The Grinch Who Stole Nick's Christmas

Nicholas and I are at it again.

I am in clean house-ivity mode, anxious to get things done and put things away.

Nicholas is still in the holiday mode.

He loves to watch the warm, colorful lights on the Christmas tree. He delights in lighting the candles in each window every night. He enjoys living in a house filled with decorations. If it were up to Nicholas, Christmas would never end. Holiday lights and magic would continue throughout the year.

But this month my need to control clutter has escalated. I am starting to notice a trend. It seems that when I receive difficult medical news or another new diagnosis for one of my children, my pathetic need to control "something" in my life goes into overdrive. I go on a cleaning rampage.

Nicholas, seems to instinctively understand this quirky characteristic in his mother, and goes on high alert.

He becomes the Decoration Detective of the House. Throughout the day, he makes his Christmas patrol around the home to ensure his wacky mother has not hijacked any of his holiday cheer. He carefully counts the lights in the windows and the ornaments on the tree, performing a careful inventory inside his little head.

I, on the other hand, have become more like the Grinch, tip-toeing through each room removing the bamboozles, the woozels, the clumtrumpets and trains.

Today, I see Nicholas distracted in the living room, and pounce on my chance to de-Christmas the house.

I hug our life-sized Frosty the Snowman and head up to the attic, quietly climbing the stairs to carefully hide the white plastic man from my adoring young son.

"Mummy, what are you doing?" I hear Nicholas shout from the living room.

"Oh, nothing...." I say and kneel on the steps. I try to become more quiet but bang my head on Frosty's giant mittens instead. Like a bullet fired from a gun, Nicholas climbs the stairs to investigate.

"Not my Frostyyyyyyyy!" he screams and starts to cry.

Fat tears fall from his eyes like rain.

"Mummy, you can't put Frosty awayyyyyyy!" he says as if I am sentencing our chilly friend to a lifetime of hard labor.

"No Mummy, pleeeeease!" he says, and now I too feel like crying.

"Wait Nicholas, I have an idea!" I say and immediately he stops crying. Once again those four little words have saved my life.

"Why don't we put Frosty in your room! That way you can still be near him. He can watch over you when you sleep! What do you think?"

And like a happy switch has flipped on in his brain, he immediately shouts,

"Yeah!"

"Oh Mummy, that's a great idea!" he shouts.

I carry poor, old Frosty back down the stairs and place him at the foot of Nicholas's bed. As I plug him into the light socket, Nick smiles and jumps onto his bed. He lies back and is immediately mesmerized by the cheery face of the watchful snowman. He is happy.

"Nicholas, I am going to put some of the other Christmas things away now." I say delicately to my son.

"OK, Mom," Nick says agreeably.

The warm glow of the smiling plastic man has relaxed my anxious son. Like a powerful sedative, it has calmed him.

I too am suddenly mesmerized by the vision of the tall silent snowman standing at attention by the foot of my son's bed. But this vision seems familiar to me. What is it? I think to myself. Something standing watch over my son......? And suddenly I remember the words from a story I wrote shortly after Nicholas was born,

 My son lay limp upon his hospital bed. A yellow feeding tube was taped harshly to his soft cheek; it traveled up his nose and into his stomach. To his soft skull another plastic tube was taped, pumping antibiotics into his fragile veins. Around his floppy body, a brace made out of thick straps and stiff Velcro held his weakened hips in place. Feeding machines and intravenous poles surrounded him like quiet metal soldiers standing at attention. Everywhere, alarms sounded, a constant reminder that this was hell and we now lived in it.

(To read the story in its entirety, click here)

As I see the quiet snowman standing at attention at the foot of Nicholas's bed, my eyes start to water.

I am reminded of his infancy when instead of joyous snowmen, metal feeding pumps and tall IV poles stood watch over my fragile child. And although Frosty the Snowman may now take up permanent residency in my son's room, I am thankful for this joyous new image. I am thankful for Nick's health, his strength, his love for life.

My desperate need to clean the house is suddenly over.

My curse has been broken.

"And the Grinch found the strength of ten grinches, plus two"

To read more about our family adventures, please visit us at www.onalifelessperfect.blogspot.com.

Neuropsych Testing and Mental Retardation

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

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

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

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

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

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

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

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

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

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

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

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

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

And then finally it comes....

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

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

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

Mental retardation.

It is a terrible word.

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

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

Mental retardation.

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

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

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

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

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

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

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

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

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

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

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

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

"Are you proud of me?" he asks.

I hold him tighter.

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

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

                                ******************************

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

The Story of Our Lives

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

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

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

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

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

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

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

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

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

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

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

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

The Deadly Holiday Season

The holidays are a festive and joyous time of the year. Friends and family gather together to enjoy fun, festivities and, of course, an abundance of food.

For most of us, food is an important part of these parties and celebrations. By preparing, serving and sharing our holiday dinner, we are, in a way, also sharing our love.

But for parents of children diagnosed with Prader Willi Syndrome, the holiday season is a time to be vigilant, a time to monitor our child closer than usual to ensure their very survival.

Every holiday season, we are reminded by our national organization, PWSAUSA, that this can be a deadly time of the year for our children. Due to a malfunctioning hypothalamus in their brains, children diagnosed with PWS, lack the ability to control their hunger and if left unattended, they will eat until they die. This is not a condition that our children will outgrow, they will need to rely on others to monitor their food intake for the rest of their lives.

During the holidays, homes are filled with festive discussions, folks talk and mingle, creating a spirit of good cheer and commotion.  It is during these commotions, that we parents are easily distracted, creating a perfect opportunity for our children to disappear and search for food, food that is of course, everywhere.

School functions and party celebrations almost always include tables overflowing with candy and desserts. Teachers and aides must be carefully reminded of the devasting consequences of leaving a child with PWS unattended during these types of events. They must be informed that a behavioral meltdown is a certainity when our children are subjected to the visual stimulation of such large quantities of food and sweets.

When my son, Nicholas was first diagnosed with this bizarre and deadly disease, one of the first fears that came to my mind was how our holiday traditions would be effected.

Thanksgiving dinner was almost always served at my home, the theme always involving food and lots of it. I enjoyed preparing many of the holiday specialties. Turkey, stuffing, shrimp, mushrooms, sausages, cheese, crackers, chips and dips filled every inch of the holiday table.  Decorative dishes, overflowing with peanuts and candy were placed strategically around the house. Warm pumpkin pies, brownies and chocolate chip cookies covered another festive table along with apple cider, egg nog and a variety of soda. There was plenty of food, family and fun.

But how could my son be successful in this type of environment? How would we monitor his food intake? Would he be overwhelmed by the many sights, sounds and smells associated with a party environment? Would he have a tantrum? How would he ever feel comfortable surrounded by so much food?

After a few years of living in denial and trying to maintain the holiday status quo, I eventually came to realize that Nicholas could not be successful in this type of environment.  If I wanted to ensure the health and safety of my son, it all had to change.

I was so very sad.

I felt like we were deprived and cheated, swindled out of the opportunity to enjoy our sacred holidays. The fun, the laughter, and most importantly the spirit of the holidays, would be enjoyed by everyone….everyone but us.

I believed anything different than our usual holiday routine would be sad and uncomfortable. I was sure we all would be miserable.

But as a parent of a child with special needs, you learn to be resilient. You learn to stop living in the past. You learn to live each day in the now, experimenting with new techniques, new outlooks and new traditions.

For the past two years, Pete, Weston, Nicholas and I have experimented with “going away” for the holidays.

This year, we found a lovely hotel, called the Wentworth Inn in the white mountains of New Hampshire. We stayed for two nights, enjoying Thanksgiving dinner in their cozy restaurant. Nicholas was thrilled, since it contained, of course… a fireplace. The night before our arrival, it snowed, covering the town with a blanket of sparkling brightness.

We took many walks and enjoyed the magical setting. And although we did experience a few “I’m bored’s” and a behavioral meltdown or two, we did not have to address any food issues. There was no stress, no food policing, and more importantly, Nicholas was kept safe. It was an enjoyable holiday experience that we will never forget.

Our new Thanksgiving tradition may not be shared in a house full of family and food but it is still shared with love, love for each other, love for our family and love for our new and different way of experiencing life.

We have learned to embrace different.

We have learned to experience life.

I am thankful to my son for teaching us this.

To learn more about Prader Willi Syndrome, please contact our national organization at www.pwsausa.org. To learn more about our family adventures, please come visit our blog at www.onalifelessperfect.blogspot.com.

Parenting with an Audience

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

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

"I am," I hiss at him.

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

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

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

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

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

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

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

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

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

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

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

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