Asperger’s and PDD-NOS, what they mean to me

When I had my son I had absolutely no experience with children.  The only things I knew about babies came from “What to Expect When You’re Expecting.”  So, naturally, I assumed all the difficulties I was having came from my inexperience.  He screamed.  He wouldn’t sleep.  He ran wild in public places.  Like many of those who saw us out, I blamed myself.  Clearly everything I tried with him was ineffective and I didn’t know what else to do.  He was in school before I even considered having another child.

Riley was born when he was seven.  She was his polar opposite in pretty much every respect.  He wouldn’t sleep.  She seemed to mostly sleep.  He wouldn’t stay in bed.  She wouldn’t get out.  Except about once a month she would just scream pretty much all day and there wasn’t a thing I could do.  Any attempt to calm or soothe her would just make it worse so I just had to put her someplace safe and let her go at it.  As she grew we noticed other things.  Missed milestones and odd behaviors.  She didn’t walk until 17 months.  She would take her books or toys and make lines across the living room floor.  The doctor we were seeing at the time wasn’t concerned.

I was, though.  I was downright scared.  My child should have been speaking by now and she was only occasionally saying a single word.  She wasn’t interacting properly with anyone other than me and even that didn’t seem right.  There were a lot of things that bothered me but the big thing was her lack of speaking ability.

When she was four years old the clinic we were going to got a new pediatrician.  The day we heard there was a new doctor we made an appointment and took her in as soon as we could.  Riley was just sitting on the exam table, kind of slumped over.  The doctor asked us a few questions and tried to talk to Riley.  We weren’t in the office for 10 minutes before she just handed us a referral to a pediatric neurologist.  That really didn’t do much to lower my anxiety.

So we went to the neurologist and after a brief interview she told us about PDD-NOS (neither of us had heard of it before), gave us a pack of information and a glowing prognosis and sent us on our way.  The effect that had on me was so… unexpected.  I realized that I had been blaming myself for her missed milestones.  I wasn’t giving her enough attention.  I wasn’t reading to her enough.  I just wasn’t doing enough.  But now I realized it’s not my fault.  It never was.  And now I can fight it!  My enemy has a name so now I can find its weakness and help my precious girl!  I felt absolutely relieved, almost happy.  Not that she has this struggle in her life but that now I know what she’s facing and I can help her.

It was about this same time that I heard of Asperger’s Syndrome.  Wow!  That was another huge revelation!  I’d been carrying this guilt of being an ineffective mother with me for so long and that also may not have been entirely my fault!  It was another year before we got Tyler officially diagnosed but what a difference just knowing about Asperger’s made!  I read about these kids who were just like him and connected with other mothers having similar issues and I was able to help him in ways I never could before.  If ignorance was my enemy, information was a very powerful ally.

I would advise any parent who is not sure what’s going on with their children if their teachers or doctors suggest having them screened, do it.  Don’t be scared!  Get all the information you can and use that to help your kids.  Even if you don’t want to go for a diagnosis, still get the information, network with the parents, use the techniques.  It’s very empowering and helps everyone a whole lot more than making excuses, especially your little sweetheart.

So what do Asperger’s and PDD-NOS mean to me?  Empowerment through information and an enhanced ability to be the mother my children need me to be.  And I really don’t know what’s more important than that!

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Posted on October 10, 2011, in Asperger's, Autism, PDD-NOS. Bookmark the permalink. Leave a comment.

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