Wednesday, December 4, 2013

Wednesday, November 13, 2013

PANDAS...Great strides made in research.

 
 
Recently, a scientist whom has been researching Pandas was able to show empirical evidence that Pandas does indeed exist.

This is second hand information, it might contain some inaccuracies, however, it transcends the main important idea.
 
He cross bred white mice and created a Hybrid that have autoimmune deficits.
 
He then injected them with T cells derived from Panda's serum that is thought to be the culprit behind this disorder. The mice all started to show Pandas symptoms. They went from calm to a hyperactive state, frenetic, and aggressive, also doing the same motoric movements over and over again.
 
He then treated them with IG antibodies. (The same treatment that Everett received last June).  They all returned back to normal.
 
He then did brain biopsies on the mice.  He found that the T cells had indeed made their way across the Brain Blood Barrier and into the Basal Ganglia, causing an inflammatory response that is not able to be viewed by an MRI, or detected by a blood test.  The controversy over Pandas is that nobody could prove that the BBB could be breeched. He has now proven this.
 
He did timeline linear autopsies to see how long these antibodies would remain in the brain before leaving. (full recovery).  Timeline showed several months to leave the brain if not re-infected. The conversion to humans is up to 6 years.
 
Because he was able to replicate this by injecting  Pandas serum, it  showed that once the Pandas disorder is tripped off, all future T cells mfg by the immune system have what is called a "working memory". Meaning, if a child has a cold, stomach flu, loses a tooth, stress, anything that causes an autoimmune response in any way and T cells are mfg, they will go after the basil ganglia as well as the foreign enemy, especially if the BBB has not had adequate time to heal and close. Thus, we see the remitting/relapsing pattern in children.
 
The good news: All research studies reveal that  All children who have been treated young, like Everett, recover fully and lead healthy lives. It may take 1 to 2 years for the effects of IVIG to do their things, but the prognosis is promising!!! 
 
His work is in the process of being published by the scientific journals and undergo peer review.
 
Translation: We are not all crazy.
 
 
 
 
 

Sunday, November 10, 2013

Pandas: Our life since IVIG.

PANDAS.  Our life since IVIG...

Mid June of this year, our son had his first IVIG treatment.  If you have followed this forum, you would have read just how beautiful he did.  His motoric movements non-existent within in days of treatment.  His temperament,  unstable, volatile , and hyper... overnight, changed back to the child I knew.  Gone were his tantrums, angry outbursts, and  unreasonable attitudes.  His need to use an entire roll of toilet paper in one sitting went away.  I did not hear him speak of fears that I, his mom, was going to be hurt because I stood on a chair, or rode a bike, etc.    I saw a child grow up instantly.  The milestones we all wait for with typical children seemed to appear overnight.  I saw a child who was acting like a 7 year old, and not a 3 year old from an emotional standpoint. He was now calm.  Self awareness and an active awareness of social norms  started to show itself.   My child, my sweetheart, was smiling again.  He was meeting the potentials that I knew were deep inside of him.

This lasted for 12 weeks.

In school, Everett was exposed to Strep and the Stomach Flu.

Three days later, on a dime, my child reverted back. Another episode. We tested for strep and it was negative.  He ran a slight fever, but that was all.  It appeared that he was reacting to exposure.  The next three weeks were horrible.  All past symptoms reappeared along with a level of anger/oppositional behavior that I had not seen before. School was almost impossible. What got him through were the group of teachers, school psychologist, and principal who came to together in support of my child.  They were amazing. 

Our pediatrician, who diagnosed him with Pandas, agreed that perhaps it was time to test further.  Make sure that we did not miss anything. So in one day, my child underwent an EEG, MRI, and a Lumbar Puncture along with blood work.

He was discharged by the neurologist who did not believe in Pandas, and said that his blood work did not indicate any autoimmune issues, (Pandas is considered to be an autoimmune disorder).  He said, "If your son had an autoimmune disorder, we would have found it. While we have weeks to wait for the Lumbar Puncture results I do not believe that we will find anything." 

4 weeks later, the results came in.  My son has an autoimmune disorder.  Two well defined O Bands in his spinal fluid indicate that. 

In my humble opinion, it was this autoimmune disorder that created the perfect circumstance for Pandas to set in and take hold.

We now have insurance coverage for future IVIG treatments, and in fact, it looks like our Insurance carrier is  going to reimburse us for the one he had which we incurred almost 9K out of pocket expenses.

I am happy about the money, but I am more thrilled that we were finally able to find something to support his diagnosis.  Pandas is such a nebulous diagnosis.  It has yet to be truly embraced or fully understood by the medical community.  Parents who have children struggling with this disorder are often met by misunderstood, unsupported, smug disdain when turning to others for help. Parents  experience this from doctors, teachers, friends and family members.  To put it bluntly, it is awful. We have been blessed.  Our Pediatrician was the first to connect the dots.  We are lucky to live 20 minutes away from one of the few specialists, Dr. K.  My child's school was wise enough to know that this child, was "suddenly not himself".  I applaud them for their open hearts and minds.

This was all good, but our battle is not over just yet.

This was a tough episode. An unexpected one.  However it happened.  We were able to move him through it with antibiotics, but I am concerned.  It took only exposure to trip it off. 

Studies show that if Pandas is caught early, and an IVIG is done within the first year of first episode, 80% of children recover fully from this disorder with no future episodes. My son's was done about 1 1/2 years after his  first episode with 3 concurrent episodes before IVIG.  Another one is in his future probably.  I am grateful that we will have coverage. 

I share our journey to help others.  If you suspect Pandas, I would recommend following through with your instincts immediately.  If your child ever contracts Strep, don't assume that the antibiotics cleared it up.  Have your child retested to make sure.  By doing so, you can decrease the likelihood of Pandas ever happening.

qannie

Friday, August 30, 2013

PANDAS/IVIG...Did it work?

     Pandas/IVIG....

     11 weeks ago, my son, Everett, received an IVIG treatment for Pandas.  Since then, he has been doing amazing.  He is a different child.  He has returned back to a child whom is calm and reasonable.  He is acting age appropriate.  He has dropped his baby like tendencies, like baby talk, and  wanting to eat with his hands.  I am not seeing the ocd repetitive behaviors like spinning in circles, running up the same three steps over and over again.  He is no longer exhibiting what I would describe as "herky jerky" movements.  He is no longer screaming out like a bird over and over again.  I am not seeing hours and hours of oppositional/argumentative behaviors.  His short term memory is starting to return.  He truly is a different child.

     I often find myself just staring at him at times when he is sitting calmly at the kitchen table. Or when I make a simple request like, go get dressed and he does it.  He does it.  No more ridiculous meltdowns that don't make any sense.  It is almost too good to be true. 

    Everett will be on antibiotics for the next two years most likely.  He is on a regime of magnesium, vitamin C/daily vitamin, and probiotics.  The abx acts as an anti-inflammatory as well as to help ward off illness.  I am told it is not strong enough to hold off strep, and while the IVIG is doing it's thing, and his immune system is maturing, we will be very vigilant about catching a strep infection as early as possible.  In December, he will have his tonsils removed. 

     We will all keep our fingers crossed....but so far....so GOOD!

     qannie

Monday, August 26, 2013

My Child Brought a Bullet to School.......Deviance? or Innocence?

    SPD'S & BEHAVIORAL PROBLEMS...

    I have a message to share.  But before I share it, I have a question to ask. " How many of you would like to be rendered inept amongst a roomful of your peers?"  I want you to reflect on this thought as you continue to read...

     Last year, my 7yr. old, about mid-way through the school year brought a bullet to school.  The call came from the principal.  The first words out of his mouth were, "I am not going to make a big deal about this".  When I found my words, I quickly explained that we had been to a Revolutionary War Parade during the summer and my son found it on the ground and must have stuck it in his pocket. His reply was, "I figured there was a reasonable explanation for this".   We discussed the incident for a couple more seconds,  decided to just throw the bullet in the garbage, and just leave it at that.

     I was very fortunate that my child's principal was wise enough to think out of the current box.  Not jump to conclusions.  In order for him to remain so reasonable about the situation at hand, he had to have wondered if there were other, more innocent things at play behind this incident.

     So, "Why did he do that?"

     There is an age old saying, "Don't judge a book by it's cover".  Another favorite one warns, "Don't let appearances deceive you".

     That bullet... "Did it represent defiance?" "Violent tendencies?"  "A troubled household?" "Was he just plain bad?"  The answer, "none of the above".

     That bullet represented a child whom was struggling to learn how to read.  It represented social, interpersonal, and academic desperation.  During these times where the bar for academic excellence is being pushed up a notch, for a Type A child, imagine being in a room surrounded by your peers and feeling like your the only one who can't read. Many of whom are reading chapter books, and you are barely getting through a Dr. Seuss book.   Imagine that while your teachers are aware of some of your struggles,  you are bright enough to  come up with strategies to fool even them.  Ways to cover up just how big the problem is for you.  Imagine how heavy a load that is to carry on a set of 7yr. old shoulders.

     "Imagine being  rendered inept by a roomful of your peers"

     So what does a bright, resourceful 7yr. old do in a situation like this?  When he is failing miserably to keep up with his peers academically?  Why, he decides to bring a bullet to school!    What better way to awe/impress your boyhood peers then to show up with a bright and shiny object such as that. Brilliant really, great way to deflect.  Imagine the "oohs & ahhs" that would achieve!!! It was the simple act of a little boy who was trying in his own way to fit in. 

      It could very easily have been construed differently.  Especially in today's times.... Children are under intense scrutiny, socially & academically.  Imagine how that would have resonated with a little boy who was just trying to impress his friends.

     My message is not about teaching your child how to read, it is about getting to know your child in a way that allows you to meet them where he/she is.

     If you have a child whom is displaying counter productive behaviors that are getting in the way of their social, emotional, or academic success, I advise that you look a little deeper.  Fight for that child.  Get to know that child.  When a child is struggling, acting out, or  not responding to "traditional parenting" methods, I quote, Harold Glaser, "It is very rare that it is the product of Pathology".  Meaning, it is highly unlikely that your child's behavior is the result of an unlucky roll of the DNA dice that rendered your child inherently "bad".

     It is more likely that your child is hurting or struggling in some way.  Dig.  Read a book.  Talk to professionals.  If what they are saying to you does not ring as "truth", talk to somebody else. If traditional parenting is not working or even making things worse, then abandon those ideals and find what does work.  Intense kids, kids whom are struggling in some way often need you to step outside that box.   Do the work during these formative years.  It is so important.

     In closing, I do have one book recommendation, it is called, "Transforming the Difficult Child, The Nurtured Heart Approach", by Harold Glaser  

     Qannie

    

Monday, July 22, 2013

SPD's & High-strung children....The Ultimate Summer Meltdown

     Sensory Processing Disorder,  High-strung children...........and Summer

     Summer.  Sunny mornings, sleeping in a little late, no lunches to pack, no mad dashes out the door to catch the bus...Ice cream, swimming pools, fireworks, yeah...paints a pretty picture doesn't it?

     The school bell rings for the last time, officially commencing the end of my two little darlings 1st grade year.  We are all excited.  Even I was.  After a very busy, and challenging academic year, I was proud of my boys.  High-strung dispositions & Sensory Issues in tow, my guys did about as well, even better, then I could have possibly hoped for. 

     Without the academic challenges and tight behavior boundaries...with Summer... it could only get better.

     WRONG

     To put it bluntly, ALL HELL BROKE LOOSE.

     They awakened and were almost immediately out of control.  The mornings started with running, jumping, screaming, fighting, back talking, bad table manners, stuff thrown carelessly all over the house.  They were bored. They wanted ice cream or Oreo cookies for breakfast.  When I said no, the meltdowns were ridiculous.  Matchbox cars were flying thru the air, mattress were turned into jumpies, every time I looked out the window, one of them was in the street. The word, "MOMMY",  was uttered about every 5 minutes.  The word NO became the official language of the house.

     We were officially out of control. And I could not seem to get them back on track.   I was stunned. How did this happen?  What happened to all my hard work?  What happened to all of our behavior accomplishments?  Was it a dream?  A fluke?  OMG!!!  It was a fluke....a random series of accidental  positive behavior changes that happened to last for about a year or so.  And the run was over. 

     Translation : I SUCKED.  Everything that I thought I knew about how to manage Sensory/High-strung children was an illusion!  I was a failure!   I knew nothing...and we were doomed.  I promptly opened up a bottle of wine and quit writing my blog.  I was a fake.  It was over. 

     Two weeks later...Howard Glasser, " The Nurtured Heart Approach".  Somewhere in the back of my memory I remembered one of you wonderful readers recommended him  to me.  I went to the library, rented his audio, and watched it almost straight thru. 

     Three hours later,  with much learned.....I also remembered how much I had forgotten.  How I myself had fallen and unraveled into old parenting behaviors and ruts.  I had forgotten about  negative attention.  I forgot how my kids natural temperament's  can thrive and run-amuck with too much negative attention.  How it actually becomes an energy source for them to fuel more negative behavior.  I forgot that Sensory/High-strung kids have trouble with "Starts & Stops".  Even with good "starts".....even the start of Summer......

     BINGO.........

     I had the answer.  What had happened?  Summer is what happened...or at least the "start" of Summer.  My children's immature central nervous systems just did not have to goods yet  to handle the excitement of transitioning into Summer.  Loving the idea of starting Summer did not necessarily mean that they could yet handle the emotional charge that came with the idea of endless days of fun fun fun, and lacking the  very much needed structure.   So, they unraveled.  I unraveled.

     So, with thanks to Howard Glasser, I was reminded about some of the stuff that I already knew, and implemented some priceless techniques that were new to me.  I took a deep breath, and started again. 

     Remarkably, within two days, I was able to revert my kids back to their new norm.  They calmed down, started listening again, backed off of a lot of negative behavior, and looked happier again.  I was happier again.  Summer was happier.

     Hence, I have started writing my blog again....I don't suck.

     What I am really excited about is sharing all the tips and insights that I learned from Howard Glasser.  I look forward to sharing firsthand how I have used his techniques, what that actually looks like, and reporting the success.

     So I will end with this thought.  Be careful about the unseen booby-traps that summer can bring...and if you find yourself experiencing some unraveling with your kids...know that it is normal.  All is not lost.  Just pull up your bootstraps and go back to the basics....

     Have a nice Summer,

     Qannie
    

Friday, May 31, 2013

Sensory Processing Disorders...Our children, what will become of them and all their glitches....

     Worry.  A state of mind that I have come to be well acquainted with.  When you are blessed with children with special needs, you can't help but worry.  What will become of them?  How will they do in life?  Will they overcome these obstacles?  Will they be able to do well in school?  Will they socially mature and make friends? Or will they be the kid who don't get invited to the Birthday party, the one last picked on the team?  Will school lunch be a hurtful, dreaded experience because everybody is making fun of them and nobody will sit next to them? Can I do enough for them so that they will be able to find their place in the world, a place that leads to self contentment and inner happiness? Or will it be a life long challenge of having to watch my children  struggle emotionally, socially, academically?  Will  I, as their parent have to watch and  simultaneously feel my heart break for them?  These are some of the things that  cross my mind.  As positive as I am by nature, when the day has come to an end, and the lights are off, I worry.

     Yesterday at the park,  as I watched my two free spirited, worry free, children play amongst their peers, my mind strayed once again to that all consuming question, "What will become of them?". 

     As I once again, faced these concerns for their futures, I decided to look in the present for some answers.

     My friend Carm.  She is classic OCD.  When you talk to her, she is consistently blinking her eyes, clearing her throat, hyperventilating, and talking way to fast.  She is definitely glitchy.  Carm, is 40 years old.  She finished college with a masters in Social Work, started her own Nail Salon, which evolved into a wellness center, and sold it for quite a impressive amount of cash...Everybody loves Carm.  She is smart, funny, intuitive, and she draws people to her.  Everybody is aware of her glitches...but they, as well as  myself, just don't care.  WE like Carm.  Carm is successful, happy, and living her dreams.  Really nothing to worry about over Carm.

     My friend Donna.  Donna is definitely on the ADHD side of the fence. She talks very fast, changes topic rapidly, often makes leaps in the conversation that appear to have nothing at all to what you are talking about.  She is a meticulous note taker...she must...or she will forget. I just love Donna.  She is a successful sales person who is smart, a great people read, hard working, a positive person to be around,  and somebody whom I would not second guess to quickly.  Donna has glitches.  It is apparent after you get to know her...but who cares, did not stop me from loving our conversations and wanting to be around her.  And apparently her glitches don't seem to get in the way of her meeting her fullest potential.  Really nothing to worry about Donna.

     Sara.  Sara too can be a little ADD.  Her short term memory is pretty awful.  She often tells me the same story over and over again.  Insists that the conversation that we had "never happened".    Sara is one of the smartest people I know.  It is often her that I go to if I am stumped.  Sara is one of the most successful people in her industry.  Her common sense is second to none.  Her ability to be a chameleon and mold herself into just about any situation is admirable.  She has a tremendous ability to see the "big picture", and it is this particular quality that has led to a life of success professionally, and inter personally.  Sara is happy.  People like Sara.  Sara likes Sara...as well as she should, she is a good person, and an asset to have in one's life.  Really nothing to worry over Sara.
    
     Which leads me to myself.  As a child I was an absolute mess.  I came into this world, colicky, high-strung, a little ADD and way to sensitive.  I have some battle wounds from childhood that I would rather not remember.  As an adult, I can sometimes be a little too intense, still a little  ADD, and my short term memory is rather embarrassing.  Yet, today, I can say that  I am happy.  I have friends, a wonderful family, and I have enjoyed great success in my career. I am proud of who I am.  I accept my flaws as well as my strengths.  Like all of the people that I admire most in this world, despite all of our glitches, I have found my spot in this world and I am content.  At the end of the day, I do not worry about myself....

     With great relief, as I let my mind wonder through this empirical  evidence, with the realization that perhaps most of us have come into this world a little glitchy, imperfect, and yet, through the grace of human spirit, loving parents, and perhaps some magic, we are all okay.  With great relief , I embraced the knowledge that  my children,  too,  would be okay. 

     I think everybody has a story.  It is what makes us human.  Where we draw strength from, glean wisdom, it's what  help's us to understand our children...

      So that is my new found wisdom for the day.  I worry too much.  I will always worry, that just comes with the territory of loving children.  However, the next time I feel myself overcome with the thought, "What will become of their future?", I will look to present to find comfort.

     qannie47


      

Monday, May 13, 2013

Sensory Processing Disorder: Slowing down Hyperactive Behavior....

     Sensory Processing Disorder & Hyperactive behavior....I have found that children with Sensory Issues can also exhibit traits that mimic Hyperactive behavior.  Whether they are sensory seeking, or sensory sensitive, these kids can have a somewhat "backward" relationship with stimuli, and it's effect on them.

     When my children both started to look like two nuclear energy balls...figuring out how to slow them down of course became a focus.

      Using good, basic common sense, it seemed to me that if my little guys had a lot of energy, I should encourage activities that would require "high energy output" in order to slow them down, tire them out.   Activities that involved lots of running, jumping, big cardiac workouts...I took my kids to parks, long bike rides, jumpy places.....for hours I would watch them put out immense amounts of energy.  I then would wait for the end of the day CRASH...Waited for the "Mommy..I'm sooo tired".....Surprise...it very seldom came, if ever.

     So I thought, I must add more activity to their day! That of course involved longer bike rides, extended park time for them to run around and scream their little heads off....Nothing...again, very seldom did these kids come home energy depleted....

     Then the irony hit me,  "IT SEEMED THAT THE MORE ENERGY MY KIDS PUT OUT, THE MORE ENERGY THEY GOT"  Like little magnetic energy balls, it became more apparent that they seemed to feed off heightened levels of stimuli.  By the end of a high energy day, my children were not tired.  They were crabby and more emotional volatile, a little crazy,  but not tired.   Hence, what wore most kids out by the end of the day seemed to have the opposite effect on mine.

     HMM......

     Sensory Kids: An inability to take in external stimuli and organize it effectively.....

     One day, we decided to go to the beach.  I watched my kids swim against Lake Michigan currents, build sand castles, which required several trips back and forth carrying heavy buckets filled with water and wet sand. I watched them move around an old abandoned tire around the beach for hours.  They manipulated this tire for hours...slow, heavy, methodic work.  I watched them run the beach...running on sand I noticed caused "resistance".  They were unable to reach peak speed.  Their sprints in the sand were slower, required a  more contolled  effort.  It was not an especially hot day.  Actually it was early fall and quite cool.  So at the end of the day, when we promptly loaded our two little darlings into the back of the car for the ride home, I was quite amazed to find that they zonked out in five minutes. THEY FELL ASLEEP. THEY NEVER FELL ASLEEP IN THE CAR!!

     Huh?  What was different about this day?  I had in fact seen them put out much higher levels of energy and it had not fazed them a bit.  In fact when they were five, we as a family did a 15 mile bike ride in Michigan..they did not fall asleep that day.

     It was this day that I gleaned my first insights into how you go about slowing down a sensory kid. 

     The key does not lye in how "much" energy is put out.  The key seemed to lye in "what kind" of energy was  being put out:  Slow, Deep, Controlled.    

     From that point on, when I wanted to tire my kids out, or slow them down. I tried something different.  I didn't make them run around, or put them on their bikes for hours, or bring them to jumpie gyms...Nope...I did these kinds of things instead....

     I  ask them to move my furniture around the house several times until I find the "perfect"spot.    I have them move boxes filled with books from one room to the next in an effort to "help" mommy.  I bring them to beaches and swimming pools.  I look for sled parks and challenge them to races "up" the hill (winter or summer).  I enrolled them in gymnastics, the rope climbing, parallel bars, rings...When I needed a hole dug, (weather I really needed one or not), I had them dig it.  Raking leaves....

     Slow, Deep, Controlled.  I believe that several important things happen when a High strung, sensory kid engages in these kinds of movements.  First, the sensory input is what their brains crave and need.  The deep, controlled movements give sensational sensory input and the brains says's "aaah".  Second, The movements are slow, again, more controlled, and it teaches the brain "how" to "slow down", actually allows the brain to feel what it's like to go at a slower pace.  Third, Ever exercise?  Try riding a bike.  It is much easier and less taxing on the body if you are peddling fast on a light gear.  Switch it to a higher, harder gear.  I guarantee you, it will slow you down, you will feel the resistance, it will be much harder, and you will feel like you had a much harder work out in the end and you will be tired.  Slow down your child's pace with added resistance: you will get a tired child who slows down.

     The furniture? A lot of deep slow resistance that also slows down their pace.  The boxes? Same thing.  The swimming pool and beach? While it may appear that your kids are moving fast, but not if you compare it to running at a park.  The water provides resistance, gives them great sensory input, and indeed it is a slower deeper energy output.  Running up hills?   Much the same...Get it? 

     So.  When you are trying to slow your children down, remember these tips....Slow, Deep, Controlled.  It worked so well for mine that I am convinced it will work for yours.  Give it a try. 

     Email me and let me know.

     Qannie   
      

Monday, April 15, 2013


     Sensory Issues:  Emotional & Social Milestones…..

     Children with Sensory and Auditory processing issues often will be delayed in maturity milestones.  Emotional regulation, Impulse control, Frustration tolerance…..these are just some of the areas you may see your child a bit delayed.  When a sensory child is delayed in these areas, it can also cause delays in other areas: attention span,  learning, social skills, etc….

     Here is what I have understood about the world of Sensory Issues, how I would explain it, in general, and simple terms.  I have learned that Sensory kids, when encountering the outside world, (we will refer to it as “stimuli) will “short circuit”.  Their central nervous systems are 1) Failing to take in stimuli accurately: by either perceiving too much or too little 2) Failing to organize stimuli effectively 3) Therefor they will be unable to process thru and effectively respond to stimuli, negative or positive. It is these glitches in the central nervous system that I believe, lend themselves to the above listed emotional and social milestone delays. 

     Emotional Regulation:   For example, a child who has not yet mastered or begun to master Emotional regulation, can be short tempered, prone to meltdowns that are not age appropriate, likely to give up easily when learning new tasks,  appear very “needy”, appear very “angry”, have a difficult time with “stops & starts”.    In order to control their temper for example, exhibit emotional regulation,  a child must be able to:  A) quickly assess a given situation, B) Identify how they are feeling, C) problem solve, D) choose & demonstrate socially & age appropriate reactions. Until a child is able to do the above listed, they will not acquire “emotional control”.   Hence we see our children have meltdowns, whether they are being asked to sit quietly at the library, put a puzzle together, or even when at a best friend’s birthday party.  Stimuli are stimuli:  Positive or negative, a sensory child can have difficulty and be challenged by both.   We can easily understand the child becoming frustrated with a puzzle, but completely mystified when Disney World renders our sensory child irritable, hyper, moody, or even detached.
      Children with emotional regulation also have problems with stops and starts.  Whether it involves starting a new task or moving on to a new one.  We have all seen this happen in all children really.  It is time to leave the park, Johnny has a meltdown…The key difference I think is that in sensory kids, the meltdowns  happen frequently, and they tend to happen on grand scales and last much longer.   Eventually, most kids, after repetitive tantrums, realize that their “gig is up”, the tantrums “don’t work”, and move on to a more self-adjusted approach.  Starts are a key difference as well.  They have trouble settling in, acclimating to new beginnings.   Sensory kids, don’t make these shifts with just time and typically expected maturity leaps.  They must be sensory organized first.  It is then and only then, that these shifts happen. 

  Problems with emotional regulation unfortunately have a ripple effect, and contribute to exacerbating other milestone delays exhibited in sensory challenged children. 

     Frustration intolerance, Attention span & Learning:  Sensory challenged children can also appear to have a diminished ability to deal with frustration, which can lead to  shorter attention spans.  Again, I believe it all ties into the same quirky central nervous system issue.  In order to sustain focus & learn, take learning to read as an example: a child must be able to  A) Understand that focus is needed (assess a situation) B) Recognize on some level that they are anxious. (Identify how they are feeling: anxious) C) accept that focus is necessary, & remember that they can & have managed it before (problem solve) D) manage their frustration level in order to sustain required  focus (choose too and execute an age appropriate response). In the above scenario, the sensory or auditory challenged child often reacts this way instead: Feel bombarded by anxiety at the thought of learning a new task and become over stimulated:  (stuck in the emotion and is rendered unable to mentally assess the situation accurately).  They will then begin to  over react, “over feel” frustration and either act out or shut down:  (fail to organize stimuli effectively and fail to Identify). They will then proceed to get lost in that level of frustration and fail to try to gain control of their frustration (unable to process through stimuli and problem solve ). They will give up (fail to find a solution).   Thus the sensory kid, who is not taking in given stimuli accurately, organizing  effectively, will be unable to move thru these necessary processing and can have great difficulty with attention span, thus, affect the ability to learn a new task, such as learning to read.

     It is important to know that it is difficult to understand in the beginning if this is just a “sensory issue” or a separate issue all together.  Time will tell.  As you work with your child, and help their world’s to become more “sensory integrated”, if it is just sensory related, their attention spans will grow to an age appropriate range. It is important to understand that you must sensory integrate your child before you heap upon him big learning challenges that are not yet within his/her emotional range.  To do so before they are sensory ready will only serve to frustrate you and your child, and lead to failure.  Do not misunderstand, all children no matter where they are can and will learn.  It is just very important to understand where “your” child falls on that curve…Very important.

     Social cues, Filtering, Boundaries setting proper limits & respecting them:  Sensory kids can exhibit problems in these areas as well.  First, their proprioceptive “time & space” is often off, again a mismanaged central nervous system.  These kids have a difficult time assessing themselves “in the moment”, mentally & physically.  Which can lend itself to social problems.  For example, the local playground:  By as young as age three, kids are starting to take in, understand, and manage some social protocol.  Waiting their turn at the slide, respecting others space such as not bumping and leaning into others, learning not to dart into others to avoid collisions, standing at an appropriate physical space next to another.  Voice regulation: not speaking to loud or too soft.  The ability to filter starts to develop: When kid’s start to learn the ability to appropriately respond to others in a way that is conducive to relationship building. They learn that they can control what they “voice”, choose their words more carefully as not to alienate others.   Able to accurately “read” other’s body language:  a smile means “I like you”, a frown conveys “back off”.  Kids are learning to intuitively “feel” the emotional, physical and social temperature in the given social setting, and adjust their actions age appropriately.  They understand and are able to adjust their mind and bodies so that they “fit in”.  All of these milestones are the early building blocks in becoming social integrated.  In order to read social cues, properly filter, set & respect boundaries both physical and mental, these things must happen:  A) Perceive & read the social protocol of the playground (assess) B)   Be self-aware of how they are acting and how their actions are affecting others (Identify)  C) Recognize proper ways in which how they can navigate assessed “social protocol”. (problem solve)  D) A desire to adjust/ successfully Change their behavior to socially acclimate. (Choose age appropriate reactions).  Sensory kids often are not physically integrated into their worlds.  There also can be a misfire when it comes to spatial relations, “time & space”.  Again, their central nervous systems are failing to take in stimuli accurately, and organize it effectively, but now in a physical sense.  Watch some sensory kids.  They often bump, over lean, and even completely miss when it comes to relating to the physical world.  They trip over their own feet, bump into walls, fall off chairs, and miss their mouth when eating….so it is so with their peers.  You see them bump into others, crowd social space, talk too loud or too soft.  Socially, this can get in their way, and if at the same time they are unable to take in social cues accurately, problem solve and make appropriate adjustments…..well….do you see how it all ties in?
      The good news is, as they become sensory integrated, emotionally, mentally, and physically, the rest will fall into place.  Chances are high, because you have worked so hard as a parent, gone above and beyond with communication, setting examples, patience, and behavior management programs, because you have instilled in them many ethics and values that many non-sensory challenged kids have yet to learn, when all of you turn this corner….much of your future work could be easier…you may indeed find your children ahead of the game.  I have witnessed this phenomenon in my own children. So as I have always said…there is usually a  pay off at the end of  every the tunnel.
     Impulse Control & learning from past mistakes:  The sensory child can have a tough time here as well. Again, let’s look at the cycle.  Impulse control: assess- identify- problem solve- make appropriate choices….In order for a child to master Impulse control many things have to happen correctly.  Consider this:  Johnny is playing ball outside with several of his friends.  Kids are laughing, running, yelling.  Balls are flying and it is hot outside.  The ball inevitably ends up flying in the street….and of course, it is  your child who runs into the street to retrieve the ball without even looking up to check for cars….an accident waiting to happen.  Impulsive.  Let’s examine what went wrong from a sensory standpoint:  First it is likely that your Johhny’s central nervous system failed to take in the external stimuli accurately (in this case too much-over stimulated), and then failed to properly organize it.  Chances are high that the laughing and yelling was perceived by his brain to be much louder than that of his peer’s brains.  The running and ball flying, probably way too much stimuli and was perceived by his brain as frenzied and chaotic.  The hot day, if the other children were feeling the effects of the heat, Johnny was probably boiling hot and it was starting to affect him mentally and emotionally.  His brain/central nervous system most likely started to “short circuit” before Johnny even had the chance to Assess: The ball went in to the street. Identify: Move from an excited state to one that allows one to stop and think.  Problem solve: recognize that streets can be dangerous.  Choose appropriate response: Look both ways before carefully entering the street to retrieve the ball. Instead, Johnny ran into the street without breaking speed.   Do you see the connection?  Johnnie's impulsive nature is directly tied to his sensory issues.  And can you imagine how difficult it would be to demonstrate the ability to learn from past mistakes when your body is unable to A) accurately take in and B) organize the “moment” smoothly, and in a time efficient manner that is required in order to make good choices?  When prompted, either before playing or after, Johnnie may be able to explain the dangers of running blindly into the street, but that does not mean that while in “the moment”, he can effectively process himself to a state that facilitates non-impulsive actions and good choices.  So you can see how sensory issues can lend themselves to impulsivity and appear that the child is unable to learn from past mistakes.  I believe that these children do indeed learn, they have the ability to understand, but the problem lies more in their ability to react appropriately while in the moment. Have you ever gotten lost in an unfamiliar area while driving?  Remember how that felt?  Most likely you became disorientated and frazzled which caused you to be unable to think clearly, so you kept going in circles, making wrong turns over and over, when if you had just pulled over and made a call or consulted a map you could have avoided the whole situation.  Your central nervous system temporarily “short circuited”.  I believe that this is how sensory kids feel on most days. 
     Sensory challenged kids are often delayed when it comes to some or many Emotional Milestones.  In my opinion they are often misunderstood and can get a bad rap, as well as us parents.    Sensory Integration disorders are still relatively new to the medical arena, and much is still needed to be understood.  It is difficult to understand how sensory issues can lend themselves to poor behavior.  Kids can be viewed as spoiled, out of control; “bad”….Parents can be seen as irresponsible, ineffective, and oblivious.  I believe that this is not the case.  When you look at behavior from a sensory standpoint, see how it directly effects things like emotional regulation, impulse control, attention span and mood, you can begin to understand your child.  Begin to help them. 
     The great news is that research shows that with early intervention, great strides can be made to help your child’s brain/body to integrate and organize with the outside world.  Buy the books, find the professionals, do the work, if it fails try harder.   Don’t give up. 

     I want to add that this post, as with all my posts, is an eclectic collection of ideas that I have learned from health professionals, teachers, family members, close friends, as well as some of my own thoughts.  I make no declaration that I have it all figured out, because I don’t.  I suppose I could easily find some who agree and others that  don’t.  My point in sharing these thoughts is just that.  Sharing.  If you take something away from it that helps, then that is what I think counts.  
   
  Hope this helps,
  qannie

Sunday, April 7, 2013

Sensory Processing Disorder & and learning to read.

     Sensory Processing Disorders & Reading.....This was a tough one.  My Michael struggled with learning to read.  In short, he hated it.  Here is why.  As I have mentioned before, kids with Sensory Issues are often behind in some maturity milestones.  Particularly frustration tolerance.  Learning to read requires a lot of patience and having to deal with frustration.

     Michael's ability to deal effectively with feeling frustrated at the beginning of 1st grade was probably about that of a 4 yr. old.  His reading level at that time was barely meeting kindergarten requirements.

     I choose not to worry about it.  I choose to work on his emotional needs first.  I felt that he needed to acquire skills such as frustration tolerance, patience, anger management, impulse control....pretty much anything that came under the umbrella of "emotional regulation".  I let his teacher know that this was my chief area of concern, so reading, writing, etc...would not be a daily part of our regime.  If Michael got through the day sitting still, keeping his hands to himself, and was able to follow rules I would be thrilled.

     About 1/2 way through the year, they did their quarterly standardized testing.....Michael came in at the 5%.  His report card reflected that he had not yet met the standards   I panicked.  I  second guessed myself.  What was I thinking?  OMG!!!, I was completely off!!! While we had made GREAT strides with emotional regulation, I had set my son up to be completely behind academically......I had failed as a parent. UGH.

     So I called one of my trusted advisers who had already been through all of this, who knew my children, and asked their opinion....Their advise seemed wise, so I took it.

     Twelve weeks later, Michael is not only reading, but has caught up to first grade reading standards.  As a matter of fact, today, 15 weeks later, he has met all the requirements outlined for the end of 1st grade.

     I was not wrong.  I had not failed.

     Coincidentally, when I discovered that Michael was so behind academically, it was at the same time that I was starting to see some real success in regards to emotional regulation.  It was time. Michael was ready to handle the pressures of learning to read.

     Here is what I did.

     I took all the 1st grade level books and tucked them away.  I pulled out all the books that he should have already mastered in Kindergarten.  "Little A & Little B" books.  Books that some three year old's were already mastering.  I did not care.  This is where we would start.  I would make it as simple/easy/stress free as possible...work on him feeling successful.  I never corrected him, never..when he stumbled on a word, I never let him struggle, I just read it for him.   Let him see that he could.....  He cried and cried through the entire first step process.  10 minutes a night.   I did this for about four weeks.  I did this until Michael was so adept at reading these books he could read them without looking at the pages.  No, Michael was not reading yet...he had memorized....but he was starting to feel successful.....

     Second stage.  I took him to books like "Green eggs & Ham".  Again, books that Kindergartner's were mastering.  Books that had lots of rhyming.  10 minutes....Lots of crying.   I just let him read.  Again, I never corrected him.  This is important.  The Sensory child is so concerned about failing, unable to move through mistakes,  that it can become a road block to learning.  So I made sure reading was an "error free" zone.

  At this point I started flash cards.  Twenty five a night..before reading.   I noticed  that flash cards were a breeze for him.  He could memorize, but did not have the patience yet for phonics.  That was okay, let him memorize....many words in early reading books are site words so I figured that  the more words he knew on a page, the more successful he would feel...can only lend itself to more success..  I also noticed that  he was extremely proficient at flash cards, when he read them one at a time.  However,  he struggled when it came to reading those same words in a sentence.....hmmmm....he was still too stressed to realize that he knew the words...that was okay, we kept going.  I eventually started putting his flash cards in five word linear groups, in sentence format.  This was a big break-through....it shifted him from reading one word at a time in flash card style and got him comfortable with reading in sentence format.....and then we were off and running......

     Eventually, Michael felt successful enough to start trying to sound words out.  Phonics.

    Twelve weeks later, ten minutes a night & flash cards, report cards came....I believe the words verbatim were, "Michael has made "extraordinary" leaps in regards to reading and writing".  "I can see how hard you have been working at home, Michael is now meeting 1st grade standards".  TWELVE WEEKS....TWELVE!!!!!!  We had accomplished in twelve weeks the same skill sets that other moms have been working on since they were babies...

     Three weeks later, I checked Michael's reading levels just tonight, and found that he is meeting all reading standards that he needs to meet by the end of 1st grade...  Eight weeks left, he is ahead of the game...  Imagine what we can acomplish in eight weeks.  HA!

     Don't misunderstand, I am not bragging....My point, My big lesson learned as a mom.  While I will never undermine the importance of reading with a child, working on these very important skills that every child must master, remember that it is also very important that with Sensory children, you must meet them where they are.  Meet there own personal & unique needs first.  The rest will fall into place.

     Michael no longer cries when he reads.  He exclaims, "reading is easy!".  It makes me cry.  I am so proud of him.  So happy to see him feel proud.....

     So these are my tips....I hope they help...

     Qannie 

    

    

       
    

    

   

    

Sunday, March 10, 2013

Sensory Processing Disorders: A Message of HOPE...

     Hi Mom and Dads,  It has been on my mind lately that I should write a message about hope.  You see, my kids and I have come so far.  We have achieved so many goals and cleared so many hurdles.  I feel compelled to share these not so small miracles with you.

     In my life, I have always felt that when God blesses you, it is important to share it.  Sharing his blessings I feel, is part of the package.  One of the reasons God sends them my way, the bigger picture.

     Hope.  When contemplating the best approach I should use to send a message of hope, I thought at first  about sharing all of my fears, tears, concerns, doubts.....everything.

     I thought that I would lead with these first paralyzing days of the past and segway into all of the insights and triumphs I have encountered as I  journeyed  into the world of Sensory Issues.  Pump you all up with positive expletives that would include,   "Don't worry", "Keep the faith", "It will all work out" kind of messages.

    Then I thought, No I think I would rather just recap and highlight my children's story. 

    After all, it is in their stories that hope is found.

     Michael.  Michael is my 7yr. old.  It was around age 2 that my eyebrows started to raise a bit.  By Kindergarten, age five, he was out of control, smart mouthed, contemptuous, behind in emotional/social/academic milestones.  Dressing issues.  It was at the start of Kindergarten which brought it all to a head, full throttle.  It was then that he truly unraveled, taking Michael and the entire family to a new scarier, deeply concerning place.  

     Full throttle meant  that he began hurting his twin brother Everett. He started throwing chairs across the room, lying, stealing, attacking us parents to the point that I had to body restrain him by wrapping myself around him until he calmed down.  I would sit him on the floor.  I would sit behind him and criss/cross my legs around him while simultaneously crossing  his arms around his body with my own arms just to keep him in place. I essentially turned myself into a straight jacket.  He would at that point, start slamming the back of his head into the front of my chest.  I started to keep a pillow on hand to cushion the blows as I was afraid he was going to break my chest bone.  Each time, when I had to do this, my tears would spill down my cheeks and land on the top of his head while I waited for it to end.  There were now holes in his walls, the tops of his dressers were destroyed.  The antique furnishings, which I imagined survived many happy childhoods now were defaced with deep angry scratches to the point that their entire finish was completely gone.

      I could not get this child to do anything. Not read, not write,  sit at a dinner table, the list was endless. The worst part of it all was that when I looked into my child's eyes after he did something wrong,  I could not find remorse. I loved this child. I can't even begin to tell you the endless tears I have shed over this child of mine.  Although I suspect some of you reading this are nodding your head right about now.

     I will never forget the day when Michael just pushed me to my end.  I was on his heels chasing him as he tried to run away from me.  He was half way up the stairs and I shouted out his name, "Michael", I screamed as I walked up to him as to tower over him.  He stopped, turned, and just glared at me.  Just glared.  A glare filled with so much anger, contempt, disdain.  "Michael", I said in a voice that I did not recognize as my own, my finger pointing directly in his face,  "Understand this now...YOU WILL NEVER BEAT ME. I AM BIGGER AND STRONGER AND SMARTER THEN YOU.  NO MATTER WHAT YOU DO OR SAY, UNDERSTAND THIS NOW MICHAEL, YOU WILL NEVER EVER WIN. YOU WILL NEVER, EVER, BEAT ME." 

      I looked into my sons eyes,  and for the first time, I saw his lower lip tremble,  His beautiful blue eyes filled with tears.  He just stared back at me, turned, and walked away. I shrunk down upon the stair and  I  cried, again for what felt like the thousandth time.  I too had now unraveled.  I was ashamed.

     It was time to call a doctor.  I did.

     I questioned, listened, read, tried, failed, tried again.

     That was about one and a half years ago.

     Today, Michael is thriving in first grade.   Michael is my child with a big heart and he has learned how to express it.  He is smart, sensitive, intuitive, thoughtful, funny...boy is he funny.  He is a child that is now  capable of showing empathy and compassion.  He has learned tolerance, emotional control, and self regulation.  He no longer cries when he dresses. Gone are his rages and destructive outbursts.  He has learned to use his words instead of his fists. Michael's world has become more organized from a sensory perspective.   He has found his smile, and it is a beautiful one.

     When we started this journey, I was disheartened, afraid, lost, confused and angry.  Today, I can see that our battle wounds are starting to fade.  Never to be forgotten, more a badge of honor.
    
.     I remember a moment in time when I first started this journey of trying to understand.  Michael was sitting across from me at the kitchen table.  In a moment of trying to transcend my love, to repair some of our tough moments,  I told Michael that I thought he was perfect.  His reply was so succinct...so right on.  Those blue eyes of his looked back at me,  straight in the eye and said, "Oh yeah?  If I'm so perfect then why are you trying to change me?".   It was at that moment, I realized that before I could hope to "change" him, I would first have to accept him.

     So as I end this post, I find myself having to confess that I have indeed lied.  For I truly can not end this story without saying to all of you...."Don't worry"  "Keep the faith"  "It will all work out".

     HOPE

     Goodnight,

     Qannie

    

Monday, February 25, 2013

Sensory Processiing Disorder


Thought For The Day:  When my child breaks rules or makes poor choices that I know are within his abilities to make better ones I will give consequences.  When he is demonstrating emotional outbursts such as temper tantrums, back talking, aggression, I will give him love, mercy and understanding.  For this is what he needs.  In these moments I will remember that it is not yet  within his emotional range to exhibit patience, tolerance, and self control.  It will be up to me to model it for him. Qannie



                                       

Thursday, February 21, 2013

Taking My Sensory/High-Strung Child Out Socially Q & A : Where do I take them?


Hi,
I really appreciate you offering your support and advice. I have a question for you: I want to take my son out to experience things outside of the home but that usually leads to over stimulation and results in a tantrum. I took him to Elmo live a few weeks back and he liked it but I could observe him struggling with the loudness of the live event and the lights and even the opportunity to touch the charters was very scary for him. Then I took him to an arcade ( Dave and Busters) which he loved but when it was time to leave he went into a violent tantrum which almost became dangerous in the parking lot!!
He is a very active and curious child so I do not want to keep him restricted to our home our and/or back yard but I do not want to overwhelm him either. A few years back he was enrolled at My Gym but he became too active over stimulated to the point where the in door play area became too small for him because he became a danger to himself and others by not being able to calm down and acknowledge dangers, like not running across the room when children are swinging.
I would like to take him to Sesame Place and the Sou cl Circus this spring but I am not sure. Where have you  taken your boys to for out and enjoy family fun and activities? 
Thank you,
 Mom who cares


Hi Mom, 

 Your son reminds me of my children.  I have twin boys, one hyper-sensitive, the other hypo-sensitive.  Both became over stimulated easily for different reasons.  To be honest with you, it sounds like your son is not ready for these types of venues. I as well tried my gym and for the same reasons, it did not go well.   My kids are now seven, and it is only now after 2yrs of a lot of hard work along with natural maturity that they would be able to manage things like  plays, organized sports  and loud flashy places.  Instead, I choose places that would be more suitable to their nature's. Places that did not require too much structure.  While peers of their own age were hitting  maturity milestones and better able  to handle sitting, waiting, and instruction, my kids just were not.  I had to accept that.  

 Swimming for example is a great place for kids with high-strung temperaments and sensory issues.  The water allows them to move about quite a bit as well as it slows them down and burns off allot of that energy.  Do you have a kohl's children's museum?  The inflatable jumpy places worked very well.  Not too loud, they are usually in warehouses that absorb sound and all the kids are running and jumping so your child should not stand out too much.  If it is not below zero, get him outside as much as possible.  The cold won't hurt him. No reason not to go the the park.  Sledding was great because again, that walk up the hill caused them to slow down and again a great energy burn. The zoo is another great place...room to run, educational, and open in the cold months.  When I picked places, my criteria was not too loud, not too flashy, not too much restriction or structure....Get on the Internet and find these kinds of places.  As a mom with sensory/high-strung kids, I at times felt disappointed that my choices were limited, and frequented the same four places over and over.  However, that being said, it is what it is so rather then just stay home, that's what I did.

  To this day, I ALWAYS give my kids a 5 to 10 minute heads up as to when we are leaving.  Even if your child does not understand time yet, the heads up might allow him to process the fact that his fun is coming to an end.  These kids have a difficult time with "stop" and "starts". Its a brain shift/maturity things.  Even if it does not work at first, keep trying.  It should eventually work.  

     Your child will get though this.  There will be a day that you are doing plays, movies, organized sports and so on. I remember being worried that my children were not receiving enough cultural or educational input  because of  our limited social choices.  It was to my great surprise that when my kids started Kindergarten one of their teachers told me that while they were a little behind in some of the academics, my kids were the "worldliest" kids in the classroom and she could tell that I did not just sit my kids in front of the TV.  She said "they know about everything!".  My point?  You yourself said that your son is curious...You would be surprised what he will pick up and learn from finding rabbit holes at the park, watching the construction workers build a road, ask you why the toilet is not working at McDonalds.  Your child will soak up the world and learn no matter where you take him.

 Meet him where he is. You and your child's outings will be more successful.

 One last thought, even though the places you pick will be more suited to his temperament, my kids still at times struggled.  Getting over-stimulated and a bit too rough with other children.....Mom's JUST loved coming up to me to tell me just how "out of control" or "evil" my children were.  I found that smiling patiently and giving them a well rehearsed 15 second explanation worked well.  (trust me, I was less then pleased to have to justify myself to others) But the reality is that others don't know you or your child and they will jump to the worst conclusion. Don't let this discourage you.   Truly, 9 out of 10 people understood. I hated having to do this, but it came with the territory.  

     I hope this helped.  I have worked so hard with my kids.  I have been fortunate to see the results pay off and share with other parents.  Anytime you have a question please feel free to email me. 

     Qannie

Wednesday, January 30, 2013

Sensory Issues: Finding Empathy for that moody disposition

     Sensory Issues.....A bucket of all different kinds of nuts & bolts.   Dressing issues, eating issues, maturity delays....There is a lot to take on as a parent when faced with this issue.

     The most challenging part of  Michael's Hyper-sensory issue was dealing with the effect that it had on his moods. Not only was it difficult learning how to help him manage his moods, but even more difficult understanding him and feel empathy.

     For the last couple of years when my Michael's Hyper-sensitive issues came to the for front, this is what he looked like much of the time:  Along with his other issues, he woke up with an edge. He was crabby, irritable, mouthy, and prone to temper tantrums. His tone was that of an insolent teenager.  It did not matter if I was asking him to pick up his toys or asking him if he would like some ice cream, it was always the same: his responses came in this snappy, edgy, disrespectful tone that just cut right through me.

      It was so disconcerting because I did not talk to him that way, I did not teach him this. So why?  Why would this child be so disrespectful to me?  It really got under my skin. Why would this child treat me, the very one who was trying the hardest to make his world a more harmonious and sensory integrated place?

     I tried everything. Talking to him, coddling him, ignoring him, reprimanding him, behavior charts, you name it.  Nothing seemed to work.

     Understanding this was just almost impossible.  Over time, when it appeared that there was not a thing I could do about this I just got angry. Angry and at times resentful.

      Then one evening  it came to me. Clear as day.   It came to me in  the way of a hot, itchy,  woolly, sweater.  They say you should not judge someone until you have walked a mile in his shoes...  Well try walking that same mile with an "itchy woolly sweater on a 90 degree day.

     I NOW REFER TO IT AS MY "ITCHY WOOLLY SWEATER OPRAH AHA MOMENT"

     I was out to dinner with my friend.  We were eating Sushi.  We were drinking wine.  ( I love Sushi, and I love wine).  She was one of my favorite friends, I was looking forward to this night and I should have been having a great time. However, I was not.  There was a problem.  That morning I came across this woolly sweater that I could never remember wearing so I put it on.  That was the problem. It was hot, it was itchy, and I was miserable.  As dinner progressed, I became more and more miserable.  I could not enjoy my Sushi, I could not enjoy my wine, and I could not enjoy my coveted girl talk with one of my best friends.  I really just wanted to go home and TAKE OFF THIS SWEATER!   I was trying my best to hide my discontentment, but my friend, whom can read me well, finally said, "what is wrong with you? Is everything okay? Your not yourself".  I responded, rather heatedly, "It is this sweater! It is driving me crazy!" I took a few moments to express myself...#!!%##*!!"

     In that same moment I stopped..."OMG!", "Michael!"..."Huh?", my friend was clearly puzzled.  "Michael!, this is how Michael feels!".

     In a New York second I had a taste of what it might feel like to be Michael.  My Michael with sensory issues.  My Michael who is Hyper-sensitive. Who had been expressing  displeasure with his body's reaction to the world for a long, long time.  The world to him often, to LOUD, to HOT, to TIGHT, to LOOSE.

     He has been walking around in this "Itchy woolly sweater" for years, with a sweater on that he could not take off at the end of the day... and I wanted him to smile.

     I now understood why sometimes even when we are at his favorite place, doing his favorite things, Michael does  not feel like smiling.  Why, sometimes, when he wakes up in the morning, he is snarky, and irritable.  Why there are times that he just can't pull off what I am asking of him.  No matter what the circumstances are.

     We have come a long way in the way in helping Michael get through the world in a more sensory organized way.  We have our good days, and we have our could be better ones.

     But on those days, when my son comes in the door looking and talking like a disgruntled, mouthy kid...before I react, or judge him too harshly, I ask myself, "How would I feel right now if I had to put back on that itchy, woolly sweater?...

     EMPATHY.....It can come packaged in the most extraordinary ways....

    QAnnie

     

       

Sunday, January 20, 2013

Children's Temperaments: Meeting your child where he is...Part 1


     Inborn Temperaments:  The intrinsic, innate, hardwired set of personality traits that your child came into this world with.

     We all come into this world with our own "stuff".  The stuff that makes us unique.  Temperaments that determine whether we will be "risk takers" or "tentative".  Shy or outgoing.  Patient or easily frustrated.  Naturally independent, or on the needy side.  High strung or calm. Energetic, a couch potato, or somewhere in-between.  The list can go on and on.

     Now don't misunderstand, I am not implying that these traits are completely cut in stone, or so permanently ingrained that they are unable to be "tweaked".  I like to think of a child's inborn "blueprint" as a starting point.  Desirable or undesirable, the set of personality traits that your child brings with him into this world is truly where your work as a parent starts.

     I think it is most important to understand just what your child's set of blueprints look like.  To best meet their needs, you must. 

     The world of parenting has really not changed much over time in the sense that most of us really want what's best for their child.  Parent's naturally want to see their child grow in all areas: physically, emotionally, mentally, spiritually.  Mainly, we want for our children to meet their "full" potential.  Each generation seems to bring with it their own ideas on how best to achieve this goal.

     These generational parenting models are embraced socially, academically, culturally, adopted and embraced by most institutions of the current time.  Some more notable models were, "spare the rod & spoil the child".  Then their was the parental paradigm  that approached parenting from a standpoint of understanding your child's "stages of development".  There was the focus on "self-esteem" model, geared toward not crushing the child with to many boundaries or emotional restraints.  Again, there have been, and always will be a current socially set of parenting "do's & don'ts" for each new set of parents to glean wisdom from.  You will find these little pearl's of wisdom from best selling books, coffee clutches at your local playground, and of course, even some of your own family members....

     Most parenting models I can't argue with...completely.  After all, they really do often have your child's best interest at heart.  I will say this though....there is no "one" way to raise a child.  There is no "foolproof method".  There is no one parenting model that is able to completely meet the needs of every child.  Every child is different.  So ask yourself, if that is true, how could one set of child rearing viewpoints be good for every child?

     The wisdom of parenting...the ability to extract from the good the things that work for YOUR child, and discard the rest...often despite what all the books and experts are telling you.

     It is very easy to buy into a set of current parenting guidelines because everybody is telling you that is what you must do and that is what works.  In fact, indeed, you will see many examples of why the current paradigm works...try them...if they work great...keep doing what your doing.  If it is not working....Chances are high that the current parenting method does not meet your own special unique child's set of needs.  So discard them, tweak them, find what works, and do that instead. (a word of caution....the pressure can be so great out there by the "system people" that you will doubt yourself....DON'T).

     So I say this again...Get to know your child's inborn temperament.  It is vital.  If your try to mold your child with parenting methods that don't meet his/her needs, I promise you, they won't work.  It can in fact make things worse. If you try to mold a child into something  that is not of their inherent temperament, you will fail.

     Your child is your child.  He is not Johnny or Ben or Sarah or Susie.  They don't have those other children's temperaments.  They have their own set of blueprints.  So don't try to build an apartment building with a set of blueprints that call for a single family home.  Get it?

     It took me awhile as a first time mom to learn some of this.  We can easily fall into the trap of trying to be the perfect mom, trying to make the perfect child.  A humbling lesson for me.  The reality is I am not perfect, and nor is my child...how boring would that be anyway.

     My next post I am going to talk more about some inborn traits. What can they look like?   Can we work with the undesirable ones that may be hurting your child's potential (or driving your crazy).  Understanding that every trait has a spectrum....a range.....that is indeed moldable, and also understanding what your child's unique range is in that moment and at that time of his life.

     QAnnie