Tag Archives: autism blog

We Are Like Your Child: The Blog

Posted on July 10, 2013 by | 27 comments

*To Emma’s Hope Book followers – This post was password protected so that those I quoted could read it first and give their approval before I published.  They have and now it is here for everyone to read!

We Are Like Your Child is a new blog created by a group of people, all of whom have been instrumental in helping me understand autism and what it means to be Autistic.  These are the people I think of as my mentors.  They have helped me more than I can describe.  They are a diverse group in every way, but one.   They all have lived their lives with the same neurology as my daughter.  They are Autistic.  These are the people I often reference when I talk about how our lives changed.  It is their voices, their lives, their stories that have changed mine.  To say I’m excited to introduce their collective blog to all of you, doesn’t really sum up what I’m feeling!  I am grateful.  I am incredibly grateful.

This is exactly the sort of blog I would have devoured, had it existed in 2004 the year Emma was diagnosed.  The year when everything was so terrifying.  The year I began, unsuccessfully, to look for adults who might give me insights into my child’s mind.  We Are Like Your Child is created by those adults.  I will be following eagerly and closely.  Posts so far have included such topics as time agnosia, how one person dealt with having meltdowns as a child, routines and what happens when they are disrupted, and life skills.

A number of the blog’s creators agreed to answer a few of my questions.  (Thank you everyone!)  What follows is a group interview representing the many voices and points of view of its creators.

What is “We Are Like Your Child”?

“We Are Like Your Child is a collective, community blog by disabled, mostly neurodivergent folks.  The name comes from the whole declaration of “You aren’t like my child!  You can X, Y, and Z!” that we hear all too often.  The thing is, my way of doing Z, Y, and X is vastly different from how most people do, because I have a profound inability to do Q, G, and -7 but am absolutely rockin at P, F, and pi or whatever.  So this is kind of a place to write about our self accommodating mechanisms, the workarounds we use to function in a world not even a little built for us.  It’s a collection of coping strategies.  It’s our difficulties.  It’s our strengths.  It’s a collection of awesome people talking about our unique problem solving. ”

“We are more like your children than you know… and while we are all different, we are a roadmap of sorts, a set of guideposts pointing to the many potential directions your child may end up journeying to in the course of their life.”

“There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.” ~ From the post Lost, Mistimed and Melty.

Why did all of you create this blog?

“The most common stories in the media about disability tend to be inspiration porn or people who have a disability but have never had any problems ever (a subset of inspiration porn) or are the tragedy, doom, gloom narrative.  We are presenting a bit more reality than that.  Reality is sticky and messy and complicated and beautiful and difficult and sparkly all at once.”

“We love your child.  What?  You say we do not know your child?  No, maybe not.  But your child is a member of our tribe, our neuro-tribe, our extended family of those who share similar types of brains and similar ways of being in this world and so we do love your child and we want to try to help the Hard Knocks in their School of Life fall a little softer than they did on us.”

” The number one most important thing to guide you in your journey of parenting an Autistic child is your child.  Listen to your child – really listen.  The number two most important piece of your map in the huge love you have for your child.  Feel that love, feed that love, let that love guide you toward doing the best for your child.  We want to be the third big resource for you.  We are the grown-ups who used to be your child.  We want to help your child.  We want to help you.  We created this place as a bridge between our world and yours where we can meet and conspire.  Our collective job is to make the world a better place for Autistics and , specifically, for the Autistics you know and love.  Let’s work together to make that a reality for all of us.”

Yay!  Who among us doesn’t want to work together to make this world a better place?  I do!  I do!  *Jumps up and down.

Ahem.  My next question:  Who do you want to reach?

“I’m hoping to reach other disabled folks, really.  But I am also hoping to provide a resource for people who know and love disabled kids.  If we’ve tried 8,000 things, none of which are “well don’t be autistic then” and had some success, then maybe that’ll mean some kid doesn’t have to reinvent the wheel.”

“We want to reach other adults who are looking for ways to be in this world that suit their needs better.  We have advice from our own experience.

“We want to reach those who love autistic adults and want to help make their lives better.  We can tell you what kind of help we appreciate and explain why help that is not very helpful is… not very helpful.

“We want to reach parents of Autistic children.  Your child’s diagnosis was not the end of the world!  It was the beginning of a new and beautiful life as a member of our tribe.  Your child is not a tragedy!  Your child is beautiful and we want to rejoice with you in the diagnosis that will help your child get their needs met in ways you never dreamed possible.

“We want to reach anyone who wants to know that the lived experience of autism can be difficult, yes, but can be indescribably beautiful as well. We want to reach anyone who is open to learning about Autistic people and how to accept us, how to live co-operatively with us, or even how to be a happier Autistic yourself.”

The guidelines for submissions can be found ‘here‘, but in addition to what a couple of the creators had to say, I just had to quote from their blog:  “So you think you want to submit to We Are Like Your Child? Great! We want to hear from a large number of people, about how you manage to exist in a world that isn’t made for you, and yet like yourself anyway.”

Who can submit?

“We do not take submissions from not disabled people.  Well, I mean, they can send them, the system won’t explode, but we only print submissions from disabled people.”

“We also don’t print submissions that amount to “I just decided to act normal yay me” or “woe unto me life is terrible bc disability.”  Those markets are pretty saturated.”

Do you encourage people to ask questions?

“Yes!  Please ask questions!  We have a facebook page and we also are all reading comments on the blog itself.”

A wonderful new blog has been born.  Let’s welcome it into the world!

The Blog:  We Are Like Your Child

The Facebook Page:  We Are Like Your Child

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Protected: “We Are Like Your Child”

Posted on July 9, 2013 by | Enter your password to view comments.

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The Path of Most Resistance

Posted on August 2, 2010 by | Leave a comment

“No more camp,” Emma said, sitting near my face on the bed. It was sometime between 5:30 and 6:00 AM — my morning wake-up call.

“Camp all gone. Get on the plane, go see grandma,” she added hopefully.

“No Emma. One more week of camp, then we get on the plane and go to the hospital, meet mommy, then go to grandma’s house,” I corrected her.

Then came her inevitable follow-up: “Pancakes?”

I’m guessing she really misses mommy and Nic from her first-thing-in-the-morning declaration that camp needed to be over right now, and it was time to get on a plane. I’m flying solo with Emma this week. Actually Joe is my copilot, working the day shift, taking her to camp until we fly to Panama Sunday and meet up with Ariane.

We spent the morning après pancakes getting ready for our Central Park outing. I’d offered to take her to Coney Island but she surprisingly passed, opting for Victoria Gardens instead. We rode the rides, had lunch and then Emma wanted to “go to the sprinklers” – which meant a nearby playground with a water spray.

On the way over we passed by the carousel, which was closed for repairs. She took it well, no crying, no screaming, no meltdown – she seemed to ‘get it’ that it was closed and that was that. I thought of all the times I’d been in the park with her and she had one of those spectacular tantrums because she wanted to do something and I said no, because we had to do something else or go home. She was so well behaved this time, and we had such an easy day in the park thus far that I wondered if maybe those tantrums were a thing of the past now – that she had mastered another level of growth and maturity — that she had learned how to cope with frustration and disappointment without going haywire.

We went to the playground. She splashed and romped for quite a long while then said she wanted to go home. As we left she started walking north toward 72nd street. “No Emma, we’re going this way,” I said, pointing downtown.

“No this way!” she shouted, almost instantly frantic. “Take the orange train!”

“Emma, the orange train doesn’t run on weekends, we have to take the red train,” I said, trying to sound as reasonable as I could, but already feeling a tsunami of dread cresting above my head.

“NOOOOOOOO! TAKE THE ORANGE TRAIN!” she screamed, then followed it up with an instant cascade of crocodile tears followed by ear-splitting screams when I said, once again as calmly as I could, “Emma there’s no orange train today.”

And so it goes.

That was always one of my favorite Kurt Vonnegut lines. Such a perfect synopsis of life’s ceaseless challenges, fleeting success and predictable disappointment.

She kept screaming for the next half hour while I weathered, for what seemed like the millionth time, the looks of panic, concern, confusion, irritation and scowling judgment, or more accurately, indictment. Why was this pretty little girl screaming like that? What is that awful man doing to her? Who is he? Why isn’t he comforting her? Is she crazy? Some kind of spoiled brat?

And on and on and on. I could have ended it all instantly by simply doing what she wanted, walking where she wanted to walk, doing what she wanted to do, whether there was an orange train running or not. It sure would have made both our lives easier, not to mention the lives of all the traumatized onlookers.

And then what? Emma is a smart little girl who wants what she wants, like any other kid. But if I rewarded her tantrum with the gift of doing exactly what she wanted when she wanted it, the only lesson that would be learned was that screaming works, and the louder you scream, the more you cry, the better it works. I could have taken the path of least resistance, and believe me, I would have definitely preferred to — if my comfort were the only thing that mattered. But my comfort was as expendable as my desire to look virtuous or shield myself from embarrassment. I had to do the right thing for her and for me, regardless of the incriminating glares and withering head shakes.

I went to the nearest bench and sat down. Eventually Emma followed and sat next to me, still crying and screaming. I asked her if she wanted to take a taxi or the red train. More screams and crying. I explained over and over that the orange train wasn’t running and it made me wonder whether she is capable of understanding something even that simple. Ultimately she calmed down and said, “Take a taxi?” Part question, part capitulation.

“Okay Emma, we’ll take a taxi. Do you want to listen to your iPod?”

“Yes daddy.”

And so it goes.

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Emma at Camp

Posted on July 29, 2010 by | 1 comment

These photos are from last year, but until I can get some photos from this year, they will have to do.

Emma leaping with abandon into the lake.

Playing “Wonder Ball”.  The children stand in a circle singing:  “Oh the wonder ball goes round and round, pass it quickly you are bound.  If you’re the one to hold it last you are out! Boom!  Boom!”

Emma loves this game and we have even played it at home seated on the floor of the living room.

Emma with one of two little girls who befriended her and made sure she was included.

Emma woke this morning, saw the grey sky and said, “Uh-oh!  No swimming!”  As swimming is her favorite activity I think she was worried they would not have enough to do.  Joe reassured her as they left to get on the bus that there would be plenty of other activities, including gymnastics, her second favorite thing to do!

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Camp

Posted on July 28, 2010 by | 1 comment

For the past two summers Emma has gone to camp for a couple of weeks.  She attends the same camp her older brother Nic goes to.  It’s about an hour outside of the city with two lakes where the children can go fishing, boating and kayaking, a climbing wall, swimming pool and log cabins.  Last year when we signed Nic up we drove up to see the camp and meet the owner.  Emma was ecstatic when she saw the lakes and the owner said, “Do you think she’d like to come too?”

We discussed her autism and agreed Joe would need to shadow her and facilitate interactions with the other children if it was going to work.  The owner was amenable to everything and willing to take a chance.  The camp also had a strong anti-bullying policy, which appealed to us and so after further discussion we signed her up, agreeing that she should take the bus with the other neuro-typical children.

Last summer turned out to be a huge success.  The other girls in Emma’s unit were kind and inclusive.  Two little girls even took a special interest in helping Emma out with things she didn’t seem to understand and held her hand as they went from one activity to another.  Joe reported to us each afternoon as did the camp manager.  I am, to this day, incredibly grateful to those two little girls in particular who took it upon themselves to help Emma and include her in the group.  Children can so often be cruel to one another particularly if one child is “different” so it was particularly heart-warming to hear of children being so generous and kind.  As a result we signed both Nic and Emma up again for this summer.  Emma began asking about camp in April.

By May, unable to contain her excitement she said to me one morning, “Sleep, wake up, sleep, wake up, go to camp by the lake!”

“No, Em.  Not yet.  The water in the lake is too cold.”

“It’s too cold,” Emma said.

In June Emma said, “No not going to go on the school bus.  Sleep wake up go to camp!”

“Not yet, Em.  In another month and a half,” I said.

“It’s too cold,” she said.

“Well, probably not, but it’s not open yet.”

“It’s closed.  Daddy has to fix it,” Emma said.

“No.  You have to wait.  After we get back from Colorado,” I said.

“You have to wait,” Emma repeated.

When we returned from Colorado each morning she woke up and said, “Sleep wake up sleep wake up, sleep wake up, go to camp!”

“Not for another two weeks Em,” I said.

To which she revised her script, “Sleep wake up sleep wake up sleep wake up sleep wake up sleep wake up sleep wakeup sleep wake up sleep wake up sleep wake up,” she said as she counted out on her fingers how many sleep wake ups there were before the blessed day.  When there were too many or if she forgot where she was in her counting she began to laugh and said very quickly, “Sleepwakeupsleepwakeupsleepwakeupsleepwakeupsleepwakeupsleepwakeup…” until I would stop her.

“Em I can’t keep up!” I said.

She laughed, “Whoa!  Whoa!  You’re gong too fast!”

“That’s right, Em.  You’re saying it so quickly I don’t know how many you’ve said.”

“Pancakes?” Emma said with a sly grin.  As if by squeezing in “pancakes” among all the “sleepwakeupsleepwakeups” she thought I might not notice and actually make them with her.  “Noooooooo!  We cannot make pancakes!  We don’t have time,” She answered herself before I was able to say anything.

Pancakes and camp became a running theme. Entangled in her mind – they are her two most anticipated activities other than going to see her Granma in Colorado.

“Camp?” Emma said as she opened her eyes Monday morning.

“Yes!” I said.  “You’re going to camp with Nickey and Joe!” I said.

“No not going to go on the school bus,” Emma said just to be sure she had the correct information.

“No you’re not going to go on the school bus.  What bus will you take?”

“Going on the bus with Joe and Nickey!” Emma shouted.

“Yes!  And where are you going?”

“You’re going to camp, go swimming in the lake!” Emma said jumping up and down on the bed.

“That’s right!” I agreed.

When Emma returned home from camp the first day I asked her, “So Em.  How was camp?”

Emma didn’t answer.

“Hey Em, did you have fun at camp today?”

“YES!”  Emma said bouncing up and down.

“What did you do?” I asked.

“Swam in the lake!  Emma had so much fun!”  Emma said.

“I’m so glad, Em.  Do you want to go back tomorrow?”

“YES!”  Emma shouted.  “Sleep wake up get on the bus with Nickey and Joe go swimming in the lake!”  She said very quickly.

“Sounds like an excellent plan,” I said.

And that’s exactly what she did.

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A Wish

Posted on July 27, 2010 by | 1 comment

The parent of a severely disabled child asked me a few weeks ago what I wanted for Emma.  She was referring to the long term, the far off future.

“I’m assuming you’re not expecting her to go to Harvard,” she said.

Well no, I thought.  That has never been a goal for either of my children, but I didn’t say that to her.  Instead I said, “I want her to be able to live independently.  I would like her to have friendships, to be able to find something she loves doing and takes pride in.  I would like her to be a kind, thoughtful person who is able to contribute in some way to society and our world,” I stopped for a minute.  “I guess I want her to feel good about who she is in the world.”

She nodded her head.

When Richard and I decided we wanted to try to have children we spent many hours discussing our views on parenting and childrearing.  We were in agreement with almost everything.  Neither one of us cared what college our child went to or even if they went to college.  We both agreed we were more concerned with our children finding a career they loved.   We agreed we wanted them to be kind, to be generous, to consider others and to behave in ways which foster that.  We agreed we did not care what their sexual orientation turned out to be and we did not own them.  We both felt strongly our children, if we were lucky enough to have any, were not an extension of ourselves, but independent beings.  We agreed it was our duty to guide and advocate for them until they were old enough to advocate for themselves.

When I was pregnant with Nic I asked my mother if she had any advice for me.  She said, “Love them with all your heart, tell them how much you love them as often as you can and one day they’ll forgive you.”

It was the single best piece of advice anyone has ever given me.  We as parents will make mistakes, we will use a harsher tone than we meant to or are even aware of, we will say things in anger we didn’t mean, we will model behavior that is not always exemplary, we will do things we wish we hadn’t.  But we can say – I’m sorry.  I made a mistake.  And we can convey our love for our children as often as we are able to.

When Richard and I first received Emma’s diagnosis we were given a barrage of information.  We were told to get Emma between 35-40 hours a week of ABA therapy.  We trained with the ABA coordinator so we could continue using ABA with Emma after the therapists left.  I remember thinking after the hundredth flashcard maybe I should just hold her.  Emma wouldn’t let anyone else hold her, but if I sat in the rocking chair she would crawl into my lap.  I would put my arms around her with her head resting on my chest and we would sit like that together for up to an hour sometimes more.  During that early period it was the one thing I felt I could do with Emma, which no one else was able to do.  It seemed more important than forcing her to do yet another puzzle or one more sequencing game.  I reasoned, for a child who appeared emotionally cut off from other human beings, holding her was a kind of therapy too and perhaps as essential if not more essential than any of her other therapies.

Those hours spent with Emma in my lap were bliss.   Whether the physical affection made a difference or not I cannot know for sure.  My guess is it did and continues to make a difference.  To this day I remember as a little girl sitting between my mother’s legs by our swimming pool and leaning my small body against hers, her arms wrapped around me.  There is something about physical touch, which promotes a state of well being unlike anything else.

It is that state of well being I wish for both my children.

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Joe

Posted on July 26, 2010 by | 4 comments

Yesterday Richard, Emma, Nic and I went to a post wedding party for Joe, Emma’s therapist and Joe’s wife, Angelica.  It is always interesting going to a function together as we never know how Emma will behave.   Will she have a meltdown?  Will she insist on leaving right away?  Will she be so utterly unmanageable that we spend the entire party racing around after her?  When it is a dressy affair, one with speeches and food, which she will have no interest in, it becomes all the more worrisome.  We knew we had a better chance things would go well by the very fact that this was a party for Joe and Emma adores Joe.

Still, we did our best to prepare her before we left.

“We are going to get dressed up, then take a taxi and see Joe!” We told her.

“See Joe!” Emma repeated, nodding her head and twirling in place.

“That’s right Joe and Angelica,” I said.

“It’s a birthday party,” Emma concluded.

“No.  It’s Joe and Angelica’s party celebrating their marriage,” I said, not sure how else to describe a post wedding brunch.

“A wedding-birthday party,” Emma said.

“Well, sort of.  But it’s to celebrate their getting married,” I explained.

“Okay,” Emma said.

“There’s going to be food there and lots of people…” I said.

“And Joe and Angelica!” Emma interrupted me.

“That’s right.  Joe and Angelica will be there.”

“Angelica!  Angelica!”  Emma sang as she twirled in place.

“And there will be a few speeches and we will see a video and then we will come home and change,” I continued.

“Go to Chelsea gym bowling,” Emma said.

“Yeah.  Okay.  We can go bowling at Chelsea Piers afterward,” I said.

“Go with Mommy and Nickey and Daddy,” Emma said.

“Exactly,” I said.

“Okay!  Emma put on a party dress,” Emma said.

“Yes,” I said.

The party was lovely and Emma was terrific, on her best behavior.  Joe’s niece was there, an adorable two-year old in a party dress similar to Emma’s.   They ran around together, though in truth it was Victoria’s exuberant friendliness, undeterred by Emma’s less than attentive response to her, which kept their interactions going.  If Emma sat down, Victoria sat down next to her.  When Emma took her shoes off, off came Victoria’s shoes.  When Emma ran around the room waving her arms, Victoria followed waving her arms as well.  It reminded me of how neuro-typical children behave.  They follow the older child and often mimic them.  Emma never did that.

People ate and chatted with one another.  Both Nic and Emma ran around with the two other children there.  Then Joe stood up to give his speech.  Emma sat down and remained quiet as he spoke.  It was a heart felt speech, incredibly moving and left many of us in tears.

When it was my turn to give a speech, I pulled out my notes.  I had decided, when considering what to say, that perhaps I would use at least some of my time explaining exactly what it is Joe does.  I think it’s easy for people who know nothing about autism to assume he is a glorified babysitter.  Someone who hangs out with Emma and takes her to the park.  This could not be farther from the truth.

When Richard and I went to Bethesda to train in the DIR/floortime method with Stanley Greenspan, who invented it and his son Jake, we were exhausted before the day had ended.  Attempting to engage and evoke language from an essentially non-verbal child who is uninterested in any form of interaction is like nothing I have ever done.  It is physically and emotionally exhausting.  It requires a creativity, quick-thinking, concentration, focus and patience most people simply do not have.  Richard and I have met hundreds of therapists over the years, some have it and many more who do not.  The idea that anyone can effectively work with autistic children is just not true.

Joe is the ninja master, the autism whisperer.  He has a talent for it, an intuitive sense, which I have had the pleasure of observing many, many times.  Joe is not just a gifted floortime therapist, he is also a well trained one.  It is a formidable pairing.

And yet, what I have witnessed time and time again is how Joe and others like him are undermined, their work is seen as little more than babysitting, their profession consistently undervalued.  Devoting ones life to helping children with special needs is a noble calling.  Joe is royalty among the noble.

It was with these sentiments that I rose to give my speech.  I cannot say I got through it flawlessly because I did not.  I stumbled and I had to refer to my notes, I choked up several times and at one point had to stop speaking, as I was completely overwhelmed with emotion.  But mostly I wanted others to understand the importance of what Joe does everyday.   Joe has transformed Emma’s life in untold ways.  His commitment to her, his dedication to her has formed who she is and who she will become.

One story I forgot to mention yesterday was when we were having a hearing with the Board of Education.   Joe had testified as to what he does with Emma.  Richard and I had also testified regarding Joe’s contribution.  During the final cross-examination by our attorney of the attorney for the Board of Education regarding some of her arguments, she looked up from her notes and said, “Well I don’t know.  I’m not a Joe Kennedy.”

When I am with Emma during one of her legendary meltdowns I am fortunate if I have a momentary reprieve when I am able to ask myself – what would Joe say or do in this situation?  The times when I am able to emulate Joe are the times I know I’ve done the right thing.

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Posted in Autism, DIR - Floortime, Parenting, Siblings, Speech, Stanley Greenspan

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