Harsh Reality

It has taken me quite a few days to sit down to write this, but with Father's Day fast approaching, it weighed heavier on me with each passing day.  It needed to be voiced in some manner.  Last week, Jason had an appointment with his neurologist.  Just a regular follow up, nothing major.  However, he hadn't seen the neurologist since being diagnosed with bipolar disorder.  Once the doctor was informed of the new development, he asked about his dosage of medications, how his behavior's been since the changes, etc.  He also talked to Jason for a bit one on one (I was still present).  He asked me about our long term plans for Jason, given the autism and bipolar.  What our goals were for him, academically and in life itself.  I told him the truth, our hopes are for him to graduate high school, MAYBE get through college and if we're lucky, he'll live in some kind of assisted living arrangement or facility.  That would mean he basically lives alone, with someone checking in on him a few times a week to make sure he has what he needs and doesn't hurt himself.  I was told that, barring any further progress, which is of course possible, he is at that point right now.  If something were to happen to us today, he is good enough to live alone with some help. 

Now, we try our best to just worry about the day to day because frankly, that's more than enough most of the time.  Worrying about the future is frustrating on MANY levels.  For starters, I know he'll probably never be well enough that I will feel comfortable with the idea of him living alone in any manner.  I accept that.  We came to the realization a long time ago that Jason would probably live with us till the day we die.  I'm good with that, that's the responsibility I signed up for when we decided to have children.  In the back of my mind, the constant worry is what happens after I'm gone.  There is always a little piece of you that hopes he will progress to such a point that a "normal" life will be possible.  Don't get me wrong, I still have hope for that.  That blue light will always shine, no matter what.  I try my best to shine it on him and get him to feel some hope as well.  Sometimes, though, the red light of rage brings me back to reality, when his rage leads him to do things and say things that he shouldn't be saying or doing.  On those days, it's hard to see the blue light at all.  Even though, we knew he was at that point, to hear the doctor say it out loud was very tough to hear. 

Some would say that we have done a great job getting him to this point, considering the condition he was in when he was first diagnosed.  Others might say we still haven't done enough, that he still isn't like other kids his age.  I try to tell myself the first sentence, but very often feel like the second.  It can cause a lot of friction between us, the responsibility, the worry, the feelings of failure and frustration, of simply not being a good enough parent to our son.  Marriage is never an easy thing, autism does not make it easier.  The divorce rate for parents with autistic children is around 90%.  We're still together over 10 years after diagnosis, not common at all.  The weight can be overbearing sometimes.  When a set of parents gets the diagnosis and asks us about what to expect, I always say to them, expect your marriage to suffer a lot.  Everyone talks about the impact on the child and rightfully so, but the impact on the parents, both in regards to the child and each other, is important as well.  This last week and a half, we have struggled with those thoughts, that future for Jason.  That meant a lot of stuff directed at each other, because who else are you going to direct it to?  Only someone who has walked in our shoes for a while can truly know how hard it is NOT to take shots at each other sometimes.  We're the easy target for each other.  Is it fair?  Hell, no. 

So, at the end of the day, you try your best to make things right with each other and with the child.  All you have are each other.  We try to understand each other's way of coping with things, and move on, cause the kid's not waiting around for us to get our act together.  We're still gonna work towards the day he can have a "normal" life, try to keep our fears and frustrations limited to ourselves.  It's a harsh reality, but he didn't ask for it, so we gotta try and make it work for him.

Weekend trip to the theater

Last Saturday, we decided to go see Thor and made the decision to bring Jason along.  He has previously been to the movies three times before, with varying results.  The first time was to see Monsters, Inc. when it first came out.  At the time he was obsessed with the Toy Story VHS, so we figured he would go for it.  He was fine until the lights went down and the previews started.  He clasped his hands over his ears, saying it was too loud.  Mommy ended up watching Monsters, Inc. while Daddy and Jason hung out in the hallway with a life size mock up of Mike and Sully.  The second time was to see Wall-E.  This time, he was the one asking to go, so we decided to give it a try, knowing one of us might end up in the hallway again.  He insisted on bringing his cousins, my brother's kids.  He was mesmerized the whole movie and absolutely loved it.  He even wanted to go to Target and buy the DVD that day.  It took some convincing for him to understand that the DVD wasn't out yet.  Of course, the day it was released on DVD, we had to run out and get it.  The third time was to see Transformers: Revenge of the Fallen.  He had seen the first Transformers movie while shopping at Best Buy.  It was playing in the Blu-ray aisle, and he sat down cross legged in the aisle and watched the last hour of the movie.  (We couldn't leave until he saw how it ended)  He ended up using some birthday money that he had to buy a copy of the DVD for himself.  So, when the sequel was announced, he wanted to go.  He saw the whole movie, but he didn't like it.  We were just happy that for the second movie in a row, one of us didn't spend two hours in the hallway.

With all that said, we felt comfortable taking him to see Thor.  He had seen and liked Spider-Man, Spider-Man 2, X2: X-Men United and the entire Star Wars saga.  (Yes, he likes all six of them)  He gave a song and dance about not wanting to go, so I bribed him with pizza for dinner if he behaved.  Yes, I am not above bribery, call me Al Capone, cause Jason sure as heck isn't Eliot Ness.  During the previews, they showed Captain America: The First Avenger and Green Lantern.  When we asked him about those movies, he went to great lengths to hide his interest in Green Lantern, but his smirk told us what we needed to know.  He behaved during Thor and paid attention.  The biggest problem was the volume on the speakers when the thunder was being used.  Jason hates fireworks and thunder is barely tolerable, but magnified as it was, he wasn't liking it.  It was definitely louder than it normally would be.  When the movie was over and we were walking to dinner, we asked him if he liked the movie.  He said he thought Thor himself was cool, but he didn't like the thunder at all.  I was worried that I might have turned him off to the movie in general because of the noise.

After dinner, we went to Target for some stuff we needed.  Jason, as always, wanted to go to the toy section.  So I went with him, while Arlene got what we needed.  I was standing around looking at some stuff, when I found the Thor toys, including a hammer with button that lights up the hammer like it's shooting lightning and rumbles with recorded thunder.  Next thing I know, he's got one of the other hammers, and he's hitting me with it in exactly the same manner Thor was using it in the movie.  When I looked at him, he was giggling, saying "I AM THOR!"  So, I learned that he was DEFINITELY paying attention to the movie, and he wasn't so afraid he wasn't willing to take up the toy and pretend he was Thor.  Side note, Arlene asked me after the movie the real name of the actress playing Jane Foster.  I replied Natalie Portman.  She said, "I've seen her somewhere before."  I told her she was in Star Wars.  Jason chimed in with "She's Queen Amidala" just as I was saying that she was Padme Amidala.  Definitely was paying attention.  Good thing he didn't ask why she was kissing Thor when she's married to Anakin.

Posting comments, part 2

I worked on this a little more, just trying to see if I could head off any potential problems.  In the previous post, Amanda commented that her experience was that if the comment doesn't load, the best thing to do was to copy the comment, reload the page and paste the comment to try again and it would usually load properly the second time. 

I checked a little further last night, and have some (hopefully) helpful answers.  When you first come to the blog's page, in the top right hand corner, it should say either sign in or sign out.  If it says sign out, you are logged onto Blogger through some service (Google, AIM, etc.), so you should be able to leave comments with no problem.  If it says sign in, you can still leave comments, you just have some extra steps.  When you go to post a comment, you will see the comment box and underneath it will say "Comment as" with a drop down menu.  If you are signed in, your name will appear along with the service you are using.  If you are not signed in, the drop down menu shows various services used to sign in with.  If you use any of these services, select it ( Google for Gmail users), and you can then sign in and leave a comment.  If you don't want to sign in or don't use any of the services listed, near the bottom of the drop down is the option "Name/URL".  Select that one and it will let you just put your name or select "Anonymous" if you don't want anyone to know who you are.

Hope that was helpful.  Anyone still having trouble, please let me know and I will do my best to help out.

Arlene's side project

The title of this post makes it sound like something big and time consuming, but it really isn't.  Arlene decided to print out every post, along with its corresponding comments, and save them in a binder.  The hope is that someday Jason will be able to read them and fully comprehend why I did this, as well as appreciate the thoughts and feelings we had about past events in his life, like the awards ceremony on Thursday night.  Will the day come that he'll be able to read this blog and understand its meaning?  I hope so.  If that day comes, his mom will have it all saved for him.  Until then, I'll keep doing what I do and hoping. 

Every once in a while, there is a blue light

Last night, we were invited to an awards ceremony at Jason's middle school.  We did not know what award Jason was getting, although we had our suspicions about what it could be.  We were there, along with my parents.  Before I get into what Jason got, I have to first mention that several of Jason's classmates won awards as well.  While each and every one of them is special and impressive in their achievements, one in particular stood out. 

Every single time that his name was called, the whole auditorium clapped like crazy.  (We all clapped for every child, and the principal even mentioned that at the end, how we had been so supportive of all of the children, but the applause for this kid was different)  Some parents were even brought to tears.  The reason for this, is because this particular child is mentally handicapped and wheelchair bound.  He happens to ride on Jason's bus and waves hello to me every day when Jason is picked up in the morning.  He's a great kid, and tonight, he showed an auditorium full of parents and schoolmates to look past the wheelchair and the physical deficiencies to a child whose brain was as bright and intelligent as anyone else's. 

As for Jason, he walked away with not one, not two, but THREE awards.  The first was a certificate for Outstanding Achievement in Social Studies.  The second was a certificate for the President's Award for Excellence, presented by the President's Education Awards Program for Outstanding Academic Excellence.  The last was a trophy for getting straight A's on his report card for all eight marking periods that he has been in middle school (6th and 7th grades).  There were a lot of high fives, hugging, kisses from mom and grandma, and grandma shed more than a few tears also.  Nights like that help soften the memories of other nights that you would much rather forget.  On nights like this, the blue light shines very bright indeed.

Posting comments

Ok, so apparently, some people have been experiencing difficulties posting comments.  I think I took care of the problem, but if it persists, please let me know about it and I will try to get it resolved with Blogger.  This is my first ever blog, so bear with me through these (hopefully brief) growing pains.

Swimming and Special Olympics

Jason has been swimming regularly now for over two years.  He enjoys being in the water very much, it's a form of therapy to him.  Late in 2009, he was invited to join the PST Piranhas.  PST stands for Plantation Swim Team, which covers the cities of Plantation, Sunrise and Tamarac.  The team has three levels, the first being Strokes 'n' Fun, which is where Jason started out.  He swam at that level through all of 2010.  At the end of the year, we were informed that the coaches felt he was ready to move up to the second level, JO1.  At this level, the kids start working towards getting their Junior Olympics qualifications.  When they swim at meets, each event has a time to beat to qualify for Junior Olympics in that event.  Jason has been swimming at this level in 2011, but has not been in any meets.  We just felt he wasn't ready for that experience.  It's a lot of craziness, noise, confusion.  However, his competitive nature busts out when his teammates get their medals and ribbons and awards for swimming in meets and improving their previous times and qualifying for Junior Olympics.  "Why can't I get a ribbon or a medal?" is the usual question we get.  Coach Christi, Coach June and Coach Scott have been very understanding and patient with Jason.  They have helped him grow more than I can say.  This was something, however, that I didn't see a solution for.  Thankfully, Coach Scott did. 

He suggested putting Jason on the Special Olympics swimming team, the Wahoos.  It would be an opportunity for him to do competitions, without the very strict guidelines of the regular competitions.  Get him comfortable with how competitions go, ease him into the real deal, if possible.  He would be swimming with others that wouldn't judge him or make fun of him. (Not that such a thing has happened with the PST team, quite the opposite)  We figured we'd give it a try, but Coach Scott said he wanted one condition: he didn't want Jason to leave the PST team, a condition we readily agreed to.  Last Saturday was Jason's first session with the Wahoos.  It went very well, and he even met up with a guy that had played baseball with him two years ago in the Challenger Little League.  (Challenger Little League is a division of Little League for disabled children)  The only real problem was getting Jason to go in the first place.  He first reminded us that he only swims Monday to Friday for practice, Saturday and Sunday is for fun.  Then he went on to say, when he got there,  "That's not my team."  The kids at PST have gone out of their way to treat Jason like any other kid, and the fact that he was hesitant to swim with anyone else but his teammates speaks volumes to that.  Once he got into the water, he was ok.  It just became swimming after that.  His first competition is in July, so we'll see how things go between now and then.