Monday, May 7, 2012

May Awareness Then and Now...

As we move through this May Awareness month, we are still grateful to Senator Brownback, who in 2010 helped The Focus Foundation declare May as the national awareness month for X & Y Chromosomal Variations. In accordance with Senator Brownback, “it is our hope that with greater national awareness about the existence of X & Y Chromosomal Variations, children with these disorders can be diagnosed and provided with the syndrome-specific medical care and academic intervention they need."

Two years later we still strive to expand our visibility and bring attention to the prevalence of X & Y Chromosomal Variations in children born each day and to encourage much needed early diagnosis and intervention for newborns, children and adults. This year we have submitted proclamation requests in over 40 states, continuing on the mission started in 2010. We are working extremely hard in a variety of other facets to ensure that every child has the chance at a proper diagnosis and appropriate education. Here are just a few things The Focus Foundation is doing to spread the word this year.

Dr. Sprouse, Melissa Bilash, Members of Mom Congress and Senator Casey's Aide
Tuesday, May 1st, The Focus Foundation, Melissa Bilash, and members of Mom Congress were lucky enough to travel to the Senate to share the term “educationally relevant” with Senator Casey (PA) and Senator Harkin (IA). The term refers to a criteria that schools use to determine whether or not a child needs a related service to access their education, and schools often use this term to discontinue or downgrade services available to children because they are not seen as "educationally relevant" but rather "medically relevant" and thus not an educational necessity. This line between what is educationally relevant and what is medically relevant often allows for necessary services to be denied and thus forcing parents to pay out of pocket, or forgo treatments and services completely.

It is imperative that congress defines what is "educationally relevant" so school systems have the proper definition of educationally relevant to offer services that children need and deserve. Since, congress is in the process of reauthorizing the Elementary and Secondary Education Act, it is time to bring awareness to the problems surrounding the vagueness of "educationally relevant" and craft a definition that will allow every child to progress appropriately, to meet their various needs that interfere with their ability to learn, succeed in school and prepare them for life and adulthood.

At the Focus Foundation, we are working at the national level to develop IEPs that are targeted, syndrome specific and that recognize the link between brain and behavior, in order to maximize the growth of each and every child towards reaching their full potential. As well as, combining forces with Mom Congress, Parenting Magazine's all parent advocate group focused on positive change in the education system, to increase visibility for all our disorders and make sure all children are receiving the best education possible.

May Awareness 2012 is off and running, we have already seen an influx of newly diagnosed patients  from all over the world with 47, and 48 and 49 finding us and looking for more information! Let's continue to do the good work and make sure many more children are diagnosed this May so proper care and treatments can be given to ensure bright futures for all!

Tuesday, May 1, 2012

May Awareness - Focus on Spreading the Word!

Many years ago, I had the privilege to meet children with X and Y chromosomal variations. They were young, some newborns, they were teenagers just diagnosed and they were school age boys and girls who were smart, yet failing in school and frustrated. 

Their parents expressed with great conviction three facts: the kids were smart, yet school was disaster, the kids were confusing, in so many ways, and lastly they needed help...

It has been a journey filled with unbelievable surprises and delights. Through the generosity of the Bucksbaum family, The Focus Foundation was born. Based on the premise that children with X and Y Chromosomal Variations have tremendous strengths and that, indeed, they are atypical learners.

With help anything is possible and with the continued support of many benefactors, The Focus Foundation has grown worldwide. Oktoberfest, sponsored by the Stratts Family, was a tremendous success and has supported several new studies on boys with 47, XXY, 48 XXXY and 49ers. Parents have held birthday parties and in lieu of gifts - given donations. Gifts were small and large, but each one focused on the CHILDREN!

Calls come everyday from all over asking, "our child has just been diagnosed… can you help us?” Or “I have new patient with 49, XXXXY and the family needs your help!” The word is spreading and our goal is moving forward!

Some of the greatest contributors to science, education, industry and entertainment were and are atypical learners including Steve Jobs, Einstein, Edison and Bill Gates, to name a few. Let's not forget Jay Leno, Tom Cruise and Alyssa Milano and Patrick Dempsey. The list of superstars who struggle with learning is long, but they all share their commitment to success.

Our Focus is to optimize each child's development by embracing his or her learning differences, supporting the challenges and infusing every day to focus on success and it will come. 

Focus on what is hard and work harder

Focus on the Goal: independence, extraordinary self esteem and work hard.

Focus and when it gets tough - work even harder

Any and every child with X and Y chromosomal variations, dyslexia or dyspraxia will be successful.  

Focus on spreading the word. Start small - tell one new person everyday this month about The Focus Foundation and the word will spread and more children will be identified and receive treatment. Focus big and gather donations from friends, families and businesses.  

Help us, help them, today!  Focus for 31 days!

Friday, April 27, 2012

Ensuring the best for our kids...

This has been one of the best and worst weeks! I had the pleasure of observing a great school for children with learning differences; with invested teachers and kids learning and growing academically. It all worked. Then, I reviewed goals from several school systems throughout the country... their goals were not well developed, their objectives not measurable, and with great confidence I can say, that there will be no progress without a well developed IEP. 

The road map to a good IEP is based on an in depth assessment that looks at each and every aspect of your child's learning style, how it relates to his diagnosis, what he loves in school and what he hates. The variance in learning guides the progress and the child's ability to close the gap on his learning disorders. The IEP must be grounded into the science of learning, the neurology of the disorder and the creativity of the team! 

I was heartbroken by the incident with the little boy with Autism in Cherry Hill, New Jersey, yet sadly I was not surprised. Our school systems need to weed out the teachers who cannot express optimism towards a child with Autism, or any other neurodevelopmental disorder. The public school systems need to promote good teaching and punish teachers who are not rising to the occasion. Many years ago, my youngest child told me "lots of teachers have a mommy voice and a kid voice," she then added, as innocently as children do, "I like their mommy voice better."

All children deserve respect, kindness and support, but exceptional children need it the most because life is more challenging, learning is harder and the world is more confusing! We all need to demand no less for our children! If you live in New Jersey, push for legislation to insure that this is guaranteed.

Read more about the story here.

Thursday, April 19, 2012

What An Unforgettable Conference!

This past weekend was The Focus Foundation's 2nd Annual Atypical Learner Conference and what a success it was! We cannot thank our outstanding group of speakers enough for the amazing information presented throughout the weekend. 

Dr. Andrea Gropman kicked off the conference with an impressive overview of the neuroscience behind boys with XXY and girls with XXX; a truly great way to start the conference! Next, keynote speaker, Nancy Clements, introduced everyone to the wonders of Social Thinking and her informative and entertaining presentation was a favorite among many attendees. Dr. Sprouse's presentation ensured that all attendees will now be able to identify the presenting signs of Developmental Dyspraxia in children, as well as, push for the development of targeted treatment plans and syndrome specific goals to promote function and recovery so that every child has the ability to reach their full potential!

This year we also had a breakout session with panels consisting of parents of children with varying chromosomal variations, dyslexia and dyspraxia. This was a very exciting session for many and offered time for parents to compare stories and learn from others' experiences from raising children with X & Y Chromosomal Variations to dealing with the school system and IEPs.

On Sunday, Melissa Bilash presented "Developing the Appropriate IEP without Litigation." This topic was definitely of great interest to many of the parents present. Her ability to share her experiences in creating appropriate IEPs offered many the guidance and help they needed in dealing with this very important matter. Dr. Paduch followed Melissa with an update on the early management of Klinefelter's Syndrome. His data regarding androgel and the developing bodies and brains of boys with Klinefelter's provided many attendees to take note and ensure their child gets the best and most up to date care.  Dr. Jay Giedd, of the National Institute of Mental Health, presented a plethora of information about the brain and ADHD... his MRI brain images were truly remarkable!

This weekend could not have been such a great success without all of the wonderful parents and professionals who attended and were so enthusiastic about the information presented to them! Thank you and see you next year!

Dr. Sprouse, Teresa and the girls

Friday, February 10, 2012

Atypical Learner Conference Announced!

THE FOCUS FOUNDATION is proud to present... 
For Children with X & Y Chromosome Variations, Dyslexia and Dyspraxia
  Friday through Sunday, April 13 - 15, 2012
Annapolis, MD

Sessions will include:
- Social Thinking®
 - Brain Behavior
  - Developing the appropriate IEP without litigation
 - Is it all about the X?
 - Neuroscience: Function of girls with XXX and boys with XXY
 - Parent Panels

Some of our speakers include: 
Melissa Bilash: Special Education Advocate, Founder of Advocacy and Consulting for Education (ACFE)
 Nancy Clements: Social Thinking® Program Manager for The Stern Center for Language and Learning
 Dr. Jay Giedd: Neuroscientist, Chief of the Unit on Brain Imaging in the Child Psychiatry Branch at the National Institute of Mental Health
 Dr. Andrea Gropman: Associate Professor of Neurology at G.W.U, Georgetown University, Principal Investigator at the Center for Neuroscience Research, Children's National Medical Center
 Dr. Darius Paduch: Assistant Professor of Urology and Reproductive Medicine at Weill Cornell Medical College
 Dr. Carole Samango-Sprouse: Associate Professor of Pediatrics at G.W.U., Director of the NDC for Young Children

 Early Bird Registration: $175 for the 1st person, $125 any other persons in group (Deadline March 16)
Regular Registration: $225 for the 1st person, $150 for any other persons in the group (Deadline April 6)

Wednesday, February 8, 2012

Time Is of the Essence...

Time is an amazing concept for humans and perhaps the most intriguing is time and it is impact on the evolution of children with special needs. When I was new to the field, I would say with great confidence where I expected and hoped my patients would be in one year -- five years. I am a born optimist so I always expected that my special kids would accomplish much. Their parents were dedicated and focused on helping their children reach their potential, and I was lucky enough to understand the connection between brain, developmental progression and success many years ago. Thus I was off and running with each and every new patient and family. And, I loved it!

More importantly many patients surprised me, awed me with their accomplishments like no one expected! Most of all their specialists or the school systems!

When I started in this field, I loved the little ones and the more complex kiddos because I loved the challenge. At first I was planning to follow my patients until they were five years old.  But as they grew developmentally both the families and I learned that
time to develop for all children is precious and when used wisely everyone profits.  Families wanted to stay and I wanted the kids to do their best and learn with them, so five became ten and then ten was 20 years!

But what never ceased to amaze me is just how much children can do when we -- the adults -- help them get it right!

I am sharing two separate stories that in so many ways have the same process, both with great outcomes -- but also very different in their own way.

I met a young boy with XXY when he was toddler and he was a challenge but his family never lost sight of his potential. We tweaked with different services and different learning environments, we wrestled with the school system who often wanted to watch rather than help, but we persevered with the belief that it would come together and pay off if we worked together. We gave him the right support at the correct time based on his brain, his disorder and my knowledge base. Sooner perhaps or later he would blossom!

In the meantime, we would be there no matter what. Eventually he grew and middle school was very challenging, insurance companies had to be threatened and endless school meetings were held. Sometimes it looked like trouble found him no matter where he was!   Indeed he was a boy and a middle schooler so in some ways it meant he was growing but all of us had pains
SO we waited, worked and remained focused on his competencies knowing the frontal lobe of his brain would grow. Here is the amazing part -- he is now in high school, he grew almost 12 inches in less than 18 months and so did his brain!

He is doing well, he likes school and his confidence has soared. Some challenges remain but he is coming into his own. He has friends, he tried out for swimming and although he did not make the team -- he did fine handling the disappointment. Yet just few years ago school looked dim, socially he was isolated and personal responsibility was a word for adults and not this GUY! Time, fighting through all the necessary battles and the utilization of proper services based on syndrome specific goals -- and he is reaching his true potential.

My second story is perhaps a bigger accomplishment with even bigger challenges. I met my little Italian boy with Down syndrome many years ago -- he was beautiful and sweet beyond words. Faithfully, he came to see me every year and his mother's motto was elegant in its simplicity -- she wanted him to do his best and she would take care of the rest.

We worked together to defy the stereotype of his disorder and propel him to new heights. He read and he became more and more independent. He had a crush one year on an older school counselor and he found a girlfriend.  He went to different schools at various times to achieve his greatness, some with inclusion, some self contained. When it was necessary to push him further he went to boarding school.

He grew and he learned -- often more than even anyone expected. Fast forward and he is now in his 20's, school is over and new challenges lay ahead. My Mr. Dan lives in sunny California in a semi-independent setting. This new setting presented some new issues and sometimes significant setbacks until those setbacks were understood in the proper light. 
In many ways it was like he went off to college! He rebelled and ate junk food until all hours of the night. He gained the freshman fifteen. Maybe even more but he had more freedom. He even "no-showed" for work! Maybe more notably at times he refused to follow the simplest directions. It seemed like perhaps semi-independent living, his new job, managing his own schedule, and arranging for his own transportation to take him to his job, was too much! But time and trust worked when the adults remembered the simple fact that goals had to be individualized, measurable, and specific to him just like in school, even now in his 20’s! WHY? Because it leads to success and growth for anyone and everyone!

His mom and I worked with the residence, and took it step by step and without fail Dan rose to the challenge -- he made the big leap to taking care of business with just a little help from his friends!

I recently made a site visit and here is what I saw. Dan manages his apartment with another adult, and he holds two part time jobs, one at Law firm and one at Wal-Mart, He arranges his own rides to work. He also has a girlfriend and is arranging to celebrate their first anniversary together!

Time has been good to both of these kids. Dan defied all the odds because his mom only saw his potential, his competency and never his disability!  My other young man with XXY was fueled by a father who had the patience of a saint with every system and great confidence that his son would indeed "get it!" Time --- Expertise -- Hope -- Patience -- Confidence -- Competency -- the super bowl of recipes for success regardless of who you are or what you want to do! NO matter how old you are.

Thursday, December 15, 2011

On IEP Meetings...

In the last few weeks I have participated in multiple special education team meetings. There are four that come to mind specifically. Four different states, four very different children, with four very different disorders. There were so many consistent features in each of these meetings in spite of the fact that the children are so vastly diverse! It led me to wonder what makes a successful school meeting? The team? The parents? The child? Or the advocate? Or that special combination, like a great recipe where it all clicks!
The first thing they had in common was that all the teams had similar participants. Speech and language, physical therapy, occupational therapy, special education, assorted administrators and of course parents who love their children dearly, are invested and WANT to follow through with recommendations. Despite these invested parents, each meeting has one dependable feature, the school team's resistance to understanding the relationship between the brain, medical diagnosis and education. A resistance to recognize, or perhaps it is a very basic lack of understanding, how important brain based intervention is. It should drive every suggestion, idea or input on the IEP.

Each meeting begins with the same fairly typical tension and in some cases overt hostility between the school and the family. And, of course as the outside consultant antagonism
is typically the norm. They assert their expertise, which would make sense because they are doing the job everyday of educating the children. Except that in my case each child I have worked with has had a rare neurogenetic disorder. Sometimes these disorders are as uncommon as 1 in every 100,000 individuals. What further compounds this unique dance between school professionals and parents is that I am considered an expert usually on these rare disorders. I may have cared for several children if not forty or fifty boys and girls with this specific neurogenetic condition.
So here is my challenge... How does one impart important and vital information to school personnel about these rare disorders? Equally important, how does one build a
rapport with the team so that they recognize their own major knowledge gaps with these unique disorders?

Typically, they will listen politely and reply in degrees varying from apathy to overt resentment
that you (the parent) have a medical plan and we (the school) of course are an educational system and that is not educationally relevant!
I began wondering what is educationally relevant? Or more importantly what is not educationally relevant in a child with handicapping condition? Is putting on a coat educationally relevant
if you are 7 years old and cannot do it? Seems like it should be! There are hundreds examples of the term educationally relevant being used as if only reading and writing are important to independence and success.

Or in another case, a first grader, born with a rare disorder that assures reading disabilities. This first grader has significant delays in speech and a major discrepancy between expressive speech
and receptive language skills. Yet, a battle ensues (not a small one) on whether they use a software that encourages phonemic awareness. And, again more importantly why now?

You wonder...

WHY do educators resist the obvious connection between brain and education?

WHY do we split medical diagnosis from educational services?

WHY do most teams say "Oh, that is a medical model" whenever medical information is available?

Most importantly, WHY do we think we can take the BRAIN out of education!

As an optimist, I try educating the educators and public school personnel on the intimate interface between medical disorders and educational success; teaching the importance of targeted treatment and syndrome specific goals that are brain based; and always keeping an eye on the future while I'm grounded in the present and growing from the past goals.