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

Archive for April, 2016

We have a diagnosis…followup

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.

The Road Trip, part 1

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.

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