The Significance Of Little Acts Of Kindness

I woke this morning, read my emails and lost it.

What made this morning different eludes me.   I am usually able to hold it together.  I can usually look at things with compassion and often empathy without bringing myself to tears with the ability to distance myself from the gravity of it all.

As I said, today was different.  As I sat with my glass of iced green tea with a sprig of mint (ok the jig is up, I do not drink coffee) I started reading my emails.  The writings from parents in such pain for their emotionally or physically disabled children were so heartfelt.  Their frustrations and fears came pouring through.  I remembered the pain, the confusion and the feeling of hopelessness of when my child first became ill.   I felt powerless and overwhelmed by the enormity of their situations feeling any contribution I could offer would be insignificant.

These parents ask nothing of me.  They come to me knowing that I am here to listen, encourage and support them.  They know that if I can find a resource to make their lives and the lives of their children easier, I will move mountains.  They know that I have walked in their shoes and can understand their need to vent and explore every possible option.  They know I "get it" and for them that is enough.  For me, today, it felt as if it was not.

The day continued along as usual working on The Coffee Klatch, playing taxi for my children and having a sanity break lunching with friends.   Yet still, this feeling clung to me. What difference does anything I do make in the reality of these situations?  What can I give these parents to ease some of their pain?

And then it happened.

As the day unfolded it became clear to me the significance of the littlest things, the little acts of kindness, the power of social media and the click of a button.  Let's start with a little angel that crossed my path.  Abbie.  Abbie is little girl with Down Syndrome and Leukemia.  She is beautiful, she will turn eight on June 11th.   A post on our Facebook wall from her mother led me to ask our followers to send her a message of support and hope. You see, Abbie loves to get cards and posts on her Facebook page, it makes her smile. I was so touched by this little girl that I posted it on my private page as well.  When I returned home today and checked my social media sites - there it was.  Followers of The Coffee Klatch sending Abbie their well wishes.  Cousins, friends of cousins, long lost high school acquaintances, PTA moms and my own children and their friends took a minute out of their day to make a little girl smile. You can make this little girl smile too http://www.facebook.com/pages/Abbie-vs-Leukemia/134583173275636

Elise, a host on the show and a friend to me, posted a tweet about a 15 year old girl, Alice.  Alice is terminally ill with cancer and had made a bucket list.  One of her wishes was to trend on Twitter.  No easy task,  we could not even get #Autism trending on Autism awareness day. I retweeted the post and moved on.

With all the stigma, bias and cruelty in the world sometimes we forget to look at the kindness.  The basic goodness in people is underestimated and often overshadowed by the bad.  The little acts of kindness that touch other people.  The click of a button that puts a smile on a sick child's face.  Those are the things that make a difference in this world.

As I sit on my deck pondering this day I see how it unfolded just as it should, Abbie has posts and messages of love along with a special little birthday gift on the way.

#AliceBucketList is trending on Twitter.  The twitterverse, as it always does, showed what it's all about.

Sometimes it is not the moving of mountains that have the greatest impact on others but the little acts of kindness.

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

The Silence is Deafening

The organic basis of anxiety disorders in children and adolescents, this has become my focus.

I have spent a lot of time reading, researching and interviewing on this subject.

A few months ago I was approached about contributing to an advocacy book for special needs children. When I first decided to take this project on I had no idea what to expect. I had no idea what direction it would take me in or what if anything I would contribute.

It started with a few articles I had written that were read and picked up by bloggers and special needs websites. Soon, I began meeting a lot of people that were very passionate about these children and the struggles of their families. They are an eclectic group with different perspectives and theories on the causes of emotional disorders in children. Some have directed their focus on the environmental impact such as food additives, pollution and poor diet and exercise. Others have focused on vaccines and their role in autism. Videos games, music videos and present day stress is considered in learning disabilities. The genetic component is universally accepted. All have done their research and have educated themselves and others on the possible cause of this dysregulation in children. I believe there is validity in all.

I remain steadfast in my belief that some, not all, of these children's disorders are secondary to a primary medical condition. I began networking in many different venues to seek out parents, caregivers, nurses, adults who had been diagnosed with anxiety or depression as children as well as mental healthcare providers. The response was overwhelming. Within the first week I received over 80 responses to my request for people to be interviewed. I have spent weeks emailing and screening the responses.

To my surprise, I have had a tremendous response from psychologists, psychiatrists and otherhealthcare professionals. The internet has been an amazing tool for them to share their findings, research articles, case studies and opinions with me. Daily communication through text messaging and social media forums has been invaluable.

What became a striking similarity to me was the fact that none of the parents or adults I have been in communication with were given a thorough medical evaluation before being diagnosed and treated. A routine check-up and often times a blood panel to check liver and kidney function was performed but nothing further. Although a neurological evaluation was sometimes recommended, not one of the people I have spoken with were referred for an endocrine evaluation. It is important to add that the majority of people I have spoken with have either Cushing's Syndrome, Polycystic Ovarian Syndrome or another endocrine disorder. One out of every ten women has PCOS. Eighty percent of woman with PCOS have now or had as a child, some form of anxiety or depression. That is a very large population.

A week ago I decided to ask the mental healthcare providers I have been communicating with to let me know what type of endocrine testing they have recommended for the girls they treat for anxiety related illnesses.

I have not received one response.

Sometimes silence is deafening.