Tag Archives: parenting and autism

Sunday in Williamsburg with Emma

After Nic and Emma had their gymnastics lesson Sunday, we dropped Nic off in Williamsburg, taking the “blue A train with yellow and orange seats” much to Emma’s delight, (while disproving my theory that she prefers taking trains with corresponding seat colors) so he could spend the afternoon with a friend of his who lives there.  Richard, Emma and I originally had planned to go to the Metropolitan Museum, followed by a stroll through Central Park before ending up at the zoo, as per Emma’s request.  However it was suggested we walk to the East river and visit the thriving Williamsburg flea market before heading back into the city.

The day was lovely and as I’d never spent any time in Williamsburg I loved this idea and suggested we walk around and explore.  Richard was game and Emma, who really only cared about going to the zoo, was content to go along with this new set of plans as long as we found her some Nestle’s chocolate milk before we began our walk.  It was so warm that all of us shed our jackets within the first few minutes of walking.  Emma had a black fleece, which I helped tie around her waist.  She then shoved the unopened bottle of chocolate milk into the “waist” her fleece created, as though it were a gun being thrust into a holster.  Every now and again she would grab the sleeves of the fleece and tighten it around her belly, ensuring that the chocolate milk remain in position.  I wish I had a photograph, I can’t think now why I didn’t take one, it was such a powerful look and one she was able to carry off effortlessly.

For those unfamiliar with New York City and it’s nearby environs, Williamsburg, once occupied by large industrial companies such as, Pfizer, Domino Sugar and Standard Oil, was also a coveted resort for many of New York’s wealthy elite in the 1800’s.  In the early 1900’s it became home to Hasidic Jews escaping Nazi, Germany and much later to Puerto Ricans lured there by the abundance of factory jobs.  Williamsburg is now going through a gentrification, with hipsters and artists populating the unoccupied enormous factory buildings and loft spaces.  Though many artists have already begun moving east, unable to afford the rising rents in Williamsburg, it still retains a certain “hip” allure with almost everyone under the age of 50 showing off elaborate tattoos and unconventional hairstyles.

By the time Emma, Richard and I reached the East River, Emma enthralled with the notion we would take a water taxi back into Manhattan never once mentioned the zoo.  When I explained to her that we would only have time to wander along the piers before the water taxi arrived and would then have to head home she nodded her head and said, “Go on water taxi, then take number 1 train home!”

“Yes, except we can’t take the number 1 train, we’ll have to take the number 2 train.”

“Take the number 2 train,” Emma confirmed.

Emma was ecstatic when we boarded the water taxi and sat on a seat closest to the window.  “Mommy sit here,” she said, patting the seat directly in front of her.

“No, Em.  I’m going to sit next to you here.”

“Mommy sit here?”  Emma said looking slightly distressed.

I knew she wanted me to sit in front of her because she wanted to suck her thumb without any comment from me.  “It’s okay Em,” I said, before sitting down.

Another family sat directly in front of us, with two small children no older than three.  One of the little girls turned around in her seat to stare at Emma and then mimicked her by jamming her thumb into her mouth, just as Emma was.

When we arrived at South Seaport Emma said, “Go get Nicky.”

“No Em.  Nicky’s friends are going to drive him back into the city later. But we could walk a little bit and take the number 1 train.”

“NO!” Emma cried.  “Take the number 2 train.”

Which is exactly what we did.

“Hey Em.  This was such a great day.  Did you have fun?” I asked as we shot uptown on the number 2 train.

“Yes!  I had so much fun with just Mommy and Daddy!”

For my latest piece in the Huffington Post, click ‘here‘.

Cheerios

Yesterday morning I asked Emma if she’d like to have some Cheerios for breakfast.

“Yes!  Cheerios!” she shouted.

I poured some into a bowl and then gave them to her with vanilla unsweetened rice milk.  She hesitated before digging in.  “I like Cheerios,” she announced.  “Cheerios for dinner?”

“No Em.  We’re not going to start having Cheerios for every meal again.”

“Just for breakfast,” Emma said, nodding her head up and down.

When I came into the kitchen this morning, Emma had placed the box of cheerios with a half gallon container of regular organic cow’s milk on the kitchen counter next to a bowl and spoon.  “Oh no, Em.  You can’t have this milk.  You can have your Cheerios with this one.”  I handed her the rice milk.

“I don’t like that one.”  She turned away and said, “No more Cheerios.  Have toast with cheese in the bakery instead.”

“In the bakery” is what Emma says when she wants something heated up in the oven.  When she first said it last summer while we were in Aspen, we were all confused.  I even took her to a restaurant in town called – Main Street Bakery.  Eventually we figured it out – she wanted to have two slices of bread, lathered with butter, put on a cookie sheet and then baked in the oven.  She likes to sit on the floor next to the oven door, periodically peering through the window into the oven until it’s done.

But this time she added that she wanted cheese, which was a first.

“Here Em, which cheese do you want?”  Barely able to contain my excitement that she was asking for something different, I showed her the three different kinds of sheep’s milk cheese and one goat’s milk cheese so she could choose.

“This one!”

“You wore her down,” Richard said.  “What happened to the Cheerios?”

“She doesn’t like the rice milk, so she won’t eat them.  Anyway, I noticed they have corn starch and she shouldn’t have anything with corn.”

Richard nodded his head and kept walking.  Richard has never been a huge proponent of this second round on the GFCF diet.  His feeling is – we tried it when she was two with no change, why would it do anything now?  But being the kind, supportive and generally awesome guy that he is, he has gone along with it.

I know none of this makes any real sense.  Emma has shown no significant uptick from taking all these various foods away and it’s been almost seven weeks.  But still I hold out hope, against all reason, against all evidence, against anything rational.  If I’m being honest, I have always wondered whether I didn’t do the GFCF diet right the first time around.  Maybe I wasn’t strict enough, maybe there was a food that she shouldn’t have had that I didn’t know about.  One can drive oneself crazy with this kind of thinking.  I know.  My husband knows.  Definition of crazy:  Doing the same thing over and over again and expecting a different result.  So yes, I get it.  But, for what it’s worth, here’s my (crazy) thinking – she didn’t test intolerant for gluten, so we’re putting it back in, but staying away from all the things she did test an intolerance for just in case some of those might be causing her problems.   I cannot imagine there will be any change, though.  Hope doesn’t rest on rational thinking however.  At this point I’ve downgraded my expectations to the idea that she’ll expand her diet.  It would be so nice to go out occasionally to a restaurant as a family.

It would also be so nice to have a personal chef – and that wish hasn’t transpired either.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

A Brilliant Mind

I have maintained in previous posts, that I continue to believe in my daughter’s brilliance.  Current IQ tests do not account for children who are non-verbal or with limited or impaired speech.  I have no way of knowing what Emma’s IQ is, but I can tell you there are things Emma does, on a daily basis, indicating her mind is capable of some pretty astonishing leaps.  What follows are a number of examples.

Our refrigerator light is out.  The first thing I did was replace the bulb, only to find that wasn’t the problem.  A little later Emma opened the refrigerator door and pressed a switch on the ceiling of the refrigerator and immediately all the lights came back on.

“Wow Em!  How did you know to do that?” I asked incredulous.

“Lights broken,” Emma said, nodding her head up and down as she removed her caramel yogurt from the frig.

“Yeah, but how did you get them back on?” I went over to her and watched as she reopened the door and pressed on the little white button that activates the lights when the door is opened, something I did not realize until Emma showed me.  The lights flickered for a second and then went out.  Emma reached up and matter-of-factly jiggled the switch and the lights came back on.

“There,” she said, with a certain degree of satisfaction.

After a few days of all of us wiggling the switch, the lights flickered on and off feebly one last time before remaining permanently off and I had to call the company to get the light switch replaced.  Now to many of you, this may seem completely commonplace, but I can tell you, I had spent quite a bit of time trying to figure out what was causing the problem.   I should have saved my time and just asked Emma.

Yesterday while Emma and I worked on her literacy program requiring her to choose the word “leg” from several options, she positioned the cursor over the correct button then clicked on the space bar.  Then she looked over at me with a mischievous grin as if to say – did you see that?

Again, hitting the space bar instead of clicking on the mouse or the return key never would have occurred to me.

Another thing I’ve noticed while working with Emma is that she has an amazing ability to see patterns.  So, for example, if I show her a series of “words” but with only parts of the letters showing such as:  _a_s,  r_ _ _, _e_ _, _ _s_ and ask her to find the one that can be “eats” she will find the correct one immediately, less than a second, faster than I am able to.  I am consistently amazed by this.  It is in keeping with her ability to know instantly when a photograph is missing from her pile.

Emma’s box of photographs – over 200

The other day Emma was singing while shooshing around on her scooter.  Richard was reading in the rocking chair, Merlin happily nestled in his lap.  “You know what she’s doing right?” Richard said looking over his reading glasses at me.

“Yeah,” I said without looking up.

“She’s created her own carousel.  Do you hear her?  She’s singing all the songs they play on the carousel.  And watch.  She’s going around and around on her scooter in the same direction as the carousel.”

I stopped reading and watched and listened.  Emma was currently singing “Georgy Girl” one of the many songs they play at the Central Park Carousel.

“I wonder if she’s singing the songs in the correct sequence,” he wondered out loud.  “We’ll have to make a note of that next time we go.”

Emma riding on the Central Park Carousel

These are only a few examples of Emma’s brilliant mind.  There are countless others.

We, as a society have a tendency to view ourselves and others with a critical eye.  We are taught early on to look at our deficits and then do all we can to take corrective measures to make up for those deficits.  I don’t believe this kind of thinking is helpful with children diagnosed with autism.  The deficits pile up unbidden until that’s all we can see.  Our children are routinely viewed as “less than” as we struggle to help them.  I feel strongly a more balanced approach is necessary.  Our children are often brilliant.  If I approach Emma with this in mind, I am able to more fully help her, by focussing on her talents, on the things that are easy for her and using those assets to help her with the things that are more difficult.   In addition I find I can learn a great deal from her.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com