Claire loves falling asleep cuddled in bed with Julie … but this is sometimes dangerous! Julie – our quiet “good” child for so long – has started to tease her sister, as all big sisters eventually do. Two nights ago a fight erupted because Julie kept sneaking her hand up to pull Claire’s hair. I imagine she didn’t realize I could see the look of concentration and purpose on her face every time she reached up … but even if I didn’t I would have noticed the slight upward tilt to the corner of her mouth and the cringe of expectation before Claire’s yell. I sometimes sigh at the loss of peace, the sight of teary blue eyes and Claire’s quivering lips … and then I turn and see Julie’s big brown eyes staring without seeing much, her head turned to make optimal use of her unique style of hearing, a little smile on the corner of her mouth as if to say, “Look what I accomplished today!”

While Claire was still in the Pediatric Neonatal Intensive Care Unit, we visited her every day with no concept of emerging sibling issues.  Julie held little Claire, grinned in delight every time she cried, and helped to bathe her.  When we left, leaving Claire in PICU for yet another day, we took Julie home as the Princess of the Castle.  After signing Claire out of  PICU a month later, I set up the house in the most logical way I could.  I wanted to cope well, and I also wanted to “include” Julie as much as possible in the experience.  Mistakenly, I assumed that Julie was as excited about the new baby coming home as I was, and I modified the environment to maximize Julie’s “help”  with the baby.

When bathing Claire, I used a gardening tray (brand new)  so that eight year old Julie could reach in and assist me.  Claire was so tiny – only four pounds upon discharge – and we went about our task with great care.  Julie stood in her hartwalker and “helped” to bathe Claire.  My heart melted to see my two girls finally together at home.   I thought that the experience was wonderful!  Halfway into the endeavor I noticed a strange look on Claire’s face that I couldn’t fathom.  She wasn’t crying, so it took me a moment to notice that Julie was determinedly biting Claire’s toe.  By the time I separated the two, Claire was now crying, Julie was reeling in shock that I had yelled at her (I wonder if it was the first time I had ever yelled at her?), and the little digit in question was rapidly turning purple and blue.  The toe-biting moment was my first anticipation of a future that was rapidly evolving around me.

Claire grew up, of course, and soon perpetrated her revenge.  The first issue emerged (pardon the pun) when Claire’s teeth popped into the world.  Claire felt a need to test her newly sprouted chompers on everything, including Julie’s arm.  To be really, really honest, I’m sure it was tempting!  Julie provided lots of opportunities whereby she modelled this behavior as she loves to bite her right forearm in a really dramatic way when she is angry.  I have seen this many times with kids who have multiple sensory issues, or kids with autism.  Typically, children who bite themselves may be experiencing frustration,  pain, anger, lack of sensory input, or sensory overload.  I have never prevented Julie from biting herself, as I feel it’s important for me to know when she is needing help or input of any kind.  I see this as my signal that I need to help Julie in some way, as she is feeling desperate.  In general, I am able to help Julie by alleviating her pain, removing her boredom, taking her out of her wheelchair, helping her to the bathroom, feeding her, or putting on her favorite show.  Now that Julie is older, she has gained more control over her world, and this behavior is less frequent.  However, when Claire was little, Julie’s biting behavior increased.  Claire found this fascinating, and decided she wanted in on the fun.  I can still picture the look of chagrin on Julie’s face when she bent down to bite her arm … and Claire beat her to it!  The next few months were particularly tough, as Claire tried to sneak bites onto Julie’s arms whenever I wasn’t looking, making Julie even more angry.

In recent years, I am only accosted by sibling rivalry about once every week on average.  However, the tide has changed direction once again.  Gone are years two to four when Claire bit Julie, pulled her hair, or “assisted” her off the couch where I would find her lying in a heap on the floor.  Instead, I will be driving along in our wheelchair converted mini-van, my two dulcet darlings safely bopping behind me to the sound of the radio, when a screech will intersect the silence.  “M-O-O-O-M!!!!!” Claire will wail.  “Julie’s pulling my hair!!!”  As I glance quickly into my rearview mirror the first item on display is the “guilty as charged” look on Julie’s face, and the second is the moment I see Julie break into a huge, wide grin and then a giggle.

Julie’s pediatrician says that Claire’s yell following Julie’s behavior may create excitement, reinforcing Julie to do this again.  I’ve considered this from every angle and I think that there are other factors we cannot ignore.  Consider this:  The first time I caught Julie in the act I scolded her thoroughly … to her delight!  When I reached the part where I told her she had been naughty she just glowed.  I suddenly realized that Julie was pleased to be considered naughty.  To her, this was a novelty.  Other children were naughty … but this was something Julie had never had a chance to be.  Yes, she has had annoying behaviors over the years, yelled at our music, and kept us awake at night, but there has always been an explanation that has centered on her disabilities or her medical issues.  For the first time though, Julie was choosing to be naughty, and it was mainly because she now had a sister!  Julie’s sister is the target of her naughtiness, but she is also the target of her love.  Without her, she wouldn’t have had a chance to emerge as the person she’s become.

I was lucky to have three amazing sisters.  We fought like crazy during our childhood, but we were all very close.  Likewise, Julie has the greatest possible gift in Claire.  Her love, kindness, laughter, and chatter have brought Julie out of a cloud-land into the sun.  In the same way, Claire glows when Julie says “yes,” allowing Claire to sit on her lap in her wheelchair when they’re out shopping.  Claire cuddles with Julie at night, helps her to pick out clothes, introduces her to her friends with a smile, and has even designated one of her prettiest  brown-eyed dolls as “deafblind.”

Claire and Julie also use their sister-power to conspire against me, having realized long ago that two against one tips the scales.

“Julie wants to get french fries, mommy,” Claire will announce as we drive home from school.

“Hmmm, really?” I say with an uplifted eyebrow.

“Julie, say yes if you want mommy to get french fries?” Claire will ask.

Julie will immediately nod yes and give a little kick with her feet to emphasize her enthusiasm.  “You see!” Claire will announce, with a big smile.  “She said yes and we should listen to her!”

I’m sure the tide will turn back in my favour at some point.  For now, though, I’m lost!  I’m the odd one out against the dreadful duo, and I have no option but to bide my time until Claire has kids of her own.  The signs are all there ….

“Mommy,” Claire declared.  “I’m going to have two children you know!  I have those things in my eyes!”

“What things?” I asked confusedly.

“You know!  Those things!  I have two of them!” she said.

“Which things?”

“Remember ….  daddy used to have them!”

“Oh……” I said, as the light dawned.  “Twinkles!  You have twinkles!”

“Yes,” she said.  “I have two twinkles, so I’m going to have two children!”

Later I asked Claire what she hoped to have:  Boys or girls?  “I don’t know,” she said simply.  “But I hope I have two girls – just like you!”  I felt so amazed at one of those mother-daughter moments, and smiled to myself.  Oh and mommy,” she added, glancing at her innocent looking sister.  “Please hold my icecream so Julie doesn’t get it!”

My amazing sisters: "Anastasia," "Grizelda", me, and "Cinderella"

“I looked at him and told him he wasn’t the real Santa,” Claire stated as we were on our way to the mall this Christmas.

“Oh?” I said.  “What gave him away?”

“The belt, of course!” she retorted.  “The real Santa wouldn’t wear a belt like that!”

“Of course,” I replied, trying not to laugh.  Julie, who still believes in Santa, giggled.

Claire was so excited about Santa that she helped us to have a really special Christmas this year.  On a personal level, AJ and I were really blue – it was our third Christmas out of our house.  AJ put up lights, nevertheless, and we managed to have some good family time together.  Once we had bought the presents, attended the school concerts, and baked all the cookies, Claire and AJ took the trailer out to a Christmas tree farm and waded through a stream to find the “perfect” tree.  The girls secretly made paintings for each others bedrooms in the hope that we’d soon be back in our house – Claire made a vibrant 3D butterfly on a canvas for Julie so that she could “see” it, and Julie made a 3D cupcake on a canvas for Claire in pinks and pale yellows.  Given her poor motor skills, it had taken her weeks to make.  It was quite wonderful to see the girls’ excitement as they gave each other their gifts!

Soon after Christmas Julie became violently ill.  She had been ill with a fever off and on for several days in December, and we had taken her into clinics.  When I asked her what was wrong, using her PODD picture communication symbols, she responded and told us that her abdomen hurt.  This seemed to make sense as she subsequently tested positive for a UTI.  We started her on a course of antibiotics, and she improved for a few days.

Just after Christmas the plot thickened as AJ and Claire came down with a norovirus.  Claire threw up in style … after vomiting for about the 18th time she looked up from the bathroom floor where she sat on her knees, hugging the toilet and trying to tell me about the little children, in red dresses, whom she had seen running through the room.  I was quite horrified and realized that she had become dehydrated very quickly.  After I bullied her into drinking some electrolytes, she improved a great deal.

Terrified that Julie would become ill, I had been washing my hands obsessively.  I had also been taking ginger at the smallest sign of nausea.  So far, however, Julie and I seemed to have escaped this nasty virus.  As AJ and Claire improved, we started to think about Claire’s birthday which was rapidly approaching before the year-end.  Julie, however, gradually started to become more ill.  Eventually, she spent two nights in a row crying incessantly.

“I don’t mind if she cries all day on my birthday,” Claire told me, as she tried to help with Julie.  I recognized that she somehow sensed that I might be worrying about her, and my heart reached out to this child of mine who is so intuitive and caring.  Sure enough, Julie spent the night before Claire’s birthday writhing in pain, screaming, and vomiting.  She was admitted into hospital on Claire’s birthday.  Too busy to help Claire open her gifts, I gave her a “special” gift as we loaded Julie into the van.  “I knew how much you wanted her,” I said as she unwrapped the little doll.  Claire looked up with shining eyes and the smile on her face was like a ray of sunshine.  “She’ll be able to cuddle with you tonight when I’m at the hospital with Julie,” I said.  “She’s your special doll.  When you look at her, you’ll know that we love you very much!”

Julie was admitted into isolation where she continued to vomit and scream for what seemed like days.  At one point her platelets fell to 33,000 (normal is 180,000 to 440,000) and we worried that they would drop further and that she would have to go to the mainland for a transfusion.  When Julie’s platelets rose slightly we felt relieved.  However, she continued to scream through the nights and was obviously experiencing a great deal of pain.  Despite the painkillers, Julie screeched and screamed for hours on end, eventually going hoarse after a few days.  The pediatrician looking after her ran many tests, and soon discovered that her pancreatic enzymes were high.  “This is like having a third-degree burn on the inside,” a friend of mine who is a nurse commented.

Initially, we worried that Julie would be transferred to the Children’s Hospital in our province.  “She’s too complicated for this,” the surgeon at our hospital told me.  “We think she’s going to need surgery in Toronto.”  My heart sank at this news.  It was devastating enough that Julie was in so much pain, but a trip to the other side of Canada (our third trip to Sick Kids!) would not be easy for us financially or emotionally.

AJ and Claire relieved me at the hospital so that I could go home and do some laundry (it’s amazing to see how Claire can bring a smile to Julie’s face every time she walks into a hospital room and says “Hi Julie!”).  I took Claire home and tucked her into bed, finished my laundry, took a much-needed bath, dyed my hair (yes, it’s a great coping mechanism), and packed my bags.  I had no idea how long Jenna would be in Toronto so I wanted to prepare myself for any possibility.  “Please pray for Julie,” I wrote to friends and family.  Then I returned to the hospital to relieve AJ and spend another uncomfortable night on the parent couch in Julie’s room.

The following day Julie had an MRI of her abdomen and – voila! – her pancreas didn’t show any inflammation or lesions.  When she had her bloodwork, her amylase had returned to normal, and her lipase – although still “high” – had started to come down.  Determined to leave hospital as quickly as possible, Julie decided to take matters into her own hands and (for the second time during that hospital visit) tore out her IV.  I didn’t notice Julie’s triumphant moment as I was doggedly pursuing an errant word in my “101 Easy Crossword Puzzles.”  When I eventually glanced up I saw the young lady with the low platelets looking back at me while clutching a blood-soaked nightie and grinning from ear to ear!

When Julie was discharged from hospital six days after her admission, she had lost a lot of weight.  Not able to keep food down for over seven days, Julie had been subsisting mainly on IV fluid and was now eating only sparingly.  Cognizant that the battle ahead of us was more psychological than mental, I took her into school the next day after checking with the pediatrician.  Until this year, Julie’s school program has been primarily at home due to her immunity issues.  This year, however, we have a “split” program whereby she can attend a few classes at a local private school as she is able, depending on her health.  Seeing her face when she entered the resource room after her week-long ordeal in hospital almost made me cry.  “Hi Julie” and “Poor Julie” resounded from the few people who were present.  I felt a sense of validation from Julie – that she had the strength of her peers, and that she somehow “belonged” to a group.  After feeding her a muffin in this supportive atmosphere I took Julie home where she slept for the rest of the day.  It was over a week until she had the strength to return to school for a half day, and the next few weeks were brutal.  In too much pain to sleep for more than 90 minutes at a time, Julie was up a good part of each night crying despite a heavy dose of various sleeping medications and painkillers.  In addition, she wasn’t able to stay awake for more than four hours at a time during the day before starting to cry and needing to sleep.

Several weeks later, I am glad to report that Julie’s lipase has now returned to normal and that she is a happy teenager once more.  I don’t think I’ve been so stressed for so long without knowing why Julie was in pain, and it has taken me weeks to recover.  I’ve not cried more than a few times in many, many years, but last week I cried twice, surprising even myself.  On neither occasion did the event warrant the tears, yet I found that in the second instance I cried without stopping, scaring even myself.  Perhaps our bodies, with a wisdom of their own, know what we need.

AJ and little Claire, each having battled the Norovirus in their own way, eventually regained their strength.  Claire still has dark circles under her eyes, but is happy and content now that she is back at school.  We eventually helped Claire open her birthday gifts and we plan to have a party for her soon.  I must admit I felt so sorry for both my children during this sad time:  For poor Julie who was in so much pain and throwing up … and for little Claire who so generously ventured, “I don’t mind if Julie screams all day on my birthday.”

Tonight, as I tucked Julie into bed and started to gather laundry, Claire looked up from arranging her blankets and dolls

“If I ran away from home,” she said, “I would look at all the pictures on my cell phone and cry.”

I stopped picking up dirty clothes, not sure if I had heard correctly.  All sorts of ideas rushed through my brain as I considered whether or not my six-year-old was wildly unhappy living in our somewhat chaotic family.

“Well … do you think you’re going to run away from home?” I asked tentatively.

“Of course not!”

“Why?” I asked curiously

“Silly!  Because I don’t have a cell phone of course!” she responded, surprised by my lack of logic.

I stopped to consider, tucking this piece of useful information into the back of my brain for future years when a certain young person asks me to buy them a cell-phone package.

“Well …” I queried.  “Would you run away from home if you did have a cell phone?”

Claire stopped to consider for a moment.  “No,” she said simply.

“Do you get upset with Julie being ill sometimes?” I enquired.  “Sad, maybe?”

“Mom,” she replied.  “It’s ok.”

Claire looked at me, and she looked at Julie.  “It’s ok, mom,” she said and then she smiled …”Come and tuck me into bed!   I need a tent … and my doll goes there …. and I need some water …. please brush my teeth for me!”

As I finished my chores and thanked God for my lovely children, I realized that the true gift of my life is the joy of loving and being loved.  I don’t believe there’s a greater gift possible on this planet – I think that quite possibly I am the richest woman alive!

Johnny moved into our house when Claire was only about a year and a half old. I didn’t realize who he was at first, but Claire recognized him right away. As my hand moved, spiderlike, across the dining room table Claire jumped and screamed. As I moved my hand back and forth, baby Claire mimicked those movements with her body. Thus Johnny (his name was changed to protect his identity) was born.

Growing and developing along with Claire, Johnny developed many talents over the years.  Now that he is five years old, singing and dancing are – apparently – his greatest gifts.  He’s a pro at square dancing – albeit a bit awkwardly as he has four feet instead of two.  Johnny is a good houseguest and doesn’t seem to eat much even when forcefed by Claire.  He also seems to get along smashingly with everyone.  Over the years, Claire has discovered more about Johnny’s family.  She now loves him the way he is … but almost turned him into a girl about a year ago during her “everything pink” phase.  She then created a sister for him so that he would have a positive female influence in his life.

When Claire was a toddler, she used to chat non-stop to Johnny in long gab sessions that seemed to last for thirty minutes or more.  She even introduced him to several of her friends and some of Julie’s teaching staff.  Johnny was her best buddy in a world in which her only constant playmate was a sister who couldn’t talk.  Claire told Johnny everything, and used to chide him for not coming to play more often.  At night … when I had difficulty settling her for bed …. Johnny used to crawl up to her nose for a cuddle and a chat.  No matter how many dishes I had done, or how chapped my hands were – Claire still thought of my hand as her “spider-like friend.”

“Hi Claire!  What’s going on?” Johnny would say.

“Oh hi Johnny!  I’m just going to bed, ” she would answer.  “Where did you come from?”

“I was just out for a walk and snuck past your mom.  That’s your mom, isn’t it?”

“Yes,” she would nod enthusiastically.  “Would you like to meet her?”

At this point my hand would have to crawl over and make polite conversation with myself.  Although it was an odd feeling, I could usually pull this off with aplomb.

“What’s your mom like Johnny?” asked Claire later

“She’s nice.  And yours?”

“I think she’s not thinking about my feelings tonight.  She just doesn’t understand me!”

“Why not?”

“Well … she’s being very grumpy.  Sometimes she’s grumpy you know!”

“My mom gets grumpy too, “Johnny said with a heartfelt sigh.

“She wants me to go to bed …. but I’m just NOT ready!  Isn’t that mean!”

Johnny, of course, agrees with most things that Claire says.  He is her true friend, and tries to bring a unique perspective to the conversation.  Although he sometimes replies in a way that may help Claire to gain some clarity, his “voice” and way of thinking are uniquely his own rather than mine.

Claire still loves Johnny despite the years that have now passed.  As she is now a more wordly-wise five year old, the conversation is more likely to sound like this ….

“Johnny, I don’t like spiders, but I think you really ARE a spider!”

“I’m NOT a spider!  I’m not even a bug!”

“Yes you are!”

“But I don’t have the right number of legs!  I only have FOUR legs!”

“Well … I see more than four!”

(Snort from Johnny)

“And if you don’t think you’re a bug I’ll, I’ll ….. SQUISH you!”

Personally, I love being able to “listen in” on Claire’s chats with Johnny.  The conversations are unique, and the topics are always appealing.  Listening to Claire talk with Johnny gives me a lot of perspective and insight into how Claire thinks …. and I also find that being “Johnny” is a lot of fun.  Being Johnny is so much fun, actually, that I would be disappointed if he were to disappear.

I have often wondered how long Claire will welcome Johnny.  In the back of my mind I imagine that although she knows Johnny’s true identity, she finds a comfort in his existence just as I do.  For me, Johnny represents childhood.  When my hand is “Johnny” I am playing and I am once again a child.  At the same time, I am a mother and I am able to talk to Claire about “life” without having to put on a mother’s “voice.”  In the same way, I think Claire loves being able to chat to “Johnny” about things she would love to chat to me about …. but doesn’t know how.  Our conversations together are warm, open, respectful … and so much fun.  I know that I am going to have to bid adieu to Johnny one day …. but hope that he can live with us for a few more years.  Although Claire still enjoys talking with Johnny, she doesn’t ask for him as often.

“Johnny … I have to tell you something,” Claire whispered tonight.

“Yes?”

“I don’t want you to be mad at me …. but there’s another boy I like, and he is also called “Johnny.”   And … actually … I like him more than you.”

She looked at Johnny carefully and frowned slightly.

“I’m very sorry … I still like you, you know!  You’re still my friend.”

I resisted a heartfelt sigh as I felt my daughter’s childhood slipping through my fingers.

“Don’t worry Claire,” Johnny whispered.  “I will always be here so you can talk to me!    I will be here when you’re big.   I will even be here when you’re older.  You can even phone me when you’re in university and we can talk.  You just have to say, “Hi, is Johnny there?”

“Thanks, Johnny,” she sighed.  “Now will you please do a square dance on my back so I can fall asleep!”

 

I’m the only mom I know whose child licked – actually licked! - a hospital floor.  I admit to being one of these “in control” women who – smugly holding Julie’s hand and occasionally looking up from the waiting room magazine – would cringe at the blatant parental neglect surrounding me.  You see them and grimace … moms who allow their toddlers to gabe and gimble all over bacteria-infested lino.  Babies who gleefully crawl through the muck, leaving a satin shine in their wake that is oddly correlated with the primeval grunge on their scraped knees.  “I would never, EVER,” I thought, “allow a child of mine to do that!”

Two weeks ago I blearily crawled out of bed at 4:30 am to take Julie to her appointment at the main children’s hospital in our province.  Claire – for the first time – chose to remain behind and go to school.  It was both joyful and disconcerting to see her newly gained independence, and we missed her chatter.  Even Julie missed her.  Instead of Claire, Granny-Get-your-Gun came along.  Granny GG was a great help, and tried her best to help me calm Julie down for the outward journey.  Sadly, Julie was really upset at going to the hospital, and decided to cry almost non-stop for an hour and a half.  She mellowed once we hit the morning traffic in the city, lulled by the motion of the vehicle and the drone of the radio.

When we arrived we had some spare time and we wandered over to the cafeteria as I was making an “experience video” for Julie.  For those of you who are wondering, an experience video is an “Despite-all-your-bad-experiences-Julie-you-love-being-at-the-hospital-just-look-at-the-happy-place-with-all-the-crying-and-bad-parts-edited-out-and-lots-of-smiling-people” movie.  In short, it is a coping strategy for kids who are deaf-blind, and the practiced familiarity helps them to feel comfort and control in a stressful situation.  (I am happy to say that once I had extensively edited the movie it worked like a charm for her next hospital trip).

Wending our way through the hospital corridors en-route to a well-deserved cup of coffee, I gasped.  Memories flooded through my brain and I remembered the moment as if it were yesterday.  In this exact hospital wing, in this exact hospital corridor, I had forever lost my claim to Perfect Parenthood.  “There’s the spot!” I told Granny GG in a hushed whisper.  “That’s the spot – right there! – where Claire licked the floor!”

I saw Granny GG’s eyes widen … which gave me a chance to engage in a long overdue verbal catharsis and to bemoan the fact that my child psychology courses did not, in fact, have a chapter on precocious toddlers and all their possible get-the-better-of-mom behaviors when away from home.  On that particularly fateful historic trip I had brought the two kids to the children’s hospital by myself as A.J. had to work the next day.  In retrospect, I realize I should have known better.  At the time, though, I imagined that I was in complete control of my life and could do anything!  With this in mind, I settled the kids down in the lodging for the night … and was unable to sleep.  Nagging doubts of unknown magnitude coursed through my brain.  “How am I ever going to negotiate my way through the hospital tomorrow?” I thought grimly as I pictured trying to push the wheelchair, wheel the commode behind me, and steer a bright-eyed toddler to all her sister’s appointments for the day.

The week before this hospital trip in which I discovered the true nature of toddlers, I was struck with an enlightening thought and had purchased a harness for Claire.  Although I had previously laughed (in my pre-kid days) when I saw other parents leading little people around in this fashion, I now realized that this method of restraint could solve my problem:  Curious Claire never stayed by my side and didn’t remain in any spot for more than 0.5 seconds.  The wheelchair, on the other hand, took a lot longer to negotiate through narrow department store aisles.  “If I’m really careful with how I introduce it to her,” I thought with a smirk, “she’ll view the harness in a really positive light.  This could, in fact, change our lives.“  I then proceeded to have a somewhat restful sleep, punctuated by Julie waking up every few hours as usual.

Heartened by my clever strategy, I talked to Claire about the harness the next day, and showed her how much fun it would be.  I then prepared to take my two kids, wheelchair, commode, and naughty toddler from the family housing unit to the day’s appointments.  Claire narrowed her baby-blue eyes at me and laughed.  “Oh good!” I thought, “she likes it.”  As soon as I had buckled up the harness, however, I realized that Claire had no intention whatsoever of  being “led around like a puppy!”

As the day rolled on and we ticked off appointment after appointment, Claire started to become more confident in her quest.  In the happy light of the bright morning I had perceived that she didn’t want to wear the harness and that I would merely have to positively encourage her in order to see good results.  I soon realized with chagrin that Claire had embarked on a campaign of her own and had a higher goal in mind.  She had decided to embark on a life-long quest for independence … and her first move toward this goal was total and permanent escape from leash-arrest by all means available to her.

I took the harness off during appointments, which enabled Claire to get the public on her side.  The first strategy Claire used was to make eye contact with other parents.  She knew, even at an early age, that blinking her eyes would get the attention she needed.  As other children and parents oohed and aahed at her toothy grins, she decided to take this a step further.  When we left our final appointment of the morning and made our way down to the cafeteria, she made her move in the middle of a busy hospital corridor and sat down.  This strategy ensured that I, too, would have to halt.  Feeling the tension on the line, I realized Claire was going nowhere.  “No!”  I said as Claire waited and smiled at all the medical staff rushing to grab a bite to eat.  “I’m not taking it off!” I reiterated firmly.  “Come along!”

This strategy would have worked at any point in my career with almost any other toddler.  Toddler Claire, however, was different.  Some people call her stubborn … others call her intense and active … yet others call her bright and determined.  Whatever the nomenclature, this little girl was going nowhere!  Realizing, somewhat belatedly, that I would have to “win” this war, I hunkered down for battle.  I tried to look nonchalantly back at Claire in a way that – I hoped – would show that I did not mean to reinforce this behavior by giving her negative attention.  “At some point,” I thought, “she will tire of this game.”  Claire looked at me thoughtfully.  Even at this young age she was beginning to absorb the fact that we were more “germ conscious” than the average family due to Julie’s immunity.  Just that morning, the cardiologist had reiterated to me, “For her sister’s sake, I hope that you teach her to wash her hands all the time!”  As I looked down at Claire sitting immobile on that dirty hospital corridor I noticed a familiar glint in her eyes.  Making up her mind, she suddenly lay down on the floor.  “Naughty little thing,” I thought, and tried to show no interest.  “She’ll tire of it soon enough!”  Seeing that her actions had provoked no response from me, Claire decided to make snow angels in the muck.  Once again, I ignored her behavior.  “Wow,” I thought.  “I didn’t know toddlers were so scheming …. but, I’m doing really well …They would be proud of me in Cognitive Psychology!”  At that point Claire’s eyes widened and I thought I saw a knowing smirk.  She then turned and lay face down on the floor.  Keeping her cheek plastered to the grimy lino, she looked up at me occasionally to see what I would do.  All my senses started to shriek, but I kept my cool.  “I just can’t let a toddler win!” I thought as I stood there next to the wheelchair.  Despite myself, a small part of my brain had started to cheer her on and I was secretly proud to see Claire show perception and resourcefulness at a young age.  I’m sure my face reflected my thoughts, as Claire decided to take matters into the no-fly zone.  She looked up at me with the most innocent baby-blue eyes … and then stuck out her tongue in the direction of the dirt.  When I didn’t respond … she turned … and licked the floor!

Many years later, as I regaled Grandma GG with the sad, sordid tale in which I eventually bundled Claire under my arm like a sack of potatoes in order to remove her from harm’s way, I realized with clarity that we can all be duped by the seeming innocence of toothy grins and happy smiles.  I am happy to say that Claire survived the occasion.  Not only did she not become ill, but she also didn’t make any of us ill.  Claire, in turn, is happy to say that I never again put a harness on her.

“You’re the best mom I ever had!” Claire announced to me today!  “And I just love you!”

“I love you too, Claire,” I laughed,  feeling a glow inside and wondering how on earth I was lucky enough to have such wonderful kids.  Julie wiggled her feet and giggled.   “I love you, too, Julie!” I added as she grinned.

I LOVE moments like these – it makes it all so worth it!  I see such a miracle in my life when the former “dot on the ultrasound,” follows me up and down the store aisles, bouncing enthusiastically as she suggests which “back to school” clothes would look “best” on her.  Not to be outdone,  Julie started making some choices of her own this year, and is gradually becoming her “own person” – a huge accomplishment given the extent of her disabilities.

Julie enjoying the outdoors

This summer, our team managed to teach Julie how to say, “yes” or “no” through the use of “talking picture frames.”  About the size of my palm, they have a button on the top that may be pressed to play back a recorded message – we chose to record “yes” on one frame, and “no” on the other frame.  Our goal was to get Julie to nod her head for “yes” and to shake her head for “no.”  As Julie tends to push her head to the right when she doesn’t want to eat something (ie., this is yucky, I’m going to move my face away from you!), we used this movement as a trigger for her cheek to touch the “no” frame.  At the same time, we pressed the button so that she could hear the recorded “no” (courtesy of Claire!).  I am happy to report that  Julie soon learned to push her head to the right in order to say “no” in various situations.  As well as learning to say, “no” we simultaneously taught Julie how to say, “yes.”  This time, however, we pressed the “yes” frame underneath her chin while pressing the recorded “yes.”

Julie VERY quickly learned to say, “yes” and “no” with her head, and so we started to help her refine these skills.  Instead of using talking switches, we placed a hand in each location – just next to her cheek or chin but not touching until she initiated a movement of her own – and said, “yes” or “no” depending on her head movements.

So …. what does a non-verbal child choose when she is able to “talk” for the first time in thirteen years.  Here goes:  Tacos instead of Chicken Nuggets, Rootbeer (not sure if she appreciated her choice) instead of coke, five cartons of applesauce in a row (who knew she was an applesauce fiend!), choosing a GREEN waterbottle instead of a red (I would have just bought her the red), choosing to buy popcorn, and choosing to wear makeup (and grinning about it every time!).  For the first time Julie has a reliable way to say “yes” and “no” and she knows we have to listen.  Although she does not understand all the phrases we are using – her brain is still learning to interpret many words – she understands the concept that she is able to make choices (something we worked on from a young age).  She now has a say, and is appreciating the power of her vote.

Claire has been our wonderful helper this summer, and is as enthusiastic about giving Julie choices as we are.  I usually just sit back and smile, but occasionally I have to laugh.  Claire asks things like, “Do you love mommy?” and “Do you love daddy?”   However, she has recently started to ask Julie questions such as, “Do you think mommy was silly?” (Enthusiastic “yes” and grin from Julie) and “Do you think we should go to McDonald’s?” (Obviously Claire has learned the power of group decision making at a very early age!).

Claire is also very good at directing others.  Today Princess Shimmer came over to work with Julie.  She gave Julie some choices, and  Julie said, “no.”

“You just have to ask her again, then!,” Claire announced, chagrined because her choice hadn’t been favoured.  Quickly putting her hands next to Julie’s face before we could intervene, Claire repeated the choices for Julie.  Giving up, Julie nodded “yes,” and the rest is history.  Later Claire confided in me, “If she says, “no” you should ask her again – and then again!”  I cringed to see poor Julie being browbeaten into submission, but then I “got it.”  Claire wasn’t forcing Julie to do the activity.  Instead, she was honoring  Julie’s ability to make decisions and waiting for Julie to change her mind – albeit with a teensy bit of persuasion!

Despite the lack of sleep this summer (Julie has been quite ill lately), the seemingly constant housework, and ensuring that there are no potatoes growing in anyone’s ears, I can truthfully say that I’ve been happy.  Not only have my kids both matured, Julie’s ability to say, “yes” and “no” was one of the highlights of the school break and has changed the tangent of her life forever.  As we are assisting Julie to use the PODD communication system, her emerging skills have provided her with a stable foundation for communication.

Claire has also emerged as a hero these last few months.  Sweet and wonderful to start with, she has become more independent while continuing to “help” everyone she can.  She has a gift of bringing out the best in those around her, and makes Julie laugh.  You may have seen us this summer – driving by in our mini-van, the sound of a five year old singing Justin Bieber songs to make her sister smile – with the windows rolled down so she can reach as wide an audience as possible!

Summer Fun

Today started like any other day, but then Claire made a decision to change the world … and I realized what an extraordinary day it had become.  I know I’m biased … but I am so proud of Claire tonight!  I gave her a big hug at bedtime and told her how much I love her!  It was one of those “moments” that I will always remember.

Thinking today was going to be a typical day, I took Julie for a follow up appointment with her neurologist.  Julie surprised us two weeks ago with some petit mal and absence seizures and we wanted to review her medications.  Julie was furious with us for taking her to yet another “doctor” – she groaned and complained so much that her deaf-blind intervenor – nicknamed  Princess Shimmer by the girls -  had to walk outside with her.  (Now that she’s a “teenager” Julie is definitely putting a lot more energy into letting us know when we’ve “missed it”).  Claire decided to stay in the waiting room and play with all the other kids, which gave me a good chance for a chat with the neurologist.

The doctor explained to me that seizures can sometimes be triggered by stress on the body from any illness, including an arrythmia.  In Julie’s case, we have spent the past three months weaning her off her seizure medication – quite successfully – but I worried that we had done this too quickly.  As we started to review the past two weeks, however, I noted that Julie had recently had a nasty ear infection.  In addition, she had been injected with Botox in her leg muscles to combat spasticity and make it easier to position her for sitting and dressing.  The neurologist thought that Julie’s recent illness could have “stressed” Julie’s body.  Rather than putting Julie back on seizure medication right away, the neurologist asked us to try to keep her at this medication-free “baseline” level for at least two months before we decide what to do next.  I was glad to hear this – Julie seems so much happier, “brighter”, and more alert now that she is no longer taking seizure medication.

Once I had rounded everyone up and we had left the office, we stopped to buy flowers (we have a special purpose for them), and then drove to the ferry terminal for our next errand.  We had forgotten Julie’s wheelchair tray on the ferry when she made a trip to see her cardiologist on the mainland last week.  Tray recovered, we made one more stop – thanks for the tea, mom! – and then headed home.

We were at a traffic light when we saw a young lady standing on the median holding a placard.  She was exceptionally thin, wore ragged shorts with long socks and had a ponytail.  I saw the young lady walk past, and Claire instantly asked me what her sign said.  It said, “I’m too Proud to Prostitute.”  I didn’t think I could explain that to a five-year old so I settled on “I think it says that she needs money.”

Claire watched the woman and instantly rolled down the car window.  “HI!,” she yelled, excitedly waving her hands in circles.  Julie started to giggle.  Speechless, I turned around to look at Claire in her car seat who was trying her best to get the young lady’s attention.  “I think I have some money!” Claire happily told me.  She quickly rummaged in the drink holders on her booster chair, and found her coins.  When the young lady came back toward the car, Claire was ecstatic.  She smiled at her and handed her the money.  I don’t know how much it was – a dollar … or perhaps just a few pennies … but it “belonged” to Claire and she doesn’t have a lot of money at her disposal.  She didn’t think about what the money would be used for – she just gave it to the young lady in ragged shorts.  She saw a need … and she responded!

The traffic light turned green and I prepared to drive on.  As the woman walked away, Claire smiled at her and she smiled back.  “Bye!” Claire shouted, waving her hands.  I drove on, feeling a prickly feeling behind my eyes and feeling ashamed of my cynicism.  “Mommy!” said Claire, as I swallowed hard.  “Mommy …. she was SO pretty!  Did you see how beautiful she was!”

I found out first-hand the past two weeks that while it’s easy to post when things are going well – it’s darn difficult when life “catches up with ya!” The kids have been ill, we’ve gone through some personal legal trauma, and – honestly – we really could do with that holiday in the Bahamas right around now.

Julie doing schoolwork at home, age nine

Just to make it interesting and add some variety to my life, each of my kids had a different illness last week.  Julie had an ear infection -which I think she’d been brewing for some time now – and which announced itself with such drama that I actually thought she had burst her ear drum.  Not likely, according to the ENT who examined her.  Apparently it’s just fizzing through the tube which is still – amazingly – in place.  Thank goodness for modern medicine and antibiotics!

Claire, on the other hand, had a fever but no ear infection.  She also had no vomiting, no diarrhea, no pain in the vicinity of her appendix.  No anything that we could point our finger at.  The only symptoms we noticed were that Claire had a headache on the first day and had also spent too much time in the sun.  Convinced it was heat exhaustion we plied her with liquids for two days before realizing it was more likely a mild childhood virus.  As I caught her sneaking a vanilla candy this morning, I think she’s now fully recovered!

On a personal level, we had a dreadful situation with an ex-contractor this week.  Due to renovation issues we’ve been out of our house for a year now.  Our very patient inlaws have been amazing hosts to our family, who showed up as “unexpected guests” for five days … last summer!

Our renovation failed to pass municipal inspection on a number of issues, which has cost our family a great deal of money to fix.  These issues included an entrance hallway which wasn’t built to code and which we now have to rebuild, plumbing installed incorrectly, and electrical which we had to redo. In addition, when the elevator company arrived to install Julie’s lift they found garbage piled up to their waists.  In addition, they were unable to install the lift as the previous contractor had installed the backing incorrectly and the lift may have come crashing down.  AJ and my nephew spent days cleaning up the garbage and then reinstalled the backing to code.  We are so glad we caught this “error,” as it would have been a huge tragedy if Julie or anyone else had been crushed or injured.

Contractor said this area was "ready" for Julie's lift to be installed

During this year AJ and I have tried to be both physically and mentally strong.  We have been lifting Julie into her wheelchair without the aid of a tracklift, bathing her in a small, non-equipped bathroom, and trying our best to carry our thirteen year old up and down a winding staircase several times a day without injuring our backs.  As Julie is now almost my height, I find this very difficult at times.  Julie’s Deaf-blind Intervenors have continued her home-based educational program, and have remained patient and supportive despite our lack of space and equipment.  Claire has suffered nightmares, has mourned the loss of toys residing in our storage unit, and has been exceptionally clingy at times.  As grandma’s house is an older, creaky house, Claire refuses to go into rooms by herself and wants us to accompany her everywhere.  I’m sure she’ll grow out of this, as she doesn’t show these behaviors when we house-sit for my sister.  It is, nevertheless, sad to watch.

We had an opportunity this week to confront the previous contractor who has caused us so much grief.  Unfortunately, the meeting – which was legal in nature – culminated in a “he said-she said” scenario and we were unable to come to a resolution.  Faced with this contractor’s demands and the lien on our house, AJ and I were then faced with a VERY difficult choice.  Despite what we feel this person owed us, and what we felt he had done to our family, we decided to settle and pay him out.  We could have continued to challenge him – take him to court and all that this entails (likely about $75,000 worth of legal bills), or we could put our personal feelings aside for the sake of our children.  In the end, our kids won out.  We swallowed hard – VERY hard – and decided to pay him a large amount of money so we could “get on” with our house and provide a stable home for our children.

All in all, this is one of the most unfortunate things that has ever happened to us.  In retrospect I would like to caution people who are starting renovations to take a lesson from what we’ve learned.  In our case, the contractor came highly recommended by the architect.  However, he took on too many projects at the same time – twenty two houses and an apartment building, to be exact.  We could not have predicted this.  Our fault, though, was in not firing him sooner.  We tend to be “people persons” and always gave him the benefit of the doubt.  We are somewhat naive in the world of business and there was a lot we could have done to protect ourselves.  Although we didn’t know that the work would fail inspection, we should have seen the warning signs when a) he didn’t show up on our agreed-upon date, b) there were always “reasons” why workmen didn’t show up for days at a time, or something couldn’t be done (we should have checked how valid those reasons were),  c) we should have asked for proof of the bills right at the beginning so that we could have caught inconsistencies earlier, d) we should have checked the hours on the bills, and compared these to the actual hours that workmen were on-site with a certain amount of leeway for “picking up supplies” and e) we should have realized that when the contractor told us that “our other project has a deadline” that this was an indication that our own house was not being viewed as a priority.

We are, unfortunately, not alone in our experience.  Yes, we have a child with a serious disability, and it has been exceptionally difficult for our family.  However, this doesn’t meant that the world owes us anything.  Sadly, there are many families across Canada who are going through the same experience.  When we wrote to Holmes on Homes/ Holmes Inspection, the producers wrote back that this year alone around 18,000 people wrote to them with tragic home renovation stories.

The impact of our “home renovation gone wrong” has been so severe on our family.  After our legal meeting with the ex-contractor AJ and I felt completely exhausted both mentally and emotionally.   Our decision to pay him out and “let things go” caused such a strong chain reaction in our physical bodies that we could hardly keep our eyes open.  AJ went to sleep for a few hours and then went outside and started smashing boulders with his pick-axe to try and clear a wheelchair pathway at his parents (yes, he was wearing safety equipment).  I’ve never seen him smash rocks so vigorously!  I had a good cry, and then broke the news to – justly horrified – friends and family.

At the end of it all, we are poorer …. but we are still honest!  The contractor in question may be richer, but showed his character by his actions.  While he counts his money, we have to now remortgage, find the cash to rectify the project and make the corrections so that it will pass inspection.

It may not SEEM like a happy occasion at the moment, but we are laying a foundation of honesty and integrity for our children.  We are demonstrating what we are made of.  As we age and as our children grow up around us, they will always know that we made a difficult decision for their sake.  They will also know that we are honest people and that they can be honest too.  When difficult decisions come up, our actions will have empowered them  – in turn – to make the right decisions.

This morning Claire summed it all up for me – and I felt so amazed to hear the words come out of her mouth … “I can do it mommy,” she said.  “I am a strong person!”  When I heard this, a good deal of my grief melted away.  I now know that this week we sowed seeds into our children’s hearts … in years to come these seeds will bear fruit – fruit of love, kindness, patience, forgiveness … and lots of courage!

Stretching for a jog?

My mother-in-law is out to get me …. the weapon of choice is whipping cream!  Everywhere I look I see the white fluffy stuff.  Just when I think I’m safe she conceals it in the mashed potatoes, surreptitiously arranges it around the homemade butter-crust apple pie so it will “blend in” visually, or hides it under raspberries!  When we moved into the in-laws during our renovation I had no idea that I would be so vulnerable.  I am at the mercy of a master chef who can both delight her audience and knock them out cold with arterial disease in the same minute!  I get it!  It’s really my own fault for enjoying food!   However, my situation is similar to a pullet being raised in a house of corn.  Everywhere I look I see whipping cream … sugar … butter … oh – and did I mention chocolate!

When we first moved in we had a happy arrangement whereby each of us  would cook every second day.  Now, however, I run to the kitchen at top speed at 4:30 pm, throw a pot on the stove, and pretend to be busy.  I hope that by doing this I won’t have to worry about my health as often (I don’t enjoy jogging as much as some people I know) …. but it doesn’t always work.  “Claire looks hungry,” she’ll say.  “Let me just whip up a little dessert!”  Claire, herself, will be nodding her head enthusiastically, bobbing up and down, and chanting, ‘Yes, Yes, Yes!”  What mother can compete with this!

My biggest problem is that I really like food!  It doesn’t have to be fried or baked – a spinach salad with balsamic and cashews will do the trick.  However, MIL is an amazing chef and it shows in everything she does.  The food she presents is so fantastic – really perfect in every way – that it seems a tragedy to turn it down.  Even if I determine to eat a ladylike amount I am lost at the first mouthful.  Sadly, girls aren’t supposed to like food (which is also why I have to occasionally wobble along the waterfront in my runners).  A friend of mine (see Anne’s Dream) summed it up on her Facebook Profile.  She says, “I like eating cookies.  Sleeping and Eating are my hobbies!”  All I can say is, “More power to ya!”  On second thought, maybe she would like to meet my mother-in-law??

Mil and my late granny have quite a few things in common, including “feeding” me.  Mil looks at me and comments, “I don’t know when you ever eat!”  My grandmother, all those years before would look at me with the same soulful look and exclaim, “It’s just a little piece of chocolate!  It’s not going to make you fat!”  Sometimes she’d follow this up with, “Look at me!  I’ve eaten chocolate my whole life and I’m fine!”  As granny was a centegenerian (she lived to be 103) she was being a teensy bit overpersuasive!  We would generally smile and indulge her by eating a nice piece of Belgian chocolate!

Having lost the battle once before in my life I understand there’s no hope for me now!  My best bet is to get up at the crack of dawn and persuade Claire to go for a jog.  Regardless of the physical benefit, this form of torture will at least console my conscience.  There is the remotest possibility, of course, that I come by my love of sweets honestly.  Although Julie is a “savoury” girl, Claire’s eyes light up with delight when we walk past a candy store, and it’s not entirely AJ’s genes I’m sure.  She eyes the colourful fare with longing, and we both find it hard to walk away gracefully.

My granny, herself, was completely addicted to chocolate!  She made regular trips to Belgium to “visit relatives,” and would take along an extra, empty suitcase – “just in case”.  During her stay she would happily fill this suitcase with chocolate to such a degree that she could no longer carry it and had difficulty pulling it along.  Upon her return, I used to stand at airport arrivals and watch this white haired, diminuitive woman walking down the aisle, occasionally peering up in concern at the porter pulling her load of chocolate.  “What’s in this thing?” he would invariably say.  On one occasion the porter joked that granny was about to start a brick factory.

When we arrived home I would stare in fascination and drool as granny opened her suitcase to reveal its chocolatey contents.  She would take out bars labelled with words such as C’ote D’or, Callebaut, Marzipan and Noisettes.  She would then cut the bars into small pieces and sort them in cookie tins.  “The only way to stop children from eating too much candy,” she would state emphatically, “is to feed them chocolate on a regular basis!”  If we didn’t eat enough chocolate, granny would take matters into her own hands.  We were always the envy of the neighbourhood when we opened our lunchkits and found them full of grated black chocolate sandwiches!

I can’t admit to making black chocolate sandwiches for my girls – although I’ll have to try it one day – but I haven’t deprived them of chocolate either.  When I stumbled out of bed this morning, rushing up to make breakfast for the girls, I was joined in the kitchen by Claire.  “Oh mum,” she sighed.  “I really wish you would buy the waffles with chocolate in them!”  A few minutes later she looked up expectantly, “Could we please pour chocolate over them?!”

“I don’t have any chocolate,” I replied with amazement.  “Where am I going to get chocolate from?”

“Well,” she said, dropping her voice to a whisper.  “I think that we could ask nanna – she always has chocolate!”

On that note, I think I will buy a new pair of runners!

Julie drinks well from a straw

In our student days, my idea of a “good meal” was to open up a can of tuna, slap on a dollop of mayo, and eat it directly from the can.  When Julie arrived on the scene I felt as if I had been pushed off a cliff in a hang-glider with no lessons or instructor in sight.  Julie wasn’t easy to feed and mealtimes have never been the same!  Due to congenital heart disease (Tetralogy of Fallot), she was blue most of the time.    She turned a rather alarming shade of purple when I tried to bottle feed her … and no amount of “burping” would rid her lips of that black tinge.  I had heard that she would likely “fail to thrive” due to the heart disease, and I determined to keep her healthy.  I didn’t dare breastfeed my thin and scrawny child as I worried she would lose weight.  It wasn’t much of an issue anyway – Julie had been tubefed for almost two months as any “effort” to drink on her part would result in weight loss.  As she had dropped to one and a half pounds shortly after birth, I was terrified to experiment in any way.  So … the bottles stayed and the breastfeeding went the way of all things past.  To compensate for this choice I made a heroic attempt to sit for hours every day with a breastpump.  This only worked until the Special Care Nursery discharged Julie from hospital … and then I had the shock of looking after her!  She needed special precautions due to a lowered immunity, didn’t sleep much, played at night, and had “colic” at inopportune times.  Eventually, fatigue won out and I returned the breastpump thinking that I “just wasn’t cut out for this!”

Over the years, other mothers have regaled me with similar stories regarding their initial parenting attempts.  In Julie’s case, we loved her dearly … we tried our best … but she was our first child.  She was also the first of our premature babies.  We didn’t have a clue!  We initially managed to keep her growing through increased bottle feeding – we even cut the tip off the nipple so we could slowly pour small amounts of fluid into her mouth.  We were able to increase the volume of Julie’s feeds through this method, but her face would invariably start to turn blue as her heart struggled to compensate.  Although she grew well, she remained smaller than most babies.  When Julie had heart surgery at nine months she still only weighed twelve pounds – but this was almost six times her birth weight and we were proud of our efforts.

Following heart surgery we tried to maintain Julie’s weight – but this was now more difficult due to her increased brain damage and loss of motor skills.  Despite our best efforts, Julie continued to weigh in at the 5th percentile or lower.  I felt that my days were consumed by food – the effort to help Julie grow and the tasks that accompanied this, such as boiling baby bottles!  I bought extra bottles so I didn’t have to boil more than twice a day … but invariably I became distracted!  Most of the baby bottles were inevitably thrown out accompanied by the wail of fire alarms.  Sometimes the gooey blackened mess filled our student lodging with such severe fumes – toxic no doubt! – that I would leave the doors and windows open and take Julie out for a long walk in the fresh air.

I no longer own any large pots from that era in my life – most of them were thrown out due to the melted tar – but I have some good memories to accompany the bad!  My best memory was teaching Julie to drink from a straw – she didn’t have the mouth coordination to drink from a cup and I desperately wanted her be “like other kids.”  Most importantly, though, I determined to never, ever, ever boil another baby bottle for the rest of my life!  To accomplish my goal, I carefully put a straw into a juicebox, maintaining the seal around the straw.  I then put the straw into Julie’s mouth and squeezed gently.  When Julie felt the juice enter her mouth she immediately sucked and swallowed.  I allowed her to do this several times, and then allowed the juice to fall back in the straw by a few millimetres.  Julie sucked a bit harder and was almost instantly rewarded, once again, as I squeezed the juicebox gently.  Over the course of a day or two I was able to gradually lower the level of juice in the straw as Julie became an independent drinker.

As Julie could now drink from a straw it gave us a lot of freedom as a family.  Her simple skill had a huge impact on our lives.  We were able to visit places, travel, and even “forget” to bring supplies.  We knew that a juicebox was only as far away as the local corner store!  Julie’s ability to drink from a straw saved her from being tube fed – and from G-Tube infections.  It also means that she has the joy of tasting liquids.  Julie enjoys soy shakes, hot chocolate, and Iced Soy Frappucinos.  Who knew that a few hours with a juice box would affect her life for years to come!

There’s nice words, bad words and …. cuss words!  When you’re a teenager, it’s really important to have a choice and so I recently discussed this on my blog (see Putting a Sock in It!).

One of my readers, Bronwyn, commented rather succinctly.   I thought her point of view was worth exploring.  She said:

I just discovered your blog tonight and have found it to be extremely enjoyable. I have a severely disabled little sister, have two special needs children and have been involved in special education since I was 16. One job that I have held was as an educational interpreter for the deaf. I wanted to comment on the PODD system and the idea of putting “bad” words in the system for Julie. I so appreciate that you are considering this as you make a very valid point that she should have the full range of language possibilities. The topic reminds me of when I was a young interpreter and faced full on with the Interpreters Code of Ethics. I was interpreting in a third grade class when two of the children in my group began saying (signing) things that were inappropriate for the classroom. It was my job to interpret what they were saying, so I did so reluctantly and with a red face, but I did do it. It was certainly an awkward moment and was one in which the teacher needed to be informed that my role as interpreter was to interpret not censor what the kids in my group were saying. Your situation is a bit different but the point is that children should have access to the full range of language experiences, and in my illustration had I not interpreted what the kids were saying they would not have learned that certain words or language in certain settings bring about certain responses. I encourage you to add the full range of language in Julies PODD system as life as a teenager would not be the same if not for a few cuss words! Sincerely Bronwyn

I think Bronwyn hit the nail on the head – thank you Bronwyn!   I was obviously wearing my “parent” hat, though, when I thought I could come to a compromise with Julie on the words to include.  I recently heard Gayle Porter say that when she took the PODD book apart into sections and gave each section to a group of teens to revise that it came back with a certain word – which shall remain unspoken – added into almost every section of the book!  “That” word is out there – and it’s not fair to pretend it isn’t.  I would likely die if Julie used it – but then if we were all perfect our moms would still be Barbie Blonde!

Gayle’s solution was somewhat unique.  She put the “bad” words into a “sealed” section in the book.  That way, not everyone reading the book would know that the teen using AAC had that kind of word available to her.  It probably also gave the teen the option to not use it because it was “sealed” until needed.  Most importantly, it ensured that grandma didn’t have a heart attack!

At the end of it all – Julie won’t have a communication “book.”  Rather – she will have access to language, and she’ll have our feedback (both positive and negative) to help her to make the right choices.  I think that this is what the whole exercise is all about.  As parents we want to protect our kids – we want them to act a certain way (there’s obviously more pressure on Julie because she’s the eldest and I haven’t been completely worn down yet, lol).  But … I have to raise her the best I can and then leave the choices up to her …….That’s not to say I can’t have my say back!

I look forward to the day when Julie uses her PODD extensively enough that this becomes an issue.