Tag Archives: Disorders

Going Public

7 Sep

Have you ever seen the guy who proposes to his girl in front of thousands via the Jumbo-tron at the sports stadium?  Or the family who willing allows cameras into their home to film the good, the bad and the ugly of their daily lives for a reality tv show?  These types of things hold a morbid fascination for me….why, on earth, would anyone want to DO that????  Why do people willingly expose their private, personal moments to the world?  I just don’t get it….

As I first contemplated starting this blog (at the instigation of my husband Barry – see first post), I struggled with sharing very personal information about my family with the world at large.  I just couldn’t make our lives a reality show for the internet!   I knew that Barry was fine with sharing details, because he already had his own blog going.  And while I am never exactly keen on giving out my personal experiences, I decided I was willing to share in the hope of helping another family.  But still, I didn’t quite feel comfortable with ‘exposing’ Gregory in the same way…it is his life, after all.

Unsure about whether or not to proceed, I drafted the first post to see if I could even pull something like this blog off.  I used initials instead of our names to camouflage our identities and didn’t mention anything that might be used to specifically identify us…, but the story failed to ‘move’ – we came across as too anonymous.  Not pleased with the progress of the draft, I abandoned it on my computer screen and left to take care of some beckoning chore or child.  When I returned to my desk, I was surprised to find Gregory sitting in my chair, avidly scanning the draft of the first post [A is for Aspergers, B is for Blog].  “What IS this?” he asked, bemused.  My heart sank as I struggled with how best to handle this tricky situation.

Then I remembered my mantra that “knowledge is power’, and decided to be upfront about what I was considering doing.  Following on in the mode we’d previously established, I once again shared information with Gregory and allowed him to have a say when things impacted him.  I told him about blogs, comparing them to one of his favorite tv shows.  “This is like what Carly does on her web show iCarly, but in written form.”  (He totally got that…)  Then I told him about my blog specifically.  I said it was about him, and our experiences with AS, and that we were hoping to help other families in a similar situation.  Hesitantly, I asked, “What do you think of the idea?”

To my surprise, he smiled broadly and said, “Great!”  Then I asked him if I should use his real name, use initials or make up another pseudonym.   Gregory instantly stated that I should use his real name, “of course!”  He is not ashamed of his condition and is in fact, proud of how far he has come…so why not use our real names?

Gregory Speaking at “Shining the Light on Autism” Conference

I guess I shouldn’t have been surprised. Unlike me, Greg has no qualms about ‘stardom’.   He loves the limelight and is a true ham at heart.  For example, last spring the program director of his Asperger’s Social Skills Therapy group approached us to see if he would be willing to be one of the panelists at an upcoming autism awareness conference.  Greg was over-the-moon, “Yes!  I would LOVE to!”  And he did a fantastic job, speaking in front of a large audience, answering questions and even ad libbing a joke!  Greg was the youngest panelist presenting that night, but you would never know it….he handled it like a pro!  He was open about his issues, forthcoming with his opinions and enjoyed sharing his experiences.

And last year during a school assembly focused on tolerant acceptance of differences, the presenter was talking about the upcoming “Buddy Walk” in support of Down Syndrome.  At Q&A time, Gregory waited his turn, then proudly got up in front of the entire school and announced, “I have a syndrome too.  It’s called Asperger’s Syndrome.”  And then he smiled with satisfaction as the kids in the audience applauded with warmth and the adults looked at one another with tears in their eyes.

Anyway, the rest is history, as they say.  With Greg’s enthusiastic ‘go ahead’, I put aside my misgivings and started the blog, using our real names, and laid it out there for all the world to see.  Each week I invite Greg to read my post before it goes out.  He has a phenomenal memory and can remember many of the quoted conversations verbatim, so he is a great resource.   I am happy to solicit Greg’s input, but most importantly, I want to make sure he feels comfortable with what I am writing.  In truth, this blog has become a joint effort by the two of us….it is ‘our story.’

Some of the things I’ve written have been news to him too; opening his eyes to a few behind-the-scene aspects of our story.  For example, after reading my second post [Date Night Diagnosis], Gregory exclaimed with wonder, “Wow….I had a really bad case of AS when I was little, didn’t I?”   I concurred and then highlighted how much he has accomplished since then…He beamed with pride (and so did I!)

But I still worry about exposing him too much.  After all, this blog goes out on Facebook, Twitter, forums and email, etc.  (Jumbo-Tron anyone???)  At some point, some of his peers will read all about his most personal ups and downs.  Will he be OK with that?  Does he really understand the magnitude and implications of what he is agreeing to?

So a few weeks ago, I shared with him my blog statistics as they stood at that point.  I showed him a graph which displayed how many people viewed my pages each day and then I pointed out the total number of views, wondering how he would feel.  “You mean, 380 moms have read these stories” he asked in amazement?  I nodded.   “And they told their kids about me” he questioned?   I responded that, “Yes, I’m sure some of them have.”  He smiled and nodded, “We’re helping a lot of kids!”

Once again, Gregory’s openness and acceptance just floored me.  In his mind, sharing his story means spreading understanding… ever expanding his support circle of acceptance.  That has certainly been the case to date, so maybe Gregory does know best!

I’ve read a great book, School Success for Kids with Asperger’s Syndrome by Stephan M. Silverman and Rich Weinfeld.  It promotes educating other students about AS and about the child’s unique strengths and challenges.

By educating classmates and schoolmates about the challenges of the individual child, a climate of understanding and support can be cultivated…  At older ages, the student with Asperger’s may self-advocate, as she helps educate her classmates about her own strengths, challenges, and needs.

With that in mind, we’ll continue with the blog – working together on ‘our story’.  Future posts will feature Gregory, highlighting his strengths and special talents.  There might even be a post by ‘The Man’ himself and I hope you all come to see what a wonderful, open, extra-ordinary human being he is…  Oh…and BTW – does anyone have the number for that reality tv show producer???  😀

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

 

 

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