A Promise Kept

Some promises are like pinky swears, little whims of a deed or intention to be kept.  They started when we were children on the playground, in the school yard at pajama parties and created light hearted bonds of friendship. We were conditioned early to know the importance of "keeping promises" and the bonds that would be made or broken if not kept.  These were lessons, good and bad,  learned and felt, instilled in us to create loyalty and trust.

Some promises are made of love, passion and emotion.  The promise to marry, to be there for good and for bad, through sickness and in health, to forsake all others and death do us part.  The maturation of those little pinky swears taken to a completely different level and meaning.  A promise often times impossible to keep.  A promise that again teaches us, good and bad, learned and felt of the fragile nature of promises intended.

Some promises come from your soul.  They are not always spoken, they are not given a ceremony, but they are there and they are the most important you will make.  These are the promises we make to our special children.  They are the ones born of a determination and courage that only a parent can know.  These are the promises that keep us up at night and enduring all day.  These are the promises, good and bad, learned and felt that we can never break.  Why can't these promises be broken?  It's simple. They come from our hearts in a place so deep they become a part of us.

I made a promise to myself and to my daughter, it seems like an eternity ago, of another lifetime.  You will succeed,  you will get through this, you will have the life you deserve and I will never give up on you.

For most parents this seems like a very typical promise to make to your child.  For a parent with a special needs child struggling to function in a chaotic and frightening world it is anything but.  These children test us to the limit.  They test themselves to the limit.  Every day of their lives is difficult, complex, dysregulated and gains are made in micro-doses.  There are times we feel we will not be able to keep those promises we made.  There were times I felt I would not be able to keep those promises I made.  We not only fear our inability through our resounding inner thoughts but are often told by those we seek advice to adjust our expectations.  To them I say, I totally agree.  I totally agree that we need to adjust our expectations of how, when and where our children will make those incredible gains.  I agree that we need to not only re-evaluate expectations but at times, many times, not have any.  Most importantly I think we need to adjust our expectations of ourselves, who we are and for whom we are really setting them for in the first place.  So yes, I agree our expectations need to be adjusted but never ever forfeited.

"You will get through this"  a spoken promise.  What was actually said was "You will get through this because I will be there for you, I see how much you are struggling and I will do whatever it takes, no matter what  - we will get through this"

"You will succeed"  an unspoken promise.  Succeed is a subjective word.  Success to one is something very different to another.  For me success meant that my child will not only be educated, given the tools and acquired skills to get over her many hurdles, understood and accepted but most importantly respected for who she is.  I don't measure her success with trophies or awards, class standing or popularity.  I don't measure her success by others.  I measure her success by her own personal achievements and mastery of her once deficits. Her success is her own and WE earned every drop of it.

"You will have the life you deserve" the promise too important to say aloud.  The promise that says happiness will be yours for the taking.

Keeping these promises is no easy feat.  The obstacles are enormous and parents are constantly put under a microscope.  Special needs parents are often perceived as dramatic, unwavering, filled with a sense of entitlement, over reaching, and inflexible in their pursuit of accommodations and treatments for their children.  We are a force to be reckoned with that's for sure.  With the confidence that comes from becoming an informed educated parent we learn not only every nuance of our child's disorder or disability but the true meaning of being an advocate.

Advocating for the right venue, style and focus of education will be key.  Focusing on the positives of our children instead of listening to the negatives will empower not only us but our children to reach goals.  In our doing so we not only are standing up for our child but teaching them to stand up for themselves. We are teaching them to self advocate, to think outside the box, to be confident in their differences.  There is not a day that goes by that I do not hear from a parent about how their child has not only met - but exceeded their expectations.  These kids are special not only in their needs but in their brilliance.

Advocating for the right treatment in choice of medications, types of therapies and a thorough medical evaluation and testing gives to a mutual respect and true collaboration between clinicians and parents.  No one knows a child like the parent, being heard gives parents the validation they deserve and opens the dialog for better communication, calm and more productive problem solving.  Not only are parents evolving but so are clinicians, gone are the days, or should be, of I know what's best.  Good doctors know parents are their greatest resource in understanding and treating disorders. They say it takes a village "They" are right, but not any village. It takes a village of people that have respect and acceptance of special needs children and the struggling parents and siblings as well.

Advocating for your child is in essence what keeps the promises.  Advocating for yourself and your family as a whole, gives you the resolve and strength to keep going and attain your goals.  It is "getting" your kid when no one else does.  It is understanding the unexplainable, the irrationality and the unpredictability of your child. It is taking a breath, taking a walk, regrouping and always coming back.   It is gaining that trust in your child so they know, no matter what, you are their voice and you will be heard.  It is keeping that promise and making it to yourself as well "We will get through this"

"You will succeed,  you will get through this, you will have the life you deserve and I will never give up on you".

In the end, despite goals met or unmet, expectations adjusted or exceeded, subjective measures of success and the constant pursuit of happiness, the most important of all the promises is the last.

I will never give up on you.

Marianne

Potpourri

Potpourri, I have always loved that word. The word congers up wonderful thoughts of bountiful fragrances, a palette of beautiful colors and a feeling of tranquility. It brings back memories of my grandmothers house with little aromatic bowls that gave her home its signature scent. It is a wonderful word.

The word potpourri has several definitions. The first, as I mentioned, is an aromatic mixture of dried herbs, spices and flowers. It also, in present day use, describes a miscellaneous collection or medley. The etymology of the word is French pot pourri, literally, rotten pot dated back to 1749.

When using the word Potpourri in reference to the child with a mental illness it takes on a whole new meaning. Professionals use the term "co-morbidity". I think I like "potpourri" better. Co-morbidity is the term used for multiple disorders. It is "literally a rotten pot".

Comorbidity makes for high rates of misdiagnosis among these children. It is rare that you find a child with just one disorder. Tourette Syndrome, OCD, ADD, PDD, Autism, Depression, Bipolar disorder the list goes on and on. Often times these children have one or more additional disorders which not only makes the diagnostics more difficult, but the treatment pure trial and error.

Adding to the confusion are the subgroups within the disorder. An example: A child with Tourette syndrome with severe exacerbation of tics or ocd symptoms after a strep or viral illness would be considered for a diagnosis of PANDAS or PITANDS as their subgroup. A test to identify the D8/17 marker would be performed. Treatment would be initiated. Seems simple, but it is not. There are subgroups within even this subgroup. Example: some children with PANDAS or PITANDS have different presentations. There is a subgroup that only have exacerbations after viral illness and others only after bacterial. Some respond to antibiotic treatment and some do not. On the autistic spectrum, there are some children who while with fever have significantly reduced symptoms. Dr Andrew Zimmerman at John Hopkins has done studies on these children and its relationship to the release of cytokines. Some of these children respond to augmentin - a preparation of amoxicillin and the potassium salt of clavulanic acid - rather than its base component amoxicillin alone,others do not. It is an eclectic puzzle. A potpourri.

Treating the child with multiple disorders, a potpourri, is a daunting task. Sifting through the symptoms to label the disorder is sometimes futile. It is understandably necessary for insurance coding but often times serves no purpose. Treating the symptoms is key. Looking at the child as a whole instead of a diagnosis, I feel, often times serves the child better. We are all complicated creatures but the child with a mental illness is like a convoluted bowl of emotional potpourri.

The Creation Of A Bully By The Oblivious - When Adults Behave Badly

There are times when I feel that all of us advocating for children suffering with mental illness and Special Needs are making a difference, and then, there are those times that the reality of the stigma that still hangs over these kids heads strikes me like a lightening bolt.

A few days ago I was contacted about an upcoming High School Dance Team heading to a state competition and asked to give my opinion and make a statement.  I chose to bite my tongue, check the facts and wait to see if compassion and human kindness would prevail in hope of a different outcome.  Well,  I waited, it didn't, and I will bite my tongue no longer.

Waunakee High School Varsity Dance Team led by team coach Erin Cotter have spent much time on their chosen performance.  Unfortunately not one second of it thinking about the horrific pain and suffering of those that they are portraying.  NOT ONE SECOND.  The team will be dressed in straightjackets detailed with full restraints with the words "Psych Ward" proudly worn across their chests as they dance to "We Get Crazy" To add to the effect they will be wearing black make up, dishevelled hair and contorted facial expressions.

So that would be parents, numerous school administrators, educators, school athletic coaches, costume designers, State Competition officials, dozens of adult onlookers sitting in the stands, and one head coach at the very least that were aware of the performance.  Not one saw anything wrong with it.  Not one thought of the child or teen, parent or grandparent sitting in the audience who's heart would pound upon watching.  As a matter of fact when approached this is the statement that was given:

 “I don’t understand where they are coming from,” she says. Hip-hop is all about being “bold,” she says. Last year, a competing team dressed in orange jumpsuits pretended they were prisoners, she says. “The whole point is to get people pumped up and energized. Our intent had nothing to do with mental illness. Our total intent was just a hip-hop dance and the songs and the words that were popular. The thought never crossed my mind or the school’s or the parents’ or the kids’ that it was about mental illness.”  Erin Cotter Head Coach



There are some that do get where "they" are coming from.  Here is one of the many quotes published in the past few days responding to the routine.


 “The pictures are quite disturbing,” says Hugh Davis, executive director of Wisconsin Family Ties. “We had parents and kids with mental health issues standing in the office with tears in their eyes. This brings up painful memories. It is incredibly insensitive.”


Was it an oversight - I believe so.  Was there intentional malice - definitely not.  Was it in poor taste - absolutely. My issue and what prompts me to comment now is with the fact that instead of acknowledging the mistake and changing the routine once they were advised of the controversy and media attention, it was dismissed as ridiculous whining from people that have nothing better to do with their time than be offended.  Well,  I have a lot to do and I do a lot with little time to spare so I know they are not talking about me.  I think what it comes down to is good people that made a poor decision. Moreover, to compare costumes of prisoners in orange jump suits who have brought about their own circumstance to people mentally ill in straight jackets does not sit well with me. 


Met with such debate and ridicule, they have decided to now make amends and cover the words "Psych Ward" on their shirts.  They plan on reading an apology before the dance to anyone who is offended.  


OK Is it just me?


If you know you are offending people, if you know what you are doing is insensitive, callous, hurtful or disturbing DON'T DO IT.  That is how you make a difference,  That is how you teach teens that if you make a mistake you own up to it and you correct it.  That is how you teach compassion for others.  That is how you educate about children with special needs and mental illness.  That is how you stop the bullying.  That is how you stomp the stigma.  You do not cover it up.  You do not offer a less than heartfelt apology and continue to do wrong.  

Children are suffering terribly.  Parents are suffering terribly.  Siblings are suffering terribly.  They are suffering because they have a loved one with a mental disorder one of the most devastating of illnesses. They are suffering because diagnosing a child or teen with mental illness is a daunting task and even once identified, treatments are often ineffective and side effects severe.  Mental illness is not only devastating but often times fatal.   For many families hospitalization is the only option.  It must be a heart wrenching decision. It is a traumatic experience for any child or teen who has to be sent for treatment.  It is not to be minimized by a dance routine portraying manic zombies with psychotic features.   It is enormously insensitive.


What's next hip hop school supervised dance routines with Cerebral Palsy on their shirts?  Perhaps the next vogue "bold" statement will be shaving their heads and portraying children suffering with cancer.  Where will it end?  Mental illness is no different than any other childhood disease and these teens and their families deserve the compassion and respect that would be afforded any other seriously ill child and parent.


Call me the eternal optimist but as I stated at the beginning of this writing,  I waited for right to be done, I bit my tongue hoping that with education would come compassion and a mistake would be turned into a valuable teaching tool.  The dance will go on and I feel for those girls that worked so hard on their routine, they were misguided, I find no malice in them. They were inadvertently being taught to bully.  I feel to dress up as a mentally ill teen and make fun of the facial expressions, mannerisms, and unkempt appearance of those suffering is absolutely appalling.  I think it a disgrace to the adults who were supposed to set examples for this generation, teach teens to stand up to bullying, teach acceptance and foster tolerance to condone the dance and condemn those who were offended.  It's never too late.  Coaches, educators, school administrators and parents should use this as a way of opening a dialog with children about mental illness and all special needs children and adults.  


As I write this I see this not as a set back but as a possible step forward.  Many of us work tirelessly to help stomp the stigma of mental illness and childhood special needs, we are making a difference but we are not there yet.  There is nothing more tragic than a child or teen suffering in silence in fear of the stigma attached to getting help.  Teens and parents often do not seek treatment for fear of the judgement, bullying and negative impact that disclosure of the illness will bring.  Take this opportunity to take that step forward.  With education will come compassion - it's time. 


After Post...


Please take the time to read a letter written by a 15 year old girl named Erika to Coach Cotter sent to me by Chrissa Hickey - I think it says it all. http://chrisahickey.blogspot.com/2011/02/guest-blog-letter-reaction-to-head.html

The Life Unexpected - The one you were meant to have

As little girls we played house and created a world with the perfect home, husband and child. Pretending to be a mom was a world with aprons, easy bake ovens, high heel shoes and pretty red lipstick. We knew this to be true, we saw it everywhere. It was on our televisions everyday. Donna Reed, Leave it to Beaver, Make room for Daddy even I love Lucy had moms with an idyllic charm that captured our imaginations.

As teenagers we rebelled. We were not going to be the idyllic housewife with pearls around our necks and children at our feet. We had new role models now. Mary Tyler Moore, Julia, That Girl and Charlies Angels transformed our beliefs. We dreamt of our careers and friendships and our lives as modern women.

As young ladies we became educated, got our first jobs, met the men of our dreams and felt the excitement and power of our first independence. We were empowered by the women on Cagney and Lacey, Knots Landing and Dynasty. The strength of these women changed our view of life and how we knew our life would be.

The men of our dreams became our husbands our partners our lovers. Maturity brought us to a balance of knowing that we could, if we chose, incorporate all the wonderful role models that had been set before us and have it all. We could wear that apron, advance in our careers, be strong formidable women, have that baby on our hip and do it all while wearing our best pair of stilettos. It was all laid out for us. It was the life we expected.

As woman and mothers we came to the stark realization that not unlike the fairy tales of our earliest memories, there are twists and turns and unexpected tribulations.

For some women life has given them pretty much what they expected. They seem to effortlessly walk through life and are truly content. For others, they are given the unexpected. They are given a child with a disability. They are given a heavy heart, not by the child, but by the illness or disorder that plagues them. These women feel limited in their choices, they feel they cannot have it all and feel a sense of loss for their happily ever after ending.

The woman of a child with a disability has been given the life unexpected.

Along with the unexpected can come the expected. If what we expected of ourselves as little girls, young ladies and women was to become nurturing, educated, independent, strong and supportive - then mothers of children with disabilities have not only met but far exceeded those expectations.

My father once told me "Expect nothing and you will never be disappointed". Seemed a bit harsh even a bit ridiculous. "Without expectations there are no goals" I replied. Looking back, I think I missed the point.

Perhaps the one thing never taught to be expected was to have a purpose. Maybe in some way having a true purpose in life - to be truly needed - may not be the life expected but the life you were meant to have.

The Dream Of Independence

I was honored to have Amalia Starr as our guest this week on The Coffee Klatch.  Amalia speaks and advocates passionately about the right and journey to independence for people with Autism.  Parental fear for the ability of their children to live independent lives can be overwhelming.   These fears can inhibit their child’s chance for a productive and independent life.  The sleepless nights worrying about who will care for their child once they are gone is universal among virtually every parent I speak with. The message I got from this interview is that parents need to overcome their anxieties and foster independence.  This amazing woman has now started the Autism Independence Foundation which will help families and young adults with autism lead productive lives with a community of support.

Elise, one of the hosts of The Coffee Klatch who writes beautifully about her journey raising two sons with Aspergers Syndrome a form of Autism. wrote a blog post that truly upholds the message from that interview.  Elise writes of her first year college son’s evaluation with a recommendation for future studies and career direction.  Clearly what was interpreted from the evaluation and what is in Elise’ mind and heart are two completely different things.  The title of this post is “Dreams” http://t.co/pxn4hed   Her son dreams of a career in law, the evaluation reportedly finds that not to be a viable option and alternate recommendations are made. 

I often think about the reality of the situation that many parents are in.  I think about the endless efforts and complete dedication that parents tirelessly devote to their children.  I think about, very often, are we being realistic?  Are we deluding ourselves to believe that our children will take everything we have spent decades teaching them and apply it to create an independent, productive and most importantly, happy life. 

Constructing realistic goals for special needs children is essential.  Reality based decisions need to be made on level of impairment and acquired life skills, of this there is no doubt.  Setting unattainable goals for our children will only lead to disappointment and failure but regression as well.  Are we setting them up for failure?  Are our expectations too high? Are we wasting our time?

Time will tell.   Time will not only tell if a mothers heart and soul can prove more accurate than a scientifically researched evaluation report, but if there truly is any way of calculating determination.  I am not only referring to the determination of the parent but of the child or young adult as well.  How can courage, capability and human motivation be so easily measured?

The word dream has many definitions.  The ones I find most important are these:

A strongly desired goal or purpose

Something that fully satisfies a wish

Something notable for its beauty, excellence, or enjoyable quality

A visionary creation of the imagination

What is a life without a dream? What is a life without desired goals, purpose, wishes, beauty, enjoyment and visionary creations?  There is another definition of a dream: A state of mind marked by abstraction or release from reality.  Fair enough, but where would be today without the abstraction of release from reality?  What incredible advances would have never come to pass without these unrealistic dreams and visions for the future?

Who is anyone to take the dreams of these children and disregard decades of over coming adversity?  Who is anyone to take the dreams of these parents that devoted their lives to these children and in one fifteen minute conversation project the future?

These women are turning their fears and anxieties into determination.  They are well aware of the importance of balancing reality and dreams.  They are fully aware of the limitations as well as the competencies of their children. They are not allowing their children’s futures to be predestined.  As did the mother of Dr Temple Grandin, they are not letting autism define their children.   Their futures and their dreams are yet to unfold and no one can take that away from them. 

Dancing in The Rain - Learn to let it go

Life isn't about waiting for the storm to pass ... it's about learning to dance in the rain ~ Vivian Greene

The storms, I have waited for more than my fair share to pass. When younger, I fought them.  I am now older and wiser.

I would wake to another day of despair. Another day of wondering how I got here and how I would get out. I woke thinking of the boy who broke my heart. The young woman that strengthens me. The little one who keeps my heart beating. The man who has loved me unconditionally and the girl whose suffering has taken my soul, the one who brings the storm.

I had wonderful memories and a happy life. I had known love, affection, happiness and contentment. I held on to those memories. They gave me hope. Hope that I would someday have them again, and I do.

In some ways my life is like a tragic novel. In others it is a story of determination strength and hope. It is a story of motherhood and all the hopes and dreams that we expect, but should not. Some of it is quite funny, some of it is just sad, much of it is just unexplainable. All of it makes me who I am.

The boy that broke my heart. He was 17. There had been a car accident. He was not my biological son, but he was mine. I loved him as mine, I raised him as mine and I miss him as mine. The unexplainable. He died six years ago September 9th. That is the official date but his actual death was a week before when his soul passed through my husband and I as we we stood in the hallway of the ICU. It was an electrifying breeze that went through us, and we knew. Unexplainable - how could such a young, talented and sweet soul be taken - it will forever be the most painful moment of my life.

Regrets come with loss. It's the little things. I still cannot pass his bathroom and not feel regret. Every morning he would wipe toothpaste on the sink and throw the towel on the floor. Every morning I would yell at him. Now, I would give anything to clean that sink and pick up that towel. My daughters bathrooms are a disaster and I couldn't care less. I've learned to let it go.

The young woman who is my strength. She is twenty four now and finding her way. I admire her. She has such compassion and depth. She makes me laugh. Through all the difficult times she could always make me smile. She has been through so much. She lost her father at eight and she lost her brother who was her best friend at seventeen. To say she was devastated would be an understatement. Somehow, she grew strong and optimistic. Youth I guess. A young life with so much sadness and confusion. She has grown into an amazing, independent, successful woman - she is happy - she is a joy. She learned to let it go.

My heartbeat. She is sweet and fragile. In some ways she has been through more than all of us. She has lost her childhood in a sense. She has known loss, heartache and faced the storms way beyond her fourteen years. A lot like her older sister, she is beautiful and kind. She is still the one with her brothers picture under her pillow. She is the sensitive one. Despite it all, she has found a way to overcome all the adversity and thrive. She is once again happy, outgoing and just being a kid. She learned to let it go.

The storm hit without warning. The storm affected everything in its path. The storm raged inside my child. She was the most beautiful baby I had ever seen. She was healthy and happy and mine. She was different. No one else saw it, but I knew. A mother just knows. She is sixteen now. She is brilliant, not just a good student or smart but brilliant. Her life has been a series of doctor appointments, blood work and brain scans. She is tortured by her illnesses both physically and emotionally. She grapples with the irrationality of her life on a day to day basis. She is a prisoner of anxiety. She has faced the storms. At times I would say she has even provoked the storms, but she is outrunning them. She no longer harbors the bitterness and anger of being chronically ill. She is getting better. She has hope. Hope is the mainstay. Without hope there is nothing. How does she find the hope - she's learning to let it go.

On some level, happiness is a conscious decision. It is the decision to not feel guilt over things of which we have no control, to let go of regrets, to be happy, to intentionally seek the good in life and people. Accept what you are given and never give up hope. 

With the acceptance of who you are and of what life has brings you comes the change.  Life's hardships change you, they can change you for the better, its all up to you.

Life is too short.

Learn to let it go.

While we waited for the storm to pass ... we learned how to dance in the rain.

An Amazing Six Months - Who knew?

Who knew?

Who knew that four women and one man from different parts of the continent would come together and create a forum that has become a staple in the special needs community?

Who knew the path this journey would take us on?

Who knew the amazing parents, grandparents and educators we would meet on this incredible internet highway?

Who knew the outstanding, award winning and renowned experts that would honor us with their appearances?

Who knew?

It is hard to believe it has only been six months since the launch of The Coffee Klatch. Just the sheer volume of expert guests alone is astounding. The vast array of topics and disorders covered is equally staggering.

This forum was created for you, the special needs parent. It is my hope and goal to provide the best possible information on any particular disorder either emotional or physical.

I am proud to say, I truly feel we have.

Along the way incredible friendships and invaluable bonds have been developed. We are a community. A community that stands together, shoulder to shoulder, pushing forward to make this world a little better for these special children.

It has been a privilege to be a part of such an incredible collaboration.

It has been an amazing six months ... And there is much more to come.

Who knew?

Very grateful

Marianne

Vacuuming -

These economic times - three dogs - five humans - I've been doing a lot of vacuuming lately. Vacuuming has become almost therapeutic for me. I always laughed when my husband would be plowing the snow or power washing the deck with that focused and preoccupied look on his face. As I looked up and saw my image in the mirror I saw that same look, that same preoccupation - and it was great. I realized as I was cleaning that I was really removing the dust from my mind.

I think at these mindless times we do our best thinking, our best reflecting and our best brain storming. So many thoughts went through my mind today. So many ideas and images.

I thought of the word "Autism" I thought of all the amazing people I speak to and correspond with every day. Then I thought - how misunderstood that word "Autism" really is. It truly is a spectrum, a broad sequence or range of related qualities, ideas or activities. An umbrella term for so many subgroups.

The perception by most people about autism is an extreme and hopeless childhood illness. Unfortunately, for some it is devastating and keeps them locked in a world that until recently has been a mystery. For them it is a prison. However, the majority of the people I speak to do not find it hopeless and are not on the extreme end of the spectrum. One of the subgroups in autism is Asperger's Syndrome. Although autism starts in childhood it is not only a childhood disorder. The autism or aspergers does not go away. It is accepted and reshaped and it is in the mind and hearts of many adults who suffered as children by the lack of support and understanding in an era of ignorance. The many adults I speak to like to refer to themselves as Aspies. Aspies are fabulous. Aspies see a different spin on the world, a spin that makes them some of the most creative, intelligent, successful and caring people I have the pleasure to know.

So, I kept vacuuming.

Now, I was thinking of a guest I had on my show The Coffee Klatch, Taylor Morris. I was so moved and touched by her and her mother and found myself truly able to look at my daughter and myself in a completely different light. As I vacuumed it seemed like a whole new language came to me and a dialogue played in my head.

So, I kept vacuuming.

I began to look at what I once saw as a curse - to be a gift. I saw that if used properly with self acceptance and understanding this "gift", could be channeled and cultivated and lead to an amazing journey through life.

That dialogue that had been going through my head, I believe, once spoken, may have changed the course of our lives and true understanding of acceptance.

I think I'll keep vacuuming.

Prenatal Stress and The Inception of Childhood Anxiety

Can prenatal stress cause anxiety disorders in offspring?

Recent studies show it can:

 Abstract Pregnancy is associated with major physiological changes and adaptation to these changes is crucial for normal fetal development. Heightened emotional stress during pregnancy may interfere with the necessary adaptation and lead to dysregulation of the two major stress response systems: the Hypothalamic–Pituitary–Adrenal (HPA) Axis and the Autonomic Nervous System (ANS). Negative effects on the fetus of such maladaptation have been documented in both animals and humans and range from poor birth outcomes to negative impacts on neurodevelopment, as well as long term emotional and behavioural disturbances..... Aaron Levin

"Aberrations in fetal experience in a subset of persons, whether caused by stress, infections, or famine, alter the neurodevelopment of the fetus," explained epidemiologist and developmental psychologist  Stephen Buka, Sc.D., a professor of community health at Brown University Medical School. "That should be considered established.".... Stephen Buka

"When you connect what we know about neuroanatomy with the pathophysiology of schizophrenia, it seems quite logical and is supported by the evidence that some portion of those brain abnormalities in adults have their origins early in fetal development," said Buka.

It is also important to explore the possibility of variable periods of vulnerability throughout gestation.

The data above shows the significance of stress at certain periods of gestation. Other similar findings of anxiety and behavioral disorders in offspring have been documented during periods of war, famine and other catastophic events.

It is then plausible that extreme prenatal stress, from any source, not only catastrophic events, can cause dysregulation of the HPA or ANS in offspring?

Below I site just a few of the many studies connecting prenatal stress to long term mental illness in offspring.

Prenatal stress and infant affective reactivity at five months of age.

http://www.ncbi.nlm.nih.gov/pubmed/21194854 

Depression during pregnancy: is the developmental impact earlier in boys? A prospective case-control study.

http://www.ncbi.nlm.nih.gov/pubmed/21208585 

Prenatal stress and neurodevelopment of the child: focus on the HPA axis and role of the placenta.

http://www.ncbi.nlm.nih.gov/pubmed/19546565

Effects of antenatal stress and anxiety

http://bjp.rcpsych.org/cgi/content/full/180/5/389 

Can prenatal stress be a precursor to endocrine disorders later in life?

Can prenatal stress alter cortisol levels and create panic attacks, anxiety and phobias?

I believe it can.

Conversely, it has been hypothesized that low levels of maternal prenatal stress may actually have an adaptive value for the offspring.

Parents should be educated about the negative effects of prenatal stress. Care should be taken to provide support and counseling for these woman especially in the first trimester http://www.ncbi.nlm.nih.gov/pubmed/21208585

Medical Historian Key Role in Parenting A Special Needs Child

When I worked at the hospital, I was repeatedly told that the H & P (history and physical) was key to proper diagnosis and treatment. Having an accurate and up to date medical history can be the difference between life and death in an emergency room situation. A National Electronic Medical Records Database is essential to ensuring quality health care and should be part of our new healthcare plan.

Being the best medical historian you can be for your special needs child is paramount.

Having a child with special needs often creates a busy and stressful environment conducive to forgetting important information which is key to proper diagnosis and treatment. Keeping a journal and charting are two good ways to ensure that your child's history is correct.

Another important consideration in keeping detailed accurate records is the unlikely event of the absence of the primary caregiver.

Parents do not have to wait for a formal diagnosis to begin keeping a record of physical and emotional abnormalities. Journaling symptoms to discuss with your pediatrician or mental healthcare provider does not need to be specifically formatted. It can be as simple as jotting down observations and dates in a plain notebook or calender or keeping a journal on your PC. In the latter, I would recommend printing out hard copies for your file in the event of a computer crash.

Once a formal diagnosis is made, I feel it important to make a weekly (or during times of medication trials, daily) entry to document your child's progress or regression. As most parents of a special needs child are aware, symptoms and behaviors wax and wane and can soon be forgotten. I cannot stress enough the importance of daily documenting during times of medication trials. These are very hard times for the child as well as the caregiver. Recording the medication, form (brand or generic), dosage and times given, as well as any side effects is crucial. Adjustments are often made and it is key to have a point of reference.

As your child's disorder progresses changes are inevitably going to have to be made. Sometimes the change may be in the choice of treating physician or in the addition of one. Here is where the history is most important, this is where the H & P, as you give it, will decide treatment.

Charting is very popular and useful. Psychiatrists and therapists treating school age children will give forms for your child's teacher to fill out and return. The information is on a scale basis and requests specific information such as attention span, mood, social ability, grades as well as other important information. Always keep a copy for your file.

Keeping an accurate and up to date file for your child will make your life easier and alleviate one of the many stresses of doctor visits. Be sure to get copies of all reports, blood work, scans and other diagnostic testing for your personal file.

Remember, independence is not far away, your child will eventually grow up and move out.  Having a history of medications that were effective and those that caused intolerable side effects will be helpful as they begin to maintain their own mental health management.

You can find sample forms, logs and other record keeping ideas online.

Keep it simple, but get it done. It is key to parenting the special needs child.

Autism Awareness Month - were you aware?

This month of April has been Autism Awareness Month.

For me it has been bitter sweet. On one hand, on a personal level it was a very productive and exciting month with amazing guests. We kicked off our Autism Awareness campaign with the most well known and inspiring of all autism advocates - Dr Temple Grandin. We brought you a young lady, Taylor Morris, who brought us into the "Other World" and stole our hearts. We are ending our month much like it began with an incredible author and advocate John Elder Robison. I have tried to spotlight every aspect of families and adults living on the spectrum while still featuring other amazing guests and Children's Foundations. Our quote for Autism Awareness Month on The Coffee Klatch - "With education will come compassion - its time"

The above, of course, was the sweet.

In interviewing many children's organizations and major foundations over the months I have been taken by the camaraderie and close knit communities that they have formed. The wearing of certain colors and ribbons to show support for many diseases and disorders shown brightly.

Where are the colors and ribbons and media attention for Autism? The color was blue. New York City did its part and on April 1st lit the Empire State Building top blue in honor of Autism Awareness month. I did see the beautiful brightly colored puzzle piece ribbon on many Twitter profiles. What I did not see was ONE person wearing a ribbon - selling a ribbon or sporting a ribbon bumper sticker.

Why?

After having The Christopher Reeve Foundation as my guest I began to think about it. Their global efforts and research sharing is bringing results and hope. They are a solid community.

What differentiates the two? Unity.

The divide is significant. On one hand, there is tremendous support and information sharing among both parents and affected adults. On the other hand there is hostility, disrespect and at times a complete lack of compassion for those not sharing the same view.

It is hard to wrap my brain around the complexity of it all. It is hard to not have compassion for all involved and all their efforts. It is also hard to express the devastation in the voices of the parents or the frustration of not being heard and part of the solution for the affected adults.

The views, opinions and convictions of our advocates are as vast and overwhelming as Autism itself. Perhaps it is in the continuum where the issues lie. Perhaps it is the frustration of so many different presentations and degrees in its symptomatology, causes and levels of ability that cause the divide. I am not sure. What I am sure of - it is not working.

Don't get me wrong - these are great people trying to do great things. These are great parents trying to raise great kids. It's all great - except for the unity.

The divide lies in your belief

Neurodiversity

Neurodiversity - atypical (neurodivergent) neurological wiring is viewed as a normal human difference that is to be tolerated and respected as much as any other human difference. - Gregor Wolbring

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind. - Harvey Blume

Neurodiversity The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood. - Mike Stanton

Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:

I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.

The "Cure"

The search for the cure. Those searching for the cause through environmental or genetic research in hope of a cure for autism.

The "Cure - "the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes". - Andrew Solomon

For the parent with a child that is nonverbal - self injurious - has complete inability to communicate or interact with other people - loses previously acquired ability to say words or sentences - have continuous need to performs repetitive movements, such as rocking, spinning or hand-flapping or are oblivious to pain yet cannot tolerate the gentleness of a mothers touch - Can you blame them?

There are wonderful Autism organizations doing amazing research and finding the links and genetics attributed to Autism. They give hope - they know Autism is not going away. They are looking for the pieces to the puzzle as it is not a matter of putting them in the right place but of first finding them.

Until then, many parents will be desperate for a cure. The lack of protocol has led to parents seeking unsubstantiated therapies and treatments. Some argue that certain therapies and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous.

And lastly,

The Elimination of Autism - The search for use of prenatal genetic testing through a genome project. Some are concerned that the "ultimate cure" will be a genetic test to prevent autistic children from being born and that most fetuses with autism would be aborted if prenatal tests for autism are developed.

Excerpts from a wonderful article by Spencer Hatton:

"There's nothing worse than seeing a desperate parent, raising a child with autism, believe a cure is at hand.

But in the world of autism, disappointment quickly follows hope as cures vanish, wasting precious time and money.

I know. I was one of those parents".

So - what is the answer? Well if you listen to Dr Temple Grandin - it is early intervention - one on one early intervention is the most important accommodation for a child. This one on one should encompass many different forms of OT, play and behavioral therapies. Modeling - exposure to new things - a proactive approach to sensory issues. The understanding that many skills are not naturally acquired and may take a long time to obtain even if not mastered.

In my mind - the answer is acceptance. Accepting the vast differences in severity and ability and lifestyle. Accepting that there is no "one" cause and there will be no "one" treatment. Accepting that it is time to stop holding on so tight to your beliefs that you impede the goal. Accept that 1 in 110 (conservative figure) children will be given a diagnosis of autism on some end of the spectrum and that is a HUGE population. Accept that Autism does not go away - you do not grow out of it - our upcoming adult generation will have a significant autistic population.

Accept that our world is a better place due to the amazing Aspies that have brought our technology and science fields to the forefront of the world. Accept that not everyone needs or WANTS treatment. Autism for many is a gift - a true gift that they would not trade for anything in the world. Start paying attention to the people around you - start reading some of the amazing novels and enlightening books written by people on the spectrum.

Read "Look me in the eye" by John Elder Robison and be inspired by this man's story. In it you will find insight into the painful memories of a childhood of an undiagnosed boy and the struggles to "fit in" and how time, personal growth and a communities acceptence made this aspergian whole.

Accept that there are parents seeing horrendous suffering and want desperately a cure. Accept that a mother should be able to hold her child and kiss her child without causing pain.

I call for a show of unity within the Autism community both by those affected, those with children and mostly, the prominent Autism Advocacy organizations.

It's time.