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???  😀

10 Responses to “Going Public”

  1. KWombles September 7, 2010 at 12:12 pm #

    It’s a tricky course to navigate. Any posts about the kids they know about before hand and agree to. They, too, like the idea of sharing their story and helping others. They love reading blog posts about kids with autism because it gives them a sense of community.

    • Joanne Houldsworth September 7, 2010 at 12:35 pm #

      Yes…very tricky. For Greg’s personality, being ‘out there’ is good, but I suspect my daughter, for example, would have the opposite reaction. It is like a tight-rope walk that is different for each child and situation.
      Thanks for your comment, Kim!

  2. Laura September 7, 2010 at 2:43 pm #

    Same here. I talked about it with both kids first, and they’re welcome to read any post. So far, there hasn’t been an issue. But at the same time, I don’t tell every single detail either. My kids are entitled to some measure of privacy. Some things are just not other people’s business.

    But that’s just me.

  3. Ann September 7, 2010 at 5:10 pm #

    You and Gregory are very brave for going public. Kudos to you both. I’m an aunt to nephews, who have Asbergers. I’ll be following your blogventures.

  4. PC September 7, 2010 at 11:04 pm #

    The memory catches me out a lot of the time. My five year old will start telling me of the hotel we visited a year and a half ago in minute detail right down to the number of the room. I cannot make a promise and not keep it. If I try and put something off and say we can postpone to later that day/month/year, it better happen or I will be held accountable.

    One guilt I am still struggle with, is that at times I wish I had lived in ignorance a while longer. We started down the rabbit hole when our first was 15 months. That started the acronym roundabout and changed life as we knew it.

  5. ankhoneirosinfinitus September 13, 2010 at 2:32 pm #

    At least you’re going public with something that can’t be reasonably expected to incite hatred or violence toward you. If anyone did take exception to you talking about how to take care of kids with asperger’s syndrome, you would have the support and protection of lots and lots of people who sees that you are clearly in the right.

    I speak out against religion and government, the top two most inflammatory subjects there are. Of course I use an alias. Looking up my real name doesn’t yield anything of me, just people who share my name. Whenever you share your opinion on any subject, you run the risk of some psycho deciding it’s a good reason to kill you. You just have to decide for yourself whether or not it’s worth it.

  6. Paris March 9, 2011 at 12:11 am #

    I’m a mom with a recently diagnosed PDD son (probably AS, but the doctor wants to spend more time with him to make sure it’s that rather than HFA or PDD-NOS). Reading about the two of you gives me hope. My son doesn’t have the same problems as Gregory, but I definitely understand the blow-ups at school and various other misadventures. Being able to read about real people who are going through a similar thing is very helpful. Thank you and thanks to Gregory, too.

    • Joanne Houldsworth March 9, 2011 at 11:02 am #

      I’m glad you found the posts helpful Paris – I feel like we all benefit from sharing! Good luck with your journey! Joanne

  7. Kim March 11, 2011 at 8:05 pm #

    I instantly have love for you and your family from reading your blog. I am the very proud Mom of a daughter and son, my son will be “formally diagnosed” (with any luck) in a few days, so this is relatively new to all of us. Navigating the system of things has not been easy nor fun. It is so heart warming and inspiring to read about Gregory. Thank you all so much for being so open and willing to share your lives, you are making a difference and helping more families than just those that read your blog. Your positive energy and openness will no doubt reach far beyond each single reader, and into the lives of their family members, friends and relatives, coworkers and others going through the same struggles. Your family has the potential to influence millions!

    • Joanne Houldsworth March 12, 2011 at 10:51 am #

      Thanks very much for your wonderful comment Kim! Finding the ‘correct’ diagnosis and learning about AS and all the various therapies can be overwhelming, but there is hope at the end of the tunnel! There are many great resources out there nowadays, and a very supportive AS community, so I am sure your son will do great. My great hope (and the purpose of the blog) is that our experiences can be a beneficial part of that greater support community and help smooth the path for others. Good luck on your journey! Joanne

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