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

Archive for May, 2016

Dealing with texture issues

We all, from time to time, have problems with touch or taste and certain textures. It is, I am told, a normal thing and few people don’t have any at all.  Very few.  However, those with certain disorders or conditions or what ever you want to call them, have major issues with texture. Those on the Autism Spectrum can have severe texture issues. How they cope varies.

My step son, Preston, has quite a few of them, primarily taste.  He can eat yogurt, for example, but cannot eat yogurt with fruit chunks.  However, he can eat a granola bar with no problem.

This blew my mind.  I’ve had as hard a time understanding this, as he does eating that chunky yogurt or mashed potatoes. 

Finally, though, I just asked him what the difference was…and, he told me. 

It is mostly due, I believe, to his rigid thinking process.  Preston is very literal: if he is told an item is perfectly flat, then that item CANNOT have any hills or valleys. If it does, he cannot deal with it.  It is his rigid thinking process.  That an item may have imperfections is foreign to him.

That same thinking applies to food. 

Yogurt is SUPPOSED to be smooth.  Not chunky, dammit.  The notion that it has something that is not blended into the smooth yogurt is something he does not understand.  We talked, at length, about this.  Almost too much.  I explained, several times, that it was ok and normal for yogurt to not be perfectly smooth. It can, in fact, have chunks of stuff.  He could not wrap his head around it.  In fact, he began to get a little upset so I dropped it.  I did ask him if it something we, the two of us, could work on and he agreed. I think he WANTS to eat more types of food, like the chunky yogurt, but his brain just won’t let him. 

I’m still having a difficult time understanding it, even though I now know why.  My rigid thinking is preventing full understanding just as his does the eating. I’m working on it. He is going to help me and, hopefully, I am going to help him.

If you have a relative who cannot eat a jelly donut because of the jelly filling or can’t eat certain types of cereal, don’t mock them.  Remember it just might be their brain  telling them it is wrong.  It is a very intense feeling…it can be so intense, it makes them physically sick. Preston got that way with mashed potatoes.  I didn’t get it until recently, that it was his brain and him not being stubborn.  You don’t want to make them feel bad just because of the way their brain is wired.  Put yourself in their shoes.  Doesn’t feel good, does it?

No.  It does not.

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Dealing with the meltdown

For the last couple of years, it seemed that Preston’s loss of temper had subsided.  In the past, it would not take much to set him off. Indeed, moving a book from one side of a table to the other would be enough to cause him to meltdown.  Generally, though, when he was like that, it might also mean he was getting sick.  His outbursts were often tied to his health.  I don’t know if that is an Autism trait or not, but it was certainly his.

As he got older, he learned to deal with things a lot better. With coaching from us as well as an intolerance for his outbursts, he has learned to cope with the situations that cause him so much angst.  I say intolerance because he had begun to get somewhat violent.  And, he is a strong child.  The fear of him hurting himself, one of the other kids or even us led us to deal with it a bit more harshly than before.  He knows his outbursts will get him punished, either loss of electronics, no friends coming over to play or some other appropriate form of punishment.  While this may seem over arching for a child with his issues, it has, nonetheless, helped him with boundaries. And, he definitely needs boundaries. More on that in a bit.

He is a second grader now and has matured a great deal.  We thought those tantrums were about done.

They aren’t.

Lately, he has regressed back to the tantrums.

Like today.

My wife signed the family up for the local YMCA.  So, she takes the three year old and Preston. My 18 year old followed later.  While at the Y, Preston and Xander were in the big kids and little kids areas. Xander played and had a good time.  Preston had a good time as well, until…

…he wanted to do the rock climb wall, which was closed.

Oh boy.

Preston misunderstood what my wife had said about it and took her comment as a hard fast promise that he could climb the wall.  The Y, however, said otherwise.  Preston melted down.  This wasn’t just a melt down for a few minutes. Oh no. It went on for quite some time.  She brought him home this way. He refused to get out of the car. She called me to help.

So, I go out to help him. Find out what happened, that sort of thing.

One of the things I learned about him, early on, is that he needs a lot of physical connection while he is this way, either holding him down, hugging him or simply sitting close to him with an arm around him. It’s a reassurance, I think, that he is loved.  He’s never said that, but I think that is what he believes. Any way, I sit on the edge of the car seat and hug him. He almost immediately calms, but not all the way. 

I could not understand him, so I had him calm down some more.  I hugged and had him squeeze my hands.  That usually distracts him and I make a dumb comment about it and he usually laughs.

Not tonight.

So, I resort to Dad and tell him he needed to suck it up and tell me what was wrong.  The way I said that (and not with those words, but something close—and clean) must have struck him as funny because he half smiled, settled down and told me about the wall.

I reassured him that Mommy would not lie and that she did not know that the wall was closed.  And, that sometimes, things he is told are just wrong.  I shared a short story about an experience I had (he seems to like that) and then suggested that we go inside for some good old ice cream. That always makes me feel better. He agreed.  I told him I would not talk about this incident anymore tonight, but we would discuss it again.  He seemed to get better after that.

The thing with Preston and situations like this is that he is quite literal.  If I say ‘I am going to jump down your throat and kick your liver out’ he will sit there and try to figure out how I would really do that. I had to explain that it was just a saying…a joke…nothing serious, because, after all, I am far too big.  He understands that, but the original statement was over his head. But, when his mom said he could do that wall if it were available was interpreted by him as ‘you can do that wall’.  The rest was lost to him.  And that is his biggest problem now:  trying to figure out what he should take as fact and what he can ignore.  He often chooses to ignore and that is just as bad.

A long time ago, we started to set boundaries for him.  No more playing in our bedroom. He has his own PLUS a room downstairs he can play in.  No more using our bathroom in our bedroom: there is one in the hall for him to use.  Things like that.  Why? Well, as he is both literal AND a rule follower, this was the start of his education on how to act socially AND deal with a teacher in school.  Plus, our bedroom is just that: OURS.  It is not his, nor anyone else’s in the house. This also taught him that other bedrooms were also off limits.  It was an adjustment, but came through very well. Unfortunately, he has not quite figured out that there are boundaries outside of our house, but he is close. Very close.

It is interesting to see and understand how his brain processes and acts out situations.  While it can be problematic, such as today’s problems, it is also a very cool thing.  For all of the meltdowns, we have had many, many more great conversations about the stars, science, religion, racing, video games, war and a host of things. Mostly games and science.  The  breadth of his interest can, at times, be very cool.  I often forget how old he is.  He asks better questions than many adults I know.  How freaking cool is that?

Tonight was the first time he’s had a melt down like this since we got his diagnosis. Let me tell you, it was far easier to deal with, knowing WHY he is like this, than it ever was prior to the diagnosis. I felt so much more calmness in talking to him and not once did I lose my composure…something that has happened in the past.  When this used to happen, and we did not know why, it was frustrating.  He’s melted down over something so trivial as not using what he thought was the right door to exit Applebee’s.  Not knowing why he did was frustrating. Not knowing that there was a reason for this and he wasn’t just being stubborn made it very difficult at times to stay focused on calming him down and not resorting to threats about his toys or, worse, losing one’s composure and yelling.

Tonight, I knew why he did this (but, not the trigger) so it was easier to sit there, let him be him and try to calm him with out getting excited myself.  Staying calm certainly helped him to get calm and I was also able to determine that things that used to work, no longer do. 

And that is key.  Watch, regroup and try again.  But, stay calm.  His Mother figured out this out a long time ago, it took me a little longer.  He also seems to react better with me than her.  I don’t know why, it is not anything she is doing wrong. No, she is very caring and very loving, especially when he is that way.  I am a little more gruff.  I don’t know if that is it, may be he needs a little toughness, maybe it is the father figure (his biological father can also get him calm) who knows.  And don’t misunderstand, she does a great job with him.  She knows how to talk to him and can sense when he gets out of sorts. She changes her voice and supermom comes out.  Most of the time, she can fend off a melt down, which is probably why they got fewer and fewer.  Sometimes, though, he just snaps.  Like tonight.

We complement each other, I think. I’ve learned a great deal from her…when not to continue a line of thinking, when, and when not to talk to him about something, what battles to just let go and more.  I’ve taught her that certain things, even with his issues, just cannot be allowed.  The boundaries.  And also that it is OK to NOT blame oneself.

Children like Preston are the way they are because they are different. It does not mean it is your fault as a parent. It is not your fault they scream and throw fits in public. It is no one business, even in a public gym or restaurant. Embarrassing, maybe, but not your fault.

After the outburst tonight, we had ice cream and Preston went on to, happily, do his chores and watch a couple of YouTube videos. It was like nothing had happened.  And, that is the way with him. After these episodes, all is good.  He may have a headache, but he tends to forget that he had even had the meltdown.  Tomorrow, he probably won’t remember.

We will.

What if my other children are also Autistic? What if I am?

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.

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