Where We've Come From...

For those of you who do not know us, let me give you some background.  Our son Charlie was diagnosed with Autism at the age of 4.  We knew well before getting the diagnosis that something was a little off.  Even as an infant Charlie had major sleep issues.  He didn't start sleeping through the night until he was 4 years old, and even now, it's not consistent.  When he was a baby he was never content, always needed to be held, moving, held facing forward so he could see everything going on. But even then, he was fussy and just couldn't be satisfied.

It was really easy to compare him to his twin brother who was completely opposite, but we knew we couldn't base anything off of his twin, because let's face it...even identical twins can have polar opposite personalities.  However, we did have experience with our oldest child and of course being around other babies as well.  Charlie has always been very different.  At age 2 we began working with the Birth to 3 program for Early Intervention services.  That was great, gave him some extra support and attention in areas he was behind in.  However, they assured us what we were facing wasn't Autism, because our son was able to make eye contact and he was social- he would interact with people.  I didn't question them, what did I know about Autism? He then began Early Intervention Pre-School at age 3 and now he will be planning to go to Kindergarten this Fall 2017.  So by age 5, Charlie had already had quite the adventure.

At an early age we could see some big warning signs.  His poor sleep was one of them.  Another was the way he went from completely calm and playing to outrageously upset within seconds and most of the time there was no indication of what would set him off.  And then began the head banging.  When he was in one of his fits he started banging his head on our walls.  And this wasn't just your normal, toddler head banging...it was the put-holes-in-the-walls type of head banging.  Holes in sheetrock....by a toddler!  It was disturbing and when we would bring it up to our Pediatrician he brushed it off and told us some head banging was normal.  It wasn't until we got some videos recorded to show our Pediatrician what we were talking about, when the Pediatrician realized we were talking about something very serious.  This began the very long road to find our boy some help. We didn't know what we were up against, but we knew something wasn't right.

We started at Mayo Clinic in Rochester, luckily right in our back yard, and went to see a Developmental Pediatrician.  Several visits later and Charlie began PT and OT services but no idea on what was really going on with him.  He eventually completed a sleep study that showed nothing.  There was no reason why this boy was not sleeping!  We really were getting no where with Mayo.  It was our school district that was actually the most helpful in finding some support for Charlie and our family.  We got hooked up with a social worker within our local social services who then referred us for some individualized and family therapy services.

Finally, after navigating this strange road for a couple of years we felt like we were finally getting somewhere.  We had people working with us that listened, seemed to understand the difficulties we were facing and were dedicated to helping us find solutions.  We have now been working with this team of people for over a year and a half and we couldn't be happier.  It was with this therapist that we decided to have further testing done.  And through that testing, found Autism.  It was with this diagnosis that we learned that there are so many different levels of Autism.  Autism isn't just hand flapping or non-verbal.  No 2 kids with Autism are alike.  Kids with Autism can do well with eye contact and they can be social!  Others may have more difficulties in that area.  Some are verbal, some are not.  Just like each person in this world has their own personality, talents and struggles....so does each kiddo with Autism.

Like I said before, we had speculations.  We knew something was up, but didn't quite know what.  So the actual diagnosis wasn't really a surprise, but it was still a punch in the gut.  Words that are still hard for my husband and I to swallow.  My heart is pounding even as I write this, but I know we need more education, more awareness within out communities about Autism, because I believe it's still largely misunderstood.  So, here we are, trying to raise more awareness, educate others so that people can understand and hopefully be accepting- not only of my son, but other kiddos who face similar- or completely different- difficulties.

Left to Right: Christian, Easton, Charlie