"He doesn't look autistic"

Since awareness and education are partly why we wanted to start a blog, I thought I'd touch on April being Autism Awareness month.  There seems to be a month for everything these days, right?  Breast Cancer awareness month, Irish Heritage month, Women's History month, Adopt a rescued Guinea pig month (seriously, it's out there).  And honestly I never knew there was an Autism Awareness month.  But my thoughts around this....shouldn't we be educating and raising awareness every month?  Not just in April?  Well, I hope we can serve that purpose through this blog even beyond getting Charlie's service dog. We want to be a light for others who may feel lost, broken, confused, frustrated, worn down, or alone on their Autism journey. 


Maybe you've thought it.  Maybe you've said it.  "He doesn't look autistic."  We've actually heard this many times, and no we don't take offense to it.  Yes, when you look at Charlie he looks like any other little boy.  And if you're around him for short periods of time you may wonder what we're talking about when we say Charlie has Autism. It goes a lot deeper than how he looks.  And yes, he might seem fine for short periods of time.  The truth is, he's smart. He can hold himself together quite well for a long time.  And we have seen this over and over and over again.  Charlie had been going to the same daycare for over a year before our daycare provider even started seeing any of the behaviors we were warning her about.  She couldn't understand what we were talking about (and that's understandable when everything seems fine!).  He does really well at school.  So much so, they have never seen a lot of what we see at home.  Sure, they see some rigid behavior, not wanting to cooperate, but they have never seen the hardcore stuff we deal with on a daily basis.  Even some of our family has yet to fully understand what we deal with!  This baffled me for the longest time.  I didn't understand why my boy was fine in some situations but as soon as he got home, he would totally melt down and would be inconsolable and destructive for hours.


It's quite common for kiddos with Autism to be able to hold themselves together in certain situations and make it seem like they are doing fine.  But as soon as they get home or in an environment where they feel completely safe and comfortable, they will let down those walls and release everything they've been feeling while they've been away from home.  This happens with Charlie most days of the week when he gets home from school.  It happens on the weekends or holidays when we're at other people's houses for longer periods of time.  We often think- "great, we all had an awesome time.  Wasn't that wonderful? Maybe we're making strides in being able to do more things outside of the house!"  But then, BAM....we get home and the meltdown begins almost immediately.  Sometimes it even begins before we get home and it starts in the car. And it's usually when we're in the throes of these meltdowns that my husband and I vow to never go to another social gathering again.  It's horrible.  It's miserable and it's frustrating.  And that's only how Tyler and I are feeling.   I can't imagine how much more horrible it is for Charlie.  He doesn't want to feel like this.  He doesn't want to act like this.  He can't help it.  This is how he communicates with us when he's feeling overwhelmed, frustrated, and anxious.  He doesn't know what else to do. But part of his weekly therapies include learning how to deal with these feelings in a healthier way.  His service dog will be able to provide a calming presence and help ease anxiety when Charlie is feeling like this. 

If you are with our family for family functions, social gatherings, etc please don't be alarmed if we need to leave suddenly or can't stay as long as we had hoped.  Tyler and I try to keep a close watch on Charlie's demeanor and hope that we can intervene before he starts to show signs that he's getting overwhelmed.  But sometimes this isn't always possible and we push it too far which means we need to leave ASAP.  Many times we choose to decline invitations to do things with our friends and family because we just know it won't be a good situation or if Charlie has had a particularly rough day/week.


"Sorry, we can't be there, Charlie has had a bad day," "I can only stay a short time, Charlie is waiting for me," or "I have to leave early, Charlie is having a tough time and won't go to bed."  Seriously, our life is so incredibly different than most people's and we're not using him as an excuse.  It's just that we have to do things so differently than most and if we don't take certain measures, everything will spiral out of control. Be patient, be understanding- it really goes a long way.

And there is much, much more beneath the surface that goes on that many people don't see. Crossing my fingers this weekend goes well. I am away from home for the night and all day tomorrow and this is always challenging for Charlie. Mom is one of his comfort items so when I'm gone it's hard for him to stay regulated. We've been prepping him all week for this and even practiced some ways he could tell dad if he's feeling sad or missing mom. Wish us luck!