Thursday, December 29, 2011

PANDAS keeping me up at night

Our nine year old son's tics have been out of control lately. His ribs hurt at night from the tic that makes his whole body clench. He's got a vocal tic, and also one where his arm moves in a circle. Lately, he's been talking as if his jaw is wired shut. It's another tic. 

Our specialist assumes it's PANDAS. His tics become severe about a week after he's been sick. Long-term antibiotics, the treatment of choice, (and one we held off on for years) have not helped.  We are considering a drug for the tics. Maybe to snap his system out of the continuous loop which starts once his antibodies overreact to infection and begin attacking his brain. 

Our son has an immune deficiency which has qualified him for IVIG. He got his first infusion this month and will receive five more over the next five months.   

Like I did with his sister in her early years of ASD, I wake in the night worried. I get on the computer and research while my family sleeps. What exactly is happening to my child's brain? I worry about the long term picture. I worry about it getting worse. I worry about permanent implications. No one can really tell me anything about that. 

Watching him tic every waking minute is overwhelming. Sometimes I can't even think. I can't breathe. And I know so many parents have it so much worse. He can talk. He's pretty happy. He's got no cognitive issues, other than some fears and phobias which don't affect our lives too terribly much. His is a mild case as far as PANDAS is concerned. 

But here's the thing. I'll die if anything bad happens to this boy. He is goodness personified. He is as sweet as they come. I can't take some stupid infection coming in and changing him in any way. I'm sick of it. I'm angry. 

So today I will draw on the strength of so many other parents here, those who face much more than we do. And I will keep researching. And we will go to the ends of the earth for this boy. 

And I will work hard to move up the emotional scale and stop feeling so helpless, because I'm not good for him, or for anyone from this place.  If I have to pass through angry on the way to hopeful, so be it. 

As the saying goes, the only way out is through. 

Wednesday, December 28, 2011

Neuropsych Testing and Mental Retardation

Last week, I traveled to Children's Hospital alone.

The results of Nicholas's Neuropsych testing were complete. Dr. Boyer requested to speak with me alone so she could review her findings with me in private.

I head off to the hospital, minus my faithful companion, Nicholas. The car ride is unusually quiet. There is no singing coming from the backseat as I fight my way through Boston traffic.  I take a deep breath and remind myself that the results of this testing are not important, but still I am anxious.

I park in the hospital garage. The silence now almost deafening as I miss Nicholas's laughter when he sees the coveted garage. There is no little voice to announce,

"Mummy, we made it! We're in the garage!"

I walk alone through the hospital until finally I reach Dr Boyer's office.

As I check in at the front desk, I am confused. Do I give the attendant my name or Nicholas's? I decide to give her both. The young woman smiles, but I am still anxious and wonder, inappropriately of course, if she knows something that I do not. I am dreading this meeting.

I sit in the waiting room and see the tiny, "Dora the Explorer" table and chair set where Nicholas loves to play. I feel alone and vulnerable. I miss Nicholas's calm, happy spirit, his loving and healing energy. I miss his angelic face. I hold back my tears.

"Mrs. Peters?" I hear, as Dr Boyer approaches me to shake my hand.

This is it. I think to myself and take a deep doesn't matter, it doesn't matter....I repeat inside my head trying to gather my strength to face the awful words I know I am going to hear.

Dr Boyer seems nervous. On her face, her most professional demeanor and suddenly I realize that she too is struggling to find her inner strength.

She sits at her desk and places Nick's file in front of her. She follows her professional script and begins our meeting by describing Nicholas's strengths. But my thoughts are distracted, I hear only single words,

", talk,, talk, talk......hard working....."   I am struggling to be patient, waiting to hear what I came 30 miles to acknowledge.

And then finally it comes....

"We performed many verbal and abstract tests and they display results that are similar to your parental questionnaire responses."

In other words, she knows that I already know what she is going to say.

"Your son is significantly delayed. I am diagnosing him with mental retardation."

Mental retardation.

It is a terrible word.

Immediately, disturbing images flood my mind, thoughts of straight jackets, barred windows and dark institutions. Inside my mind, I hear the screams of deranged individuals sentenced to a life of imprisonment. A not so distant reality for many diagnosed with this condition.

It is as if a demon has suddenly materialized inside my brain. He is laughing and sneering. He is running through the halls of my mind, smashing the happy pictures that hang there. And on the floor of my brain, he stomps on the shards of glass and shattered photos of Nicholas smiling and singing. He laughs as he creates a hellish bonfire burning the tiny torn pieces of my dreams for my son. He extinguishes the last fragile shreds of my hope.

Mental retardation.

It is a word no parent is ever ready to hear.

Parents of children with special needs are prohibited from living in denial.

Any positive outlook you may possess for your child's bright future, is quickly tempered by stark intellectual reality. You are surrounded by professionals who remind you often of your child's handicaps, his issues, his disability. Teachers, therapists, physicians, and psychologists are strategically placed throughout your life to remind you that your child has been diagnosed with a mental illness. They are armed with test results and progress reports. They are persistent and eager to share their unwelcome findings with you. You may disagree with their methods or test results, but it is irrelevant, all that matters is that you listen to their emotionless explanations.

As a parent of a child with special needs you cannot run and hide, you cannot bury your head in the sand, you must listen patiently as yet another professional tries to pigeon hole your child. You must face the cold reality of your child's diagnosis....again and again and again.

These professionals will remind you that academics is no longer the focus of learning for your child. They tell you life skills training is the only hope your child has for a happy future. Any chance of intellectual greatness is gone. Recognition or acclaim in society is only a passing shadow, a parent's delusional dream. Your child is somehow less. He is less smart, less able......less of a human being.

Dr Boyer is speaking, but I do not hear her. Instead, I am distracted by a new vision in my brain, a vision of Nicholas. In my mind's eye he is holding his teddy bear tight to his chest. He is swaying back and forth, comforted by the love he feels for his beloved toy. This vision of Nicholas renews my lost courage and hope. I am awakened. I can finally hear Dr Boyer.

I thank her for her time. I tell her that I am not in denial and understand what steps I must take to ensure my son has a viable future. I tell her that despite this testing, I will insist that we continue to teach my son all that he can learn and that this diagnosis does not give us a license to become complacent about our approach. I tell her that I understand my need to know who will care for my son when I am gone. It is a silent fear that haunts me every day.

I tell her that I appreciate her report but believe it is important to remember that I have hope for my son and his future. That to me, intelligence has never guaranteed happiness. Instead it is a loving heart that brings contentment. It is the ability to think about and truly love others that fulfills a person's soul and makes the world a better place for everyone. Perhaps in time we will find a test to measure this important quality for.... "to love" is truly "to live".

I left Dr Boyer's office feeling somewhat numb and although I felt sad, something kept me calm, something stopped me from crying.

It was time to pick up Nicholas from school. I drove to his school and waited in my usual spot on the benches inside. A few minutes later, Nicholas came around the hallway corner, as he saw me he ran into my arms.

"Mummy," he says, "I had a great day!"

I hug him tight, thankful that I am once again in his calming presence.

"Are you proud of me?" he asks.

I hold him tighter.

"Yes, Nicholas, Mummy will always be proud of you."

And finally, in my son's loving presence, I can no longer hold back my tears.


To read more about our family experiences, please come visit us at: To learn more about Prader Willi Syndrome, please visit To learn more about epilepsy, please visit Thank you to all of our readers, wishing you all a very healthy and happy New Year.


Tuesday, December 27, 2011

The Other Shoe

I’m hesitant to write this, lest I jinx it, but my low-toned, slow-processing, highly-anxious, and easily-fatigued 11 year old with Prader-Willi syndrome has lately become quite feisty.  More flexible. Slightly mischievous.  And funny!

He’s speaking in silly voices with a goofy grin on his face. He’s (very) occasionally interjecting with appropriately witty comments. He’s initiating pile-ons during reading time. Last week he calmly and expertly articulated his case for not having to again be the one to sit squeezed between his siblings in the cramped backseat for a two-hour car trip.  And, on Christmas Eve, he was even spotted galloping around the coffee table with his cousins shrieking “Presents! Presents! Presents!”.

Eleven years ago now, at our very first Prader-Willi support group meeting I remember cradling Oscar’s limp body in my arms while talking to the father of a ten-year old boy with PWS. His son, the oldest of the kids at the meeting, floored me with his social skills and verbal abilities. He was slim, happy, articulate, and, in that short window, exhibited none of the challenges I’d spent the two months since Oscar’s birth and diagnosis weeping over in the scary PWS literature.  I cringe now at how I peppered the father with questions about his son’s interest in food, his performance in school, his behavioral profile.  I don’t remember many of the details of our conversation now except the dad leaning in conspiratorially, whispering “it’s going so well, I just wonder sometimes when the other shoe is going to drop.”

Lately I’ve found myself wondering the same thing. Of course we have our share of struggles – behavioral outbursts, stubborn moments, anxiety over food, etc, etc – but none of it is nearly as bad as I feared when Oscar was born.  Right now Oscar seems to only be increasing in his adaptability, participation, resilience, and, surprisingly, his ability to understand and use humor.

I’m watching in amazement as this more engaged and mature Oscar emerges, while also wondering if I am appreciating his growth only because I know we are on the verge of puberty, that infamously difficult time for all kids, but especially for kids with PWS.  Am I over-celebrating his achievements now because at any moment “the other shoe might drop”?  Possibly.  Or maybe I am finally just appreciating what is, rather than fearing what might be.


Mary Hill lives in Berkeley, CA and is the mother of three children, ages 13, 11, and 7. She is ever hopeful that she'll start blogging again soon over at Finding Joy in Simple Things.

Therefore I Share

Mental Illness is nothing to be ashamed of.

It is not the fault of the person dealing with it.

It is hard for all involved. The individual, family, friends .  . .

Mental illness is nothing to be ashamed of

How many times have I said that in real life, on Facebook, on my blog?

I tell my son this all the time. I tell him that his Bi-Polar and OCD and other illness/disorders are a pesky part of him but they do not define him and they do not make him less of a person. I tell him that he is my hero - having so much on his plate yet getting up each day with a smile on his face. And when it is a bad day (or week) I tell him that's ok too. He's entitled. Eventually he will get up again after we help him fight off the demons that haunt him in his head.

Mental illness is nothing to be ashamed of.

Just like people are not ashamed of cancer. People are a lot of things at Cancer - scared, mad, frustrated, devastated, determined to name a few. But people are not ashamed of cancer.

I suffer from depression and anxiety.  It's been mostly under control for many years now but you can read a little about previous times I was struggling here and here and also here.

A few weeks ago it got really bad really fast. It seemed to hit me out of no where. My brave and amazing husband and friends made sure that I got to the hospital. I stayed for 3 weeks. While I was there I was almost successful in hanging myself with a sheet. Yes it was that bad. I was not myself. I was over run with irrational thoughts and overwhelming emotions. I thought the world would be better without me. I thought that my pain, that feeling of deep emptiness, would finally be gone if I was dead. I felt so very very desperate.

I was and still am battling a mental illness. I probably always will in some way.

I share this because I need to not be ashamed. I cannot teach my son and society to accept mental illness if I am ashamed and keep this as a secret. Therefore I share.

Monday, December 26, 2011

Right now

Another Christmas has come and gone. It was the second holiday for my youngest daughter, Eliza.


She's catching up in size to her older sister, Violet who's now three. They are at ages that they'd be playing together with their Christmas toys if Eliza didn't have her brain injury.


Violet does play with Eliza, but mostly with her toys. She will sing her ABCs and other memorized songs. Eliza vocalizes her pleasure in the sounds of her older sister's voice.


Once in a while Eliza will reach out for Violet's hand, which is not always welcomed by Violet.  These little scenarios usually play out on a daily basis at our house.

We used to have to encourage them but sometimes they happen spontaneously – that's how I imagine they are supposed to happen. I imagine a lot.


I wonder if Violet is receiving the necessary input and feedback from Eliza, at least enough to keep her interested in their relationship. But then I remember that most three-year-old children are pretty focused on their little world, right here, right now, but they also imagine a lot, too.


I still imagine their future and how their relationship will grow. I wonder if it will grow apart as Eliza doesn't physically change in the ways Violet will. I've done nothing to hide Eliza's abilities (or lack there of) from Violet.


I've been honest even when part of me wants to totally protect her from the future. I've also never hidden any of Gwen's inabilities, either. Gwen is their oldest sister who was born with a brain injury, unlike Eliza whose brain was injured after birth.


I constantly have to ask myself what I can I do to nurture Violet, to protect her, to foster her emotions when she realizes she is a child wedged between two sisters with cerebral palsy.


I'm raising my first child who is three, who is neuro-typical, and I couldn't be more scared about my abilities as parent than I am right now.


But I guess that's the key, isn't? The grail of all grails that will get me through this is: right now.


While holidays will come and go and my children will do what they will (or won't), all I can really do is be present. Just like Violet lives right now, I must do the same. It's really about all I've got.


What do you have? I'd love to hear your advice on siblings and raising 'high needs' children like mine!


Tim Gort is a writer, public speaker and advocate who shares his personal challenges and triumphs of being a father of three, two with cerebral palsy, at the family’s bog. 



Thursday, December 22, 2011

What's in your stocking?

The holidays can be such a contradiction in terms for so many of us.  It can be “the most wonderful time of the year” as the song boastfully claims or it can be downright miserable and leave you feeling crabbier than the Grinch.  It can be jolly like the fat man who gets all the credit or it can make you surly as I tend to think Mrs. Claus feels this time of year since her husband gets all the credit for the presents.  You know damn well she gets NO acknowledgment whatsoever for her part in all the festivities.  Even the elves get recognition.  You can long for family and then have an overwhelming desire to run screaming in terror 15 minutes after you or they have arrived because of some ignorant comment.  Yes, the magic of the holiday season.  Hope may float but it isn’t the only thing, if you know what I mean.

All of that is WITHOUT being the parent of a child with special needs of any kind.  We’re “blessed” with more of everything—more meds, more planning, more sickness, more stress, more meltdowns, more family friction, more dietary issues, more hyperactivity, more oversensitivity, more notes or calls from school, more routines disrupted—more, more, more.  Makes you feel like Santa left coal in your stocking for no good reason sometimes.   Our situations don’t translate well to a holiday card that makes you want to grab a cup of eggnog and belt out a Christmas carol. 

But one thing that parents like us do get better than most is to cherish the little things that get us to go from day-to-day.  Like when our child manages to sit on Santa’s lap without screaming in terror like he’s being abused and causing a major scene.  My youngest managed that this year.  I captured the “magical moment” on video—all 10 seconds of it.  (Literally—10 seconds.  But hey, it’s still 10 seconds which is like a marathon for B.)  Or the little bursts of holiday spirit, like when my oldest decided, completely unexpectedly this morning, to wear a Santa hat to school—MIDDLE SCHOOL.  I asked him why—and other kids were doing it so he wanted to as well.  We went through the whole scene like some social role play at the kitchen table because I was anticipated mocking and bullying from others—you know the “gift” that keeps giving.  Actually, I think he was trying to get a girl to notice.  (Dear Lord, grant me strength.)  But he left with a smile and almost merry.  Or when B’s music teacher stopped me to relate how she was tickled that B rang the bells during “Jingle Bells” in her class with a big smile on his face and actively engaged.  Not exactly moments for a Norman Rockwell painting but precious to me just the same.

So despite all the presents to be wrapped, the cookies to be finished, the schedules to adhere to, the messy house to ignore, and the stress yet to come…I will try to remain positive these last couple of days.   I hope that you holidays—whatever your family celebrates—are peaceful and happy however that translates in your house.  May your child be engaged by at least one present, may you have a ready witty quip for that family member who always gets under your skin, and may you find one moment to treasure for yourself.  Merry Christmas.  Oh, and Santa—I’d prefer chocolates in my stocking this year.  (Hint, hint there P.)

Wednesday, December 21, 2011

A Cosmic Mistake

It is a delusion to believe that you must be well to treat a person who is sick or suffering.
--Dr. James Orbinski

When my son Carter (whose diagnoses are of the emotional/cognitive/behavioral/social sort) was two years old and had been screaming and wakeful every day for approximately 98.6% of that two years, I embarked on a most ridiculous quest: I wanted to know why I, fallible, broken, screwed-up-in-the-head, and lacking a seemingly essential has-her-shit-together quality, had become Carter’s mother.

It seemed to me that there had been a cosmic mistake. Shouldn’t broken babies go to better-than-average mothers? That’s the story, after all. We say that God never gives us more than we can handle, and to him who much is given, much is expected, and a thousand other tidy quips.

I figured somebody, somewhere, had screwed up big. Carter, destined for a mother endowed with limitless energy and patience, a woman who put three made-from-scratch meals on the table every day, a family in possession of abundant resources of all kinds, made a wrong turn. Like Bugs Bunny said, “We should have made a left turn at Albuquerque!”

Instead, he stopped here, at my house, in my family. My son.


Ours, of course, but my husband isn’t writing this.

Mothering Carter has been easily the most transformative experience of my life, and not in a rainbows and kittens, oh isn’t it wonderful, gosh he’s just shown us what really matters in life kind of way.

I often wonder why people expect that. Who would ask a soldier, recently returned from the horrors of war, if the experience had enriched her or his life? No one.

Those are the twin expectations, though. The expectation that I am somehow special, and the expectation that I feel ultimately blessed by my child with special needs (you know, that I am thrilled to have landed in Holland even though that wasn’t where I expected to go).

As much of a contrarian as I tend to be, I really do care (much as I dislike this about myself) what other people think of me, so it’s a bizarre and difficult thing to learn to live in opposition to those expectations. For years, I lived in deep shame that I was not up to the task of parenting Carter as I thought he should be parented. The shame remains because it’s a wound that heals slowly, but I am Carter’s mom. He has just one, and I’m just me. The less time I spend trying to tease out the whys and wherefores, the better off I am.

Cosmic mistake or no, he’s my kid and I’m his mom. I’m who he needs, broken and screwed up, creative and overly-wordy, sloppy and silly, impatient at times but oh-so-tolerant of differences, just me.

Objectively, I am not enough. There is no one here with the mother tape measure, though. No one has come to fix the cosmic mistake that was made when Carter was born to me and not to some other, more objectively appropriate, mother.
I'll keep him. 

If nothing else, I love him.
Adrienne Jones lives in Albuquerque, NM with her husband and their children. She writes the blog No Points for Style.


Tuesday, December 20, 2011

'Tis The Season

So the holidays are finally here, and it's been one heck of a festive season for us so far. 

In the past month Connor has had four doctor's appointments, three hospital trips, two illnesses and a partridge in a pear tree.  He's mostly recovered from the strep throat, RSV (which he generously shared with Jeremy and me) and g-tube infection but has now developed a truly glorious case of conjunctivitis, making both eyes resemble candy canes in honor of the occasion.  Also he's now running a fever, cause unknown.  Again.

One of our cats has decided the ribbon on our Christmas presents under the tree is edible.  The other one prefers the flavor of packaging tape.  There's a four-foot wide section of our Christmas lights burned out smack dab in the middle of our roof line.  At the rate I'm going, I'm hoping to get all my Christmas packages sent off before February of next year. 

And Christmas cards?  Forget it.  Mailing Christmas cards is one of those gloriously unattainable things that normal people do because their kids aren't collecting diseases like Pokemon cards. 

But you know what?  Dang it, I'm determined that we're going to have a great Christmas anyway.  We'll light a fire, pop our Christmas crackers, open our slightly-chewed on presents and just enjoy spending time together.  It probably won't be the kind of picture-perfect Christmas that Bing Crosby sings about, but you know what?  That's okay. 

That's not really what the holiday is all about anyway.



You can find Jess daily at her blog, Connor's Song.


Monday, December 19, 2011

Christmas Magic

Christmas is strange for me.  I never feel more homesick than at this time of year, nor do I feel more guilty.  I have an overwhelming desire to give my kids the same kind of Christmas that I experienced as a child, and I just can't.

I'm not just talking about the winter wonderland that was a feature of the season in northern England, such a far cry from the heat of a South African Christmas, but the experience of being around family and friends.  Of having those ordinary moments that appear so extraordinary through a child's eyes.  The magic of Christmas.

Life as a special needs child is tough.  When she role-plays, I'm at once elated that she is developing her pretend play skills, and dismayed that her doll is "going to therapy" day after day. Childhood should be about wonder and magic, not mundane, routine therapy.

So at this time of year, I find it even more important to put the wonder back into her life. 

My previous efforts have been far from successful.  At the age of 2, she figured out Santa Daddy within seconds.  Last year she was sick all Christmas Day, and this year she has already discovered Santa's stash of presents.

With no sensory Santa around these parts, I knew I'd have to work some real magic.  Yesterday we hosted a Christmas party at our house, and a member of our community here very graciously made a special appearance.

It was perfect.  Pudding was at ease in her own home with us around.  She was so excited (and only a tiny bit afraid) to meet Santa, who seemed to know lots about our little girl.  She was as comfortable as can be, content to sit in the chair next to him even after he'd delivered the goods.

It isn't going to be a Christmas just like the ones I used to know, but that doesn't mean it won't be every bit as special.

Maybe the marvel of Christmas isn't just for kids.  Maybe we parents crave the smile on their delighted faces every bit as much as they desire a Hello Kitty or Thomas The Train toy.  The good thing is that those are the presents that can be delivered throughout the year, though they never stop being magical.  You just have to believe.

Spectrummy Mummy and family wish you very Happy Holidays, wherever and however you happen to celebrate them.

Sunday, December 18, 2011


We have a son that sings all the time at home. The shower, before he falls asleep at night, first thing when he wakes up in the morning, in the car, while riding his bike, sing, sing, sing, the boy just loves to sing. So, when determining his schedule for freshman year in the brand new program he’s a part of for kids with learning differences, we were giving three choices of electives: art, drama, or choir. We didn’t even have to think about it, choir it was, after all, the boy just loved to sing!

In September I bought him a Christmas-y looking button-down shirt in anticipation of the Christmas choir concert I was sure would be coming. Grandparents and friends asked early if there would be a Christmas concert, and if so, would he be up there singing. “I’m sure there will be, and I’m sure he’ll be in it, I’ll let you know as soon as I have the details,” I said, reassuringly.

Funny thing about memory, it’s selective, faulty, and there are built-in devices to help block big, huge chunks of it. You never forget how to ride a bike, but the pain of childbirth? Poof. Same with Christmas concerts, apparently. Despite the fact my son had been not in one, not in two, not even in three, but NINE Christmas concerts and never opened his mouth one single time, I just fully believed he’d sing not only in choir, but for sure in the Christmas concert.

Started getting e-mails from the choir teacher in late September. “Any suggestions how I can get your son to sing?” They went from there. We tried bribes. We tried threats. We tried assigning special students to stand next to him to help him know when his part (bass) was supposed to sing. “When Lorenzo sings, you sing,” we reiterated. When that didn’t work we arranged a special 1:1 choir teaching assistant, and angel named Jeff that took the only free period he’d had in four long years in a rigorous college prep high school, and gave it up to get my son to sing.

Not a peep for weeks and weeks, and then finally an e-mail from the choir director, “Rojo sang today in choir! Not very much or for very long, but he sang.”

I’d never fully considered just how hard it would be for a boy that can read, but not quickly, to follow the written words of unfamiliar songs, let alone read music. I’d never fully considered how overwhelming it must be to keep track of his part, amidst three others, while standing (because of size and section), smack dab in the middle of 30 other kids. I’d never considered that this might not be only difficult, but totally impossible.

Got an e-mail from the choir director last week asking if I thought Rojo would hold a lighted candle for the two songs that were going to be sung in the darkened auditorium. “Sure!” I said, “no problem!” Then his special ed. teacher asked me if the choir director had contacted me – she’d heard there would be candles involved and had her heavy doubts he’d be good with that, since he seemed to adamantly avoid the oven when they cooked in class, going so far as to use his foot to (try to) open and close the oven.

I decided to ask Rojo. “Rojo? Will you hold a lighted candle during the Christmas concert?”

“NO WAY!” he said.

“Will you hold a candle that isn’t lighted?”“NO WAY!”

“What WILL you hold?”

“I will hold a carrot.”


I e-mailed the choir director to tell him that he was more than welcome to encourage the whole candle thing, but our best hope was probably that he be talked into holding an unlighted candle, and under no circumstances was he to be allowed to hold a carrot – my constitution is only so strong.

Sunday night was the concert. Rojo had ten people in his cheering section, three grandparents, two parents, a sister, an aunt, his Resource Room teacher from his grade school, her husband and sister. We watched as the choir entered the auditorium in their robes holding their candles. There was Rojo, the one darkened candle, but he was holding it and he managed to get himself into position on the risers. Maybe it would be harder to see if he was singing or not, if his candle wasn’t going, I hoped.

Songs one and two came and went, his mouth did not open once.

Choir took a break and the kids learning guitar had a turn. Choir came back out, minus the robes, minus the candles, plus gloves, scarves and the occasional Santa hat. He wore his on his head despite the fact I could tell from my far away seat, was bugging him to death. Still. His head tipped awkwardly in attempt to offset the Santa hat annoyance, I stared at his mouth for four more songs. The next to the last song I saw it. The grandparents saw it. The father, aunt, sister, past teacher and friends say it. For part of one song, he sang. He held his arms awkwardly (everyone else had theirs down at their sides), got up all his gumption, opened up his mouth and let out a few words.

The last song involved not only singing, but swaying left to right WHILE singing. My boy swayed. It was awkward and not in tempo, but he swayed. For the most part, when the choir went left, he went left. When the choir went right, he went right.

My boy sang and swayed, sang and swayed, sang and swayed.

Another Christmas miracle.

Saturday, December 17, 2011

A Little Bit Stronger

We're coming up on the two year anniversary of my son's autism diagnosis.

Not that I'm keeping track or anything.

December 22nd is our diagnosis day for my son Howie.  And even though I can't remember if I showered or brushed my teeth today, I do remember the two hour appointment when our whole world changed.

Not for the better, not for worse.  Just...changed.

I've been thinking about it a lot lately - it's hard not to - but mostly after a friend sent out a signal for help.  She was having concerns about her child.  Already a special needs mom, she was worried.  Not just about her child.  She was doubting her abilities as a parent to do this all again.

I wrote:

"You're more cut out than anyone. You know this road. When Lewis got his diagnosis, I thought it was the end of me as a parent. I thought there was no way I could parent two kids (Howie and Lewis) with special needs, and add in Gerry's "stuff" and I wanted to walk away and leave them with better parents. But I am the better parent because of them. Every day they show me amazing things and teach me things about myself that I would have never known. I reach the end of my rope almost daily with this crew. But every day that rope gets longer and I can handle more. You can do this. You will get help and answers and support and you can do this."

I wrote the words I wished someone had said to me two years ago after Howie's diagnosis.  Words that were said to me in August after Lewis' diagnosis.  Words that I will remember in January after my oldest has his developmental evaluation.

If we can be honest, there isn't a day that goes by that I question my abilities as a parent.  I yell more than I want to, lose my cool more than I want to, and worry more than I ever thought I could.

As our two year diagnosis day closes in, I have to remember that I am stronger than I ever thought I would be.  I have a voice that I never knew existed.  I have learned to pick my battles and fight like hell to help my kids in any and every way.

But I have also learned to open myself up to help and support from the incredible people on this journey with me.  And they remind me daily to let it out, let it go, and "let it be". 

December 22nd, 2011 will come and go.  As will December 22nd, 2012 and 2013 and 2014...

For my son, it's just another day in his life.

For me, I will take a deep breath and face that day, reminding myself that "You Can Do This". 

"I know my heart will never be the same
But I'm telling myself I'll be okay
Even on my weakest days
I get a little bit stronger
" - A Little Bit Stronger by Sara Evans


Alysia Butler is a stay-at-home mom to three boys.  Her two youngest both have an autism spectrum disorder diagnosis.  When she isn't trying to remember if she showered or brushed her teeth, she's writing about the boys at Try Defying Gravity, and tweeting about important stuff at @trydefyinggrav.

Factory Axis

The Vespa swayed and popped as I gripped the seat under me.  My hands were wet from rain and mud splashing back up.  I didn’t articulate the question in my mind, but it was there:  what the hell was I doing on a motorized scooter on Christmas Eve on country “roads” in Taiwan?  As my wet hands slipped one too many times, I realized I’d have to hold on to the driver.  I reached around Tom and gripped the edges of the pockets on his leather jacket.  The beds under my nails stung white hot from pinching tight in such damp cold.

I didn’t know much about Tom.  He was of Irish heritage and called Chicago home.  I’m not even certain how we met, beyond realizing that two Americans, and Midwestern Americans at that, in the northern part of the island known as the Republic of China, Taiwan, we were bound to meet eventually.  Nor could I conjure up much of a story as to why he invited me on this Christmas Eve junket, or why I accepted the invitation without thought.  I’m sure we were both just trying to make the best of it.  As two people thousands of miles from home on our own by choice, I think we were both inclined more towards yes than towards no by nature.

As we bounced through the rough roads and puddles of unidentified liquid, I planned how I would not like it when we got there.  It could not possibly be good. With each jerk of my neck, I staged my disgruntled judgment of our destination.  I said yes, but it still felt somewhat under duress.   It’s a church, after all, and I haven’t been very churchy since I exited my family-mandated 12 years of Catholic school years back.  And while I’d gotten to know the Taiwanese during my year and a half as a teacher there, the language and culture to some extent - this would be a Filipino church we were headed towards, per Tom’s invitation.  The entire mass would be in Tagalog.  I knew I would not understand a thing.  I anticipated thinking of my family, of the 7,383 miles I was away from the only kind of Christmas I knew. It was, at least, a Christian church and would be closest to the Christmas Eve masses I’d observed at home - a far stretch from the strange pageantry of Christmas celebrations happening among the Taiwanese, who for the most part do not concern themselves with acknowledging the origin of the holiday as the foundation of Christianity. 

In my mind, I was not home and so it could not really be Christmas.

We arrived at the modest chapel in the middle of bleak fields and marshes barely made out in the darkness.  Tom parked the Vespa next to a short row of others, not a single car to be found.  Because of this sparse array of transport, I anticipated a drearily scant congregation.  Tom noted the skepticism on my face and informed me they do not have cars and only the very wealthy have scooters.  Most would have walked from their “homes,” tonight, through those fields and marshes he pointed to.  I felt the word “homes” in quotations in the way he said it, but we talked little, so I did not question.

He pulled the door open to a din and a light that have not been matched for me in the 20 years since. The ornate pews were packed. The aqua colored paint on the walls cracked, but the alter and carved stations of the cross were pristine. No single body filling the pews was still for more than a moment.  The band at the front warmed up, but it seemed movement was choreographed to their haphazard sounds even still.  Everywhere smiles, handshakes, pats on the back, hands held, hugs prolonged – a joining of person to person, person to next person so graceful and constant.  The level of genuine affection lead me to guess it might be one large extended family.  Except that there was not a single child in the church.  The entire congregation was made up of adults ranging in age from 25 to about 55.

As Tom and I found our spot, the band opened the ceremony with nothing I’d ever heard in all the Christmas Eves I’ve celebrated.  It appeared to be a sort of folk/rock/bluegrass approach to the traditional Christmas carols I knew, but in a language I’d never heard.  The musicians were so earnest and so enveloped by their craft, that for brief moments, right at this opening song, I’d forgotten about my quest to disapprove of this experience.

The spoken rites of mass ensued and in its subdued progression, I was released to mourn what I missed.  I missed my family, my own church from childhood – if not from faith, then from a cultural adherence.  I missed my family and the thought of the sugary buffet of sweets that certain members of the family would be laying out as the rest of us were at mass.  I missed the firm tweed shoulder of my dad’s suit jacket against my cheek as I leaned, inhaling the incense from our pew as I dreamed of the chaotic cadence of a holiday at home with my mom, my dad and my 9 brothers and sisters.

Tom’s pinky showed up in my view as his hand waved hesitantly in my range of vision.  I was weeping and I did not know it.  Tom and I did not know each other well and perhaps we would be friends one day, but we weren’t yet. What was he to do with this sobbing girl that he’d brought into this community that he understood, but that she did not?  He waved to inform me that he was my host, my connection between where we were and me, and that I was audibly crying, and that that was not very cool. 

The band began again.  In an effort to rally, I leaned a little closer to Tom and whisper-asked about his family.  I came to find it was also large.  I thought about how much my sisters would enjoy the music, my big sisters who formed all of my tastes in music, literature, people… in everything.  If only they could be here. I know they would support a love for it.

At some point in this mass that was surprisingly predictable in its order, unpredictable in its spirit, I stopped thinking about the Christmases that were, and thought about the Christmas that is

As the observance ended and we milled out, Tom introduced me to a few that he knew.  We were of note from the start as the only non-Filipino participants, though it seemed to make little difference.  As Tom’s Mandarin was better than mine, the common language between us and our hosts, he made arrangements I knew nothing about.

We got back on the Vespa and continued on through the marshy dark, following others with scooters, leaving many to walk the same roads behind us. The only explanation I got from Tom, which I apparently accepted was “We are invited.”

Eventually we arrived at an industrial building.  We entered among the smaller group who rode with us through a back door.  We walked up two flights of stairs past unwieldy machinery that confirmed my suspicion that the building was a factory.  Up on the 3rd floor there was a subsection built off with walls and a ceiling, like a little loft in a huge open warehouse, a hive in a tree.  One of the young men, about as tall as I am, turned to me as he opened the door and said  in English,  “Home.”

Burners were warmed up, chairs were unfolded, gifts were procured, stories were told.  The walkers arrived and left their muddy shoes at the door. In a stilted, broken progression between what Tom already knew and the stories our hosts now told us, I came to understand certain things.

The group of 20 or more that lived/worked in this factory all had families at home in the Philippines.  Many were highly certified and educated, but could not make a decent living in their home country.  They left their families there and came to Taiwan to work and live in the factories to send money home.  Some were the fathers, some the mothers, but all had people that they loved and supported 700 miles away.  They lived on cots and electric burners here, fueled by 10 hour factory work days and envelopes home filled with more money than they could make if they lived with the beloveds they made this sacrafice for.  A few talked about how they came to the decision on who would leave to work here, mom or dad.

And yet they smiled and celebrated and welcomed us.  The honor of guests was palpable as guitars were unveiled, music played, gifts appeared, food offered.  I sat on the edge of a cot as a woman so proudly showed me the photos of her small children on the wall behind us, told me in her best English that she have enough go home 1 year and go back be pediatrician and mom.

The message came across strongly that they believed they had something in common with Tom and I as English teachers from America on a visa, away from our homes.  But the truth was that I got paid 3 times as much as they did for half as many hours and I did not have a family to support.  I lived in my own room in the nice house of a Taiwanese family. I was young and foolish and was there by choice, not obligation.  They knew this.  I knew this.

But they didn’t put it between us, they chose to connect based on the few things we did share.  I’ve never been given a gift as generous, as meaningful, as useful.

We stayed late.  We drank whisky.  I laughed out of contagion, for the gratefulness and celebration in that factory/makeshift home was not less than, not equal to, but greater than what I understood Christmas Eve to mean.

I don’t know what happened to Tom.  I know he was a friend for as long as I was there.  I still have some cassette tapes he made for me.  My kids will never meet him or my gracious hosts from Christmas Eve in 1991.  But a crucial part of who I am as a parent, who I am as a hopeful parent who was, at one time, certain she would not be game for this disability parenting ride, comes from that swampy factory Christmas Eve.

Peace and joy to you, no matter your circumstances.

Wednesday, December 14, 2011

The Story of Our Lives

"All the world's a stage,
And all the men and women merely players."
-William Shakespeare 

During the month of November, people around the world lose their minds and decide to write a 50,000 word novel as part of NaNoWriMo. I participated for the first time this year, and am proud to say I was a winner. "Winning" simply means I completed the 50,000 words.

The best thing about NaNoWriMo was that every day I knew what my priority was for that day: write at least 1,667 words. Of course, I still had my family to care for, but beyond that, everything else could wait. I felt no guilt leaving dishes in the sink or delaying the laundry another day, or even neglecting my blog, because I had a job that needed to get done.

It also felt wonderful to complete something. The novel isn't by any stretch of imagination a great work of literature. But it is a complete story, with characters and a plot and a beginning, middle and end. I had a goal, I worked to make it happen, and I finished it.

I had lofty ideas about what to do with all that time I would get back after November was over. Go to the gym! Write my blog every day! Prepare meals for the week! But now that December is here, I am back to the scattered reality that is part and parcel of being a parent to two children, one of whom has special needs. This month I have been: researching new ABA providers, finding a dog trainer, working through the functional behavior analysis (FBA) process to try to determine why my son is being aggressive at school, organizing Moe's growing paper trail (see previous item), sending out holiday cards, buying a new dishwasher, finding a new babysitter or two, and more.

Some of these tasks have been on my to-do list for quite a while, and many are ongoing tasks that won't ever truly be complete. My list has always looked a little like this, but at least I used to be able to stop and find some focus when I was writing my blog. For some reason, it is harder now.

My blog provides a great emotional outlet (as many of us say, it is cheaper than therapy) but it is not the distraction from reality that the novel was. My blog chronicles my life, including the many challenges involved with raising an autistic preschooler. It provides a place where I can explore my feelings, come up with a plan of action, and connect with others. But it can also be difficult to re-tell some of my more unhappy moments difficult situations.

When I was working on the novel, even though the characters and events were loosely based on personal experience, I was writing about somebody else. I was in somebody else's world, and I was in complete control of the events. I controlled whether the main character's special needs child spoke or didn't, how he interacted with other kids, and how quickly he progressed. I controlled how much my main character and her husband fought, or how easily they made decisions together about their son's care. I controlled what meltdowns happened and when, how friends and family reacted, and who stuck around to the end. My characters' behaviors may not have always been pretty, but they were under my complete control.

The lack of control really is the one of toughest things about being the parent of a child with autism. There is so much uncertainty about really big questions. Will my child even learn to use the toilet? Will he speak? Will he ever live an independent life? Will he be loved and taken care of after I'm gone?

As parents, we try to gain control. We write IEP goals and implement systems. We research therapies, diets and medications. But ultimately, so much has to do simply with time and development - and those darn kids who insist upon having wills of their own.

How much would we give to be able to simply write the story and make it so?

But we know life doesn't work that way. And so it is time to get back to reality and write once again about the events that make up my family's story, some mundane and some extraordinary, but always real. At least until next November.

Tuesday, December 13, 2011

Performance Anxiety

The first time my son sang in a school choir concert, he was in third grade. It was not a triumph of inclusion. It was an obvious set-up for failure. He could not stand still and sing. He fidgeted, he bobbed, he pushed the kids around him, he kept his mouth shut, he looked miserable. Out in the audience, I looked miserable, too. I worried about all the parents taking videos, that all they would see forever after was my guy falling apart and ruining things for everybody. My discomfort was so obvious that another mom offered me her sympathies later. I guess I gave a pretty awful performance too.

The second time my son sang in a school choir concert, he was a senior in high school. Just this year, as a matter of fact. His return to choral performance was spurred by a need to have a fine or performing art credit to graduate, and the fact that choir fit in his schedule. But there he was, last Thursday night, taking the stage again, nervous mama in the audience. I worried when I saw his spot on the stage was dead center, front row, most conspicuous position possible. He fidgeted some, but he wasn't the only one. He didn't push, and he bobbed just a bit. More wonderfully, though, he sang. His mouth moved throughout, right on cue with the music. I could hear his voice, but in a good way, as part of the mix. No parent videos harmed.

Afterward, I ran to the choir room to grab him, assuming that he had used up all his control during the backstage waiting time and the onstage singing time. But he wanted to do what every other choir kid wanted to do -- hang around, talk to his friends, congratulate his classmates. He high-fived or hugged a few kids I didn't know, and enjoyed chatting with a few I did. All in all, it was a resoundingly successful night, and one that highlighted how far he's come. Maybe for the spring concert, I'll be able to sit back and relax. Although I understand he's been trying out for solos.

Anger Advice

Anger is just another emotion - sure...  It is a very uncomfortable, sometimes unacceptable emotion, especially when the anger is directed at those we love or at us (either from others or self directed). But it is good to understand anger; in that way, we can develop coping strategies.

When we are angry, we not only have an emotional response, but there can also be a strong physical response. Anger was probably hard wired into us a long, long time ago and had its beginnings in a primitive, reactive animal instinct that developed to help us stay alive. It is known as the flight or fight response and was particularly useful when we lived in caves and were threatened by wild animals who wanted to eat us. Thinking of anger in this developmental context, it isn’t surprising that we developed a ‘fight or flight’ response.

You will recognize the components of fight or flight. Anger shoots signals to all parts of our body to help us prepare to either fight the enemy or flee from the danger. Either way, it energizes us and prepares us for action. Our blood pressure rises, we feel a rush of adrenaline, and our respiratory rate increases. Blood is directed into our muscles and limbs which might require extra energy for running or fighting. Our pupils dilate, and our awareness intensifies. Our impulses quicken (the opposite of your post yoga feeling). We are now on the lookout for the enemy and ready to fight.

These days, we more often feel threatened by other human beings than large animals, but it still feels like they want to “eat us”, more psychologically than physically. At those times, we are operating in the part of the brain that is not rational.  We may not be able to process decisions clearly and may make choices based on a temporary situation or a strong but fleeting emotion. An angry person often makes mistakes because anger causes a loss in self-awareness and objectivity. We also forget that we might feel differently in a couple of hours or days and come up with better solutions to our present predicament.

What to remember when you are angry

1. No emotion will last forever; not even anger although you might think so at the moment.

2. Think about Victor Frankl’s advice, “Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” Frankl believed that human dignity resided in the power that, no matter what the circumstances, we have choices that we can make.

3. Try not to be afraid of your anger but don’t get too fond of it either. Anger is a powerful emotion that you can harness and use productively or allow to run wild. You can make use anger; it can lengthen or shorten our lives. Anger is like electricity which can run large machines or zzzzzzzz !

Sunday, December 11, 2011

Imperfectly Beautiful Art

It's that time of year again where homemade crafts from children are in abundance.  In my house our Christmas decoration boxes include the crafts made in years past and each year we add more.  This year the girls are just shy of age 6 and a solid age 4.   My {almost} 6 year old is a veteran crafter - she crafts often and with the speed of the RoadRunner, making it challenging to keep enough supplies and ideas in the house to satisfy her.  I love seeing her artwork evolve over time and this year her crafts are getting more refined and meaningful and she often has a story to share about each of her crafts - what each color means, why she chose certain shapes, etc.  It's wonderful seeing the more thoughtful side of her crafting develop and I find each one is a little treasure, freely given away to others and made with so much love.  

Crafting with my 4 year old is a much different experience.  She has challenges with all her motor skills so crafting is more work than fun for her.  With fine motor skills that are primitive at best, she is usually more content at watching others craft instead of participating.  But lately she is getting more interested!  She is focusing and trying hard to work on the craft projects.  I've seen this at home and they've reported seeing it at school, too.  With this interest she is getting better at helping with the crafts.  I no longer open her school folder and find projects that were clearly made by someone other than Emma.  Instead I am finding works of art with smears and scribbles and misplaced stickers.  It's wonderful!  I love the preschool art in all its imperfect beauty!  

I look forward to adding more art treasures to our keepsake collection as the holiday season continues.  I know that they will bring smiles to my face for years to come as I recall these precious younger years when there is incredible beauty in the art made by little hands.  

Being an Advocate amidst Joe Six-Packs and Final Exams

Reader, forgive me ahead of time for using this Hopeful Parents space just to collect my thoughts from this last week.  I’m just catching my breath after a week in and out of the Pediatric Intensive Care Unit with our daughter.  Sylvie’s papa and my beloved partner bore the brunt of the hospital stress-taking our child into the ER at 3am with a high fever and shallow breathing. He was the one who got to sleep on the hospital cot amidst the hum and bustle of ICU staff duties.  He is the one who played advocate most of the stay, asking the nebulizer to be reduced so our daughter would stop shaking; he’s the one who does the math and questions the doctors and wants to know what her vitals really mean in terms of her health.  Sylvie stabilized pretty quickly, but I got to be at home with her sister, trying to explain to my very smart five year old why her sister was so sick and why she wasn’t coming home as quickly as we hoped.  Sylvie’s sister gauged her mood by colors:  “Mama, today I feel ‘gray’ that Sylvie is not at school with me;”  “Mama, today I feel a dark blue because papa and Sylvie aren’t home;”  “Today I feel dark, dark black because Sylvie is still in the hospital.”  I want my daughter to be able to vocalize her fears and feelings about her sister who is sick. I asked the teachers at school to keep an eye on Uma while her sister was in the hospital.  To express oneself without hesitation I believe is a key skill as advocates. We are rapidly becoming a family of fierce advocates. 

I can count on my left hand the number of times we have had negative experiences with medical personnel.  Unfortunately, one of those interactions occurred this last week in the PICU, as I sat holding my vulnerable and shaking child.  A doc came in, draped himself over Sylvie’s IV drip, expressing his concern about Sylvie’s swallowing and eating.  It’s a legit concern, and one we’ve discussed many times with our OTs, our primary doctor, our visiting nurse. Essentially—we’re thinking about it. But this doc, who the nurses later assured me was a nice guy, just waltzed in and starts being confrontational.  I told him so. I told him I didn’t like how he was talking with me.  Essentially, I don’t know this guy from Joe six-pack, and I told him that.  It was so instinctive to just tell this guy to back down and change his tone and then we can talk. He backed away, sat down in a corner chair, and then we did talk how best to get food into my baby’s belly.   I like that this advocacy mode is my default setting—it’s quite useful sometimes.  I like Sylvie’s papa’s advocacy mode even more—it used to annoy me, but now it’s extremely essential. Having a local quantoid in the house is very useful when dealing with the medical world.

We’re back home, Sylvie’s tried her new Make-A-Wish tub, and our refrigerator is filled with food from good friends.  I got a massage from my dear neighbor and friend last night, in lieu of another meal on wheels.  The girls’ school sent to the hospital get well cards, and Sylvie’s para-educator made some home visits once Sylvie was back home from the PICU.  We live less than 2 miles from a hospital that is able to provide quality health care for me and my family.  In the midst of my child’s latest hiccup, I can see that our move back to Vermont was a good thing on multiple levels.  Now, if I could just ask Sylvie to time her health crises a bit better so that they don’t fall the same time as my college’s final exam schedule, I think we’ll enter into this holiday season just fine!       


When Kirsten isn’t writing final exams and grading undergraduate papers as a professor of Communication Studies at the State University of New York, she tries to bake holiday cookies and hone up on her advocacy skills for her 5-year old (soon to be 6) twin girls.

Saturday, December 10, 2011

Building Community One Tweet at a Time

If you’re on Twitter, and maybe even if you’re not (say, if you read Stimey's wonderful article) you may have heard of a hashtag topic marker that has been making the rounds for the past few weeks, even spending some time trending (on days when celebrity gossip yields few juicy items I presume).

It is this one: #YouMightBeAnAutismParentIf…  and it has been garnering some amazing responses.

It started as a private joke between two autism-mom bloggers who are also twitter friends: Jenny ( ) and Elise (), a take off on Jeff Foxworthy's "You might be a redneck if..." humor.

And then, as brilliant ideas often do, it spread like wildfire. People in the autism community noticed, chimed in (what Twitter was made for) because if there’s one thing we autism parents need on a daily basis, it’s a good laugh.

And while some of the tweets were funny in a side splitting way, others were funny with a wince; some were heart touching, yet others a call for help and support.

Here is a small sampling below:

@Stimey: #youmightbeanautismparentif you consider your kid's epic spinning session in a fast food restaurant to be an exercise in autism awareness.

@diaryofamom: #YouMightBeAnAutismParentIf you've discovered that 'family' need not be defined by blood.

: #YouMightBeAnAutismParentIf you are filling out forms and your 7 year old points out the mistakes you're making. And she's right!

: #YouMightBeAnAutismParentIf you carry fidgets, gum & pec cards instead of lipstick and nail files in your purse.

:  #YouMightBeAnAutismParentIf trying to get any information out of your child is practically your full time job.

@myautisticson: #youmightbeanautismparentif you have learned to love your child for who they are, rather than who they should be. Best lesson ever!

I caught wind of all this about a week after it had started, when I saw a #youmightbeanautismparentif tweet from a friend and thought YES! And looked in to see what this hashtag was all about.

I added this to the conversation:
@squashedmom: #youmightbeanautismparentif you think that neurotypicality is HIGHLY overrated.

What I found was a community gathering itself again, in a marvelous way. Some people were even joining Twitter just to be a part of the conversation. Jess from a diary of a mom tweeted:

  #YouMightBeAnAutismParentIf you barely glance at Twitter outside this hash tag cause a) you're out of time and b) all the cool kids are here. 

It made me think about how important community and support are when you’re a special needs parent. I am well aware that we are the lucky ones, we who became parents in this age of awareness and internet connectivity; how even if you live in an isolated rural area, you can now easily find others who really “get it,” who can answer questions, laugh and cry with you.

I think about how hard it was to be a special needs parent in the age when we were told our kids were hopeless, to just shut them away and forget about them, or even worse, that it was OUR fault they were that way.

I can only imagine how hard it must have been when it was considered a shameful secret to have children that weren’t "perfect," and to support and believe in your special needs child was a radical act; and you were unlikely to know anyone at all in the same boat.

I am grateful to those brave pioneers who have come before me, and so thankful to be in the midst of the many amazing, supportive communities I have found both in my city and in the world via the internet.

So every day I check out what’s new in the twitter stream gathered at #YouMightBeAnAutismParentIf, grateful that every day brings me new friends who have found yet another place to share the joys and pains of special needs parenthood.

Come join the conversation on Twitter. You can find me at @Squashedmom. Usually adding my two cents daily, even if it’s just...

@squashedmom: #YouMightBeAnAutismParentIf you are just too damn tired to think of anything witty tonight, but still need to connect to this community.


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.

Tuesday, December 6, 2011

How to cope with the things people say

The other day, I bump into a friend after many years.

 She is such a wonderful girl and we used to so enjoy hanging out but had slowly gone out of touch. We chit chat and catch up.

 She touches upon some uncertain events that she has been dealing with. And how she has decided to go with the flow since things were so out of her control.

 I laugh and tell her being an Autism Mama has turned me into a go-with-the-flow kind of person

 I see her face change with the shock of what I said.

 And I realise just how breezily I discuss R's Autism these days

 It wasnt always like this.

 I was very very sensitive - like a wound.

 Every contact- no matter how well intentioned- hurt

 When we first discovered autism -  I wrote and email to my close friends telling them what we  had just found out and asking for them to ignore me and pretend for my sake that they did not know what I had just told them.

These good friends did just that

 But the words of other people ( well meaning though they were ) hurt so deeply

 "Did you see that Larry king show" ( where the mother was taking about killing herself and her child ?)

"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know )

 "I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

 "Soon they will be able to screen for autism in utero " ( ooooh lovely)

 And the worst

 You must really regret vaccinating your child ( I dont have a sarcastic quip for this one as this cuts so deep)

 But the truth is that people are just looking for something to say.

 To emppathize.

Offer some hope!

Maybe a solution.

Becasue a lot of people want to believe there is a perfect solution 

 All my life I have been deeply in love with words.

 So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and needed to go to sleep this instant or else horrific consequences would ensue !


But being loved  by R - my child of few words  - has taught me to look beyond words

And so I listen patiently to this good hearted friend of mine who says things that would have wounded me so  deeply 2 years ago

And I know she is trying to help not hurt  

"I know there is the good autism and the bad autism .. does he have the good one ? she is going on "They cant attach - autistic kids cant"

 She finally stops and says " Is he really bad ?"

 "No", I smile back "he is the best"

The 'hard' days...

It gets quite hard sometimes…

It’s kind of become a subtitle for us special needs parents. We say it with a generally cheery disposition, and many moments when we are grateful or inspired, but really for many of us… it does get quite hard.

Not as hard as it is for our kids, for sure, but hard nonetheless.

I, for one, get mighty sick of driving around trying to find a dog park where the dogs aren’t barking. Billy’s hyperacusis seems to have intensified in 2011 (the year of the smorgasbord of gastrointestinal drugs). It’s got to the point that he is wearing ear protection most of the time, in and out of the house.

Also… There’s a new home being built next to ours. It’s been going on all this year. I’m not sure how many of you are familiar with a building schedule. Before this year, I believed I know what I was talking about because I’d watched a LOT of renovation TV. What they don’t tell you on those shows, is that there’s a guy whose job it is to arrive in his truck at 6.30am and sit idling and listening to dance music until 7am (the legal start time). Then he gets out of his truck and randomly throws bits of chain and brick at metal objects for 20 miuntes or so. Then he goes home. That’s pretty much it until lunchtime when guys turn up to smoke cigarettes at your fence line.

I’d have to say, homeschooling a kid with autism, whose major challenge is an extreme sensitivity to sound, has been interesting while living in a construction zone.

Also… We ended up in the Australian Human Rights Commission this year fighting to salvage Billy’s rights and our reputations. It sucked poop, but we succeeded. The preparation for that event, one whole year in the making was like writing a PhD in something I didn’t ever want to know about but knew was important. Like international potato chip recipes. It cost us close to $20000, and almost all of my mental health.

Since the conclusion of the action, I have noticed how much calmer things are around the house (construction noise notwithstanding). I have had to eat crow (nasty) and admit I had no idea how much of a heinous troll I had become.

Also, I’ve had to acknowledge how long my sentences had become.

What else was hard…? let me see…

It was hard learning to home school, but now it’s the coolest thing ever.

It was hard trying to get to the bottom of Billy’s GI issues, but we’re still trying and after a while examining poo and bile just becomes normal.

It was hard sitting on a plane for 14 hours, but completely awesome when we had the holiday of a lifetime in the USA.

All pathetic first world, whiny white girl kind of hard, really.

We are fine.

We have money (not as much as the doctors and lawyers were given this year, but we have some). We have food (I photographed all the pancakes I ate in the USA, before I ate them, and they were good. Added bonus: now Billy eats pancakes too!). We have a house (with a giant McMansion next to it now).

We are fine.

We were inspired by our travels, and hope to do more. We are hopeful about Billy’s learning journey (he’s writing, he’s reading, he’s still adding 2 and 2 and getting 1 but we’ll get there). We’ve got a billion ideas and projects, and most of all we have each other (miraculously, given my year of grumpy panic).

So really, aside from the barky dogs and the dude in the truck at 7am, we are… fine.

I write these things to remind myself of what is good.

Because this week, my local autism community lost one of our own. An autism parent, a legend, a man who was a true autism warrior. He was a dynamic presence in person and online. He disseminated information. He traded in vision. He fought and fought and fought for his children, for other people’s children, for children in general.

This week, it got too hard.

I don’t know the details. I don’t know why he died. I just know that two children lost their Dad, a woman lost her husband, a family lost their son, brother, uncle… it is devastatingly sad.

I do know that it gets ‘hard’ for us. I hate that it gets hard. But his week, I learned that it’s important to keep that ‘hard’ in perspective.

Hard is being a kid who is driven to tears by the sound of a barking dog. Hard is a person who tries to learn alongside his peers and can’t. Hard is being a dedicated father and community leader accepting he just can’t do it anymore.

I’m not just going to hug my kid harder from now on. I’m going to check in on my friends, my colleagues and my fellow travellers. I’m going to offer to share the load, and ask for help when I need it.

I may also quit my whining a bit. The guy chucking bits of chain around isn’t going to know what hit him.


Valerie’s increasingly random (and more positive) ravings can be found at Jump On The Rollercoaster.


Monday, December 5, 2011

How not to worry about looking different?

Us parents of children with special needs can worry a lot  about what others think of their childrens' unusual mannerisms and behaviors .

Over time, we develop our coping mechanisms-

We build defences  to cope with what we think people are thinking.

Here is how I learned to stop worrying.

Two  years ago we were at a friends house for Thanksgiving

 One of the guests was a teacher who is a retired Special Needs teacher.

She had worked a lot with Autistic children over the years

 We were having a great time at the party and we had brought along our  Macbook 

 R was on the Playhouse Disney Site looking at an " Ooh and Aaah" game

 I and the hostess were standing around the kitchen island .

 The retired teacher looked at what R was  doing and said" he is liking the screen because of all the shaking and the moving images.. Autistic children love things that move"

 I looked at her - taken aback

 She had just relegated what R is doing to a state of mindlessness

 ( and he is ever mindful )

 I looked at what R was doing and replied

 "not at all .. he is playing a game - if you click on the instruments you can make the monkey characters play that instrument .. and you can keep adding different instruments till it turns into an orchestra .. he loves music.. you see "

 She looks again at what R is doing and then nods her head- seeing him in a new light 

 It was  an important developmental leap for me to  trust our own eyes the most

 A friend of mine - Deb - gave me some great advice a little while ago

 I was expressing anxiety about going to India

 This was 2009- 2 years ago -  and the  first time we were going to see our family  after Autism.

 I was worried about  having to explain Autism to everybody

 But this friend said that the important thing is to look at your child through your own eyes and not as others see him

 I have been chewing over this profound thought

 And that Thanksgiving I got to put it into practice.

This shift in perspective simply dissipated my anxiety 

 This perspective is very different than learning how to cope with people's reactions to our kiddos not looking like other kiddos

 I knew that always

 Followed the principle of - if R was not bothering anyone or hurting himself - he was fine to do what he wanted 

 Even if that thing was to coo at all  aisle numbers, sit down in the birthday aisle, gasping with wonder at all the birthday cards around him that said  you are 1 .. you are 4 and so on and so  forth

 This perspective is about not letting just anybody else's impression of your child influence your opinion of your child

Its about using your own eyes to look at your child and look at your life 

 Its about being selective about the perspectives and the advice we special needs parents get

It is NOT about  about steeling oneself ... learning not to mind .. training oneself to not always be in the mode of correcting your child ( for things that are not even wrong )

 This is about not minding at all

I am Floortime Lite Mama  and I blog about my  life and my amazing autistic son here . This is one of my old favorite posts as the perspective I talked about here has had a big impact on my life.

Thursday, December 1, 2011

How to Take Care of Yourself While Caring for Another

Did you know?

Each year by presidential proclamation there is National Family Caregivers Month?  It’s November, due to Thanksgiving.  I also get a governor’s proclamation each year in NJ as do other states.  In part it reads:

“Whereas, the primary source of community-based services and the cornerstone of our long-term care system are care recipients’ family members, friends and neighbors who help their loved ones maintain their independence and their quality of life; and…according to the National Alliance for Caregiving, there are roughly 67 million family or informal caregivers in the United States...”.  This means you’re not alone!

Not a caregiver you say?  I had my “lightbulb moment” when I thought “How many other parents are still diapering their five year olds or feeding them baby food? “   How many of us may even be lifetime caregivers?  More people enter institutional care due to caregiver burnout rather than deterioration of their condition.  I know it’s our “job” to take care of our kids, but you’re doing MORE than other parents and are also caregivers (just like wife caring for an ill husband or someone caring for an elderly person).

How to avoid caregiver “burnout”

  • Take care of your own health by not skipping your own doctor’s appointments; this includes the dentist and eye doctor too!
  • Get support.  Besides support groups, there are “matching” groups for families of children with the same condition. 
  • Find out as much as you can about your child’s condition so you know what you’re dealing with and can partner with medical and educational professionals in making decisions.
  • Take a break to relieve stress whether it’s respite, exercise, etc.  No time?  I put a chair in the corner with books, candles, aromatherapy, fiber optic decorative lights etc. and started with 5 minutes a day which believe it or not helped.

Remember that you still need your own “time out” to recharge.  I know it’s hard not to feel guilty but when you feel like you can’t take a break at all and there’s too much to do, THAT’s when you need it the most.  You’ll be better able to care for your child if you’re not “running on empty” and take care of yourself.


Remain hopeful,


 P.S.  Sorry this one’s late but my daughter was in the hospital-again!



National Family Caregivers Month


Support Groups


Matching with a trained support parent


Online caregiver community


Mental health help


Resource Guide (conditions, special needs organizations, etc.-new each January)



Everyone Falls . . .


I always tell my kids, “Everyone falls”, to which they respond, “We get up”. It comes from a figure skating movie called ‘RISE’, about the demise of the 1961 U.S. figure skating team in a plane crash, and the subsequent rebuilding of American figure skating.

As my son learns to walk, it has been especially important to remind the kids that we all have stumbling blocks in life and can be guaranteed to fall. But we get up. I always say it is to my and my son’s benefit that he is a triplet because we don’t have time to fixate on his mobility issues. We just have to keep plugging away. He has the peer examples of my other two that are motivating, and he is a very determined little guy. If you aren’t bleeding or broken, get up. Doesn’t sound so compassionate, but rest assured I kiss every boo-boo and provide a gazillion hugs, band aids and ice packs for any and all situations. But the recovery time is fast because it is framed as momentary, not ongoing.

Some recent personal struggles have added stress, which is never fun. But on Thanksgiving, my son showed me what it takes. He got up. It was the first time he did that by himself. He was holding onto my husband, but he did all the work himself, struggling, wanting to give up, falling a little, but eventually doing it. I watched him with happiness welling up in me for him, realizing I need to live what I preach. It’s ok if I struggle and fall, as long as I eventually get up. My children need to see this.