Tag Archives: autistic children

I Believe…

Posted on April 28, 2011 by | 3 comments

Every year we have a meeting with the Board of Education aka BOE.  Yesterday morning was our scheduled meeting time, but because Richard has been ill, I went alone.  I do not look forward to these yearly meetings.  And as yesterday morning got off to a bumpy start I was doing my best to bolster myself for what I knew was going to be an emotionally  difficult time.  They always are.  It is at these yearly meetings when we go over Emma’s IEP (Individualized Education Program).  Each year the BOE sends someone from their department into Emma’s classroom to observe her for a half an hour.  From that observation, a report is written, almost always a report we read with dread.  It’s not that they are unreasonable or unfair, though sometimes Emma is unrecognizable, it’s that they are stripped down to the basics.

A sample from one of these reports:  “Emma came down from the cabinet and lay down on a rug.  At 9:07, she remained lying on the rug.  At 9:08, she went out of the classroom and came back barefooted with a plastic box.  A teacher assistant showed her two bottles of paint.  She said, “no” loudly…”  The report goes on to depict a low functioning autistic child (Emma) who is somewhat responsive to the teacher’s assistant, at times non-compliant and with almost no verbal language.

This year Emma was also assessed by a psychologist sent from the BOE.  This report was even more troubling: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”  The report goes on:  “Emma was able to hold a pencil somewhat awkwardly and make a scribble, or simple circular motion.  She was unable to copy simple vertical and horizontal lines, or any simple recognizable geometrical designs.”

As her mother it is difficult to read these reports.  I look at my daughter, my beautiful, funny, athletic Emma and I see her potential.  I choose to believe she is capable of so much.  I choose to believe she understands so much more than she appears to.  I choose to believe she will one day read and write.  I choose to believe one day she will communicate with us.  She will tell us what it’s like for her.   I choose to believe these things because to do otherwise is not a life I want to live.  But when I am confronted with reports such as the ones I’ve quoted from, it makes me question, even if for only a moment these choices, these so called beliefs of mine.  What if I’m wrong?  A question I always follow with – what does it matter if I’m wrong?  Because if I’m wrong, I won’t find out until I’m very old or will never know because I’ll be dead. I will always choose to believe I’m right about Emma.  I have to.  All the work we do with her every single day is because I believe in her abilities.  I believe she can do more.  I believe she is capable of so much.  When I tell her we have to do yet another reading exercise or writing exercise I am doing so because I believe she can.  When I read to her about Harriet Tubman or Helen Keller or Balto or the discovery of King Tut’s tomb,  I believe she is taking it all in.  When I ask her if I should keep reading and her answer is always – yes – I take that as confirmation of my beliefs.  I know I am making a choice.  I know my decision to believe these things are based on very little, but never-the-less I believe.

I believe in Emma.

For more on Emma’s journey through a childhood of autism and my journey in parenting an autistic child, go to:  EmmasHopeBook.com

Emma waiting for her school bus this morning

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Some Mornings

Posted on April 27, 2011 by | Leave a comment

Some mornings are just not meant to be woken to.  This has been such a morning.  Emma lost her balloon string.  A yellow piece of string that was once attached to a balloon.  Emma doesn’t care that the balloon is no longer attached, in fact, she isn’t even remotely interested in the balloon.  It’s the string she cares about and this morning it went missing.  No amount of reassurance, no amount of talking to her about it, no substitutions would quell the storm that emanates from Emma when she is upset.  Emma was beyond upset.  Emma was heart broken, in a panic, utterly stressed out, screaming, snot pouring from her nose, shrieking “I need help!   Mommy!  Mommy!  I need help!” over and over and over again until the words become some sort of hysterical mantra.  It is at this point that she begins to script.  “I know baby.  You threw it!  You cannot throw it.  I need help.  Mommy!  I need help.  Baby, baby you can’t throw it!”  And on it goes, repeatedly, between tears and screams and stomping of feet and then when it all becomes too much she bites herself or hits herself in the face or punches herself in the leg or arm.  And we run around trying to find the damn balloon string or mutter under our breath that we should have thrown the stupid string away days ago, because this isn’t the first time she’s lost it and no substitution will do.

Last weekend when Richard offered her an identical balloon string she said, “Other one.”  And walked away.

No there will be no substitution and all that can be done is to barricade oneself mentally from the screams, try to keep ones patience and get her ready for the school bus because if we miss that, we have a whole new set of problems.  Once we were downstairs the tears and scripting continued.  But eventually, eventually she calmed down enough to play “bat” with me.  We talked about the bus and school and later Joe and study room and how it was going to be a good day.  It got off to a rocky start, but it would be okay.  And somehow, at some point Emma seemed convinced that this just might be true.

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

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An Easter Birthday Party

Posted on April 25, 2011 by | 3 comments

To Emma a party is a birthday party, no matter what we say to explain that this is not the case in every circumstance.  Yesterday was no different.  When Emma saw me pulling out the linen table cloth and setting the table for our Easter (or as we like to refer to it – Welcome to Spring) party she said, “It’s a birthday party!”

“No Em, it’s an easter party,” Richard said.

“Birthday party,” Emma insisted.

“Today is Easter.  We’re having a dinner party for Easter,” Richard explained.

“Easter birthday party!” Emma said, jumping up and down.

“Not a birthday party, just Easter,” Richard patiently corrected her.

Not easily swayed, Emma cheerfully said again, “Easter birthday party!”

“Whatever Dad,” Nic said, accompanied by the one-two punch that apparently afflicts all tweens – shrugging his shoulders and rolling his eyes.

“Hey Em, sometimes we have a party and it’s not for anyone’s birthday…” I began.

“Christmas,” Richard interjected.

“Thanksgiving,” I added.

“Valentines Day, no wait that’s Daddy’s birthday,” I said, catching myself and realizing this was only going to confuse the situation.

“Birthday party,” Emma chimed in.

“Except no one is having a birthday tonight.  We’re having people over just because it’s fun.”

At this point Emma wandered off, probably feeling we’d exhausted the subject.  A little later she returned to survey the cooking and, since I’d made cupcakes for her and Nic and his friend, knowing they probably wouldn’t eat the meringue & apricot extravaganza I’d made for the rest of us, to lick the icing.

As though to prove her point she said, pointing to the purple, blue and green frosting, “Yum!  Birthday cake,” Emma said.

“Easter cupcakes,” I said.

“For Easter,” Emma said, nodding her head.

“Yes!  That’s right.  For Easter.”

“Easter!” Emma said.  And then as she was walking away she said very quickly and under her breath, “Easter birthday party!”

For more on Emma’s journey through a childhood of autism and an actual birthday party go to:  EmmasHopeBook

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Unlocking Emma’s Mind

Posted on April 22, 2011 by | Leave a comment

This morning Emma said, “Play musical chairs!”  Then proceeded to position several dining room chairs in the middle of the room so they had their backs to one another, fanning out in a kind of lopsided circle.  She turned on some music from her iPod and danced for a minute or two, then hit the pause button and yelled, “Freeze!”  She ran to the nearest chair and sat down, staying very still for a few seconds before leaping up and turning the music back on.

When I joined in she said, “Mommy dancing!”  Then she began to laugh uncontrollably.

After about twenty minutes I sat down and watched her continue to play by herself.  She looked up at me and smiled, then covered her eyes with one hand.  “Hi Mommy!”  she said, peeking out between two fingers.

“Hi Em.”

“Playing Freeze with Mommy.”

“Yeah do you want me to keep playing?”

“No.  Nicky hurt his toe in Aspen.”

This is typical of Emma to make a sudden leap in thinking or maybe we all do this, but she just verbalizes her train of thought.  Maybe he hurt his toe while they were listening to music, I can’t remember any more.  Maybe it was simply an errant thought.

A specialist said, while being interviewed about autism, that they thought autism was the disregulation of neural pathways.  They went on to speak of the idea that people with autism have trouble communicating and putting into words their thinking.  But that it was the communicating that is troublesome, not the thinking.  I have no way of knowing what Emma is thinking, obviously, unless she tells me and even then it can be difficult figuring out exactly what she is trying to tell me, but I know her mind is very busy.  I can see her processing information, I can watch her and see that she is thinking, I just don’t know about what.

When I work with her on her reading and writing I can see how she is very clearly understanding the words she sees.  She is learning to read.  Yet if I ask her to read the sentence – Here is a truck – it causes her tremendous difficulty.  I know she can read it because she knows each word when shown by itself.  Yet put it into a sentence and it confuses her.  It’s similar to when she works at the computer.  She seems to have an easier time typing words and identifying words when she’s on the computer than if she’s asked to write those same words by hand.

When I read about autistic children who suddenly begin to type out full comprehensive sentences, it seems like magic.  Usually these same children have displayed nothing to indicate to their caregivers that they can read, let alone spell.  Yet there are numerous cases of children communicating through typing who have never been able to communicate before.

The other night I dreamt about Emma.  In my dream she was talking to me, just as any neuro-typical nine-year old child would.  She was telling me “secrets” and in the dream I thought how profound this information was.  She was telling me about what it was like for her and answering all my questions.  When I woke up the next morning I tried to remember what she’d told me, but I couldn’t.  I kept thinking if I just relaxed I would remember, as though she really had told me, as though it hadn’t been a dream, as though for a brief moment I had the answers, the key to unlocking her mind.

Every time I work with her on the computer I have a tiny hope that she’ll suddenly write something on her own, something that we aren’t working on.  Like magic, she’ll write a sentence that let’s me in on her thinking and her mind.  And each session when she doesn’t do that, I think – it’s okay, maybe next time.

For now, I have a game of musical chairs waiting for me.

For more on Emma’s journey through a childhood of autism and to hear her sing go to:  EmmasHopeBook

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Piggyback Rides and Bats

Posted on April 20, 2011 by | Leave a comment

The other day Emma said to me, “Give piggy back ride?”  Then she leapt from the couch where she was balancing herself into my arms.

“Em!  You’re heavy!”  I said.

“I feel your pain, Mom,” Nic said to me.

“You do?”

“Yeah, she did that to me the other day,” he said.

“You’re kidding?  How did you carry her?” I asked.

Nic laughed.  “It was tough, Mom.  It was tough,” he said, shaking his head as he left the room.

Later Geneva, one of our wonderful caregivers, confirmed that Nic had given Emma a piggy back ride.  Here are the photos she took documenting it.


Last night Emma said to me, “I’m going to fly and bite you!”  Then she ran over to me and bit my cheek.

“Ouch!  Em you just bit me!”  I said.

“A bat, fly and bite you!”  Emma said, laughing.

“Are you a bat?”

“Yes!  Don’t bite me!  Fly and bite you!” she said coming close again.

“No!  Don’t bite me!” I said.

“I’m going to bite you!”

“Ahhhh!!” I yelled running away from her.

It’s always difficult to know whether encouraging her to play a game that she might “play” with another child at school, who doesn’t understand that this is a game is a good idea.  And yet, to not encourage her to be playful seems wrong.  Is this an opportunity to discuss biting and how it’s not okay to hurt, how it’s important to be gentle, how this is a game only to be played with me?

With these thoughts in mind I approached Emma, “Hey Em, when you’re pretending to be a bat…” I began.

“You have to be gentle,” she interrupted me.

“Yes!  You have to be gentle.  And you can only play this game with me, okay?”

“Yes.  Just with Mommy,” she said, nodding her head.  Then she pointed to my cheek and said, “I don’t mean to hurt you.”

“And you didn’t…” I started to say.

“You have to be gentle,” she added.

“That’s right Em.  You have to be so gentle and you can only play this game with me.  You know that, right?”

“Yes.  Just with Mommy,” she said pointing to me.   “Now play – Don’t say Mommy!”

“Okay.  One game of Don’t-say-Mommy,” I agreed.

With which she put her face up into mine and said, “Don’t…  say… Mommy!” and then ran out of the room with me following close behind.

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

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Nic’s Birthday

Posted on April 19, 2011 by | Leave a comment

Emma has very specific ideas about birthdays.  The best birthday, in Emma’s opinion, is one that takes place at one of the many kid’s gyms here in New York City and is followed by a birthday cake or cupcakes with candles and Happy Birthday sung loudly.

However, today is Nic’s birthday and it’s hard for Emma to understand that he did not choose to celebrate it at one of the gyms Emma so adores.

“Hey Em, it’s Nic’s birthday today,” I said early this morning.

“Birthday at Elite gymnastics!”  Emma replied.

“No, Nic isn’t going to celebrate his birthday there,” I told her.

“Birthday at other gymnastics!”  Emma said bouncing up and down.

“No.  Nic didn’t want to celebrate his birthday at a gym,” I said.

“Different gymnastics,” Emma said, trying to process this information.

“Well no.  Not any gymnastics.”

Emma was silent.

“Is there anything you want to know or say about Nic’s birthday today?” I asked.

“Yes,” Emma said.

“Okay.  What?”

“Happy Birthday Nicky!”

“Ah, that’s so nice of you, Em.  Let’s go tell him,” I held out my hand.  Emma took it and went over to Nic who was charging his new video game controller.

Emma leaned into his face and said, “Happy Birthday Nicky-Nic!”

“Hey, thanks Emma.  That’s really nice of you,” he said, putting his arm around her.

Then she gave him a kiss on the cheek.

Happy Birthday Nic!

Emma looks on as Nic reads a birthday card and opens presents.

Merlin amidst wrapping paper

Nic shows off his birthday haul.

Happy Birthday Nic!

For more on Emma and her journey through a childhood of autism go to:  EmmasHopeBook

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Emma’s Dolls Get A Bath

Posted on April 18, 2011 by | Leave a comment

Two nights ago as Nic was helping me clean the dishes, I heard the sound of water running in Emma’s bathroom.  “Hey Nic, hang on a second.  I want to see what Emmy’s doing.”

Nic held out his hand for the scrub brush so that he could take over.

As I rounded the corner I could hear Emma singing.

“Hi Em.  What are you doing?”  I asked surveying the scene.

“Mommy go away!”  Emma said.

This is what Emma says when she thinks she may be doing something we might object to.

“Em!  You’re giving your dolls a bath!”  I said.

“Mommy go away, go away!”  Emma said while trying to close the bathroom door with her foot.

“Okay, don’t worry Em.  I’m gong to go finish the dishes with Nic.  But can I come back a little later?”

“Yes,” Emma said and closed the door on me.

“What’s she doing, Mom?” Nic asked me when I reappeared.

“She’s giving her dolls a bath,” I said.  “It’s so great!”  When I returned to the bathroom I said, “Em, that is so thoughtful of you to put the rubber ducks in the tub with your dolls!”

“And bubbles,” Nic added.

“Doing great job washing doll’s hair,”  Emma said, nodding her head and reaching for the bottle of shampoo.

“Yeah, you’re doing a great job!”  Nic said.

As Nic said this, Emma squirted an enormous amount of shampoo onto each of her doll’s heads.

“Okay, maybe that’s too much,” Nic commented, looking at me with concern.

Oblivious, Emma happily massaged the shampoo into each of her doll’s hair and then pulled one of them from the tub and sat her in the sink.  “Have to rinse hair,” she announced as water sprayed from the sink faucet out into the bathroom onto her and her brother.  “Uh-oh!”  Emma said, cheerfully as she struggled out of her now soaked nightgown.

“Oh boy,” Nic said, retreating from the spray.

Emma carefully gathered all the rubber ducks from the bathtub and sat them on the edge of the sink, then rinsed each of her dolls before putting them on a towel on the floor.

“Dolls all done!”  Emma said, as she wrapped her dolls in several towels.

“Awesome job drying off dolls!”  Emma said.  “Now time for bed,” she added.

I often find myself looking for little clues, the small details in what Emma does as reasons for hope. The washing of her dolls is such a great example, I think, of Emma’s continued development.  That she thought to include the rubber ducks was such a wonderful display of thoughtfulness and pretend play.  Emma still doesn’t cuddle her dolls the way I used to when I was a little girl, but in her own way she is caring for them, giving them a bath, washing their hair, rinsing them off and then drying them, wrapping them in towels before leaving them on the floor.  She has, in the past, put them in bed as well, though she seemed to lose interest before that thought occurred to her.

Emma even remembered to drain the water from the tub before shutting off the light and leaving the bathroom.  Sometimes I think I am clutching at straws, I mean, really what’s the big deal?  So she gave her dolls a bath.  But to me, it is a big deal.  Or I choose to make it one, because really what’s the alternative?  I can find the positive in the things she does, see them as hopeful examples of progress or I can shrug my shoulders and say – So what?

I’ve never been the “so what?” type, so I can’t imagine I’ll start now.

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

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“Mommy Cut Hair”

Posted on April 15, 2011 by | Leave a comment

The other day as I was helping Emma brush her teeth, she said, “Mommy cut hair?”

Which could mean she wanted me to cut her hair or she felt my hair was in need of a trim or she was remembering when I cut her hair a few months ago, it’s hard to say what she actually meant without more information.  “Do you want me to cut your hair Em?” I asked for clarification.

“No?” she said as though it were a question.  “Mommy cut hair?” she said again with the same upward, questioning  tone.

“You want me to get my hair cut?”

“Yes?” she said it as though she wasn’t sure or maybe she was asking me if I agreed with her assessment of my hair needing a trim.

“Really?   Do you think I’m due for a trim?” I asked, looking at our reflections in the bathroom mirror.

“Yes!”

“Really?”  I asked again, not at all sure I was interested in getting my hair cut.

“Yes!  Mommy cut hair like this,” Emma said, reaching over and pulling my hair up so that it barely grazed my shoulders.

“Wow Em!  That’s really short!”  I laughed.  “Are you sure?”

“Yes!”  Emma said and then she ran out of the bathroom.

“Wait Em!  We aren’t finished with your teeth!”  I called.  When there was no reply I left the bathroom and found Emma in the kitchen wielding a pair of scissors.  “Cut Mommy’s hair!” Emma laughed when she saw me.

“Whoa!  Em, no way!  We are NOT cutting my hair right now.  You have to put those away!”

Emma laughed and said, “Mommy cut hair now.”

“No.  Not now,” I said.  “Maybe I’ll get my hair cut later.”

Richard and Nic, who were now both in the kitchen witnessing all of this were laughing.

“Not funny,” I said to all of them.

“Very funny,” Nic said still laughing.

“But that was great,” Richard said to me later.

And it was, because for Emma to express awareness and interest in another person is a huge step.  In fact the entire dialogue was incredible as it did not center around her personal needs.  She was engaged in a playful interaction with another person, about something that had nothing to do with her.  This was a big leap forward.

This morning as Emma was getting dressed, I knelt down to straighten her dress.  She put her hands around my hair and said, “Mommy cut hair like this.”  Then she pushed her face up into mine and began giggling.

“That’s really short, Em.  How about I just get it trimmed. Maybe this much,” I showed her with my hands, cutting off about four inches.

“Okay,”  Emma said.

This afternoon I will go in to get my hair trimmed.  We shall see if Emma approves.

Emma looking at a book before going off to school this morning

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“Embrace-ness-ness”

Posted on April 14, 2011 by | 2 comments

For those of you who have not viewed the interview of Carly Fleishman, you should:  Autistic Teen Finds Inner Voice. (There is a 15 second ad that you must cope with, but the interview is well worth the annoyance of the ad.)

The clip is an amazing example of a severely autistic non-verbal teenager who finds a way to “speak” by typing on her computer.  What occurs as a result is profound with far-reaching implications for all of us.

A follower of  EmmasHopeBook, an English teacher of 7th graders, and I have been engaged in a “cyber conversation” regarding disabilities, “tolerance”, how we view intelligence etc.  She wrote me this morning regarding her english class:  “We’ve also been discussing the semantics of disability (and earlier in the year, racism and homophobia). The word “tolerance” has come up in class, and the kids actually hypothesized and agreed that it’s just not strong enough for the world they want to live in. There were some strong voices saying that they feel it is actually negative! One girl said that, to her, to “tolerate” someone or something means “OK, I’ll put up with this if I have to, not because I want to,” and then they universally decided that the ultimate goal they should be pursuing and activating for is something like equality, or, as the same girl put it “It’s something like ’embrace-ness-ness.’ ”

I love this.  We live in a world, populated by people whom we often judge.  We tend to come up with ideas about other people and the lives they live.  The unknown can be uncomfortable and so we draw conclusions and then behave as though these conclusions were facts.  Someone cannot speak and we conclude they’re intelligence is lower than those who can.  A person is disabled and we conclude their intelligence is disabled as well.  How can we embrace what we do not know or understand?  It can be a frightening prospect and yet it is the key to a better understanding.

When my father finally succumbed to a wheel chair, having had a debilitating accident in his 40’s he was treated differently.  People condescended to him, they felt sorry for him.  He was a proud man, who at one time was extremely athletic.  Being in a wheel chair changed him.  He became despondent, he hated how he perceived people were viewing him – with pity.

When we are out with Emma, people at first believe her to be a “normal” little girl.  But once they speak to her or are with her for an extended period of time, they begin to realize she is different.  Usually they have no idea what is “wrong”, but the way they behave changes ever so slightly.  Sometimes they’ll raise their voice or their tone will change.  They clip their sentences, they speak as one might to an animal.  (I have been guilty of many of these things, by the way.)  It is confusing to be confronted with a child who looks neuro-typical, but who clearly is not.

I wish I could inhabit Emma for a day so I could feel and know what it is to be her.  Would I treat her differently if I knew what it was like to be her?   I hold onto the idea that if I continue working with her on her reading and writing, one day she’ll be able to tell me.

Last night as I lay beside Emma reading to her, she began laughing.  I put the book I was reading down and said, “What’s so funny, Em?”

“Crash into foof!” she said, breaking into hysterical giggles.

“Did you do that at school?”

“Yes!”

“That sounds like fun,” I said.  Emma was silent.  “Do you want me to keep reading?”

“Yes!”

After I finished reading about our moon landing in 1969, I said, “One day Em, you’re going to be able to read and write.  I can’t wait to read and hear what you’ll say.”

“Go to the computer with Mommy and Daddy,” Emma said.

“Is it easier to communicate on the computer?” I asked.

“Yes. Computer with Mommy and Daddy,” she said.

“Okay.  We’re going to work on that,” I said.

“Mommy sing song?”

“Right.  I’ll sing you a lullabye.”  After I sang her a few songs I hugged her.  “I love you Em.”

“So much,” she said.

Emma

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

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One Day…

Posted on April 13, 2011 by | 2 comments

This weekend while working with Emma on her literacy program I showed her an index card with the words – Put the bus here – written on it.  I then pointed to a place on the table to the right of her and waited.  A frog, airplane, bus and kid were all laid out in front of her.  Without hesitation she picked up the bus and placed it where I was pointing.  Were Emma a neuro-typical nine year old child this would not elicit the inward gasp of excitement I found unable to stifle.  But Emma is not a neuro-typical nine year old child.  Emma is a moderately autistic child with massive pervasive neurological issues affecting her speech, imagination, reasoning, ability to conceptualize, communicate, initiate and interact.  To witness her reading and understanding what she’s just read with an action demonstrating comprehension is nothing short of miraculous.

And it fills me with hope.

If Emma is capable of reading, then it stands to reason she will be able to write as well.  What will she choose to write about?  What does she think about?  How does she feel?  Is she aware of her differences?  Does she wish she had friends the way her brother Nic does?  Does she know communicating is more difficult for her than for other people?  What is it like to be Emma?

Other autistic children and adults, many of them non-verbal have found ways to communicate to us about their world.

One such person is Carly Fleishmann, a non-verbal autistic teenager who has found her voice through typing and now has her own blog:  Carly’s Voice

I cannot know what the future holds for Emma.  What I do know is that if we continue to do everything in our power to help her, she will one day be able to answer our questions and communicate with us.  One day Emma will be able to let us in.  One day…

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

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Pretty in Red

Posted on April 12, 2011 by | Leave a comment

Emma dislikes wearing clothing that has scratchy tags, is tight fitting, such as skinny jeans and form fitting jackets, anything that binds or doesn’t have some sort of elasticized waist.  I believe it’s her sensory issues that make most clothing so uncomfortable and so I try to find her things to wear that I know won’t bother her.  If it were up to Emma (and it usually is) she would wear nothing but track suits.  Thankfully there are plenty of children’s clothing companies who produce attractive clothing which relies heavily on elastic waistbands and whatever it is they put into clothing to make it stretchy.  But every now and then in a moment of insanity I see something so cute it’s irresistible and out comes the credit card before I’ve taken the time to consider the above prerequisites.  Inevitably the package arrives and Emma takes one quick look at it and says, “No, that’s too small!”

Which is code for – I have absolutely no intention of wearing this, ever.

If I insist, “But Em, just try it on, then you can take it off.”

She will usually comply while saying, “Just try it, then take it off.”

Every once in a while I have been able to get her to wear something other than her leggings with cute t-shirts and a hoodie, but it’s not the norm.   And once the weather gets anywhere near 50 degrees, Emma begins negotiating to wear her crocs.

“Em, it’s still winter out.  You can’t wear your crocs,” I will tell her.

“It’s too cold!” Emma will say, showing me she understands the concept.  “Wear crocs tomorrow,” she’ll say wistfully.

Emma reminds me of the firemen at the fire station across the street from us.  We always know when the weather is above 40 degrees because the firemen begin wearing shorts.  I figure it must be because they’re around all that fire and heat and they crave feeling the bracing cold air on their skin, but perhaps it’s just they are a heartier breed than the rest of us.  Impossible to say, but I keep meaning to take a photograph of the children bundled in their winter coats standing next to the firemen wearing shorts and short sleeved shirts.

Yesterday the forecast was for a high of 72 degrees, (even though it went up into the 80’s!) so I tentatively pulled out some spring like clothing for Em and held my breath when I presented her with:  a skirt made of cotton, no elastic waist band, soft cotton t-shirt and soft red (wool) sweater, no annoying tags as I had cut them all out.  Then I stood back and watched.  Miraculously Emma put everything on, then chose her shoes, “wear these shoes!” she said cheerfully as she pulled on her socks and pushed each foot into a bronze pump.

“Emma!  You look so pretty!” I told her.

Emma smiled at me and twirled around.  “So pretty!” she repeated.

I took pictures because she was so cute in her red and white outfit and who knows when she’ll ever wear it again, so I figured we needed documentation.  Years from now, I’ll say to Richard, “Remember that day in April when she wore that adorable outfit to school?”  Then I’ll pull out these photographs.

Emma getting ready to listen to some music on her ipod

Choosing the music she wants to listen to

Looking up when I said, “Emma you’re so pretty!”

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

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“Strawberry Cake”

Posted on April 11, 2011 by | 1 comment

Saturday morning Emma said, “Make cake?”

“What kind of cake, Em?” I asked.

“Make strawberry cake?”  Emma said in her usual questioning way.

It’s always interesting to me that Emma will make a statement, but will say it in a way that turns it into a question.  For instance when I ask her – do you want  to wear this?  She will answer, “No?”  which means she doesn’t want to wear it, but is asking if it’s okay not to.  Usually my answer is – okay – or – how about this?  To which she’ll then say – Okay or sometimes she’ll offer an alternative of her own, such as, “Wear this one?”  It’s a clever shorthand using much fewer words, but still gets the meaning across.  When we were in Panama having her third stem cell treatment done, another autistic girl a few years older than Emma did the same thing.  I remember after the procedure she kept saying, “Have chicken sandwich?”  She used the same upward lilt to the ending of the sentence that Emma incorporates.

“You want to make strawberry cake?” I asked Emma, somewhat incredulous as this was something she’s never requested before.

“Yeah!” Emma said jumping up and down.

“Okay.  How about we make a cake tonight?”

“Strawberry cake later,” Emma said.

“Yes, this afternoon.  Okay?”

“Okay,” Emma said.

Later that afternoon, Emma came over to me, “Mommy!  I want to make strawberry cake, please!”

“Okay, Em.  What should we do first?”  I asked as Nic ran over to join us.

“Get a bowl and get out strawberries,” Emma said, taking the container of strawberries from the refrigerator.

“Now what should we do?”  I asked.

“Mush them,” Emma said.

“Okay, here,” I handed her a potato masher.

Emma waited as I removed the stems from the strawberries and put them in the bowl.  Then she began mashing them.  After a little while, (about a minute) she took the milk out and said, “Pour in to mush.”

“Yeah, okay,” I said watching her.

“Mom, are you sure this is a good idea?” Nic asked.

I shrugged.  “I don’t know.  Let’s see what happens.”

“But what about the cake?” Nic asked.

“We can make a batter and add the strawberries to it,” I said, wondering exactly how this was going to work out.  “Hey Nic, why don’t you turn the oven on.”

As Nic turned on the oven, Emma continued to mash the strawberries in with the milk.

“Em, I have an idea, let’s use this,” I offered her a hand blender.  “This will mash the strawberries better,” I added, plugging it in.

“Okay.  Have to mush, mush, mush,”  Emma sang as she worked.  “Mush the strawberries, mush, mush, mush, mush the strawberries.”

Meanwhile I had Nic add a little bit of sugar, mix the flour and baking powder, then cream the butter, sugar and eggs in the electric mixer.

“Hey Em, are you ready to add the strawberries to our cake batter?”

“Yes!”  Emma said, pouring the now blended strawberries into the batter.  “Smell!”  she said, lowering her head so that it was close to the batter.

“Does it smell good?” I asked.

“Yum!”  Emma said.

While the cake was in the oven, Nic and Emma helped me make buttercream frosting.  “Em, should we put strawberries into the frosting?”

“No!”  Emma laughed as though this was the most ridiculous question she’d ever heard.  I looked at Nic.

He shrugged and said, “No strawberries in the frosting, Mom.”

“Okay it’s unanimous.”

When the cake was finished we pulled it out of the oven, let it cool and then Nic and Emma “helped” me frost it, which meant licking the spatula, licking the beater, licking the bowl.   When it was finished I said, “Who wants to have some strawberry cake?”

“I do!” Nic yelled.

“Hey Em, want to taste it?”

“Naaah!” Emma said running to the other side of the room.

“Hey Em.  Come on!  It’s your strawberry cake.  Don’t you want to try it?”

“Okay, just a taste,” Emma said coming over to sniff the cake.

“Mom!”  Nic yelled.  “This is the best cake ever!”

Meanwhile Emma poked at the cake with her fork then tasted the frosting and walked away.  Nic looked over, then rolled his eyes at me.  “Whatever Mom.  It’s a great cake,” he said, taking another mouthful.

What remains of Emma’s Strawberry Cake

For more on Emma and autism go to:  EmmasHopeBook

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Emma’s photographs

Posted on April 8, 2011 by | 2 comments

About six months ago Emma discovered the camera feature on my iphone.  Since then she’s taken hundreds of photographs, many are of the floor and curtains, which I’ve deleted, as well as self-portraits with weird lighting.  But my favorites – the pictures of her surroundings as she is running, dancing, jumping give the photographs a surreal, slightly hallucinogenic, ethereal quality to them.

Self Portrait

Our living room as viewed by Emma

Emma – Self Portrait

I could go on about her “artistic vision,” what they seem to represent, how they appear to reflect her interior life etc.  But I don’t know how accurate any of my ideas really are and for Emma any thoughts I have on her photographic endeavors are meaningless.  She just likes to take photographs.  Interestingly, she has begun to take fewer photos of herself and her surroundings and more photos of the people who are around her at home – us.  Our much-coddled cat, Merlin remains sadly out of the loop however, as she has yet to photograph him.  Even so, I cannot help but feel this is positive as it indicates a growing awareness and interest in others.

When Emma was a toddler she had piles of photographs she would carry around with her.  If one went missing she knew within seconds and would become increasingly agitated until she was utterly inconsolable.  The only remedy was to recover the missing photograph.  If we couldn’t find it, her upset often went on for several hours.  The missing photograph seemed to represent so much more to her than we could understand.  Although I have come to view her disconsolation as more of an obsessive-compulsion than the shattering of her world, but to her it is probably the same thing.

As Emma’s interest in being behind the camera increases, her desire to look at piles of photographs has lessened. Which is something else I see as a positive change.

Even though Em didn’t take this photograph of Merlin – one day she might – and it’s important for him to feel included.  Notice the distended claw piercing the fabric on our couch.  Richard is inwardly cringing as he views this photograph.

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

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The Possibilities Are Endless

Posted on April 7, 2011 by | Leave a comment

Hope.  A few days ago I wrote a post about how I cannot function without an infusion of hope.  One of the most debilitating aspects for a parent with a diagnosis of autism for their child is that it comes with little, if any, hope.  Without any prospect of hope we are faced with darkness, nothing but darkness.

There’s a saying people often repeat when speaking of autism.  It is:  “If you meet an autistic child you have met one autistic child.”  Just as in the general population, no two children are alike, the same holds true for autistic children.  When I go to Emma’s school I am reminded of just how different children on the autism spectrum are.  I’ve met talkative, highly verbal children who have horrific sensory issues, which cause them to melt down in mid-sentence.  I have had conversations with Asperger’s kids who verbally perseverate on a particular topic, but have a terrible time asking any questions of the person they are speaking to.  I have met incredibly affectionate, non-verbal children who hug, hold hands and want to sit in my lap, the lap of a complete stranger.  Show me an autistic child and I will have met that particular child.

When I see a documentary on an autistic child, now grown to full adulthood I find myself wondering if Emma will resemble them.  It’s like picking some arbitrary person on the street and wondering if my almost eleven-year-old, neuro-typical son will resemble that person.  I would never do that.  Yet, I have to remind myself of the absurdity of this exercise and catch myself when I find myself doing it in regards to Emma.  I am reminded of how much I want guarantees of her progress.   I desperately want someone to show me a YouTube clip of Emma 10 years from now.  I want a crystal ball that will tell me, if you do this, this and this, then she will be like this.  And yet, at the same time, I know I don’t really want that.

I cling to the idea that we know very little.  It gives me hope.  For many people the opposite is true.  But when it comes to autism the awareness I would like to see changed is how much we do not know.  Autism is an enormous question mark.  In fact that is the symbol that comes to mind when I think of it. There is tremendous hope in that question mark.  It means the possibilities are endless.

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

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The Suggestions Autism Inspires

Posted on April 6, 2011 by | Leave a comment

I have been trying to find a probiotic that Emma might be willing to take with little success.  Yesterday I asked the man in a health food store for help and when I mentioned it was for my autistic daughter he asked the usual questions regarding her diet (limited), her activity level (high), etc.  I am usually reluctant to get involved in such a conversation as I am almost always inundated with well meaning advice.  Advice that has little, if anything, to do with my original question and advice I have received by literally hundreds of people in the last seven years.  Yesterday proved no different.

“You need to train her to eat healthy foods,” he began.

I smiled in response while remembering the last time we attempted to get Emma to take something she didn’t want to take.  It took three adults holding her down, while I tried to force a spoonful of antibiotics in her mouth.  She writhed around and blew the contents of the spoon out of her mouth with such force it hit me in the face.  Richard stood up at that point and said, “We can’t do this.  There has to be another way.”

My face dripping with Emma’s saliva mixed with the pink sticky antibiotics we had forced into her mouth, I was inclined to agree.

“She should eat only raw fruits and vegetables,” the man in the health food store continued, warming to his subject.

I stared at him and said, “I really am just interested in finding a chewable probiotic that she might actually try.”

Undeterred, the man continued and then said, “You should call this man, he can help your daughter.”

“Is he a doctor?” I asked.

“Oh no!” the man said, looking horrified.

“Is he a specialist in autism?”

“No, no, nothing like that,” the man said, scribbling down a name and phone number.

“So who is this person?” I asked.

“He has vitamins, special vitamins,” he answered.

I looked around the store.  A store well stocked with vitamins of every kind and said, “Look, I am sure this person is a lovely human being, but I don’t need vitamins at the moment.  Thank you anyway.”

“No, no, this man is different,” he said as I turned to leave.

“They always are,” I answered.

Over the years I have had conversations with so many people I can no longer count, exactly like this one.  During those first few years I even took Emma to a number of people I had heard about from others, who claimed to have some inexplicable cure, vitamins, tinctures of homeopathic remedies, healers, people who I am sure believed that what they were doing could and would make a difference, and perhaps they did for someone else’s child.  But whatever it was never made a difference for Emma.

I have had people contact me insisting their child, nephew, grandchild was miraculously healed, began speaking in full sentences etc. as the direct result of whatever magical potion they were telling me about.  It’s not that I think all these people are making up success stories, they are far too passionate for that, it’s that I have heard so many of these stories, literally hundreds of them and they are always of something different.  Each remedy is an anecdotal story of a child the person knows, and yet I have never been told about the same remedy working for anyone else.

One of the things I have learned over the years is that one can spend every last dime one has on these potions, healers, etc. and there will never be an end to it.  One can spend every moment running from one referral to the next, one remedy to the next and there will always be a new one around the next corner.  At a certain point, one cannot continue to investigate every single suggestion given, it simply is not possible from a financial standpoint or time-wise, but most importantly – one must ask the question – what is this doing to my child?

I have no doubt the man in the health food store genuinely thought he was doing me a tremendous favor by telling me about his friend.  What he couldn’t know was that I have hundreds and hundreds of scraps of paper with names and phone numbers scribbled down of people just like his “vitamin man”.

After I left the health food store I was able to locate a chewable probiotic at Whole Foods that miraculously, Emma was willing to chew.  I will see if it makes a difference, though I am not holding my breath.

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

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