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

Understanding and Surviving Your Defiant Child

It begins with the mindset.


If in your mind your child or teen is trying to control you, your home, your family, your life, I truly believe you are losing the battle.

If in your mind your child or teen is trying to gain control of his or her life, is struggling to interpret their world, is feeling overwhelmed due to lack of acquired reasoning skills or deficits in communication, well, now you’re talking.


Looking at the behaviors with a different set of eyes sometimes leads to out of the box thinking and problem solving.  Try starting with the belief that behind every behavior is a cause, a reason and try to identify what that trigger is.  Do not assume that your child does not want to be cooperative try instead to assume they don't have the tools to think on that level or to collaborate in problem solving.

Do you see your child as an under achiever?  Do you see your child as being lazy, immature, stubborn, unmotivated?  Do you see your child's behaviors as a burden on your family?

Remember the eyes are the window to the soul and they mirror our feelings and emotions.  Chances are if its in your eyes it's also in their view. Negativity breeds negativity so if what you are doing is not working try to turn it around.  See them with a different set of eyes.


No child wants to fail.  No child wants to struggle in school, at home, with friends and in life.  They just don't , as Dr Ross Greene says "If they could they would".  I think many times these negative behaviors are a defense mechanism to keep the world from seeing how much they are struggling.  The behaviors are a bravado to hide their pain.


Dealing with a raging, defiant, cursing, threatening, hostile, nasty, dark, violent, incorrigible child is horrible.  It is absolutely exhausting and one of the hardest things parents of children with mental illness or poor regulation will ever have to deal with.  It is so explosive in nature.  It can be so random and unexpected and yet predictable and unavoidable.  It takes every ounce of restraint not to lose it at times.  As absolutely draining and painful as it is to deal with these kids - imagine being that kid.

Imagine being that out of control.  Imagine being afraid of your own actions.  Imagine being disoriented and confused either during a rage or afterwards.  Imagine feeling like a failure everywhere you go.  Imagine having no friends.  Imagine hurting people you love and having no way of stopping it.  Imagine being in that much pain.
As horrible as it is for the parent, imagine how terrifying it is for the out of control child or teen.


I know, you are reading this and saying ,well he/she doesn't look terrified or afraid.  To that I say look a little deeper.  Start from scratch and reassess the situation.  What the hell - what you are doing now isn't working or you wouldn't be reading this so what do you have to lose?


Without going into a long drawn out explanation let's just start with the understanding that there is a physical as well as emotional change that occurs during these rages or behaviors, flight or fight as most people call it.  The adrenalin is pumping that cortisol is rising and you have a chemically hormonally imbalanced mess on your hands.  Everything is distorted and amplified its like a Mack truck is coming right at them. Everything around them seems like danger and a threat. Ill show my age here by saying it reminds me of Lost in Space the television show "danger danger" for Will Robinson.  I digress. The key is to head off that chemical pituitary adrenal response before it hits because once its started - watch out!


Take a look at your expectations, are you setting the bar too high?  Is the child impaired and struggling to the point that for a while, whether short term or a bit longer perhaps expectations should be dropped completely?  Often when kids are this out of control and in a chronic state of chaos they need to calm and regulate.  It's not the time for demands but the time for fostering a calming state to regulate the physical and emotional kid.

Go back to the beginning, put on your detectives cap and start looking for causes of the childs frustration.  Mental illness is an umbrella for the reason many of these kids are so severely impaired but underlying are the triggers and causes that exacerbate the behaviors.  Many of these kids have overlapping issues or disorders so leave no stone unturned.  Look into any sensory issues - look into learning disabilities - look into organic basis such as endocrine or other health causes - look into hearing problems - vision problems - neurological problems - the list goes on and on.  Medications can cause slight to severe side effects check if a new med be involved? Is it Anxiety based? Anxiety and social phobia are horrible and very real in children.  Anxiety in children and teens is under recognized, unaddressed and often not validated but merely chalked up to teen "drama". This just creates even more anxiety and embarrassment.  It is a daunting task to unravel but when you find that needle in the haystack it is well worth it.


Consider social deficits as not all kids acquire social skills naturally.  Is your child being bullied or singled out by another child or a teacher?  Is your child misunderstood and labeled a bad kid, the weird kid, the loner?  Is your kid always getting detention, punishments or having things taken away.  Maybe, just maybe, your child is being beaten down by the world they live in.Unintentionally but inadvertently their world is spinning out of control and their self image and self esteem is shot.


Pushing these kids down further into the abyss does not work.  Negatives do not work.  Punishments and limit settings do not work.


Raise these kids back up.  Finding what they are good at and focusing on that, giving them a sense of pride and accomplishment, having their back and advocating for the positives in these kids is the way to start. To be clear, I'm not talking about enabling bad behavior here that is another blog all together.  Im talking about acknowledging the negatives, addressing the negatives but focusing on the positives.

Looking at it, no matter what age, like teaching skills to a baby.  You teach them one at a time, in this case usually in order of importance.  Break the behaviors or issues down specifically sometimes even broken down into several segments for the same issue. You do not need to telegraph that you are working on these issues with a defiant child, do it in a subtle way and let them feel the empowerment of succeeding. Instead of pointing out when they get it wrong point out when they get it right. You cannot fix all issues at one time, take behaviors one at a time until mastered or significant improvement is made then move on to the next.


Be a role model - a human role model with human flaws.  When you make a mistake or hurt someone apologize.  When you are stressed out and frustrated say so and let your kids see how you manage stress in an appropriate way.  When frustrations and disappointments happen in your life, if appropriate, let them see that life has its ups and downs and how to pick up and move on. Be an obstacle mover in your life and in theirs.


As I started this blog..... It begins with the mindset.  It also ends with the mindset.


Next time your child or teen is raging and out of control, the next time they are cursing and having a melt down.... step back..... take a breath..... do not react.   Walk away if you have to but make your mindset compassion.  Realize that this is the WORST possible time to communicate your expectations or to have any kind of meeting of the minds. This is the WORST possible time to lay down your parental authority. This is the time to model behavior by staying calm and speaking calmly.  It is not the time to argue your point whether you are right or wrong. It is not a time of rational thinking.  It is the time to let this struggling kid know you "get them".  It is the time to say "I'm sorry you are having such a hard time"  "I see you are really struggling - Im sorry you are hurting"  "Maybe we can find a way to work together to solve this"  "I love you"  I know..... It is hard, very hard.  When you have a spitting mad verbally or physically abusive kid in your face it is the last thing you want to say but you need to break the pattern and build trust.

If you over react they will come right back at you.  If you are calm and reasonable sooner or later - yeah I know sooner or later is usually not soon enough - they will begin to see that they can trust you to be calm, collaborative and ACCEPT them.


The less you talk the more you will have to listen and when listening with compassionate and new ears you just may hear where all this anger and pain is coming from.  By listening and asking them what they are feeling and not TELLING them or assuming what they are feeling, you are giving them the best gift a parent can give by teaching them the skill to communicate and work together to compromise and problem solve. You are teaching them how to communicate their feelings and frustrations in an appropriate and productive way.

I think ultimately, and equally important is to give our kids the tools to self calm and regulate.  This is a really frustrating world and when combined with a disorder or situational circumstance they need to learn to calm and reason.  In order to learn those skills they need to know how "THEY" calm.  Teaching them breathing and muscle relaxation when they are in a calm state is great but I really feel that everyone finds their own way to calm.  Get your child to a place in themselves to identify how they calm, be it with music, video games, running, climbing, pacing, reading help your child or teen find their calm.  Yes I said video games, I don't really care what it is as long as it is safe and not harmful to anyone else.  They need to find their own way. It is not so much the action that is important but the way they will learn the feeling of calming and the benefit of self relief of the escape from the anxiety.   It is not only needed now when you are ready to jump out a window but it is what they will need to live a productive and happy life long after these adolescent years are gone.


Sometimes giving control and teaching control puts you in the drivers seat. 

The Catch 22 And Your Mentally Ill Teen

Parents of children with mental illness have it hard, really hard.  Diagnosing, treating and managing a mental illness in a youg child is one of the most difficult responsibilities a parent can encounter.  Parents and families are thrown into a world of confusion, chaos and often despair.  Unraveling what you have is a daunting task.  These disorders of the brain are often met with much comorbidity but are also very dimensional each on their own.  Over time many of the presentations change and it could take years to see what you are truly dealing with.  With maturity of communication and self awareness some of these children eventually are able to participate in targeting the origin of the symptoms and become collaborative in their treatment.

For some, despite all efforts, the teen years pass by in a blurred flurry of  disregulation, outbursts, suicidal thoughts or attempts, self harm, dangerous or promiscuous behaviors, treatment resistant mania, psychotic features,  phobias, panic attacks, impulsive or reckless actions and most significantly unbearable pain. 

Multiple hospitalizations are not uncommon.  Multiple psychiatrists, therapists and residential treatment programs are not uncommon.  Navigating a children’s mental healthcare system that is broken leaves these families is financial and emotional ruin.

Even parents who have been fortunate enough to find a treatment to manage the disorder often find as the teen becomes more independent that noncompliance can undo years of progress.  As the child reaches his latter teen years, noncompliance with medications and therapies becomes a source of concern.  

In addition, teens that may have had minor levels of impairment with depression or anxiety find as the pressures of impending independence and often the use of street drugs or alcohol come into play, the disorders worsen dramatically leaving parents scrambling for control.  Instead of now dealing with trying to manage a mental illness they are now in the world of duel diagnosis and the walls are closing in on them.  

Some parents simply cannot take the pressure.  They are hopeless and as I mentioned earlier, are trying to fix a child or teen with a broken system.  The years of abuse by the teen, the years of chronic stress, worry and exhaustion take hold and they throw their hands in the air and give up.  Many of these teens wind up in the hands of the state and in state run facilities, it is a horrific situation for all.

“The mental-health-care ‘system’ in America is a broken system,” says Michael Fitzpatrick, executive director of the National Alliance on Mental Illness (NAMI). “The system was already in crisis, and has become even less accessible over the last three years as state budgets for mental health—psychiatric beds [in hospitals], counseling, and other services—have been cut by $2 billion. States have eliminated 4,000 in-patient psychiatric beds.” NAMI’s Katrina Gay adds, “In many cases you can’t even get an evaluation for two to three months—and that’s assuming you know how to get one in the first place.”

Some parents hope and pray as the teen matures they will outgrow the behaviors.  They put their faith in the day that the teen will finally break down and accept the help they need.   As they wait for that day they take every measure to keep the teen safe, walk on egg shells to keep the peace, construct a life around the devastation and often need to forgo expectations of limit setting, curfews and any remnant of a normal life.  These are good parents.  These are parents that like the rest of us do not have $75,000 to $100,000 a year to place their teen in a safe quality private therapeutic residential treatment program.   These are the parents that have tried to find help for their mentally ill child and tween using their health insurance coverage only to find very short term and ineffective programs available. These are parents that unknowingly are on the brink of a situation that will shake them to the core.  The situation they hoped and prayed maturity of age would resolve…. The loss of parental control and the age of majority.

The age of majority is the threshold of adulthood as it is conceptualized  in law.  The age of majority or the age a child is considered an adult varies by state and country.  In the US the age is usually 18. It is the chronological moment when minors cease to legally be considered children and assume control over their persons, actions, and decisions, thereby terminating the legal control and legal responsibilities of their parents or guardian over and for them. The word majority here refers to having greater years and being of full age; it is opposed to minority, the state of being a minor. The law in a given jurisdiction may never actually use the term "age of majority" and the term thereby refers to a collection of laws bestowing the status of adulthood. The age of majority is a legally fixed age, concept, or statutory principle, which may differ depending on the jurisdiction, and may not necessarily correspond to actual mental or physical maturity of an individual. It is the age a person is allowed to enter into a legal contract and control who has access to their medical and legal information.

In the event of an emergency hospitalization this can be very difficult for parents trying to get information on the reason and plan of treatment for their older teen.

The time to make decisions for your child is now gone without legal action and a court decision of continued guardianship must be obtained if the now adult is unwilling to have a parent participate.  Often the treating psychiatrist can persuade the adult child to accept help from parents but due to instability or destroyed relationships due to the disorders they cannot.

Parents are often put in a very difficult position when seeking information about a loved one with mental illness who is being treated by a mental health provider. Legally adult children with mental illness have the right to decide with whom their clinical information can be shared, and many times this is difficult for parents to understand when they genuinely want to help their child in his or her recovery and yet are told they cannot receive any information about him or her. However, in most circumstances (not all) providers are legally obligated to honor the wishes of a patient who withholds permission to make disclosures to family members.

There are limited cases of how a parent can receive information without consent.  The Director of a State operated psychiatric center is required by law to inform the parents of an involuntary-status patient of the fact that their relative has been involuntarily hospitalized, and must further advise the family where the relative has been hospitalized.This disclosure remains permissible under HIPAA because it is required by New York State Mental Hygiene Law.  Without express objection by the patient (who must be informed ahead of time) or compelling evidence that it would be counter-therapeutic, the family of a voluntary-status patient may be informed of the fact that their child has been hospitalized and where he/she is. In this case, information can also be obtained from the parent in order to obtain facts about the patient that are necessary for his/her treatment.

Even when parents are unable to obtain permission to receive information about their relative, this does not always mean they are barred by confidentiality laws from participating in treatment planning for the patient. In fact, unless it is plainly contraindicated, the New York State Mental Hygiene Law not only allows but requires the involvement of an authorized representative of the patient (which can include parents) in treatment planning, because it is presumed that such involvement has important therapeutic benefits. When done in such a way as to not compromise or reveal information that should be kept confidential, parens involvement can be accomplished without obtaining the express permission of the child and without violating confidentiality. For example, staff could discuss the programs that are available, privileges, family visits, legal status, and plans for discharge. Also, if not clinically contraindicated and appropriate, staff could share information provided by the parents with the patient, such as relaying messages of support.   Being in a psychiatric hospital is not pleasant, it can be very traumatizing and often teens soon seek the support of parents and allow them participate.  As hard as it is for parents for the teen it is absolutely devastating.

Having your 18 year old or legally adult child sign a HIPPA consent release or legal documentation such as a health care proxy giving parents access to information and decision making power for them is essential and can in some cases ward off a lot of problems.  In the event the now adult child will not allow information to be shared or will not agree to hospitalization to stabilize parents are often forced to take legal action to regain control in the capacity of a guardian or conservator.

What is the difference between a Guardian and Conservator?

A Guardian acts in behalf of the disabled person in personal matters. If appointed under the Mental Health Code, a guardian may also manage all of the disabled person's finances and property. In those cases of disability where the Mental Health Code does not apply, a conservator will be appointed to be responsible for such person's financial affairs. If both a guardian and a conservator are necessary, they need not be the same person. The judge must decide whether or not the person in question has a mental, physical or legal limitation which requires the judge to appoint a guardian to make decisions concerning the person's health and personal life or appoint a conservator to make responsible decisions concerning management of property and money.

A good resource for understanding the guardianship law and procedure is here http://www.zalkinlaw.com/pdf/guide_to_guardianships.pdf

Hoping, wishing and praying are wonderful, it keeps the faith and gives us some peace but realistically, if you have a severely mentally ill child.  If your depressed or mentally ill teen child is a risk to themselves or others, plan ahead.  Speak with the treating physician about their upcoming age of majority and or your lawyer about estate planning to ensure care for your adult child should you not be here and also discuss your options in the event of a period of severe mental instability.   Being informed is the best way to deal with the situation should it arise.

Any parent with a child with a mental illness knows being proactive is everything.  There is no more important proactive step you can take with your teen than to ensure their safety in the event they are not capable of making life saving decisions. 

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. 

The Medication Roller Coaster

The Medication Rollercoaster –Updated Version

The Medication Rollercoaster – Original publishing 1/1o

Let me start by saying I am not a doctor or a medical professional – I am a mom – a mom who has been there.
The decision to medicate your child is a very personal and heart wrenching one for many parents.
Whether the child has a mental illness or a physical one the stress and anxiety is the same.The difference is in the stigma. Would you give your child insulin if diabetic, chemo for cancer, anticonvulsants for epilepsy? Of course you would. What many people do not understand is that mental illness can be fatal. It can be severe and debilitating.
Does your child have a physical illness that requires medication? Do you lay awake at night worrying about the side effects?

Medicating a child is tough. It is draining and takes an informed, observant and stable parent to monitor.

I will discuss it all on The Coffee Klatch  and will provide resources to help you gain some control over the stress involved with medicating a child.

Here is an outline of the topics we will be discussing in detail on the show:

First thing any parent should do is google a drug interaction checker and bookmark it. I use http://www.drugs.com/drug_interactions.html

Second thing any parent should do – buy a journal – journal every day several times a day if needed

Write down the medication - generic or brand - dosage - dates increased or decreased - reactions and side effects

You are your childs medical historian – be accurate and be consistent – it is amazing what we forget under stress

With possible medication trial and errors it is important to have a record for yourself and the doctor

Do your homework – when discussing medications with your childs doctor ask about all possible side effects

Discuss titrating and weaning. Discuss test dosing. Discuss doctors availability in event of a problem

Discuss blood work prior and during medication use – discuss heart or other pre-required testing

Discuss what is considered an ample period of time to decide if the medication is helping

Discuss your feelings and anxieties about medicating the child – do not be intimidated or pressured

Discuss the fact that you will have to do some research on the medication and make an informed decision.

If your childs doctor is pressured for time let him know that you will come back to discuss the issue

If your childs doctor does not provide you with the time – get a new doctor.

Titrating – when starting a child on a medication here is the golden rule – START LOW AND GO SLOW

Make sure that the pill or capsule that your child is taking is not time released and can be split before breaking

If the pill is time released see if there is a standard form of the drug to use for a day or two as a test

Having a bad reaction to a med is horrible – better it be six hours than 24 or more

Purchase a pill splitter they can be found at any pharmacy

Purchase a weekly pill box – yup like the old ladies have – this will help you remember if you gave it or not

Always keep a few pills in your purse – in the event that you are out at medication time

Although many medications have therapeutic levels there is no harm in starting low and going slow to get there…..

That is of course unless there is an acute life threatening crisis

Weaning off medications – take it even slower especially with antidepressant meds. Never stop antidepressant meds suddenly if they have been on board for a while

Some children especially those with PDD and other autistic features tend to be micro-responders.

I have found many drs tell you to increase the meds during exacerbations, I have found the opposite.

Use your intuition and gut – a moms gut is worth more than people give it credit

During exacerbations Temple Grandin had observed that she needed to lower her medications instead of increase them

All meds are not made the same – be careful of switching to generics or even the other way around

Take note when you switch brands of meds for changes in your child.

Over the counter meds MUST be checked on the interaction checker – MUST – I have provided a resource on FB

Herbs MUST be checked with the interactions checker – also provided resource on FB (including teas)

Many drugs cause vitamin deficiencies – especially stimulants - do your homework

Even if a medication cocktail is inevitable always insist on starting one at a time to not confuse the issue

If your child is on a medication requiring blood level tests – GET THERE – do not say tomorrow

Blood level tests are required for a reason – to check organ functions or to ensure safe levels – GET THERE

Be careful not to let the child get dehydrated as the concentration of the drug can increase

Be careful of grapefruit and other known foods that interact with many drugs also resource provided on FB

If you have a spouse or a partner – get on the same page – if you cannot agree seek consultation.

Always start a new medication on a Saturday if possible so that you can observe the child

If the child needs to take medications at school make an appt with the school nurse – discuss your child

Ensure that the child will be in a comfortable environment and not be embarrassed or stigmatized.

Are the drugs unaffordable for your family – there are programs that can help with providing medications

Call the pharmaceutical company manufacturing the drug to ask for assistance to see if they have a program

Be very very careful with clinical trials – parents get desperate to help their children- remember they are trials.

Don’t be afraid or embarrassed to ask for help yourself. If you are feeling overwhelmed say so.

 Seek out a support group – check out online forums – read parent reviews such as remedyfind.com or healthrevolution.com

Give yourself a break – this is not easy – be pro-active and you will have a lot less to lose sleep over.

So welcome to the medication rollercoaster – it’s gonna be a wild ride. ~Marianne

Update: Summer adjustments – School breaks and trials

Summer break is notoriously a time that parents wait to try to add or remove a medication their child is taking.

Starting up and weaning off medications is tough – very tough. The withdrawal can be severe and going slow is just as important when removing a medication as it is adding. There are several schools of thought regarding summer breaks from medications.Some psychiatrists believe that during the summer months medications for attention, mostly stimulants, can be given a break especially if weight loss has occurred. Others feel that it is like removing glasses from a child that needs them and feel that the stimulants often help with social interactions as well as academic performance and should therefore remain.

Dr Duncan McKinlay renowned psychologist, author of Nix your Tics and creator of the documentary Lifes’ a Twitch” feels that there is a risk to stopping a medication that is working as the child may not have the same positive reaction once restarted. I have heard this from several other professionals as well as parents who have found that the results once had are much lessened when reinstituted.

In the end, it is a parents choice. Being a parents choice does not mean that a child (if old enough and has the ability to self advocate) should not have some say as well. Before making any changes set up an appointment with your childs prescribing physician and discuss the pro’s and con’s. Let your child talk about how the medication makes him/her feel. What symptoms are the most problematic and if they feel improvement or impairment from the medication. As said, ultimately it is the parents decision but having your child participate and understand the changes will only make the rollercoaster ride easier for all. Another positive in having the child participate is that often times what may appear to be one behavior or emotion is really something else and in discussing the pro’s and con’s and targeting symptoms a clearer picture may emerge.

Once referred to as a “medication holiday” is another of the many stressors a parent medicating their child needs to consider carefully. Starting and stopping medications whether for summer break or any other reason is stressful for the child and the parent. The “Honeymoon” period is another term thrown around for the initial period of time that a medication is new to a child system and showing much improvement only to lessen in effect after a few months and there is a need to be adjusted. Keep in mind that an adjustment does not always mean an increase. For many kids, especially those on the spectrum often less is more. Many of these kids are micro-responders and have better results with an eigth of what other children may be able to tolerate.

Above I am speaking of medications that DO NOT stabilize mood as they should never, I repeat, NEVER be removed if a child is stabilized. I am talking about stimulants and other medications not used for depression or mood stability.

For the child who is not finding stability on their “medication cocktail” summer is often the time of trials. Many parents wait for summer, to try different medications so they can monitor closely and give the child time to adjust and go through the physical side effects. It, if an option, is a great idea.

As any parent who has been through the process of starting a medication knows, there are some rough days even with medications that eventually will help and whose side effects will abate. Nausea, lethargy, headaches, body aches, brain fog, cognitive dulling, agitation are just to name a few of the possible side effects that a child may have therefore not having to “perform” in a school setting during a trial is very advantageous.

If you are considering a medication change for your child, if you have been waiting for summer or any other school break, plan carefully. Consider a shorter summer camp or a later start. Give your child the best possible chance to adjust and function through the trial in hopes of giving them a better quality of life.

The title of this writing – “The Medication Rollercoaster” for the rest of this blog is deceiving.

Alternative approaches need to be planned and considered for summer and school breaks as well. Even natural, homeopathic or holistic approaches have side effects and can be draining on a child.

Many parents wait to try an alternative approach and wean their child off medications during the break. This is a great idea. The ten week period gives you enough time to wean off – incorporate vitamins or other therapeutic trials and have time to reintroduce the medications if it is not successful.

DO NOT UNDER ANY CIRCUMSTANCES add any herbal or homeopathic products to medications without speaking to your prescribing doctor and doing your OWN homework as well. Make sure to check your Drug Interaction Checker and check out all possible drug to herb or homeopathy interactions. They are significant and there are many.

Drug herb interaction checker

http://www.prohealth.com/library/showarticle.cfm?libid=13668

Drug – Vitamin depletion chart http://www.pharmacistelink.com/naturalmedicine/pdfs/P4880x1204DrugChart.pdfWishing you all a safe – happy – healthy summer.