The Road Traveled – Part 1

April is Autism Awareness Month and today, April 2, is Autism Awareness Day.  I have been giving a great deal of thought to this month and day dedicated to Autism and what, if any, special meaning it may possess.  As many an autism parent would probably say, “I don’t need a special day or month to be aware, I am very aware of autism, every day, 24 hours a day.

To be completely honest, until this year I don’t think I even knew that April was dedicated to Autism.  With it being such a huge part of , how is that possible you might wonder.  Actually, I have been thinking the exact same thing.  But then I started taking a little walk down memory lane and the road that Johnny and our family traveled into the world of autism.  With a cold sweat I am recalling the bumpy trip complete with twists, turns and unexpected potholes.

I remember the same story I repeatedly told many doctors and therapists.  Yes, Johnny was full-term.  No, there were no complications during my pregnancy.  No, there were also no complications during delivery, unless you count he was born 20 plus minutes after I arrived at the hospital and I basically had to bite down on a piece of leather during the delivery, so… no drugs were ever involved.  Any feeding problems? Yes, he didn’t seem to interested in eating.  The doctors called him, “happy to starve.”  Nice, huh?  Yes, he seemed to like to be held.  No, he did not  have normal motor development.  He did not sit up until he was close to 9 months old and at 12 months he still did not crawl.  Not to worry, I was told, there is a broad range of normal.

Johnny at 14 months, sitting, observing, even then.

Johnny at 14 months, sitting, observing, even then.

What did I learn?  I don’t care how broad that range was, something told my gut that all this was not “normal.”  I just felt it.  That was at 13 months of age when he finally started to crawl.  By 18 months, when he took his first steps, I heard many a story about everybody and their brother that did not walk till later, “and they were just fine.”  “Really?”, I would say.  This is what my lips said but my heart was listening to my gut.

Finally at about 19 months he was fully motorized and had one speed…FAST!  And let me tell you, he was a Special Missions dream because he was quick and silent.  He uttered not a word.  All he needed was a pacifier and Thomas the Train and he was a happy boy.  Take one of those away…and he was not.

From the age of 19 months until about 3, silence and speed was a pretty scary combination for Mommy because during that time the Little Brother arrived and I wasn’t always as quick as Johnny.  One look down to “check” on Little Brother and poof, Johnny was gone.  This can’t be “normal”, my gut and heart repeated.  A 3 year old boy should not be “ok” walking out of a hospital and wondering in a parking lot, or taking the escalator in the mall to the toy department at Target.  Or another favorite heart stopper, taking a running dive into the deep end of the pool.  Every other 3 year old seemed concerned with “where Mommy was” but my Johnny seemed completely oblivious to his surroundings.  That is, unless they were dark, loud or crowded and then I knew he was aware.  How?  By his blood curdling screams.  Tantrums that could win Oscars.  How can this be within “normal range” my brain started to chime in.

I would have given this whole “range of normal” approach more thought while children slept and I had some down time.  Except for one small problem, Johnny did not sleep…EVER!

When Johnny was 3 he attended a local church pre-school.  His differences and social delays seemed obvious.  Finally, someone started to see things through my eyes and a pre-school teacher who was not afraid to “hurt my feelings” bluntly answered my cry, “do you think I should be concerned?” with a “Yes.”  To this day I am grateful to Ms. Barbara with her observations and honesty coupled with Johnny having Aunt “K” in the autism business we were finally on the road to somewhere.  My heart, gut and brain all agreed.

At about 3 years-old, Johnny was evaluated by early intervention specialists.  Some answers, but very vague ones.  Turns out, Johnny, does not “test well.”  Meaning, no one seemed to be able to “figure out” what was going on.  So with the very broad “developmental delay” label we entered the world of IEP’s and therapists.

Still, I just knew, this wasn’t the end of the story, but finally, not only was Johnny getting help, but so was I.  At last I was getting some answers as to why my basic parenting skills that I used on The Big Brother seemed useless on Johnny, why he ran endless circles in the living room, and why he was obsessed with lining up Thomas the Train and then looking at him from all angles.

When I look back at those years one question I ask myself, why?  Why did I go this mostly alone?  Why did I never seek out parents going through the same thing?  Connect with parents from school?  Wouldn’t it have helped?  Probably…but I guess I was so busy navigating the road we were traveling, I never thought to ask for directions.

(This is Part One of I don’t know how many posts, on our early Autism journey, when I was not quite “aware.”  Please check back to see which exits I miss and where the road takes me.)



2 Responses to The Road Traveled – Part 1

  1. Hilary says:

    I was reading this yesterday on my phone in a meeting and was totally lost in the post. It was so open and honest. I think your experience is what so many people go through… I have a friend who went through the same thing with her grandson. She knew something wasn’t right, but no one would say what it was. Eventually he too was diagnosed.

  2. Jessica says:

    I identify with this so completely. Ashlyn did not sit or walk on time and then once she was there was no sitting down ever. And oh the meltdowns. Ugh. We were also told that her delays were not typical of autism so she wasn’t diagnosed until later.

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