The Life Unexpected - Raising A Special Needs Child

An interesting sports observation

2011-08-25T18:34:00.000-07:00

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

2011-06-08T16:37:00.000-07:00

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

2011-05-28T16:50:00.000-07:00

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

2011-05-23T11:26:00.000-07:00

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

2011-05-22T14:41:00.000-07:00

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

2011-05-07T22:35:00.000-07:00

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

2011-03-19T09:42:00.000-07:00

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

2011-01-08T14:38:00.000-08:00

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

2010-09-15T09:47:00.000-07:00

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

2010-05-07T20:05:00.000-07:00

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

2010-04-14T04:34:00.000-07:00

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.

Dancing in The Rain - Learn to let it go

2010-04-10T06:20:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

Life is too short.

Learn to let it go.

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

An Amazing Six Months - Who knew?

2010-03-01T17:14:00.000-08:00

Who knew?

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

Who knew the path this journey would take us on?

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

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

Who knew?

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

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

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

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

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

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

Who knew?

Very grateful

Marianne

Vacuuming -

2010-02-13T14:55:00.000-08:00

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

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

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

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

So, I kept vacuuming.

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

So, I kept vacuuming.

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

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

I think I'll keep vacuuming.

Mental Illness - Its Not All In Your Head

2010-02-13T09:19:00.001-08:00

Many people diagnosed with mental illnesses seek the help of

psychiatrists and other mental health care providers. It seems

the obvious treatment. What many people with depression,

anxiety and phobias, do not do, is seek out consultations to

find a possible medical cause for their symptoms.

There are many endocrine,neurological and cardiac diseases

that present symptoms of depression, anxiety and even

intermittent bouts of rage. Proper treatment of these disorders

can reduce and often times resolve the psychiatric symptoms.

Some patients will benefit from both psychiatric and medical

interventions. This is not to say that every person or child with a

mental illness is misdiagnosed, but many are.

The endocrine system, is a complex group of glands. These

glands make hormones which help to control activities in

your body. Along with growth, metabolism,reproduction and

development, hormones control the way you respond to your

surroundings. Diseases that alter the hypothalamic

-pituitary-axis may produce anxiety-like states. It important

to differentiate between medically induced and primary

anxiety disorders. Treatment with psychotropic medications

alone may not significantly improve the emotional symptoms

and may, in some cases, contribute to the hormonal

imbalances.

Anxiety frequently occurs in endocrine patients with adrenal

dysfunction, Cushing's Disease, Carcinoid syndrome,

hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia,

hyperinsulinemia, pancreatic tumors, pheochromocytoma and

thyroid diseases including hyperthyroidism, hypothyroidism

and thyroiditis. These diseases can be the organic basis for

an anxiety disorder and with proper diagnosis and

treatment can improve the quality of life of many

anxiety sufferers.

Psychoneuroendocrinology: The Scientific Basis of Clinical Practice

Polycystic Ovarian Syndrome is another very common

endocrine disorder which, in a large percentage of patients,

causes anxiety and depressive states. PCOS is caused by

irregular levels of estrogen, progesterone and testosterone.

It is estimated that 1 in 10 women have PCOS. Women with

PCOS may suffer from acne, excessive hair growth, loss of

hair, infertility, loss of menses, diabetes and weight gain.

Some data reports that almost 80% of these woman

suffer from anxiety, depression and other mood disorders.

Treatment with birth control pills as well as medications to

regulate insulin along with proper diet and exercise can

significantly improve the physical and emotional

symptoms of this syndrome.

Along the way you may have what is referred to as an

incidental finding. These unanticipated findings in the

course of testing or medical care can hold they key to

some anxious states. An incidentaloma is a tumor (-oma)

found by coincidence (incidental) without clinical

symptoms or suspicion. In our case it was a pituitary tumor,

a microadenoma. Cushings Syndrome -an endocrine disease

known to cause anxiety and phobic states -is suspected, as well

as Polycystic Ovarian Syndrome.

Although I have primarily focused on the endocrine -

anxiety connection, the list of diseases, disorders, syndromes,

and medications that can contribute to or cause anxiety and

depression is significant.

Treating depressive and anxiety disorders, in some cases,

needs to be a joint effort with a team of psychiatric as well

as specializing physicians working in harmony.

It has been my experience as a parent of a child with a

severe anxiety disorder,that what you see is not always what

you get. Proper diagnosis is the key. Finding the origin of a

mental illness is often like finding a needle in a haystack.

It took seven years and four endocrinologists before the

proper treatment was initiated, a lot of time lost.

Article: http://www.aolhealth.com/condition-center/chronic-pain/autoimmune-diseases-symptoms?icid=main|main|dl3|link5|http%3A%2F%2Fwww.aolhealth.com%2Fcondition-center%2Fchronic-pain%2Fautoimmune-diseases-symptoms

References:

http://www.drrichardhall.com/anxiety.htm

The Silence is Deafening

2010-02-13T09:18:00.001-08:00

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

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

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

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

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

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

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

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

I have not received one response.

Sometimes silence is deafening.

The Isolation of Families With Mental Illness

2010-02-13T09:17:00.001-08:00

I can't think of anything more painful or more heart wrenching than that of the day to day life of a parent of a child with a serious mental illness. This is not to diminish the pain of parents of children with medical illnesses or of parents who have lost a child, but it is different. The isolation is palpable. The acceptance and sympathy is not universal. There is still, in this day and age, shame and the perception of failure. Yes, there are wonderful support groups and caring and knowledgeable doctors, but at the end of the day parents of children with mental illness are alone. Marriages are tested, siblings are adversely affected and families are held hostage by the disorders. Life becomes a constant calendar of doctor, psychiatrist and therapy appointments. Many families find themselves in financial ruin.

It seems there is always one step forward and two steps back. There is the medication roller coaster which once on, seems impossible to get off. There is the guilt and sleepless nights worrying if the decision to medicate is the right one and what the side effects may be, not only now, but in the future.

Here is an article posted today in the Los Angeles Times

Parents Cope With Schizophrenic Child

Mentioned in this article is the lack of services available for these children and their parents. Respite care is not offered, long term hospitalization is not offered and many specializing psychiatrists do not take insurance. It truly is a sad state of affairs when our healthcare system cannot accommodate these children and their families.

Having a child with a mental illness is a challenging and difficult experience. It takes a strong and special parent to deal with the daily uncertainty.

Being the parent of a child with a mental illness can also be the most rewarding and life altering. Little successes become major triumphs. Priorities become clear. Parents develop a bond that most spouses will never know. There is true understanding of unconditional love. And when the war is won, there is no better victory.

The road for these families is long but the reward at the end is great.

Prenatal Stress and The Inception of Childhood Anxiety

2010-02-13T09:15:00.000-08:00

Can prenatal stress cause anxiety disorders in offspring?

Recent studies show it can:

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

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

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

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

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

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

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

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

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

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

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

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

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

Effects of antenatal stress and anxiety

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

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

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

I believe it can.

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

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

Medical Historian Key Role in Parenting A Special Needs Child

2010-02-13T09:13:00.001-08:00

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

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

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

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

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

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

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

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

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

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

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

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

Autism Awareness Month - were you aware?

2010-01-21T14:48:00.000-08:00

This month of April has been Autism Awareness Month.

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

The above, of course, was the sweet.

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

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

Why?

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

What differentiates the two? Unity.

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

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

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

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

The divide lies in your belief

Neurodiversity

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

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

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

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

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

The "Cure"

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

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

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

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

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

And lastly,

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

Excerpts from a wonderful article by Spencer Hatton:

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

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

I know. I was one of those parents".

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

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

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

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

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

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

It's time.

A Vengeful Punitive God????

2010-01-19T05:50:00.000-08:00

Bob Marshall (House of Delegates, VA) is an idiot. Here is his statement "“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,” said Marshall, a Republican.

What about all the disabled children who's mothers never had an abortion????

Let me think about this A) God is a vengeful punitive being that inflicts suffering on innocent children - probably not B) God chooses these special children to give to special mothers - possibly C) God has NOTHING to do with it - most likely.

Tourette's Uncovered on Discovery Health - Outstanding

2010-01-11T19:20:00.000-08:00

I was given the privilege of previewing an upcoming documentary to be shown on The Discovery Health channel for an interview I will be conducting with Jaylen and Robin Arnold and Dash Mihok who are profiled on the program. The interview will be on our Blog Talk Radio Sunday 9pm est. The Coffee Klatch will also be participating in a tweetchat being conducted by The Discovery Health Channel on Monday night at 9pm simultaneous with the premiere of the show.

"Tourette's Uncovered" Outstanding. Absolutely outstanding. As a special needs parent, to watch these children and parents dealing with a severe form of this disorder was heart wrenching. The sadness, pain and fear crept back instantly. I can think of no other disorder as mystifying and misunderstood. Tourette's is often thought of as the cursing disease and although some do have coprolalia, MOST do not, actually it is only a small percentage. Although thought rare, one in one thousand children will be diagnosed with Tourette Syndrome every year at various degrees. Co-morbidity with other disorders primarily Obsessive Compulsive Disorder, ADHD, Rage attacks and Sensory disorders complicate and often times cause even more distress than the tics themselves.

The unforgivable bullying and humorous connotations associated with Tourette's Syndrome only add to the pain and suffering of these children and adults. Jaylen has created a campaign - Bullying No Way - and is a hero. Truly a hero. What strikes me most about all of the four children profiled in this documentary is the power of their ability to self advocate. Their insight into themselves, their humility and their bravery is astounding.

There is no possible way for anyone to understand the torment to child and parent unless you are living with it but this documentary offers a window into the lives of these families. As with so many other special needs families, emotional and financial tolls are taken and unimaginable choices must be made. Families are put in situations where they must choose medications with horrific side effects that have minimal effect on the disorder and in the most extreme cases, Deep Brain Stimulation surgery at a personal expense to the family of $125,000.

This documentary brings you into the lives of four families each dealing with the disorder in their own way, choosing their own treatments, educational options and giving a face and a reality to the disorder.

For those not familiar with Tourette Syndrome, you will be educated. For those affected by Tourette Syndrome you will be given hope - respect and a purpose. As I say all the time, with education will come compassion - it's time.

Tourette's Uncovered 9pm est The Discovery Health Channel

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2009-05-13T09:14:00.000-07:00

Forget those dating services. Forget those friend finder support groups. Don't bother with Facebook, Classmates.com, Myspace or even Twitter. Want to meet new, exciting, professional people? There is no monthly subscription or payment obligation. I know the secret.

Want to meet new and interesting people, become a member of the Parents of Children with Disabilities Club. I will guarantee that within a short period of time you will meet more people than you can remember. There will be pediatricians, psychiatrists, therapists, neurologists, endocrinologists, immunologists, teachers, deans, principals, directors of special education, superintendents, tutors, advocates, school board committee members and for some of you, even lawyers.

Raising and educating a child with a disability is a journey. Along the way you will meet interesting, helpful (and some not so helpful) people. All will offer their good intentions and invaluable advice. Some will become like members of your family. It is a meet and greet in the most bizarre of circumstances.

You will become educated in areas that you never dreamed!

You will develop a vocabulary second to none.

Pharmacology will become a new hobby.

You will become a historian of medical information.

You will become proficient in treating medication interactions and side effects.

Truly, you will become a whole new person!

All this and more awaits you when you become a member of the Parents of Children with Disabilities Club.

Your life will become a parade of unique characters with unique opinions, views and personalities. Your life will never be boring again.

And remember this membership is completely free of charge.

Disclaimer: Selling your soul to the devil does not qualify as payment

Review of Middle School Confidential - What's Up With My Family by Annie Fox

2009-02-10T16:39:00.000-08:00

Annie Fox has once again brought us into the minds, hearts and emotions of the middle school teen in her third book “What’s Up With My Family”. Her characters Jen, Jack, Abby, Mateo Michelle and Chris are back each with their own family relationship issues and conflicts. Honest dialogues and open communications are the foundation of this book. Real teen quotes add a unique dimension to understanding the impact family relationships have on our teens. This well done edition to the series is part illustrated novel, part self help and loaded with tips and dialogues to teach you and your child the skills to communicate. This book is a must for any middle school family.