I am finally ready to share...

Charlie is autistic.  I just had to Google if you say “has autism” or “is on the spectrum” or “is autistic” because I do not even know how to say it correctly.  When Charlie was in first grade, he began having emotional outbursts or what we would call “freak-outs”.  This would occur when Charlie was frustrated or upset and he could not articulate his feelings.  His first-grade teacher (formally a special education teacher) also noticed sensory issues as well.  He was also having problems making friends.  Now, if you know Charlie you know he is the friendliest, most talkative kid you could ever meet, but his peers were having problems developing relationships with him because he would only want to discuss his topics on interest ie. Minecraft.  His wonderful teacher created a Minecraft zones of regulation chart to help him verbalize his feelings and that did help, but ultimately, she recommended getting him evaluated for autism spectrum disorder.

I am not super familiar with autism.  When I was a teenager, I babysat for a little boy that had autism and he liked to play with trains.  Only trains.  He was not very social or and did not talk a lot, but as long as we played trains or watched them on tv, we got along well.  He was very quiet and chill, and never really had tantrums when I was with him.  He was also, completely different from how Charlie behaves.  Charlie is talkative and loving and kind and funny.  He doesn’t even like trains all that much.  So, when the teacher suggested he get evaluated for ASD (autism spectrum disorder) I was a little confused, but we decided to go ahead and get him evaluated by the school.  Charlie attends Holy Name Catholic School, so the services would have to come through Beech Grove Public Schools.  As the end of 1^st grade drew near, we were called to a meeting where we were told by the team that evaluated Charlie they felt that he did fall on the autism spectrum and that he could receive resources like occupational therapy and a specialized learning plan to assist him.   Not really knowing much about autism, having extra time to take tests and being able to take breaks when needed seemed like it would be good for any kid, so we established his IEP (Individualized Education Plan) and left it at that.  We talked with his pediatrician, and she felt that if the school was providing resources there was no reason to him officially diagnosed, so we went on with our lives under the assumption Charlie might have autism, but maybe he doesn’t and is just different.  My husband and I were in denial.

People around us who we shared the news with were surprised and some even said “he doesn’t have autism.”  Even my husband felt this way.  I knew he was autistic because from the moment this all began, I started researching and watching Charlie’s behavior.  He had trouble maintaining eye contact when you would speak with him, he had trouble socially with playing with other kids, he danced everywhere, he didn’t really walk.  There were things I began to see and notice that further reinforced the idea that he could be on the spectrum, but since a doctor had not diagnosed him, it wasn’t real.  We secretly lived with this fact and told no one but close friends and family (not even our whole extended family knew) because I did not want the stigma of being autistic on Charlie.  He was just Charlie.  All kids are weird; he was just a little weirder.  If people knew he might be autistic, they would treat him differently and judge him.  Since day one, my biggest fear was that people would bully and make fun of him and he would be hurt.  I wanted more than anything for that not to happen to him, so I lived in a bit of denial and just kept going with our lives.

As 2^nd grade began, Charlie was doing better with his “freak-outs” and his 2^nd grade teacher was very supportive and accommodating to Charlie’s needs.  He seemed to be doing well with some behaviors we could adjust to like his sensory issue with being wet.  This boy will swim and bathe and run through the sprinkler, but the minute he is not supposed to be wet and becomes wet it equals a meltdown.  His trip to the zoo in 2^nd grade led to a huge ordeal when his socks got wet with rain and he had no back-ups (they are now kept in his backpack for easy changes).  They had to take him to the dolphin pavilion and let him dry for 30 minutes before he could rejoin the class and continue the fun.  He continued wearing ear protection at school events when it would get too loud as well.  He was different and his classmates were beginning to notice.  They started saying things to Charlie about him being weird, but it didn’t bother him. He would tell me about it nonchalantly and a matter of fact like “how can I be weird when I am just being myself.”  He is so smart and right, he was just being himself and that’s not weird.  We continued to work with the school when situations would come up, or he would have “freak-outs” but all in all it was a pretty good year.

At the start of 3^rd grade, we learned that Charlie would have his first-grade teacher again for 3^rd.  We were happy about this because he knew and liked her and she knew how to handle Charlie and make him feel better when he got upset.  As Charlie moved through 3^rd grade, he began to have more “freakouts” and these were more intense and harder to get under control.  He would have to leave his classroom a lot to calm down with the resource teacher. A lot of these “freak-outs” came from frustration or indecision on Charlie’s part that would lead to a total shut down on his part.  He was having situations daily and I started to flinch every time the phone rang at work for fear it was the school.  Charlie was having a hard time and now he was able to articulate that “no one liked him” and “he didn’t have friends”.  This broke me.  My biggest fear had come true.  Kids were calling Charlie weird and telling him he was autistic.  Up until now, we had not told Charlie he was on the spectrum because we knew if we told him that he would tell everyone and I was afraid he would be judged by others.  Well, it didn’t matter.  The kids knew he was different and it had begun to affect him.  When last year he would let it roll off his back, this year he was hurt.  He would cry to us at home after bad days and tell us what kids had said. 

I know everybody gets bullied sometime in their life, but the moment you hear your child say, “I wish I wasn’t alive.”  I have no words.  As I write this tears stream down my face because the first time he said that, we were floored.  Jim and I both cried.  Our awesome kid didn’t realize how awesome he was and the kids at school won’t realize how cool he is until they are much older if ever.  I’ll never forget the day I picked Charlie up from school and he kept yelling a classmate’s name over and over trying to get his attention.  The classmate heard Charlie, but he was ignoring him.  I could tell from the child’s cues that he was not interested in speaking with Charlie, but Charlie couldn’t see that.  It never even occurred to him that his classmate wouldn’t want to talk to him.  We realized that we needed more help than the school could give us and so we decided to go to a psychologist and get Charlie officially diagnosed ASD, so we could get him the help he needed socially to fit in better.  His inability to be reciprocal in conversations and ask about other’s interests, or read social cues from other kids, or play games other kids wanted to play all of this was making him an outcast. 

At the beginning of this year, we started the evaluation process to get Charlie diagnosed.  We knew about the possible ASD, but we also thought he may have some ADHD that was affecting him as well, so they tested for both.  It was a difficult process for Charlie, the testing was timed, which set off his anxiety and shut him down.  We had to coax him out from under the doctor’s desk multiple times to get through the process.  When the day came to meet with the psychologist and get his results, I wasn’t surprised that she had coded him as autism spectrum disorder and unspecified ADHD.  I wasn’t surprised, but that didn’t stop me from sitting in my car and crying.  I couldn’t deny it anymore and I had to accept that Charlie was on the spectrum and saw things differently than most people do.  I cried because my perfect baby would have to carry this with him always.  It broke my heart.  We don’t want people to label Charlie and stereotype him, or underestimate how smart and funny he is.  He is such an amazing person, and we want people to see that.  The Charlie that has the coolest ideas and sees no limits to what he can do.  There is so much we will need to learn and hard days ahead, but I am tired of being scared of what everyone will think of me and my family.  I am tired of being in denial and not accepting Charlie for who he is.  So today as it is World Autism Acceptance Day, I just want to say that our son Charlie is autistic and has ADHD and we proud to be his parents and take this journey with him.