To Tell the Truth

17 Aug

 “Greg, the doctor has discovered that your brain does not work the same as most people’s…”  That is how the discussion with my 8-year-old started…

There is much debate about the age at which your child is ready to learn of his diagnosis.  After all, you want your child to have good self-esteem and a carefree childhood; why worry him already?  Since every situation is unique, there is no ‘correct’ answer to this valid concern.  But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…

If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability.  You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.

For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically.  I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay.  I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?

But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’.  He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics].  And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation,  “You know Mom, I’m not like other kids.”  Pressed for more, he responded, “We just don’t think the same.”  But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me!   I just can’t….can’t….can’t help it!”

In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd.  But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.

So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news.  I first shared the diagnosis, along with some educational material, with our family and a few close friends.  I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory.  I also knew that Barry and I could definitely use the emotional support of our relatives and friends!

After thinking long and hard about it, I also shared the news with Gregory.  Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information  comforting, rather than disturbing.  I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS.  So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:

“Gregory, you know how we’ve been taking you to lots of different doctors lately?  Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.”  Greg looked shocked, but since I was calmly smiling, he was open to hearing more.  “That is good news and bad news,” I said.  “The good news is that one part of your brain is really, really smart.  The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.”  Gregory nodded his head, acknowledging these troubles.  “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.”  Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile!  Phew!!!  I then presented him with a cute little book for kids, entitledCan I tell you about Asperger Syndrome? so he could learn more about the disorder.

To be perfectly clear here, most people do NOT have this discussion with their young kids.  I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability.  But I am convinced that it was the right thing to do for us.  Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through.  It validated his feelings and provided him exclusive membership in a special group of people.  And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor.  Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors.  We no longer heard the distraught, “I can’t….can’t….can’t help it!” 

Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress.  We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together.  And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited.  Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.

Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially.  That acceptance, along with numerous programs, has enabled Gregory to grow into himself.  He is now relaxed and happy – most of the time!   He is a beautiful, bright, talented, funny 10-year-old boy.  And oh yeah, he also happens to have Aspergers Syndrome.


About these ads

23 Responses to “To Tell the Truth”

  1. Tricia August 17, 2010 at 9:26 am #

    Joanne….I love this post and your approach with Gregory – with all of your children, actually. You inspired me, through all of our coffee-talks, to be much more direct with my son about his ADHD…I was always so concerned he would not understand it anyway but of course he did and also has that relief of knowing there is a reason for some of his struggles.

    xo,
    Trish

    • Joanne Houldsworth August 17, 2010 at 2:05 pm #

      Trish – It’s all about supporting one another…. Coffee tomorrow??? :-D

      • Tricia August 17, 2010 at 3:47 pm #

        can’t wait!! :)

  2. Marisa August 17, 2010 at 10:50 am #

    It’s so important to be up front and honest with our children. They are much smarter than we think and should be included (in an age appropriate manner, of course :)) so they don’t come to the wrong conclusions. This support from family and friends can only help to boost his self-esteem.

    You are a very inspiring mom!

  3. Robyn August 17, 2010 at 11:38 am #

    Like you, Joanne, we have always been upfront and told all our children of any “diagnoses” that they have. I was quite shocked to find out this is not the norm. As parents and as a family we have only seen the benefits of sharing- it has helped each child individually in so many ways and it has helped our family learn to work together and help eachother out.

    I love reading your blog. Although all our families are different and unique, as I’m reading I always feel not so alone with things. Thank you.

    • Joanne Houldsworth August 17, 2010 at 2:08 pm #

      Thanks Robyn! Yes, every situation is unique, but so many of the approaches and resources overlap. The more we share with one another – the better for all our children!

  4. Barry Houldsworth August 17, 2010 at 2:25 pm #

    I am constantly amazed at how much children understand, and I think that too often we underestimate what they can handle.

    Not only is Gregory learning about how to handle his particular challenges, but he is bringing us along with him.

  5. Tracy August 18, 2010 at 11:46 am #

    Joanne,

    I love reading your blogs, you truly are a very inspiring and patient parent. I can see through all three of your children, that they feel the same. How lucky you all are…

    My very good friend, Stacy, works specifically with autistic chilren through the Ridgewood School system. I’m forwarding your blog along to her, as she’d like to share your words with the families that she works with – as everyone else mentioned above, it’s always nice to see that we’re not alone in the struggles that confront us.

    – Tracy

    • Joanne Houldsworth August 21, 2010 at 8:47 pm #

      Thank you Tracy. I appreciate your kind words, or for passing on the information. Awareness is vital!
      Joanne

  6. mumtoj August 21, 2010 at 6:51 pm #

    Thanks for sharing that with us, my son has also been diagnosed with Asperger’s Syndrome or High Functioning Autism, (depending on which “specialist” we talk to). At the moment he has noticed that he is different to other kids but he’s only 4 so I don’t think he’s ready to understand yet but I hope when the time comes to discuss Aspergers with him, I can do it in the same successful way that you did. Thanks again x :)

    • Joanne Houldsworth August 21, 2010 at 8:34 pm #

      Thanks for the feedback, MumtoJ. And best of luck to you and your son….there are so many resources available these days – the key is knowledge!
      Regards,
      Joanne

  7. ankhoneirosinfinitus August 31, 2010 at 5:39 pm #

    I didn’t know about aspergers until somewhat recently, but the more I learn about it and the more it seems to fit with the way I think, the gladder I am to probably have it. Young kids want to be like everybody else, but they don’t realize how awesome it is to be different because they think that the way the majority thinks is the “right” way to think. The opposite is usually true though, and aspies can see things with a clarity that is unfortunately lost on neurotypicals. They don’t understand it, and they don’t want to because they’d rather judge and let their emotions cloud their thinking.

    • Joanne Houldsworth August 31, 2010 at 9:11 pm #

      I agree with you ankhoneirosinfinitus….being different is definitely NOT wrong and can be a true advantage. I think it takes maturity to fully appreciate one’s differences though. In the meantime, we’ll just keep trying to celebrate them!
      Thanks for you comment. Joanne

      • ankhoneirosinfinitus August 31, 2010 at 9:44 pm #

        No problem, Joanne. You can refer to me as Ankh. It’s a lot shorter. I’m very fortunate that I don’t have the tics or the social anxiety that other aspies have. My problems come in the form of a generally rebellious attitude. When somebody tells me that I HAVE to do something, going through with it feels wrong, especially when I have moral and/or ethical issues with what I’m being told to do. I’ve made myself feel physically sick trying to do what I was told. I agonized for years over what was wrong with me and why I was different from everybody else, and only recently did it occur to me that there truly is nothing wrong with me BECAUSE I’m different from everybody else. I can’t tell you how liberating that realization was because it wasn’t a rationalization or wishful thinking. Pondering the situation rationally and logically, putting aside what I want and how I feel, I came to the correct conclusion that I am exactly the person I should be. It’s definitely a wisdom that came with age though. There’s no way I could have done it in junior high or high school.

  8. Patty September 15, 2010 at 3:50 pm #

    Great book! I just gave a copy of it to my son’s after-school program counselor yesterday. (After-school programs – an unfortunate necessity at the moment but definitely a source of stress!) My son and I read that book together when he was in 2nd grade. He got so excited, ” I DO that! . . I do THAT, too!” His teacher read it to the class with his (and our)permission and the school counselor gave a presentation to the class while he was in the room that year. It went really well. Now in 4th grade, I think he would benefit from having another one but he has decided against it for the moment.

  9. dyskinesia September 30, 2010 at 8:00 pm #

    Tonight, during our parent-teacher conference at school, I decided that it was time to tell our 5th grade son about his Asperger’s. Then I came home, found you on Freshly Pressed, thought “Wow, I hope she has a post about telling her son the diagnosis,” looked to the sidebar, and there it was.

    Thank you for being at the right place at the right time. I’m looking forward to following your family’s story.

    • Joanne Houldsworth September 30, 2010 at 8:24 pm #

      Stephanie – That timing is amazing! I hope you find some helpful information here, or least some support! I’d love to hear any tips you have, as well. Good luck with your journey, Joanne.

  10. Misty March 4, 2011 at 1:23 pm #

    I just stumbled upon your blog and I love it! I too have a son with Asperger’s. He is 9, but was diagnosed at 2. I am always surprised that other parents sometimes choose not to tell their child that they have Asperger’s. Jacob has always known. It’s as normal to him as him having brown eyes, or being a boy. I believe its important for him to know everything that we know about it as well. I have researched and read anything I could get my hands on since the day he was diagnosed. Now that Jacob is old enough, he reads about Asperger’s too and it helps him to understand himself. This blog is really needed! Thank you for letting others see what life with an Aspie is like!

    • Joanne Houldsworth March 4, 2011 at 5:53 pm #

      Thanks Misty! I agree that knowledge is power. How great that you were able to diagnose your son so early. The early intervention is so beneficial – I’m sure he is doing great today! Best wishes, Joanne

  11. Kenneth June 11, 2011 at 5:56 pm #

    Hello, my name is Kenneth, I am almost 16 years old and lives in Denmark. And oh yeah, I also happens to have Aspergers Syndrome. I want to tell you about what i think about your decision. But first some background of my own life as an AS.

    It all started when I was around 3 years, and in the kindergarden I was defined as insane, schizophrenic and some other things by the educators. When i was 4 years old I was told that I had AS. When I was 5 years old, I began in the 0 grade in Danish puplic school (it goes from 0 to 9) where I was bullied by the other kids. The only person in the school I really trusted was my best friend Christian. He made me some new friends, his sisterand his sisters friend. And even through that they were older than us, they still played with us. Some years later, when i was 9 years old (3rd grade), I moved from Copenhagen to a small town in the country side of Denmark. I only got one new friend at my new school. As the other kids from my old school, they bullied me. My friend was the only one who helped me out, when the other kids bullied me. When he had to move to another school, I got two new friends. In 7th grade they splited the 3 classes into 4 becuase some kids from an other school (Wich only went up to 6th grade) was going to move over at our school. Then one of my friends could not be in the same class as me, but we still were friends. In 8th grade we got a new Danish teacher wich changed my life. She was also teacher in a class made to kids with special needs (7th grade and up to 9th grade). In the second semester of 8th grade I got moved into that class half the time. After that, many of the other kids realized (even through that always they knew that I had AS) that i was different, and began accepting. Now I am in 9th grade, and still is half of my time in the special class. The special really helped me, my grades went from 02 (E) to 4 (D) and 7 (C). And I am now doing my exams and there is only 2 until i am done (They are both in the upcoming week). The school have agreet to let me retake the 9th grade in the special class.

    And today I have got low self-esteem, and I am believing that it is becuase they told me it in a that young age. If they had told me it when I was 8 years old, I maybe would have reacted the same way as Gregory did, and believe more in myself. I do not blame my parent for telling me it when I was 4 years old, they only wanted me not to be shocked if they told me when i was older. I believe that you chose the right decision about telling him, when he knew that he was different.

    • Joanne Houldsworth June 11, 2011 at 10:20 pm #

      Thanks for your comment Kenneth – and especially for your insights… It sounds like things things are going in the right direction for you now. Good luck with your journey!
      Joanne

  12. Stephanie July 1, 2013 at 2:51 pm #

    Found you as we prepare to tell our 8-year-old son (diagnosed just before 7th birthday) his diagnosis. We have talked since we started looking for answers about how everyone’s brain works a little differently and each person’s struggles and talents are different. His NT sister is great at reading and math but has to work at it, while those things come so easily to him it’s not work. On the other hand, it’s fairly easy for her to follow rules and not get mad at her friends, while that’s really hard for him. But we feel he’s ready for a name and I’ve been looking for a companion book. Thank you so much for this!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 171 other followers

%d bloggers like this: