Verbal Doesn't Equal Communication

Most people think that if a person is verbal, they have no communication issues.  That couldn't be farther from the truth.  Our son Charlie is verbal.  He can carry on a conversation with you, he can tell you what he needs/wants (sometimes), he can tell you what he sees, hears, smells, etc. But many times he has a difficult time forming his thoughts into words- especially when he's overwhelmed, frustrated or upset.

Charlie using Sunny to stay calm, distracted and grounded.

There have been times when Charlie is telling a story and ends up repeating a word over and over because he can't seem to get the next word out or form his thoughts enough to get the remainder of the story to come out.  Many times he'll give up, which makes Tyler and I sad to see.  Other times he'll be able to remain calm and tell us that he'll try again when he remembers what he's talking about.

Today Charlie was trying to tell me he wanted to watch a movie.  He had a specific movie in mind, but couldn't tell me which movie he was talking about.  It didn't help that he didn't remember the name of the movie.  So when he tried to explain what happened in the movie- and couldn't do that successfully- he got upset and frustrated and gave up.  When I tried to help him through his thoughts- who were the people in the movie?  Were there any animals in the movie? Was it a cartoon movie or a real people movie? He couldn't give me any answers.  I could tell his mind was spinning- he just couldn't get it all into words.  It takes an enormous amount of patience to help him get through these moments, and I'll admit some days it takes a large amount of energy to show up with that patience.  I simply waited for him to be ready.  I told him that I'd be ready to listen whenever he was ready to try explaining again.  I'm not joking when I say I waited over a half an hour for him to try again.  But when he came back to me he had all his words ready and was able to explain what movie he was looking for.

Luckily Charlie was able to stay calm while gathering his thoughts- coloring inside a box.

We've come to rely on Charlie's non-verbal communication as cues to how he's feeling when he can't adequately describe what's going on.  We know cues like his body getting tense, a certain moaning sound he makes over and over when he's upset, when he gets quiet and won't make eye contact with us, when he can't follow direction or certain tasks.  Some days it's a guessing game.

Please Be Kind

With Halloween upon us tomorrow I thought it would be important to put this reminder out there.  Be accepting of all the little ones visiting your doorstep on Halloween.  Be accepting.  Be kind.

The kiddo grabbing more than one piece of candy may struggle with fine motor skills or the kid who takes forever to choose a piece of candy might have motor planning issues.  A kiddo who doesn't say "trick or treat" or "thank you" upon leaving may be non-verbal.  Or the kiddo who looks disappointed when seeing the bowl of goodies may have allergies and can't take anything from those options.  And the little one not wearing a costume may have sensory issues or Sensory Processing Disorder and can't stand the feel of a costume.

Sometimes kids with special needs don't even know what is going on or why they are supposed to be dressing up or going door to door.  Children with autism may get easily overwhelmed with the costumes, people everywhere, noises, sugar, and the excitement of the other kiddos around them.  Keep in mind it takes a lot of planning, preparation, flexibility, and courage for special needs families to navigate things like Halloween.

Last year Charlie was excited about being a police officer.  It was the first year he really took interest in actually wanting to dress up.  So you better believe we did everything we could to find him a police costume.  He kept the costume on for about 10 minutes before deciding he couldn't stand it any longer, and took it off.  Luckily we were trick or treating in doors when that happened and he could easily walk around without freezing.  This year Charlie is already wavering on his decision to dress up.  At first he said he would be a police officer again, but ever since then (that was several weeks ago) he has said he isn't dressing up.  I guess we'll see what happens when everyone is getting ready to head out trick or treating.

Just remember to be flexible this Halloween and above else, be kind.

A Different Way of Life

As much as having a service dog has been helpful for Charlie, it still brings it's challenges.  We want to thank all of the people who have embraced this new way of life with us, those of you who have welcomed us AND SUNNY into your home for visits and playdates or those of you who have accepted Sunny as another member of our family.  You have no idea how grateful we are to those of you who don't even bat an eye at the 80lb giant laying under the table when we come to visit you at your house. Thank you for being so warm and welcoming.  We appreciate all of you who never second guess having Sunny with us during a playdate- no matter where we are. 

Even though at times it seems like she isn't doing anything, she is helping Charlie far more than it appears.  Even though Charlie seems to be doing wonderful while we're visiting or out and about, it's the aftermath, the transition of our activity with you to going home that is the hardest for him.  That is when he feels comfortable enough to let go of everything he has been holding together during our time with you. It's not something personal to you, it's something that happens no matter where we are.

And if you happen to be with us when Sunny is off-duty, thank you for realizing she isn't a typical "pet" and still has an important job to do at a moment's notice.  Even at home when she doesn't have her vest on, Sunny can be "on-call" at any time.  We never know when Charlie will go into meltdown mode or have difficulty with something that requires Sunny's intervention. 

If you have friends/acquaintances/family that have a service dog, I ask that you please be aware of how different a person's day to day life can be-even with a service dog.  When given the choice, I'm sure many of us service dog teams wish there wasn't a need for a service dog.  But since there is a need, we thank you for embracing this different way of life with us.  When you accept this and embrace it- you will see what a wonderful relationship this is for Charlie and Sunny (and our whole family, really).