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

Posts tagged ‘melt downs’

Remember, context is king

Sometimes, it is difficult to remember how well you really have it when things are seemingly going wrong.  Just today, I found out that a co-worker of mine may not be with us for much longer.  I cannot imagine how this person must feel, knowing that, in a matter of months, they may not be here. 

So, when I heard that my nine year old was having a difficult day, I thought-initially-boy, he doesn’t know how great his life really is.

That thought, though, only lasted a few moment…until I heard him on the phone. See, while Preston is not eaten up with cancer, in his mind, at that moment, he may as well be.  In my talks with him, and from reading the blog posts of others who are also ‘on the spectrum’, they describe the same thing: the world is, basically, ending for them.

With Preston, getting him calm is paramount and THEN finding out what put him over the edge. It is a delicate and very fine line and, once in a while, we break it and things can get much worse before it gets better.

Today seems to be a little different.  I wasn’t home to help him cope and couldn’t really handle it on the phone, so he did the best he could.

When I got home, he was fine. The house was in one piece and his brother was still kicking.  All in all, a great outcome.

In talking with him about his bad day, I realized that it isn’t just what happens in the same day, but it could also be from the previous day.  Last night, we had Stevi B’s pizza, Sweet Frog and a short cooling down period before bedtime. A lot was crammed into one evening. He also has not had his ‘daddy time’ as he was sick during the time his father would normally have picked him up.

It is the little things like can add up to a major event and sometimes we forget that. 

And, context is key.  Something I need to keep in mind.  Here I was, Concerned and upset over my co-worker’s condition, dismissing what my step son was going through. But, in Preston’s mind, he may as well have been that co-worker.

While I am glad it was good out come for a melt down day, I am heartbroken over my friend..

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The Nightly Talk

As a parent to a child who has been deemed to be ‘on the spectrum’, things could get a bit tense at times.  Those ‘times’ are much less frequent they used to be and we are better equipped to handle them than we were just a couple of years ago. While labels are often hurtful or carry a ton of baggage, Autistic doesn’t have to be such a label.

My step son is proud of himself and he should be.  He is quite the accomplished young man, at the ripe old age of nine.  Indeed, he knows more, about many things, than many ‘normal’ adults I know. This can be as much of a problem as it is a plus.  The problem is that (and this is something I think most people in general all share) he honestly believes he is right and it can quite a shock when he realizes he was wrong.

One such incident led to what is now a nightly occurrence for us: nightly talks for us. On the night in question, Preston was already out of sorts. He had had a long, busy day and his wonderful brain was in overdrive. We were discussing something and he told me something that was not right.  So I explained that he misunderstood and, well, it was meltdown city. 

Fortunately, I had gotten to know how to deal with him and was able to calm him down. I sat with him for about an hour, talking about funny things we had done and assured him that I was not upset with him and that we all loved him very much.  He thanked me and told me that the talk helped him calm down.  He gave me a big hug and went right to sleep.

The next night, was easier.  He had a busy day, and, this time, when said something that wasn’t quite right, I said ‘well, I’m not sure about that, but will check it out and we will talk about it tomorrow.’  He then asked me to talk to him for a few minutes, that it might help him to calm down.  Sure enough, it did.  This was many months ago, I’ve lost track of when we started, but it has been a while.

Funny thing happened, though.  I got to know him a bit better.  We often have these really deep or very high level discussions about things as varied as cars to black holes in space. He loves space, science and pretty much anything technical.  Did I mention he is only nine years old (as of this writing)?  I also realized that this kid, who is not my biological child, is very much like me.  We share a lot of common interests and also have many of the same mannerisms.  I also realized that he is very much a nine year old BOY.  And, as a boy, he finds ‘boy things’ funny. Like burps, farts and other bodily sounds.  Yes, I know girls do too, so don’t get wonky on me.

As he is only nine and does ‘boy things’, we must keep that in mind when he acts up.  How much of it is being a kid and how much is because of the way he is wired.  It is a fine line, to be sure.  Sometimes, we get it right, sometimes we don’t.

This is as much an education for him as it is for us.  He lets us know, most of the time, what his mind is doing.  And…likewise, he uses that to his advantage. He is, after all, a very intelligent kid.

Back to the nightly talks.

Well, before we get back to Preston, let me share another side effect: my youngest son also wants me to talk to him at bedtime as well.  So, I talk a few minutes with him-usually about when I ‘was a kid.’  He loves it, but not every night.  That’s OK, I spend a lot of time on the weekends with him.  We talk a lot.

These talks, often times lasting thirty minutes or more, have become something I look forward to, even when I have something else I need or want to do. I miss them on the weekend as Preston spends that time with father.

I always start them out by asking how his day was.  Even though I often get the same answer, that’s OK.  I’d rather him repeat himself than not tell me anything. I also want him to know that I am, in fact, interested in what he does.  He is beginning to open up more and more.  I also have a couple of things I repeat every time, including a fake misunderstanding of Spongebob Squarepants.  I integrate that into a seemingly unconnected conversation…

“So, I saw this car today with a cute little bumper sticker. It was this yellow, boxy thing with pants and holes” He will look at me, smile and shout “SPONGEBOB!” to which I reply “oh, you’ve seen it!?”  It gets him smiling and makes him a bit more responsive. But, I think it is time to retire it and move on to something else. He got irritated with it the last time I did it.  He asked ‘why do you DO THAT!?’  I blame it on being old. It made him giggle.

Sometimes, though, I forget who I am talking to and say something that upsets him, like talking about sickness or something that has happened in the world. This usually begins with him asking about something related.  I can tell when he is starting to get upset and I quickly change the subject.  But…unfortunately, by that point, he is processing what was said. He may not mention it the next day or for days, but he will bring it up again.  Sometimes, he tries to rationalize it himself.  He does a great job with that, sound reasoning and conclusion…even when it is not right.

He looks at things very differently than I do.  It is refreshing and, to be honest, I would not have him any other way.  I hate what his mind goes through during a meltdown or when he begins to get upset, but, still, he is who he is because of the way he is wired and that’s what is important to remember.  I love that kid.

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.

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