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.

Tuesday, February 28, 2012

Looking For a Fix

I used to think that the two worst words for a parent of a child with special needs to hear were...

"Prior Authorization"

Lately, I have discovered a more loathsome word pairing.....

"Drug Shortage"

In the past 6 months, I have called and visited more pharmacies and doctor's offices than a drug rep from Pfizer.

I am the mother of a child diagnosed with severe ADHD.

I have searched the Internet, the neighborhood and the state for the last remaining handfuls of Ritalin.

Since ADHD medications are narcotics, Massachusetts law requires me to physically pick up a presctiption each month from our pediatrician. Phoning or faxing presctiptions to the pharmacy is not allowed.

With all supplies of Ritalin on back order, only a few pharmacies have any in stock. Those who do have it available, have only a few dosage strengths left. As a result, I must first find a pharmacy that has meds available and then visit with our primary care doctor again so he can rewrite prescription after prescription for the "most available" dosage.

I am in his office so often, his staff is beginning to think I am a hypochondriac.

I have frequented so many pharmacies, my photo is on their list of potential drug abusers.

I feel like a crack addict.

But my efforts have been futile and it is my child who is suffering.

I am overwhelmingly aware that many folks do not recognize ADHD as a real disorder. Current dogma persuasively perpetuates the belief that ADHD is nothing more than a label used by lazy and delinquent parents to disguise what is just the end result of poor parenting.

Instead of providing my child with dangerous medications, all I really need to do is cut out sugar and dyes from his diet, add vitamins and fish oils, outlaw video games, employ stricter punishment tactics and my son would be miraculously cured.

It is surprising to me, how this distorted philosophy is so often regurgitated by those who do not have children diagnosed with this condition.

ADHD is a real disorder.

I have seen firsthand what it can do to a child.

It is not caused by parental failure or an inherent "badness" in a child.

It is caused by a brain that is not functioning properly.

It is inherited.

And it is indeed real.

My son has struggled to be successful in school. His restless energy and lack of impulse control have effected his ability to maintain friendships and build long lasting relationships. He is judged, scorned, disciplined and outcast by the world.

Students, teachers, administrators, and parents alike, often do not embrace Weston's unique personality. He is not valued. He is not understood. A steady stream of punishment and negative feedback has transformed my once happy and carefree spirit into a sullen and moody pre-teen who questions his worth in the world.

My son's meds have saved his life.

They have enabled him to learn, to succeed and to live happily in this world.

I have witnessed this successful transformation and the overwhelming positive results of what an appropriate medication treatment can do for a child who struggles from mental health issues.

Denying him treatment, is to me, nothing short of child abuse, no worse than a parent who denies their child treatment for cancer or diabetes.

And so, as his mother, I continue to search for answers.

Why are medications that will help my son being withheld?

Ask the drug companies and they will tell you that in an effort to control illegal distribution of ADHD meds (to college students and the like) the Drug Enforcement Agency (DEA) sets a "quota" for distribution. Once the yearly quota is met, no more meds are distributed, regardless of pulic demand

The DEA will tell you that they need to set these quotas to control the illegal distribution and misuse of ADHD medications. They blame drug companies for convincing physicians to unnecessarily prescribe these substances thereby inflating their markets and increasing their profits.

President Obama will tell you he has asked the FDA to look into it and has worked with Congress to sign legislation to prevent this issue.

Ask the FDA and they will tell you they do everything "within their legal authority" to prevent drug shortages.

ADHD experts like Dr Russell Barkley and Dr. Ed Hallowell will tell you that ADHD is actually under diagnosed in this country with many children and adults suffering from the effects of untreated illness.

They will tell you that currently there is no blood test or brain scan tool to use as a means of diagnosing this disorder. The only way to determine if a child (or adult) has ADHD is to treat them with medication. If medications work, the patient has ADHD.  Predicting a yearly quota of just who and how many will seek treatment is an unrealistic expectation.

Does this all sound like madness to you?

Are parents of children diagnosed with ADHD and cramming college students really our biggest drug threat?

All these departments, companies, and federal agencies are talking, but no one is telling me anything.

In the meantime, my child has not received the medication he deserves to treat his illness.

How can this happen?

What would public outcry look like if supplies of insulin were withheld?

And what do you suppose is going to happen once medications are available? The fear of stockpiling now becomes a reality.

I was told that all supplies would be back to normal by the first of the year.

It is now almost March, and I still cannot find the appropriate "prescribed" medication for my child.

I am beginning to consider using these "illegal" distribution channels and perhaps even a few college campuses.

Of course I can just see the headlines now.....

"Special Needs Mother Wanders Streets of Boston Looking for a Fix"

Visit me today at....Hopeful Parents. Click here.

Saturday, February 25, 2012

Forget Holland, Welcome to the Land of the Lost

If you are the parent of a child with special needs, you are no doubt familiar with the essay “Welcome to Holland” by Emily Perl Kingsley.

It is a beautiful piece that attempts to describe the experience of raising a child with special needs.

It compares special needs parenting to preparing for a vacation in Italy but instead arriving in Holland. The author explains that although Holland is not the expected destination, it becomes a beautiful place to live none the less. (Click here to read)

While I love the beautifully written piece and found much comfort in reading it, my experience raising children with special needs has been somewhat more...shall we say....intense.

My holiday excursion did not land me in Italy, or Holland, or Paris, France for that matter.

Instead, I ended up here.

I was abruptly transported to “The Land of the Lost," a 1970’s television adventure series where Rick Marshall and his two children Will and Holly experience an earthquake of epic proportions that sends their tiny raft over a 1,000 ft waterfall and into an alternate universe filled with dangerous creatures and mysterious technology.

 Like the Marshalls, I too am trying to find my way home.

Not because there is no beauty.

On the contrary, like Holland, the prehistoric environment is beautiful, the adventures exhilarating and interesting…..

It is just that I am so darn tired of running away from dinosaurs and Sleestaks all of the time.

Thursday, February 23, 2012

Band Aids and Eco Lips to the Rescue

When Prader Willi Syndrome is discussed, most folks immediately think of the uncontrollable food seeking aspects of the disorder.

What is less known about the syndrome, but equally concerning is the obsessive skin picking behavior that also accompanies PWS.

We have been very fortunate. Nicholas is 10-years-old and not food seeking yet. His interest in food has gradually increased over time. At this point, he is interested in knowing when it is time for lunch, dinner or snack but has not started to sneak food. We have locked our pantry where we keep most of our food and snacks. So far, we have not had to lock our refrigerator or remove food from our counter tops.

We are very lucky! I know!

We are ready to become more vigilant about food when necessary.
We hope for the best but prepare ourselves for the worst.

Picking however, is another story.

According to PWS Behavioral experts, Dr Linda Gourash and Dr Janice Forster, this behavior, much like the satiety issues is caused by a failure to inhibit bodily impulses. Areas of concern include:
  • arms, face, scalp
  • lips, nose, nasal septum
  • cuticles
  • toenails, teeth
  • and in severe instances, rectum
No specific treatment has been uniformly effective. Since the activity usually occurs secretly, behavioral interventions are difficult to implement. A basic behavioral treatment principle is that no attention, positive or negative is given to the individual. This helps in preventing escalation of the unwanted behavior. Redirection and involvement in other satisfying activities is helpful.

According to Gourash and Forster, the behavior appears to be "obsessional" but not obsessive-compulsive in nature. Boredom and anxiety are usually the triggers. Medications targeting OCD or anxiety have not been specifically helpful. Although, Topiramate in low doses has been effective for some.

Nicholas has started to pick at his lips and fingers, pulling at his cuticles or tiny pieces of skin, until they start to bleed. So far, these have been the only areas of concern on his body.

Our current plan of attack????

For his fingers.....Band aids!

And lots of them!

We put them on in the morning.
We put them on before school.
We put them on after bath.
I have given the school several boxes to use during class time.
The clerks at CVS are starting to look at me funny!
Yes, band aids have become a way of life around here.

In fact, we purchase so many, I am thinking of buying stock in Johnson and Johnson!

For us, the picking seems to occur when he is bored. So far, the band aids have been effective at stopping it. We also keep his finger nails cut very short.

"Out of sight, out of mind" seems to be the helpful philosophy as well as keeping his hands engaged in another activity. We use the heavy-duty fabric band aids since he can easily remove the flimsy plastic ones. I would find them stuck to the couch or placed carefully on several of his beloved stuffed animals.

While I am up to my ears in band aids, Nicholas, on the other hand is as happy as a clam since band aids hold a special place in his heart, right next to fireplaces, candles, backpacks and garage door openers.

To prevent Nicholas from picking his lips, I found a great product called Eco Lips Lip Care Kit. It is a small kit that consists of lip balm and a variety of carrying devices, necklaces, clips and belt fasteners.

Nicholas prefers the necklace and wears it around his neck. When he has the urge to pick at his lips, he uses the lip balm instead. So far, it works great. The cost for this product is about $20 and may be available in other stores. To visit the Eco Lips store click here.

For those of you also raising a child with skin picking issues:

Posted below is "A Program to Address Typical Skin Picking"
This was developed by the Pittsburgh Partnership.
We have found many of these techniques helpful.

Wednesday, February 22, 2012

My Confused Cactus

This is my Christmas Cactus. I have had it for many years.

This is astounding to me since I usually forget to water any kind of indoor plant and usually end up killing them.  But for some reason, this one has survived. Perhaps because it is a cactus and requires very little water? Hmmmmmm?

Anyway....this cactus blooms twice a year, Christmas and spring.

It is February 22, and I think like the rest of us, my plant is confused.

Is this winter or just a very long spring?

Tuesday, February 21, 2012

Then and Now

This was last year...brrrrr.

This is this year.....

It was so lovely this weekend, we went to the beach!!!!

For New Englanders, that just doesn't happen in February?

Last year was one of the toughest winters I can ever recall.

It was bitterly cold.

We had mounds of snow.

We averaged one major snowstorm every week.

This year however, it is quite a different story. This has been one of the mildest winters I can ever recall.

It has been warm and sunny. A weatherless winter with no precipitation of any kind, not even rain!
Weston searching for treasure at the beach. 

And although it has been somewhat chilly, it has been mostly bright and sunny.

This is Lynch Park, a park, garden, playground and beach recreation area. Yesterday, Pete, Weston Nicholas and I spent the day beach combing and playing in the sand. It was a fun and unusual day for February!

Here's what the park looks like in summer...

January and February are typically the snowiest months of the year here.
But this year, we have not had a single storm.
Frankly, after the brutal winter last year, I am not complaining.

The boys, on the other hand, are very disappointed, since they both love to play in the snow.
Although, it was Mark Twain who once said, if you don't like the weather in New England...
 just wait a minute!

Thursday, February 16, 2012

So, What Causes Anxiety in Children Diagnosed with Prader-Willi Syndrome?

We know now that Nicholas is suffering from anxiety.

We also know that this anxiety as interfering with his ability to learn, to speak and to behave calmly in the world.

So, what is causing this debilitating issue?

And more importantly, how do we treat it?

These answers are not so easy to find.

Is his anxiety caused by his physical disability? Is he wired to be anxious?

Is it behavioral, caused by certain stresses in his environment?

Is it hormonal, as his body is starting to mature? Is there some hormone inside his body that is lacking, or perhaps too much of another hormone that causes him to feel stressed? Does his growth hormone need to be increased?

Is it food related? Is the thought of food becoming so distracting, it is causing him to be anxious all day?

Or is it perhaps, all of the above?

And when do we as parents consider medication as a treatment for this condition?

As Nicholas and I journey from one specialist to the next, in an effort to unravel this mystery, it appears at least to me, that it is all of the above. Nicholas is plagued with many, many issues that predispose him to anxiety. My job as his parent is to address each one.

But where do I begin?
Is it a physician we need, a psychologist, a psychiatrist, an endocrinologist, a neurologist, a PWS expert, a developmental pediatrician, or a special needs advocate?

Do we need medication, behavior plans, locks, hormones...or voodoo magic?

The answer for us, has been....again...all of the above.

Except the voodoo of course...although I wouldn't rule it out if I honestly thought it would help!

We started where Nicholas's anxiety was the worst....school.  He suffers from issues like: lack of academic progress, speech dysfluency, behavioral issues, skin/lip picking and a lack of writing skills to name just a few. Our latest Neuropsych report indicates a significant drop in IQ.

So, we hired a PWS educational consultant named, Naomi Chedd and a special needs advocate/attorney to help us sort through the issues. We are hopeful that by addressing these issues first, we will see an overall improvement in Nicholas.

Once school issues are resolved, it is off to a developmental pediatrician who was referred to us by our new Geneticist. This physician will review all of our test results and the latest accommodations we have made. They will review the data, and Nick's demeanor to determine if his anxiety has improved. If it has not improved, they have the ability to prescribe medication. This, however, is a last resort for us, since both his Neurologist and Geneticist believe Nicholas has a very laid back demeanor and medicating him right now may actually cause him more harm than good.

So, our  first step is the IEP today!

As an added note, it has also been a very intense few months for me. The appointments and professional discussions have my head spinning. Since I am the caretaker for both of my children, I need to slow my pace so my overall health (as well as my mental health) does not suffer.

I do honestly believe my son is like a mirror, he reflects the energy of the individual nearest to him. I have found that folks with strict, narrow and inflexible energy have an immediate negative effect on Nicholas. He responds more appropriately to calm, nurturing and flexible spirits.

I am thinking of taking a "just me" weekend, a time for me to relax and calm my restless spirit. What good is treating Nick's anxiety if I too am a source of his stress?

This looks pretty relaxing to me, don't ya think?

A "time-out" for Mummy.

Saturday, February 4, 2012

Tom Brady and Me, How the New England Quarterback is a lot like a Parent of a Child with Special Needs

Addendum: As a response to many Google searches:
No, Tom Brady does NOT have a son diagnosed with autism.
There is, however, another handsome New England quarterback who does.
His name is Doug Flutie, who in 1984 made one of the most spectacular plays in college football history. While playing for Boston College, he successfully threw a last minute 48 yard pass to win a game against Miami and secure his award of the Heisman Trophy for what is now affectionately dubbed in the New England area as "the Hail Mary Pass."
He had a successful career playing in both the American and Canadian Football Leagues. He also played for awhile in New England as back-up QB to Tom Brady.
 Doug Flutie and his wife, Laurie have a son, Doug Flutie Jr. who is diagnosed with autism. They created the Doug Flutie Jr Foundation for Autism which has been widely successful at raising funds and creating awareness for those diagnosed with autism.
To learn more visit: www.flutiefoundation.org
And now, back to my original post.....and Tom Brady.
For those of you living on the moon,

Tom Brady is the Quarterback of the New England Patriots.

On Sunday, he will play one of the most important games of his life.

And while I am, of course, a Bostonian, and a lover of all of our sports teams, to me Tom Brady is something more.

To me, he is a lot like the parent of a child with special needs.

Let me explain.

When folks gather round to talk about the greatest QB in NFL history, it is not unusual to hear names like Brett Favre, Dan Marino, John Elway, Johnny Unitas, Joe Montana, and Peyton Manning.

There is no mention of Tom Brady.

And yet in terms of winning percentages, Tom Brady has 124 wins in just 161 games. That is a staggering percentage of 77% - and the best by far in NFL history.

To give you some idea of how great that accomplishment is - the second highest winning percentage goes to Peyton Manning - with a winning percentage of 67.8!

As impressive as that may be for a regular season, Brady has nearly the same winning percentage in the postseason (playoffs) - again at a staggering 76 percent. For his career, Brady is 16-5 in the playoffs which ties Joe Montana for the most postseason wins by a starting QB.

That is some kind of consistency.

The Patriots have been in the playoffs all but two of his 11 seasons as starter, in one of those seasons he was hurt and did not play.

Tom Brady has won more Super Bowls than Favre, Unitas and Marino combined!

This will be Tom Brady's fifth Super Bowl as a starting quarterback, which will tie John Elway for the most starts in the "Big Game".

Not too shabby a performance for the 199th pick in the 6th round of the 2000 NFL draft!

And yet, he is rarely mentioned in discussions of quarterback greatness.


To me, he is like a parent of a special needs child, he is invisible.

He stands right in front of us day after day, getting the job done (in spectacular fashion) and yet he goes unnoticed.

He leads his team with quiet and humble determination.

He ignores thoughtless and ignorant comments.

He is honest, admitting when he's had an off-day.

He does not seek the spotlight, instead he supports and encourages others.

He works hard every single day, setting a good example and focusing on the little things that will get his team into the end zone.

He does not play for fame or fortune.

(He converted $5.28 million of his 2007 base salary into a signing bonus that was spread out over the remaining portion of his contract so that it could free up cap room to absorb Randy Moss' incoming contract.) What athlete does things like this for others?

He works hard to see his beloved team succeed, to get them to where they all deserve to be.

Oh, and not to mention:

Tom Brady will be heading up "Team Tom Brady" in the Best Buddies Challenge: Hyannisport, MA on June 2, 2012, to raise funds and awareness for Best Buddies, a charity dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities. (http://www.bestbuddies.org/).

And so, it is Tom Brady's quiet greatness that reminds me of all of us parents who have children diagnosed with special needs.

 If you were to ask Tom Brady how he feels about his invisibility, his lack of colorfulness, his under-recognized "superstar" status.....like a parent of a child with special needs, he would probably tell you that he prefers it this way.

And so, in honor of Tom Brady and all of my fellow special needs parents....

Good Luck at Super Bowl XLVI!

I can't think of a more deserving man!