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 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.

short-sighted

We'd prepared for our visit to the optometrist in every way I could imagine.  I took her to the office the day before the appointment.  We met all the staff, apart from the eye doctor himself, who was out of the office.  I'd looked for a photo of him on the web site, but there was none.  Instead, my social story had to feature a cartoon optician.

We got to the office early.  Too early.  The toys provided in the waiting area barely captured Pudding's interest for a few minutes.  Then she skipped around the room, touching everything.  Even when her curious, sensory-seeking fingers weren't trying to touch every single pair of glasses, she constantly ran the risk of falling into the displays.  I was already out of patience when the appointment time came and went without our being called.

Finally a very elderly man walked in.  Spectrummy Daddy and I managed to contain both kids in a corner.  Waiting while our kids caused mayhem would be even more unbearable with a disapproving observer.  The receptionist helped him off with his jacket, then replaced it with a white coat.  He was the doctor?  Oh no.  He was old enough to be Pudding's great-grandfather.  How was someone so ancient ever going to be able to deal with the boundless energy of my hyperactive child.  I cast a horrified glance at my husband as we were summoned.

The calm and patient mother Pudding needs me to be was gone.  In her stead was my irritable alter ego.  I hissed commands at her.  Stop moving.  Don't touch.  Be quiet.  The trinity of things that she can't control.  Everything I did made it worse, which made me more angry.  All that preparation was for nothing.

We got her into the "princess throne" for long enough for him to determine that she has a slight astigmatism in both eyes.  Then she'd had enough of cooperating.  Every word I spoke agitated her, but the optometrist remained silent, and calm.  Had I really judged this man?  Don't I get mad about people doing that to my girl?  I'd decided that he would be cranky and intolerant before he even began.  But just look: that described me, not him.  I added shame to my negative whirl of emotions.

As I stood there wondering what my next move should be, the optometrist moved a spinning light-up toy over and around my body.  Pudding was entranced.

He told me to watch her as she tracked the toy with her eyes in a smooth motion, her head perfectly still. 

"She's amazing.  She has to make so much of an effort to see, but she follows it better than most people that come here.  I'd like to work with her, she's really great."

He asked me how I felt about trying vision therapy with her.  Honestly, I'd found that afternoon so trying that I was filled with dread at having to return on a regular basis.  But that was due to me, Pudding was fine until I'd lost my composure.  I'd looked at this man, but I hadn't really seen him.  Yet here was my girl at her worst, and he could still see the best of her.  We need him on our team.

He tested me too.  I'm short-sighted, but getting less so as time goes on.  I couldn't agree more with that assessment.

Community

Until I started blogging I never really got the idea of community.  When Diego was first diagnosed I 'Googled' autism and aspergers until my eyes could no longer stay open.  Upon my obsessive search to help educate myself and to prepare for what ended up being a hefty battle with numerous professionals, I found Jess' blog (Diary of a Mom).  Here was a woman that lived across the country, that I didn't know at all and she was writing about EVERYTHING I was feeling .  Then I found her Welcome To The Club letter and I knew that I at least found one person that seemed to know exactly how autism felt.  I would comment on her posts and she would email me from time to time offering advice and providing support. 

Then I came across a few other blogs, then a few more, and then more. 

Then I finally started my own blog.

A year and a half later and I am part part of a community. 

The Autism Mommy/Special Needs Community.  

Boy is our community amazing!

As much as I can't stand the challenges my son faces as a result of his autism, I feel so fortunate to be going through it with this group of amazing people. 

I have had a very hard time finding this kind of connection here at home and I find myself wishing we all had our own little island with houses next door to one another. 

Hey a girl can dream, right??

I had the pleasure of seeing our community in action recently and actually wrote about what it taught me on my blog.  This time of year a lot of people tend to talk of what they are especially thankful for, and I haven't said much about what I am thankful for as we have been having a pretty hard time at home.  But let it be known that  I am so thankful for each one of you that takes a moment to support, blog, encourage, joke, and love on our community.  I hope  to find that, one day, here at home, to eventually be able to have this kind of connection with someone locally. Alot of  people here in San Diego seem to be divided by severity of diagnosis and approach, to always have the need to one up each other and this approach makes it hard to build a community, at least in my opinion.  I am not interested in competing with another parent, so I don't.  One of the things that is so lovely about our community is that regardless of beliefs and/or approach we all seem to handle it in a respectful manner and not let it divide us. 

I hope that each one of you is able to work through the madness of the holidays and has a beautiful time.

Shivon blogs about life on the spectrum with her 5 year old at My Brain Wants To Go Home

S.M.I.L.E.

"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy."

Thich Nhat Hanh

The Saturday Morning Integrated Leisure Experience is an amazing facilitated playgroup for children aged 3-5 with and without disabilities run by the YMCA for our local county therapeutic recreation services.  They get to do exercise, listen to stories, sing, and art projects.  As Pudding is in an autism-specific classroom all week, this is the only supported time she spends with typically developing children.  As an added bonus, the volunteers are excellent, therefore the rest of the family gets 3 hours of respite.  Time to do those chores that are so much more difficult to do with Pudding around.  Time to spend on Cubby.  You want more?  Okay- every other week they go swimming, with one-on-one volunteers, and learn the basics of water safety.  Are you sold yet?  I am.  They had me at respite.

When we first took Pudding earlier this year though, she wasn't sold.  She walked in fine, but squeezed my hand harder.  One of the volunteers distracted her with puzzles as I spoke with the leader.  I hadn't even finished when she was back, climbing up on me as though I were a tree.  I explained how I was going to leave, and she would stay and play, and have fun.  She cried, clinging harder.  I left anyway, leaving her in the hands of the two volunteers it took to calm her down.  I felt that stab of jealousy towards the other parents who could just simply goodbye to their smiling children.  She ran at me when it was time to collect her.  It had taken half an hour for her to calm down and settle in, the volunteers informed me- nothing they couldn't handle.  (Yes, they're that good!).

She really didn't want to go again after that, and would whine through the entire car journey, but she was lured by the promise of swimming.  For the next 5 weeks she continued to go, clinging less each time, but still requiring 10 minutes to calm down.  10 minutes of Pudding crying and screaming and upsetting the other children.  I've lived through many of these episodes, 10 minutes can be everlasting.  Then in March the session was over and was not to be continued until October.

Before we knew it, October was here, and Saturday marked the return of S.M.I.L.E.  I didn't tell Pudding about it.  When she found her old Dora suitcase she would carry her swimming things in, she mentioned taking it to S.M.I.L.E., but I didn't say anything.  Pudding has been making advances lately, we're going through a good spell.  I didn't want to break that spell.  With all the ups and downs that the last month has brought, she has weathered them well, and I didn't want to take her back to that girl who would sob as I left her each week.  I know that isn't the bravest approach to take, but it is hard to be brave when you've been holding your breath for a long time.

So on Saturday morning, Spectrummy Daddy asked her if she wanted to go, and she said "yes".  She sang all the way there, then skipped into the building.  She ran into the room when it was time, and started an activity by herself, with a MALE volunteer!  She said goodbye and hugged us, but turned quickly back to drawing.  She wasn't even distracted by another girl who was flinging herself on the floor in a meltdown like the ghost of Pudding Past.  Was that really just 6 months ago?  I arrived early to collect her and peeped through the glass on the door to see her cantering around the room with some other kids, a huge grin on her face.  She looked up and saw me before I could hide, but she just stopped, beamed at me, then carried on.  When the door opened 5 minutes later, she was happy, but not eager to leave.  She collected her artwork, and said goodbye to the room, and left them with her radiant smile.

I don't know if this spell is going to last.  I wish I knew what wizardry was making it happen.  It could be the result of her teacher's efforts, or getting used to being around more kids, or her dietary changes, or the therapies, or just natural development as she gets older.  I don't know why we go through a huge leap forward at some times, and just as big a move backwards at others.  I don't get it, I don't understand it.  It is a mystery.  So movements can be both baffling and bittersweet.  This merry-go-round might just spin us soon in a direction we won't want to take.  Until then, I'll smile and enjoy the ride, holding these moments close for sustenance when needed, hoping that won't be for a while.



Spectrummy Mummy can usually be found at http://spectrummymummy.wordpress.com or on Facebook and Twitter.