You’ve Come A Long Way, Baby!

What a difference 10 years can make.  A world of difference in some cases…

I regret that I haven’t posted in a long time, but hopefully this post will more than make up for my long silence.  May it bring you hope that there is light at the end of the tunnel…

It is not until I look back to those fraught days 10 years ago, that I realize just how far we’ve come.  I wanted to take the opportunity to share with everyone the remarkable story of Greg’s growth, success and independence, to give hope to those families still in the midst of autism struggles.  I would never have dared dream that today Greg would be such a self-possessed, independent and capable a young man.  It truly brings tears to this proud mama’s eyes…

In the video below, I interview Greg again – 10 years after our first interview (The Boy Behind the Blog). You can see for yourself how much Greg has grown and developed and ‘what a difference 10 years can make…” (Read below for details about how this growth came about.)

Greg’s Story

Life has had its ups and downs in recent years, but mostly hummed along.  Each year, Greg continued to struggle valiantly, gaining skills, self-control, and academic success in small incremental steps.

Greg graduated high school with honors in 2018, and while never a ‘success’ in the social or sports realms, he won numerous academic accolades, held a part-time job throughout high school and was well-liked and respected by the teachers and other adults in his life.

But a pivotal time came when Greg had an ‘a ha’ moment during his junior year in high school as he all-at-once developed social self-awareness.  He was able to look at himself with new eyes – as his peers might see him.  Suddenly, my years of guidance (to try to manage his tics and quirky behaviors to his ‘safe zone’ at home) gained meaning to him.  He became motivated to become more socially savvy and was able to adjust his behaviors and social interactions accordingly.  But, sadly Greg eventually concluded that it was too late in his high school career to change how his peers saw him – in their minds, he would always be that nice, but weird kid.  Knowing that he was headed off to college shortly, Greg reframed his goals and decided that he would ‘remake’ himself at college, to start off fresh as the person he aspired to be:  confident, out-going, successful and more neuro-typical.

And once Greg makes up his mind, he is dedicated to his task.  (This is when a rule-based Aspie mentality is a huge advantage!)  He read a great book, The Naked Roommate by Harlan Cohen (I highly recommend it for anyone heading off to college!), to prepare himself for various new situations of college life.   He self-analyzed and figured out what about himself and his actions he wanted to change.  He made up his mind to say ‘yes’ to new things as much as possible. As his mom, I was actually concerned that he would be putting too much pressure on himself – trying to change so much about himself, his living situation, his independence and his academics all at the same time.  I even suggested that perhaps he consider tackling a few changes at a time, instead of a ‘big bang’ approach.  But no, Greg was determined to become the new 2.0 version of himself.

To my amazement and great joy, Greg truly rose to the occasion.  He adapted to college life very well, including living with a roommate for the first time in his life.  He made friends, joined clubs and socialized.  He became very independent, with only our Sunday night video chats (mostly for MY benefit, not his!) to check in.  He found being outside his comfort zone to be exhausting initially, but he continued to force himself to say ‘yes’ to new opportunities as much as possible, and eventually began to enjoy the social side of life.  There were some bumps along the road, but his confidence continued to build and by the end of the first semester, Greg took on leadership and volunteering roles, all while maintaining his Dean’s List status and a part-time on-campus job throughout his freshman year.  (If I sound like I’m bragging – I AM!   I am super proud of his hard work and accomplishments!)

Buen Viaje Greg!

Next, fast forward to his sophomore year…in July of 2019 we sent Greg off on HIS OWN (yes, you read that right!) for a semester abroad in Chile, South America – not knowing a single other person – to live with a non-English speaking host family!  Greg was nervous to be so independent, but very insistent that he wanted to experience life abroad and become more proficient in Spanish.  With great trepidation, we said goodbye at JFK Airport and sent him on his way to the other side of the globe for the next five months…

I’ll let Greg tell you about his fabulous experiences in Chile himself in the video, but suffice it to say that it was an experience of a lifetime.  His personal growth was remarkable – plus he is practically fluent in Spanish now!

Greg still has two more years of college before he formally strikes out on his own, but he already has a fantastic internship with one of the Big Four accounting firms lined up for summer 2021.  I am sure there will be some rocky times ahead, but I am confident that Greg has the ability, skills, resilience and strength to navigate those potholes successfully – to build a life full of joy and fulfillment.   There is light at the end of the tunnel…

Embrace the Chaos

Recently my daughter spent a few days with a friend, visiting her grandmother.  Aside from hoping that the girls were behaving themselves and having a great time, what came to mind was the realization of how calm and quiet our house was without her….The two boys were still at home, so there was still action going on, but everything was relatively peaceful and laid back.  The boys played together well and were happy to engage in family activities, like bowling or movies without any disagreement.  Experience has taught me that you could have removed any one of the three children, and the result would have been the same – calm, peaceful, playful familial ‘bliss’.  There is just something about that mystical number three that brings out the crazies in kids.

Any parent with a young child in the house will tell you that, at times, chaos reigns supreme.  Multiply the number of children by three (or more!) and chaos is a daily occurrence.  Complicate that equation with two boys being on ‘The Spectrum’ and life starts to get very interesting… supreme chaos is practically the status quo.  Welcome to Chez Moi!

Before having kids of my own, I would shake my head in quiet disapproval as I observed mothers ‘giving in’ to their child’s public tantrums, or screaming at their child to ‘just behave’.   I would pull my nose up at dirty, snot-nosed kids, running willy-nilly in mismatched outfits, as their mothers looked away in quiet desperation.  Don’t these women have any pride, I would think to myself?  Can’t they manage their children? Not I….oh never!  I, of course, planned to have beautifully dressed, well-mannered, cooperative, bright, adorable little cherubs….someday….

Fast-forward some years, and I awoke to find myself over-run by three screaming, whining, fighting, hellions who are constantly demanding something – food, attention, toys, vindication, you name it….and leaving a trail of destruction in their wakes.  What had happened to my grand plan of perfect little angels?  I learned the hard way – never say never!

Don’t get me wrong, I adore our three kids and given the option, wouldn’t send any of them back (well, not today anyway…)  But, they do tend to play havoc with my carefully laid plans, try my patience with their ‘deafness’ and test my parenting skills with their challenges.

Truth be told, I’m not your laid-back type of person to begin with (my husband is nodding his head vigorously in agreement!), so dealing with this level of noise, chaos and disruption is like fingernails down a blackboard.  I struggle hard to pick my battles and as the popular book recommends – not sweat the small stuff….easier said than done!

Finally accepting that chaos is a natural part of our family life, I’ve recently adopted a new motto – “Embrace the Chaos”.  Rather than constantly fighting to tame the chaos, I now try to find the joy within it:

• Instead of sighing over the trail of art supplies left behind by my daughter, I try to envision her future as a budding Picasso.
• Instead of groaning over the books and papers strewn across my son’s room, I try to focus on the fact that he is an avid reader.
• Instead of moaning over that fact that my kids complain about the dinner I just slaved over, I try to appreciate that we are all together and have food to eat.

And of course, in the midst of it all, I also try to seize the rare moment of ‘zen’ for a quiet moment for myself, reading in the sun room.

For Gregory in particular, chaos can be extremely difficult to deal with.  As with most Aspies, sensory overload from the sights, sounds and smells of our daily family life – music, video games, shouting, vacuuming, etc. – can become very stressful. Add to that, an older brother who loves to tackle, touch and tease and a whiny, persistent little sister invading your private domain, and poor Gregory has his hands full trying to hold himself together.

But as stressful as family life can be for Gregory, I am convinced that our familial chaos has  benefited him as well.  It has forced Greg to build his threshold of sensory stimulation and increase his tolerance for frustration.  Family life has helped Gregory to adapt, as he is forced out of his comfort zone of quiet control into the fray of close social interactions and constantly changing situations.  Family disruption has taught Greg sharing and negotiation tactics, as well as the skills of reading social cues necessary to achieve a desired end.  In short, although he frequently retreats to the quiet solitude of his bedroom to decompress from too much ‘togetherness’, the ‘invasions’ of family life have also forced Greg to rise above of his Aspie tendencies and interact with life as it comes…maybe not on his terms, but on terms he can now cope with much better…

So, when chaos reigns supreme in your home, just stand back, take a deep breath, relax and ‘embrace the chaos’! The positive results might just surprise you too!  (And I’m willing to bet that Picasso’s house wasn’t exactly immaculate either…)

Related Articles

• How Rude! (asdhelp.wordpress.com)
• Embracing the chaos – build a fort in the living room (if you can find the living room) (dadventure.ca)

What We Have Here … Is a Failure to Communicate

“Don’t be smart, Mister!” I scolded my then 8 year old Aspie son, after he back-talked me about something or other.  He looked at me, wide-eyed with confused uneasiness.  He knew from my tone of voice that I was angry with him, but he didn’t understand my words… (Don’t be smart?  Isn’t being smart a good thing?  What is wrong???)

As I watched his facial expression retreat from disrespect to confusion to worry, I realized that we were experiencing a breakdown in communication.  I stopped and considered my impulsive reprimand…  Ah ha!!!- Gregory was interpreting my words literally!  At face value, the idiomatic phrase “Don’t be smart” went contrary to my usual promptings, so naturally it didn’t make sense to him.

Like most Aspies, Gregory is naturally very literal and needs to be explicitly taught to recognize when an idiom or other figurative language is being used.  Once I explained that “Don’t be smart” is a figure of speech that means ‘Don’t be fresh’ (hmmm…ok, that’s another figure of speech….) or ‘Don’t be disrespectful’, then he understood.  My message got through  and he apologized for being rude.  My mission was accomplished with that particular communication ‘battle’, but I realized that we had yet to win the ‘war’…

The Hidden Curriculum – Part III – Figurative Language

As discussed in my blog series The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding hidden curriculum rules.  Figurative speech, and most especially idioms, fall into this category.

A life-long avid reader, I adore imaginative figurative language and admire writers who can incorporate it effectively into their writing to add color and interest.  Well written prose, with the help of ingenious figures of speech, can take a rather mundane concept and turn it into a memorable, thought-provoking ‘pearl of wisdom’.

As you may recall from your grade school English classes, figurative language contains images and comparisons.  The speaker describes something through the use of unusual comparisons, for effect, interest, and to make things clearer. Appealing to the imagination, figurative language provides new ways of looking at the world – adding richness and depth to our communication.

To refresh your memory, here are some common types of figurative language that we use on a daily basis:  (See how well you remember… I had to look a few of these up!)

• Imagery
• Simile
• Metaphor
• Personification
• Alliteration
• Onomatopoeia
• Hyperbole
• Cliché
• Idioms

As fun, creative and widely used as it is, figurative speech is not intended to be interpreted in a literal sense. And herein lays the problem….  It is common for young kids to take things too literally, but when this misunderstanding continues with age, it can create significant comprehension and therefore social issues.

Figures of Speech Game

To help Gregory develop his sense of figurative language, I created a “Figures of Speech” game that we played each night at dinner time.  I printed out hundreds of common idioms, such as “Quit horsing around”, “Roll with the punches”, and “Bite my head off”.  (An entire chapter is devoted to examples of Figurative Speech and Idioms in Brenda Myles’s wonderful book, The Hidden Curriculum, which formed the basis of my series on the subject.)  As we all sat around the table, one of the kids would read aloud a figure of speech from a little slip of paper and then everyone would try to guess what it meant.  Then I told them what it meant figuratively, including, whenever possible, how it originated.  We giggled about how silly it sounded when interpreted literally, so they could begin to recognize these types of phrases in daily life.

During the game, we would review sayings that we had already covered, to reinforce the learning process.  This time around, the kids usually guessed/expressed the figurative meaning correctly.  We also had lots of fun having everyone come up with other idioms, either from things they had heard or from their imagination.  We all enjoyed many laughs and the lessons got through, because nowadays, when Gregory hears an idiom on tv or reads one in a book, he’ll turn and inform me, “That’s a figure of speech!”

I am Tongue Tied

During a school book fair where I was volunteering, I came across a wonderfully silly kid’s book called  Even More Parts by Tedd Arnold (of Fly Guy fame.) Through the use of very cute cartoons, the author introduces all sorts of common idioms dealing with body parts – from head to toe!  Just imagine the literal illustrations of someone saying “I lost my head”, “I keep changing my mind” or “I am tongue tied” – hysterical!  I bought it immediately – what a fun way to ‘get’ figurative language!    I presented it to Gregory, who was instantly mesmerized by the cartoon pictures of a man who ‘sang his heart out’ (his red, beating heart falling onto the floor), and the boy who ‘went to pieces’ (his snap-together body parts strewn all along the sidewalk).  The book was a huge hit with all three of the kids, who giggled at the absurdity of the literal interpretations to these well known idioms, so I subsequently bought the complete set (Parts and More Parts!)  Kudos Mr. Arnold!

*  *  *  *  *  *  *

Today, as a result of our ‘Figures of Speech’ game, the Parts books and lots of general reading, Gregory has a well-developed sense of figurative language.  Even when he doesn’t understand exactly what an idiom means, he recognizes that the phase is not meant literally.  But even better yet, Gregory uses figures of speech himself – to add richness and creativity to his own speech and writing!

So, the next time your child becomes concerned for your safety because you are “just going to jump in the shower….”, you might want to consider a couple of these techniques too.  Comprehending idioms and figurative speech can pose real difficulties for those on the Spectrum who see the world through literal ‘glasses’, but with a little work and a lot of silliness, our kids don’t have to stay ‘out in left field’…

Related Articles

• The Hidden Curriculum (asdhelp.wordpress.com)
• How Rude! (asdhelp.wordpress.com)

Back-to-School Basics

OK, I’m a nerd….I’ll admit it.  I’m one of those kids who loved school, adored books and even enjoyed a challenging homework assignment!  (Can’t you just see that big “L” on my forehead???)  For me as a child, the end of summer brought a mix of feelings.  On one hand, I adored the long, lazy, unstructured days spent playing with my friends.  On the other hand, the siren song of the new school year enticed me…all those new supplies, new school clothes, new books, new teacher and treasures of knowledge – vast potential awaiting me.   Even today, although I won’t be heading off to school myself in September, I feel that nostalgic excitement building.  Instead, I live vicariously through my children – planning, dreaming, imagining all the promise ahead for them.

But for Gregory, now heading into 5^th grade, September brings with it, not excitement and anticipation, but dread and anxiety. Typically, Gregory has had a very difficult time adjusting to each new school year.  The new teacher, new room, new schedule, new class work – all requiring simultaneous adaptation – has often proven too much for him to cope with.  He would have melt-downs during school, followed by full-blown tantrums at home.  At school, it would be shredded projects, head-banging and crying jags.  At home we experienced slamming doors, projectile toys and even running away.  Obviously Greg’s limited and over-taxed coping mechanisms were insufficient to meet the burdens being placed upon them.

Over the years, we’ve learned a few ‘tricks’ that have helped his school year transitions. And while Greg’s transition into 4^th grade was not without episodes, it was by far the smoothest to date.  I’m hoping that by applying some of the strategies that we’ve developed, this fall will be even better!

With that in mind, I wanted to share some of the tactics that we’ve employed previously with good results:

1.  Select the ‘right’ teacher.

The personality and teaching style of the teacher can have dramatic impact on the student.  While no one type of teacher is ‘right’ for every student, there most probably is a ‘right’ teacher for each child.

In Gregory’s case, the type of teacher that has been most positive is one who is nurturing, but has good control and structure within the class.  He/she is knowledgeable about Asperger’s Syndrome (and Greg’s need in particular), but maintains high expectations for success and achievement – both academically and socially.  And perhaps most importantly, Greg’s ideal teacher must maintain a calm, accepting, tolerant classroom, where the students support one another.

To help make sure your child gets the appropriate teacher assignment, start a dialogue with the guidance councilor, principal and current teacher the spring prior.  Discuss the types of teaching qualities to which your child responds best.  Include teacher assignment in the annual IEP meeting.  While our school administration will not necessarily make commitments or talk ‘specifics’ about teachers, the open discussion at least puts everyone on the same page about the needs of your child.  And face it, if your child transitions well and has fewer disruptive episodes, everyone benefits.

2.  Maintain skills over summer months.

Gregory is a perfectionist and finds it very stressful when he can’t do something or when he gets answers wrong.  To help combat this anxiety, I have Gregory (all three of my kids, actually) read nightly and do two workbook pages every weekday during the summer break.  They are free to read anything they would like, but I’ve utilized the Summer Bridge Activities workbook series by Michele D. Van Leeuwen for a several years now.  The material varies each day, but includes math, reading, writing, language and science over the course of the summer.  Since the work is based on the previous year’s curriculum, all the material is review, which makes the tasks fairly simple and the enables the child to feel successful.  And most importantly, this practice keeps the material fresh in the child’s mind, ready for the new school year.

3.  Meet teacher before school starts.

Last year for the first time, I arranged for Gregory and me to visit the school the week before school started.  It enabled us to meet his new teacher, see his new classroom (including which seat was his), see a list of other kids in his class, look through his new books, etc.  We included the guidance councilor in the meeting and took this opportunity to discuss some of Greg’s challenges and strategies.  The school was calm and quiet and Greg could stroll around at his leisure, taking it all in at his own pace.  He loved the experience and became more excited for the first day of school.  And when the first day arrived, Greg was already an ‘expert’ about his new class, entering with confidence instead of anxiety.

4.  Build positive excitement – but not too much!

Knowing how stressed Gregory can get about the new school year, I am careful to not talk about it too much ahead of time.  I might mention it in a round-about way, saying something like, “Look how much you’ve grown.  I can see you are ready for 5^th grade.” I’ll also mention in passing the particular kids who will be in his class and maybe even some of the things he’ll be learning and doing (for example, the 5^th graders put on a musical at the end of the year.)  I want Gregory to know that the new year is approaching (so as not to catch him off-guard) and that he has a lot to look forward to, but I don’t want to build it up too much.

5.  Maintain close communication with the teacher.

Since so much with Gregory is helping him manage his moods and emotions, during the first few critical weeks of school, I have almost daily communication with the teacher.  I will email the teacher to let her know if something at school that day was difficult or stressful for Gregory, so that she can head-off an issue the following day.  If he has a rough night or morning at home, I will also alert the teacher, so that she knows to handle him with kid gloves…at least until she senses his mood.

6.  Hold off on extra-curricular activities.

Knowing that Gregory’s senses and coping mechanisms are worked over-capacity at the start of the school year, I’ve learned not to have him start any other new activities after school for at least 6 weeks or so….and that includes play dates!  He needs the after school time to decompress from the stress of the day without any added pressures or performance expectations.  In fact, I usually encourage him to have some down-time (such as riding his bike, swinging or jumping on the trampoline) before even attempting homework.  In that mode, I also try to minimize any weekend activities or commitments during September to provide maximum down-time.

7.  Define safe havens at school and at home.

Even with the best laid plans and sensitive accommodations, Gregory will sometimes ‘lose it’.  His emotions will get too big for him to manage and he’ll have a melt-down.  We’ve arranged with the school, teacher and guidance councilor for a specific place to go when he feels the need to escape.  In our case, Greg’s ‘safe haven’ is the guidance councilor’s office, where hopefully she will also be available to aid him in calming down.  At home, Greg’s bedroom is his safe haven to escape from the intrusions of family life with two noisy siblings.  We’ve also equipped his room with a beanbag chair which provides added sensory input to help him calm down.

So, as September fast approaches, I can feel my excitement brewing.  I’m avidly anticipating back-to-school shopping for shoes, clothes and supplies.  I’m drooling over all the brochures that arrive in the mail daily, announcing great sales and a myriad of after-school activities.   As I drive past our local elementary school (at least 5 times every day!), I look over fondly, imaging my kids in their new classrooms, absorbing all those ‘treasures of knowledge’ that I so enjoyed.  And hopefully, with some planning and foresight, Gregory’s transition into 5^th grade will be smooth sailing, and someday he’ll be able to think back upon his back-to-school days with fond nostalgia too.

 

Do you have any strategies that have helped ease your child’s back-to-school transitions?  If so, I’d love to hear them!

 

To Tell the Truth

 “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, entitled “Can 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

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

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!