Tag Archives: Brain

Catching ZZZs

24 Nov

I don’t know about you, but I am an absolute bear if I don’t get enough sleep, or even worse – if my sleep is interrupted – Beware!  My husband learned this the hard way early on in our relationship, when I lashed out at him like some evil, snaked-tressed Medusa after he woke me up one too many times during a long, late-night car ride to Washington, DC.  I shall never forget the look of astonishment, fear and horror on his face as he witnessed his beloved turn into a raging lunatic in the night.  (As we were still just dating at that point, I’m surprised our couple-hood lived to see the light of day!  It is truly a testament to his equanimity…)

It’s no surprise really…We are bombarded daily with articles and news reports about how vital sleep is for mood, as well as for health, learning and development.  So, we all agree that sleep is a great thing, but still many of us are unable to achieve that minimum daily requirement of zzz’s.  And children are no exception.

Right from birth, my son Gregory had difficulty settling himself.  Whereas his older brother Daniel had slept for four hour stretches his very first day home from the hospital, as a newborn Gregory woke up and needed to be cuddled, soothed and/or fed every hour.  It was exhausting (and helped produce some repeat performances of Medusa-on-the Rampage, BTW), but eventually we got him to sleep for as much as three hours at a time.

When Greg was 2 ½, we moved him out of the nursery, into his own room and into a ‘Big Boy Bed’.  (His sister Sarah was on the way and we needed the Baby’s Room for her….)  Gregory loved his new room, decorated with cars and trucks, but the transition was not an easy one for him.  (and in hindsight, we could have handled the change much better…live and learn….)  In any case, Greg continued to have great difficulty settling down for the night.  He would happily get ready for bed and eagerly pick out a book for Mom or Dad to read to him.  But after being tucked in and kissed good night, he would toss and turn for hours.

When Barry and I would head to bed several hours later, Gregory was often still awake, lying in his “Big Boy Bed” muttering to himself, unable to let go of the world and fall into peaceful slumber.  And when he did eventually sleep, it was anything but peaceful, fraught with restless dreams and late-night stirrings. He would awake crying frequently and I would repeatedly have to go in to settle him.

How do I know all this?  Well, Gregory’s room is right next to the Master Bedroom.  And that adorable red, bead-board “Big Boy Bed” that I had purchased to go with his charmingly decorated new bedroom, squeaked and creaked with – every – single – movement!    No, I am not exaggerating.  (Boy, did I have buyer’s remorse over that purchase!)  I am a very light sleeper, and I heard Greg’s bed ‘musical’ constantly through the night – night, after night, after night…

We tried many things to try to improve his comfort and thereby hopefully his sleep.  We put up side rails; we added a night-light; we surrounded him with pillows and stuffed animals; we put on sleepy ‘mood’ music; we tried a wave sound machine; we read ‘sleepy’ books to him; we even had his big brother sleep with him…All to no avail.  He continued to be a very restless, problem sleeper – and time went on…

Melatonin Supplementation

Shortly after figuring out that Gregory has Asperger’s Syndrome, I read that many people with AS suffer with these same sleep issues.  Apparently, children on the spectrum typically experience circadian rhythm dysfunction and abnormally low levels of melatonin.

I began to do research and came across a study in the Journal of Clinical Sleep Medicine on the use of the natural hormone melatonin to improve sleep of children with autism.  This study was a 4-week rigorously scientific trial, where either 3 mg of melatonin or a placebo was given to 18 children with ASD.  The study supported the efficacy of melatonin treatment for sleep problems, with minimal, if any, side effects.  Now this sounded promising!

I did additional research, OK’d it with our pediatrician and then set out on my own subjective clinical trial.  I decided to start with 1 mg of melatonin (as opposed to the 3 mg in the study), to try to find the minimal effective dosage.  I also decided to include my older son Daniel in the test, because due to his ADHD he too, has difficulty falling to sleep.  (Unlike Gregory however, Daniel sleeps like a log once he finally does fall asleep.  One time a carpenter was banging away, installing crown molding right outside his bedroom, and Daniel slept right through it all….)

At bedtime, I gave both boys 1 mg of melatonin and then observed the results.  On the very first night – success!  Greg and Dan both fell asleep within about 20 minutes, which was a dramatic improvement.  But even better, Gregory experienced a much more restful sleep.  He didn’t toss and turn, or wake up nearly as often throughout the night.  The next morning, both boys woke up normally, and did not show any signs of grogginess or other ill effects.  I was ecstatic!  Add one to the arsenal of sleep aids!

Massage Therapy

About this same time, I was speaking with a behavioral therapist who uses both music and massage therapies in working with autistic children.  She showed me some basic massage techniques to help reduce stress. (For example:  Press the palm of your one hand firmly against the person’s chest, while your other hand slowly and firmly slides down his back, from between the shoulders blades to the waist.)   We tested it out on Gregory…He loved it!  It seemed to calm and relax him, and I could actually see his shoulders dropping away from ear lobes as he de-stressed.  We began using therapeutic massage anytime Gregory started getting upset or overwhelmed and it significantly helped him to regroup and manage his behavior.

Seeing how well massage worked during stressful times, I decided to try it at Greg’s bedtime as well.  As part of his nightly routine, I would give him a back rub – using long strokes and firm pressure (not too hard or too light, which were both uncomfortable to him.)  As I massaged, we would talk a bit about his day and what the plans were for tomorrow.  Stroking his back, I would quietly ask him if he could feel all that TLC (which I had to define for him as ‘Tender Loving Care’) going from me to him.  He loved it – and so did I!  Best of all, it worked to improve his sleep.  As the tension melted away from his body through my loving touch, Gregory was able to go to sleep and stay asleep so much easier.  Add another trick to the arsenal!

Today, that bedtime massage is a well-loved ritual that we do each night – with all three of my kids!  Greg will actually come and ask me for his ‘special massage’ and it has become a very special bonding time.

Although I didn’t use a scientific approach or control variables in my ‘studies’, I believe that melatonin and massage both have had very favorable results in improving Gregory’s sleep patterns.  Together, they have helped him fall asleep more quickly and stay asleep longer, enabling him to enjoy a more restful, recuperative night.

After a few months, I stopped giving the melatonin at bedtime, to test the supplement’s true impact….and to my surprise, the benefits remained!  Somehow the improved sleep patterns of the previous few months had retrained Greg’s mind/body to improve his circadian rhythm function.  He had learned how to settle himself and was now relaxed enough to stay asleep.  I couldn’t be happier with the results and these days, we only rely on melatonin periodically, such as during travel or when sleep eludes him for some reason.  Even on an ad hoc basis, melatonin continues to work its wonders.

As a result of his improved sleep, Greg’s daytime moods and resiliency have improved dramatically too.  He is less stressed and is able to cope much better with the world around him.  And I’m happy to say – so am I!  I too, am sleeping better and Mrs. Medusa rarely makes an appearance these days – at least not due to lack of sleep!  🙂

 

Here’s a link to another recent study supporting the use of melatonin for children with autism:   http://www.autismspeaks.org/science/science-news/more-evidence-melatonin-eases-autism-associated-insomnia?utm_source=social-media&utm_medium=E-speaks&utm_campaign=121611

 

Fix Autism?

28 Sep

If we could fix Autism, would we?  I recently attended a conference where a geneticist presented some very exciting advances in current autism research – leading to just that possibility. 

Dr. Alexander Kolevzon, from the Seaver Autism Center at Mount Sinai School of Medicine, stated that scientists have identified the gene responsible for Fragile X Syndrome (FXS) – a rare genetic variation which accounts for about 2% of autistic cases[1].  Fragile X is tied to a single gene mutation whereas, many other Autism Spectrum Disorder (ASD) types may be more complex and based upon a combination of genes acting together.  Dr. Kolevzon proceeded to say that researchers are currently able to identify the genetic causes for up to 40% of all autism cases.  (Autism, defined here, includes all ASD, including Autism Disorder, Aspergers, PDD-NOS, etc. ) 

Within the autism research community, autism is generally accepted to be a genetic condition with environmental risk factors.  This genetic predisposition to autism, coupled in some cases with one or more environmental factors (yet to be determined…perhaps maternal factors, infections or toxins) at key points in the growth of the fetus and young child, may lead to the development of autism.  So, there is a long way to go before all the causes are understood, but identifying the underlying genetic components is a huge step forward.

The Fragile X gene (FMR1) is a DNA mutation which in effect, turns off the gene.  “Normally protein products of FMR1 act to dampen the synthesis of proteins at synapses…  Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections [within the brain] do not develop normally.”  Researchers are now developing medication to restore “normal synaptic protein syntheses and improve function.”[2] 

Based on this ground-breaking research, Fragile X medication is currently undergoing trials in humans with promising results.  Medication and/or genetic therapies for other types of autism will presumably follow thereafter…

How very exciting – I was thrilled to hear about the progress!!!  I choked up, thinking about some of those parents who now have hope that within the foreseeable future, they might be able to ‘reach’ into their severely autistic child’s locked-in world and perhaps communicate with him or her for the first time.  And how amazing it would be for the child (by then probably an adult) to finally be able to break out of his/her shell and interact with the world at long last.  I can’t imagine anything more thrilling.

But then I started to think more deeply about the implications.  Upon initial hearing, one might think, “Fabulous!  Let’s ‘fix’ things!”  However, aside from the significant moral and ethical considerations of gene therapy (which I won’t go into here…), these autistic individuals would be dramatically changed at a very core level – they may lose or change the very essence of themselves – potentially resulting in a radically different personality, skill set and perspective on the world.  Would they want that?  It might be great for the parents to finally have a neurotypical child, but given the choice, would the autistic person choose this for him/herself?  Would that even be a good thing – for the individual?  For the family?  For society?   

Would I want Gregory to undergo a similar therapy to correct his Aspergers?  Sure, he might become more ‘normal’ in his behaviors.  And yes, life would most certainly be less confusing and difficult for him, but he wouldn’t be ‘Gregory’ any more.  Now, I’m sure the NT version of Gregory would still be a great kid, but I would miss my lovable, quirky, funny, amazing Aspie son.  No, I decided quickly, I would NOT want Gregory to undergo gene therapy, if and when it becomes available.  (Having said that, the choice would ultimately be his to make.  I would respect his decision, but I would mourn the loss of ‘my’ Gregory if he opted to try it.)

So, there is no ‘right’ or easy answer and each situation would need to be evaluated on its own merits.  For parents of severely autistic children – those who are non-verbal and not able to function within society to any significant degree, perhaps genetic therapy would provide significant benefits.  But for individuals on the high-functioning end of the autism spectrum, this genetic ‘fix’ may not be the best choice.  It is an intensely personal decision and the trade-offs, risks and rewards of gene therapy would need to be carefully weighed.

Many Aspies don’t feel that their Aspergers is a disability at all, but more of a difference – if not an outright strength!  (See Wrong Planet.com)  Entire forums are dedicated to accepting and appreciating the Aspie brain – for all its unique powers and perspectives – not trying to FIX it!!!

Dr. Temple Grandin, the renowned autistic author and animal scientist, believes that we, as a society actually NEED Aspies among us.  These are the people who are able to look at the world ‘differently’ and come up with new solutions to problems.  They are the individuals whose analytical, detail-oriented, precise talents and single-mindedness can hyper-focus on specific problems in order to research and solve complex technical or scientific issues.  In fact, it has been said that most of the technology (e.g. Bit Torrent) we enjoy (or hate, depending on your perspective!) today would not exist, were it not for AS.

“Some of our world’s finest minds, inventions, art and ideas belong to people with autistic traits.”[3] Among those fine minds that are thought to have had AS are:  Albert Einstein, Vincent Van Gogh, Gregor Mendel, Thomas Jefferson, Carl Sagan, Wolfgang Amadeus Mozart, H.G. Wells, Charles Darwin and Isaac Newton – very good company indeed!

In spite of having significant challenges with social skills, physical coordination, emotional regulation and sensory integration, Gregory is a remarkable, bright and talented person.  He is potentially one of those ‘great minds’ of the future.  He has many strengths and ‘uniquenesses’ that I would be loath to ‘normalize’ by fixing his Aspergers.  And Gregory too, is quite happy with his AS.  Yes, he acknowledges that it does make certain things more difficult, but it makes some things easier too.  He has accepted his condition with grace and dignity – focusing on the strengths it provides.  We love Gregory the way he is – in all his quirky glory….and so does he.

So, after weeks of focusing this blog on the challenges facing Gregory and our family, today I celebrate the many strengths and unique perspectives of my Aspie.  I wouldn’t change him for the world…


[1] Alexander Kolevzon, MD, “Advances in the Genetics of Autism:  Implications for Treatment”, 1st Annual JCC Rockland & Parent Support Network Conference:  Current Autism Research:  Practical Strategies for parents and Professionals – Meeting the Needs of Children and Youth on the Spectrum, (West Nyack, NY, 2009).

[2]Clinical Tests Begin on Medication to Correct Fragile X Defect,” US Department of Health and Human Services, National Institutes of Health, November 2, 2009.

[3] Fitzgerald & O’Brien, 2007 

The Hidden Curriculum

21 Sep

In the Autism/Aspergers world, I’m what is known as a neurotypical or NT, while my son is known as an Aspie or Aspergian.  Although some (like my older brother!) might argue that I am anything BUT ‘normal’, my brain does function fairly typically.  The brains of people with Autism and Aspergers however, do not, and this enables them to see the world in atypical ways.  As such, in my efforts to parent successfully, I’ve had to adjust my NT thinking, to try to see the world through my son’s eyes…with his Aspie brain and unique perspectives on life.  And this has taken some getting used to….

Without realizing it, neurotypical folks constantly, instantaneously and seamlessly survey the written rules or ‘hidden curriculum’ of every environment and every person [we] encounter, to make decisions about how to proceed successfully within a given context.[1]

The hidden curriculum refers to a set of rules or guidelines about social behavior that are often not directly taught.  It is assumed knowledge that helps lubricate the cogs of society and enables groups of people to live, work and interact together harmoniously.  These rules are wide-reaching and complex, covering a variety of topics from table manners to slang words, dating protocol to classroom etiquette…and much more.  Virtually every aspect of our daily lives is based upon a foundation of hidden curricula – widely-held assumed knowledge that we probably don’t even remember learning.

We don’t recall learning most of these rules, because “everybody just KNOWS that!”  We NTs are unconscious social navigators and learn naturally through observation and intuition.  We take it for granted that all relatively smart people should be able to acquire these skills in the same manner.  Unfortunately, for those with Aspie brains, these skills are not acquired naturally.  In spite of being potentially brilliant in other intellectual arenas, they have what is called social-cognitive learning disabilities when it comes to the hidden curriculum

An example of this lack of common understanding occurred recently in our home.  Gregory had been dared to do something stupid [my words!] by another boy, so he did it.  When I questioned Greg about why, he answered, “because he dared me…I had to.”  But, instead of reprimanding him for making a bad decision, I backed up and reconsidered.  “Greg, just because someone dares you to do something, doesn’t mean you HAVE to do it.  You can CHOOSE to accept the dare or not.”  Greg looked at me in amazement…”You can?”   He had totally misunderstood the social rule and believed that there was no option with a dare – no matter how stupid.  I shudder to think what might have happened if he still believed that ‘rule’ into his teenage years…Yikes!!!

So, this deficit can create significant problems.  The inability to develop adequate social skills and interpret social nuance of those around them brings life-long challenges to Aspies.  We, as NT adults in society, are willing to explain and excuse social ‘misbehaviors’ in very young children, but as they get older, kids and certainly adults are expected to know these unwritten, unspoken items of general understanding.  How do we react when someone breaks the ‘social code’?  We are shocked, upset, angry and perhaps even disgusted.  “How rude!” or “Weirdo” or “Can you believe this guy?” rings through our heads.  Because, breaking a hidden curriculum rule can make that person a social misfit or even a social outcast. 

What can we do to help those with social-cognitive deficits?  These individuals must learn the hidden curriculum by direct instruction versus intuition.  Parents and educators must become ‘social anthropologists’ to first determine various hidden curriculum items and then find ways to teach them.  This is not an easy task, because we assume everyone knows the assumed knowledge!  We literally don’t know what to teach them, because we don’t know what we know…

One of the primary ways to recognize an example of hidden curriculum is when an error occurs.  When a teenager addresses the principal as “Dude” or when a young man at the urinal drops his pants all the way to the floor.  When a girl texts using ALL CAPS and the receiver thinks she is shouting at her.  When a man in an office talks over his boss to correct the boss’s ‘error’.  When a woman talks loudly in church or during a movie….you name it  – There are rules for just about every interaction we have on a daily basis.  And when a rule is broken, people notice.

To make things even harder for Aspies, the hidden curriculum is not just vast, but it is complex and elusive as well.  The rules change across age, gender, who you are with, culture, environment, etc.  And to add another layer of complexity, most Aspies have difficulty generalizing, so what they have learned for one situation may or may not be carried over to a similar situation – the hidden curriculum rules must be explicitly taught for each scenario!

There are a variety of methods that may be used to help your child acquire unwritten social knowledge, many of which you can read about in available reference material.  One fabulous book, from which I gained my first insights into this area, is called The Hidden Curriculum by Brenda Smith Myles.  Here are a few methods from the book that I have employed successfully with my son:

1.  Safe Person

Identify one or more ‘safe people’ at home, school, camp, etc. who can help your child with Hidden Curriculum questions.  Your child should trust this person and be willing to ask about social questions.  This parent, teacher, mentor or close friend should understand the deficit and be willing and able to provide accurate, clear clarification to the meaning of words, phrases and situations.

2.  Social Narratives

Social narratives describe social cues and appropriate responses to social behavior and are useful in teaching a new social skill in advance of the situation.  Social narratives often use pictures or cartoons to promote self-awareness and self-management.  The most popular social narrative type is Social Stories by Carol Gray, which prescribes a specific framework for the narrative.

3.  Social Autopsies

The renown educator Richard Lavoie developed the concept of social autopsy to help students understand social mistakes – after the fact.  This method clarifies what exactly happened and then enables the child to see the cause/effect relationship between his behavior and people’s reaction to it.

4.  Direct Instruction

The direct instruction method is the one that I use most frequently in our daily lives, albeit informally.  Through direct instruction the teacher models (or states) correct behaviors and the students practices correct or alternative behavioral responses.  One great tool for direct instruction is the Hidden Curriculum One-A-Day Calendar for Kids by the Blackwell Family.  For each day of the calendar year, there is one specific need-to-know lesson.  In our home, we read the calendar item at dinner time and then use it as a jumping off point for discussion and explanation.

 

These days, I often explain situations and teach the unwritten rules of our daily lives.  I am never sure how much Greg has absorbed about the hidden curriculum on his own, so I explicitly try to help him “navigate body language and social mores in the uncharted areas between the words.”[2]  I guess I’ve been a bit over zealous lately however, because the other day Greg groaned and said, “Mom, can you please stop making everything into a lesson!”  Note taken!

Understanding the hidden curriculum is vital to the acquisition of good social skills, independence and a fulfilling life.  Most of us learn these rules naturally, but Aspies need a road map to our complex, elusive NT social world.  So please – let us all practice tolerance.  Let’s open our NT minds and try not to judge ‘misbehaviors’ too quickly…. That ‘rude’ person may just be an Aspie – seeing the world a little differently.


[1] Brenda Smith Myles, The Hidden Curriculum:  Practical Solutions for Understanding Unstated Rules in Social Situations (Autism Asperger Publishing Co., 2004), p. 1.

[2] Stephen M. Shore

To Tell the Truth

17 Aug

 “Greg, the doctor has discovered that your brain does not work the same as most people’s…”  That is how the discussion with my 8-year-old started…

There is much debate about the age at which your child is ready to learn of his diagnosis.  After all, you want your child to have good self-esteem and a carefree childhood; why worry him already?  Since every situation is unique, there is no ‘correct’ answer to this valid concern.  But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…

If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability.  You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.

For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically.  I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay.  I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?

But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’.  He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics].  And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation,  “You know Mom, I’m not like other kids.”  Pressed for more, he responded, “We just don’t think the same.”  But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me!   I just can’t….can’t….can’t help it!”

In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd.  But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.

So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news.  I first shared the diagnosis, along with some educational material, with our family and a few close friends.  I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory.  I also knew that Barry and I could definitely use the emotional support of our relatives and friends!

After thinking long and hard about it, I also shared the news with Gregory.  Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information  comforting, rather than disturbing.  I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS.  So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:

“Gregory, you know how we’ve been taking you to lots of different doctors lately?  Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.”  Greg looked shocked, but since I was calmly smiling, he was open to hearing more.  “That is good news and bad news,” I said.  “The good news is that one part of your brain is really, really smart.  The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.”  Gregory nodded his head, acknowledging these troubles.  “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.”  Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile!  Phew!!!  I then presented him with a cute little book for kids, entitledCan I tell you about Asperger Syndrome? so he could learn more about the disorder.

To be perfectly clear here, most people do NOT have this discussion with their young kids.  I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability.  But I am convinced that it was the right thing to do for us.  Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through.  It validated his feelings and provided him exclusive membership in a special group of people.  And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor.  Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors.  We no longer heard the distraught, “I can’t….can’t….can’t help it!” 

Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress.  We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together.  And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited.  Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.

Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially.  That acceptance, along with numerous programs, has enabled Gregory to grow into himself.  He is now relaxed and happy – most of the time!   He is a beautiful, bright, talented, funny 10-year-old boy.  And oh yeah, he also happens to have Aspergers Syndrome.


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