Tag Archives: Neurological Disorder

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

 

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

A+ for the Teacher

24 Aug

From my years as a Project Manager, I’ve learned the importance of teamwork for a successful outcome.  When I first faced the unknown obstacle of Gregory’s Asperger Syndrome, I tackled it the best way I knew how – with my ‘business analysis’ hat on to determine the best way to help Gregory improve his behaviors and coping skills.  I researched as much as I could and then turned to recruiting key players within the school to become part of our ‘team’ to address these issues.

We were very fortunate that Gregory had a wonderfully experienced, nurturing woman as his 3rd grade teacher.  Mrs. A had been working hard to help him, relying on her instincts, since we didn’t yet understand the issues.  She was in fact, one of the people who drove my search for answers, after she made an insightful comment about Greg, “I think there is more going on here [than Tourettes].  I have never seen a child be so hard on himself.”  Mrs. A would be the first prospective ‘team member’ that I approached.

The Monday after my fateful “Date Night Diagnosis” [see previous post], I presented Mrs. A with my suspected discovery.  She wasn’t very familiar with AS, but she was thrilled that we had found a direction.  She immediately wanted to know what she could do to help, so I provided her with a small booklet entitledSimple Strategies That Work by Brenda Myles.  I had my first team member on board… We were off and running!

In the weeks that followed, we initiated the IEP [Individual Education Plan] process and shared the news with other key personnel in the school.  Our team was shaping up nicely, and as more and more information was shared with the various team members, strategies to support Greg within the school environment started to take shape.

Once Greg’s condition was officially diagnosed by the neurologist, I confirmed this with Mrs. A.  Then she asked, “How would you feel about sharing Greg’s condition with the rest of the class?” I was shocked!!!  Why should I further ‘label’ my son, who was already struggling with his peers?  “I think it might help them understand him” she continued.  I wasn’t comfortable with the idea, but I said that we would think about it.

I pondered the question…  On one hand, I am a proponent of ‘knowledge is power’, so surely it would be positive to share the information?  And my business experience further supported the idea of sharing information across the team…but were Greg’s classmates really part of his ‘team’?   Would this just give them ammunition with which to torment him?

I tried to put my mothering instincts aside to think more objectively:  If my child has already been unofficially labeled as ‘weird’ or ‘different’ by other kids, teachers and adults, then an official ‘label’ can only help matters.  Knowledge of his diagnosis might help deflate negative judgments and promote acceptance of his problematic behaviors.  I felt sure that Greg’s classmates had already unofficially ‘labeled’ him in their minds, so sharing the official diagnosis would be positive, right?

Gregory was already aware of his diagnosis and was a key player on his ‘team’, so following my belief in sharing information, I decided to discuss the question with him directly.  I told Greg what Mrs. A had suggested and why, and then asked how he would feel about that.  He thought about it for a minute and then slowly answered, “I think that would be OK.”  I asked him if he was sure that he wanted the other kids to know about his AS and he said, “Yes, they might understand me better.” Alright….if he was comfortable with sharing the news, then maybe I should be too….

I then asked him if he wanted to be in the classroom while Mrs. A talked to the kids.  As an alternative, Mrs. A had offered that he could help out the Kindergarten class with a project if he preferred.  Greg was excited by that prospect and opted to help the Kindergarteners.  So, we had a plan…and Gregory had surprised me once again by his open acceptance of his condition.

The day came when Mrs. A spoke to the class very sensitively about Gregory’s syndrome.  (I was a nervous wreck all day!)  She started by talking about how each of us is different and that some people have certain problems, like allergies or poor eyesight.  (She used herself as an example, because she has both!)  Mrs. A then described, at a very high level, some of the things that are difficult for Greg, and how the class might be able help him during those difficult periods.   The kids not only listened, but were amazingly positive.  Eager to show their new comprehension, they exclaimed, “Oh…THAT’S why he does” such and such behavior…  And then the class brainstormed ideas on how they might support Gregory during his tough times.

I have to admit that it was a bit of a stretch for me to extend the ‘sharing of information’ to kids, but I accepted Mrs. A’s suggestion and followed Greg’s lead.  After school Mrs. A assured me that it had gone even better than she expected.  “The kids were SO accepting!” she marveled proudly.  I’m sure the manner in which she presented had much to do with their response, and I give her full credit for its success.

And a complete success it has turned out to be!  Now, instead of looking at Greg oddly as he retreats under his desk during a period of stress, some of his classmates will quietly kneel down to his level and try to calm him down.  When they see him starting to get upset about something, they tell him, “Don’t worry Greg.  It’s OK.”  When he is in tears about some disappointment or frustration, the kids (both boys and girls!) check on him and try to cheer him up.

I witnessed it myself one day….and was awed by the kindness and sensitivity of his peers:  I happened to be at the school playground for pick-up a few minutes early that day.  Greg’s gym class was working on the Presidential Fitness module, and had just done the mile run.  Greg, not particularly physically strong or coordinated, felt that he had ‘failed’ the test by not achieving the desired speed.  He was sitting on the playground sobbing – feeling like a loser.  One by one, a boy or a girl from his class approached him to see if he was okay and/or to try to cheer him up. “Greg, are you ok?” asked one concerned boy. “Don’t worry Greg, I didn’t make it either.” soothed one girl.  And then the ‘pièce de résistance’, a girl who had previously teased and tormented Gregory repeatedly, approached him.  I held my breath, afraid of how she might ridicule him and plunge him deeper into his emotional abyss.  But no, she kindly said, “It’s OK Greg.  You’ll do better next time.”  I was dumbstruck….  Tears welled up in my eyes, grateful for the kindness of these children, who had been lead to understanding and acceptance through the guidance of their inspiring teacher.  Thank you Mrs. A – You’re the MVP of our team!

 

No one has yet fully realized the wealth of sympathy, kindness, and generosity hidden in the soul of a child.  The effort of every true education should be to unlock that treasure.               – Emma Golmam

 

 

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.


Date Night Diagnosis

10 Aug

I’ll start by saying that I’m no expert on autism and that there are some really great resources out there – on the internet, in book stores, at seminars and colleges, etc. with insights and knowledge provided by experienced and credentialed professionals and documented studies.  With 20-20 hindsight, I wish that I had known to investigate these sources a whole lot earlier in my son’s life.  It would have saved us thousands of dollars, multitudes of questions, years of anguish…

In any case, I didn’t know any better, so when my previously loving 2-year-old son Gregory started ‘rejecting’ me and waking up screaming in terror/anger/frustration in the middle of the night, I was lost for an explanation.  I tried to reach him, to calm him, but he shut me out; he wouldn’t let me touch him.  I did what my mother-instinct told me to do…Night after night, I grabbed hold of him and held him firmly against me (fighting, screaming and kicking the whole time), talking quietly into his ear until eventually he ran out of steam and quieted.  Of course, Greg couldn’t tell me what was wrong, and even when he eventually lay his tear-stained face back down on his pillow, he wouldn’t acknowledge me.

I cried myself to sleep too…my poor baby.  We had never experienced anything like this with his older brother, Daniel.  What was so wrong?  What could I do for him?  Why was he in so much pain? 

Having just given birth to our third child, our lovely girl Sarah, I suspected that Gregory might be reacting to her arrival with jealousy.  Perhaps he felt replaced or betrayed by my attention to this new loud, smelly ‘thing’.  But if so, what could I do about it?  So I started reading books about sibling rivalry.

First, we tried to make sure that Greg received lots of one-on-one attention – from both his parents.  Then, I tried talking to him about the problem and trying to give him names for the feelings that he was experiencing – encouraging him to express himself.  But he still wouldn’t or couldn’t say.  Then, we tried to involve him in helping us care for his new baby sister, but he had absolutely no interest.  To him, she didn’t exist:  when he drew pictures of his family, it was always just Mom, Dad, Daniel and Gregory – no Sarah!  When someone talked to him about Baby Sarah, he just turned and walked away. 

And Greg became increasingly solitary, smiling rarely, interacting less.  His body-language changed, to where he appeared very tense, with his shoulders hiked up to his earlobes, poised on his tip-toes, with his hands clenched tightly.  If someone or thing surprised him (even with a slight touch on the shoulder), he reacted aggressively, as if trying to protect himself from attack.  And that is indeed, how he appeared – as if he was about to be accosted at any time – always on high alert.  It saddened me to see my little boy so tense and nervous, unable to relax – even in his sleep.

When those efforts proved ineffective, I spoke with the pediatrician.  Now, don’t get me wrong, we LOVE our pediatrician, and one of the reasons for this is that he doesn’t over-react to nervous mother worries.  So when I explained my concerns, the doctor reviewed Greg’s growth (which was off the charts in both height and weight ever since birth), performed the usual physical and developmental assessments and determined that it was ‘just a phase’ – “He’s doing fine.”  I tried to be reassured by this knowledgeable professional’s words, but my instincts told me it was more than ‘just a phase’.

So, life went on, but Gregory was not ‘just fine’.  We continued to struggle with our quirky boy, trying to mold his good behaviors and discipline his bad ones.  I attempted play dates, in the vain hopes of helping him develop friendships.  I signed him up for activities, hoping that Greg would ‘find himself’.  I took him to a pediatric neurologist and was told, “No, he doesn’t have autism – He makes good eye contact.  He has Tourette’s Syndrome.”  We even had him wear orthotic boots to bed at night for two years, on the recommendation of an orthopedic physician, to cure the presumed tight tendons that were causing him to toe-walk years past the toddler stage. While all well-intentioned, none of it worked.  Gregory continued to be an unhappy, tense, withdrawn boy.

Once Greg hit Kindergarten, all hell broke loose.  Our older son, Daniel, had transitioned well into elementary school.  And the PreK teachers had said that Gregory was ready for Kindergarten, so we were totally blind-sided when things went so wrong right from the start.  On the second day of Kindergarten, I received a phone call from the teacher that Greg had been sent to the principal….WHAT????  I had NEVER been sent to the principal in my entire life!  My little guy didn’t even know that being sent to the principal was a bad thing!  What was going on???  Unfortunately, it went downhill from there…

In hindsight, it was not just Gregory’s behaviors that were at fault.  The teacher didn’t handle things as well as she might have either, and being the professional, I believe the greater responsibility lay with her.  In any case, the two of them did not mesh well at all, and it became a very rocky relationship, to the point where Greg didn’t want to go to school anymore.  His verbal and motor tics increased dramatically in response to the stress.  He felt his teacher’s disapproval, our disappointment, and his own frustration at being unable to do things ‘right’.  It was a daily struggle, with weekly meetings, and ‘talks’ with Gregory.  Luckily for him, his teacher went out on maternity leave in January and he and the new teacher got along much better.  I don’t know what specifically changed, but the new, young teacher must have just ‘got’ Greg and accepted him in all his quirky behaviors.  He still had melt-downs at school from time to time, but overall, he did much better and we were relieved that he might be moving out of that ‘stage’.

First and Second grades progressed slightly better, primarily because the teachers were wonderfully accepting of Gregory’s odd behaviors and needs.  The first half of each school year was fraught with melt-downs and running-away episodes, but by January, Greg would settle in and be more comfortable for the rest of the school year.  And we would think, yeah! He might be moving out of that ‘stage’…  until the next school year began and the cycle repeated itself.

In Third Grade, the year started off with the usual poor transition, with melt-down episodes of hiding under desks, running away from school, tearing up school work, and disappearing into stairwells.  Gregory was a desperately unhappy child, saying that “No one understands me.” And “I’m not like other kids.”  His tics were rampant, he was barely sleeping at night and he was always by himself.  I knew that something had to be done, but still didn’t know in which direction to turn.  This time, I made an appointment with the Head of Pediatric Development at St. Joseph’s Children’s Hospital…I couldn’t get the appointment for another 6 months, but I needed to do something and didn’t know where else to go.

And then, the ‘Date Night Epiphany’ happened.  For a number of years, my husband and I would schedule Date Nights every few weeks, for just the two of us to go out together and talk.  (This has served us well throughout the years – I highly recommend it!)  In any case, that particular night, Barry had to take a lengthy phone call from his boss in the middle of our Date Night, just as we were finishing dinner.  Knowing how much I love book stores, he knew that I could happily browse for hours and therefore not get annoyed by the interrupted Date Night, freeing him to take the call without guilt. 

So, to Barnes and Noble we went, where I was drawn to the section on Mental Health, still trying to put my finger on Gregory’s strange set of issues.  Bi-Polar – no; ADHD – no; Oppositional-Defiant Disorder – no.    And then the epiphany:  I picked up the next book on the shelf – Tony Attwood’s The Complete Guide to Asperger’s Syndrome[1].  Although I had a vague notion of what autism was, I had only heard the term Asperger’s Syndrome a few times and had no clue what it was.  So I turned to the page listing AS symptoms – and there he was, in all his quirky glory!!!!  I couldn’t believe my eyes…out of the 20 symptoms listed, Gregory matched up with almost all of them.  I was overjoyed – not that he had AS, but that now I had a direction to go….understanding and hopefully treatment was finally on its way!    I grabbed every book I could find on the subject and virtually ran to find Barry (having just completed his phone call, luckily) to present him with the joyous news!  Our son has Aspergers!!!

All that Friday night and the rest of the weekend, I read…and read….and read.  Light bulbs were going off in my head constantly as Gregory’s behaviors started to fall into place and make sense.   I hugged him and told him how much I loved him – for the first time with an understanding of all that he had been struggling with.  My brave boy had tackled so much on his own, trying his best to cope in his own way, to circumstances and situations that were so difficult for him…Sometimes sadly, even when the well-meaning actions of his parents and teachers exacerbated the problems for him.

But now, things would be different.  I knew what we were dealing with and I was ready to educate myself about my ‘opponent’.   I still went ahead and eventually visited with a Pediatric Neurologist for an official, unbiased medical diagnosis, but I was already convinced that this was it.  Time to strap on the armor….  Look out world – I’m a Mama with a Mission!


[1] Tony Attwood, The Complete Guide to Asperger’s Syndrome (Jessica Kingsley Publishers, 2007).

A is for Aspergers, B is for Blog

8 Aug

Welcome to Aspergers:  A Mom’s Eye View!

So, what is this blog and why am I writing it?  Simply because, this is my life – struggles and triumphs – and if someone else might benefit from my experiences, good and bad, then I’m happy to share. That is my wish.

I am the mother of three great kids, aged 7-12, who are mostly the joys of my life and sometimes the bane of my existence!  My now 10-year-old son, Gregory, was finally diagnosed with Asperger’s Syndrome when he was 8.  He is bright, talented and funny, but he has significant challenges as well.  This blog deals with how this neurological disorder has impacted him, me, and our entire family.  It will discuss our trials and errors, and even mis-directions as we’ve attempted over the years to figure out and then ‘treat’ his problems.

I have no particular background in this field (with degrees in finance and marketing, of all things!), but over the past two years I have become an ‘accidental expert’ out of necessity.  I am ’that mother’  who is reading, taking classes, attending seminars and learning as much as possible about autism, in all its forms and symptoms, and various therapies.  My primary goal has been to help my son overcome (and/or cope with) his challenges and reach his full potential for a happy, enriching life.

However, my wonderful husband – that funny, insightful, geeky guy, who supports all my crazy obsessions with merely a raised eyebrow – convinced me of a secondary goal.  He is the impetus behind this blog.  Barry is ‘all things techy’ and has been dragging me (kicking and screaming) into current technologies and social networking trends ever since we met 15 years ago.  He has twisted my arm once again, insisting that all the knowledge that I’ve been collecting might be worthwhile sharing with others in our situation, and that a blog would be a great way to get the word out.  And so, Aspergers:  A Mom’s Eye View is born!

Although normally very reticent about myself, I’m a firm believer in the old adage that ‘knowledge is power’, so the more we can share with and support one another, the better for us all!  With that in mind, I welcome any comments, suggestions and anecdotes from all of you….bring ‘em on!  And in the meantime, happy reading!

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