Silent No More

photo credit: neuro-atypical.com

photo credit: neuro-atypical.com

No, I’m not going to be quiet about it anymore.  The Boy has Aspergers.  He’s an Aspie.  He has been diagnosed with High-Functioning Autism now because they no longer have Aspergers Syndrome listed in the DSM V.  Hearing this last Friday was not “news,” but I think I have finally accepted that this is our life.

Two years ago, I got the diagnosis of “Aspergers Syndrome” from a psychologist who contracts for the Los Angeles County Regional Center.  A psychologist who had met with me and The Boy for all of 2.5 hours.  Her diagnosis made sense to me, but at the same time I wanted to dismiss it because I felt like she just conveniently made that assumption based on The Husband’s family history.

Everyone that we had talked to leading up to that diagnosis had told us that The Boy was a “perplexing” case.  I was told that he may “outgrow” his diagnosis by the time he started Kindergarten, so I kinda believed it and kinda hoped they were right.

And so I didn’t tell too many people about The Boy’s Aspergers Syndrome.  Only close friends and family. And you, dear Reader. I kept quiet because I thought that this diagnosis was The Boy’s, and it was not for me to share with anyone beyond his immediate family until he came to an age where he could determine who he wanted to tell what to and when.  I didn’t want him being labeled.  I didn’t want him being judged.

That decision kept me isolated from my friends, and from the parents of his typical friends.  Even more isolated that his diagnosis had made us.  I kept quiet about it because I figured if he did indeed outgrow his diagnosis, I didn’t want people to be confused.  I didn’t want to have to explain.  I just wanted to work quietly on this without everyone knowing, and I think subconsciously I was hoping that the diagnosis would just disappear from our lives & fade away into the background; becoming something we would just say was a “phase” that he outgrew.

The fact is, this is our life, and it has been every day for the past two years.  Even if he does overcome some of the diagnosis, he will always be an Aspie – he will have his quirks & his mind doesn’t work like most everyone else’s.  So, this is our life.  This is his life.  This is perfectly fine.  It isn’t the way I had envisioned things when I was 8 months pregnant & reading baby books about “what to expect,” but that’s ok.  The lesson is: Expect The Unexpected.  And, make no mistake, I wouldn’t trade this for “typical” EVER.  I love The Boy just the way he is; he is perfect.  I only want him to have the tools he needs in life to have the best life he can – to be as happy and healthy … but this is our journey, and it’s an ever-changing one. There are no books to help guide us on our way.  Expect the unexpected.

I also kept quiet also because I felt like I wasn’t entitled to have the feelings I have had: confusion, frustration, isolation, exhaustion, sadness.  How could I complain when The Boy’s case is mild – look at him one moment & he seems like a typical child, but in another setting you might say there’s something off, but can’t put your finger on it.  He is extraordinarily verbal, loving, outgoing … not like some of the children I’ve met with severe autism who are non-verbal & have never given their mother a hug or kiss.  So how can I justify feeling anything other than gratitude for this?  I must be a shallow, horrible person to feel frustrated with our situation at times.  How would anyone even understand?  Surely my friends with typical kids wouldn’t be able to relate.  So I said nothing.  Until now.

Now I’ve changed my mind.  I’m not going to be quiet about this anymore.  I am allowed to feel how I feel & that may change from one day to the next.  Yes, of course I’m grateful that The Boy is high-functioning, that he is affectionate and playful, curious, intelligent, creative and engaging.  Yes, his case is “mild.”  And I tend to focus on his strengths rather than his weaknesses.  But it’s not always easy.  Every day is different; some days are great, some are challenging.  And I didn’t even realize how much I work with him until a friend visiting from out of town pointed it out to me.  But that’s my job; he is my heart & I am his voice.

And I’m really going all out with my vocalization.  After two years of searching for my “tribe,” other moms who are parenting an Aspie kid around The Boy’s age, I have yet to find an active group near where we live, so I just went ahead and created a meet-up group yesterday.  I figure if I build it they will come, right?  I hope so!  There have to be other parents who are feeling stressed out, tired and in need of sharing experiences.  I’m here for you, mamas, and I’m ready to talk.

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4 thoughts on “Silent No More

  1. I’m so glad I’m in your inner circle. Starting a meetup is an awesome idea. You should post a link to it in your blog post. It’ll probably take a while to get going, but I bet you’ll find some mamas like you. xoxo

  2. My area started a social group for moms for kids on the spectrum. Moms will come out of the wood work! Good for you taking the lead on it, too!

    Also, you have every right to your feelings. My son is not high functioning, but is not “severe” either. I`ve felt guilty when my son is affectionate. Don`t!

    You go mom!

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