Tag Archives: Siblings

The Power Of Understanding

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

A Conversation in the Car

Because Em has just brought in the timer and set it for ten minutes, this will be quick!  Kind of like speed posting.  (Post on Markram interview will have to wait yet another day!)

I posted the following conversation on Emma’s Hope Book page on Facebook last night.

Driving home from the swimming pool. Nic and Em in the back seat. 

Nic: Em stop it.

Em: Cha, cha, cha

Nic: Mom! Make her stop. She’s doing that just because she knows how much it annoys me!

Em: Cha, Cha, Cha

Me: Turning around to monitor the situation  Okay, Em. What are you doing?

Nic: She’s trying to bug me!

Em: Grinning  Cha, cha, chocolate milk!

Me: Oh my god, that’s hilarious. Richard! Putting my hand on Richard’s shoulder.  Did you hear that?

Richard: What? What happened?  Looks in rearview mirror.

Em: Laughing  Cha, cha, cha, chocolate milk

Nic: She just changed it so you guys wouldn’t make her stop!

Em: Leaning toward Nic, gets right in his face  Cha, cha, cha, chocolate milk!

Nic & Em begin laughing hysterically.

Not only was the above conversation noteworthy because this type of interaction between Nic and Emma is not typical, but it was also worth mentioning because of Em’s increased interest in word play.  I see this in her desire to play Duck, Duck, Goose where she comes up with different word associations.  Sometimes, as in the case of “China boat, china boat, ocean!”  I’m not clear what the word association is, but I no longer doubt that there is one.

Emma eating her cake

Cloud cover over the Rockies

Walter and friends


Nic’s Birthday

“It’s Nicky’s birthday!”  Emma said, bouncing up and down.

Nic beamed at her.  “Yeah.  Thanks Emmy.”

Then Emma launched into a rousing rendition of Happy Birthday, not once, not twice, but three times!  By the third time she was beginning to lose her audience, not that she cared.  Nic was intent on opening his presents.  “Where’s Dad?”  he asked more times than Emma sang Happy Birthday.

For the record, it was 6:24AM.

A trip down memory lane through pictures and text…

Two years ago I interviewed Nic about what it was like for him to have Emma as his sister.  Things have certainly changed since then.  For a view into a year or so later, click ‘here‘ and then more recently, ‘here.’

 Richard, Nic and me minutes after Nic was born 12 years ago.

That look on my face is joy (I know you wouldn’t have guessed) mixed with exhaustion.  My labor was over 38 hours long!

At our wedding, getting ready to nurse, yup nothing conventional about anything in our lives, even then. 

On our honeymoon in Taxco where we all got sick.

Big Brother, Nic.

Growing up

In a flash –  12 years later 

Nic and Em

Merlin looks on.  I imagine he’s thinking – Is there room for me?  No, maybe I’m safer here.  They certainly are curious creatures, these humans.

Happy Birthday Nic!

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here


Sleepovers, Siblings and Autism

I have to begin by pointing out our redesigned, upgraded and improved site!  (If you could see me I look like Carol Merrill in front of door #1 on Let’s Make a Deal.  I’m waving my arm up and down, pausing at all the new, awesome features, while smiling invitingly.  Okay, totally dating myself on that one.)

A few months ago my cousin, Peter and his wife invited Emma’s older brother, Nic to come to their home for a “sleepover.”  On the designated and much anticipated afternoon, Nic and I took the subway uptown to their home.  I got Nic settled and discussed when we should come to retrieve him.   It was decided that we would all come the following morning for a breakfast of pancakes and then be on our way.  (My cousin is actually close to my mother’s age, yet I feel particularly close to him and his wife.)

When I returned home Emma had just returned from a full day of activities.  We had told Emma that Nic would be spending the night with “cousin Peter and Susan” several days before and she seemed to take it all in stride.  The next morning as planned we went to pick up Nic, ate a lovely breakfast that Susan had prepared for us, and left, thanking them profusely.

Yesterday, now at least a month later if not more, Emma announced, “Go sleep over at Susan and Peter’s house.”

Thinking she meant that she wanted Nic to go there again and that she had so enjoyed our night with Richard and me all to herself, I said, “Oh!  You want Nicky to go back to Peter and Susan’s house?”

“Yeah!”  she said, nodding her head vigorously.  Then she came closer to me and said, “Go with Nicky?”

“You want to go with Nicky to Peter and Susan’s house?”

“No.  Just Emma.”

Confused, I said, “You want to go to Peter and Susan’s by yourself?”

“Yes.”  She looked at me expectantly.  “Spend the night at Susan and Peter’s!  Nicky stay home.”

It was one of those moments when you feel overjoyed, but also filled with sadness.  How could I tell her this was unlikely to happen?  How could I explain that Peter and Susan might not invite her?  How could I explain that this was not something I could ask them to do?  As my mind whirled around trying to figure out how to respond, Emma began to cry.

“Go to Peter and Susan’s house.  Sleep at Susan and Peter’s house.  Tonight.”

The longer I remained silent the more she upped the ante.  I glanced over at Richard with a look of desperation.  A look that said – how are we going to deal with this?

Richard explained that tonight we were going to have dinner and then go up on the roof.  We brought out a calendar and ticked off the upcoming activities we had planned.  We tried to explain to her that we couldn’t invite ourselves over to people’s homes.  (This was way to complicated and too much information.)  And the whole time I kept thinking how do we explain?  How do we say this simply?  As she became more fixated on the idea, she began repeating it over and over again in between tears.  Everything we said, “Not tonight, Em.”  or “Maybe over the summer,”  did little to satisfy her.

Eventually I brushed her and did joint compressions.  She seemed calmed by this and we talked about pressure and how she prefers firm long strokes, not light strokes.  We both did some breathing exercises together and the fixation on going to her cousin’s house seemed to dissipate.  Later Richard put on music for her and we danced.

After I had put Emma to bed and read stories to her, I said to Richard, “You know there’s a really positive side to this.  She’s showing her desire for independence.  It’s pretty amazing.”  We discussed how this represented so many terrific leaps forward for Emma.  She is eager for more independence, is cognizant of Nic having sleepovers, and wants to have that experience too.

It’s all good.  (Where did that expression originate, by the way?!)  But it is.  It’s all good.

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

For my latest Huffington Post:  HuffPo

Emma’s Brother

Emma’s school has a sibling group that meets every other week.  The neuro-typical siblings meet for an hour, eat pizza, play games in the gym and generally just hang out for an hour or at least I think that’s what they do.  Nic, who turns twelve in another few months, has no interest in going, so we have never been.  For the past few weeks though, I’ve been encouraging him to give it a try.

“Why not?” I asked him the other day.

“Why would I want to go to her school and be with a bunch of kids I don’t know?” Nic looked at me and then asked,  “Will she be there?”

“No.  That’s kind of the point.  It’s time you can spend without her.”

“Why would I want to do that?  I’d rather go if she was going to be there.”

“Well, you might meet some other kids and find you liked them.  You might make some new friends.”

“But Mom, I have all the friends I need right now.  I don’t need any more friends.”

“What about the idea that you might meet some kids you like who also have a sibling with autism?”

Nic stared at me, seemingly dumbfounded.  “Why?”  he finally asked.

“Well, so you won’t feel so alone.  Because it might help to feel you could talk about it with another kid, because, maybe…”

“Mom,” Nic cut me off.  “I don’t feel alone and I can talk with you and Dad if I feel like it.”

“Don’t you ever want to talk to someone else though?”


When Nic was in Kindergarten, less than a year after we received Emma’s diagnosis, we took him to a child psychologist where he did “play therapy.”  This was in the days when he was drawing lots of bloody monsters who ate people.  He would spend hours on a drawing or painting, which he would then present to us proudly.  Red, one of his favorite colors, predominated as the depiction of blood was a prevalent theme.  Blood, carnage, gore, guts, people being decapitated and eviscerated, huge, frightening monsters almost always with severed limbs hanging from their mouths, were common subjects in his earlier work.  Then he went through a phase of depicting serial killers, chain saw murderers and any manner of brutal and horrifying creatures.  Richard would proudly shake his head and mutter something about how the apple didn’t fall far from the tree.  And it’s true, Richard and Nic share their love of horror and gore.  But when Nic’s second grade teacher called us to inquire if everything was all right at home because Nic’s graphic artistry was seen as being extreme, we had to have his psychologist speak with the school, assuring them that all was well.

A few years later when Nic’s homework load increased, he chose to stop going to the psychologist with the understanding that he could always go back.  However he has never wanted to.

Still, the sibling group seemed like a good idea, so I’ve been encouraging him to give it a try.

“It wouldn’t hurt to go just once.  You never know, you might find you like it,” I told him.

“Yeah, maybe,” Nic said, though it seemed like he was saying that so I’d stop pestering him more than because he thought it was a good idea.

“They’re having another one in two weeks.  Maybe you’ll feel like going to that one,” I suggested.

“Yeah, maybe.”

For more on our family’s journey through Emma’s childhood of autism, go to:   Emma’s Hope Book

Emma’s older brother, Nic

Yesterday I took Nic and Emma to a relatively new carousel on the refurbished park along the Hudson River.  It’s unlike other carousels in that it has a wide variety of animals, fish and insects instead of the traditional horses one usually sees.  Emma likes to ride on the Atlantic Sturgeon, with the Unicorn and Wild Turkey coming in second and third.

Emma riding on the unicorn

I’d ride on the hyena or the coyote,” Nic told me when Emma chose the Atlantic Sturgeon for a second time.  “What would you ride on?”

“I’d have to go with the Harbor Seal,” I answered.

“Yeah, that would be a smooth ride,”  he said.  We watched Emma go around and around.  Every now and again she’d use the waist strap to tap the sturgeon, as though she were urging it on.  “Mom?”

“Yeah Nic?”

“So how do you blow bubbles with your gum anyway?”

“Okay, here I’ll show you,” I said, taking a piece of gum from his remaining pack.

“Emma blows huge bubbles.  I just don’t get it,” he said as I chewed the gum, trying to get it to the right consistency.

“Well she chews a lot of gum…”

Nic interupted me, “Yeah, I know, because of her ears.”

“Exactly, so she’s had a lot of practice.   But here, watch.”  I tried several times to demonstrate how to blow a bubble, which is quite a bit more difficult to explain than one might think.

After several attempts Nic said, “I think it’s a girl thing.”

We watched Emma for awhile on the carousel.

“Hey Mom?”

Yeah, Nic?”

“It’s weird.”

“What is, Nic?”

“I mean Emma’s so good at some things, but so bad at others.  Like she can blow bubbles and taught herself to swing and she’s really good on the scooter, but she still can’t read or write very well.  I think it’s interesting,” he said.

“Well, you’re right Nic.  There are things that are much easier for her and then lots of other things that are really hard.”

“But I don’t get it.”  He looked at me expectantly.

“Yeah.  I know.  It’s difficult to understand.  It’s the wiring in her brain.  It makes a great many things really, really difficult for her.”

Nic kept trying to blow bubbles with his gum.

“Does that make sense?” I asked.

“No,” he said, shaking his head.  “Not really.”

“Yeah, I know.  It’s really hard for us to understand.  There’s so much more we don’t know about autism than there is we do.”


“Yeah Nic?”

“Do you think I’ll ever be able to blow a bubble?”

“Yes.  You just have to keep practicing.”

“But you don’t let me chew gum that much.”

“Yeah, that makes it harder.”

Nic stared at me with a little half smile on his face.

“Hey, you get to do all kinds of other things that Emma doesn’t get to do, and the only reason we let her chew gum is because of her ears.”

Nic kept grinning at me.


“Nothing, Mom.  Nothing.”

For more on Emma’s journey through a childhood of autism and her older brother, Nic’s experiences along the way, go to: www.EmmasHopeBook.com

Hide and Seek

Like many children, Emma loves nothing more than a rousing game of Hide and Seek.  Except Emma doesn’t like to look for anyone, she just wants to be the one to hide, always.  She also only likes to hide in one place.

Which kind of defeats the whole purpose of the game.  Because not only is she utterly predictable, she’s also really hard to miss.  Never-the-less, we do our best to play the part of surprised “seeker”.
“Hmm, I wonder where Emma is?  Let’s see…  could she be in here?”  Dramatic throwing open of various closet doors and curtains, followed by, “No.  Not in here.  I wonder where she could be hiding?!”  There’s a great deal of crouching down, looking under chairs, the bed, her desk, while muttering, “Gosh, I can’t imagine where she could be!”

All of this is done while Emma variously – sings, hums, makes loud breathing noises or whispers to herself , “No, not going to find Emma under the mattress!”

That she is also squirming around makes her hard to miss, still we do our best to play the part given us.  Eventually if we are taking a very long time to “find” her, she’ll give us a little help.

By yanking off the fitted sheet to reveal herself and yelling, “There she is!”

In the theatre world, this would be called stealing lines, hogging the stage or any number of disparaging phrases.  But to Emma she’s simply trying to help us out and we appreciate it.

“Oh!  There you are,” we shout before grabbing a limb and tickling her mercilessly.

“Let go!  Let go, let go, let go!”  Emma squeals.

“No, no, no.  I’m not going to let go.  I’m going to tickle you and tickle you and tickle you..”

The other day while in the midst of just such a moment, Nic appeared in the doorway to Emma’s bedroom, “What are you guys doing?”

“We’re playing hide and seek, want to play?” I asked.

“Yeah okay,” Nic agreed, somewhat reluctantly as he knew Emma would only want to hide underneath her mattress again.

“Should I count or do you guys want to find me?” I asked.

“You and Nicky hide?” Emma said.  Meaning she wanted to hide with Nic.

But I pretended not to understand as every interaction can be an opportunity to teach (we’re trying to help Emma with her pronoun reversal problems), “Oh okay.  So you’re going to find me and Nic?”

“NO!  Mommy find.  Emma and Nic hide!”

“Emma you have to say, Nic and I are going to hide.”  Nic took her finger and made her point to herself, “Me, Emma.  You say me,” then he looked up at me with an expression of mild exasperation.  “No wait, that’s not right.”

I nodded my head.  “It’s okay, Nic.  You’re doing great.”

“Okay, okay,” Nic said, starting over again.  “Em, you have to say I.  I’m going to hide with Nic or Nic and I are going to hide.”

At this point Emma had lost all interest and was trying to get one of her favorite youtube videos up on her computer.

“Come on Em.  One last game,” I encouraged.

“Five minutes then computer,” Emma said.

“Yes. One, two, three, four, five…”

For more on Emma’s journey through a childhood of autism and an interview with her older brother Nic, go to: www.EmmasHopeBook.com

Milestones and Miracles

As we sat at the dinner table last night celebrating our dear friend Claudie’s birthday, I saw Emma ride up to Nic on her scooter and stand in front of him as he sat on the couch listening to music on his iPod.

“Hey Nic!” she said.

It was very unusual for Emma to go up to Nic and speak to him so directly so I nudged Ariane who was sitting next to me, and pointed in their direction.

“Hey Nic!” Emma repeated. “Will you come to mommy’s room with me and watch Elmo?”

We were absolutely floored. Ecstatic. Choking up with emotion. Not only was this one of the longest and most articulate sentences Emma has ever spoken, it was also directed at Nic, asking him to do something together with her.

For any parent of two normal children, this would be something you take totally for granted — something you would have witnessed twenty million times by the time your children were 10 and 8 years old. For us it was first, a true milestone, as significant as when Nic and Emma took their first steps or spoke their first words. More than that, it was something we had hoped and prayed would happen for such a very long time. Something we feared might never happen.

It was a miracle.

We looked at our guests with our mouths hanging open in shock and wonder, then began hugging and kissing each other in joy and gratitude. It was such a special moment, made even more special by the great good fortune of being able to share that wondrous milestone with such special friends. Claudie said it was the best birthday present she ever had. Elaine knew exactly what we were feeling and how significant it was, having experienced parental challenges so much more arduous and painful than anything we have weathered.

I went with Emma and Nic into our bedroom and helped her put the Elmo DVD on, then spied on them from around the corner, my ears perked up for any more dialog that might be forthcoming. They just sat together silently, watching Elmo, Nic barely able to tolerate it, but being such a great sport, Emma looking so happy in his company.

Eyes were teary as we put the candles on Claudie’s cake, then called for Nic and Emma to join us. Emma came running in like a freight train, since two of her favorite activities in the world are singing Happy Birthday and blowing out candles. True to form, Emma led the chorus, singing as loudly and cheerfully as always. When the song finished, Claudie started to blow out the candles but Emma leaned across the table and blew out most of them first.

“Emma, those are Claudie’s candles,” Ariane admonished, then asked Claudie if she wanted us to re-light them.

“No,” Claudie said, “I already made my wish.”

And we had one of ours granted.

Autism and the Family

“Mom! “ Nic’s cries could be heard throughout our home.

“What is it, Nicky?” I asked.  It was 1:00AM.  I could hear Emma whimpering.

Nic began to cry.  He stood in the middle of the living room, pointing toward his bedroom.  “She’s in there, she woke me again,” he said before bursting into tears.

“Oh, Nicky.  Come on.  I’ll get her out of your room,” I took his hand and led him back to his bed where Emma lay.

“Emma!  This is not okay.  You may not wake up Nic!”

“Nic’s room, bye-bye!”  Emma said cheerfully.  Then she began to whimper.

“That’s right.  You may not wake up Nic.  Go to your room,” I said.

“No.  Not going to wake up Nic,” Emma said.

The night before Emma woke everyone by screaming in the middle of the night.  It was similar to being woken by an air raid siren, jarring, disconcerting.  The shrieks were deafening.  We punished Emma by not allowing her to have her beloved pancakes the following morning.  Even so, she seemed not to fully understand the connection.

Emma’s nocturnal awakenings affect all of us, but so do her public melt downs, her inability to communicate, her inability to understand and empathize with others, her limited food choices, her inflexibility.

Perhaps of all of us, it is hardest on Nic.  He is the one who gets the brunt of our impatience.  It is Nic who feels the weight of being expected to be the “normal” one, who understands and feels our stress, who feels fury with Emma for her very public displays, which he finds increasingly intolerable and embarrassing.  He longs for a “regular” sister, one he can play “hide and seek” with, one who will play card games with him.  One he can talk to.  As exhausted as Richard and I are by our sleep- deprived nights, we do our best to plod along.  We talk with one another, lean on each other.  We rely on gallows humor when everything seems bleak.  And while we encourage Nic to talk honestly about his emotions, I wonder whether he really feels he can.  I wonder whether he doesn’t feel he is placing yet another burden on us, and censors his thoughts and feelings.

For several years after Emma’s diagnosis Nic went to see a child psychologist.  A year ago he requested that he not go any longer.  We spoke with him at length and promised him we would not force him to continue seeing her if he didn’t want to go back.  Since then, I have asked him several times whether he’s sure he wouldn’t like to return or find a new therapist, he has continued to say no.

I have learned over the years, that as bad as things are or seem:  a) they can always get worse, b) they can seem worse than they are and c) one can always shift ones perspective ever so slightly enabling one to see things differently.  I have found when I am able to achieve a more balanced perspective I am better able to cope.

Emma has changed all of our lives dramatically.  She has pushed each of us.  Sometimes it feels to our breaking point, but we have all survived thus far.  Emma forces me (I will not presume to speak for any of the other members of my family) to pay more attention.  I appreciate small gestures, small acts of kindness more than I did before Emma’s diagnosis and it inspires me to do the same for others.   For instance, I am constantly aware of how hard my husband, Richard works to help her, to help Nic, to help me.  He is a rare breed, fiercely ambitious, a visionary and yet places his family firmly first, not just in thought, but in his actions.  He believes in equality and behaves in accordance to those beliefs.  He is as strong a man as I have ever met, giving both emotionally and physically of himself.

Emma has taught me to see the world differently.

And it is beautiful.

Nic Teaching Emma to Play the Piano

A few weeks ago Nic was playing “Hey Jude” on the piano.  “Hey Jude” happens to be one of Emma’s favorite songs, so Emma sang along as Nic played.  A little later, maybe the fifth or sixth time Nic ran through the first verse, Emma wandered over and stood beside him at the keyboard.  Every now and then she would play a note and look at him.  Within a few minutes she was seated at the piano and Nic was teaching her the notes.  (That’s Nic’s hand on the right side of the photo showing Emma which note to play.)

In the beginning Nic helped her by prompting her to find the correct notes, but after a few times, she was “prompting” herself.

This is an instance when her ‘perseverative’ behavior pays off.  After much practicing the notes Nic showed her, Emma was able to play the first verse of “Hey Jude”!


Marriage (Part I)

(*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.)