The world renowned experts who have been guests on The Coffee Klatch, brought us decades of experience, research and knowledge. They have truly been the best of the best and their dedication to me as a host, us as parents and most importantly to our children has been overwhelming and heartwarming.

The Chinese Proverb – To Know The Road Ahead Ask Those Coming Back has never been truer than when raising a special needs child or teen. To a special needs parent there is no better resource than one who has been there and can truly understand the emotions and experiences through living them.

On “Inspire” we bring you the parents who have traveled the journey and share incredible messages of inspiration and hope.

Accepting the diagnosis is one thing, accepting the life it will bring is something completely different and much more important.

Meet incredibly inspirational people as they sit down with Marianne Russo and share their struggles, triumphs and messages of hope and inspiration.

Every first Wednesday of the month on The Coffee Klatch 9E/6P pm

Listen to the premiere

This week has been a frenzy of news media overload inducing fear and panic especially among the autism community.  Is it justified?  We will just have to wait and see.  One of the ways we can decide is by listening to the two men at opposing ends of the table and hear their concerns and their views.

One such man is Dr David Kupfer, the chair of the DSMV task force, I am looking forward to hearing what he or a representative of the task force will share with us when I interview them in an upcoming interview.  What are the changes and what is the science behind them?  How will revisions affect our children, their diagnosis, their accommodations, their treatments, therapies and coverage?

I have had the pleasure of interviewing and continued communicating with Dr Allen Frances the Chair of the DSM-IV Task Force a man at the center of the controversy over the upcoming changes.  Is this new news?  Not unless you have been living in a cave.  For the past year I have done interview after interview with the worlds most respected psychiatrists and mental health foundations and in most have discussed how the upcoming DSMV will impact specific disorders.  The concern was universal, the confusion palpable.  Dr Frances will return to The Coffee Klatch Wednesday and explain his opposition to the changes being made.  To me, he is a man with some regrets, a man who did what he thought best at the time, who saw how misinterpretation could lead to misdiagnosis, how what was intended could be disregarded.

These are good men trying to do good things.  The enormity of their work and responsibility to Americans is…. well… enormous.  These interviews are not intended to sensationalize but to educate, inform and quell very nervous parents.

Autism is not the only disorder parents need to keep an eye on.  Juvenile bipolar disorder, the new diagnosis of TDD Temper Dysphoric Disorder and SPD Sensory Processing Disorder are all up for revision, some news is good some, well, let’s just say just as with autism we will have to wait and see.

The DSM is one of the most influential manuals in the world.  It determines diagnosis, labels, treatment and funding for our children’s disabilities.  In my mind it is hard to imagine how any manual could possibly take into consideration all the variables that we see in our children.  How can children with such dimensional aspects to their disorders be so easily defined?  How do we ensure phenotypes and subgroups are clearly represented in criteria.  How does a huge population of children and adults with high functioning autism, Asperger’s Syndrome, simply cease to have their disorders? How will our brilliantly gifted children with invisible disabilities be accounted for? This is no easy task but a very important one to get right.

As I have always said, getting a diagnosis is important, it is what will get your child accommodations and health coverage which is vital but please understand that it is otherwise just a label. Getting a diagnosis is often a validation for parents that what they were feeling, what was in their gut was right.  It gives them a place to start on their long journey.  As mentioned above, with such dimensional aspects to our special kids there is no one size fits all diagnosis and no one size fits all treatment.  I think it best to treat the symptoms and challenges and not the diagnosis or label.  Labels are for designer clothing not children, do not get hung up on them.  When you see your child do not see a diagnosis or a label see that terrific kid with all their competencies and gifts.

Let’s all take a breath, listen to the facts and make informed educated decisions.

Wishing you all strength and calm.

PART I -
DR TEMPLE GRANDIN – DIANE KENNEDY – REBECCA BANKS

Changes to the upcoming DSMV in Autism Spectrum Disorders

PART II-

DR ALLEN FRANCES Chair DSMIV Task Force
Recognized as the the most influential psychiatrist in the world, Dr Frances discussed changes to the DSMV as they will pertain to
Child Bipolar Disorder, ADHD, Autism, Oppositional Defiant Disorder and the new diagnosis being proposed.

Has the Race To The Top driven our educational system into the ground? Race to the Top made competition for grants the way to improve education by having states compete for funding requiring even more testing and data which led to top-down initiatives in an effort to improve teaching. Has teaching been improved or has it been stifled? Who is paying the real price?

I respect teachers, a good teacher can make a difference that lasts a lifetime but in truth, I feel teachers no longer have the flexibility to truly teach rather they assign, not by choice, but by mandate. Parents need to stand up to conformity to get their child a differentiated education within the public school system to foster their gifts and creativity .  That is what employers are going to look for not how high they ranked in high school. By creating a learning atmosphere with such incredible pressure we are not only seeing failure and burdon on our educational system but on our mental health system as well. The enormous pressure to compete among our kids is leading to epidemic levels or anxiety, depression and school phobia.

Child and adolescent anxiety and depression is epidemic and maybe we need to take a closer look at why and where it is being generated. Perhaps our gifted kids are not being challenged on an independent level using out of the box thinking to create programs tailored to their brilliant thinking styles.  Perhaps our struggling students are set up for failure by unattainable goals and the misguided value of standardized testing.

What ever happened to being a good student, a typical kid, well rounded and not an academic genius?  The pressure on our kids to be in advanced placement classes and in The International Baccalaureate program is changing the way parents parent. At NYU in their orientation they made it quite clear to us that if your child has not taken advanced classes the chances of them even being considered are slim to none. This is not just for the elite or ivy league schools, try getting your kid into a SUNY or other state university without high scores on regents or advanced diploma – good luck. What’s the big deal…..have you seen the cost of private college education today? Is the race to ranking creating anxiety not only in children but in parents as well?

What is equally concerning is the shipping out of kids that do not “fit” into a schools ranking profile. I am a fierce advocate for differentiated education and feel that alternative programs are tremendously under utilized.  I would like to see more kids follow their passions and their interests in these programs but what I do not want to see is kids being put in schools beneath their academic levels so as not to lower their districts ranking.

What ever happened to teaching a skill, a profession, a passion?   Why have parents and educators lost sight of the fact that there is nothing more important than happiness and loving what you do?  How can success, being so subjective, be so easily defined in our educational system? Collaborative efforts are needed to foster individual interests and create motivation and success not convoluted reward systems.  Parents are the driving force in getting their children to their goals but it would be foolish to underestimate the impact that teachers as mentors will have. To create the great minds and the great workers of the future we need to value and respect our educators.

I had the pleasure of interviewing Daniel Pink on my show.  If anyone wants to understand motivation they need to understand the force behind human Drive.  Conventional thinking of reward bringing motivation is just plain wrong especially when applied to our educational system.  Daniel has written “Raise the base pay of teachers – and make it easier to get rid of underperforming teachers”  ”Not only is this approach more consistent with the evidence, it’s easier to implement and doesn’t require a new bureaucracy to administer.”

Tenure is a safety net that I would like to see changed.   There needs to be a standard of evaluation not soley based on scores but on many other levels as well.  Employment as a teacher, not unlike the business world, should be retained when performing to standards and not based on tenure.   Just as in every other aspect of life, there are good  and there are bad.   The bad ones have no place in influencing our children’s passions for learning.  It’s time to clean house and apply motivational strategies based on research, not tried and failed programs.

I have educated my children in both private and public schools.  The difference was palpable.  Giving children the environment to learn without pressure of standardized tests, (many private schools do not give regents and other state testing) fostering independent thinking, respecting different learning styles and being in a place where children want to learn and teachers want to teach makes all the difference in the world.

We need to get our teachers teaching, and once again, loving what they do so that our children will love to learn.

The United States needs to be competitive in the world on an educational level but we need to re-evaluate our programs and priorities to ensure our children’s futures are the focus not our districts funding for ranking. We need to not lose sight of ALL children and their individual competencies not just those that score the highest.

Wishing you strength and calm

Do you think your child is too young to start talking about sexual abuse….. You are wrong!

Have you had the conversation already…. Have it again and again and again.

The best way to prevent sex abuse in a child is to be proactive in teaching your child how to keep themselves safe and what to do if they are confronted.

Dr Weichman gives us specific tools to use to discuss the Penn State tragedy: how to have the conversation for different age groups, what are signs of abuse in your child, what are signs of a predator, building trust early with your child so they will come to you, healing a sexually abused child and family and much more

Listen to the interview. You are your child’s best advocate, if not you then who, become an informed educated parent and if you see something, if you feel something….. SAY SOMETHING – Protect your child.

For this writing I want you to try to think of the eggshells we have come to dread walking on as part of the process of making a fine omelette.  Way before you crack and whisk those eggs there are many steps to take to prepare and plan out.  There are cheeses to be grated, vegetables to be washed and chopped, onions and meats to be sauteed and diced and herbs to be picked and scissored.  Much happens before the eggs are cracked and the shells broken. When creating that perfect Sunday morning breakfast the preparation begins even before the start of the omelette, coffee  is ground and brewed, muffins are folded with fruits and baked.

We put a lot of effort into everyday simple recipes and in fact, most tasks we perform during the day become routine and part of our lives.  Do you know why they become so routine and effortless?  Because we have learned how to make them work, we have learned how to get the outcome we want, in the above case, that beautiful fluffy flavorful omelette to be the centerpiece of our Sunday morning brunch.

Now focus on the eggshells left on the counter, they are delicate, fragile and hard to handle. Hmmm Sounds a lot like our kids!

Walking on eggshells is the norm for families with a child or teen with mental illness.  I say families because they effect the entire family.  For some families the word “No” can set off a chain of reactions that can put themselves, their child or other family members in harms way.  A simple change of schedule, a disappointment or anything perceived as a negative in these kids eyes can cause an explosive response that can last hours or even days.  The behaviors are often terrifying not only to the parent but to the child or teen themselves.

What is it about the word “No” that can send our kids into such a tailspin and bring them to that dark place?  I wish I knew.  I’ve come to the realization that it really doesn’t matter, what matters is that it happens and we need to prepare and plan out just as we would for that delicious omelette.  We need to be proactive and we need to learn an entirely new language – the language of calm.  For many parents this will be a foreign language, a language they were not accustomed to growing up and not considered the norm by outsiders.  It is a language that will not only change the way you and your child interact but will change the way your child or teen will eventually learn to speak to others in relationships as they grow older. What is this secret foreign language….. it is the language of constant positives.  Seems simple enough in theory but in practice it takes some getting used to.

Let me go back a minute to the outsiders, when making that omelette do you feel the need to satisfy others in the way you plan, prepare and execute your making it?  Do you take recipes from others that have never made an omelette with the same ingredients before?  I doubt it.  One of the first things you will need to learn is to do what is best for you, your child and your family.  There are those who feel that parental authority includes being rigid or demanding in their speaking to their children of expectations.  For some neurotypical children this may work but even for them, in my opinion, it is not what we want to mirror. Some will tell you that you are spoiling your child or raising/causing a brat.  Being respectful, choosing your words carefully and developing a relationship of trust is not spoiling, it is good parenting.  I think one of the biggest mistakes parents make when trying to have parental authority is to feel that they must make demands.  I feel it far better to take a collaborative effort, include your child in problem solving and develop a healthy relationship.  Sometimes giving your child, especially one with a neurobiological disorder some control of their out of control lives actually GIVES parents control by opening the lines of communication.

So what is this language of constant positives, it is a way of speaking to your child in a way that does not raise their defenses.  It is a way of communicating a negative consequence or starting a conversation about  something they will perceive as negative in a positive way.

For example:

If you do not do your homework you will not be allowed to play your video game. ……… If you start on your homework now you will have more time for that video game.

It is cold outside today so you will have to wear a sweater………. Wow its chilly outside which sweater would you like to wear today pick which ever one you want

Stop whining and get ready for school you are going to be late…….. Im sorry you are having a hard time this morning what can I do to make it easier for you

I see you failed your quiz today what happened?………. I know you tried your best Im sorry you didnt do well on the quiz let’s figure out how to make it easier next time.

If you don’t clean your room you are not going to the movies Saturday……… I know you are looking forward to going to the movies Saturday remember to get your room done first ok.

For every negative way of approaching a topic there is a positive or supportive way as well.   Even when a child is in a rage or meltdown with those eggs cracked it is not too late.  Sometimes instead of “reacting” to their behaviors we need to just let them be and use positive (but limited) language to calm them.  This is the worse possible time to make any demands or try to have them be rational or compliant. Saying your sorry for how they feel teaches them compassion and let’s them know you get their pain.  Apologizing if you lose it, and who hasn’t, teaches them that everyone makes mistakes and shows remorse.  Helping your child or teen find their own way to calm is the greatest gift any parent can give.  Most parents are in constant pursuit of making their child happy instead of making them calm.  Teach calming first and the happiness will follow.  For our kids that are so disregulated this is one of the hardest but most important tools we can give them.

So think about it, think of your favorite recipe, think of my omelette, think of the care we took to prepare for that perfect dish.  We learned the language of master chefs and incorporated it into our daily lives to achieve our desired outcome.  At first it seemed odd, a bit of trial and error with adjustments to the recipe but with time and consistency it worked.

Now think about your child, think about the type of language you use when trying to get them to achieve your desired outcome.  Has the language you have been using consistently brought you the wrong response?  Why not learn a new language, just like your learning the language for your favorite recipe it will feel odd at first, it will be a bit of trial and error with some tweeking but with time, planning and consistency it just might work.

Wishing you strength and calm

Dear School Personnel, Community Members, Teachers, Parents and Neighbors,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes…..

You can read the full blog here
Dear School Personnel, Teachers, Parents, Neighbors…..

Some of you will read this and be baffled, some will be inspired, some will find it ridiculous and others may decide that I am in fact a bit “nutty” and choose not to read my writings anymore. Whichever you are, know that what I am writing is not only true but written to pass along the message to those that need to hear it.

Ever since I was a little girl I have felt like an old soul, like I had some special connection to messages and intuition. Many years ago I read The Celestine Prophecy and it struck me like a lightening bolt. The message in that novel to pay attention to even insignificant small talk, to trust intuitive thoughts, to be open to visions because messages come in many forms, solidified a lot of what made me feel so odd for so long.

I believe in guardian angels, mine have gotten me through. My angels are quite the odd lot, my grandmother Mary who leaves me feathers trailed by her favorite scent of peppermint when she comes, Rob my late husband who somehow finds messengers to say phrases that only I would know, and son, James who makes his presence known in the sweetest ways all seem to comfort me when I need it most. I never felt the need to ask for comfort, it was always there.

As many of you know, my youngest child has had a very serious health issue the past two years and has again been in horrific pain the past few months. We have been to so many specialists I cannot even remember the half of them. None have been able to help her even slightly. I recently wrote that I felt we could stand no more – we were feeling hopeless and defeated. Not being one for prayers or to expect miracles, I’ve relied heavily on my intuition and logic in balance to deal with all the adversity that has come my way.

The past fews months were different, I did what I do not usually do and begged them for guidance, I begged for signs, I pleaded for direction to help my daughter. I did not see them. I felt abandoned. I leaned heavily on the logic, the natural course of action to be taken leaving no stone unturned. Over the weeks I was totally drained by the complete lack of relief and the pain of seeing my child suffer. We were in a state of crisis, my husband usually strong and stedfast, too, finally seemed broken.

I don’t usually remember my dreams, I have been told we all have them but I never remember them. The past month was different, I have been going down memory lane in my dreams. it’s not just when I’m sleeping but even just during the day my mind kept taking me to my late teens and early twenties. I grew up on Long Island and the Five Towns area was one of my stomping grounds. I kept dreaming of the Peninsula Shopping Center sign in Hewlett and the jewish deli and bakery in the strip. I kept remembering the hideous lime green platform shoes I bought at Lonny’s in 9th grade in Cedarhurst. I would smile to myself when I remembered the red train station house and the tracks that I went over dozens of times. My dreams always ended at a club I used to go to in Woodmere called Twigs and during the day I kept thinking about how much fun we had there. They were so vivid they were almost like flashbacks, I even told my friend, I keep dreaming and thinking about my younger years we should take a drive one day and have lunch down there I want to see how much its changed. I thought it was an escape from the enormous stress and a way for my mind to bring me a little relief.

Over the past few weeks my daughter and I have spent much time going to doctor appointments in the car listening to her iPod and she introduced me to one of my now favorite songs – Chasing Pavements by Adele. We listen to it every day and when I heard it I kept thinking that is all I am doing – “Chasing Pavements even if they lead me no where” but it gave me strength in some ridiculous way to keep chasing until I find the right destination.

Last night my husband and I were up again all night trying to comfort my daughter and relieve her pain. My husband was googling everything imaginable to find a solution. I woke to find an email from him with the name of a specialist for head trauma and facial pain – at first I thought – yet another specialist and another pavement to chase leading nowhere – then I noticed the address – 1000 Broadway, Woodmere NY.

If you have never experienced it I don’t think I can explain it but there is an inner peace, a solace if you will, a feeling so familiar, but for me lost.

I called at 6:30 this morning and was told, he would see her today, that he would never let a child suffer waiting for an appointment

As we drove to the office, we passed that Peninsula Shopping Center sign, the jewish deli, the bakery, Lonny’s boutique had a pair of lime green shoes with a matching dress in the window, over the train tracks passing that beautiful red train station house to 1000 Broadway. I was driving my daughter crazy pointing everything out and telling her about my recent dreams and flashbacks and told her, as she rolled her eyes, if we see a place called Twigs that is the sign.

As we got to the destination, we in fact, never did see Twigs.

The doctor was incredible, honest and has given us more hope and direction than we could have hoped for.

As we were finishing up he asked me where I grew up, I told him and said that the area was my old stomping ground and that I had actually been dreaming about it. He asked, “Did you ever
go to the club Trees, you must have, wait, no, it wasn’t Trees it was Twigs?” I replied, with a lump in my throat “Yes” he said – This office is where Twigs used to be.

Listen to Chasing Pavements by Adele Chasing Pavements

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face,  know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

AFTER POST:  Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites.  Feel free to copy in its exact form and use author credits to comply with copyright.

It is an oldie but a goodie and one that every parent with a special needs child should read and take to heart.

Welcome to Holland by Emily Perk Kingsley published 1987

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

If there is one thing I can tell you with absolute confidence it is this, there will be setbacks, many setbacks.  There will be those days that out of no where you are struck with the enormity of it all, the  days that you just break down and need a good cry.

I remember the days that I measured progress and setbacks in hours. Days that drained me both mentally and physically.  With time and with my childs acquirement of calming and coping skills the hours turned into weeks then turned into months and dare I say, with fingers crossed and pajamas inside out , now years.  I can catch my breath, I can go to the store without a knot in my stomach and a cell phone on loud clenched in my hands.  Its been a long road of two steps forward and one step back. Smooth sailing you are thinking, not quite, the fear and insecurity I believe will say with me for many years to come.

The panic and constant state of anxiety parents of special needs children experience almost become a part of you.  It consumes you.  The nature of the beast becomes embedded in our brains and we know that with so many variables to triggers that we can never completely let our guard down.  Many parents become proficient at being proactive, walking on eggshells and creating a sensory friendly world that is foreign to others.  We are militant in our preparedness to avoid that dreaded meltdown and disregulation that once started can set off a chain reaction that can last hours or even days.  Studies have shown that special needs parents have cortisol levels equal to or higher than war veterans. We are warriors.

With time, education and parenting classes or webinars we earn our degrees from the University of “Living It” magna cum laude.  We become fluent in neurobiological definitions and the intricate workings of the pathways of the brain and neurotransmitters yet the diversity and individuality of each of our children make us vulnerable.  It is that vulnerability that catches us off guard and sets us back.

Given the fact that I have been to hell and back I feel I can speak to this with some conviction.  My best advice to you is this….. It happens…..It will pass……. You will get through this – Do not panic.

Waxing and Waning are part and parcel of neurobiological disorders, autism and mental illness.  These periods of exacerbation can be very predicable and often dreaded.  Some variables are the change of season, change of time zone, viral or bacterial infections, allergies, periods of social or academic stress and for some the unstructured times of school breaks.  Some of the exacerbations seem to come out of the blue.  Those are the ones that really knock us for a loop.  It is the randomness and unpredictability that has us on constant edge.  It is the fear that the regression will remain and our child – our families – our lives will fall back into chaos.

I write about digging out of the trenches, learning to survive the journey and pulling yourself and your family out of the pits that suck you in, well, every once in a while you slip back into one.  I think the most important thing for parents to start to do once they get their bearings is to not panic.  When these times of disregulation or rise in symptoms occur our first reaction is to panic, it is a knee jerk reaction.  We often feel that everything we have done was useless.  We drive ourselves crazy trying to find the cause or trigger and immediately think we need to make changes. I can tell you that is not always true.  Some things need to run its course, we cannot change them.  We can be there, we can comfort but we cannot change them. I think that during these times we should take the advice of the flight attendants and put our oxygen masks on first, calm ourselves and understand that the tools and the skills we have spent years giving these kids do not dissipate into thin air.  They will use them but it takes time.

I began to look at those setbacks as a time to have a reality check.  It was a time after some smooth sailing to remember that my child has a disability, that life is hard for her,  that the unpredictability of her life was even more terrifying for her than for me.  Instead of contemplating drastic measures I gave it time to settle, I gave her time to settle and I dropped expectations until the storm passed.   Adjustments were often made but not demands.  These are the times to be kind to your child and to yourself.  These are the times to do whatever it is that helps you maintain calm and clear thinking.  Over the years I began to see the pattern, I awaited the pattern and I accepted it.  I’m not saying it wasn’t hard, it was devastating and many many times I felt I couldn’t get through it, but I did, and so will you.

The setbacks are the reason that we continue to teach calming skills and coping tools when they are in remission or stable.  The setbacks are why it is vital to continue therapies and strategies in times of calm.  It is during those times that these kids absorb the knowledge of the abilities that will get them through the setbacks. As these kids get older ,often times they begin to sense the oncoming exacerbation and can participate in being proactive to cut them off and communicate their tolerance level.  Parents and educators need to listen and observe to try to make accommodations before these kids fall into their abyss. It’s easier to climb out of a ditch than a gorge.

I wrote “Try”… Try to make accommodations before these kids fall into their abyss.  Sometimes all we can do is try and sometimes trying just doesn’t work.  Sometimes we are just going to have to go through the pain of the setbacks and try to breathe.  Unfortunately there are times that our best will be to simply function, to take those two steps forward and one step back and know that this too shall pass and with each step their are gains. Two steps forward and one step back still gets you ahead.

As we waited for the storm to pass we learned how to dance in the rain – Vivian Greene

Wishing you strength and calm

Marianne