousands of dollars and years of their life attempting to gain mastery over this “practice”. Emma comes to it naturally.
Most Sundays we all play around the house until noon and then Ariane will do something with Nic while I take Emma on an outing, usually to the “big park” – Central Park. Emma knows what she likes and likes her routines, so most of the time our forays are predictable, except when I try to mix things up deliberately just so she doesn’t get too OCD about it. In the Spring, Fall and Winter months, the routine begins with a visit to the “big carousel” followed by the zoo, the children’s zoo, FAO Schwartz and the Apple store. Sometimes we start with a trip to the Natural History museum and then do one or two items on the other itinerary.
In late Spring, Emma will begin talking about how “the ice skating’s all gone…ice skating over”, in a very sad voice with a very concerned frown. In truth, she’s much more excited than sad, because she can’t wait for Memorial Weekend when an amusement park opens up where the ice skating rink used to be. It’s called Victorian Gardens and Emma has been talking about it and going over to the rink to see if it’s open every weekend for the last month.
Hooray! It opened this weekend and she went on Saturday with Lee and Sunday with me. We spent a few hours there and then we changed into her bathing suit and went to one of the playgrounds inside the park that has a nice sprinkler and a series of little pools she can sit in. We spent a couple more hours there, Emma playing in the water and in the sand and climbing and sliding.
When it was time to go home, Emma did a really good job of rinsing the sand off as soon as I asked her to – something that used to be incredibly difficult to get her to do without a complete tantrum. On the way to the train we stopped for a snack and sat on a park bench. While she was sitting there, happily munching away on her Pirate Booty, she pointed to a butterfly and said, “butterfly.” She pointed again when a woman walked by pushing a carriage and said, “baby asleep in the stroller.”
This is the second weekend in a row that she has pointed repeatedly at different things and labeled her sightings. I’m sure this won’t seem very significant to most people, but it was her lack of pointing and labeling that finally ‘clinched’ her diagnosis with ASD and cut through our last shred of denial. To see her pointing at things while looking at me for my reaction fills me with great joy – and hope.
Years ago we started a diary book that we called Emma’s Hope Book, where we listed every little advancement she made as a way to focus on the positive aspects of her recovery and to bolster our spirits as we repeatedly slid into despair at just how slow her progress has been compared to normal children her age. “Compare and despair” is a recipe for hopelessness and so we still cling to every new achievement as a victory flag placed on top of a mountain.
Emma’s Hope Book is alive and well here (and now open to the public) and more than ever does it serve it’s intended purpose for us – to cut through the other side of our denial — our denial of her gradual but indisputable progress. She is getting better, slowly but surely, more slowly than we would want of course, but moving forward one day at a time. We have hope – and the evidence documented on these pages – that she is getting better a little bit at a time, day after day.
(Showing Emma this photograph)
A: Hey Emma! What do you see?
Em: He putting on the sprinkler.
A: Who’s “he”?
Em: He putting on his feet in the sprinkler.
A: Who is that?
Em: Emma. Emma putting he feet in the sprinkler.
A: Her. Her feet in the sprinkler.
Em: Her.
A: You’re putting your feet in the sprinkler.
Em: Yeah.
A: Was that fun?
Em: Yeah.
(I show her this photograph)
Me: What about this? What’s going on in this photograph?
Em: Dr. Halper.
Me: What’s he doing?
Em: Just Toni Karlsrud.
Me: Is that Dr. Karlsrud?
Em: Nooooo! (Laughing) Dr. Halper.
A: What’s happenig to you?
Em: (Touching photograph.) Goes beep, beep, beep, beep.
A: You’re having a QEEG done. It measures your brain waves.
(Emma gets up and walks away.)
A: Emmy! Come back!
Em: Where are you going?
A: Emmy! Come back!
(I follow her into the other room where Richard is.)
A: Hey Em, do you know why you’re having a QEEG done?
Em: Now goes beep, beep, beep… (while she says this she is touching various points on her head where the electrodes are placed.) beep, beep, beep, beep… (she touches her arm) beep.
A: They don’t put one on your arm!
Em: (Laughs) Beep!
A: Do you know why this is being done to you?
Em: Beep, beep, beep, beep.
A: It’s looking at your brain. It measures your brain waves.
Em: Beep, beep.
A: Do you like going to see Dr. Halper and having a QEEG?
Em: Yeah!
A: Should we go pick out what you’re going to wear today?
Em: Yeah, sit for one more minute.
A: Okay.
This photo was taken a few years ago at the local bookstore near where we live. Emma has never shown much interest in books. When she was a baby she would squirm and wimper when I tried to read to her. As she grew older, she allowed me to read to her as long as she was able to hold the book and turn the pages. Often she didn’t wait for me to finish reading before turning the page. Much the way she flips through photographs, so quickly it’s hard to believe she is really able to see what and who are in the photo, she does the same with books. I often wonder if Emma sees in patterns. In other words, her brain picks up the entire scene and creates an instant pattern, allowing her to “see” the image instantly, any variation is immediately recognized. I don’t know that she sees in this way, but I wonder.
Years before this photo was taken, I took Emma to the bookstore. She couldn’t have been older than three. She wriggled out of the stroller and ran to the back of the store. We hadn’t been inside this particular bookstore for at least six months. I followed Emma, calling out to her, “Emmy, where are you going?” As was typical, she ignored me and kept running. To her left was a floor to ceiling bookcase, filled with large picture books. Emma attempted to scale the bookcase.
“No! No! Emma!” I cried. “You can’t climb that. What do you want?”
Emma jumped up and down, making noises.
“Is there a book you want to see?” I asked, looking at the shelves for a familiar book, which she might like. Emma doesn’t like new books. Whenever we are in a bookstore and I offer a new book, one that she hasn’t seen before, she shakes her head no. Then goes over to a book she knows and pulls it from the shelf and hands it to me. A few of her favorites: “Chicka, Chicka Boom Boom”, “Gossie”, “Gossie and Gertie”, “Brown Bear, Brown Bear” etc. On this particular day she wasn’t interested in any of those books. She was determined to climb the book shelf. I picked her up, bringing her close to the books so they were in her reach. “Do you want any of these?” I asked. Emma reached above my head, so I lifted her higher.
On the second to highest shelf, at about seven feet tall, Emma pulled a single book by it’s spine down from the shelf. “Is that what you wanted?” I asked. I set Emma down on the floor with her new book. The book was “Go Away, Big Green Monster!” I had never seen the book before. As I stood watching Emma flip through the pages, reciting each and every word, I felt a chill. It was eerie. Where had she seen this book? Who had read it to her? She knew every word of that book by heart and spent the next hour “reading” it over and over again.
When we returned home (with the book) I related to Richard what had happened. “It was bizarre, ” I said. “I mean have you ever seen this book?”
“No, really weird,” he said. “Maybe one of her therapists has it.”
“But she never lets them read to her. And how did she know where it was in the bookstore? She ran straight to it. The therapists don’t take her outside.”
“I don’t know. It’s really strange,” Richard said, looking at me.
“It was the only copy, Richard. She knew it from it’s spine. It wasn’t like it was out on display. And I haven’t taken her to that bookstore in months. She immediately knew where to find it.”
During the following weeks I asked everyone who came in contact with Emma, but no one had read her or lent her the book.
After a few months I stopped trying to figure it out. To this day, I have no idea how she found that book, or even knew of it’s existence. It remains one of the many unsolved mysteries of Emma’s mind.
One of the things I realized early on in my search to help our daughter was, there are a number of people who believe they know what causes autism and many more who believe they can cure it. There is also a tremendous amount of money to be made from desperate parents, like myself. I cannot tell you how often I took Emma to an alternative “healer” who claimed, if I just kept going and paying them their enormous fee, Emma would be cured. I do not believe these people meant to deceive, I think they really have convinced themselves their method will cure a child and if it does not, it is because we didn’t give it enough time.
In many ways Bruno Bettelheim’s refrigerator mom is alive and well even if it has taken on a new twist in today’s world. While no one came right out and said – You are to blame for her autism (and to blame if whatever method they were pushing didn’t cure her) – it was inferred by the questions they asked. What follows is a sampling of a few of the questions I have been asked over the years.
Did you drink caffeine during your pregnancy?
No.
Did you or do you drink alcohol?
No.
Did you take any sort of medication during your pregnancy or labor?
No.
None?
No.
What about aspirin?
No.
Did you sun bathe?
No.
Did you have an epidural during labor?
No. No drugs, natural childbirth.
How long did you breast feed?
9 months.
Just nine months?
Yes. Emma didn’t want to breast feed, she weaned herself. I wasn’t going to force her to breast feed when it clearly distressed her.
Ahhh… Did you eat fish?
A couple of times.
What kind?
Grilled swordfish. I didn’t know about the mercury levels in fish when I was pregnant with Emma. It was only a few times when we were in Cape Cod.
Uh-huh…
There it was, finally, the answer they were waiting for. Depending on the practitioner, the questions changed and as a result, my answers, but there always came a point when I gave the “wrong” answer. It always ended the same way with the same look – eyes downcast, a slight sad shake of the head. I came away from these ‘interviews’ feeling angry, but I also wondered if there was any truth to it. Maybe the two times I ate grilled swordfish while we were in Cape Cod, really was enough to cause her autism… I think as a mother, it is second nature to wonder if something one did during pregnancy horribly effected the baby. To this day I feel tremendous guilt for having unwittingly eaten swordfish during my pregnancy with Emma. I honestly did not know how toxic our oceans had become.
I have become particularly wary of those who are adamant autism is caused by any one thing. My guess is, it’s multi-causal, but who knows? I am also wary of those who speak with absolute assurance they know how to “cure” autism with diets, behavioral therapies and alternative remedies. Autism is a neurological disorder and while all of these things may play prominent roles in children getting better, I have yet to meet a child who has been cured, in fact, I have yet to meet anyone who has met a child who has been cured.
Posted in Alternative Therapies, Autism, Parenting
Tagged 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, kids with autism, living with autism, Parenting, parenting an autistic child
Every year when Mother’s Day rolls around I think about buying a trophy for Ariane. But if you’ve ever seen the kind of “World’s Best Mom” statuettes they sell in gift shops, you’ll understand how easy it becomes to resist that impulse. To do full justice in honoring her ceaseless sacrifices, her boundless commitment, and her indomitable courage in the face of repeated heartbreak, I’d have to commission a giant gold statue of her in full Viking Goddess mode, hair blowing in the wind, fist outstretched in an upward and onward call to arms as she stands atop a mountain of diapers, empty vanilla milk cartons and pancake batter, Emma perched on her shoulder with her thumb in her mouth, her other hand clutching her blanket Cokie as it flutters behind them like a triumphant flag.
Maybe next year. God knows she deserves it.
It’s hard being a mom. It’s hard being a mom for a normally developing child. Harder still raising two normally developing children, which is what we both thought we were doing in Emma’s first year of life. She logged in countless hours in countless playgrounds, bookstores, zoos and museums – with more than a gazillion trips to the Museum of Natural History alone — which Emma still calls the Snakebite Museum because she obsessively goes up to the third floor on each visit to see the diorama of a boy laying on the ground that’s been bitten by a snake.
And it’s hard…really, really hard…to be the mom of an autistic child. It’s hard being the dad of an autistic child too, but not as hard as it is for Ariane. For one thing, Emma can only bond physically with one person in the world, and that’s mommy. She might sit next to me, or lay in bed next to me, but we can’t cuddle. She likes to stroke my arm and she really likes to slap it. But I cannot hug her for more than a few seconds, I cannot hold her in my arms, I cannot sit with her in my lap in the rocking chair, not for long anyway.
She is not daddy’s little girl. She is mommy’s little girl. And along with the joys of that affection comes a world of responsibilities that are extremely difficult to bear when they rest on one person’s shoulders. Only mommy can comfort Emma when she stubs her toe, or gets a cut. Only mommy can hold her and say, “It’s okay.” I cannot count how many times I’ve run to Emma’s assistance when I’ve heard her screaming, only to have her run right past me and into mommy’s arms. And when Ariane is out of the house and she injures herself, there isn’t much I can do but try and calm her while I get a bandaid.
This next part is difficult to talk about, but I think it needs to be said in order to fully appreciate what this has been like for Ariane. Emma has only been able to poop in the toilet by herself for the last year. She has had chronic constipation we have tried everything to relieve for as long as I can remember. Ariane, being the only one who could really hold her, had to hold her on the potty while Emma screamed in agony, trying to relieve herself. This could go on for more than an hour. Every day. For years. Think about it. Now add to this the fact that Emma screams louder than a jet plane on takeoff. Nuff said.
Mothers of autistic children have to cope with another burden that never seems to fully go away, not that I’ve seen anyway. Guilt. Ariane is not alone in this respect, every mother of an autistic child that I’ve ever spoken to about this has said pretty much the same things: “I shouldn’t have eaten so much fish when I was pregnant. Or exercised. Or done those leg lifts the midwife told me to do because they said she was breached – and she wasn’t. I shouldn’t have gone down to the World Trade Center after they blew it up and all that smoke was in the air. I was too old to have another child. That’s what did it. That’s what made her this way.”
I’ve never heard the father of an autistic child wring his hands over his role in ‘causing’ their child’s autism, even though some studies have said that one possible factor in the disease is the age of the father, not the mother. But the mother bears the child and that seems to lead to countless recriminations and self-blame that doesn’t even end after the child is born. “I shouldn’t have given her that MMR vaccine. I shouldn’t have given her any vaccines.” And so on.
I once said to Ariane, “If you were talking to another mom with an autistic child, would you blame her? Would you tell her it was all her fault?”
Of course not. But I wonder how much these thoughts have faded even after all this time.
As soon as we got the diagnosis, Ariane must have read every book on the subject. While I consider myself to be a pretty good dad, equally concerned and committed to healing our daughter, I have still never read a single book on the topic, not cover to cover. Maybe I’m just being a guy, but my initial response was to Google everything I could discover about possible causes and treatments in the most concise descriptions possible. I couldn’t take the pain of all those details, of all those suffering voices. “Bottom line it for me.”
Ariane tried every possible treatment she had heard about on the internet – from other mothers, of course. She has documented many of these efforts on these pages. For example, she mentioned here that she once baked a casein-free/gluten-free cake for Emma’s birthday that took her hours and hours to make. No flour, no yeast, no dairy, no sugar. I couldn’t believe how good it tasted. “What’s in here, fairy dust?” I asked, reaching for a second slice.
Emma never took a single bite of it. That trophy I was talking about should have been awarded for this feat alone. I might have to commission one after all.
Happy Mother’s Day Ariane. I love you. Nic loves you. Emma loves you.
You are amazing.
Posted in Alternative Therapies, Autism, Gastro-Intestinal Issues, Parenting
Tagged Autism, autism & parenting, autism and parenting, autism and the family, autism children, autism spectrum, autistic, autistic children, autistic kids, children with autism, Constipation, Gastro-Intestinal problems, GI issues, kids with autism, living with autism, Parenting, parenting an autistic child
We took Emma and Nic to a center specializing in hearing tests. The tests for Emma came back negative for hearing loss, though the center did recommend hearing therapy for Nic. Nic was sensitive to loud high pitched noises, like the fire truck’s sirens from the fire house across the street from where we lived. He would run away from the sound covering his ears and crying. Emma didn’t seem bothered by noise, in fact, Emma seemed to enjoy noisy situations, loved parties, the more, the merrier, it seemed. Up until we received the results from the hearing tests I convinced myself this was the crux of the problem. I remember telling my mother about a book I’d read regarding hearing loss and how it can lead to a variety of behavioral problems. Surely this was what ailed Emma.
When the hearing tests came back negative, I had to modify my thinking. Okay so her hearing was fine, this was good news, right? It didn’t feel like good news.
We set up an evaluation through Visiting Nurse Service of New York. VSNY is a not-for-profit organization providing health care in New York City. There were pages of paperwork to be filled out prior to the evaluation.
Some of the questions were:
Does your child look at or turn to sounds?
YES!
Does your child respond to favorite people, making happy sounds or smiling?
YES! She’s very happy with a jubilant, infectious laugh.
Does your child imitate you when playing a game, such as peek-a-boo?
YES! Another bull’s eye. Maybe things were going to be fine after all.
Does your child engage in “make-believe”, such as playing with a doll or truck or playing house?
Okay, no, but she’s not interested in dolls, she’s more of a tom-boy. She likes to run around and be outside.
Does your child indicate when she wants something?
Well no, but Emma never seems to want anything – so it’s not applicable – right?
Does your child interact with peers?
No.
Does your child use one or more words to ask for what he/she wants?
She did… sometimes, okay, not often. She said “chase me” when she was about 16 months old, but as her language regressed, “chase me” went the way of all the other phrases – into the great abyss.
Does your child look up when you call to him/her?
Well, no.
And so it went. Each question – like a nail being pounded into a plank – shutting out the possibility she was going through some sort of freakish delay which would right itself if left alone and not questioned.
For more information on Visiting Nurse Service go to: www.vnsny.org
For more information on Emma’s evaluation see earlier posts: The Beginning and Hug Witness.
I sat in the pediatrician’s office with Emma squirming on my lap. “She’s not really talking. I mean she says words grouped together, but not single words.”
“Like what?” the pediatrician asked.
“Ba-bye, Da-da, Ah-done… things like that.”
“Smart kid,” the pediatrician said, checking Emma’s reflexes.
“So there’s nothing to worry about?” I asked.
“She looks great,” the pediatrician laughed, as Emma scooted across the room one leg jutted out in a crab-like crawl.
Thirteen Months
“So I shouldn’t worry, right?” I asked the young master’s degree student, studying speech therapy, who was Nic’s ‘teacher’ at his pre-school.
She nodded, “Some kids, especially the ones who are more athletic often have delayed speech.” She looked at me with a smile. “And her brother is pretty precocious, sometimes their younger siblings are slow to speak. I’m sure it’ll come in time.”
I was turning into one of those neurotic New York moms. It was classic. I needed to stop worrying, Emma was fine, I told myself as Nic and I walked home from his pre-school.
Twenty-two Months
“Do you think she might have a hearing problem?” I asked my girl friend.
“But she looked up when that siren went by,” she reasoned.
“Yeah, I know,” I said, watching Emma push an empty swing. “Watch this. Hey Emma!” I called out.
No response.
Louder, “Hey Emma!”
Nothing.
Now shouting, “Emma! Emma! Look at Mommy!”
But Emma continued to play with the empty swing.
“Okay, but half the time my kids don’t look at me when I call them either. Kids do that,” my friend said. “Don’t they?” She looked at me with half a smile. “Anyway who wouldn’t be mesmerized by that swing?” she added, putting her arm around me and giving me a squeeze.
Thrity-One Months
“When was the last time you heard Emma say, Chase me?” Richard asked.
I thought for a few seconds. “When was the last time you heard Emma say anything?” I asked in answer.
This was the conversation that poked the final hole in my bubble of denial. It was August and we had rented a house in Cape Cod. I remember standing in the living room, looking outside, watching the children. Nic and Emma were on the porch in their ‘swimming pool’ a make-shift plastic tub we’d filled with water.
The mask I had so meticulously constructed for myself and my family fell away revealing something I couldn’t identify and could not understand. I remember telling myself to breathe through the rising panic that threatened to consume me. And then I remember feeling the feeling that I would feel many times in the ensuing years. Failure. Something was terribly wrong with my child and I had failed to see it, failed to do something about it.
As often happens when I feel overwhelmed, I began to make a mental list of actions I would take the instant we returned to New York. The first two items on my list were: get a hearing test done and get an evaluation.
One of my girlfriend’s and I decided to enroll our daughters in a Mommy & Me class at the Children’s museum. Emma was walking, so it must have been when she was about eighteen months old or so. Our daughters were born four weeks apart and it was a way for us to see each other in a city where one routinely must make appointments months ahead to see even close friends.
During the first class Emma became fixated with the guitar, which the young woman who was leading the class played periodically through out the hour and fifteen minutes. When Emma wasn’t trying to grab the guitar out of her hands, she was dashing up the wooden ladder, crawling through a series of tunnels and sliding down the inflated slide, over and over and over again. Meanwhile my friend’s daughter was listening to the stories, happily creating all sorts of “art”, interacting with the other children and seemed content to go along with what was being offered. I laughed it off at the time, but I remember on the subway ride home feeling ashamed and lonely. They weren’t feelings I could logically explain. I mentioned to Richard when he returned home from work in the evening that Emma didn’t seem to like the mommy and me classes. Beyond that I was unable to put the feelings into words. I just felt an inexplicable heaviness.
As was typical, I persevered, hoping she would grow out of it, whatever “it” was and kept showing up for the weekly classes that spanned three months. While other children seemed to develop relationships with one another, albeit rudimentary ones, Emma continued to show no interest in any of the children or adults, for that matter. I remember clinging to the idea that she was independent. Looking back to that time, even now, is painful. I realize we were in limbo, a sort of odd “in between” place which I was unable to recognize, much less express.
Emma's Hope Book 