An interesting sports observation

1. The sport of choice for the urban poor is BASKETBALL. 

2 The sport of choice for maintenance level employees is BOWLING. 


3 The sport of choice for front-line workers is FOOTBALL. 


4 The sport of choice for supervisors is BASEBALL. 


5 The sport of choice for middle management is TENNIS.

And.... 


6 The sport of choice for corporate executives and officers is GOLF. 


THE AMAZING CONCLUSION: 



The higher you go in the corporate structure, the smaller your balls become. There must be a ton of people in Washington playing marbles.

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 Diagnosis – Digging Out Of The Trenches

The Diagnosis – Digging Out Of  The Trenches

Receiving a diagnosis is often times both a devastation and a relief for parents.  The devastation comes in the form of a reality no parent wants to experience.  That kick in the stomach and feeling of panic that can shake you to the core.  The relief comes in the form of confirmation, confirmation that what you had suspected is in fact now a “label” or diagnosis and affirms your self doubt.  Parents know when something is not right and having a diagnosis can give the parent much needed direction and focus. Getting to that first diagnosis is sometimes a journey in itself.  There is often insecurity, confusion and differences of professional opinion.  Go with your gut, even first time parents know when something is amiss.   If you feel your child is not being evaluated properly it is your right as the parent to ask for further consultations.  On the other hand, there are times when the parents are not aware of developmental delays or behavioral red flags which is why parents need to be approachable if teachers, pediatricians or experienced adults suggest there may be a problem.  Putting off an evaluation or that discussion with your pediatrician is a mistake.  All the current data shows that early intervention is key to successful treatment.

The journey of a special needs parent is not an easy one.  There are lots of twists and turns and unraveling to be done.  It takes time, sometimes years of adjusting and refocusing your direction of treatment and choice of medical professionals. Keep in mind that often with young children the diagnosis may change as time goes on and many disorders are complicated with comorbidity or wax and wane adding to the confusion.  The first months and years are, I think, the most difficult and parents need to start constructing a lifestyle that will allow them the much needed time to research, become educated and seek the best opinions and treatments available for their child. Isolation is another concern for newly diagnosed special needs parents as the world suddenly seems overwhelming and foreign to them.  Finding support and a friendly ear is very important. 

Parents are at times at odds about receiving or accepting a diagnosis.  Parents who are not on the same page struggle.  Marriages are affected, siblings are affected and the special needs child becomes the center of controversy.  Being on the same page is very important.  There will be important decisions to be made, medication decisions,  traditional or alternative approaches, choices of physicians to be on your medical team and many others.  The primary care giver needs support.  Both parents need to understand the stress the disorder puts on the other and offer empathy.  Even the strongest of people at times need help coping and sorting out their emotions. Getting therapy for yourself or your marriage is not a sign of weakness, it is a sign of understanding the gravity of the situation and building a united – solid foundation.  Single parents have my heart.  Single parenting a special needs child is one of the hardest jobs on earth.  Finding support through family, friends and community resources is vital.

Accepting the diagnosis is one thing, accepting the life it brings is completely different.  I call it the Life Unexpected.  I think accepting “truly accepting” the life you will now have is key to progress and success.  Of course we want to fix our children, we want to cure our children we want to make them whole and take away their emotional and physical pain but often times that is just not possible.  Despite our best efforts, we cannot fix them, we cannot cure them.   The best many of us can do is manage, treat, teach skills and accept not only the diagnosis but the effect the diagnosis will have on all our children, our marriage, our child’s education, our friends and family members and most of all our expectations of what our lives would be.

 A diagnosis of autism or mental illness is devastating and of course different levels of impairment bring very different challenges but, it is what you have been given.  It is up to you to take the unexpected and move forward –not just move forward -  surge forward.  You need to find that determination to do what you have to do.  You need to go through many stages to get to your resolve.  This determination is not just for your special needs child but for your whole family.  The domino affect of an unstable situation can take hold quickly.  Will you make mistakes, absolutely, sometimes big mistakes, I have, but you will keep going.  You will forgive yourself, know you are doing the best you can and move on never giving up hope.

To accept the “label” or diagnosis your child is given is often the easy part.  Accepting that your life will be different, that your priorities will be different, that YOU are now different and knowing it will be alright – that is acceptance.  Why is acceptance so important?  Because this is a life long journey – the sooner you truly accept it, the easier the trip. 

I think that one of the most important aspects of acceptance is sense of self you project on the child. I think it sends a strong message to the child when we are always looking for that cure or that fix that they are defective.   Many children report feeling defective and shame.  Feeling defective is one of the most reported feelings among special needs children and adults when discussing their childhood. Parents need to be careful to not add to that.  Taking your child from doctor to doctor and therapy to therapy sends a message.  Unfortunately, I think it is unavoidable but attention needs to be taken.  Am I saying to not seek the best possible treatments?  Absolutely not.  Am I saying to limit therapies that are helping - Absolutely not.  I think parents should never never never give up – keep digging – keep searching – keep researching – being  persistant and sometimes going with your instincts pay off and pay off big time.  But choose your words carefully around your child as to not add to their feeling damaged – that is a heavy load for a child to carry.   My experience has been that discussing the child’s positives can outweigh the negatives they are feeling so make sure that your child knows they are great – great at anything – great at something – great in your eyes.

Being a special needs parent is not for sissy’s.  This is no time to be intimidated or shy.  You are your childs best advocate – you make the final medication and treatment decisions – you know your child – you observe improvements and regressions. You can interview pediatric or specialty practices to find the right fit – we did - you need to take control – research and become educated.

If I had to say the number one thing for any newly diagnosed parent to do it is this -  JOURNAL  JOURNAL JOURNAL it is an absolute must.  You are now your childs medical historian, the keeper of all records and observations that you will need, and often forget during chaotic times, to report to your medical team.   Even a spiral notebook with a daily one or two sentence writing about what you are seeing will do. 

As I’ve written previously as in the case of anxiety and depressive disorders – ‘Mental illness its not all in your head”  sometimes, not always but sometimes, there is an organic basis for anxiety disorders in children and adolescents and turning no stone unturned can open the door to “out of the box” thinking that can bring effective treatments.   Doing so can lead you to many different specialists neurologists, developmental pediatricians, cardiologists even endocrinologists (who I feel are key for females w anxiety disorders and other signs of endocrine disease) and a full blood panel work up should be done before any medications or treatments are started.  It is a lot of work, a lot of pressure but when it pays off, it really pays off. Putting together a team that will work together for your child will make all the difference in the world.

Understanding how a diagnosis of  Autism or Mental Illness is derived is important for parents to understand as well.  The DSM right now is not a friend of parents with children with mental illness in my opinion. Sensory issues are not criteria for autism which is a major omission – adult criteria is used for children with bipolar disorder when most children and teens do not present with clear episodes of mania and depression as do adults but are more chronic in nature with agitation, temper tantrums, rigidity and low frustration tolerance making the DSM criteria useless in diagnosing the majority of children with this mood disorder and temper disregulation. For the majority of  kids true bipolar disorder is very rare. The updated DSM-V  is under revision with much debate about Autism and Bipolar disorders and the possible addition of TDD Temper Dysregulation Disorder with Dysphoria which I personally do not want to see. I think it has a very negative connotation and will add to the stigma.  I do agree that additional diagnosis need to be added to account for this large population of children with mood and chronic agitation and hope that new gains being made in research are considered in the added criteria and labels.   In the end the DSM is needed for medical insurance coding and for diagnosis for school accommodations, which by the way is very important, but as far as treatment, I think it is not a useful tool.  Parents need to treat the symptoms not the diagnosis.  A child with a diagnosis of ADHD that rages using stimulants should not be treated with stimulants because it is the drug approved for ADHD as an example.  The DSM is used to classify and diagnose mental illness but is antiquated and will be getting a revised edition in 2012.  A little DSM history – the first DSM was published in 1953 with only 66 disorders, 1968 second edition with 100 disorders, 1979 totally revamped with multi axial system of coding and upgrades, 1994 was the last revision with 400 disorders.  It is long overdue and greatly anticipated. I am doing some very important interviews on my Blog Talk Radio show for The Coffee Klatch to make sure parents are aware of the significance and changes proposed.

So how do we get there?  How do we dig out of the trenches? How do we get to that diagnosis and the acceptance of it?  Stages vary among all parents but the isolation – anger – resentment - sadness even guilt seems to be universal.  Everyone will experience it differently but I think parents need to feel it – it is painful to see your child suffer – it is important to acknowledge that pain for your child and for yourself.   Often people comment on how myself and other moderators on The Coffee Klatch are so confident and  strong.  Guess what – we didn’t start this way – it was a process – it was done in stages – we have all been there, we have all dug out – some days it seems we are still digging.

So have your pity party – have a good cry – You deserve it - then pick yourself up and brush yourself off – you have a lot of work to do.  As difficult as this journey is – in the end you will know unconditional love and the true meaning of a purpose in life that most could never imagine.  This experience will change you – it is up to you whether it changes you for the better.

I wish you much luck, strength and calm.

My interview on "The Family Coach" with Dr Lynn Kenney "Accepting The Diagnosis" Part 2
http://alturl.com/5m3b8

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.