What's in a Label?

Labels are something most people run from.  People don't want to have a label slapped on them or their kids for fear of what others will think.  The stigma of a label is a whole blog post of it's own.  We personally know numerous families who know their child is different and struggles with certain things, but won't have testing done because they don't want their child labeled.  And I want to be clear I have no judgements on that.  Every family is different.  But there comes a time when hiding from a label doesn't work any more.  When there's something bigger going on that threatens your child's future, their happiness and wellbeing, you act.

Early on we knew something wasn't right. We didn't know what was wrong and reached out for help. We were told a lot of things at the beginning; "he'll grow out of this," "head banging is normal in children," "we know he's not autistic because he makes eye contact," "you just need to learn how to talk to him," or "he just needs more discipline." None of this advice eased our concern and it didn't help us in anyway.  All of those statements were ludicrous in our situation. We ended up spinning our wheels for a couple of years before we found the right help.

We were finally introduced to people who took the time to listen to our concerns, observe Charlie (for over a year before they started testing for autism), and offered tools that actually worked.  When they presented the idea of autism testing, there was a lot of discussion between Tyler and I and the provider, yet no hesitation on our part.  There was no hesitation because by this time, if we're honest, we suspected autism and we still had not tapped into all of the right resources that could help Charlie.  We understood that a lot of therapies, counselors and tools are not available if there is no diagnosis of some sort.  Now, I want to be crystal clear.....we did not go searching for a diagnosis just to open more doors.  We agreed to testing to confirm what we already knew and to open doors that would benefit Charlie and our family.  Charlie was diagnosed with autism when he was 4 years old, yet the symptoms had already been there for a long time.

We wouldn't change a thing along our journey.  These last few years he has come so far in his therapies.  He's tolerating a lot more, he's calmer for the most part, has less meltdowns, he has more coping skills that he has started using on his own without prompting, and he's slowly starting to be able to identify emotions, both with himself and with others.  Do we still have more to work on?  Absolutely!  But we're so proud of where he's at.  For us, without a diagnosis, we wouldn't be where we are today.  This week, Tyler and I were talking to Sunny's dog trainer, we hadn't seen him in over a year and before he left he commented, "everything seems much calmer here. You guys don't look as stressed."  And he's right.  Sure, there's still times of stress, there's still meltdowns and some sleepless nights, there's awkward social interactions that need correcting and constant hand over hand teaching of the most basic skills....but things are calmer.

For us, having a formal diagnosis on the record was the right thing to do.  We needed the extra help, because, honestly, we were drowning. To us, autism isn't a "label."  Autism is part of our daily life.  Autism is the differences we recognized in our son and the driving force that enabled us to get him the tools he needs to be successful in life.  It's nothing to be feared.  He is our son and nothing will change our love for him. Nothing.  Not a diagnosis, not a so-called label.

Not a Morning Person

Mornings are harder for some people.  This is especially true for Charlie, even more so on days we need to get up and moving to be somewhere.  Waking Charlie up is one of Sunny's tasks she's trained to do.  She was trained to respond to the sound of his alarm clock, go into his room, jump on his bed and gently nudge him awake.  Slobbery kisses are a bonus!

We have a video of this process to generally show how it works.  It's hard to see Charlie in the video, but he's there!  Sunny gets so excited about this part of her job, you can see her enthusiasm as she runs and beats me to the bedroom.  To her, it means she gets to see her boy!

This is just one of the many ways Sunny helps Charlie on a day to day basis!

What Autism Means to Us

April is autism awareness month.  This means you'll see your social media accounts blown up with people wearing blue and posting about autism.  It means you might see people using blue light bulbs in the outside light fixtures on their houses. It means you might even see news stations covering stories about autism.  But let me tell you what autism awareness means to us.

Autism awareness for us is daily, not a specific date on the calendar.  We live this every day of our lives and try to educate people every day about what autism is and how we live our life with it.  We write this blog to help spread awareness, and even though we might not write something every week, we hope that it reaches the masses.  Because people need to know the struggles, the beauty, and uniqueness of every individual with autism.

Autism awareness to us means showing people that it's ok to be different.  That it's completely fine to not fear what you don't know.  Ask questions, most autism families we know don't mind talking about autism and helping people understand what autism looks like in their life.  And trust me, there's no two autism families the same.

Autism awareness to us means knowing there's so much work to be done to educate others on how autism affects individuals and families.  Autism looks different for every person, for every family.  Autism in our house is structure and routines, it's therapies several days per week, it's rigidity and an inability to be flexible, it's the desire to line things up and categorize them, it's big, huge emotions and learning how to navigate them even though you don't understand them.  Autism for us is teaching and learning what feelings look like on other people and then how to react appropriately.  Most people know it's not cool to laugh at someone when they are crying or sad.  But for us, that's something we deal with and teach every day.

Autism for us means hardly ever being on time.  It means being on track to leave the house in record time just to be side railed because a sock doesn't feel right, or because today he's boycotting shoes, or because he feels the need to gather 37 keys to take with him and he can only find 32.  For us it means being at the store and sitting down in the middle of the isle because......well, sometimes we don't know why.  But it's being patient and meeting him where he's at.  It's employing every single tool, trick, and strategy you know in order to get him off the floor and keep moving.

Autism for us includes a furry 85 lb. German Shepherd service dog wherever we go.  Which means educating people not only on autism, but on service dog rules and etiquette wherever we go.  It means enduring stares and pointing fingers when we're walking at the mall or Costco.  But it also means we have a more regulated little boy because of this wonderful furry girl named Sunny, and the tasks she does for Charlie every day.  Is it a lot of work? Yep.  But we wouldn't change it for anything.

Autism at our house is daily meltdowns, sometimes self harm behavior, lots of tears, and aggression.  It's sensory issues and sensory diets, it's tools and equipment around every area of our house to implement the sensory diet that is so important to help his body and emotions stay regulated.  But you know what?  Autism for us also means a lot of beauty.  We have this incredible boy who has a heart bigger than anyone we know.  It includes tons of laughter because Charlie is such a jokester with a great sense of humor.  It means endless hugs and snuggles.  Our autism means endless energy and a drive for adventure every day.  And it's finding the good in everyone he meets.

Autism awareness month will mean different things do different people. Some despise this month, others make the most of this month to shine the spotlight on those they hold dear to their hearts.  We are beyond blessed by our little boy.  We wouldn't be the parents we are today if we didn't have our Charlie.  He's made us better people and taught us way more in the last 7 years than we ever could have imagined.