Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, January 30, 2011

He Does!

OK........deep breath.....hold it.....now let it out slowly...phhhhhhhhhhhh

Are you ready?

Our latest neuropsych testing indicates that Weston does indeed have Asperger's Syndrome.

I do not know whether to laugh or cry since this is the 7th or 8th diagnosis my children now carry. Nicholas diagnosed with, Prader Willi Syndrome, Von willebrand's disease, epilepsy, scoliosis and hypothyroidism is only somewhat ahead of Weston who now is diagnosed with ADHD, anxiety and Asperger's syndrome.

Not to mention of course, my mother, diagnosed with dementia and hypothyroidism and my husband who we both believe suffers from ADHD.

Ahhhhhhhhhhhhh!

When I was little, my mother nicknamed me, Clara Barton. She called me this since I always seemed to have a temporary field hospital set up somewhere in the house. Here, I cared for a variety of sick or injured animals. Flightless birds or abandoned baby squirrels were often found resting comfortably in shoe boxes lined with hand towels. I think perhaps my mother and I knew on some unconscious level what the future held in store for me.

Now, many years later, here I am surrounded by loved ones who need me. My home, more like a permanent field hospital, filled, this time, with precious children instead of helpless animals.

And so begins that "all too familiar" process of educating myself on yet another syndrome.

Asperger syndrome is an Autism Spectrum Disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other Autism Spectrum Disorders in that language and cognitive development is typically in the average range. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.

Surprisingly, our psychologist, Dr. Nathan still disagrees with this diagnosis, her opinion based on the fact that in Weston there is an absence of  "core autistic-like" behaviors, namely the repetitive patterns, narrow interests, atypical language, clumsiness and he does not lack empathy.

The 10 page neuropsych evaluation sums it up by describing Weston as having "at least mild Asperger's syndrome/Autism Spectrum Disorder" with a recommendation that he have a full evaluation neurologically given these findings, of the sort which can be obtained through the LADDERS Program.

The LADDERS program is the Lurie Family Autism Center of Massachusetts General Hospital for Children where they specialize in the diagnosis and treatment of Autism Spectrum disorders, Rhett Syndrome, ADHD and the like.

So, do we now journey in to Boston to subject Weston to even more in-depth testing, to tell us what we now already know? Or, do we carry on and continue our quest to help our son live a happier life.

The LADDERS program is considered one of the best diagnosis and treatment centers in the country, where it is almost certain Weston will benefit from their expert intervention. More information will no doubt be helpful in our development of a proper educational plan for Weston throughout his middle school years.

My primary objective is to protect Weston's precious self esteem so that he may see himself as a successful student and happy pre-teen boy. So, I guess it's off to Boston we go.

It's funny, although we have yet another diagnosis and a slew of new appointments to schedule for Weston, he hasn't changed. He is still the same loving, funny, smart, active young man whose new diagnosis will help him to qualify for many new therapeutic programs to help make him feel good about himself!

Hey Weston.......


Friday, January 28, 2011

Visit me today at Hopeful Parents

I am posting today at Hopeful Parents:

http://www.hopefulparents.org/

Please visit this wonderful site. It is filled with top-notch writing from parents of children with a variety of special needs. Be sure to have a tissue handy....you will laugh, cry and stand up and cheer for all these wonderful families!

Wednesday, January 26, 2011

Skyler Comes to Read and Nicholas Pays it Forward

My children are the recipients of lots of special needs services.

Many caring individuals provide my children with services like: physical therapy, occupational therapy, speech therapy, behavioral management therapy and social skills training, to name just a few.

It is very rare that we get a chance to give back. This year however, Nicholas got his opportunity.

Skyler is a loving, beautiful fifth grade girl. The school thought Skyler would benefit by helping another student. They came up with a brilliant idea of how to help Skyler give back and how to help Nicholas learn how to read. Skyler's loving nature makes her the perfect reading coach. Nicholas's calm and patient demeanor helps Skyler to feel good about herself.

So, every day Skyler comes to read to Nicholas during recess. They pick out a book, curl up on a rug and read together. Nicholas listens intently and when Skyler is finished, he gives her a big hug and thanks her for coming to read to him.

They are like two kindred spirits, each happy just knowing they are helping another child in need, each thankful and happy to have a friend to love.

Monday, January 24, 2011

7 Below

It is -7 degrees below zero.

It is not often that we see a temperature reading like this in these parts.

The Arctic cold air has firmly settled in place, setting us up once again for another storm. We have been averaging some snow accumulation every 3 to 5 days with another foot expected on Wednesday night.

The view from our windows

Sunday, January 23, 2011

From Soldier to Shepherd

It has been 12 years since both of my children were diagnosed with special needs and ten years since my mother was diagnosed with dementia. I have never questioned the depth of my stamina in the past, but now must admit, I'm getting tired.

When my loved ones were first diagnosed with illness, my initial reaction to the news was shock, followed immediately by an instinctive impulse to fight these terrible diseases. I fought and fought hard, with reckless abandon, and unbridled passion. I gathered my war gear and fought these beasts with all of my might, hoping to win a victory that was sure and swift.

But the battles persisted and I found myself fighting more than just illness. I fought with the schools for more services for my children. I have fought with indifferent medical office workers to educate them on the meaning of "compassionate care" for my mother. I have fought with greedy insurance companies and complacent employees of the state to ensure we receive the illusive health benefits for which we have paid.

It seems my role for the past 12 years has been simply to fight, my passion unrestrained, my stamina endless.

So, I guess it is not surprising that in previous posts, I compare myself to soldiers and superheroes.

Lately however, my body has started to rebel against this relentless energy-burning lifestyle. At night I am tired, my muscles ache. The unbridled energy that once freely flowed from my limbs, now has its limits. That bright youthful reflection in my mirror has been replaced with an image that looks subdued, grayer. My fiery spirit burns less brightly these days as I am forced to reluctantly admit, I'm getting old.

This sudden realization has got me thinking, it may be time for a new identity.

My children have many more years left of school. After that, they will require transition plans to help them move safely into viable work and life options. They may require long term care after I'm gone. Of course there is also the difficult decision of who will care for them after I am gone? My mother, now in an assisted living facility, may someday require full time care, a nursing home or hospice. I must face the fact that although I may be tired now, I still have a long road ahead of me.

And so I am thinking, I need to slow down. I need to pace myself and visualize this journey not as a sprint, but as a marathon instead.

I am thinking I need a new image.

The images of soldiers and superheroes are no longer relevant to me. What I need is something more peaceful and slower, an image of a shepherd tending his herd comes to my mind.

A shepherd patiently leads his flock over rough terrain with a simple wooden staff instead of a gleaming sword.  He cares for his herd as passionately as the soldier, but walks slower and surer. He is constantly by the side of his loved ones, silently guiding and guarding, conserving his energy, ready to fight with a hand-made sling only when the smell of a wolf is confirmed.

I realize the religious significance of using a shepherd as a metaphor. I am not suggesting that I am God or Jesus. I simply see the humble image of a patient herder to be more reflective of the calm presence and laid-back energy I need to sustain myself in the many years to come caring for my ailing mother and dependent children.

It will be difficult for me in the future, to resist the temptation to lop someone's head off, and bask in the glow of a difficult battle fought and won for those I love. And perhaps the picture of a plain and tattered sheep herder is not as glorious of an image to behold as a shiny and colorful superhero. But it is my children (and mother) who have taught me that it is truly what is beneath our outward appearance that is important, the soul energy inside us, that makes us who and what we are in this world.

So, perhaps a little reluctantly,  I am ready to put down that heavy sword and slow down that lightening pace. I am anxious to find the perfect walking stick that will help me navigate the jagged earth that lies ahead of me for many miles. I am ready to do it slowly, safely and humbly. The warrior spirit at peace, residing quietly beneath the drab garb of a wise and weather-worn shepherd.

I am ready to embrace this new image.

Interestingly, my mother's parents came from a small European country named Albania.

It is a poor yet beautiful and mountainous country in Europe. I remember my Nana telling me stories of the little lamb her father let her raise when she was just a girl. Ironically, her father was a shepherd.

Perhaps it's in my blood after all.

Sunday, January 16, 2011

Does He, or Doesn't He?

Filled with energy up to his ears, my son, Weston is a textbook case of a boy diagnosed with severe ADHD. He struggles to control his impulses. He is easily distracted by noise, sound, even unusual smells. He lacks the ability to organize his thoughts or his things. He has trouble making and keeping friends. He is plagued by restlessness and anxiety. He is also loving, kind, funny and honest to a fault.

To top it off, Weston has a metabolism that could heat an entire city. He burns through calories and medications like they were rocket fuel, leaving him hungry and hyper for most of the day.

We have worked with many professionals, for many years, in an effort to help our son stop his engine from revving so high and allow it to putter merrily at idle speed.

This year, Weston transferred up to the middle school, unfortunately with disastrous results. A change in medication caused his moods to escalate out of control. The school supports we discussed during his many IEP transitional meetings were never initiated. New personnel at the school were woefully unprepared to handle Weston's issues. His difficulties handing transitions and understanding social situations spiraled way out of control until at last Weston found himself suspended from school with a self esteem now in the gutter.

It took many meetings with principals, teachers and finally the superintendent before we were able to get Weston out of crisis mode. My job skills as an advocate were pushed to the max. The sword I carry hidden by my side was pulled quickly from its sheath, held high and gleaming many times during these many meetings.

Of course, after stabilizing the situation at school, now came the time to sort things out with Weston's medical team. During one of our many meetings with the school, the teachers told me they believed Weston had autism, since he had trouble maintaining eye contact when confronted.

Our psychologist, Dr. N, was adamant.  No, Weston did not have autism. She explained how anxiety run amok can often mimic the characteristics of autism. Since Weston was in crisis mode, diagnosing Weston with autism at this time was reckless and  dangerous. I agreed with her and brought her in to speak with the school.

Next stop, the psychiatrist, Dr. S. He immediately took Weston off the meds that sent his moods spiraling through the roof. We discussed our options for controlling Weston's symptoms of ADHD throughout the entire school day. Since Weston's metabolism is like wild fire, he burns through the long acting versions of ADHD meds like they are baby aspirin. Both Dr S and I are reluctant to raise the dosage of these meds since there is no long term data to support the safety of using high doses of these meds for long periods of time, particularly in an 11-year-old boy. High doses of these meds can also cause negative side ffects like motor tics and an increase in anxiety.

Our dilemma now, however, is how to ensure a quality of life for my son that protects his precious self esteem? We decide to give Weston a small second dose of his existing med while he is at school.

I asked Dr. S, does he think Weston is autistic? His  response? Yes!

"What?" I asked somewhat stunned. I thought out-of-control ADHD and anxiety can "look" like autism?

Dr. S explained to me that since Weston has trouble relating to others in social ways, he could be considered "on the spectrum". He further explained that psychiatrists now are reluctant to categorize individuals into subsets like autism, aspergers, bipolar, or ADHD since all of these disorders have a wide range of symptoms that seem to overlap. There can be a wide range of how an individual is effected by these symptoms. So, current psychiatric practice is now to diagnose the individual as "on the spectrum" if he/she has several symptoms and trouble engaging socially.

Oh brother!

I now have two of my most trusted professionals who completely disagree with one another.

My question still unanswered.....

"Does he or doesn't he?"

Dr. N and I decide that it is time to schedule Weston for a neuropsych evaluation. Since the school is performing their own, we decide that it is in Weston's best interest to have an evaluation performed by an unbiased outside source too so we can compare results with the school's. Dr. N and I also suspect that Weston may have some undiagnosed cognitive and learning difficulties that are making him feel lost in class, further adding to his anxiety and feeling of inadequacy. We are also hopeful that the test will help to clarify which professional is correct in their diagnosis of Weston. And finally, it will put to rest, my biggest fear.

Does Weston have autism?

So last Thursday, the day after our big blizzard, Weston took his test.

Things at school have settled down considerably for Weston. His second dose of meds at school has helped to keep him more focused and successful. More supports have been put in place by the school and for the first time in many months, Weston seems happy.

If Weston does have autism, as a family we will qualify for more assistance from the state and the school, which is always a good thing. And really, what is one more diagnosis in this family?

However, do I want to slap a questionable label on my son that will follow him for the rest of his life, perhaps effecting his ability to hold a job, to join the armed services, or even to get married, if it is not necessary?

I guess these are questions that soon will be answered when we receive the results from his test.

That is one envelope I am not anxious to open.

Friday, January 14, 2011

The Mighty Sampson takes on the UPS Guy


This is Sampson.

He is a tiny, adorable Pomeranian dog. He weighs about ten pounds, soaking wet. His favorite activity is licking people's faces.

He is my mother's dog. My mother can no longer care for Sampson since she now lives at an assisted living facility.

Sampson was actually very helpful to us in first determining that our Mom had dementia. My siblings and I would find lots and lots of open cans of Mighty Dog on our Mom's kitchen floor. This was one of our first clues that something was wrong with our mother. She could not remember that she had already fed the dog (several times). Needless to say, as a family we are all very grateful to Sampson.

The assisted living facility does not take pets. But thankfully, my brother, Jason offered to care for Sampson when we moved Mom to her new home at the Village. Occasionally, however, my brother must travel out of town on business. So, while he is away, we take care of the lovable Sampson.

This week Jason is traveling, so we are babysitting Sampson once again.

As I mentioned, he is a small adorable dog HOWEVER he can also be very vocal, barking and circling our humble and submissive dog, Muffy. Now, Muffy outweighs Sampson by about twenty pounds, and should Muffy ever decide to fight back one day, Sampson would lose.....big time. This however, never happens, and Sampson remains the undefeated champ of the house. Except, of course, for the cat, who, with one swipe of his paw puts both Muffy and Sampson into a fear-induced coma.

Anyway, Sampson has become more and more brazen as he lives in our household. The noisy rambunctious atmosphere has somehow built up his confidence as he boldly follows the boys from one loud adventure to the next. With this new-found confidence, Sampson has assuredly taken on the self-imposed position of sole protector of the Peter's Pack. Whenever the front doorbell rings, Sampson barks furiously, as he steadies himself to bravely confront whomever or whatever comes through that front door.

Today, Sampson earned his merit badge for braveness as he fearlessly decided to take on the UPS guy.

Our driveway has a slight hill, and in wintry months it can become very difficult for cars and trucks to ascend safely. Unfortunately for the UPS guy, our latest snowstorm covered the hill in ice. Good guy that he is, he walked up our driveway to deliver our package in person. As I looked out our window, I saw him gently place the package on our doorstep and ring the doorbell. He turned to make his way slowly back down the slippery driveway.

"Barkbarkbarkbarkbarkbarkbark" Sampson snaps as the sound of the doorbell instantly transforms him into his alter ego of ferocious guard dog. I swear he actually grows a few inches.

Weston runs to the door to see who it is, and without thinking, he opens the door.

"Don't open the door!" I yell, but it is too late. Sampson has bolted out the door, barking furiously and headed like a torpedo directly toward the rather large UPS guy. I had to bite my lip to stop myself from laughing as the mammoth delivery man freezes in his tracks.

"Holy shit!" he exclaims as he puts up his hands and backs tentatively away from the frenzied fur animal.

"It's OK," I shout, "he is very friendly!"

But the UPS guy doesn't believe me. He is frozen with fear and completely paralyzed as all the color drains from his face.

"He sounds vicious but he is really very tame," I try to explain.

"Lady," he says, "I don't care what you say, that animal is one of those Gremlins!" and the behemoth UPS guy turns and runs lickety split down the slippery hill!

I am laughing so hard I am crying. The boys are standing with their mouths open as they have never seen a large grown man run away from a small dog before. And little Sampson returns from his trial run as a guard dog rather pleased with himself for chasing the scary man away.

I am no dog whisperer but I could swear little Sampson was smiling.


Thoughts from a Snowbank





Wednesday, January 12, 2011

Pummeled!

The snow is getting deeper by the minute as we are now in the neighborhood of 15-20 inches. Shoveling seems futile as once a spot is cleared, 2 more inches piles up. Much more snow from this system than last week's Nor'easter.


 The snow is up to Weston's waist and still coming down heavy
Notice the snow on the side of the house from the wind


Muffy coming out to join Weston in enjoying the storm




Nick playing with his truck
Snow piled up to the windows

Love this one of the snow coming down on Nick











Not a happy camper

Pounded with Snow!

We are getting pounded with snow. There is already a foot of thick wet snow on the ground with heavy snow expected to continue throughout the morning. Winds are blowing and expected to be stronger as the day progresses.

The boys are so excited as the snow is coming down at about 2 inches per hour with some rumbles of thunder thrown into the mix.

Front steps almost covered in snow


Bird feeders



Pete's van and my bushes covered in snow

The trees are starting to bend with the weight of the snow

These are our power lines to the street.
We may loose power shortly as these should be much higher

Our mailboxes

Another buried tree

A big buried tree






There is an apple tree in the middle of this photo