A Letter to Our Neighbors

Dear Neighbors,
You may know us personally or you may know us as the family with the three very active boys and the German Shepherd.  What you may not know is that one of our boys has autism and our family functions a little differently than most.  We know the weather is starting to get nicer, people have their windows open and are spending more time outside.  I want to apologize if your relaxing evening on your deck is interrupted by intermittent screaming or an autism meltdown.  We don't mean to break the silence.  But we don't ever know when to expect a meltdown to hit.  In fact, it's a daily guessing game that we lose constantly.

This time of year is a big time of transitions.  The weather is changing, school is winding down, there's the anticipation of a Summer nanny and lots of time outdoors and in fresh air.  There's the change of a daily school routine to a more relaxed routine at home.  Transitions are very hard for Charlie and he starts feeling these transitions way before any of the rest of us do.  And when he feels the transitions starting, behavior changes and meltdowns increase.

Don't be alarmed if you see us running after our child on the sidewalk (or sometimes even down the middle of the road), chances are he's running after mom because he doesn't want her to leave. Ever.

If you see us in the yard or on the deck trying to do a haircut- that's exactly what we're doing, a haircut.  I assure you we are not harming him although he makes it sound like we are.

You may hear us prompting Charlie repeatedly or asking him to do the same task over and over.  It's not that he's being defiant or not listening.  It's just that he gets easily distracted and will sometimes forget what he's supposed to be doing.

Don't worry if you hear a child screaming and crying in our house for long periods of time.  Sometimes meltdowns can last hours.  There could be many reasons why this is happening; it could be a tough transition, a change of plans that he doesn't understand, the weather, having a hard time socially with the other kids in the neighborhood, he may want to go to the park for the 400th time today, or because the grass is green.  Sometimes we have no idea what brings a meltdown on, but usually it's because he's trying to figure out how to regulate his emotions.

Charlie has a team of therapists that work with him each week to work on different aspects of life that are harder for him.  Things like how to play appropriately with other kids his age, how to recognize and manage his emotions, how to respond to other people's emotions, eating, how to play games, and how to be in the community.  So when you see various people coming and going from our house numerous times a week, it's therapy.  With this being said, if Charlie is ever playing with your kids and it appears he's struggling or having a hard time playing or interacting with the other kids, please come get Tyler or I and we can help.

Yes, we have a big German Shepherd but you should know she's different than most family pets.  She's Charlie's trained service dog to help alleviate symptoms of autism.  Sometimes you might see us involving Sunny in activities with Charlie in the yard.  Don't be alarmed if you see Sunny laying on top of Charlie.  She isn't hurting him.  Charlie often needs deep pressure therapy to calm down or regulate and Sunny provides that deep pressure to him by laying on top of him.  If you see Sunny trying to put Charlie's arm/hand in her mouth, she isn't trying to bite him.  She will often try to get his attention or lead him to where she wants him to be by putting her mouth gently on his arm.  She actually has a big job to do.  So if you see her lounging on the deck in the sun, know she's off-duty and doing one of her favorite activities.  Please know she is the kindest, most gentle dog and she won't hurt you or your children.

We love our neighborhood and know many of you personally.  We love that the kids on our street play so well together and we look forward to meeting some of the newbies on the block.  Just be aware that our family works differently than most.  We love our boys more than anything, but some of the sounds that come out of our house show just how much autism takes over.  We are open about our life.  If you have questions about autism or service dogs, just ask.  We are usually more than willing to share!

Sincerely,
Tyler & Kayla King

It's Only a Bike Ride

We went on a family bike ride tonight.  Not a big deal, right?  Well, for us it is.  This is one of those really common activities that families do together, but for our family it's one of those tougher activities.  This is one of those activities we need to work really really hard at to be able to do together.

Usually if we try a bike ride it's a constant meltdown or trying to avert a meltdown the entire time.  It's constant complaints of not being fast enough, not the first in line, not the first to the corner.  It's making it a quarter of a block and needing to turn around to go home because he simply can't stand to go any further.  It's constantly being right next to him for fear he'll drive into the road- into traffic. Or it's going on a bike ride- the 4 of us- while Charlie is at a therapy session.

But tonight was different.  We were able to go as a family of 5 (+ Sunny).  All of them listened to directions.  They all rode their bikes safely.  We laughed.  We raced.  We were goofy.  We were relaxed.  We had fun.

We went on a family bike ride tonight and it was spectacular.  Amazing.  Breathtaking.  It was exactly what we needed.  And I pray we have more and more family activities just like this.

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.