Friday, December 31, 2010

New Year's Wish for You

There have been several pimples that have taken residence on the side of my cheek, apparently the low-rent district of my face. So I decided to get myself a facial this morning.

Included with the facial, was a brief hand and arm massage -- which is when the esthetician found it.

"Someone bit you?" she asked, while gently rubbing lotion on my scabby, bruised forearms.

"My son," I said. "He bit me." And then the whole scene played in my head: the boiling water I was scared he was going to throw at me, how I very firmly placed him against the kitchen counter away from the water, how he was so upset that I had restrained him that he began tangling his hands in my hair while pulling my head and scratching my arm and hand.

"Here," she said, "I have some Neosporin." And she gently rubbed the healing salve on my wounds.

A tear formed underneath the cucumber-water soaked cotton balls covering my eyes.

And I felt grateful for her tender care, and thought I should never need to give myself permission to do something nice for myself like a facial. Pimples aren't the reason I need to come in; to honor me for me is the only reason I need.

Wishing all you the ability to honor yourselves in the ways that you need in the coming year. Happy New Year!

- - - - -

I'm formerly cms8741, and you can find me at my new blog

Happy New Year from Hopeful Parents

Wishing you and your families a bright year filled with







Thursday, December 30, 2010

Do Without Doing, The Power of Nothing

Do you feel it?  The stress and overwhelm of life especially around the holidays?  Does your head feel heavy with scary, overwhelming thoughts?  In 2010 I noticed a common message coming through.  The theme?  Let go.

It’s easy to head down the familiar path that spirals into chaos.  What helps me recognize the cycle and shorten the time spent in the spiral is evidence that there is another way.

At your deepest core lies peace and awareness that you have love and abundance all around you

Don’t believe me?  Take a moment to sit.  Look around.  What do you see, feel, smell, hear?  What evidence do you see to show that it’s there supporting you? What is beneath your feet supporting your weight?  Do you have an abundance of air to breath?  When you were hungry today, did you find food to nourish you?

“Do without doing.”  This says to me stop working so hard and rest when your body says rest.  Take a moment to breath and take in everything around you.  Life is happening for you, not to you.

It happens when you find yourself in a deep, dark place when everything is collapsing and you may finally turn to nothing.  What you find there….everything you need.

If you’ve grown accustomed to feeling exhausted by the end of the day with nothing left to give I encourage you to consider trying these two steps for one day and see how you feel.

  • Choose one thing to remove from your list of “to-dos” that feels awful when you think about doing it.  Try making the choice not to do it.  You can put it back on the list tomorrow…if you want to.
  • Give yourself 5 minutes to do nothing, absolutely nothing.  Find a quiet space and breathe, deep breaths into your belly.  If you’re used to running from one thing to the next without ever taking a break you may find yourself fidgeting after 2 minutes.  Hang with it. 

I use these two simple steps all the time now.  Sometimes I go big and chose to let go of anything from my list that doesn’t feel good.

Christmas day happened this way.  As a family, we took a long walk in the rain, stomped in puddles, and watched birds fly overhead.  I made soup and salad for dinner, nothing stressful or time consuming which left more time for connecting.  We spent the evening sharing stories, playing games and being present, engulfed in love.  I let go of expectations and discovered great peace and love all around.

My goal for 2011 is to find a way to let go of something every day to make room for the present moment to be with the ones I love.

What would you consider letting go of today?

The Happiness Factor

Eve of the Eve

Wednesday, December 29, 2010

christmas dirge

blank page and

a heart full of pain

hopeful eludes me today

too many sleepless nights leave me edgy


hair-trigger temper and little patience

combined with long winter break

a recipe for meltdowns of epic proportions

mine, mostly

his, occasionally


no time to plan

can't leave his side

nighttime hours exist

only in the pockets between wakings

soothing pains and fears in darkness

daytime stretches endlessly

when I am all to him

for good or ill


family gatherings hold no joy

thinly veiled tolerance

of my boy who speaks

with an electronic box

and limited understanding

one says he's distracting

disturbing, too

so glad to see you

once a year


laughter from other rooms

wraps itself around me

as I sit with him

cradling his pain and confusion

sheltering him from the assault

of too many transitions

strange foods, smells and sounds


traditions long cherished

disappear in wisps

vanishing like the fog

of one's cold breath

too cold, too wet

too noisy

no understanding

too busy and unstructured

to be enjoyed


perhaps we'll try again

next year



Niksmom isn't always so gloomy or dispirited when she writes at Maternal Instincts.  She chalks it up to the stress of the holidays and her son's entirely-too-lengthy winter break— along with the snow which has kept them from their planned activities. 

She wishes all our readers and authors a very Happy New Year.  May we all find peace in its myriad forms.

365 Days a Year, We Floss

Every day, since my daughter has had teeth, I have brushed them. As a little one, fine motor delays made it necessary for me to do it for her. I'd give her a crack at it, then go over them myself. After her first dental appointment in which I had to peel her from the ceiling, we knew it was vital for us to keep at it, going over her teeth every day, keeping them very clean. God forbid she'd ever need a cavity filled; not with her kind of anxiety. We still go over them twice day after she's brushed and we floss her teeth once every evening. 


At the dentist last week, Riley sat in the chair, being brave. This is her third time in this particular office, and before her first appt. I pre-paved, informing the dentist about Riley's anxiety and sensory issues. This time, Riley blurted out "WAIT!" a few times. She said, "OH NO!" once or twice. But she really did well.


At one point, the dentist pulled out a line of floss and asked "Are you flossing every day?" I answered, "Yes. I floss her teeth every day." Riley nodded. 

The dentist began flossing, and Riley said, "Ow!" 
Smugly, the dentist said, "The fact that she's saying ow tells me you aren't flossing everyday."
"She says ow every day," I said, arms folded, glaring at the dentist. 
It seems trivial, but her casual remark really pissed me off. Ten years old, and the child has never had a cavity. Because of my effort.
How hard would it have been to look at her teeth and say something nice? 
To all the special needs parents who willingly, lovingly give so much of any parent who feels unrecognized for your efforts, big and small, I honor you.

Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect ParentAge of AutismThe Bark! and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional journal for occupational therapists.

Tuesday, December 28, 2010

Unprotected Moments

Another poem from my wife, Jennie.



Unprotected Moments

By Jennie Chapman Linthorst


My son has reached the age of seven,

the stage where memories get stored

into the warehouse of childhood.


When he is older,

he will open the heavy, sliding aluminum doors,

to access the boxes,

the moments of firsts.


The first time Mrs. Guelff praised his first grade homework,

The campfire skits, midnight snacks, and sleeping bag snuggles

while camping with Dad.


I wonder what the disappointing memories will be,

or the first recollections of fear.


I awoke yesterday to the sound of his screaming.

My independent boy had gotten up quietly

and was opening a birthday toy in the basement to play.

I found him shrieking with terror,

his tall lanky body shaking with tears.

A large spider had crawled from the new box,

piercing the silence, terrorizing his solitude.


Where is that stored in the Psyche?-

these moments I can’t protect him from-

spiders, unkind words, judgments, misconceptions,

and the scenes of an inconsistent world.


Jennie Linthorst, BA, CAPF, a Certified Applied Poetry Facilitator, is the founder of LifeSPEAKS Poetry Therapy.  Jennie has facilitated expressive poetry therapy workshops at UC Irvine Extension, the University of Santa Monica, and in retirement homes and women’s centers.  In addition to her workshops, Jennie works privately with individuals and parents, exploring their personal histories through reading and writing poetry.  Jennie wrote about her own journey of motherhood in her book of poems, A Mother’s Journey.

More Workshop info at

Contact Jennie Linthorst: 310-546-7771;

Therapy Cat

My son, Nicholas is eight-years-old. He was diagnosed at birth with Prader Willi Syndrome.

Since that time, we have had him evaluated by the finest doctors in Boston. He has received extensive therapy programs. He's had g-tubes, back braces and foot orthotics. And while all of these interventions have been very helpful; I can tell you without a doubt, that the biggest inspiration to my son, Nicholas has been the family cat, Bandit.

This poor, fluffy fellow is almost solely responsible for my son's daily exercise program of walking, talking and most importantly, laughing. Yes, life has certainly changed for Bandit since Nicholas joined our household. His once leisurely lifestyle has been suddenly transformed into a rigid regime of hard-core therapy for Nicholas. He is chased. He is massaged. He is harassed and cajoled. He has even sourly withstood a haphazard baby carriage ride around and around the kitchen, blanket and all.

But I think Bandit's bravest contribution by far was when my son began to learn to walk.

Nicholas did not have the strength and coordination to walk unassisted. His mind was eager to explore but his weakened body could not manage the task. He had taken a few good spills and was reluctant to try again. It was Christmas time when our physical therapist brought us a walker and suggested he try it. I cried and cried at the sight of this metal monstrosity. It was ugly and institutional-looking, something you'd find in a nursing home not a playroom.

But my tears of sadness were quickly replaced with tears of joy when I saw what happened next. My son's face sparkled as he eyed this shining chariot. He was not sad or embarrassed at what others may think. He didn't feel sorry for himself. He knew this silvery new vehicle could mean only one thing...freedom. He grabbed the black plastic handles of the mini aluminum walker and like Ben Hurr maneuvering his trusty chariot, he headed immediately for the cat. To Nicholas, this was not a walker, it was the coolest cat-chasing machine known to man.

Well our poor cat nearly jumped out of his fur when he saw the silver streak thundering toward him. SCRAAAAATCH, went the sound of the metal wheels rumbling across our kitchen floor. And like Tarzan from the jungle, "ahhhhhh ehhhhhh ahhhhhh ehhhhh ahhhhhh" came the sound from Nicholas's mouth.

We all got very accustomed to the sound of those metal wheels sraping across the floor. We'd instinctively move out of the way as Nicholas roared confidently past. The only one who still hasn't fully recovered, is of course, Bandit who had to endure the sight of that shiny metal contraption barreling down upon him day after day.

It has been six years since Nichols learned to walk and since that time, our once docile cat continues to sit steadfastly alert, waiting for his next therapy session.

And like a GPS tracking device, be it day or night, my son Nicholas can tell you exactly where you can find Bandit.  

                          Happy New Year to All!

For more stories about Nicholas, Bandit and the gang, or to lean more about Prader Willi Syndrome, come visit us at:      

Monday, December 27, 2010

Stray Dogs

One rainy night fifteen years ago we heard a whimpering at the front door of our tiny bungalow.  We peered out the window to see a large scraggy dog with matted brown fur huddled in the shelter of the creaky porch.  We gave him some water and scraps but his whimpers turned to howls anyway.  Within an hour the emaciated dog was not only inside our house but sleeping between us in the double bed my husband’s grandmother had given us when we moved to California earlier that year.

I was thinking about this story recently as I prepared for our Christmas trip to the east coast.  As the trip neared I became increasingly worried that someone in our family would get sick.  My hands are raw and cracked from excessive washing.  I open doors in public spaces with my sleeve covering the knob.  When I’m not freaking out about contracting a stomach virus, I fret about pesticides on our food, chemicals in our sunscreens, and radiation from our cell phones and laptops.  I’m concerned that my choices or my ignorance will cause me (or one of the kids) to develop cancer.  Most of the time I appear to function just fine, but I definitely don’t remember the carefree person that let a dirty stray dog sleep in her bed on that rainy night.

David Whyte, in his Poetry of Self Compassion lobbies for maintaining a youthful innocence as we age.  Through his own and other’s poems he encourages us to continue to take chances, to see the world with fresh eyes and to incorporate wisdom without letting it stifle our courage or exploration.

I know I lost a large portion of whatever youthful innocence I had when I was thrown into the world of disability and illness with Oscar’s birth. I am now far more attuned to medical struggles and that knowledge fuels my feelings of vulnerability and fear. I worry about things over which I have no control.  I don’t take risks. I berate myself for mistakes or my inability to accomplish all that needs doing. I see too easily the ways in which plans can be foiled and really struggle sometimes with imagining positive outcomes. 

This time of year I always think about changes I’ll make in the New Year.  I’ve had my years where “exercise more” is my top priority along with a vague notion to “take more time for myself”.  This year, though, I want to be mindful of times when I am letting experience (such as three prior bouts of stomach virus during winter trips to the east coast) squash any remaining inner youthful innocence.  I want to approach life less rigidly, and worry less about the consequences of every decision.  Life is going to keep throwing curve balls and I could spend my middle years futilely trying to dodge every one or I could focus on possibility and see where it leads me.

I don’t, however, want a stray dog in my bed ever again. (What was I thinking?)

If I'm Dreaming Don't Wake Me Up

We travelled for 3 hours on Christmas eve - the Christmas presents filling the van behind them, inadvertently taunting them but they didn't try to touch them or peak. We had the 2 boys sit side by side the entire 3 hour trip. They were quiet and cooperative the ENTIRE trip and not once did anyone ask "are we there yet?". Let me just reiterate the momentousness of the occasion - there was no hitting, punching or fighting of any kind. We never had to threaten to pull over - not even once.

We stayed up late and oldest son tried and finished all the food on his plate, including things he has refused to eat the past 8 Christmas' and he brought tears to his Grandmothers eyes when he asked for more. When it was time for bed no one cried or argued or complained and promptly fell asleep.They slept all night and until reasonable hour. Everyone was excited for and happy with their presents. They said thank you and properly showed their appreciation. They waited their turns patiently and made small sacrifices when it would benefit others. They revelled in each others gifts but didn't try to take anything that wasn't theirs and no one broke anything.

Then we travelled another hour to my brothers new house that was filled to the rafters with people. My boys played with their cousins and their cousins cousins ranging in age from 3 to 13 for over 6 hours. There were no fights, no occasion where I or my husband needed to intervene. In fact, there were times where husband and I were actually in the same room together, catching up with family and friends and our boys were 2 floors away. There was a small moment when oldest son became distressed, stuck on something that was just not possible in that moment. But he was self aware enough to leave the group of kids and come find me. We dealt with it privately and he listened to AND followed my advice. The whole incident lasted about 5 minutes from beginning to end.

When it was finally time to leave I informed them they had 5 more minutes as has been our pattern for the last 8 years. Before the 5 minutes was up they were both by the door, giving hugs to everyone and getting ready to leave. They were silent on the ride home and at bedtime gave no issue for the second night in a row.

If I was dreaming it all - please don't wake me up. It's far away from 2hour meltdowns, out of control and aggressive behaviour that marked all previous Christmas' a any get together of any kind. It is far from the isolation we experienced in previous years. It felt amazing and we are so happy to have experienced it. As little as three months ago we questioned if we would even be able to keep our family together. Now we are having a Christmas I hadn't even dared to believe would ever be possible and we are basking in every moment of it.

Sunday, December 26, 2010

Pressing Forward into the New Year

When your biggest fears become reality, you have two choices: One, go into complete shock and then denial and other spiraling phases of avoidance.  Or, two, go into complete shock and then adjust as soon as possible so you can continue pressing on.

The day after Christmas could certainly warrant more feel-good types of stories, but that’s just not the reality today - at least at our home. While we thoroughly do enjoy the holidays, the care-giving never stops and this year has been especially challenging for my wife and me.

There is always one child who needs attending to, and since our oldest daughter, Gwen, is still in the hospital recovering from multiple surgeries, including a freshly inserted trach, the responsibilities are continually growing. We’ve been fearing a trach since our daughter was about three years old.  That fear turned into reality just before Christmas.

Gwen was six months old when we first found out that her part of the brain in charge of the smooth muscles - the ones responsible for eating, swallowing, breathing and digestion - was not functioning as it should. At that time we made the choice for g-tube surgery that allowed us to not worry about the feeding-for-nourishment issue. And, we started to focus on the swallowing and managing of saliva, which also was very tough for our daughter to manage.

However further studies at age 2, led us to quit doing feeding therapy (no more tastes of garlic, strawberry jam and other such oddities) and to the removal of her tonsils and adenoids to prevent her from obstructing during breathing.

As we all pressed ahead, partially in the name of aspiration avoidance, the next procedure (another total nightmare) resulted in Gwen getting pseudomonas, not to mention that it didn’t do anything for reducing her saliva output (we tried the Botox injections).

Yet another attempt resulted in us trying a robinul patch to help with drying up her saliva output (the attempt warrants it‘s own post, I assure you).

Finally, we went ahead with a surgery to have her submandibular glands removed and parotid glands tied off so that her mouth would produce less saliva. This worked very well and we‘ve been managing her respiratory issues very well for the past several years.

In addition to the above, we had been meeting with an orthopedic surgeon for Gwen’s inadequate hip development and severe scoliosis. And prior to any surgery our main concern has always been Gwen’s airway - ranging from frequent suctioning to frequent respiratory distress.

And if there has been one procedure that we’ve been trying to avoid for the longest period of time, it has been the spinal fusion surgery. Not only were we waiting for growing to cease, but we were trying to find an ideal time from a respiratory standpoint.

We had finally found our window - two days before Thanksgiving - and scheduled it well over a year ago, way before our third child was born, and way before we knew that she would end up with a severe brain injury similar to our oldest daughter.

The spinal surgery went very well. Gwendolyn’s recovery was a complete success and we were well on our way to going home within the seven to 10 days that were planned, until pre-pneumonia starting setting in.

One doctor’s visit to our PICU room led to another specialist in the room to another person or that one, and eventually a sleep study was recommended by both the attending and a pulmonolgist. Although we were not happy with the length of our stay, we agreed to doing the study.

The results came back and we were told she was “obstructing” equally while she was awake as much as she was while she was asleep. The only solution: a tracheotomy.

Although depressed and saddened by this new reality, we quickly accepted the facts before us. We knew that this was in best interest of Gwen and that we had to do this surgery as soon as possible.  In fact, this surgery also went very well.

But it was two days afterward that we learned of news that made us second guess our decision-making.

We found out that Gwen was receiving six times her regular dose of diazepam (valium), a heavy muscle relaxer, which obviously affected her breathing and the results of the sleep study.

While the facts of this story certainly digress away from the choices I mentioned earlier, the point is that my wife and I could have easily chosen to be stuck in shock and continued denial, especially given that we made our decision for our worst fear, a tracheotomy, based upon ‘not-so-solid ground.’

In fact, I’d say that would have been the easiest thing to do, to stay in an ever-so-bitter place of anger. However, since there is no changing reality, no going back, no second-guessing every single scenario, no quick-fix to the current situation, we knew that moving on was our best bet.

We knew that we made the best decision we could based upon the current information we had, so we are moving on and pressing forward. We have always done this.

Playing “Monday-morning quarterback” is very easy to do when you are a special needs parent because many of the choices we are faced with - whether they be in medicine or education or government or another important facet - are among the toughest of choices a parent makes in the world.

As all of us look back, look ahead and look around us, we are making a transition from the old year into the new one. However, even with all of the tough decisions we have made, are making right now and will be making, we must constantly move forward, knowing that our choices will carry our children forward, and that it is hopeful parenting at its best.


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:

Saturday, December 25, 2010

Silent night

We're at a hotel in Vermont for the holiday break; yesterday evening we went to storytime in the lobby area. A bunch of kids and adults piled onto a couple of couches and cushy chairs by the fireplace, and girls from a local school read books like The Polar Express and The Night Before Christmas.

Max sat quietly and paid attention, which thrilled me. He listened the entire time. The girl seated next to him, who was about 5, stared at him the entire time. Literally. Blatantly. Max has been drooling a lot lately, and it seemed to fascinate or puzzle her or trouble her, one of those. She was sitting on the mom's lap; at one point, the mom looked over to see what was distracting her little girl. Then the mom turned back to the book reading.

I was kind of stumped. How could this mother not have said anything to her kid? A whispered "It's not polite to stare" would have been adequate. Better: "Honey, he's a kid like you, he's just drooling" would have been better, though maybe too much to expect. But staying silent? Not OK.

This happens from time to time: kids stare, parents don't say a peep. I realize some of them may not know what to say, but I don't find that acceptable. If the girls hadn't been reading the books, I might have leaned over to say, "This is Max, he's eight!" Sometimes just breaking the ice helps.

These parents who don't speak up, though: They perplex me.


My son.

 My son

You perplex me and amuse me

At the same time

You never go with the flow

Always fighting against it

Proudly different

Demons live in you

From your mind-boggling experiences

They saved your life

You’re always a little off

We accept you

Outsiders notice

When you are dark we worry

When you are bright we celebrate

You have a spark

Many cannot see

Ingenuity and resourcefulness

Those kept you alive and fighting

Never caring what others think

Your gift

That will take you far into your life

My wish always

A holiday and every single day

Is for you to go into the world

In any direction

And for it to be your choice

How I love you

My son

Merry-Happy Whateverholidayyoucelebrate!

May the New Year bring happiness, peace and understanding to us all.

You can find me here blogging life, here writing humor, and here in a supportive community of other special needs families.

Thursday, December 23, 2010

Gift Quandry

One of the more difficult things for me during the holidays, and apparently for other families I have heard from who have children with significant disabilities, is deciding on gifts for those children. The yearly debate seems to focus on whether gifts should be chronologically age appropriate or developmentally age appropriate. I’m sorry to say that I don’t have a good answer and debate this issue constantly myself.

Here’s a scenario presented by one family – the family has a 21year old son, I’ll call him Michael, who has Down Syndrome. Michael lives at home with his family, is in his last year of high school, and doesn’t have much of a social life outside his family members and their friends. Michael adores Mickey Mouse cartoons. His family knows he would be very happy to receive Micky Mouse DVDs as a Christmas gift, but they are reluctant to buy him something that is so chronologically age inappropriate. In past years, they have bought him clothes, DVDs the whole family enjoys, and music CDs to which the whole family would listen. Michael is happy to receive those things, but it wasn’t really what he wanted.

I have the same dilemma with my oldest daughter. Jessica is 20 years old, but cognitively and developmentally is more like 6-7 years old. She loves baby dolls and Barbie dolls. She also likes getting girly clothes as gifts, and she would also like Disney DVD’s. Like Michael’s family, I don’t want to stigmatize her with things her friends and peers would ridicule, but I also would feel bad not giving her a gift that she truly wants.

How have other families handled this issue? What recommendations would you have for families like mine and Michael’s?

Wednesday, December 22, 2010

Frosty the Spectrum Man

Like a lot of parents out there, our Christmas celebration is not represented in any glossy magazine spread or on some fashionable TV show. No, when living with the Spectrum your life doesn’t exactly come off like a Martha holiday special. So you learn to alter some traditions, leave some by the wayside, and others you try to modify as appropriately as you can. Now I don’t care how old you are…there are some things that can have you reverting back to your childhood during this time. How many of us still watch A Charlie Brown Christmas? One of my guilty pleasures every December is the old holiday classics. And thank goodness that ABC Family channel shows so many of them. I love almost all of them. Well, what do you expect from someone whose favorite movie of all time is It’s A Wonderful Life? I can get that giddy, child-like excitement when a favorite is on. To be honest, sometimes it’s the best part of a very long day. They can renew the hope and spirit that is lagging in me. Another of my all time favorites is Frosty the Snowman. To be honest, Frosty could be considered my very first crush if you listen to the story my mother repeats—constantly—every year about how I would cry when Frosty went away. She repeats it every year, without fail for many consecutive years, like some torturous family tradition. I don’t know, there was just something that appealed to me about the friendship Frosty had with Karen. Now, I have been able to share some of the magic of those classic Christmas specials with my oldest son, C. It took awhile; but that was at least a tradition we could share. Not so much with B. He wasn’t interested unless there was a song going on at the time. Then he would lose interest and get into mischief somewhere. I wished that he could enjoy the shows the way C did. Not that I am advocating mass watching of TV—I just thought it was one way he could participate if you will since he loves videos. Many of the other Christmas traditions are beyond his interest or tolerance level. That was until a couple of weeks ago when I pulled out a dusty VHS tape of Frosty. I’m sure some specialist somewhere would love to analyze the similarities and symbolism of B enjoying the same particular special as his mother. Fine. At least we have this in common. I don’t know if it was the sound effects, the song, the silly, lovable snowman himself or some subliminal pull…but he’s hooked. And in a truly BIG way. Our new after-school routine consists of watching my favorite frozen guy a scant few minutes after shedding his coat and boots. He gets so excited that I have actually dragged a mini-trampoline into the family room to allow him to bounce while watching. (Quick, someone pick Martha off the floor where she fainted. My dog might mistake her for a chew toy.) It’s a four-for-one home therapy session! He gets PT, OT, ST and Music therapy all in one 20+ minute shot. Oh, and he attends to something for more than 30 seconds. Sure, I am beginning to hear “thumpity, thump, thump, thumpity, thump, thump” in my dreams. And yes, I am starting to lose my mind with how many times I have endured Frosty… but at least we have found a common tradition to share. There is also the fact that very few in my family can tolerate Frosty. My husband always roots for Professor Hinkle—but he has his own issues. C is “too cool” for Frosty now that he’s older. (Ironic choice of words and bad pun aside.) My parents cringe since it dredges up the past with me. So, Frosty is just a Mom and son thing, like our own Christmas tradition. It’s not perfect but at least it’s something. Today in the mail, B’s godmother sent presents. Among them—God bless her—was a pristine DVD copy of Frosty the Snowman. We were on the phone and she heard him get upset because waiting for the old VHS tape to rewind was a supreme test of B’s patience which usually ended up in tears and screaming. Then she actually heard him trying to say the words of the show. That did it for her. Now, I don’t have to fear the old VHS tape breaking! And we can take it on the road if need be with our portable DVD player. It’s still not a scene for some magazine for all to emulate. Yet, when I hear him trying to sing the Frosty the Snowman song, repeat phrases word-for-word he couldn’t say before, or hear him giggle as the ticket booth man is stamping all those tickets to the North Pole…well, I realize it is our version of A Wonderful Life. And just like the magic silk hat, this shared experience has brought the chance for him to have his own special memory and tradition to life. Not bad for a cartoon snowman. I hope all of you find a moment to savor this holiday season. And sincere wishes to the Hopeful Parents “family” that the New Year bring you and your family blessings, peace, joy and your own Frosty moment. God bless.

Christmas Break

All of my sons are now on Christmas break and must admit, I view the holiday down time differently than I have in the past.  Usually, I would be worried that the boys had stopped thinking about their studies, that their brains were being morphed by their video games and other mindless activities.  I thought they were eating too much crap and generally, being overly slothful.

But this year, I look on with completely different eyes.  Last year, all of us were in shock that Jeff died so suddenly.  Getting through the holidays was a huge blur.  The amount of nervous energy all of us had kept us on the hop from activity to activity without rest or real cognizance.  The only prevailing thought was how we were going to survive and even that was confused and upsetting.

So after returning from a week-long business trip, I went to the grocery store and bought all manner of snacks, sweets and meats.  The knowledge that all three boys dutifully went to school, got decent if not superior grades, that they've grown as individuals and aren't sullen or introverted is such a major accomplishment, we all deserved a treat; a warm house, relaxation and time to reflect.

It's true, there's a lot of video game playing going on in my house.  But it's done out of contentment not out of escape (entirely).  Brains have turned to mush, but they've been working so hard all year, if they didn't have some downtime, there would literally be steam coming out of our ears.

I feel thankful and lucky to have such wonderful family and friends who helped us through this time.  For being able to share our lives with you, the other Hopeful Parents.  I still live in the same big, old house I did, which is no small feat for a widow.  The furnace still runs in the winter.  There are plenty of presents being exchanged and the noose of grief has loosened to the point where we can breathe again.

My best wishes to all of you for a fabulous Christmas and I've got high hopes we can enter 2011 with a spirit of excitement and revelry for something, even the smallest thing.

Tuesday, December 21, 2010

It's a Whole New World, Baby!

I've been reading the weirdest stuff lately. Not weird, really, just weird for me. POW accounts and memoirs by survivors of violent crimes, tales of child abuse and war, and other tragic stories that are typically far too painful for me to stomach.

In general, I figure the depths of human depravity are what they are and me having a head full of their horrors does nothing to alleviate anyone's suffering, so why all this reading? For months now, I've been reading my face off, immersed in this stuff. My husband was perplexed, asking my why in the world I had abandoned my usual fare in favor of studying (as Kurtz would say), "the horror, the horror."

Why? I don't exactly know, but as an avid armchair Freud, I can hazard a guess.

I'm trying to get my feet under me. I'm trying to regain a perspective that lets me live my life, this life that is the only one I have to live, where things are so unbearably fucking unfair.

Because things are unfair. Carter is mentally ill, and that's unfair. My older kids went to live with their dad, propelled by an anger so hot they hardly glance back at the mom, step-dad, and brothers they left behind, and that's unfair. We're crippled financially, and that's unfair. Our outrageously expensive health insurance denies some of the therapies that Carter urgently needs, and that's unfair. Our lives have narrowed because Carter's needs are emotionally overwhelming for Brian and me, and that's unfair.

No doubt about it; there is much that is unfair.

And nobody ever survived extraordinary circumstances* by wailing endlessly about unfairness. Immaculee Ilibagiza survived the Rwandan holocaust in 1993 by hiding in a tiny bathroom with several other women. They sat, crowded, completely still and silent, with barely enough food and water to sustain them, for weeks. She survived by praying constantly, not by ranting about the unfairness of it all.

I haven't quite shifted my perspective yet. Today, when I got a letter from our insurance company informing me that Carter has been denied for both occupational and physical therapies** (therapies that everyone on his treatment team agrees he needs very badly), I wanted to curl up under the bed and cry my face off.

Honestly, I don't ever want to be too accepting. If some of us don't rail against the unfairness of it all, how will the insurance companies know that they're acting like assholes?

There is also this rebellious streak in me. Early on, when we were flailing in the dark, trying and mostly failing to find help for our troubled little boy, I heard over and over, "You have to make the best of it!" There are dozens of versions of that, of course: be grateful for what you have, count your blessings, at least you're not dealing with (fill in the blank), on and on. 

I don't believe that any of us has to do that. I'm trying to find acceptance now because I'm able to do that, and I'm only able to do that because I grieved and raged and struggled. I felt all those painful feelings and I will continue to feel them. Keeping a stiff upper lip? The only purpose of that is making other people feel comfortable. 

No, I have no use for false bravado. I'm looking for something different; something deep and genuine. Carter is stable now, and in this pause, this break in the storm, I need to heal the parts of me that have been wounded in the past 8 1/2 years. 

Be patient with me. It turns out that building a new world view is a time consuming endeavor! 

*I'm not comparing anything we've experienced to the horrors endured by POWs, violent crime victims, or any of the other things I've read about lately except in the most metaphorical way. Some things in life can only be understood by those who have experienced them, and I would never presume to understand those things through which I have not lived.

**Our insurance company covers OT and PT if the qualifying diagnosis is (or is caused by) illness, injury, or disease. Since Carter's injury (probable perinatal stroke) is not verifiable, he doesn't qualify. Our insurance doesn't cover developmental delay at all.

Adrienne blogs about life and family at No Points for Style.

Knowing the Dark

To Know the Dark

To go in the dark with a light is to know the light.
To know the dark, go dark. Go without sight,
and find that the dark, too, blooms and sings,
and is traveled by dark feet and dark wings.

- Wendell Berry

I began writing my book about raising my daughter Sophie over six years ago, and while the first chapter is titled "Diagnosis," all it really does is recount that day when I sat in a metal folding chair in the emergency room of a New York City hospital, nursing my three month old baby while two impossibly professional Fellows in Neurology broke the news. Sophie was "diagnosed" with infantile spasms of unknown origin or cryptogenic epilepsy later that week when all the tests came back negative, and so began our fifteen-year odyssey of trying to figure out what caused the seizures and what might make them stop.

They have never stopped, and it was only last month, three weeks ago to be exact, that we learned what might, perhaps, be a diagnosis, the answer to her seizures. Or not.

Throughout this decade and a half I have remained steadfast in my belief that Sophie's intelligence is deep, so deep as to be only perceptible through the darkness of her eyes. It is that dark depth that has kept me going, hauled me up and out of another depth entirely, shaped and molded me, made me who I am.

What I have gained from these fifteen years of navigating in near-darkness is far greater, I believe, than anything I might gain from the sliver of light offered up in the ghostly digital reading of my daughter's brain. 


Elizabeth wishes everyone a Merry Christmas and a joyous new year. The rest of her blogging world is over at a moon, worn as if it had been a shell.


Sunday, December 19, 2010

Hope on a River

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: You don’t give up.”  - Anne Lamott


Sometimes I think that as much as I have defined my hopes over the years, it is they that have defined me. Hope is the thing that gets us from one day to the next. And those days turn into weeks and months and years, until finally we look back, exhausted but still hopeful, and see where those hopes have taken us.

My hopes have certainly changed over the years, evolving and developing as my son has. I remember hoping when he was six years old and learning to talk that someday we could have a conversation. I remember hoping that someday he would stop screaming and bolting away from me in parking lots or other public areas when a noise startled him. And I remember hoping, as he started talking more and bolting less, that someday I could take him on an international trip with me. That he would be safe, and that he might even enjoy it. Because I love to travel – my whole family does – and someday I wanted to share that with him. It’s a frivolous hope, I know - unimportant, and certainly nowhere near a matter of life or death. And in the grand scheme of things, in all of the hopes that I’ve had and still have for my son, I can assure you that international travel was low on the totem pole. But still, it was there.

Last month, after a year of planning, both of my sons (one with autism, one without) accompanied me to Thailand, where we met up with my father on his annual Thanksgiving in Thailand trip. We had purchased our plane tickets back in February, timing our departure with the school district’s break for the US holiday. What we didn’t know was that our arrival date coincided with the festival of Loi Krathong (pronounced loy krah-tong), a Thai holiday that takes place on the evening of the full moon of the twelfth month in the traditional Thai lunar calendar. In the western calendar this usually falls in November. And this year, it just happened to be on the day that we arrived.

It was night when we flew into Bangkok and checked into our hotel. We slept well and had continental breakfast before heading out for a stroll that morning. Everywhere we walked, people sat outside making and selling krathongs – handle-less baskets traditionally crafted from intricately folded banana leaves and loaded with flowers, incense sticks, candles, and other offerings (you can see a photo of some krathongs at this link). They are beautiful in and of themselves, but it’s what they symbolize that really hit home with me. The krathongs are released into waterways across Thailand as offerings of hope – an opportunity to wash away the past year’s misfortunes and let go of resentment or fear, so that one can start fresh, with hope for good fortune in the future. A festival about hope! How wonderful is that?

That night, after a lovely outdoor international banquet at our riverfront hotel, we watched as the locals picked up their krathongs and walked down to the dock when it was dark. There they stood, holding their krathongs in front of them, eyes closed and heads bowed for a moment as they meditated. Then they placed their krathongs in the river and watched them float away. Parents held their children by the hand as they walked to the dock, bent down, and, it appeared, instructed them about what to think of before they released their krathongs into the river. I watched in wonder; I was so moved by this beautiful tradition.

Then it was our turn. The hotel had provided pretty krathongs for its guests, and we each picked one out, lit our candles, and slowly walked to the dock. I thought about all the things I needed to let go of in my life – fear, resentment, stress, sadness. I thought about all the hopes and dreams I have for my children and myself and the fact that at that moment, where we stood there on the dock of a river in Thailand, one of my hopes had come to fruition. We were there; we had made it. I released my krathong, and then I looked out across the river and saw dozens of tiny candle flames floating down it, bobbing along in the water. And I watched as my family’s krathongs floated away together and bobbed along with the rest of them.

The remainder of our trip was just as magical. We had our challenges, of course, as my son (now 16) still has a tendency to wander and has a very limited palate. But overall we were blessed with safe travels and wonderful memories. And hope that continues to evolve.

                               Tanya writes TeenAutism.

Finding Some Me Time

Having a child with special needs-- especially a rare condition-- can be extremely isolating.  Over the years I've found it difficult to find people who I can relate to that are able to understand our lives and don't look at us with pity or place us up on a pedestal.  That's one of the reasons why networks like Hopeful Parents are so fantastic; because parents of children with special needs don't necessarily live in areas that have a large population of others going through the same sorts of issues.

However, I also found myself in recent months having a hard time separating out my own hobbies and interests from the constant role of motherhood I find myself playing.  Sometimes it seems like absolutely everything I do relates in some way to parenting Connor, and it can feel like I no longer have an identity other than that of "mommy."  Since working or going back to school is out of the question for me right now, I needed to find some other way to get that sense of myself back (and to get the chance to actually talk to people who are not four and a half years old and nonverbal).

So I joined a roller derby league.

For those of you not familiar with the activity, roller derby is a full contact sport on roller skates.  Yes, I know it sounds a little crazy and extreme.   But it's been the perfect fit for me!  Practices are the evenings when Jeremy can watch the little guy, so it doesn't conflict with my parenting role.  It's extremely cathartic; if I've battled with the insurance agency all day or spent hours on the phone trying to book an appointment I can take out my frustration by running into other people really really hard.  Also I get to dress up in ridiculous outfits, use a cool alter ego name (I'm taking suggestions) and I can spend an entire evening skating with a group of fantastic women and not have the topic of children come up once.

I'm not suggesting that every mom of a special needs child run out and join a roller derby team (sorry dads-- roller derby mens' teams are few and far between).  But I do think it's a great idea to have some sort of recreational activity in their lives if possible that doesn't involve being a parent, whether it be Bunco Night, a knitting circle or a local rugby team.  I had no idea just how much I missed having a niche outside of parenthood until I went out and found myself one.  If I'm having a particularly frustrating day I know that I at least have derby practice to look forward to that evening, and it keeps me refreshed and focused on the task at hand; parenting my son to the very best of my ability.

It's a lot easier to balance the stress of managing my son's care when I'm pairing it with tremendous amounts of fun!



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


Oh Christmas Tree, Oh Christmas Tree

For Pudding's first Christmas, I began a new tradition of collecting Christmas ornaments from the various places we visited.  Over the first couple of years of her life, we picked them up from Belgium, Luxembourg, Germany, and France.  I particularly like the handmade wooden ones from that part of the world, and we enjoyed traveling to the Christmas markets in search of new ones.

Like many other families, following Pudding's ASD diagnosis, our lives were forever changed.  Instead of moving on to another country, we decided to remain in the US for a tour to learn all we could about the various therapies and supports she needs.  Now there is no budget for travel.  The only place we have been as a family in the last year and a half is to Florida to visit family.   I thought my ornament collection would dwindle to a halt, but I was wrong.

This year Pudding helped me to decorate the tree.  As placed each one on the tree, I told her the story of each one.  What I didn't realize until then, was that I'd unwittingly started a second collection of ornaments.  I unwrapped a Bambi ornament, the nickname we'd given her before she was born.  Next came a "Where the Wild Things" ornament we'd bought back when she insisted upon hearing that story every night before bed.  Then last year, we'd got her a Sleeping Beauty ornament when that became her special interest.  One day over the summer at a craft fair I even found an ornament with Bashful.  All the special interests my girl has ever had our hanging proudly from our tree.  This year I'm going to have to find an ornament with Sesame Street's Ernie for Pudding, and a train for her brother.

It occurred to me then that our Christmas tree is still telling our story, it is just a different journey now.  This weekend we had a party, and as an activity I helped the children make Christmas tree ornaments.  Even a year ago Pudding wouldn't have had the fine motor skills or patience for such a task, but with a lot of help, she made her own ornament.  I'm going to hang it proudly on our Christmas Tree. 

That ornament tells the best story of all.

Spectrummy Mummy blogs most days about life with Pudding (4) and Cubby (1) at

Friday, December 17, 2010

The Christmas Card

Got a Christmas card in the mail this week from an old friend from college. We’d kept in touch for years, then she moved and I lost track of her. She found me again and caught me up on all the changes in her life: dumped old (and longtime) boyfriend, moved, got a new job, found a new boyfriend, bought a house. Big stuff.

Sat down to write her back and didn’t know quite where to begin. Back when we were exchanging Christmas cards faithfully, all mine contained was the yearly photo – no words, other than our names and perhaps, “Merry Christmas.” Now I’m feeling like I want to really catch up, but not sure what she wants to hear, what will overwhelm her, what she’ll understand, and how important any of it really is anyway.

How do you possibly explain the life of a stay-at-home mom of two children, one with significant challenges, challenges that consume your days, your nights, your sleep, your weekends, your every everything? And even if you manage to do that, how do you not sound completely crazy? My life and I don’t sound that crazy to those “on the inside,” but to someone that doesn’t walk this walk, not even a little bit, it must.

I finally decided to bullet point my life since college, the highlight reel, so to speak. I decided not to try to explain the inexplicable. Not to try to get her to understand my life anymore than I can possibly understand what its like to be 47, never married, never have kids. I can imagine, but I cannot understand. What I finally understood is that I’ve put way too much time and energy into getting others to understand what they simply cannot. It’s not that they won’t, it’s that they can’t.



Ed note: Yesterday, I posted the following story about my daughter, Brooke on my blog. Brooke is seven and a half years old and has PDD-NOS, a form of autism - along with a host of other conditions. Among them are pervasive humor, dogged tenacity, overwhelming grace and a wild imagination. 




Brooke, summer 2010, stopping to 'pray' (with Isa the Iguana) in the middle of the local play space



Brooke will often tell me that she is going to pray. She will say something to the effect of (I can't remember the exact line right now), ""You stay here. I'm going over there to pray now." I'm sure you won't be shocked to hear that it's a line from Godspell (my girl's all time favorite movie.)

She is acting out the scene from the movie in which Jesus tells the 'disciples' to stay behind as he heads out to pray alone - an obvious allusion to the Garden of Gethsemane, where Jesus says, "My Father, if it be possible, let this cup pass from Me; nevertheless, not as I will but as Thou wilt."

She looks so peaceful when she 'prays', though I've always assumed at those moments that she was simply acting out a favorite scene from a favorite movie, as she so loves to do.

Sometimes she will give prayer 'instructions'. As she sits down and assumes the position, she will tell me - or anyone within ear shot - that to pray, 'You put your head down like this and close your eyes like this'. Last night, she did just that.

She was lying across the top of the couch, her hands pressed together and her eyes closed.

She said, "When we pray, we either put our head up or down and close our eyes and dream it."

I'd never heard her say, 'dream it' before. I was fascinated by this new addition to the routine.

"You dream it, honey?" I asked.

She acknowledged my question with a quiet, "Yeah" and then added the following.

"And swirl around and feel it."

So much for simply acting out a favorite scene from a movie. I think my daughter just taught me to pray.


I was absolutely blown away by what I thought was Brooke's poignant and insightful description of something so completely abstract. It struck me as wondrous on so many levels that I proudly shared the story with everyone; up to and including my favorite pastor, who said that she was going to use Brooke's words next time she led prayers. (Hi, Karla!)

Communication has never been easy for my girl. Her early speech was entirely echolalic, meaning that her words were an 'echo' or repeat of something that she'd heard before. Her every utterance could be traced back to either the very last thing she'd heard (those were the easy ones) or a book, movie or television show that she'd memorized and stored away in that incredible brain of hers.

We spent a lot of years in detective mode - constantly sifting through our catalogue of scripts in often desperate attempts to understand what it was that our girl was trying to communicate to us. We'd often call in the big gun - her older sister - to help us with the more obscure references. Thank God someone else in the house has an uncanny talent for attributing lines to the cartoon characters from whom they originated. 

Over time, Brooke began to use scripts far more functionally. I would marvel at her ability to wedge them into her life in such a way as to make them useful. (Try it sometime. It's far more challenging than you might think.) We were now able to spend far less time playing detective each day as Brooke's facility with words increased. With countless hours of ABA, speech therapy and social pragmatics came the slow but steady emergence of novel speech. And we celebrated heartily. The idea that my girl could use her OWN words to communicate was nothing short of miraculous.

Yesterday's post was such a celebration - a celebration of novelty. Of originality. Of independence. Until a reader left the following comment.

Not to be Debbie Downer, but that’s the Blue’s Clues Imagin-ation episode script.

“First I close my eyes and dream it. Then I swirl around and feel it. Then I open my eyes, and I can see it there!” sings Steve to Mr. Salt.

Still, I’d really would pay attention in church if those were actually the words that the priest said. Can’t you envision pews full of congregants swirling silently with their eyes shut? Prayer with power!

Love you DOAM and Brooke!

I stared at her words. I went momentarily numb. I blinked back tears. And then I forwarded it to two dear friends with just one line attached: Please tell me why this shouldn't make me cry. Please.

Blue's Clues. My girl was reciting Blue's Clues. What I thought was so profound was originally said to a Salt Shaker. I was on the edge of questioning every incidence of 'novel speech'. Were they really all just scripts that I hadn't recognized? Was the progress all an illusion? I was headed down the rabbit hole. 

One friend made me laugh. Thank God for the friend who makes me laugh. And the other said this:

"Because whether it's scripted or not is irrelevant. She could be quoting all KINDS of things she's heard, and THIS is what speaks to her!"

And then a comment came in from another reader, responding to the one above.

"Nice remembering! It DOES tell us something about Brooke’s feelings when she’s hooking these two scripts together. It’s still echolalia, but what a powerful message she’s pulling together to communicate!"

First of all, don't you just love that she starts out with 'Nice remembering'? Gotta love it. And she was right. Just as my friend was right. Brooke had a WORLD of scripts to choose from, just as we all have a world of words to choose from. Nonetheless, she chose THOSE words.

I don't make up words (well, for the most part). I use the ones I have in my lexicon. I string them together in ways that express whatever it is that i am looking to communicate. And isn't that just what my girl did? She used the tools that she had at her disposal to create a picture perfect description of prayer. And while the first line might have come from Victor Garber in a clown suit and the second might have been said to a condiment, I'm sticking to my guns. It WAS profound. It was insightful. And my girl really did teach me to pray. 

Though I might go back to the post and add just a couple of words to its last line. 

In her own way, I think my daughter just taught me how to pray. 

Yeah, that's better. 


Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - nine and-a-half year-old Katie*, an utterly fabulous, typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into. 

Parents Are People

It was a Friday night, and I was all out of hugs.

My son was having a particularly hard day.  And the more difficult things are for him, the more hugs I get.  Not gentle hugs, mind you.  They are the squeeze-you-so-tight-you-can’t-breathe hugs.  The kind of hugs that aren’t out of affection, but out of a need for sensory regulation.  And for my son, only “hugs from Mom” will do.

By 7pm on a Friday night, I couldn’t do it anymore.

We were upstairs in my son’s room and he was asking for more hugs.  Begging, really.  He was on the floor with his giant 3 foot long stuffed dog on top of him.

“Mom!  Mom!! Mom!!!  Can you lay down on your belly on top of the dog with me under it and squish me?  Mom!  Mom!  Mom!!”

I stared down at the giant basket of laundry that I had been trying to put away for three days.

“No, Mom can’t right now.” I said.  “I need to put this laundry away.”

“Mom!  Mom!  Mom!!!  Pleeeease!!!”

I started to walk out of the room, which is what I do when I’m about to lose it. 

My husband was standing in the doorway.

“What does he want you to do?”

I explained that he wanted me to lie on the big stuffed animal and squish him under there.  I said I didn’t want to because I was afraid I’d hurt him.  We both knew that was a giant lie.

My husband walked into the room and wrapped his arms around the stuffed animal and our son.  And in an instant, the whole room became calm.  I watched our son’s body relax and a giant smile came over his face.  For the first time in hours, he was completely quiet.

“Well,” I said to my husband, smiling slightly, “I guess you finally have your hug from him.”

“No,” he said.  “It’s like Temple Grandin said about her hug machine.  Deep pressure input without a human touch.  That’s all this is.”

His words floated out there in that calm and quiet room. 

In that moment, I knew he got it.

In the year since my son’s autism diagnosis, my husband and I have both tried to connect with our son on different levels.  He’s the fun one who makes giant Hot Wheels tracks through the house and creates monster truck stadiums out of blocks.  I’m the logistical one who packs his snacks and lunches, helps him get dressed in the morning, and makes his juice just right.  I’m also “queen of all things sensory integration”.

Until that Friday night.  That night was the first time my husband was able to step in to my role and help our son when I couldn’t. 

And it was awesome.

Everyone should have someone they can turn to when they can’t give any more – a spouse, a partner, a relative or a friend.  Someone who will be there without hesitation and hug when you cannot.

For me, that is my husband. And like me, he is a Hopeful Parent too.  That’s the best gift I could have received this holiday season.

Parents are people
People with children
When parents were little, they used to be kids
Like all of you, but then they grew
And now parents are grown-ups
Grown-ups with children
Busy with children, and things that they do
There are a lot of things a lot of mommies
And a lot of daddies, and a lot of parents can do
” – Parents Are People from Free To Be You and Me

Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  She writes about that and other things at Try Defying Gravity and now has 1,654 tweets from @trydefyinggrav.

Thursday, December 16, 2010

I'm back

Hello blog. I've missed you.

I've been suffering from writer's block. I guess. I think about my blog every day, and think of things I'd love to write, but then I don't. There are a couple of reasons for this.

A lot has been happening. I have about a million Lively updates, and the longer I wait, the more I have to write. So the task feels daunting, and I put it off.

The big reason I haven't written lately is that I am struggling. Some days are good, even great, and others overwhelm me. And that feels so personal, that I'm not always sure that I want to share it. But I'm not sure how to tell Lively's story without getting personal.

I've never been someone who keeps things extremely private, but certainly to a degree there are events, thoughts, feelings that I don't share with people I don't know well. A lot of people read my blog (maybe not anymore, because I've been away for awhile), and I don't want to censor myself for a particular friend or family member or coworker. There's no point in doing this if it's not authentic, I suppose. But I'm becoming more aware that what I want to write isn't really about Lively, but about my experience with Lively and Annie and Pete. And my experience, lately, feels almost too ugly to record. But I suppose I will. For all the world to read.

So continue to follow at your own risk. It's about to get personal.

(Well, not right now. I hope to post some Lively updates in the next few days.)

When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.


She shuffled in, not acknowledging the frozen night air behind her on this first below zero day of the season.  Her words flick out at me like the beginning move of the game of 52 card pick-up.  Her cheeks are rosy both from cold and from elation.

“Well, it was good.  Mom, everyone was so thankful and I feel like I hardly did anything!  I even cried a little.  People who don’t have so much were so happy just for me to hand them desserts.  One guy yelled to everyone ‘A cupcake from Cate, I feel so blessed!’ And I don’t know why it made him so happy, but then I got happy.   I helped people carry their plates through the line and back to their tables.  Did you know, mom, that when people don’t get enough food it makes them kinda shaky? So some of them needed a little help carrying so the food wouldn’t wobble off.  And even then they thanked me so much like I just did the greatest thing. I didn’t, though.  I just carried a plate….”

She went on to tell how grandma, who had taken her to serve a holiday dinner at St. Vincent de Paul where she’s a regular volunteer, showed her off everywhere.  She said even people grandma didn’t introduce her to knew who she was.  When there was time, they looked around at the center a bit and Cate heard about other services in addition to meals, that SVDP provides for those in need.   A volunteer in another area asked Cate a few questions about why she was there and gave her a candy cane.

She brought cookies home for her sister which may have been the highlight if it weren’t for the rest of it. She seemed truly surprised by the feeling she got to take home with her and was clearly touched at how joyful an experience it was to give a little time, chat it up with others and lend a respectful hand.  She’s volunteered before, at the library, at our inclusive summer camp, through girl scouts.  But I think this hit her in a different place than all that.  She gave, but clearly felt that she got more back in return.  She asked grandma when she can go back again.

Cate's younger sister with cognitive and communicative differences must live a paradox daily – she’s both to receive incessantly, but also develop independence.  She’s to accept all that others have to give her – teachers, therapists, adults, children, strangers.  Addie is to serve as a receptacle for their gifts whether given professionally or personally, appropriately or not.  And then on the other hand, the adults paid to be in her life set goals for her in the name of independence.  “She must learn to do it herself, on her own.”  We must make shoe tying and coat zipping a priority over literacy in the name of autonomy.  Addie is to accept all other agendas and yet somehow develop her own, but only when it comes to physical, functional tasks. 

She is groomed for future isolation.

But what about interdependence?  What about a focus on helping her recognize opportunities to offer her own talents to other humans? She is a dimensional human with original thoughts, not just a smiling simpleton struggling to make her own toast.  How about teaching Addie how to execute on her feelings of generosity and compassion, of interest beyond herself? What about the great feeling her sister gets to savor at only 11 years old when she gives of herself?  Where are Addie’s receptacles for her gifts, for what she has to offer?  It isn’t independence that makes the world go round – we’d all live our whole lives in tall, windowless grain silos instead of many and varied communities, if independence were the key.  No, the world spins by virtue of people working with others in reciprocal relationships – filling a gap for someone when they need it, trusting they’ll reach out when you need it.  Give and take. Not just give.  Not just take.

Cate lent a hand.  The hand was filled with dignity, respect and connection.  She wanted to do right by these people because just because they were people.  And they repaid her small gestures 10-fold with their happy thanks, their mutual respect and their confirmation of human connection.  She recognized it, was moved by it and wants more of it.

That’s on Addie’s wishlist, too.  ‘Santa’ has resolved to find ways to get that in both girls' stockings in 2011 and beyond.

Peace, hope and joyful noise to you this season and all that come after it.

Wednesday, December 15, 2010

How Do They Make Ten Pages About My Kid So Stressful?

Things have been going really well for my family lately. (Knock on wood. Do it! Do it NOW!) Jack, my son with autism, has been on an even keel for the most part, his school situation is good, and we've all been feeling pretty happy.

Naturally, the universe has ways to slap you down even when you're feeling positive about things. My slap-down came in the form of the report that finally arrived from Jack's recent neuro-psych evaluation. I have some suggestions for the people who wrote this particular report.

• Maybe print the report on fun paper with hearts and rainbows in the background. That whole stark black and white words on the page is kind of a drag.

• Can we come up with a different word for "impaired"? Or at least not use it as much? Like, maybe change a few instances of "impaired in XYZ skills" to "tries super hard at least part of the time in XYZ skills, but isn't quite there yet."

• Enough with the  CELF-4 and MOTR/L and VMI SS and WRAML-2. I don't know what those mean. It doesn't even help all that much when you write the full name out next to it. Let's give them fun names like "How Much He Talks" and "How Much He Understands" and "He's Not Just Ignoring You, There Is Actually an Issue With His Brain."

• I don't know what "morpheme" means. Please use a word I know. And that word shouldn't be encephalopathy.

• Add a section on Lego proficiency. We would score through the roof on that one.

• Tell me not just that "his speech is largely echolalic" and that "no spontaneous conversation was initiated," but that I should remember that when he is at home he is exploring coming up with his own words more and more. As a matter of fact, just remind me in general that the testing environment is not the same as anything else and that the behaviors you noted may not be typical of him in general.

• On any test in which my child scores in the 1st percentile, add a compliment, like "the shirt he was wearing was really cute," or "he didn't have any obvious smears of peanut butter on his face."

• Add more of my son's personality to the report. I enjoyed reading that "Jack occasionally stated, 'Delete!' to the examiner when she gave instructions he did not wish to follow," even though that's not what he was supposed to do. I also liked reading that Jack's response to a request to tell a time that he felt happy was, "7 o'clock."

I know Jack is a great kid. Most of the time I believe that he has a really bright future. Jeez, though, those reports can be hard to read—both literally and emotionally. The fact that it is full of useful information, observations, and recommendations doesn't make it much more awesome.

Maybe if they sent a cookie with it.

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. She believes rodents are funny, autism may be different than you think, and that if you have a choice between laughing and crying, you should always try to laugh—although sometimes you may have to do both.

Tuesday, December 14, 2010

The Faint Light at the End of the Tunnel

We’ve been having a tough time at home. I’ve been hearing this a lot from parents lately, most attributing it to the hectic times of the holidays, with schedules interrupted, different people coming and going, and busy places to visit. My son’s teacher said that this time of year is always challenging because the kids have been in school a long time without any significant breaks.

Whatever the reason, my son Moe, has been having a lot more temper tantrums and meltdowns. He’s become sometimes sensitive to light, insisting on playing alone in his room with the door closed and lights off, piling his toys and books into his crib and burying himself under the covers. When he’s not in his boy cave (the three year old equivalent to a man cave), he’s over stimulated, chewing everything, spinning on a chair, splashing wildly in the bath. I spend a lot of time managing the extremes and trying to keep some level of calm in our house.

I am physically and emotionally exhausted. I feel like I did when I had a newborn in the house, tired, forgetful and distracted. When Moe was first born, the one thought that got me through that overwhelming time was “it will get easier.” I knew that I had to get through it, survive for a few months, but I was assured there would be a time when things would get easier. And sure enough, those feedings stretched out, Moe started sleeping through the night, and things did get easier.

But it was still hard. Everything was more challenging, even just getting in the car to go to the grocery store. Will he fall asleep in the car, jeopardizing an afternoon nap? Did he eat enough at the last feeding so I won't have to find a spot to nurse? Do I have everything I need in the diaper bag? But time passed, and once again, things did get easier. Then I had a second child and it started all over again. Now I had sleepless nights and a toddler. I had to learn all over again how to accomplish these same simple tasks, with new challenges like getting two kids in and out of the car, one of whom was (and still is) a toddler who would dash across a parking lot if I wasn’t holding securely to his hand. And then Moe wasn't talking, and there were doctor's appointments and assessments, and finally an autism diagnosis. I remembered how hard I thought it was when I had only one happy little baby. And I realized, that was the easy time. And it's over.

I recently wrote a post about a particularly rough day. Fellow bloggers and parents assured me that things will get better. I survive each day with this in mind. I tell myself that we will someday look back at these early years as the most challenging times of our lives. We just have to slog through it. But now I’m not sure. What if Moe’s behaviors don’t improve but he just gets bigger? What if this is the easy time?

I wish I could conclude on an optimistic note. I want to say that if this is the easy time, I will learn to enjoy it now, and then, if things do get better (which they probably will), I’ll be pleasantly surprised. But if things don’t improve, I’ve learned how to enjoy the moment we’re in. But honestly, I’m not sure how to do that. So right now, I’m just trying to survive, a day or even an hour at a time, believing that there is a light at the end of the tunnel, however faint.

Monday, December 13, 2010

Mirror, Mirror on the Wall

What do you see when you look in the mirror? A well trained practitioner of TCM will probably look at very different things than you. You are all finely tuned to changes in your children’s health, behavior and demeanor, but here are some additional ways that you can learn more from Traditional Chinese Medicine. 

Outer Appearances Reflect Inner Health

Thousands of years ago when Chinese Medicine was taking root, there were no x-ray machines or the very sophisticated MRIs (magnetic imaging). These original healers and diagnosticians depended on their finely tuned observational skills in order to assess their patients. Some of those early ideas seem simplistic today but many elements of diagnosis persist because we do understand that that outer appearances can provide clues to a person’s health. In TCM, bodily observation includes looking at the face, eyes (do you have dark circles?), body type, demeanor, and tongue.

Being able to observe, reflect and respond are skills that serve us well. I remind myself of this several times a week as I work with my patients. You observe, reflect and respond to your children for the same reasons – to provide the best help of which you are capable.

Previously on this blog, I have advocated for the idea of maintaining an inner calm in order to act with purpose and clarity. We remain open to signals because these signs can give us warnings, allowing us to attend to problems before they get out of hand. You can learn more about yourself and others using Chinese Medicine. One of the most intriguing areas of the body to study is the tongue. Want to know more?

Stick Out Your Tongue

Chinese medicine has used tongue diagnosis for thousands of years. An experienced practitioner can look at your tongue and begin to understand your internal problems but you can also be aware. Look for changes in the color of your tongue, teeth marks, and coating. These changes may indicate that something is amiss. Note any changes in shape (do you have a puffy tongue ?)  and coatings. A healthy tongue is naturally the same pink-red color as the lips and has a thin white coating. If it's too pale, too puffy or too red it may indicate an imbalance. Someone who is very stressed or irritable may have a tongue with a red tip and sides. Also if you see a thicker coating developing you maybe catching a cold or flu. If the coating is yellowish the illness has a hotter nature.  For example a cold with a sore throat and yellow phlegm.  A thick white coating would indicate a cold without a sore throat, chills and clear/white phlegm. So if you see a thick coat developing take precautions, sleep more,  keep warm (especially a scarf) and try taking some Echinacea or Astragalus, to boost your immune system.

I hope everyone has a happy and healthy holiday ! Best Wishes !


College Girl

My daughter is coming to the end of a successful first semester at college. And boy, are those words I thought I'd never say, both the "college" part and the "successful" part. As much as we try, as parents of children with special needs, to stay afloat in the sea of bad testing scores and professional predictions of doom, as much as we try to believe in our kids' abilities, there's always that voice that says, Maybe those experts are right and my children really won't amount to anything. You worry about hoping, and it's easy to doubt achievement.

In my last conversation about my daughter with her high-school case manager, the woman made sure to tell me that my girl would do poorly on the community college's placement test. I'd been led to believe, certainly, that good grades for special students in high-school resource and inclusion classes were mercy grading, indicative not of real ability but of the good will of teachers and the dumbing-down of work. As much as I feel my kids really have learned and grown and succeeded in their years of elementary and secondary schooling, there's that voice saying, Well, it's not like REAL work that REAL kids get.

And indeed, my daughter did crash and burn on the placement test. On the plus side, though, that put her into a program of remedial courses designed to motivate the bottom percentiles to perhaps make it to a second semester. God bless community colleges for taking our money even if they don't think our kids have a chance, you know? I mean that sincerely, because that's the only way my kids are going to get a post-secondary education. They're never going to prove themselves on a standardized test.

As is her pattern, my daughter is doing much better in the classroom than her test score would lead anybody to expect, with passing-or-better grades across the board. And interestingly, she's become the student the other students turn to when they need help. What an amazing position for a kid who's always had extra assistance herself to be in. She's answered Facebook and e-mail queries about homework assignments, helped classmates in the library to complete math problems, even scanned a syllabus and e-mailed it to someone who'd lost hers and needed details of an assignment imminently due. She always turns in her homework, has her speeches ready when they're due, gets her projects done on time. Those are skills that aren't well-evaluated in standardized tests, but I have to think they're going to serve her well in real life.

So now can I believe? She's succeeding in these classes without the help of curriculum adjustments and paraprofessionals and special-education teachers tweaking her tests. Does she get to own this achievement now? The case-manager voice in my head says Well, it's just remedial, it's not like REAL college. One of these semesters, we're finally going to shut her up.

Sunday, December 12, 2010

Closing Tomorrow!

We've had several requests to move-up the closing date of our Pampered Chef fundraiser so everyone receives their items early.

We will close the show tomorrow, and all items will be delivered by Saturday.

Hurry and get your order in! We will no longer accept orders after 5PM Central time on Monday. To browse products online, click here and type Hopeful Parents in the box marked organization so we get credit.

And remember...everyone who orders is entered into a raffle for a $50 gift certificate!

One Liner Response

We are a family that is often on out and about in our community.   We like to participate in local events, visit museums and zoos, grab a bite to eat at restaurants and generally have a good time.  I have always been the out and about type, but I find that our adventures outside our house now include more conversations with random strangers then ever before.

Emma is three years old and attracts quite a bit of attention to herself.  She is all smiles and flirty with people we meet in public.  She has the most amazing eyes and people are just drawn to her and come over and start to strike up a conversation.  Emma is quite hospitable to them for a couple of minutes before she looks around to find another person to lure into her web while she leaves me holding up a conversation with the stranger.  This could be because Emma doesn't talk so her conversations with the strangers are very short, but I think the reason I am left to hold up the conversation is more because people seem to want to know - why is Emma in a wheelchair and not talking, what is it like to be her parent, etc.  And so as often as not they continue to stand around wanting to talk with me long after their "chat" with Emma has ceased.

I have gotten good at managing these conversations, and have a variety of responses ready based on our available time and how much I like the person.  One group that seems to be fond of Emma and wanting to talk to me is the little old lady.  I'm sure you've met her.  She is the one who generally says something to the effect of "God only gives children like this to parents who can handle it."  Oh, boy!  Although I have a few responses at the ready, I often quote Mother Theresa in response - "I know God will not give me anything I cannot handle.  I just wish he didn't trust me so much."  

But, the other day I came out with an entirely different response.  

We were out eating lunch and the owner came over to talk with the girls and give them a little present.  She was a lovely woman who had a nice way about her - she treated Emma great by speaking directly to her and wasn't a bit patronizing at all but she was very curious.  And, in the course of the conversation she had to say it - "You know, God only gives children like this to parents who can handle it."  And immediately a great feeling of love came over me and I heard myself saying that she is right.  My husband and I must have done something right to be so blessed with both our girls.  That only we are able to know how truly wonderful it is to have Emma and Julia with us day in and day out.  And then she looked at me like I must be crazy!  Because she can't even begin to understand my life.  

Other people capture glimpses of our life.  Feeding Emma while my plate grows cold.  Carrying her around and helping her play with other kids.  Lifting her wheelchair in and out of the van, going down the slides at the playground with her, acting as Emma's arms and legs in her daily life.  Checking to make sure her cochlear implants are working correctly.  What they really see is all the work involved with raising Emma and they see me doing all this while managing to ensure our typically developing almost 5 year old is getting all the love and attention that she needs.  

And while raising Emma does require more work than raising typically developing children who can talk, hear, and move on their own, I find that it is often filled with great joy to counter-balance the work.  

What people don't see when they glimpse a brief moment of our day is the true picture of life with Emma.  They don't see how our family is just like any other family in our own house when the door closes.  They don't see how Emma acts like a typical 3 year old - using her crawler to get around and into her toys, watching the cartoons on the couch with her sister, playing hide and seek and giggling all the time giving away where she is hiding, building forts and laughing heartily while she is in them, looking at everything her sister is doing and trying her best to imitate her, moving her feet in her gait trainer trying to walk to her destination, using her iPad to sometimes give silly responses to our questions while she gives us a mischievous grin and laughs before she decides to give us the right response.  You see, the truth is that at home, behind closed doors, is when real magic unfolds.  

So now I think I have my response to the one liner that I hear all too often.  I will say, that I am truly lucky that God thinks I can handle this much happiness.  If only everyone was as lucky.