You gotta smile.  You gotta laugh.  If you can’t figure it out then come visit us… you will soon enough.  It’s hard to think that anyone can go through hard times, tough times, good times, sad times and all the other ups and downs in life without smiling and laughing.  It’s the next best thing to ice cream and bourbon (the first for you, the latter for me).  I’ve been around so many people in the last couple years that just don’t have the desire to smile or laugh and to me it is sad.  There are so many serious attitudes and personalities that don’t let humor in.  And all I can do is laugh at it too.  OK, I’ll admit that a lot of my own humor is generated from sarcasm but a lot of it is also good wholesome humor and fun.

Autism.  Sounds serious, right?  This was the only word the Doctor wrote on the page that had Shane’s diagnosis.  One word.  We took the results of Shane testing and his “diagnosis” and went to the team at the Sussex Consortium in Lewes, DE who we had met with the week prior about Shane and finding school solutions for him.  We had a meeting set up at our house and we met at the kitchen table.  After showing Kris and Susie the diagnosis… Brooke and I looked at each other and laughed.  We laughed at the fact that one word written on this paper summed up Shane to this point and would set the stage for every move we made going forward.  Really though, we did laugh, because we were expecting a much more in-depth diagnosis and summary from the Neurologist we met with.  You know, something with big words and test results and something that showed symptoms and a prognosis maybe.  Nope, just one word.

As Brooke and I met at the table with Kris and Susie we went over all the paperwork needed to get Shane started at the Consortium.  Little did we know at the time but we were entering a phase of our lives that would forever be changed by everyone at the Consortium and we met some of our very best friends here.  But more paperwork and more observations were needed.  Shane sauntered into the kitchen during our talk and was on a mission for some Pringles.  If any of you have heard the stories of Shane and Pringles, don’t spoil anything for everyone else.  Keep in mind that Shane was just about to turn 2 years old the week after this meeting.  For quite some time Shane had come to love Sour Cream and Onion Pringles (the green can).  But not just ANY Sour Cream and Onion Pringle… an absolutely perfect and pristine Pringle – no chips, dings, scratches, cracks or dents… it had to be perfect.  Susie and Kris did not believe us when we stated this and we laughed a lot about it but we had to have Shane show them.  Susie took out a Pringle, broke off a piece and handed it to Shane.  Shane took it in his hand, looked it over and threw it back up on the table.  “Not good enough” Shane was probably thinking.  Kris then tried to outsmart Shane by taking 2 broken Pringles and overlapping them so they “look” like one perfect chip.  Again, back on the table it went and a high-pitched screech of frustration followed quickly.  One last try by breaking the tiniest of tiny pieces (barely noticeable to the naked eye) off the chip and handing it to Shane.  He held it up as if he were looking inspecting a precious jewel – checking the light and the edges for any… NOPE, it wasn’t perfect either.  We laughed a lot through this process as our reality was visible to other people now.  Shane’s reality was coming much more into focus for his two newest advocates.  Shane did finally get his perfect Pringles and snacked a bit as he wandered around the table in the kitchen.  That is, before he climbed up on the table and started running back and forth on it.  Yes, he’d run about 4 steps from one person at one end to the other at the other end, non-stop!  No reason other than it’s just something he wanted to do.  We allowed it to further show Shane’s great comedic acts and finally set him down to run off into the living room to climb on something else.

So there we were in what many would consider a tough time.  We just got a diagnosis of Autism for our 2 year old son.  We were newly relocated to Delaware 2 months previously and we had a world of unknown “stuff” ahead of us.  And yet here Brooke and I were; in our kitchen laughing about the antics of our son with Autism.  We had to laugh.  It was always an outlet for us.  We would continue to laugh at every moment that was worth of laughing about.  And let me tell you – there are so, so many!

 

 

 

Laughing.  We do it all the time now, for many many years.  I laugh at myself as much as other people laugh at me (and sometimes with me).  I laugh in the moment and laugh long after the moment as well.  I hope you can find a way to laugh too.  It helps everything seem so much better… if only for a moment.  But then… there are more moments that follow.  Laugh.  Laugh a lot.  Laugh often.  If even for the silliest of reasons.  Just laugh.

Recently I saw a post on Facebook for a video from a popular singing show – Britain’s Got Talent.  The title of the video caught my attention, as many do like this, as it stated: “Viral 10 year old boy with Autism shines in Britain’s Got Talent 2018“.  This caught my attention for sure and I happily clicked on the video to learn more and see this young boy’s story and singing.  The singing was fantastic – and young Calum has an amazing voice.  However, sadly, this particular video clip made no mention of Calum having Autism but it was clearly placed in the video title.  This fact alone got me somewhat frustrated because why would you (whoever posted the video) put up a video with that title without even having anything in there to inform the viewer more about the subject?  Of course, my mind went even further with this because that’s so much of what it’s about in all of today’s media.  It wasn’t until I read into it more on my own and found out what the boy has to deal with and I finally came across some information and an interview with his Mom.  Calum has “high functioning Autism…”.

This got me thinking even more.  In the world of Autism there is the Autism Spectrum which is also widely understood at the Autism Spectrum “Umbrella” where many different classifications of abilities, disabilities and diagnosis’ are placed.  Shane was placed under this umbrella just before he turned 2 years old – almost 16 years ago.  But for us, there isn’t an umbrella.  To us, there are children, adolescents and adults… with Autism.  Now, don’t get upset with where you may “think” I am going with this.  For many people there is a problem with the classifications as well as putting so many people under the umbrella.

I believe this happens all to often, much like you will find with young Calum’s amazing story.  Describing Calum as having Autism may be accurate and I am going with the fact that this is a true diagnosis here and no other assumptions made.  However, when you view a story of a 10 year old Autistic boy that sings in front of thousands, he’s communicative and articulate and also has a recording deal coming his way you have to think about that a bit.  Then you look at others under the “umbrella” who can perform well… but in private.  Or others that can communicate only to their family or care givers.  Then there are the savants that have such an amazing mind that they are sought after in awe.  And, of course there are those that not as many videos like this show – individuals that struggle to do the most basic skills and get so combative that families are left scared and yearning for answers… and help.  But all of these people are just that, they are people; humans with differences and yet they are classified under one umbrella of many different characteristics in the Autism Spectrum.

I don’t want someone coming up to me and asking “Oh, your son Shane has Autism?  Does he sing like that boy Calum?” or “Does Shane know all the stuff like Rainman?”.  It’s different.  Very different for every individual person that has Autism, that is a fact.  But how we not only perceive each person and learn their own unique traits, we must also help each person have the best representation for what they are and not just what they can or cannot do.  Does that make sense?  I mean if we all want to be equal – and I truly believe that at the end of the day we are – we need to consider how and when “labels” are used.  It’s a very tough conversation to go through but at least consider this:  If you want to label someone or something… make sure you are doing it, or using it, for the right reason.  I don’t think Calum’s Autism will define his future.  From what we’ve seen with his singing ability – that alone will take him very far in life as long as his family helps guide his path and Autism should not be the justification for Calum to need a different or greater audience.  He’s going to do great things.

Feel free to leave some comments or feedback on this.  I’m not here to debate anyone, but rather give a perspective on a subject that can be tough to even discuss.

OK, I’ll admit that the title can probably be a little vague and can probably become a multi-part series (hey, maybe it will).  So, I’ll get to my point of my recent “thinkings” (I’m sticking with that word).  The last couple weeks have been a flood of emotions.  Seriously.  Even for me.  Many know already that we recently moved to Florida for school for Shane and, as stoic as everyone in our family has become, even the little things can shake you up a bit.  For example, Shane has been out of sorts since before we even moved.  But with all the activity of packing and organizing before the move – he became very anxious  – even more than usual.  It’s a lot different for Brooke, Ryan and Delaney.  They get it.  They know why we’re moving, where we’re going and what (for the most part) our plans are.  But that doesn’t work for Shane.  He does not interpret this information the same way, if at all.  Add to that the fact that he cannot convey his feelings at all and we are going to struggle a bit.  However, through these moments, like we have with other tough moments in our history, we find solace in the little things and we always keep in mind what we are doing and the reason(s) we are doing them.  You never quite know what it was that helped you get through it… you just do.  But there is a little intangible thing that impacts all of us at some point in some way.

Many people that know me will agree (maybe) that I am a HUGE proponent and advocate of “Inspiration“.  And I know with all my heart and soul that we all have to find our own inspiration.  Every uncertain moment we live in can shroud us in fear, uncertainty, and, in Shane’s case – anxiety.  All of which can be debilitating in the moment and have long term affects.

Inspiration in action:  Ryan has been going through some tough medical challenges with Crohn’s Disease for over 8 years.  Last April was a turning point for her when she decided to have a life changing procedure.  Throughout her decision making process she realized a lot of fear (more than previously), uncertainty due to the “what if’s” that we all talked about and all of that brought on a new level of anxiety that she had not been through before.  Very tense moments came and went but something happened for Ryan that changed her and she welcomed the challenges ahead and the idea of a new life… pain free.  That was it!  She was inspired to push forward due to her belief that her life was going to be so much better.  We believed it.  The Doctors, of course, believed it.  But for awhile, she didn’t.  But as soon as a really good and positive thought gets embedded in your brain, your emotions settle in to accept this thought… your mind is now inspired to move forward.  And not only was Ryan ready to move forward but she was excited.  She was happy and smiling and talkative with everyone.  As much as we knew it, she now finally knew that it was her time to feel better.  And with that little bit of positive talk, positive thought and focus… Ryan moved forward and tackled a monster.

Inspiration folks.  It’s what we all need.  We seek it out in the toughest and darkest of times.  You may not realize it but you do.  You find it in music and songs.  Like the song you now listen to over and over.  You find it when you hear about people helping others.  And so on and so on.  It happens.  It’s inspiration.  It’s what gives you the hope, promise, desire and even the little extra push to get through your toughest times.  You find it in observing others and how they treat those around them.  You find it in the biggest of circumstances or in the smallest gesture.  I’m not the biggest user of social media by any means.  But one of my most favorite things about Facebook or YouTube or Instagram is scrolling through the feeds to read and view all the different inspirational stories that people post.  Let me tell you, they are all better at telling a story than I am.  But they inspire me.  They help me believe tomorrow will be better.  To be thankful for what we DO have and to not waste the time thinking about what we DON’T have.

Right now, in the middle of what we have just taken on as a family.  And considering what lies ahead and the immense challenges we face in the near future.  There is a very calm feeling though, because I am inspired by the fact that this family is together.  Whatever is thrown at us we will handle – as we have handled so much before.  Ryan made a great comment just the other night after some disappointing and frustrating news at the time:  “We are a family who makes things work, Dad.  This is no different.  We’ll figure it out and make it work!“… Can’t disagree with that one bit!  I am inspired by Ryan and her determination in life.  I am inspired by Shane and his boundless energy and happiness.  I am inspired by Delaney’s genuine desire to help others and her love.  I am inspired by Brooke’s unrelenting love for our children and everything that she has overcome inspires me to believe (like Ryan said) that we will make things work.  SO much inspires me and I can find it when I need it.

How about you?  What Inspires you?  I’d love to hear it.  And, you never know, you may inspire someone else.

Like I said in my first blog post – I’m “not completely sure what I’m doing with this yet…” – and that still holds true.  I do believe the most honest, thoughtful and real stories and writings just happen organically.  Much like a conversation with an old friend when you just pick up where you may have left off so many years ago.  Or when all of a sudden on a Friday night you have 8 or 9 neighbors sitting in a driveway having drinks and eating takeout.  That’s the kind of stuff that is real.  That is what I hope you will come to find out is that this is real and that very little effective planning goes into anything in our world.

And with that, that is how we live in our household – especially with Shane.  Nothing is planned and if it is, it is going to be nothing more than a guide for us in that moment.  One of the many many hard things about having an Autistic child, especially a low-functioning non-verbal child, is that you do everything around them and their needs.  Over the years we have tried to not be that way for our girls but it doesn’t always pan out.  Brooke and I would make sure that one of us was always with Shane when we could be and that other was available to do things with the girls.  This was always tough because we have never done a lot of things like trips, outings, shopping, etc as a whole family.  And, when we did (and still do today) we plan accordingly:  We get Shane’s noise canceling headphones which he just started using more this year (yay).  We have a plan in place if he acts up and gets “fussy”; this usually means we can bribe him with McDonald’s or we have an exit plan and we sometimes take two vehicles to ensure we can bring Shane home if needed.  You can’t plan for every environment to be ideal for an Autistic person, that’s not how it works.  You can only do your thing and be ready to make changes as needed.  This is the life for Shane and this is the life for Ryan and Delaney as well.  It’s tough, it really is, but it’s what we do.

For the last year, before we took on a big move in early June, Ryan had been a host at a great restaurant in Minnetonka, MN called BLVD Kitchen and Bar.  The place is amazing with great food and even better service.  Now here’s what I mean when I talk about how we try to plan for our outings with Shane:  We planned some happy hour time with some friends and neighbors at BLVD one evening.  We don’t leave Shane alone with either Delaney or Ryan anymore (much more on that to come another time) so we were ALL going to BLVD with several others.  This is at happy hour, on a Friday, mind you.  Which was a great time to meet up and chat with people and relax.  We arrived to a VERY busy restaurant but Ryan had reserved a big table in a back corner, probably the quietest place possible (for Shane) and more out of the way for the lucky server to work with us all.  On the way we grabbed McDonald’s for Shane.  After all, it was Friday and he ALWAYS gets McDonald’s on Friday and Saturday nights for dinner.  So in we walk and Ryan gets us to our table and we set up Shane – really, our focus is on him and making sure that he’s happy and content if even for 10 minutes so we can chat with our friends.  The place got louder and louder with more and more people coming in so we got the headphones out for Shane and hooked them up.  He calmed a bit after getting agitated and asked for “home”.  Our friends were there and everyone took the time to say hi to Shane, Delaney and Ryan and, like all families do – we all kept an eye on Shane to make sure he was “OK”.  At one point about a 1/2 hour in Shane hopped off his chair and went to the corner and plopped on the floor – still connected to his iPad and with his headphones on.  This was actually good because he was happy and he was making the environment his own for the moment.  We hung out a bit more, had a bite to eat and we headed out.  Delaney and Ryan took over checking on Shane for about the last 10-15 minutes just to keep him engaged and distracted as much as possible – it was really busy by then and really loud.  This is what both girls do – they both look out for their brother… always.  But this is our life, we usually put Shane first and we all follow suit.  It’s not always fair for anyone and someday it could change.  This night was fun and Shane ultimately had a good time and never really fussed – but we were prepared.  It was the start of many, many more outings to BLVD Kitchen and Bar.

One thing that stands out to me when we do take Shane out anywhere is how we completely ignore people around us now that stare, gawk and whisper.  This never really got to us.  Brooke and I have always been ones to not let that distract us from caring for Shane.  I don’t even know if people still do it.  Well, actually I do because I have seen some people do it.  I don’t know if it’s because, despite his Autistic actions, Shane is still quite happy (most of the time).  He has an infectious laugh that gets everyone else laughing and he is very attached to his sisters.  So in public it comes off as “cute” to see.  Anyway, we still ignore the staring and gawking if it is visible.  Because I can look at our life at any moment and say I am damn lucky.

 

So here it is!  My first blog.  Not completely sure what I’m doing with this yet but we’ll figure it out as we go and I’m sure plenty of people will give me some feedback – like it or not – along the way.

You see I’ve been into writing for a long time.  I’m OK talking to people to.  With some recent changes in our family life I have some “down time” that now allows me the opportunity to give this a go.  I’m not a professional writer by any means.  I’m actually leaving that for our oldest daughter, Ryan, to do.  She’s well on her way and will put me to shame when she gets her work published (shameless early plug there).  But I do feel that she has inspired me most of my adult life so she can now inspire me a little more.

A quick introduction to my family is needed I believe but this will be brief because I don’t want to give out all the family secrets in my first blog!  My beautiful bride is Brooke.  We have been married nearly 23 years and I have been in love with her for exactly 25 years.  We have three amazing children who you will all come to know more as I continue to write and challenge myself to talk about things we don’t always talk about.  Ryan, as I mentioned, is our oldest and she is almost 2 years into adulthood and she is a fiercely loyal and caring soul.  Shane, our only son, is nearing adulthood but will always be with us.  Shane will be a focus for many of my writings and stories as you will come to find out.  Shane has Autism and is the highlight of our lives.  And our last born is Delaney who lights up our life every day with her wit, her love and her willingness to help others.  Believe me when I say we have a dynamic household that, despite other opinions, never really leaves a dull moment.  Actually, there is the occasional day of doing nothing in our house so I guess that’s not completely true… but close.  Then there’s the guy here typing away on this keyboard.  I’m just a guy.  Just a father of 3 great kids and (hopefully) a great husband to an amazing woman.  But I’m a Dad at heart mostly.  I crack jokes, tell stories, brag about my kids, work hard at everything I do so my kids can be taken care of.  Pretty simple life I’d say.  But, as you will come to find out… it has never always been that way.

My goal with this blog is to write about real life in the family of an Autistic teenager and what really goes on.  But also the family dynamic – good and bad – that makes an impact on all of our lives and those of the people closest to us.  I look to bring in perspectives from my kids and friends as well so look forward to some wise cracking to happen.  I hope you will take away some experiences that may help you or someone you know.  But most of all I hope you will keep reading to be entertained and know that, at the end of the day, you make your life what it is and you have a tremendous impact on those around you.

Thank you for your time and I look forward to seeing you again soon!

~Jarrett

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton