Pretty vague title to kick off this blog post, eh?  And it is meant to be that way and hopefully get some people thinking.  After all, I need some help with all the other “Thinkers” here reading along.

Let’s start with “Perception”.  What is it and Why do have a blog post about it?  By definition (Merriam-Webster HERE) it is:

It’s been some time since I’ve posted up here on the blog.  And let me tell you, it’s not for the lack of desire or the lack of content… I have plenty of both.  It’s probably more due to the fact that I have so much to process these days and sort through – what to write about now, how to organize my thoughts, what is really important… these are all things running through my head regularly.

So lets kick this off with an update that all of you have been waiting for.  Many of you already know what is coming in this blog post and others may not.  And while some may feel better and have a true understanding following this post, there are others that really couldn’t care less.  And for those people, I’ll just say you may not want to read anymore here anyway!

December 19th, 2018.  It was just over a week ago that we rolled back into Minnesota with all of our humble belongings in tow… AGAIN!  For those that are REALLY paying attention, you may remember that it was EXACTLY 10 years ago on this same date we arrived in Minnesota the first time after moving from Delaware.  No, we did not set that date on purpose, it just worked out that way.  I “announced” our plans to family and some friends before we left Florida (back in November) when we made the decision to return north and started our planning.  I even put a short post of Facebook about it.  That announcement met mixed reviews from some, raving applause from others and complete silence from some too.  Sure, there is a “WHY” in all of this and I am getting to that.

Not to re-hash our history again but most of you know we moved to Florida to allow Shane to gain entry to the Els Center of Excellence in Jupiter, FL.  The school for Autistic children and teenagers is due to branch out into their Adult Services in the near future.  We were encouraged by what the programming here was set up to do and we moved forward believing this would be a fantastic opportunity for Shane to thrive as an adult.  Until that time he would be in the school as a student continuing to learn and develop any and all skills he could work on.  This was the hope.  This was our goal.  This presented a lot of uncertainty.  This was not going to be easy.  This got prolonged every month.  This was ultimately not going to happen.

We sat in the waiting room at the Dentist office in early November while Shane was having surgery on his mouth (that is worthy of another blog post!) when we received the disheartening email notifying us that the next lottery for Els Center would not be held until May of 2019 and, if selected, Shane would potentially start in August of 2019.  In addition, Shane would be entered into a “work-study” program which we were completely unaware of.  I remember saying out loud “Oh Shit” and tossing my phone on the table.  Brooke looked up and asked “What?  What’s wrong?”.  I told her she should check her email too and she did.  She read the same email but came away with nothing, unable to even say “Oh Shit” at that time.  I think it was more of the shock of the email.  The stunned look on her face said plenty!  Pretty basic in routine and response from the school, but nonetheless it was an email that would direct us to through the next 24-48 hours of uncertainty.  Shane came out of surgery well enough and we headed home to rest and get him settled.  Brooke and I both needed to digest the news from the school and keep an eye on Shane for the rest of the day.

That evening before dinner Brooke and I had a chance to talk together about our current status in Florida and what we were doing and what we needed to do moving forward.  She came right out and asked “Do you want to move back to Minnesota?”.  I took a second, looked over at her and said “Yes.  I don’t think we have a choice”.  We proceeded to review several topics and get ideas formulated of what that means and if it is really possible.  As much as we thought about, planned out, accounted for and worked for the move to Florida; we knew it was going to be even harder to get back to Minnesota.  Ultimately, after we talked through scenario after scenario, we decided to talk to the girls and get their input.  Brooke and I were already under the consensus that we should return at some point.  After dinner that same evening we gathered the girls into our bedroom (the one we’d been sharing with Shane) and had a little chat about the potential move.  Brooke and I could get a sense of relief right away on the faces of Ryan and Delaney.  They had seen and lived through the struggles of the previous 5 months and they were always a part of the conversations we have had up until that point.  But they both smiled right away.  Both of them had big eyes of excitement.  And both of them jumped in with questions “When?”  “Where?” “How?” and many more.  Soon enough we were going to be able to answer those questions but for the moment we were all content to agree that returning to Minnesota was going to be in the best interest of us as a family.

I bet it’s right about now you may be wondering something like “Aren’t there other schools in Florida for Shane?”  “What else could you have done?”  “Did you really have to move back to Minnesota?”.  As these are valid questions in some form of another, I don’t want to attempt to answer every potential question in a blog post (email me or message me, I’ll reply).  Anyway, come to find out when we moved to Florida, there are very limited services for the Autistic community, especially older age groups, in Palm Beach County – let alone even near Jupiter where we lived.  The local Public schools offered “services” but those are not specialized to meet Shane’s needs.  Our hands were tied there.  Brooke was unable to go to work as she had to be home with Shane (since not in school) and do her best to keep her sanity, and Shane’s too, during this time.  Our hands were tied there.  Getting additional support from the State of Florida was not happening and the waitlist for additional services could be years (we eventually found out).  Our hands were tied there.  Living in Palm Beach County, FL is financially challenging as a family of 5 with one income.  Thankfully, as you know, we were graciously given the opportunity to live at Brooke’s parents house.  We only hoped for this to be through the summer but it lasted longer when Shane didn’t get into school and Brooke couldn’t work and we could not afford to find a place of our own in the area.  So we stayed where we were and did our best to live out of each other’s way – all 7 of us in a 3 BR house.  It was tough.  We made it what we could.  We still laughed a lot.  We still had some great meals together.  We still were able to all shower and shave when we needed.  We still survived.

When we looked at the reasons to return to Minnesota the first thing was opportunity for Shane.  He would be able to return to his previous school where he did well.  We know he could go there until he turned 21.  Until that time we know we have to double down on planning a future for Shane outside of District 287 in Minnesota.  With Shane able to attend school in Minnesota eventually, that meant that Brooke would be able to find work again.  With Shane back in Minnesota we know the services and financial supports for his needs were in place and once we re-applied and updated his status (he’s technically an adult now) he would have more supports available to him.  We knew that Delaney would thrive again in school with so many of her closest friends at Orono.  We knew that Ryan could return to BLVD Kitchen and Bar or eventually transfer with Barnes and Noble where she worked in Florida.  And doing what she does so well… she could continue to be inspired to write (and get some stuff published).  I knew that I would have to find new work as well considering there were no job opportunities with 5.11 Tactical at the time in Minnesota to transfer to.  But the job outlook for someone with my experience was more open in Minnesota than in Florida… and we already knew the pay scale was better in Minnesota.

So there is the nutshell of reasoning behind the move and some of the motivations behind why we went to Florida to start with and why we eventually returned to Minnesota almost 7 months later.  Despite the stress and anxiety each of us has been through for various reasons – we are still together as a family.  We are back in Minnesota on our own terms on our own path this time and we will find ways to thrive and be successful – each of us.

Thank you and Happy New Year to you all!  Come back soon for another update (yes, I have another one in the works already).

Some days are good and others nowhere near good.  By “good” I mean there are no major tantrums, there are no problems or issues sleeping, the constant counting of days until “home” happen only a few times throughout the day, sleep is somewhat regular although he ends up in our bed at 2am anyway.  Those days can still be considered “good” days.  That’s about all we count on for Shane right now.  The change to Florida has been a big stresser for him as it has for all of us.  Being in a new house (although he’s visited here every year his whole life), not having any structure to each day and the everyday inability to communicate what he’s going through.  Bad days are ones where the tension, stress and anxiety are thick in the house.  Shane comes up to everyone in the house constantly to say “Hi” and expect you, in return, to say “Hi” as well and if not he gets mad.  Then, every screech and yell and outburst Shane makes in his bedroom (also his own man cave) comes out of frustration for something.  His appetite is even more diminished and limited than usual.  Shane will act out more often both verbally with protests of frustration and, physically, as he slams doors, hits walls and throws things with the occasional hitting or kicking of one of us.  His hand “stimming” (constant hand flapping, verbal repetition and moaning, pacing, etc) is usually non-stop.  These days are the hardest.  I hate these days; Brooke hates them and the girls do too.  We have to give Shane additional space, give in at times to certain requests (McDonald’s, golf cart rides, etc) and keep the environment as light and fresh as possible and focus on anything positive.  These days are tough though and they wear on all of us.  I can only imagine what it is doing to Shane.

I feel overwhelmingly guilty for putting Shane in this position now on top of other things he’s endured in his life.  And not having the resources to help him more is heartbreaking.  Not being able to provide more for Shane eats at me every moment of every day.  The guilt I feel also goes for Ryan and Delaney except they can voice concerns or challenges (when they really want to) and that helps to work through issues that arise as well as celebrate every success that comes their way.  It’s obviously different for Shane and his inability to communicate wants, needs and just converse in general.  We’ve hit a roadblock of sorts at the moment here in Florida.  For Shane we are still waiting for him to be selected in the next lottery at The Learning Academy at The Els Center of Excellence (being a charter school admittance is lottery based, regardless of need).  That, it seems, is going to take a bit longer than we initially expected, but at least he is on the list (again, keeping some positive vibes going).  On the home front, we are going to be in “limbo” (not the party game either) for a while longer now.  Our ability to move on to a new home for us has come to a halt and we will be living with my very gracious Mother and Father In-Law for the foreseeable future.  Yes, that’s right, 7 people in a 3 BR house!  But… we will manage.  I am still in awe of what Nanie and Boppy (Babo and Shirley) have done to help us in this process coming to Florida – in addition to so much more over the last 25 years!  Family helps out family and no expectations are needed – we just make it work.

Sounds like a sob story, doesn’t it?  It is.  And that’s not to say that this is being put out there for anyone else to sob or feel sorry for.  No way.  That’s for us to do as we wish.  And we do it often enough.  I guess what is behind me writing this is to say – “Hey, not everything is good in our house.  And not everything is bad”.  We put on the smiling happy faces for social media and that, truly, is not healthy.  We tell others “Yeah, things are going well.  We’re settling in great”.  However, there are circumstances beyond our control that make those statements untrue.  It is still our role to re-position our mindset and emotions to deal with the issues at hand and move forward.  My Dad would say “You have to play the hand you are dealt”… and we are, all of us are… and all of you are too.  Play it, go ALL IN every day and commit to every opportunity to make things better.  If not, you’ll sink and sinking just plain sucks and it is very tiring and will wear you down.

Most of you may know that this past week was the start of a new professional journey for me as I started at new job.  Yes, relocation/vacation is over and it’s back to real work.  Well as real as can be for now.  So pardon my delay in getting some new material up on the blog here but I hope you’ll continue to follow the updates and posts that do come.

After our crazy relocation here to Florida just over a month ago, I am happy to report (as many know already) that I have started my latest role with 5.11 Tactical as a Store Manager for a brand new store opening in West Palm Beach in mid-August.  After the decision was made to make our move after school ended for the kids in Minnesota, we discussed the options related to leaving my previous job with Carhartt or for me to stay in Minnesota until I could gain new work in Florida.  We decided that it was better to leave Carhartt to be closer to the job market in Florida and focus locally on finding new work.  Well, that decision was made back in April and not long after I came across a posting from 5.11 Tactical for a new Store Manager role needed for a new store opening in West Palm Beach, FL!  Could this really be?  You see, back in November and December I had talked with 5.11 Tactical about joining them in Minnesota.  So much so, in fact, that they extended an offer to me for a Store Manager role just before Christmas.  After some time thinking on it during the holiday and getting some very valuable feedback; I decided this particular opportunity and time was not right for me to leave my current role.  This was not the first time I had turned down an offer and probably won’t be my last, but it was definitely one of the toughest.  Considering where I was with work at Mall of America and just so crazy over-worked and tired I wanted out, period.  But really it wasn’t necessarily about being out of Carhartt as much as it was the retail “box” and MOA, which is a beast if you work there too long.  You see I was really after an opportunity outside of the “box”, as I have put it so much.  I’ve done this for many years – working retail in a store front – and I’ve done very well in many areas.  “Now is the time”, I was thinking, to make a move towards something that can help me grow professionally beyond the retail store.  After all the “thinking” and collaboration and feedback, I decided to stay with Carhartt.  5.11 Tactical was moving in a great direction and I had every reason to believe I could make an impact and grow but it just didn’t feel like the time was right.  And I made this decision, on my own after talking things through with Brooke and some of the people that I trust the most.  Well then things happened and we movd and as we were planning our move to Florida the opportunity comes up for a brand new 5.11 Tactical store.  It was fate, if even for a little while.  I made contact with the people I had talked with previously and moved forward with some phone conversations and it worked out that I could meet them in person in Florida during a quick drive and drop with the moving truck.

Considering the timing and all the unknown variables at the time of our move I knew that my job after we got to Florida was to keep looking for a job.  You never know, another opportunity may come up that is even better in many ways.  This brought back a lot of memories – finding a job.  In fact, my job was finding a job.  When we relocated from Delaware to Minnesota in 2008 neither Brooke or I had jobs.  It took several months for me to find one.  Yet, thankfully, Brooke landed a great job in April of 2009 with an insurance agent where she stayed right up until we left for Florida.  I, on the other hand, had challenges finding a job, let alone start a career over somehow.  I remember being constantly bombarded with questions – “Where are you looking?”  “Who are you talking to?”  “Are you following up?”  “How many resumes and applications?”  “How many interviews?”  “You need to get something soon”  And on and on it seemed.  And I, regretfully, caved to the pressure of taking a job with Comcast in their “Tech Support”.  Ugh, that was a sad experience and something to talk about another day.  Thankfully, a few months later a great opportunity came up with Bose again and I JUMPED on it.

Thinking back to that period in my life made me realize, again, that there are “jobs” out there for anyone and it will help pay some bills or get you out of the house or provide benefits for a family that truly needs that more than anything.  But the right one, and best one, will not always just be presented in your lap or like fate was when I connected with 5.11 Tactical for the second time.  There are times you will do things you don’t want to do when it comes to a “job”.  A career is the the job that is also a passion, a way of life and something you truly love to do.  Then you can see yourself doing it forever (relatively speaking).

For those younger people reading along here that have less experience in the working world, I have something to tell you:  There has been a mixed message said often: “Do what you want to do” or “Be who you want to be” or “Don’t let anything stand in your way” or “Don’t settle for less than you’re worth”.  And that type of message is inspiring and motivational but there is more to this statement that many people forget to pass on as well… “There will be times, more often than not, that there are things you will HAVE to do and they will not be what you want or what you like or what you planned for”.  Remember that.  Keep reaching for the stars, sure… but if you have to be the one that pumps the gas into the space ship – so be it!  So when it comes to the point that you HAVE to get a job… get a JOB, you can find something!  Get something to pay your bills, support yourself and your family and make an impact.  You will have time and opportunities ahead that will help you find greener pastures.

I’m excited and nervous for what lies ahead for me professionally.  Heck, for that matter I am nervous for what lies ahead for me personally too.  I know that there are things that I CAN control and things I CAN’T.  With this mindset as well as a very positive attitude, I’ll be able to take it all on.  Just as any of you can too.

There isn’t a joke in the title, I promise.  This big guy really does like cooking.  And honestly it’s not about eating the food but it’s more about creating something that I want others to enjoy.  Many people say that it’s an “art”.  I can understand that to a point.  Musicians make music for others to enjoy.  Painters and sculptors make beautiful pieces that are enjoyed by many.  But for the most part I’m not sure I can say that cooking is an art with the same reasoning behind it.  After all… once you make it… it gets eaten, right?  Well, hopefully.  So the finished product is short lived and does not last like a painting, or a song.  You could try to leave it out for more and more people to enjoy but I’m willing to bet it won’t last long one way or another.  And you can create it over and over but each endeavor ends up different.

I am not a “chef” by any means and I more or less “dabble” with my kitchen creations.  I’ve made more mistakes in the kitchen than I care to announce here and I’m sure my family would vouch for my “challenged creations” as they have been the ones that still choke down a new recipe here and there.  And speaking of recipes… when it comes to the things you know and know well… there is no such thing as a recipe.  Sure, you want to cook everything until it’s safe to eat.  Or you don’t want to overcook the vegetables until they are mushy.  And, Lord help me if I over-cook meat… especially a good steak.  But yes, it’s all been done before.  And I still keep coming back and cooking more!

Cooking for me is about the planning, preparation and having “me time” in the kitchen.  It all starts with WHAT we want for a meal.  This alone can either be a long debate or it can be simple when we are all in the same mood for something.  Take “Taco Night” as an example; we don’t eat tacos here so we never have taco night – that’s easy!  Well, we have 1 or 2 times but that was enough.  Or seafood:  I’m the only one in the family who likes any food that comes from the water.  So, like tacos, we never have seafood or fish in the house – that’s easy (SAD FACE)!  But then there are the nights we have chicken or pork or maybe we splurge on some good filets or ribeye… those are the nights we can battle out what else we want to have with them.  Does this happen in your house?  Maybe you or someone else speaks up and makes a decision on something for dinner and then all of a sudden everyone else wants to pony up their own opinion on what to have and how to cook it?  Am I the only one?  Probably not.  So here’s how we have resolved all of this at our house – I just cook.  If you want chicken – I’ll cook the chicken.  If it’s potatoes with it – I’ll take care of them.  But once the decision is made – it’s my way…. or as close to my way as I can actually make happen.  We have reduced the decision making time to allow for more time to cook.  I need more time to cook so that way I can have a cocktail or two to start off.  Oh, don’t tell me you don’t do it either!  “Oh look, this recipe calls for 1 cup of white wine.  I guess that means I’ll have some bourbon before I start then”.

The thing with cooking is that it has really become a passion for me.  I really do love my time in the kitchen.  I like researching recipes and trying to knock off things I see online (I’m cheap like that).  But it’s quiet time for me (sometimes).  I grew up in a family that cooked amazing meals for any and everyone and especially for large amounts of people.  My Mom and Dad cooked a lot and were great at it.  My brothers cook anything from anything and stay out of their way when it comes to cooking the meat!  My sister can make a great dinner… reservation, that is!  HA HA!  Actually, she’s good in the kitchen when she has time for it too.  I really think my parents learned cooking from their parents as well and I can now see how they learned to cook just from being in and around the kitchen.  My Dad can make anything… from anything (see where we get that from?).  If we didn’t have all the needed parts for a recipe – he made it work and we never knew different.  It was this trait that caught on for everyone in my family I think – being able to make something from memory.  It’s crazy to think how many recipes are in my Aunt Mary’s head because she was always making something when we were there.  Baking this, cooking that, etc.  Really, everyone in my family seems to have a knack for cooking and cooking great things.  Brooke has become very used to me being in the kitchen.  But when I work long hours or when I’m away for work, she picks up the utensils and makes the meals happen consistently – and she’s damn good now too!  I hope this is something that is hereditary and I can pass it down to my kids.  My girls are somewhat interested in cooking – to the point that they ask me to make something.  But honestly, they both have the ability to take on a kitchen when needed.  They could work on cleaning up first but that’s a different story for a different time.  In fact, recently when were were settling in here in Florida, Ryan looked up some recipes and wanted to tackle making dinner one night.  I selflessly relented and turned the spatula over to her (for one night).  But Ryan wanted to make Spaghetti Carbonara… and she did it amazingly well!  I was quite impressed and still waiting for her to do it again.  But that to me was a sign that she can handle the kitchen pretty well and with a little more guidance and learning she can do even more.  Check out the photo below.  Yes, it’s all mixed up and we aren’t here to make it all pretty but, this was very good!

Delaney has dabbled with me in the kitchen and helps make things when she’s up for helping.  She is really good at making “Nanie’s” Ritz Cracker Chicken which is a family favorite and everyone should try it out.  I’ll post the recipe below… let me know what you think of it!  Then we have Shane.  He’s not a chef – yet.  But he loves to help prepare the ingredients and mix things if needed.  That is, until he’s bored and needs to get back to his video watching in his room.  But he, just like Delaney and Ryan, will come help if asked but it’s limited.  Maybe with enough exposure in the kitchen he can be my right-hand-man in the kitchen one day!  For him, cooking is either getting McDonald’s out of the bag or nearly charring the frozen chicken nuggets for his dinner.

While writing this tonight I have been waiting on a Pork Loin Roast to finish.  It turned out well and allowed me a little over an hour to write to you all about a passion of mine.  Thank you for your time.  It’s time to go eat now.  I’m looking forward to sharing more food stories from the Whitney Kitchen in the future.

As I promised above, here is the recipe for the Ritz Cracker Chicken.  I’ve learned to make small changes to it over the years but it is really amazing and easy to make.  Partner it with some steamed spinach or green beans (OK, maybe a salad) and go light on a starch with this meal if you can so maybe some wild rice or roasted red potatoes.

RITZ CRACKER CHICKEN (No, Nabisco is not paying me to use this and please don’t tell them so they don’t come sue me for using their brand!)

Preheat Oven to 350 degrees

4 – Boneless Chicken Breasts (I usually filet mine into cutlets)

2 Cups Crushed Ritz Crackers (1-2 sleeves depending on how much chicken)

1 Cup Grated Parmesan (OK, maybe a bit more than that)

1 TBSP Minced Garlic (I just get it in the jar)

1 TSP Salt (Or less because the crackers have enough salt usually)

1 TSP Pepper

1 Cup Light Olive Oil (You can also use melted butter instead for a richer taste)

Combine cracker crumbs, parmesan cheese, garlic, salt and pepper together until mixed well.  Dip chicken (1 at a time) in oil (or butter) and coat evenly.  Then dredge in cracker mix and cover completely and place on baking sheet.  Repeat for all chicken pieces.  Take some of remaining cracker mix and sprinkle over chicken to cover any bare spots (or just because you want more!).  For whole breasts cook at 350 for 45-60 minutes.  For cutlets cook at 350 for 25-30 minutes.  The cracker mix will become deep golden brown… and a delicious aroma will come from your oven! Enjoy!

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