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The Start of Our Walk With Autism

Johnna and M

“What would it mean to you if I told you your daughter had autism?” That was the first question I was asked regarding M’s official diagnosis of Autism.  This question (in variation) has become one of the most common questions I get regarding M’s diagnosis of Autism.  “How did you feel when you found out?”  “Was that horrible?”  

 

A lot of Autism Moms describe the moment they got “the news” as devastating, or feeling like they got hit by a truck.  For me, those responses couldn’t be further from what I felt.  I felt relief.  I felt like a huge weight had been lifted and now everything was finally going to be okay.  Seem strange?  You’re not alone.  People look at me like I’m crazy when I answer those questions honestly but the road to her diagnosis was a difficult, sad, trying road and having an answer or explanation for it was such a relief for me.  As an infant, M was different.  She screamed (not cried, screamed) a lot.  She would scream as if I was hurting her all the time.  My neighbor, Debbie used to be able to hear her from her house and would come over after she got home from work.  She would take her and tell me to go take a break because she knew how hard that had to be.  Everyone who knew her was concerned.  I spent a lot of time in the pediatricians’ office because something just wasn’t quite right .  While she had medical problems as a baby and we spent a lot of time in the hospital, it didn’t explain her degree of discontent.  There was more to it.  There was, for me, this overarching feeling I had all the time that there was some sort of mommy manual I was supposed to get and never did because M didn’t follow what babies are supposed to do/like/be okay with.  I couldn’t hold her to feed her.  She HAD to have shoes on or she would scream.  She HATED baths.  She didn’t like the “normal” baby/toddler toys, she like hangers.  She didn’t sleep like babies are supposed to.  She wasn’t hitting the milestones in the right order or at all for some of them.  I felt like NOTHING I did was right.  

 

So 19 months into her life when I was finally told WHY all these things were happening, I was relieved.  I wasn’t the worst mom on the planet, there was actually a reason behind it.  When the doctor came in to tell me, she started by asking me the question: “How would you feel if I told you your daughter had Autism?”  I looked at her and said, “It would mean there’s a reason my child is the way she is and it means I can finally find a way to help her.”  Now bear in mind I had NO IDEA what Autism was.  Back when M was diagnosed it was before Autism was a widely known diagnostic label.  It was before Autism Speaks existed.  Autism, whatever it was, was a starting point for me to help my child.  Thus, from the moment we walked out the door of the Child Development Unit of Children’s Hospital we (M and I) embarked on one of the hardest but best adventures I could have asked for.

 

Of course no post about Autism would be complete without the obvious but necessary disclaimer: Most of what I will be writing about is directly related to and based off of M’s and my journey through this world with Autism.   Many of the interventions, tools, ideas and therapies I talk about that worked (or didn’t work) for us work for many children with Autism, not everything will work for everyone.  Nothing posted should ever be a substitution for medical advice or the advice from a team working with your child.