Catching ZZZs

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

 

On His Own?

When you look at your 10 year old child and dream of his future, do those dreams include having him live with you forever?  Mine sure didn’t…

Last fall, I attended a certificate program in Special Education and Autism at the local community college.  Gregory had been diagnosed with Aspergers Syndrome (AS) the year before and I was still actively trying to learn as much as I could about the disorder and treatments.  The course required that each of us interview an Autism Service Provider and prepare a presentation about their services. 

Gregory had been attending a therapeutic social skills group for boys his age at a nearby mental health center for about 6 months.  I knew that this center also serviced adults on the spectrum, so I opted to interview the director of the Adult Aspergers Services Group (who also happened to lead Greg’s AS group).  Happily, the director (Eve) was most willing to meet with me and discuss the services offered to adults on the spectrum.  So, I prepared my set of questions and set off for the interview, feeling upbeat and studious.

During our discussion, Eve informed me that this group (adults over 21, with AS, High-Functioning Autism or PDD-NOS) is very under-served, with some people having to travel over two hours to participate in a program because nothing closer is currently available.  Most of these individuals had not received any type of services as children and had been misdiagnosed, if diagnosed at all.  Due to their generally poor inter-personal skills, most of the group members are un[der]employed, still live with their elderly parents and have very few friends or spouses.  This clinic offers these individuals a variety of different programs, including counseling, college planning, workforce skills, personal/hygiene, life skills, social skills and recreation.

So think about this…  Most of the participants in Eve’s programs are college graduates and in many cases are highly intelligent.  But due to their quirky behaviors and inadequate social skills associated with Aspergers Syndrome, they are frequently unable to obtain and/or retain meaningful, gainful employment.  Since their employment is so limited, these individuals cannot afford to live independently.  In most cases, these highly intelligent, highly skilled individuals have no option but to live with parents in the bedrooms of their childhood.   OK, that’s not ideal you might think, but living with your parents isn’t all bad, right?

But what happens when their elderly parents become infirm or pass away?  These Aspies, unable to support themselves or function adequately within society, frequently fall under the auspices of the Division of Developmental Disabilities (DDD) and are put onto waiting lists to join a group home.  The DDD is set-up to provide a certain level of support (financial and otherwise) for adults who are developmentally unable to take care of themselves and live independently.

The problem comes with the rapidly growing backlog of people needing placement in group homes.  With 1 in 100 children currently being diagnosed with Autism (according to the Centers for Disease Control and Prevention), this is the fastest growing developmental disability in the US.  Without adequate treatment, these children will grow into adults who require a lifetime of continuing services from the DDD.  Although there is already a significant shortage of DDD group homes and other appropriate facilities, there is currently no plan in place to meet the needs of this rapidly expanding population.

As alarming as those facts sounded, they didn’t touch me directly until Eve casually said, “So, you should put Gregory onto the waiting list right now.  Then, by the time he needs it, there might be a facility available for him.”  I blanched and struggled to understand what she was telling me.  I must have misunderstood.  “Do you mean that you think Gregory will never be able to live independently?” I asked in shock…  That couldn’t really be what she meant – She worked with Gregory – She knew how bright and talented he was.   Eve didn’t answer directly.  She looked at me sadly and nodded.

And with that, my world shifted on its axis.  Confused and reeling from the news, I couldn’t think straight.  “No!!!” I wanted to shout, “That can’t be true!”  But I didn’t.  I am sure my face and body language conveyed my distress, but I tried to calmly gather my papers, thank her for her time and exit as quickly as possible.  Going down in the elevator, I shook my head in denial as tears welled up in my eyes.  I held myself together until I got to my car…and then the floodgates of despair opened.

Suddenly, I was seeing the future in a different light.  The possibilities were not bright, wide open and endless as I had once thought.  Gone were my hopes of Gregory making his own way in the world – finding success and fulfillment through his career of choice.  Gone were my hopes of holding a grandchild in my arms while Gregory and his wonderful future wife look on proudly.  Gone were my dreams of globe-trotting to exotic ports with my husband during our empty-nest years.  Instead the future looked dark and bleak and hopeless.

I cried and cried, trying to get my head around this future that I had never imagined.  Of course, I was willing to do whatever needed to be done to help and support my son, but would he really need all that?  Yes, Greg has his quirks and struggles with some things, but overall he is doing well in school, managing things at home and progressing well.  Surely, he would one day be able to live on his own…

But as I thought about why Eve made her recommendation, I came to see some of the unspoken factors that may have lead her to that conclusion.  As one example, Aspies are frequently lax in their personal habits, because they don’t value the benefits the way an Neurotypical (NT) brain does.  An Aspie doesn’t see well through the eyes of an NT (and vice versa!) and therefore may not fully appreciate that it is not pleasant for that NT to see or smell an unkempt person, much less work or socialize with one.

Yes, Greg is perfectly capable of bathing himself and putting on clean clothes, but if I weren’t there to guide him, would he see the need to do these things on his own?  Perhaps not – perhaps he would go unwashed and wear the same clothes for days.  Yes, at some point in the future Greg could probably shop for groceries and cook a meal, but would he value the need to eat a balance diet and make the effort that that requires?  Perhaps not – perhaps he would eat his favorite take-out pizza 7 nights a week.  Yes, Greg could make his bed, vacuum his room and do the dishes, but on his own, would he choose to do so???  And the list goes on…finances, home maintenance, health, fitness, socializing…  In society, we do necessary ‘chores’ on a daily basis – even if we don’t feel like it.  We do these tasks, because we NTs are aware of the societal benefits of them and the consequences of not doing them.  An Aspie may not value the benefits the same way, and may not even be aware of the consequences that society will impose for not doing so…not a recipe for success.

It dawned on me that, even if Greg could eventually obtain stable, gainful employment and earn enough for his own place, it may not be sufficient for his needs.  For although Gregory would most likely be capable of doing all the tasks required of living independently, without guidance he may not choose to do those tasks.  And that is where an on-going NT influence (whether it be me, a roommate, a wife, or the Resident Assistant at a group home) would be beneficial.  And a group home, filled with fellow Aspies, might be a very positive, nurturing experience.  It could be a very comfortable, supportive environment within which Gregory could thrive – understood and appreciated by those around him.

So eventually I came around to appreciating Eve’s recommendation for what it was….good advice.  We don’t know what the future holds for Greg.  And while I sincerely hope that he will eventually lead a fulfilling, happy life on his own, I can see that some on-going beneficent NT oversight will most likely be necessary.  His father and I will not be around forever, so it is prudent for us to plan for his future.  As much as my heart resists it, we should sign Greg up with the DDD, so that at least he has that fall-back option should he need or want it.   Sigh….

To be honest, having come to that decision months ago, I still haven’t taken any action.  That future seems so remote and Greg’s progress has been very impressive over the last two years…  Besides, AS is becoming almost cool these days, with documentaries and box office movies being made about it and Aspie characters starring on almost every hit tv series.  As the general public becomes more aware of AS and the unique strengths that many of these individuals possess, future employers may very well be seeking out Aspies with lucrative, adapted job opportunities, instead of shying away from them in fear, misunderstanding and/or censure.

In a wonderful book by Temple Grandin and Kate Duffy – Developing Talents:  Careers for Individuals with Asperger Syndrome and High-Functioning Autism, the authors suggest ways to identify and tap into the potential talents of those on the spectrum.  This sage, practical book discusses all aspects of the search for suitable vocations – providing invaluable career advice to and from real people with AS.  So taking all this to heart, I am not abandoning my hopes and dreams for Gregory’s future.  Sure, he might take a little bit longer to ‘launch’ and he may benefit from on-going supports, but that’s OK.  Working together, we will do our best to prepare him for an independent, successful life – one on his terms, of his choosing.  That is my dream.

*  *  *  *  *  *

In spite of society’s growing awareness and acceptance, it remains an urgent priority to address the needs of the expanding autistic population within our social services across the country.  Stop-gap measures must be put in place immediately to address the huge gap in current unfulfilled needs within these organizations.  But equally critically, a strategic plan must be developed to address the anticipated needs of the future.  Society cannot just put its collective ‘head in the sand’ and hope these problems will go away.  We owe it to ourselves;  We owe it to our children…

Let’s make it happen!    – Joanne

A+ for the Teacher

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 3^rd 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 entitled:  Simple 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