Wednesday, August 31, 2011

Birthdays, Toilets and Celebration

In the past, with each passing of another year, I would suffer a little more imagining what my son, Ian's life would be like if he never got out of diapers.  How will he be treated as an adult?  Will he be treated with compassion and respect?  

These were old thought patterns that created tremendous stress and emotional pain. 

I began turning those patterns around three years ago through The Work of Byron Katie.  As my experience with The Work continued, I built more and more evidence that if I changed my inner mind, the external world followed.  It may sound crazy and counter intuitive but I promise you it works.  But don’t take my word for it.  I invite you to test it for yourself. 

Here’s one example of a big shift that starting in my mind and now shows up in the external world. 

Up until about eight months ago I didn’t know if Ian would ever be out of diapers. 

Then one day, I made the decision to start believing he would be potty-trained by Christmas.  

The original thought “Ian will never be potty trained” created great stress.  The new and improved thought, “Ian will be potty trained by Christmas” felt like freedom.  I couldn’t know for sure if either thought was true so why not believe the more peaceful, freeing thought?  Made sense to me.

It didn’t matter that I had no clue how it would happen. 

I just trusted that it would.  

So, that’s’ where I began to focus my attention, on all the evidence of how he would be potty trained by Christmas. 

Up to this point, he had peed in the toilet a couple of times a week after sitting for five minutes.  But once my new thought/belief anchored into my mind, an interesting thing started to happen. 

He began to pee in the toilet more and more frequently. 

Ian with Mariola, a MNRI specialist from PolandIn addition to shifting my thought pattern, he also attended the Masgutova Family Conference in San Mateo in January and August 2011.  Her work involves neurosensory reflex repatterning through physical movement and as I watched the specialists work with him, I realized there are many parallels to Byron Katie’s Work.  

The specialists would repattern the nerve circuits (old thoughts) in the brain with new patterns/movements (new thoughts).  Building and building with repetition (evidence) to create new neural pathways for the new patterns (new thoughts).  They did with his body what I did with my mind.  Creating new neural pathways with new input.  For me, it was a thought, for him, it was a movement.  But the concept was the same.  Shift the mind and the body follows. 

Then last week, for the first time, he went to the bathroom door and knocked on it to let me know he needed to go in. 

He sat on the toilet and didn’t pee.  But that didn’t matter.  I trust that will come.  He’s making the connections. 

Just yesterday he peed on the toilet 5 times in a 24-hour period and sometimes within less than 10 seconds of sitting down. 

It’s happening, he’s developing the awareness of his body and I believe part of the success is he knows I believe he will do it. 

The power of intention continues to hit me on the head as if to say, sweetheart, this stuff works! 

Where you direct your attention, that’s what expands.  Once I shifted my attention to the belief that it will happen, to my delight, it’s happening. 

Why I believe this works?  

Because once I set the intention and let go of the how it will happen, I’m open to all the possible ways to support the process. 

Each step reveals itself right on time. 

I believe the Masgutova Conference plays a huge role in his process of increased body awareness as well as the caregivers that gently encourage Ian to sit on the toilet and relax, and his brother cheering in celebration when he hears Ian peed in the toilet again.

We’re celebrating on a daily basis in the Hunter home.  But then I remind myself, of course he peed in the toilet.  That’s exactly what’s supposed to happen.  :)  Ian will turn 10 in February and you bet we'll be celebrating!


As a Mind-Body and Equus Coach, Diane Hunter helps parents reconnect with their inner guidance system to find a sense of peace and a deeper connection with themselves and their child.  She writes on her blog to share her stories with others and share how to listen beyond words, open up to the power of non-verbal communication and find freedom from physical and emotional pain.  On most days you’ll find her hanging with her greatest teachers, her children, and her husband in their home in Los Gatos, CA. 

Monday, August 29, 2011

Ms. Ginger

There was a party for Ginger today.


Ginger is an elderly woman who has lived on our street for over fifty years. She is moving into a home for senior citizens. She rides a trike with two big orange flags up and down our street and all over town. She knows everyone. She is a former special ed teacher. She is always checking in on me, encouraging me to take good care of myself and get regular breaks. She's even more adamant about it now that we're homeschooling. She often stops by with a post-it note bearing the phone number of someone or other she thinks will be helpful to me. She's one of the folks who donated toward Riley's service dog.

She doesn't take autism lightly. Even the "high functioning" kind. She "gets" it. It makes sense that a lot of people who do understand are teachers. Those who have had opportunities to see our kids in situations which are prolonged and which challenge them. Not just little snippets of life where everything is going their way and they appear "fine."

People who "get it" have no idea how much they touch our hearts.

I'm so happy to have known Ms. Ginger, and I'm really going to miss having her on our street. Luckily she's already invited us for coffee at her new digs.


Michelle O'Neil is the Author of Daughter of the Drunk at the Bar. She blogs at

Sunday, August 28, 2011

The Bumpy Bridge and the Big Man on the Beach

Eager to enjoy the last few sunny days of summer vacation, the boys and I drive to our local playground. I am surprised to see the parking lot jammed with SUV’s and mini vans. It appears that I am not the only one saddened to see the warm, lazy days of summer come to an end.

The park has a playground area nestled under the shade of several large pine trees. There are many wooden climbing structures, a collection of slides, and a large truck tire swing that sits in the middle of the park.  A thick covering of wood chips and fragrant pine needles soften the ground. There is also a small beach area that overlooks Pentucket Pond where Mallard ducks and cormorants frolic on the sandy shore. 

My vehicle no sooner comes to a stop and Weston is out the door, one hand clutching a beach towel, the other hand holding his sneakers.

"Later Mom!” he shouts as he runs toward the beach.

“Stay where I can see you,” I shout.

“OK Mummmm,” he answers, annoyed with my motherly concerns and completely oblivious to what I have said. Like a flash he is gone.

Nicholas and I climb slowly out of the vehicle.

“Where do you want to go first?" I ask Nicholas, knowing exactly what he is going to say.

“The bumpy bridge!” He answers with a wide smile. He reaches for my hand.

The bumpy bridge is a miniature version of the rickety wooden bridge in Indiana Jones and the Temple of Doom.  It has been built on chains so it sways precariously back and forth. It hangs only a few inches off the ground but climbs over large truck tires from one side of the playground to the other. There are ropes on each side of the bridge for children to use to help steady them, as they cross the creaky wooden structure. Few children need to use these railings as they run easily over the swaying planks, maintaining their balance thoughtlessly as they advance full-speed-ahead to the awaiting wooden castle.

For my son Nicholas, the bumpy bridge is not just a crossing device to get to the pretty castle. To him, it is like a gym, a place for him to exercise his muscles. It is an obstacle course. Like Project Adventure for kids, where he is free to practice his climbing skills and develop the confidence that most children instinctively posses. The bumpy bridge has steep hills. Every step causes the bridge to sway. This disrupts Nicholas’s under-developed sense of balance and although he is nine years old, his low muscle tone and lack of coordination make it difficult for him to stay centered.  He crosses the bridge like he is crossing a thin sheet of ice, he chooses his steps carefully. He must stop often, using the rope handles to steady himself.

The bumpy bridge is, by far, Nicholas’s favorite activity in the park.

Nicholas is noticeably taller than the other children on the playground. They swarm past him like bumble bees flying quickly and confidently over the bridge to the painted castle. I take a seat on one of the wooden benches. Nicholas looks over to me for reassurance. I give him the mandatory secret thumbs-up sign. He winks and smiles, ready to begin his perilous journey across the bumpy bridge.

Holding my breath, I watch my son climb slowly and carefully. After several minutes, he finally reaches the castle and stops for a moment to rest, wiping the sweat that has started to roll down his face. He looks at me again and waits for our secret sign. While the other children wiggle their way into the castle, Nicholas stops, and turns around. He is not interested in joining the other kids in the coveted castle. He is more interested in crossing the bridge again. Only this time, I notice, that like the other more nimble children, he is trying very hard not to use the rope handles for support. He moves even slower now desperately trying to cross the bridge without touching the ropes, the sweat pouring from his face.

Soon, another band of giggling preschoolers comes charging toward him. I take a deep breath and pray they don’t knock him down. He grabs the handles and stops. The mob of children passes all around him. I am ready to hear him scream, but instead, he smiles at them. He is not jealous of their ability to cross swiftly and easily.  I, unfortunately, am having trouble suppressing this unhealthy emotion and feel saddened that my son must work so hard simply to cross a bridge.

As I continue to observe Nicholas, I notice that he is happy. He is enjoying every one of his careful steps. When he starts to wobble, he smiles and grabs the handles. And when more droves of children almost knock him over, he smiles again, enjoying every second of his tiring adventure. He is exhilarated and anxious to continue practicing the art of crossing the bridge with no hands. He is uninhibited by his differences. Instead, he embraces them. He does not obsess about the meaning of the word “normal”. To him, he is the normal one, finding pleasure in the simple act of crossing a rickety bridge.

After several crossings, Nicholas starts to tire and tells me he is ready to go home. We head over to the beach area where Weston is playing. As usual, in the beach environment, Weston has found the perfect place to expel some of his restless energy. A group of small children has assembled around him. Like the Pied Piper of Hamlin, he is leading the tiny tanned tots in a game of skip the stones. Weston’s gang of miniature beach combers search the sandy shore for flattened artillery.

“I found one,” the boy in the green shorts shouts. He runs over to Weston and hands him the precious rock.

“Dude,” Weston says coolly, “That’s a good one, why don’t you throw it?” He encourages the timid boy to throw the stone.  The boy winds up and throws. The rock bounces off to the left and plunks hard into the water.

“Nice try guy,” Weston says, encouraging the boy to try again.

After a difficult year at the middle school, Weston has found himself this summer. He has discovered that in a new environment like the beach, his boundless energy and keen senses are just the helpful skills he needs to make plenty of new friends and find interesting treasures. The same traits that got him in so much trouble at school now help him to navigate and flourish in the beach environment. The damage to his self-esteem is finally repaired as Weston learns that there is a lot to like about himself.

“Weston, it’s time to go,” I shout.

“Awwwww Mummmmm,” he answers, “See ya latter guys,” he shouts to his gaggle of giggling groupies.

As Weston, Nicholas and I drive away from the playground, I reflect on our summer vacation adventures. Each of my children has faced difficult aspects of their diagnosis, and yet each has found a way to overcome. Nicholas found his courage while crossing the bumpy bridge. Weston found it leading a group of small children on the beach.  Perhaps each of them crossed their own bumpy bridge this summer, both boys concentrating carefully and choosing his own pathway across the difficult terrain.

I am sad our summer adventures are over, but for the first time in a long while I am looking forward to fall. I know the rope handles will always be there if I need them.


Please come visit us on our blog at Read about our adventures weathering Hurricane Irene.

Saturday, August 27, 2011

Cracks in the Windshield

  Almost 10 years ago I witnessed my youngest niece being born

In the delivery room, it was me that cleared my throat amidst the room full of rapidly moving nurses and asked something along the lines of

"Uh, I don't know much - but isn't that the babies head?"

Moments later she came into this world

It seems like yesterday

It seems like a lifetime ago


I try to live my life without regrets. Regrets are such a waste.


I was already a big part of my older nieces life

We took her for March Break and/or during the summer

We made trips to her town 3 hours away to spend time with her

We went to all of her birthdays

I sent cards and little gifts "just because"


I had plans for my youngest niece

She had a piece of my heart, a bond like no other


And then I became a mom

And next thing I knew, she was turning 10

Last year our world shattered and fell down around us

As we picked up the pieces I realized

Rather than shattering suddenly

Our life had been cracking under the pressure, lines snaking through like that of a windshield

first a small stone chip or two

As time went on, often almost immeasurably, the cracks lengthened

until one day it all shattered


For 9 years the cracks had been creeping through our life

Not unnoticed, but each crack noted, possibly obscured in some way

(because if you don't see it, it's not there don't you know?)

and then purposely forgotten about

denial being a marvellous and powerful thing at such times


Our son needed so much

required so much of us

struggled to fit in the world around him

We lost friends, stopped going out

We gave up on parties and group outings

We struggled and more times than not failed to make it to family occasions

We had good reasons

We were doing the best we could

But we lost sight of the cracks and what the sum of them would mean


My niece will be turning 10

So many years lost with her and her sister

But this past week she and her older sister came to visit

Because enough was enough


I needed to be their Aunt and they needed to know that they are part of our lives,

that they fit

that they belong too


They came here for almost a week

It was amazing and exhausting and exhilarating

For all of us


We planned and shopped for my nieces dream birthday party - her and I

Today we pulled it off

Just for her

To make her feel special

To let her know how much we love her and how amazing she is

My husband held down the fort at home

We made it happen


I love my nieces

And as they lived their lives here this week

I tried not to feel regret

that the cracks in our life have kept us apart so much


I tried to focus instead on creating memories

And finished the job on that windshield

I smashed it and threw it away

in the trash where it belongs

We are living this life sans windshield

We have had enough of those annoying cracks


Instead we will feel the wind on our faces

Sun on our hair

Perhaps some bugs in our teeth

But we'll do it all together

And we'll be singing at the top of our lungs


mom2spiritedboys is the mother of two very spirited boys and is now embracing extreme parenting in the trenches after trying to fight it for many years. She is married to a wonderful man who works hard to ignore the state of disrepair of their home and made her the happiest woman on earth when he took over laundry duty in its entirety in September 2009. You can read more from her at her personal blog Spirited Blessings

Friday, August 26, 2011


“The best journeys answer the question that in the beginning you didn't even think to ask” - Jeff Johnson, "180º

After we learned of my third child's brain injury, I had nothing but questions to ask of God and anyone else who would listen. I quickly created my own answers instead of waiting patiently for the answers to 'appear.' I created a truth that became 'my version' of reality.

I told everyone I could about how a doctor caused the brain injury to my daughter. I quietly told myself that I wanted him to rot in hell because of what he did to my family.

Anger consumed me. I went to bed angry. I woke up angry. I wrote angry. It was the easiest way to handle the reality of having two of my three children with special needs.

Therapy helped. It helped me understand that I was going through post-traumatic stress disorder. It helped me understand the importance of mindfulness. It helped me learn to meditate.

I continued to write, albeit with less anger, but still from a dark, bitter-cold place. The writing became a distraction from grieving. It became a call for help. I wanted people to feel sorry for me and my family.

But then I met someone. It wasn't a priest, preacher or a rabbi. It wasn't a therapist. It wasn't another parent of an individual with special needs.  It was a professional writer who taught me that my writing sucked, without ever telling me that directly. 

As I recalled our conversation over coffee, I can now say it was the point in my life when I decided that instead of stepping off the cliff in front of me, I turned 180 degrees, and took one step forward.

“Everyone has problems,” he said.

“But not my kind of problems,” I said.

“Maybe not exactly, but everyone has problems. Everyone is suffering in some way. Eventually, they will tire of reading about yours.”

“Think about those moments with your children, with your wife, with your friends and family and capture those, write your heart out about those. What would happen then?”

After this conversation, I changed, one step at a time. I changed my writing, and have continued to do so. I'm happier as a result.

Sure, I've done other things, including meditation, reading, working daily on me, and enjoying every single moment with my family. However, I'm capturing the most positive moments in time that I can. These are the ones that are most important.

While there are times and places for sadness, to let it run its course, I want to remember and live in the moment life when life is its best – and eventually my life starting being its best, all of the time.

This parenting journey has taken me to a far off place I didn't know existed. As important as the questions I'm asking are the places that I'm finding the answers.

I've found that the answers are not 'out there' in some obscure place but rather 'right here' inside, where they were there all along.


Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog:

Thursday, August 25, 2011

Person Who Hopes

All summer long I wait.

I wait for that first day of school. I wait to figure out what quirky things have come up over the Summer that the schools will need to address to get and help the kids stay on track.

I also wait for the other shoe to drop. My son is entering middle school this year and we're grateful we were able to get him into a private school for kids with learning differences (thank you state scholarship!).

As of today, we're only day 3 into it for him but I find myself still not quite exhaling. New people, uniform, switching classes, higher intensity and new requirements. It is for sure that our public school would have also had the same pressures (sans uniform) but since my son doesn't have anything to compare it to, I fear he will shut down and blame not liking school on this particular school.

See? While I have anxiety for his and his sister's situation, I'm still full of hope each and every new school year.

I am stunned by this, all of a sudden.

I'm stunned that through everything we've been through that I still believe our kids can have a successful year by growing and learning and participating. If I didn't, I suppose I might want to crawl under a rock for a very long school year.

I am finding that I thinking a lot about the word Hope. I am a Person Who Hopes, but does it somewhat privately. It's because I try to be realistic too and I suppose that makes me a sometimes Closeted Person Who Hopes, all the while I am pushing the hope down. 

"Keep the hope low, because something is around the corner and it will blow up, you know it will!" I tell myself.

I probably am thinking about this a lot because...I hope he gets some confidence in this environment, I hope the IEP is in place and being implemented, I hope that they can hold it together, I hope the other kids don't tease them for their differences...I hope...I hope!

I think about hope because the kids make me. I'm sure it's their undeniable spirits; especially during the times that they want to participate in life fully. I think that all of our kids with differences...all of them, Our kids, they're amazing.

So every year about this time I'm thinking, "This is it! This is the year!"

I hope. Well, I want to hope.

Julia blogs her family's story at Kidneys and Eyes and owns a social networking site for special needs at Support for Special Needs. You can find her drinking diet coke, working to pay insurance premiums and vintage photo collecting. Her social media portal is Slice of Crazy Pie. Clearly named for her life.

Wednesday, August 24, 2011

When somebody loved me

My son Ben, 17, loves Jessie, the red-haired cowgirl from Toy Story.

If left to his own devices, he'll surf the internet to listen to her soulful song, When Somebody Loved Me, over and over and over again.

We may hear it in English, or Spanish or Portuguese.

He will proclaim his love for Jessie (I love Jessie, he'll sign).

Why was Ben so drawn to this song, I wondered. But listening to the lyrics, I think it's somewhat of  a metaphor for Ben's life.

When somebody loved me,
Everything was beautiful
Every hour we spent together lives within my heart
And when she was sad,
I was there to dry her tears
And when she was happy,
So was I
When she loved me

So the years went by
I stayed the same
But she began to drift away
I was left alone
Still I waited for the day
When she'd say I will always love you

Lonely and forgotten...

I wonder if, like Jessie in the song, Ben feels the ache of staying largely 'the same,' while everyone around him grows up and drifts away.

He had friends at the elementary school he went to. But they've all progressed at an amazing pace and he wasn't able to keep up. They'll soon be graduating from high school and going off to college.

If only Ben could live in a world where the rules were simpler and no one got left behind.

Tuesday, August 23, 2011

Chill, Baby

If I hear one more time that the primary purpose of high school education for children with disabilities is to prepare them for work, I am going to scream. I wrote last week about Ashley not getting History or Science in high school because ‘she doesn’t have a history or science disability.” Her IEP draft was full of ‘vocational’ goals and objectives, and if the school district staff asked me yet again if I had ‘connected’ with vocational rehab agencies for Ashley, I might just have told them where they could stick their sheltered workshop job.

I understand that our children with disabilities may need a little more time to prepare for the workforce, but seven freakin’ years??? That seems a tad excessive to me. Heck, I can start listing the names of many non-disabled high school students who were not prepared for adulthood and the workforce when they left high school. And, are our children to have no other focus in their lives once they turn 14 years old? That’s pretty sad if that is what the school district believes.

Why shouldn’t our children with disabilities be entitled to the same work-life balance being promoted for those without disabilities? (Work-life balance can also be applied, imho, to education-life balance).

According to a survey conducted by the National Life Insurance Co., four out of ten employees state that their jobs are "very" or "extremely" stressful. Those in high stress jobs are three times more likely than others to suffer from stress-related medical conditions and are twice as likely to quit. The study states that women, in particular, report stress related to the conflict between work and family. Do you think our children with disabilities can also suffer from stress? Heck, their lives are often nothing but stress.

The number of stress-related disability claims by American employees has doubled according to the Employee Assistance Professionals Association in Arlington, Virginia. Seventy-five to ninety percent of physician visits are related to stress and, according to the American Institute of Stress, the cost to industry has been estimated at $200 billion-$300 billion a year. What do you think the costs will be if a person with a significant disability experiences stress and burnout?

Ashley loves art – and music – and plants – and shopping – and traveling – and reading – and math – and science. Restricting her enjoyment of those things during her remaining school career – approximately seven years – will not a happy future employee make. And don’t even get me started on the preconceived notions about the type of work our children with significant disabilities will be targeted to perform. Trust me, if you ask Ashley to stuff envelopes for eight hours a day, five days a week, envelopes won’t be the only things getting stuffed.

School districts need to lighten up. Let our children with disabilities enjoy their high school years as much as non-disabled students. Don’t start them down a path to stress and then wonder why it costs so much to provide care for them later in life.

Chill, baby….

Monday, August 22, 2011

Paying it forward

   Tomorrow I will drive my oldest to participate in a study on Autism.  We will leave early in the morning, drive over an hour away, and navigate through traffic to find a parking spot.  Then I get to watch my son endure 1 1/2 -2 hours of testing while I answer questions as well.  Why?  We go in the hopes that our participation will help—in some small way—to provide a better understanding of Autism.  C. is just one participant.  Early next month I make the same trek with his younger brother for the same routine.  There are no benefits for us for doing this.  On the contrary, this isn’t easy to commit to right now.  Yet, this is our way to thank the countless families who preceded us and to add our piece to the gigantic jigsaw puzzle that is Autism.

     Honestly when this opportunity came up, I hesitated for a moment.  I knew what it would entail and what an ordeal it would be, especially with the little guy.  However, I thought of some Mom out there, a few years in the future, that might benefit from the research that is being done.  I thought of how I benefited from the parents who endured countless questions and studies when the understanding of Autism was in its earliest stages.  Not that we know so much about the big “A” right now…but it is more than we did.  And maybe, God willing, it will be more in the future.  Maybe this study might help with one more aspect, better awareness, lead to one more child being diagnosed earlier so that earlier interventions can begin.  Maybe, just maybe…it might open the door to even more.  I can only pray.

   There are so many of us parents out there who deal with our children’s issues day in and day out.  Parents who are on the front lines of a battle we did not enlist in or choose to engage in but do so nonetheless.  We stand on the shoulders of those who came before us, who fought for answers, fought for rights and education, fought for information and fought to make it better for the next group of parents who came after them.  There are some of us who are the next generation of soldiers and those of us who are pioneers blazing trails with issues that may not even have a name yet.  All of us make a contribution through our children.  All of us keeping moving our respective causes forward in our own ways.  It won’t be easy sitting there and being brutally honest about my son’s life and how he interacts in this world.  It will be hard and heart wrenching at times and yet liberating to share it with someone else in other ways.  It is what it is I keep telling myself. 

   Tomorrow, I hope to do my small part by taking my firstborn to help some other parent I’ll never meet.  I may not be tall but I’m willing to allow someone else to stand on my shoulders so they can stand taller tomorrow.  We never know when a “yes” might be the piece of the puzzle that brings the picture into focus.

Sunday, August 21, 2011

Disposable People

Like most US citizens, I've spent hours and hours watching budget debates in recent months. As the crisis reached its peak in early August, I remembered this post. I know that all of you, as parents of children with special needs, some of whom will never make any tangible contribution to society, will understand why.

*     *     *     *     *

When I was barely pregnant with Jacob, my friend Rachel had a baby, a little girl named Gabrielle. A lovely, tiny thing with a shock of black hair I was compelled to pet whenever I held her, she was Rachel's first baby.

Six weeks later, SIDS, that terrible night thief of babies, stole Gabrielle away.

It was every bit as horrifying as you imagine, and worse. Even now, I am pushing away my memories of Rachel in the days and weeks that followed. She was shattered, blistered all over with grief.

Because Gabrielle mattered. She was here, and then she was gone, and she mattered.

Three years later, Rachel was dropping her sister Josephina off at home after an evening out when Josephina's husband opened fire on the car. He killed Rachel, her sister, and a friend who was sitting in the backseat before he ended his own life.

I remember too well that morning in May, 1996. I stopped at a convenience store to buy a cup of coffee and a newspaper and there was my friend on the front page.

That weak-in-the-knees, dear-God-what-has-happened, the-whole-world-is-spinning feeling is way too familiar to me. Way too fucking familiar.

So now, with her mother gone and her family scattered to the winds, I visit Gabrielle's grave twice a year. I trim the grass and scrub the stone until it sparkles.

If I don't do it, who will?

Gabrielle was here, and she mattered.

In a world that insists constantly that some people don't matter, I need a ritual that says every person is important.

Why this post at this time? Because of the tragic story of Saiqa Akhter, the Texas mother who murdered her children Zain and Faryaal last week. My reasons are not exactly what you might predict them to be; it is not her actions but the world's response that has captured my thoughts.

I have no idea what illnesses of mind or body beset Saiqa Akhter and her family (though most reports indicate that at least one of her children had been diagnosed with autism). I can guess at what caused her pain because I have been to some dark and ugly places myself, but I don't know what corner she turned. I've never been to that place.

And this tiny voice at the very furthest reaches of my skull asks, maybe I didn't turn that corner because my family paid for Carter's private preschool so I could catch my breath. Maybe, during that dark time when I was far from acceptance, knocked off-balance, lacking the support that I have today, maybe... I can't imagine that, but I've learned too often that immunity is an illusion.

Another thing I can't comprehend is this: that so many people believe having compassion is equal to making excuses. I have infinite compassion for this mother, and what she did was inexcusable.

But that's a soapbox for another day.

I was reading the news coverage of this story and found myself (as I always do, glutton for punishment that I am) reading comments. Angry, bitter, hateful comments. Judgmental comments. Ignorant comments.

And then this: I don't see what the big deal is. We overvalue human life. These kids were autistic. They never would have made a real contribution to society, so who cares if they're dead?

I can see you, sitting there with your mouth open, your eyes wide with shock. I want to join you in your shock, to view this (anonymous, of course) commenter as an aberration.

But he's not. In fact, his sentiments mirror a cultural reality of which most people are entirely unaware: some of us are disposable.

Some of us don't matter.

Some of us are worthless.

Most of the comments I read about Saiqa Akhter's murder of her children were furious, hateful things about how she should have asked for help. Why didn't she call for help? Why didn't she call someone?

Of course, we have no idea that she didn't, but that's the faulty assumption that underlies everything: there is help. There is always help. If one asks, help will come.

If you believe that, I think some Hurricane Katrina survivors might like to have a word with you.

Because the kind of help that those commenters mean doesn't exist in most places. One person suggested that she should have called 911 and asked for an ambulance to come get her children.

That isn't how it works. I've heard more stories than I can even remember. Parents of an acutely suicidal nine year old girl took her to the ER where they were told to take her home and give her Benadryl. Children in the grip of florid psychosis are sent home from the hospital after 2 or 3 days. The waiting list for a 30 minute appointment with a pediatric psychiatrist here in Albuquerque is 6 months long. Schools don't have the resources they need to properly educate children with emotional and behavioral challenges. There are bed shortages, provider shortages, money shortages, every kind of shortages. 

We parents? All of those gaps are left for us to fill. There are huge gaps, enormous needs, long stretches of time, during which we are all alone, left to deal the best we can.

If you call an ambulance because you sprained your ankle, that ambulance will take you to the hospital (the paramedics will roll their eyes until they're dizzy, but they'll take you where you want to go). If you call an ambulance for a psychiatric emergency, no one is going anywhere unless someone is on the very brink of death.

I'm well read in the historical and political reasons for all of this. You can watch a wonderfully informative documentary about it here. It's complex, multi-layered, an impossible knot.

Except that it's not. It's one simple thing: some of us are disposable. Some of us don't matter.

Not "some people." Not "those people who are ill" or "those people who have disabilities" but some of us.

My ritual at Gabrielle's gravestone may seem silly, like a boy whistling in a hurricane, and that might be true. But if someone is remembering Gabrielle, then someone will remember Carter and every one of the other people who might never make a tangible contribution to society.

None of us is disposable. My penchant for moral relativism aside, I am right about this. The alternative is too terrible to contemplate.

Adrienne Jones lives in Albuquerque, New Mexico with her husband and their four children. She writes the blog No Points for Style.

Friday, August 19, 2011

The Fix

On August 16th 2011, Pudding asked me a why question. She was wearing a Hello Kitty top, blue leggings, and Disney Princess socks. I was drinking tea, attempting to warm up after a cool day in Johannesburg proved it really is winter here after all.

As she bounced into the room and her fingers explored every surface, they found the switch of the lamp. She flicked it on and off, as she has done every day since we arrived, but this time it didn't turn on, and for the first time ever she asked me why.

Just like that. So naturally and spontaneously that a stranger observing might take it for granted. But not me. Every detail is forever etched into my memory. The pounding of my heart and the giddy, elated feeling.

I can't tell you the day she first smiled, sat by herself, spoke her first word, stood alone, or even took her first steps. I have the memories, but they are pinned down to weeks, not days. Though I've been asked countless times on countless forms documenting her development, I give vague answers. 4 weeks, 5 months, 10 months, 12 months.

Those answers satisfy the professionals, looking to pinpoint when her development went awry.  But they don't satisfy me.

I have replayed those milestones over and over for the last two years, but I can't get more specific. The truth is that I didn't accord them the attention they deserved. I was the stranger observing who took them for granted.

Moments after she asked and I even managed to answer her question, I shared this milestone on Facebook. A friend commented that this would herald an exciting new phase of development- the why question being a "gateway milestone".

I had to applaud her choice of words. No longer the stranger taking milestones for granted, I am now a developmental junkie. I'm addicted to observing the miracle of development, not just in my own children, but in every child I encounter. I can't get enough, even when I have to be patient with a small stash. I knew that it was a year ago (and four days) since I'd written that Pudding doesn't ask why. I knew, because I've been waiting for this fix ever since.

When I first held Pudding and Cubby, I remember the sudden burst of love I felt for them. Already I was taking for granted so many things: their health, their strength, even their just begun lives. Never again, for either child. I take nothing for granted, appreciating just how fortunate we are.

Likewise with development. Whether milestones are hit strongly and surely (if a little tardily) in Cubby's case, or later and sporadically as with Pudding, I marvel at them, and the high that they bring.

At times I think of that stranger who soberly observed the milestones in her children. She never knew the intoxicating feeling that rushes through this addict as I witness the many miraculous milestones of everyday life.

After a few hours of riding this high came the inevitable comedown. Was this just appropriate echolalia? And just how long will it be until I hear the next why? I tried to shake my way out of withdrawal by focusing on how huge that milestone was.

Then yesterday at 8.47 am still wearing her nightgown she brought something to me. It was my GPS that I'd removed from the car for my husband to look at. Driving around unfamiliar streets in a new country, I'd been unnerved as it kept dropping the signal, or turning itself off inexplicably.

"Mummy, why is it not working? Is it broken, Mummy?"

Not broken, it just works in it's own way, on it's own time. I'm just going to have to be patient about it. But you, my sweet, you are the fix.


Spectrummy Mummy is finding that Africa suits us best of the three continents our kids have lived on so far.  You can read more about the global adventures of Pudding and Cubby at my blog, Facebook or Twitter.

Thursday, August 18, 2011


As I am writing this, I am out-of-town for my 30th high school reunion. Graduated from a small, Catholic high school – class of just over a hundred students. Probably about a third of us have come together to have a laugh, maybe even a tear, stroll down Memory Lane, and present the highlights of our life, as of today.

Don’t have the most exciting life to report on, as I told one classmate, “A good day is when the house looks the same when I go to bed, as it did when I get up. Spend most of the day with a sponge in my hand and talking about the ice cream truck.”

My new favorite thing to say is, “All roads lead to special needs.” Never was that more true than last night. Seems everyone has a child, nephew, niece, sibling, godson/daughter, good friend with a child, neighbor growing up, etc. One classmate actually runs a group home for severely disabled, nonverbal adults.

Didn’t intend to dwell on special needs, but hey, what else am I really going to talk about if the conversation goes on for more than three minutes? “So, where do you live? What do you do? Are you married? Do you have kids? How many? How old?” Soon as you answer those, and often, while answering them, it’s just unavoidable.

Made me think about my daughter who has one more year of high school, and in eleven short years will be going through the same drill for the first time. Where will she be living? Will she be married? Children?

And then there’s Rojo. He, too, will be part of a small, Catholic high school community. One, that until the minute he walks in the door, has not (intentionally) admitted special ed. students. He is in the inaugural class of kids that will be in a small cohort amongst 600 or so (for the most part) four-year college-bound students.

How will his tenth reunion look? His 20th? 30th? Who will remember him? Who will he still keep in touch with? Who will be excited to see him? Who will have stories? How will he answer all the usual questions?

My wish for both of my kids is that they will be asked, “So, are you happy?” and regardless of the other answers to the other questions, they will both be able to say, without hesitation,  “Yes. Yes, I am happy. “


Wednesday, August 17, 2011

Road to Acceptance

It's the one year anniversary of my first post here at Hopeful Parents.

That post, The Wheels on the Bus, was about my first public acceptance of my son's special needs.  I wrote about getting him off the van after his summer school program, and how it helped me come to terms with his autism spectrum diagnosis.  While never in denial about it inside my house, the van rides marked my first time showing the world that my son was "different" than the other kids on our block.

And now, one year later, I'm back on that road again.  This time with my youngest.  My two year old was diagnosed on the spectrum last week.

But this time, the acceptance isn't coming as easily.

In her book, The Five Stages of Grief, Elisabeth Kubler-Ross described the stages that people move through as they cope with loss and grief.  She lists the stages as denial, anger, bargaining, depression and acceptance.

When my middle son was diagnosed back in December 2009, I knew something was "off".  He needed help.  We needed help.  The diagnosis saved us, confirming for us that every missed milestone was as a result of this disorder, and not because of bad parenting or bad behavior.  The diagnosis "fit". 

I don't remember feeling grief at all.  It was more like relief.

This time...

This time I'm having trouble.  I'm firmly planted in stage one: denial.

I still don't see the red flags cited by the doctors in their evaluation.  I don't see the limited play skills, or the reduced eye contact.  I don't see the inability to follow through on an activity. 

I don't see how his refusal to sing "Happy Birthday" to a play-doh birthday cake is a sign of rigidity when he sings just fine at home to a Lego birthday cake.  I don't understand why it's a concern that he shut down after two hours of evaluators taking away a new toy every 30 seconds.  I don't see how a doctor can tell me that this is just the way my son is after spending an hour looking at him through a one-way mirror.

I still can't believe it.  And it doesn't help that the people who know my son are just as shocked as I am.

I know what I'm supposed to do.  I know what phone calls to make to get the early intervention therapy started, I know who to call at the preschool to get things ready for his IEP meeting when he's three.  I've informed his speech therapist and the school district about what services we'll need.  I've told friends and family.

This road to acceptance should look familiar to me.  But it's paved very differently this time around.  The first time, the diagnosis gave me the ability to explain my middle son's behaviors and difficulties.  I hit the ground running, ready to get him anything and everything he needed.

But I'm not running this time.  I can't even take that step out of denial.

A friend sent me this quote: “You never get good at grief. Just because you have done it often doesn’t make you good at it."

I have lived through grief before.  I will live through this again.

And I know at some point I'll get to acceptance. I'll just be taking baby steps this time.

"I always waste my time just wondering
What the next man thinks of me
I'll never do exactly what I want
And I'll sculpt my life for your acceptance
" - Road to Acceptance by Green Day

Alysia Butler is a stay at home mom to three boys, two who are now diagnosed with autism spectrum disorder.  When she's not filling out paperwork or making therapy appointments, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.

packing up hope


This is it, my friends. My last post - at least for a while - on Hopeful Parents. I've asked Christina to allow me to sublet my space to a dear friend. She is an amazing writer, a tireless advocate, an incredible mom and a hell of a friend. It's not my place to say more, but if it works out, I know you're going to adore her as much as I do. 

I have loved it here. I have been grateful beyond measure for this safe place of support and understanding. For the breaking open of my sense of what community means. For my fellow Hopeful Parents who have allowed me - all of us - the chance to share your worlds - your pain, your grief, your grace, your dignity, your healing, your love, your joy, your HOPE. 

For teaching me so much about honoring the truth of our experiences and why sharing them matters. For allowing me to find myself in your stories, no matter how different our paths may seem to be. For the reminder that pain is never a competitive sport. That we are in this together. That we have so much more in common than that which divides us. That we are not just fighting for our own babies, but for all of them. 

I hope you'll come find me on my blog, a diary of a mom  on twitter @diaryofamom and on diary's Facebook page, now almost 4,000 strong. 

Thank you, Christina and all of you who dwell here in this place of hope. It has been an honor to have contributed to this sacred space. 

Tuesday, August 16, 2011


A rushed and frenetic birth, the first I heard about my new baby came from my husband. "She has enormous thumbs!”  Other things were said, things about the doctor still being 10 minutes away, about the cord wrapped around my baby’s neck, about questionable apgar scores.  But I didn’t hear those things.  Only my husband’s seemingly proud exclamation about her thumbs.

I didn’t think anything was wrong.

They let me hold her eventually as they talked about low blood sugar.  She was tiny, just over 6 lbs.  I briefly considered what my mother might have thought when they handed me to her, her 8th child, weighing only 4lbs.  They advised that she wait to name me just in case.  But she never thought anything was wrong and called me Teresa.

As I held my own new little life, I was excited and tired.  She was not due for another 2 weeks and we barely made it to the hospital before she arrived.  The staff in the room seemed to be busy and urgently fussing.  But I had been through that with my first born, when the doctor immediately declared upon her birth that Cate had a club foot.  Without even looking at down at her tiny bent little foot, I knew even back then that nothing was wrong.

I held my second daughter just minutes old and called her by her name for the first time, Addison.  A flash of incomplete and inarticulate notions came and left quickly as I regarded the folds on the inner corners of her tiny almond eyes.  I did not know then they were called epicanthic folds.  No one else seemed to notice them, slight as they were.  But I did for a moment.  My thoughts flailed and then retracted.  “Hm, I’ve seen kids with disabilities with eyes like these.”  As quickly as it came, something held that wisp of a thought up in the air and let the wind take it away.  Despite looking at the same eyes for countless hours thereafter, the thought did not waft back or settle anywhere near this mother.  Because I knew nothing was wrong.

Nursing had been difficult for my firstborn and the first day or so looked to be the same for my second.  The lactation consultant came with the same rather obvious advice as I’d gotten 4 years back with Addie’s older sister.  But she also mentioned a high palette perhaps making things a bit more difficult. Still my baby and I toiled and tried and shifted and tried again. I did not have the stamina or distractability to wonder if something might be wrong, single-minded as I was on getting her fed.

In the middle of that hospital night, someone came to take her from me and feed her from a bottle.  I protested  - a déjà vu from my first daughter.  Testiness or despair must have manifested in my refusal as the medical professional used an authoritarian tone to enlighten me.  “You need some sleep.  I know you are concerned about your daughter’s prognosis, but you need to sleep so you can be rested and make appropriate decisions for your baby.”  I had no idea what she was talking about.   What decisions?  She needs to eat, sleep and be cuddled and changed.  I get it.  Sure, I realized we had taken her for a full body x-ray and a chromosome test within hours of birth.  The fact that both thumbs were wide and angulated made the doctor suspicious of a “pattern” that would need to be identified.  But nothing amazing was found in the x-ray and the chromosome study turned back nothing.  We said yes to these tests to get them to leave us alone with our daughter.  And now this professional uses  the word prognosis.  While I’d have been assured I could define it for you in the past, at that moment I had no clue why she should be using such a term in reference to my Addie.  To me, nothing was wrong.

Since her early years are a series of flashes, flash forward to various surgeries to correct her thumbs, her toes, to another surgery that was to entail a simple overnight stay.  That procedure parlayed into serious illness, 6 nights in hospital and a very buried subconscious understanding that it was remotely possible that she would not be coming home with us from this particular procedure.  But that understanding was so guttural and unwelcome, so ensconced, it never made it to the surface until after she finally was, indeed, home safe and sound.  There was no room for it in all that needed to be done, all that needed to be decided upon to help our sweet thing get to the other side of her grave and precarious situation.  Weeks later I watched her laugh and I knew that once again and perhaps still, nothing was wrong.

Addie has Rubinstein-Taybi Syndrome.  In her case, it presents with some physical issues, as well as some medical and cognitive differences.  Health crises aside, the most poignant aspect of her diagnosis for us is the fact that she is non-verbal.  We knew this was a possibility when she was eventually diagnosed at two and a half years old.  She had said only a handful of words before then and they seemed to be fleeting.  While she cannot gather her sounds into the planned, organized and repeatable patterns that lead to words, she is highly verbal in other ways.  She hums and buzzes and squeals, thrums and tongue taps in random (to us) ways.  She is nearly always making some sort of sound.  She communicates adeptly through her own personal innovations, through American Sign Language and through a computerized communication device.

People, both kids and adults alike, have at times overtly observed her for a brief or extended time and then, without guile, bluntly asked “What’s wrong with her?”

I have had to grow gradually in my view and response to this question.  It’s one I myself may have asked, if it weren’t for a mother’s stubborn focus on only those thoughts that actually help her child move through something , her complete selective obliviousness to those notions that lead to paralyzing negative mind-locks that hinder the small people she raises.  It's hard to answer that question when you have built up and hold tight to the belief that it's a moot inquiry.

In early days, this question asked by expectant strangers would slice me through and through.  I could do nothing but let it pass without response or on rare occasion, hurl a defensive zinger back, something meant to hurt the asker equivalent to my hurt, meant to permanently end the exchange.  Those were hard days.  The next phase was to generously meet them more than half way with the benefit of the doubt by pretending they had used the word “different” instead of “wrong.”  I’d answer by patiently and age-appropriately explaining the differences one with Rubinstein-Taybi might have.  This led to greater understanding about her diagnosis, but not about my daughter as a person.  They still thought something was wrong and now they had a name for it.

My current response is rooted in the belief that if I allow the word wrong to reference the whole person my daughter is, she can never be right, she can never be whole or unbroken, she can never be just the right person for the job – whether that job is weather watcher at circle time at school, a paid career as she grows, a favor or just being a friend.   If the asker were to address Addie with the question, “What’s wrong with you?”  they would get no answer, no credit for deserving an answer at all.

And so it goes now when I am asked - 

Lady at the table next to us at the bagel shop: What’s wrong with her?

Me (Worried look, quick movements toward my happy child, rapid talking progressing to slow and deliberate):  Wrong with her? Why?  Is she bleeding? Did you see what happened?  Adders, are you ok? Oh, I looked away for just a moment…well, that’s odd.  I don’t see anything - no bruises, no coughing, she’s not upset at all.   In fact, she’s smiling and signing, eating the bagel she just ordered herself (point to communication device briefly), waving her friend over.  Hm.  Honestly, nothing at all seems amiss, nothing appears to be wrong, so I’m not sure… (eye contact) Oh, hey, are YOU alright?

If she is ready to talk about disability and differences in ability, she will find a way to let me know.  If not, another day, another child, another mother.

Addie turned 8 yesterday.  I took her swimming at the small water park we belong to, which is not only a birthday wish, but her wish for every single day – granted on most days in the summer.  She began her measured ascent to the top of the water structure that blossoms from the middle of the kids' pool.  It branches out into slides and pulleys and a plethora of squirting spouts and spraying contraptions.  The climb takes her a while, but I understand I’m to wait at the bottom now.  She came to the very edge and looked down for me as I stood in ankle deep water, shielding the sunshine so I could see her face and await my cues.  

She intended to make it clear to me that she was indeed having a happy birthday.  Yes, she knew there would be her favorites later: pesto, garlic bread, singing, jokes, cake with extra frosting and presents.  But to convey her happiness with this very moment, she would initiate an ASL call and response.  It’s part conversation, part song and part dance for us.  Though the themes can change, 2 things are consistent: 1) she is the leader and 2) each turn is hurled and received with this ever present message between mother and daughter bundled with it – I see you as you are and you are exactly right.

The rest of the water park and its inhabitants continue at the usual clip.  Addie above and me below, we begin the process of slowing time, just for us.

Addie: Rainbow (signed quickly)

Mom: Rainbow (signed quickly)

Addie: Rainbow (signed slowly, a test)

Mom: Rainbow (signed slowly, a passing grade)

Addie: color red

Mom: Color red, color orange (protocol allows me to move to the next color)

Addie: color red, orange yellow

Mom: color red, orange yellow (here I must only repeat, anticipating her twist)

Addie: favorite? (devilish giggle as she lobs the first question, she thinks she has me)

Mom: orange, favorite? (touché)

Addie: Yellow.  Color green….

Our eyes never release the other's as we take turns - comments, questions, answers, laughs, slow signing, quick signing, exaggerated signing, stylized signing, changes of subject, returns to subject, etc.

This is our language, our relationship, our connection.  We understand how it starts, where it’s going and now to navigate it.  We laugh and shimmy with each turn.  Out of the corner of my eye, I can see other swimmers slow and pivot their eyes from Addie to me and back again.  Kids beneath me stop splashing a moment to watch; moms on chairs subtly raise their sunglasses and squint.  I venture they aren’t quite certain what they see.

But I do know they don’t see anything wrong.


Monday, August 15, 2011

Parenting with an Audience

It is day nine of our vacation and we are still halfway across the country from our home. We have been traveling all day to get from New Mexico to our home in Maryland. We have just finished dinner in the Houston airport, and my three kids, with my permission, run from one side of the airport hallway to the other wall to play a game on a display. Jack, my autistic 8-year-old, is nearly run down by a speeding airport cart, saved only by his stopping short and the screeching of brakes from the thankfully alert driver.

"The parents are supposed to be watching," I hear a young man chidingly say to his young female companion. I hear him from where I am standing, ten feet away from my child—watching him with both of my eyes.

"I am," I hiss at him.

I don't know if he heard me, but I do know that at least three other people I see are shaking their heads and rolling their eyes, and they're not judging the cart driver, who was driving so, so quickly through a crowded airport walkway. 

They are judging my son and they are judging me. They are taking the tiny amount of information they know about my family and they are judging us based upon it.

They aren't thinking about the fact that Jack is completely disregulated from a week and a half of travel. They don't know how well he has held himself together during our vacation. They don't know how hard I have worked to keep him and his two brothers safe, mannerly, and happy while they are so far out of their comfort zone. They aren't thinking about how having to look both ways inside a building to avoid being hit by a car is so out of context for my child that it would never occur to him to do it.

I am horrified that Jack was almost hit by a cart. I am embarrassed that I didn't stop him and that people are thinking badly of me and him. I am hurt and furious at the reactions of the onlookers. I am second guessing my actions as a parent. I am tired from more than a week of managing special needs kids in unfamiliar environments and stressful travel.

But most of all, I am done. I am so over people who judge others when they know maybe a third—if that much—of the story.

This is when it is hard to have a child with an invisible disability. My kids look just like every other typical child, but they are dealing with autism, ADHD, and sensory processing issues. They see, process, and react to the world differently than other kids.

It's not even really just about special needs. When you see a child having an irrational tantrum in a store, all you are seeing is the tantrum. You aren't seeing the autism diagnosis. Or you aren't seeing the fact that the child's parents are going through a divorce or that the family pet has just died. You aren't seeing that the child's parents unfairly yelled at him or that the mean girls in her class teased her earlier that day.

Yes, some kids are spoiled and sometimes children are just rude or badly behaved. But you can't tell which is which by watching an isolated incident. And no, special needs and extenuating circumstances aren't excuses for poor behavior. But they do shed light on the situation and perhaps illuminate why the child and the parent act the way they do. You can't know just by watching if the child and parent are misbehaving or if they are doing the very best they can.

I'm not an innocent either. Since having a special needs child, I am better at remembering that there may be unseen things at play when I see a child (or adult) behaving poorly, but, yes, I sometimes judge strangers based on ten seconds of observation. I try so hard not to though.

I don't give my kids carte blanche to behave any way they want. Trust me, I don't. You can ask them, they'll tell you. Nor do I accept any behavior that harms or hurts other people. And I'm not talking about letting kids off the hook for everything. I'm talking about strangers. I'm talking about people who roll their eyes and make snarky comments about people they have watched for a short amount of time. 

It can be so hard to parent. I wish that strangers didn't make it harder.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.

Sunday, August 14, 2011

Dear John (Preschool Edition)

A couple of weeks ago, I got an email. It was a “Dear John” letter of sorts, only it wasn’t that kind of a break-up letter. It was from my son’s preschool teacher. She wanted to let me know that she wouldn’t be returning to my son’s school this year. I was thankful for the personal note, but devastated at the content.

I’ve written about Moe’s teacher before. She is everything you’d want an autism preschool teacher to be: kind, supportive, smart, patient, and above all, experienced. My heart still sinks when I think about that letter. In it, she described how her husband found a job in another city, how they’ve always wanted to live near the beach. “It’s not you, it’s me,” I thought. I’ve heard that one before.

To be polite, I asked what she would be doing, thinking there’s no way she could have found another job so quickly. But of course she did. Mrs. M described the new autism preschool class she would have. My heart filled with jealousy. “If we can’t have her, no one can!” I pictured all those little kids, laughing and singing with our Mrs. M. They won’t appreciate her like I do. Those kids won’t be as cute as my Moe. She’s going to realize she made a huge mistake.

In all seriousness, I don’t have to tell you how important a good special education teacher is. And I know we got lucky. When we moved into our house, we weren’t even married yet, let alone worried about schools. We had no idea we would need school district services so quickly, and were fortunate that our district had good ones. We even put off moving to another house this year because we didn’t want to give up our place in this program.

There is a good chance that Moe’s next teacher will be just as excellent as his last one was. After all, it takes a certain type of person to teach autistic preschoolers, especially those like my little trouble-maker. My mom reminds me that in school, kids usually get a new teacher every year anyway. And I realize that my apprehension has as much to do with my resistance to change as it does with the idea of a new teacher. But when you’ve got a good thing going, you don’t want it to end.

It’s been a long, tough summer. So, we enter the new school year – just a week away! – with excitement and a little bit of apprehension. I hope it is a successful one for Moe, and for all of us Hopeful Parents.

Saturday, August 13, 2011

The Trouble With Friends

My son worked at a job for his fourth summer this year, and had, maybe, the hardest time. In some ways, he's certainly more mature and more skilled than when he started the summer before his freshman year in high school, but there was one factor I hadn't realized would throw him so for a loop.


Friends are great. Friends are what we want our kids to have. Friends are the people you feel comfortable with, the people with whom you can be yourself, the people who love you just as you are. And that's great when you're talking about kicking back with buddies after work.

At work, turns out they're a distraction. And an instigation to silliness.

My son's best buddy worked with him for the first time this year. He's a quiet guy who wants to do well, and helping him learn the ropes should have brought out the best in my guy. However, he also has a sneaky sense of humor and a way of very quietly saying silly things that my son cracks up over and repeats. It made for a pretty goofy five weeks of work.

We have some plans for work experiences lined up for my son this school year, and I'm worried whether the bossiness, self-talk, disrespect, and goofiness that marred his summer work experience will make those inadvisable. I hope that being friendless in those workplaces may keep him focused; and I hope that he won't always have to be among non-buddies to work well. Maybe that's something that will come with more maturity. For now, we'll keep friendship just for fun.

Are You Praying/ Searching/ Meditating The “Right” Way?

Do you ever feel like if you worked harder, prayed harder or meditated your way to egolessness your life would be better? There are so many instructions/preachers/life coaches (what is a “life” coach anyway?), consultants, self-help books and Yogi’s – all with ideas and instructions on how you can do whatever “it” is better/faster/deeper/smarter/cheaper.

I know that there are better and worse ways of doing things.  I’ve certainly experimented with plenty of effective and ineffective strategies. I’ve done enough dumb things to recognize that there are smarter (and less embarrassing) ways to cope.  But I get the sense that so much of what we hear and read is simply marketing that plays into our insecurities.  I think that, at the heart of many of these strategies is the unspoken, very seductive, message that, if we try harder or smarter or softer or “let it be”, we can gain control over our messy lives. Just follow these simple instructions and you can be….. (fill in your own wishes).

Maybe we just want to get our own way. We repeatedly try to bend the universe to our will and often the universe does not comply (darn!). The universe reminds us time and again that we are not in control very often and, in fact, we are sort of puny in the scheme of things. We see it all the time in nature. There is no control over whether it rains or shines. So why is it such a struggle to accept how little control we have over our own lives? I really don’t know.

What do you think?

Friday, August 12, 2011

Turning a Corner

My doctor asked me yesterday how old my son is and I replied, “He’ll be 6 next week” to which he responded “Oh, is that a fun age?” Actually, fun isn’t the first word that comes to mind when I think of my son, and for that I truly feel some guilt. But this post isn’t about hard feelings since this is his first birthday that I’ve actively looked forward to. I’ve always waited to the last minute to think about or plan his birthdays. I know that probably makes me seem like a lazy and uninvolved mom, or maybe your child is similar to mine and you can understand the reasoning behind it. 

When you have a child that doesn’t play with toys, has only one friend who lives far away, and doesn’t seem to understand the concept of a birthday, you sort of lose your steam when it comes time think about a party. But this year, I think we’ve turned a corner. This year, I think he finally understands what it all might mean, and this year, he is starting to engage in good old-fashioned play.

Instead of feeling a bit demoralized during the Toys R Us shopping trip, I floated out of that place thinking about the look on his face when he sees his new doctor kit. I thought about how much fun we’d have with the toy school bus and the fact that the timing with school starting couldn’t really be better.

This year, on his 6th birthday, his mama is going to see and feel her boy shine as he puts all the pieces of the puzzle together and takes part in what is such a childhood rite of passage in our culture. Just 5 more days.

It doesn’t get much better than that. 

Digital Days

I'm sitting in a Starbucks enjoying an iced tea lemonade while I type this post.  This is a nice bit of alone time for me to decompress from my week but I have to really confess that the main reason I am here enjoying this alone time is for access to the internet.  

This week we moved.  Packed up everything we own (really, who knew we had so much stuff!) and landed in a new place.  We're still in the settling in phase and waiting for everything to start working again.  I was without a hot shower for the two days we moved - even in the August heat a striking cold shower is hard to take - and am thankful that the hot water is now flowing freely.  Some mail is starting to arrive in our names, but they are mostly bills so I'm not as thankful for them as the hot water.  But, really, the thing I miss the most and the reason I'm at a Starbucks tonight instead of walking around the new neighborhood or unpacking the numerous boxes creating a fun maze in my house is that I really miss my access to the internet.

We live in a digital age and I know that many of us are dependent on computers, but I think parents of a child with special needs might be more dependent on access to the internet and all the information it offers.  When I talked to my husband about how I'm looking forward to getting our internet turned on tomorrow he said me two things.  One:  I can't believe that you are going through withdraw after we just had a two week vacation in Ireland where you had virtually no internet access.  Two:  I saw the library and you could go there and use the computer.  My response to this was to laugh.

Yes, it is true that I barely missed surfing the net while on vacation, but that was because we were on a true vacation.  Days filled with family visits and endless fun followed with late nights and falling into bed exhausted.  This vacation I really took a break from what I consider my work - researching therapies, equipment, nutrition, fun places to visit that have easy access for wheelchairs, etc.  We needed the time away to just have fun as a family and we had an amazing adventure-filled two weeks.  But then we came home and had to pack up our house and move to another state within the week.  And it is the move that made me long for my easy internet access so I could research the schools, therapists, health care.  We had done a lot of this research before the move but this week it felt real because we actually moved and I would have loved to turn on the computer after my girls were in bed and do a bit of research.  

Which leads me to the library access.  I think it's great that we have access at the library and have used it frequently for quick searches, but taking two children with me to the library that doesn't involve story time or crafts and requires them to let me surf the net for a period of time exceeding 3 minutes for my research is not appealing.  And, while I have not looked up the operating hours for our new local library I have a feeling that they do not keep special needs Momma hours - which pretty much has a start time for research around 10pm and continuing until later than I care to admit.  

Tomorrow our internet access at home is getting turned on.  I think that maybe it might make me happier than hot water.   Maybe.  One thing I know for sure:  having access to the online special needs parents and community is priceless.  I am truly happy that we are lucky to live in these digital days.

Thursday, August 11, 2011

Self-Care in Vacation form

After 5 years, my family and I just did our first vacation in Maine.  Packing for a family holiday is always a little bit of an adventure, especially with little ones. Which toys can we negotiate to leave home?  What stuffed animals will be missed? How many times must we listen to They Might Be Giants ABC disc as we drive for 6 hours?   But it feels like a real logistical challenge when trying to figure out room for all of Sylvie’s equipment—her new stroller/wheelchair, her Tumbleform® chair, her medicine and diapers and special feeding paraphernalia all take up too much room in our family station wagon. (We haven’t dared ventured into the world of family vans yet, though should the girl keep growing and move into a full fledged wheelchair, we may have to visit that consumer quandary sooner rather than later!)  And while I wasn’t as distraught as I have been in previous packing escapades, I still can’t help but wish we didn’t have to pack up all of Sylvie’s stuff. I just wish Sylvie could walk and talk and eat like other five year olds—I just wish my daughter didn’t have Krabbes disease.  I understand why some parents of kids with special needs don’t leave a 3-mile radius of their homes—it’s just too much hassle and too scary to get out of a routine.  I imagine it could be easier to stay sequestered from the stares and questions of strangers when they notice that our daughter drinks from a bottle and eats food we have ground into mush.  I suppose if I really thought about it, I’d be nervous if there was a pressing medical emergency while we are away from home, especially given that we stayed on an island off the coast of Maine’s mainland. 

But my partner and I keep on taking the more complicated road—in part because we want Sylvie’s twin sister to have adventures, even if her sister can’t always fully participate.  We also want to keep living a life that is worth living.  We’re not having a “typical” twin experience, but I’ll be damned if that means we’re not going on vacations, visiting with friends, taking hikes and boat rides and enjoying what little pleasures we can afford.  This determination was really brought home when we recently met with the pediatric palliative care director at our local hospital, and he was praising us for having arrived fresh from hiking. He has observed too many parents with kids who have serious medical conditions that don’t take care of themselves or their relationships.  I’m not saying it’s been a cake walk to find the balance of caring for our children while practicing self-care.  But going away on holiday, far from many of our daily reminders of how complicated our life is, really is a necessity for our sanity. 

Maine has been a particularly special place for my partner and me to take refuge.  The last time we were here, we had yet to discover Sylvie’s illness since she and her sister were only 6 months old.  Our Maine vacation before that, I was pregnant with the girls, not yet knowing I was carrying twins.  I slept a lot on that holiday, smelling the salt air and enjoying relief from the brutal hot summer of western Massachusetts.  We had rented a house for two weeks on the ocean, and invited anyone who could make it to come join us for some or all of the time.  We were blissfully eager to become parents, and we celebrated with our friends for the future.  I remember one particular hike I took by myself, rubbing my swollen belly as I walked, repeating over and over again to my budding offspring:  “You are wanted little one. You are safe. Welcome into this world.”  It became a mantra for me as I trekked around the conifers and sweet ferns, but I believed it then and I believe it now.  With or without Krabbe, my little ones are wanted and safe and they have been welcomed with open arms to enjoy this life fully. And that includes taking much needed vacations!

When Kirsten isn’t smelling sweet ferns, hiking in Maine or blissing out at the beach, she works as a professor of Communication Studies at the State University of New York and is the mother of 5 ½ -year old twin girls.

Wednesday, August 10, 2011

Cautionary Tales

It’s my one year anniversary of writing for Hopeful Parents, and I wanted to write a light lovely piece for you today. I was going to tell you all about the wonderful community of Special Needs parents that came together at the BlogHer11 conference for a Special Needs Mini-Con.

Organized by Julia Roberts, a Hopeful Parents writer whose Support for Special Needs site is a marvelous resource for us, it was a wonderful afternoon of community and connection.

But instead, my head and heart are going to darker places. Because I have been hearing too many cautionary tales these days. And they're getting to me.

I have been reading blogs of parents of somewhat older kids, and they are telling tales of meltdowns gone into overdrive. I have been hearing of situations where there is true danger, where there is serious bolting, and there are knife drawers opened.

These are children who were sweet as pie until adolescent hormones began to surge through their bodies and brains and the regular, everyday haywire took on a decidedly darker tinge.  Because for some kids, when you add testosterone into the ASD brew? It goes really, really wrong.

I know of parents who have had to institutionalize their child because of the threat he posed to other children in their house. Because they could not stand making their beloved 8 year-old daughter lock herself into her room in fear every night one moment longer, even though it meant sending their beloved 11 year-old son to live apart from them, with strangers.

Jacob, at nine is 83 pounds and stands right now at 4 foot 8. He is still sweet, still the delightful autistic boy I have known and loved his whole life. But what will a few more years and a few testosterone surges have wrought? 

Will I, too, be writing posts like my friend Blue Sky, entitled I want my son back with sentences that read: "That little boy who ran up to me arms outstretched, 'huggies Mam.' Demanding, smiling. Now I get kicked."?

It's a tale I'm hearing over and over, and it's got me spooked, worried, gnawing at the future. Like all special needs parents, I harbor a deep wish that crystal balls were real and that I'd be offered a glimpse into one.

I want, no, I NEED to know that Jake will be OK, that the police won't be becoming a regular feature in our lives. Because some of THOSE stories, the ones I read about in the papers where police officers mistake the intentions or misread the movements of autistic young adults or oversize teenagers? Have bone chilling endings; are the stories that make me wake at 3 AM in sweaty panic.

Because Jacob, while making wonderful progress, with his language bursting forth in leaps and bounds, is also growing larger by the minute, and still remains quite strange.

And while it's a strangeness that is so clearly spectrummy to those of us with ASD-dar... to the general public? To the emergency responders, police officers, national guardsmen who protect our airports and have not received training in recognizing people with developmental differences? It can look like something scary. And when people who carry guns feel scared and threatened, well, bad things can and do happen.

I won’t say more, can’t think any more about this tonight. Tomorrow I will look into finding and joining (or starting) a movement to make sure that all first responders get the training they need to recognize and appropriately interact with people on the autism spectrum.

And I suggest you do the same. Because the life saved may just be your (formerly) sweet son’s.

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

Monday, August 8, 2011

If I could turn back time....

I would. 

I have not been a very good Mom lately. I am tired, summer is dragging and my children, the ones I love to pieces, the ones that we adopted 3 years ago (from foster care) are still frequently trying their best to make me send them back. 

I came dangerously close tonight, as one boy whispered to another, life would be better if we lived with birth mom, I lost it. I said things I regret, I spoke the cold hard reality of her mistakes in a way that I regret with every fiber of being. Then I spent hours picking up the pieces. 

I am lucky P is an understanding man, he understood, he held me while I held back the tears, then he spoke to the children. He helped pick up the pieces without covering up the truths I had revealed in anger. Truths they deserve to know just not in the way that I told them. 

Then I got the birthday calendar down off the wall and brought it to the couch where there were two crying boys. I talked to them about what the calendar was for and then I got a pen. As I wrote I read aloud, Aug 8, the night Mom lost it and decided to change.

After I yelled at my kids about how their life would not be better with their birth parents who neglected them, I admitted to them that I screwed up, that I made a  huge mistake and that I would do my best to never get that angry at them again. 

Parenting is really hard for a lot people, we long for families and then when it happens it is not what we expected, it is harder, it is different, it is what it is.

When we adopted the boys I never knew that parenting kids with attachment issues ( among their alphabet soup of issues)  would be something that I would still be contending with 3 years into being a family. I never knew that I would still struggle with the constant testing, the crazy lying, stealing, pushing of buttons and comments about living elsewhere. Yes some of it is appropriate and kid stuff but some of it is not. I looked after and taught a lot of kids before I adopted mine and looking back I can see the ones who did not have solid attachment to caregivers/parents as young children, I see the differences, I see the behaviours my children exhibit. 

If I knew then what I know now.... I would not change a thing except perhaps my temper, I would ratchet that way back. 


J blogs at Stellar Parenting where most days she is a tad more hopeful than she is feeling tonight

Sunday, August 7, 2011

Sunday on an August Night

It's a quiet Sunday night.  Doug is in the studio making music, me in front of the computer on the day my Hopeful Parent contribution is due, and Jacob is in his room building Bionacle figures.  He really enjoys doing this by himself in his room, and he spends a lot of time building figures and watching TV.  

I've never really paid much attention to his hobby, until tonight.

This is the first time I've sat down and watched him build his creations, and he really surprised me at how good he is.  His pallet of Bionacle pieces is a combination of I don't know how many kits that have been purchased by me or gifted to Jacob over the years.  He knows the exact piece he wants, then he finds it in the large plastic bin that stores his vast collection of Bionacle pieces in all colors, shapes, and sizes, and he builds these pretty cool Transformer-looking figures.  They can even stand-up on thier own. 

I know Jacob could develop this skill into something markable on the job market, and the Robotics Club at Culver High could be a great place to do it.  I know that if he gave it a try and stayed with it, he'd like it and do well.  But all of the last school year, no matter how hard I tried, I couldn't convince Jacob to spend a couple hours on a Monday afternoon checking out a meeting.  Nothing worked - not logic, positive reinforcements, bribes, enticements, or promises, nothing could motivate Jacob to attend just one Robotics Club meeting to see if it was something he would enjoy.

This has to be one of the most frustrating aspects to being Jacob's Mom, seeing him not try things that I know he'd like and succeed.  He has so much potential, and, with the right support and his own internal motivation, I know he'll be able to accomplish anything.  But when I come up across his lack of desire to try anything new, it's always so frustrating.    

I understand why he's making the choice in regards to not checking out the Robotic Club, but this is an instance where I really notice his disability.  He's doing really well in so many areas.  His first year at Culver High went well, and his Manager at his part-time job at Petco really likes him.  We don't have as many conflicts, and when we do, he almost always comes to me later to say he was sorry for being so difficult or getting angry.  I see so much growth from where he was just a couple of years ago.  I'm really proud of him, and I expect him to continue to grow and mature.

But in this one area, it's still a challenge.  I still see how rigid his is.  I see how he still needs to learn more about having healthy relationships.  For him to reach his fullest potential, he needs to be at the College Intership Program so he can be immersed in social thinking.  He'll need support in executive functioning and academics.   He'll need to be living with a roommate surrounded by peers he respects and wants to have relationships.  And, last but not least, he needs to be educated on healthy eating, good nutrician and exposure to regular exercise.  The last one I've really let slide.  At least now I'm with a program that can help fix in Jacob what I couldn't correct myself.  Lucky me!

Jacob has come so far.

As he sits in his room on a calm Sunday night, I appreciate all that is good in Jacob's life.  At the same time, I imagine the good that might be.

Besides being Jacob's Mom, Susan is Program Director of the College Internship Program Long Beach which just opened on August 1.  She is on a temporary hiatus from blogging at Taking the Awe out of Autism but will resume when CIP is up and running smoothly in another few months.