Being a Dad…the best role I've ever had.

When we began the process for getting my step-son evaluated for Autism Spectrum Disorder, I did not know much about it. I still don’t, but I do know more that I did.  I have also changed my perception of people with ASD.  My first hand experience with my step-son has been all over the map, but mostly a huge, positive one. That, for several years, I just thought he was spoiled speaks volumes about his condition. If you did not know, you would think he was ‘normal’, maybe a bit mature, for his age.

However, thinking back about some of his quirks, outbursts and other traits, I see that in my other two kids.  My 18 year old exhibited many, but not most.  My three year old, again, shows many of the characteristics but not all.  And, then there is myself.  I fit the bill on many of the characteristics but, again, not all. And, this begs the question I posed in an earlier post: how many have either been misdiagnosed or, worse, not at all but should be?

For example, Xander, my three year old, is prone to outbursts, much like Preston did.  He does not ‘melt down’ as much or to the same degree as Preston once did, but, nonetheless, Xander still does.  He also is beginning to show some of the same texture issues that Preston does.  Xander tends to get fixated on one thing for days or weeks at a time.  However, the one big sign that Xander exhibits but Preston does not: Xander has a very vivid imagination.  He can take anything make it into a toy and play for quite a while.  You can hear him acting out things.  He also bursts into song, exhibits empathy and will engage total strangers.  Preston does none of this.

And then there is myself.  I can be rather rigid in my thinking.  And, though I thoroughly enjoy being around others and participating in conversation, I don’t really care much for people in general.  I do not get scared or anxious in crowds, but it is uncomfortable at times.  Sometimes, I find myself not caring when I should and also tend to gravitate to one, maybe two people when in a group.  Generally, when she is with me, that person is my wife.  She is my comfort zone and I tend not to leave the ‘zone.’

As far as imagination goes, I have tons of that.  But, what’s odd is that I cannot always ‘see’ what’s in my head.  I know what things look like, but I often cannot ‘see’ the object in my head.  I found out, via a friend, that this is an actual condition called aphantasic.  You, literally, are ‘brain blind’ in that you cannot imagine or picture anything in your head. I’m not quite like that, I can ‘see’ dim images, but no detail and lack of color.  I would make an awful witness. I am terrible with names and faces for this reason.

So, what does all of this mean? Well, I don’t quite know except that the brain is a very delicate and complicated device.  I don’t think Xander is autistic, but, honestly, I think it is too soon to really know.  I think he is more the three year old than an autistic three year old.  ADHD, maybe. 

Since getting the diagnosis, I see Preston more as a child that needs our help, needs my help, more than seeing him as a spoiled child (which, like most children, he is to a degree.)  Knowing WHY he does what does makes it much easier for me to understand and cope just as he has to.  It also helps me be me…see, I share many of his quirks too.  I always denied it, my wife loves to point it out, but, I think she is on to something.  Who knows, maybe I have Aspergers (which, apparently, is no longer discussed.) Whatever the case, I have learned that the world doesn’t give a darn about me and that was one of the biggest eye opening moments of my life. It does not revolve around me or anyone else.  Preston will figure this out too.

As odd as it sounds, I am looking forward to embarking on this journey with him.  And if Xander does turn out to have the same thing, I look forward to walking with him as well.

Love and patience, my friends.

I recently wrote about my step son’s autism diagnosis.  I want to expound a bit on that post.  I thought about just editing it, but decided to write a new post, I don’t want to confuse anyone who already read it and I’d like to say more.

Early on, right after my wife had moved in with me, I thought my step son was spoiled and that he got by with a lot.  And, that is true:  my wife will tell you that, yes, he was spoiled and he did get by with a few things. There are reasons for that and I will get into that in a bit.  I also thought ‘well, he isn’t acting that much different than an ‘x’ year old (supply any number for ‘x’.)  Well, yeah, he was.  See, my problem has more to do with MY perception of how a child SHOULD be.  It is different from yours, I am sure.  We tend to compare things with that we know.  For example, I tend to use my first son as a reference, even though I know he was unusual. Unusual in that he was quiet, liked to play on his own, etc.  So, that was my reference point.  Add to that, my mother was a foster parent and she also baby sat children.  So, having been around children my entire life, I thought I knew what I was seeing.  And, yes, some of that behavior was normal and very appropriate for his age. Most, though, was not. And that is what I missed.

Now, when he was younger, he had many, many sensory issues and, as such, was unable to play outside.  The dirt, grass, rain, snow…most things that we would take for granted, he had major problems with…especially sand and snow.  So, since he could not play outside, he was allowed to throw things inside.  Let me tell you, I was appalled the first time I saw it and went off the deep end.  All I could see was my expensive gear getting broken, broken glass everywhere and a lot of money to replace the broken stuff.  Even after the reason he did that was explained to me, I still had (and still do) had issues with throwing balls-or anything-in the house.  Yes, it is still forbidden.  We had to figure out how to get him to play outside and understand that, here, it was not allowed to throw things in the house. 

As time went on, though, it became less of an issue as he learned to play outside and, now, he loves it—when he does not want to play video games, this is.

Once I knew WHY he did what did and WHY he ‘got by with it’, I adjusted and adapted.  Rules are rules, even for him.  The key is to figure out how to implement them in a way to accommodate his issues.  So, we started out by allowing it in one large room of the house, where there were no expensive things to break and we limited it to only softer balls. It was also allowed in the hall up to the room.  This worked well.

The sensory thing was a big indicator of a problem.  Most of us have some kind of sensory intolerance, be it loud noises, the feel of a fabric, the texture of a food. We all have experienced this at some point in our lives. For some, though, there’s a multitude of issues and my step son had a bunch.  From food textures (he is the ONLY kid I know who cannot tolerate mashed potatoes, as soon as they touch his tongue, the gag reflex kicks in and…boom!  Out go the potatoes.  He also does not like certain fabrics touching his skin.  Sand used to freak him out.  Anything with a non-smooth texture bothered him.  His socks being ‘twisted’. 

Some of these I understood. The sock thing? Over my head. I just could not fathom that idea that he could feel that or that it felt wrong. I just couldn’t.  I would often just brush it off.  And, let me tell you, that is something you SHOULD NOT DO. Period. NEVER ignore it. NEVER think ‘well, that’s just crap’. Never. Don’t do it.  It means something to those who experience it and should not be dismissed. Ever.  Help them with fixing it.  If it takes a few minutes, deal with the delay yourself, don’t put it on them.  It will just make it worse.  I know first hand.  Little dude, I am so sorry for that.

For children like my step son, there is a time for ‘the lesson’ and a time for just letting them do it their way.  If there are two doors that go to the same place and they pick the right door instead of the one you were going to use, just suck it up and go through the door they want.  That is a small battle you do not need to win.

The battles you DO want to win are the ones that teach them something.  The ones that keep them safe.  The ‘lesson’. 

So, what’s the ‘lesson’?  Well, that’s when they do something they think is the right way, but you know it isn’t.  One that will get them laughed at or scorned later in life in a job, school or other social setting.

And, that’s the key: social setting.  Children like Preston, my step son–my son–lack many social skills, including when to be polite, when to take feelings into account, when to back off.  He’s got the basics down, he knows how to introduce himself and he will participate in things, but he will also tell you if he thinks something is stupid, not thinking about that would affect the others.  That is a foreign concept. And that is where you give ‘the lesson’.  I’m not going to go into much about that for now.  I am going to write about that in another post.

Thinking back, there were many signs I just could not see due to my own preconceptions.  This makes me wonder how many children out there need help but, likely, won’t get it because of someone like me.  Fortunately, Preston has a great support system in my wife, his father, his grandparents, brother and myself.  Recognizing that the melt downs — NOT the other stuff — I realized that, yeah, something was off and, after several years, we finally know why.

What I am trying to say, is that you need to have an open mind and throw out any ideas you have about how children SHOULD be.  It’s tough to do,  and, at times, you will regress back into that comfort zone, but, don’t do it. 

Remember, it is about them, not you.  They need your help more than you need for them to be perfect.

We have a diagnosis

When I remarried, I gained something really cool:  another son.  Now 8, he is one cool little kid.  But, we’ve known for years that something wasn’t quite right about him.  He is not shy, he’ll start playing with any child who will talk to him.  He is friendly enough, and is very smart.  But, he was prone to ‘melting down’ quite a bit, over little things.  If you moved something that he thought should not be moved, it would cause an episode.  If he did not get his way, he melted down.  You get the idea.

Not all of the melt downs were bad, some just involved a lot of crying. Others were physical.  It was a crap shoot.

Oddly enough, he did not always melt down.  Sometimes, he just accepted it and moved on—like a ‘normal’ child may do.  From my point of view, he was just acting like a spoiled child.  See, he had been allowed a lot of freedom, like jumping on furniture or throwing balls in the house, things I did not allow.  But, the melt downs would happen outside the house as well.  Sometimes it was as small as not getting a piece of candy or we walked through a different door than the he wanted.  This made me wonder and I, finally, began to think my wife was right…this was not normal.

As he grew older, the melt downs diminished. He started school and, at first, everything seemed to be OK.

They weren’t. We were noticing things like his inability to listen to others.  His lack of empathy.  A growing self-awareness and self-centeredness.  He was, at times, not very grateful at receiving gifts. 

Then, the melt downs returned.  In second grade, he had to be removed from his class (a fact that we did not know until much later) because of a melt down.  He came home one day, all out of sorts, because a sign had been left up that told the class they were going outside when, in fact, weather did not allow it. 

These were all signs that he has a problem, but doctors did not want to label him.

Well, after a lot of grief and perseverance, we finally have a diagnosis: Autism.  Fortunately, it is of the type that he will be able to function and have a somewhat normal life, but will need a lot of help. 

Help from my wife and I, help from his father and his wife, the school, families and friends.  He is a great kid and I am hopeful that he will learn to deal with his issues, but, more importantly, we, as his parents, learn to deal with them so we can teach and help him. He is one awesome little boy.

WP_20160416_09_50_39_Raw_LIAs a fifty year old father of three boys, I think I have a pretty good understanding of this dad thing.  My first son is now 18 years old.  My middle son is 8 and my youngest is now 3.  That’s a big range in ages and it makes me, for the most part, young.  Oh, my body says otherwise, but, mentally, I feel pretty young.  Maybe it is all of the cartoon watching or the playing with toys designed for  five year old or a combination of all of that. Whatever it is, I like it. I get to play with toys and no one thinks it is odd. I can watch Spongebob Squarepants and laugh at it.  Yeah, I can do all of that and it’s fine.

Perhaps the best thing is just spending time with them, collectively and individually.  So, it was a special occasion when I got to take a road trip with my 18 year old, go to an amusement park three hundred miles from home to ride one of the tallest rollercoasters in the country and then go back home the next day.  Long drive, yes, worth it? Oh yeah.

See, this was something that we had planned to do for years, not necessarily to this particular park, but the road trip and amusement park visit was.  So, now, we are going to take a summer long rollercoaster trip.  Not all at once, but, as time allows. We made the first leg, to wonderful Carowinds theme park in Charlotte, North Carolina.

WP_20160416_12_03_56_Moment(2)We started talking about doing this shortly after his mother passed away.  We did an abbreviated trip then, going to Carowinds, our two parks in Virginia, a nasty Six Flags park, just north of DC and to Ocean City, Maryland (a wonderful little beach town.)  But, we had company then, his cousin went along. Now, though, it is just us.

The drive down to Charlotte from Richmond was long but, fortunately, uneventful…no breakdowns, tickets, sickness, etc.  We talked.  We talked a lot.  Told stories, shared political views, talked about previous trips and vacation, school and more.  I had a great time.

WP_20160416_10_00_42_Raw_LIWhile we planned to stay the weekend, we cut it short by a day.  He wasn’t feeling well and we decided to come home early. That was fine. We did all we had wanted to do in the park anyway…rode the Intimidator, a rollercoaster named and themed after the race car legend, Dale Earnhardt.  We road Flightdeck, a jet fighter themed coasted originally themed for the movie ‘Top Gun’.  It was fast…and gave me a headache.  But, the ultimate thrill there…the 325 foot tall, 6600 ft long tracked behemoth called Fury 325.  It was fast, tall and so smooth. Not jerky and did not do anything more than make me a tad queezy as I had eaten very greasy pizza beforehand. 

As awesome as the coasters were, however, nothing was more awesome than just spending time with my son.  He was upset over having to leave early. I told him it was fine.  As I told him, it wasn’t the destination, it was the journey.  And an awesome journey it was.  I am looking forward to the next trip.

The Not-So Affordable Care Act

Raising one child is difficult and expensive. Raising three? Well, it’s not quite as hard as one may thing, but it is more difficult than raising one or two. The cost, however, is far greater.  Now, I don’t want to sound cheap or like I am complaining, but I am constantly amazed at how much it costs for certain things, like health care.

Just three years ago, I was employed at a major utility and had really good health insurance. I remember complaining that my premium was going up…a whole hundred dollars. A MONTH.  It was going to cost me about four hundred dollars a month for complete medical coverage for ALL of my family, including my lovely wife.  Granted, that coverage was probably more than most needed, but I have two children (well, one is 18 now) that have weak immune systems and sick quite a bit.

Well, fast forward three years.

I no longer work for that company as they ‘eliminated the position’ that I held.  My insurance lasted about three months after my official end of service date. Then, the worst happened. The Affordable Care Act was in effect and I had to use the Healthcare.gov web site and buy insurance. 

Let me tell you, that was not a pleasant experience.  Not at all. There is nothing good about that site and I think they forgot what ‘affordable’ means.  The cheapest insurance, for the family, was about what I paid at the former place of employment. The difference? It had a high out of pocket and deductible.  The deductible was something like five thousand dollars and the out of pocket was really high.  And, it was lacking in coverage PLUS…new doctors since, contrary to what we were told, our then current doctors did not participate.I ended paying nearly seven hundred dollars, with a two thousand dollar deductible.  Now, when you are stretched thin already, how is this affordable?

Today, I have a new job but am currently considered a temp worker (my full time job starts in a few months) so I am not entitled to the temp agency benefits. I have some, but…well, they aren’t great.  For example, the ‘medical’ insurance is the bare minimum they can get under the ACA. It ONLY covers preventive care, not sick visits. AND…my wife is not eligible.  She must go through Healthcare.gov.  So, not only will she pay a lot more, there is still that high deductible.  Unfortunately, we have to go this way as it is the law. Albeit a broken law that just does not work.

Our lawmakers lied to us.  This Affordable Care Act is anything but affordable.

A Night Out With the Kids

Recently, we had a sleep over for my step son. It was just a neighbor kid and my stepson, but your would have thought we had a whole boy scout troop as it was bloody expensive.  A movie and then dinner at a Stevie B’s (like Cici’s Pizza) was just nuts, cost wise. Now, mind you, I have not been to a movie for a while and just forgot about how much they charge for things.  The movie was just over thirty dollars. I actually don’t mind the high cost of the tickets as the theater experience is still worth paying for, but just wait till I get my home theater. The concessions, though…OH MY.  Popcorn, one very large soda, two boxes of candy and two slurpee like frozen drinks was 33 dollars. Dinner, which also included my oldest son, was also around the 35 dollar mark-which isn’t all that bad, for five people.  So, this little outing, for two kids, my wife and myself was nearly a hundred bucks.  Seriously.  How in the world are parents on an even tighter budget supposed to do something like this? It’s no wonder Netflix and RedBox are so bloody popular. I have to wonder how others, who may not be as fortunate, do this. I can’t imagine how a parent who is making thirty grand a year and has two or more children does it. This has gotten me to think about alternative ways to entertain, have fun and enjoy the kids having a great time. Look for more later, but I will start with dinner, below. Read on.

The only reasonable thing we did was dinner at Stevie B’s.  In fact, it is even cheaper if you buy the regular size pies and take them home: $4.95 each and they actually taste fairly decent, for cheap pizza. Get a couple of them, a two liter of soda and rend a movie for under $20 bucks. Not bad.

Of course, it was all made worth it when the the neighbor kid looks at us, cute glasses and wide grin, and says ‘this is the BEST night ever!’ Well, that hundred dollars suddenly seemed inconsequential.  It got even better when my step son concurred, with an equally big grin. Yep, that’s what it is about and that makes it easier to swallow an otherwise very bitter pill.

DSC_5358June.  The start of the summer season, vacations starting up, school ending and graduations.  Among the events that have taken place, for me, in June…my oldest son graduating from high school and turning 18.

I thought the graduation was going to be tough for me. I was very proud of him.  Watching him walk across the stage, getting his diploma and remembering a time when we sure if it would ever happen.  When he was a child, Chase had an immune system deficiency and took several meds and received monthly, then weekly infusions. We never knew what the long term effects of the medication he took and the blood infusions he received would do. There was even concern on how it would all affect his cognitive ability.  Well, I am happy to report that it all kept him alive as well as not doing anything to hamper is learning and mental growth.

He has turned out to be a fine young man.

Fine young man. 

Wow.

It seems to me that just a few short years ago he was five and just starting school. But, I woke up one day and he’s 15 and in high school.  How in hell did that happen?

Now, he’s 18.  Out of school, driving and has a job.  Soon, he’ll have two jobs as he will be a ‘scare actor’  at a local theme park for the Halloween season.  My otherwise quiet son will be scaring the pants off of grown people and kids alike.

He’s good at it too as we saw him in action last season.

Over the years, I’ve watched him develop and grow. Often, telling him he needed to stop that nonsense and be my little boy forever.  Of course, that didn’t happen.  Well, the stop growing part, anyway. 

I think back at his many goals…like being tall enough to reach the light switch on his own.  Being able to read just enough so he could play Rollercoaster Tycoon while daddy was at work (I used to put him on my knee and play the game with him. We built many, many amusement parks together.) Getting tall enough to ride the Tomb Raider.  Being able to ride to ride the Volcano. Wishing he was in high school. Wishing he was out of school, etc.

And watching the awe and amazement coming from him when he discovered something new as well as having those goals met.  Watching his excitement when he was able to reach the light switch, play the games, ride the rollercoasters and tomb raider.  The pride, walking across the stage, in getting his diploma.  Even today, he still gets excited. Not as much, perhaps, as he used to, but he does. (Seeing the joy on his face when we went back to Disney World was just as cool as it was the first time, some 12 years ago.)

Time doesn’t stop and Chase will, eventually, move on and, hopefully, find out how awesome it is to be Dad. And, it has been awesome. I wouldn’t trade it for anything.

And, I get to do it again.

I still remember the first movie I took my oldest son to see, Elmo in Grouchland. Now, this was back when Elmo was still a big thing and going to the movies didn’t cost two arms and legs.  Chase was probably three when we went to the movie. He was very excited and, frankly, so was I. Not see the movie, but to take him to his first movie. 

I put him in his safety seat in the back of my car and we proceed to the theater. This particular theater was about ten miles from my home, not a huge distance, but it was going to take a few minutes to get there. I knew Chase was excited as he talked incessantly.  That was fine, I loved listening to him talk. His sweet voice was cute and his use of words just astonished me, after all, he WAS only three.

As we pull into the parking lot, he sees how big the building was and he got worried.

“Daddy, what if I woose you?”

“Don’t worry, Chase, you aren’t going to lose me.”

We go in and I purchase the tickets and get us some snacks. At that point in his life, Chase did not like candy. I know, I never understood, but was glad he did not. No, instead, he wanted a hot dog and juice.  I got it for him and for myself, a small popcorn and soda.  We go to our seats and, then…

…the lights went down. Well, that scared the crap out of Chase. So much that he nearly threw his hot dog!  I reassured him that all was well and that the movie was about to start. But, before I could warn him that the picture was going to be big…

the damned music started and the previews came on screen.

He was almost in tears. 

I calmed him down, let him know it was normal and that the picture was supposed to be that big. He grew to like it.

After several previews, the movie started.

He finished the hot dog and sucked down the juice.  Laughing and giggling, he seemed to really like the movie.

And, then…IT happened.

Nothing prepared me for this. NOTHING.  It was just awful.  And, for  a three year old, I can see why he reacted the way did.  This was so bad, we had to leave the movie.

We were only about 45 minutes into the film.

So, what happened? What was so awful? What scared him so bad?

MANDY PATINKIN.

Yep.  The actor. He played the villain in the film and he looked pretty damned scary.  His makeup was so good, Chase could not look at him.  Nothing I said could convince him that it just a picture on the screen and not real. Nope, nothing.

So, we left.

I managed to get him calm and took him for ice cream and then we went home. 

Later that evening, he walks into my office at home and climbs up on my lap.  Gives me a big hug and proceeds to let me know that, even though he got really scared, he still had fun with me. He gave me a big hug.

At that moment, I knew this Dad thing was going be awesome.  The love and utter contentment I felt, at that moment, made everything else secondary. He was the center of my world.  Making him feel that way, even as scared as he was, that he could still feel safe and have fun, well, that’s what it is all about. 

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