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

Archive for the ‘growing up’ Category

The Extended Family

Last night, Preston was having a bit of a difficult time. He had a concussion in November and is still suffering from the ill effects of the injury. He was a little upset that the weekend was over and he wanted to spend more time with his father. I may be step Dad, and treat him like my own, but I’m not DAD. I explained to him that I knew exactly how he felt. He gave me a funny look as if to say ‘yeah, how would you?’ I told him how lucky he was, he had two Mom’s and two Dad’s who love him very much. When I was growing up, I didn’t know my ‘birth’ mother or my Dad. I had spent some time with them, but didn’t really know either. The lady I called MOM, adopted me when I was his age. I told him that I didn’t really get spend any time with my Dad until eight or nine but got to really know him when I was a teen. I told him it was OK to feel the way he did and never be afraid to talk to me about it. He gave me the biggest hug, like a burden had been lifted. He asked me a few more questions about my childhood, which I answered. I reassured him that his Dad was welcome to drop by anytime he could to spend time with Preston. It also made me think about ‘FAMILY’.
They say blood is thicker than water, which may be true, but FAMILY trumps it all. And, in my book, there doesn’t have to be any blood relation to make a FAMILY. Yesterday was my SISTER’s birthday. We are not related by blood and, it seems, we don’t even share the same mother…but, that is OK. I grew up knowing who my family was, just as I want Preston to know his. Mike has been part of my family for six years now and it does not matter, to me, how that came to be. He, too, is part of my family.
Ann, the sister who had the birthday yesterday, and her late husband, treated me like a king when I was little. I remained very close to them until they moved to New York. I always had a problem with that, but, I really do not know why. They moved to be closer to their son and grandchildren. As that happened after the deaths of my Mom, my Dad and my first wife, it kind of felt like I was being left alone. That scared me. I don’t know why, as I still had a big family right here at home. My son, my then girlfriend (whom I married a short time later) and the rest of my family-which, just seemed invisible.  Ann and I grew apart, but not very much. The death of her husband had a big impact on me, he was, after all, like a Dad to me for most of my life. And, even though I don’t talk to her as much, I still love her and nothing will ever change that. I have three other sisters too…Mary, which Mom also adopted; Katy, who is my blood sister (meaning we are actually, biologically, related-have the same parents) and Rose. I could write a book about this.
Each one of those three ladies are awesome in their own ways and, as a result, I feel like I am a better man because of things I learned from them.
Mary was always unapologetic and adventurous. She showed me that following the rules was not always the best thing to do…I know how that sounds, but, she was right.  She’s had some rough times, but got through them and is now a fine lady, content with the way things turned out. Even now, when things don’t always go the way they should, she maintains that same attitude. It is a quality I wish I had.
Katy is my more liberal minded sister.  Polar opposite of me, more like the way my Dad thought.  She is very much like him, her sense of humor, the way she looks at things and the way she just accepts people. Well, OK, my Dad was not quite as accepting of a lot of people.  I didn’t grow up with her, we saw very little of each other as the ‘social workers’ in Chesterfield did their best to keep us apart.  We keep in touch now and I’m very glad we do.
Rose was a foster child Mom had for several years.  When she was released from the foster care system, she chose to stay with us. Rose has a physical disability–cerebral palsy–that left her not quite as mobile as most are.  She complemented the rest of my expanding family, only moving out on her own when she was in her late twenties.  Over the years, we’ve drifted apart and I do regret that.  It is one thing I need to work on. It isn’t because of an argument or anything like that. For the longest time, I convinced myself it was the distance-she lives in another state with what is left of her family. Distance, though, is a cop out. I just need to do it.
Suffice it to say, that there is actually very little ‘blood’ in my family and that’s OK.
That brings me back to Preston.  The difficulties of just trying to cope with the big world and Autism is hard enough.  Having your life change so much and in such a short time is overwhelming.  When he started to melt down last night, I though ‘oh my lord, what did I say this time’, but, this time, I think he was just looking for some comfort, even though it took a bit of effort to get him to open up.  And, he isn’t one to just blurt out what his problem or problem really is.  You have to piece it together.  That’s tough to do.
Little dude is having a difficult time dealing with his now bigger family. The two small one’s, Sam and Xander, bug him. He has to share a room with Sam when he goes to his Dad’s house and, soon, will be sharing a room here, with Xander. Sam is step brother (and cute as a button) and Xander is half-brother. Both are just annoyances to him. I suspect, in a few years, that will change. He still sees Xander as a bother, but warms up to him when he thinks it is necessary and plays with him, from time to time, without being prompted to do so. He still thinks that both are out to kill him, even though they are just playing.  In Preston’s view, there’s little difference between play and non-play action. It is something he is trying to learn.  He’ll figure it out. He’s one smart kid.
He also thinks he doesn’t get much time with Dad.  He’s right, he doesn’t.  That’s not anyone’s fault, it’s just the way things are…it’s not always fair. However, having said that, it isn’t quite the lack of time that Preston perceives it to be.  Dad picks him up Friday afternoon and brings him back, early evening, on Sunday’s.  Once in a while, that doesn’t happen for various reasons…vacation, work, illness, etc.  It isn’t because Dad doesn’t want him or we don’t want Dad to get him. Those are infrequent.  Not to Preston, though. One of the Autism traits he exhibits is perception distortion. That is, two days to him is more like two hours.  This past weekend, Dad picked him up for physical therapy and then took him home. He came back a bit early for a birthday party that he had been invited. Now, we are only talking a couple of hours difference from the norm, but, for Preston, it was like a day. Add in the time that Dad spends with Dad’s new family and Preston feels like he doesn’t get enough Dad time.  And, try as I may, I’m not Dad. Nor am I going to pretend to be. I will treat him like mine, but never try to replace Dad.  And, that’s the way it needs to be.  I think Preston has accepted me as ‘dad 2’ and, in this case, I’m happy to be number 2.
We are all working with Preston to not look at his brothers as anything but brothers.  Preston has fully accepted Chase as big brother and Chase loves him the same way. They get along great. He also seems to have accepted his new sister–also older than him. It is just the young ones he has a problem with…they are, after all, trying to ‘kill’ him, you know, when they are not playing with him. He has yet to realize the support system he has or how big his family has become.
In time, though, I hope he will come to appreciate his expanded family as I have mine.

A Missed Opportunity with my Dad

I’m going to share a father-son story, only, this time, I was the son.

For my entire life, I have always loved science fiction and, especially, Star Trek. And, as of the date of this post, that show is fifty years old and, today, September 8, 2016, is exactly the fiftieth anniversary of its first airing on the NBC television network. Even the day is the same…Thursday.

Well, I’m not old enough to have watched it in its first run, so I watched it on the local TV stations that aired it in syndication in the early 1970’s.  I watched intently.  I always imagined myself as Captain Kirk and went around with my ‘Star Trek Utility Belt’ and battled Klingons and Romulans, well, mostly Klingons…they were the cool enemy.

As I got older, my dad felt the character of Harcourt Fenton Mudd was more appropriate for me and he called me Mudd.  I didn’t care, I liked Harry Mudd and was ecstatic that the character was in three episodes (two in the original show and one animated episode…and, to my delight, he makes a cameo in a Deep Space Nine episode that incorporated The Trouble with Tribbles.) So, throughout my young life, I was known as Mudd.  There were times that I hated it, but, mostly, I just embraced my inner Mudd. You should too, there’s a little Harry Mudd in us all.

Well, in the mid-1970’s, there were these rumors of a new Star Trek TV show.  I was a TV Guide fanatic and read intently all of the rumors there and any where I could.  And, then, one day, it was true!

Paramount decided it was going to start what was, at the time, a fourth commercial TV network and Star Trek was going to be the flagship show.  I was so excited.That excitement, though, was short lived.  Paramount soon decided to scrap not only the network, but the show too!  There was some good news, though…they were going to make a big budget movie!  And, best of all, they got all of the main actors back, including Nimoy, who, at the time, hated everything related to Star Trek. Or, so it was said.

Well, fast forward a long year or so and the movie premiered.  My Dad had promised to take me to see it.  Well, at the time, my father had re-married and moved about fifty miles north of Richmond, to Fredericksburg.  I didn’t see him much during that time, maybe two weekends a month. Logistics more than anything else, was the problem.  Sometimes, it was my step mother who picked me up as my Dad worked evenings and I was still in school.

Well, it was, finally, time for the movie to open in Fredericksburg and my Dad said we would go.  Well, during that week, he went and saw the damned movie without me! I didn’t know until my step mother picked me up.  She got me early that Friday-I got out of school by three and she was waiting for me.

On that long drive – long to me – to Fredericksburg, we stopped in Ashland to see my Dad. That’s when he dropped the bomb on me.  He had to work that night and I would have to go to the move BY MYSELF!  I had been so looking forward to  not only seeing the movie, but seeing it with my Dad.  He was the only person who ‘got’ my love of all things Trek.  My step mother hated it, so she wasn’t going to go.  Which, I suppose, was OK, though I would have been excited to go with her.  My Dad gave me some money for the movie, popcorn and a soda, ten bucks, I think.

Oh man, was I hurt. When he told he had seen it, though, that was the worst.  I felt betrayed. Betrayed by my Dad.  I could not believe he would do that. To ME!

The rest of the drive to Fredericksburg was quiet. My poor step mother tried to make conversation, but I was having nothing to do with it.  Brooding, moping, whatever.

We got to my Dad’s house and I took my bags in, got some water and then she took me to the Four Mile Fork Theater-which is a car dealership now, I think. She dropped me and said she would be back in two and a half hours. I thanked her and, cautiously went in the theater and got my ticket.

This was also the first time I had gone to a movie by myself.  Now, I was not only upset about my Dad, but was a bit anxious to be there alone.

I got my popcorn and soda and sat down. Mid way up the theater and in the middle. I wanted optimal viewing and sound. The movie, supposedly, had this awesome soundtrack.  It did.

When the lights went down, and the curtains opened, I stopped being mad. I stopped feeling alone.  I started to feel that sense of excitement and wonder well up again. The feeling I had had for a long time.  After the previews were done (no ads back then, just a couple of preview and then…) that Paramount logo popped up. The crowd went nuts.  I remember that long intro music and, then, that first scene.  You could have kicked me between my legs and I would not have noticed.  For the next two-plus hours, I was enthralled.  Man, Admiral Kirk sure seemed nervous and that twit Decker…who the hell was this guy anyway? It took me awhile to connect him with the Doomsday Device Commodore Decker.  Oh, and the bald chick? Yeah, being a teenager, well, lets just say I REALLY dug her. Oddly enough, though, Mr. Spock made me hate him at first.  It wasn’t until V’Ger injured him that I started to like him again. He was more of an arrogant ass than normal. And, the others, they were just there, I didn’t give a crap about them.

When then end finished, I was pumped and disappointed, at the same time.  Pumped over the movie being so big in scale and, yet, not very fulfilling. Disappointed because I didn’t get share it with my Dad.

I don’t know why he chose not to see it with me, we saw the next two together. We saw the Star Wars movies together.  I never asked him why.  I had gone to bed not long after the movie.  I didn’t want to see him that night.  I talked his ear off the next day about the movie, but, that night, I didn’t want to have anything to do with him.

He never said he was sorry, or even mentioned it again.

I finally stopped being mad about it. And it seems so petty today, but, when I was 14, it was a pretty big deal to me.  An experience I wanted to share, with person I looked up to the most.  Something we both shared a love for, yet, he chose to work instead.  This is something I swore I would never do if I ever had children. And, for the most part, I have put my kids ahead of my job. There have been a few times where I absolutely had to work and either miss or be late for something, but that has been rare. And, sometimes, I catch myself putting myself ahead of them.  I try, very hard, to not do that, but, I too, fail. One of the things I never thought about, until I had children of my own, was why he chose to work.  It is very possible that it was one of those ‘absolute’ moments I spoke about. I am going to go with that.

The father-son dynamic is very important.  Fathers should experience all the ‘firsts’ they can, with their sons. (Ok, daughters too.) They are moments you will NEVER get a chance to relive.  Even with multiple children, what one may value, another may not give a crap about.

I still wish we could have seen the movie together though.  Maybe I’m not completely over that.

We finally made ‘the trip’…to Cedar Point

WP_20160824_17_37_05_ProMy oldest son, Chase, is a theme park junkie.  He always has been.  Like myself. Like my father. It was prevalent on his mother’s side as well. She loved them, so did her father.  For the first few years of Chase’s life, we only went to Busch Gardens, in Williamsburg, Virginia.  When he got old enough to start riding the kiddie rides, we began getting season passes to Kings Dominion, a theme park just north of Richmond, Virginia.  Chase always had a fascination with rollercoasters, playing the game ‘Rollercoaster Tycoon’ on our computer. It was an impetus behind his desire to learn to read.

Once he actually rode one, though, he became obsessed with the rollercoaster. His first one was the Barnstormer, 4EC3E5D0-4C3E-47C8-9BA0-B64E95AB6678 (1)which was—oddly enough—at Disney World in Florida. From that point on…and once he could read…he started learning all he could about the various rollercoasters in Kings Dominion and Busch Gardens.  Riding each one with him, as was able to ride them, was such a thrill.  Not only for the ride itself, but seeing his reaction.  The sheer joy he got from riding them.  The sense of accomplishment when he could, finally, ride that ‘big boy’ coaster or the one that had tallest inversion or this or that.  It was just as much fun for me seeing his reaction as it was for him to ride them.

Indeed, when he was able to ride the Hypersonic XLC at Kings Dominion, you could not smack that smile from his face.  See, this thing was a launch coaster, went straight up and straight down. The whole ride was done in just seconds. It looked menacing.  His sense of accomplishment was off the charts.  This particular rollercoaster, though, did not become a favorite. The next time he rode it, it gave him a really bad headache.  I felt horrible for that.  The rollercoaster was dismantled shortly after that anyway. But, that first ride…I don’t think I have ever seen that much enthusiasm, joy and wonder from him.  It was awesome.   He hasn’t been that way since. Oh, sure, there were times where he came close, but nothing has really matched that … until recently.

WP_20160824_18_33_30_ProBefore I share that, though, lets continue with his journey into rollercoaster enthusiasm excess.

Every vacation we had was planned around some kind of amusement or theme park trip.  Be it to the great land of of Orlando, Myrtle Beach South Carolina, or where ever, there was an amusement park close by.  We hit parks like Disney World, Carowinds in Charlotte, the two in Virginia, Six Flags America, small ones like Family Kingdom, the Pavillion and Hard Rock Park (all in Myrtle Beach) and Trimpers and Jolly Roger in Ocean City, Maryland.  Recently, we made it to Dorney Park in Pennsylvania, but that was just a day trip. There was one park, though, that remained elusive.

All through his young life, Chase would read all he could and watch all he could about rollercoasters.  He read about the tallest, the fastest, the longest, etc.  One park kept showing up with all of these wonderful machines:  Cedar Point in Sandusky, Ohio. 

He desperately wanted to go.  For years, my late wife and I had planned to take Chase.  We even got as far, about ten years ago, as reserving a room near Sandusky.  Unfortunately, life kept getting in the way and we never made that trip.

In 2010, Chase’s mom passed away.  Early that year, before she became ill, we had talked about going in 2011.  As her health declined, so did our plans, once again. I took Chase and his cousin on a sort of rollercoaster ‘tour’ that summer, but Sandusky wasn’t in the cards.

Two years ago, Chase got his drivers license and decided to go to work.  He fulfilled one of his lifetime dreams and worked as a ‘scare actor’ at Kings Dominion.  He is really good at it too and is doing it again for the third year.  WP_20160824_18_06_23_Pro

Chase and I had talked about going to Sandusky last year, but, as was always the case, it just did not work out.  But, as he always has, Chase did something I never expected.

He gave me one of the best Christmas presents ever:  a rollercoaster tour that was to include Sandusky.  We started out by going to Carowinds, a place special to us both for reason I won’t go into now.  Sentiment aside, it really is a nice park and, if you get there, ride the Fury 325…one of the best rollercoasters ever.

As summer went on, we kept hitting this snag or that and our trips were delayed or altered quite a bit. Our trip to Dorney Park was to be a two day trip, but turned out to be a day trip…quite a drive to ride a handful of coasters, but the time we spent in the car was well worth it.

So, getting back to the sense of awe and joy he had with the Hypersonic…well, he showed it once more when we actually pulled into the parking lot.  I felt it too.  After about twelve years of trying, we finally made it. Walking through that turnstile, seeing the old Carousel and, looking to our left, the bus used for the Hallow weekends and seeing the Raptor…well, seeing the look on his face…was priceless. Even at 19, that sense of wonder shone through his very adult face.  My eight year old boy from 2005 was with me once more.  We were both quite, walking around, taking it in.  The park was not busy and we were able to ride one of the coaster he had only dreamt of riding just a few years ago…the Raptor. 

The next day, we spent walking around, riding the coasters, taking photos (that was me) and not believing we were actually there. Fortunately, the park was not busy and we were able to walk on to most of the coasters.  Millenium Force has to be one of the smoothest rides ever. Exciting, fast, TALL…this was THE coaster he wanted to ride. Of all the coasters anywhere, this was the one he had talked about the most, since he had first seen an on ride video.  Getting to ride it, for the first time with him, that was special.

We spent that day, not really saying much, but bonding and have a great time.  The place is massive and we have to go again. But, any other visit there will not be the same or as special as this one.  Sure, it will be great to have my other two sons and my wife with me (I was lucky to have another wife who also loves the parks, she’s pretty awesome) but this visit, well…after so much anticipation…well, it was just special.

WP_20160826_12_38_25_ProPerhaps the most ironic thing was that it ended up with Chase taking ME instead of me taking him.  And that’s pretty damn cool.

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.

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.

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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