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Wednesday, January 5, 2011

Baffled


My first born son is now 15 years old.  We have known that he has special needs since he was a toddler.  He was first diagnosed with a speech delay, later ADHD, then depression, and now Aspergers.

It took a while for me to accept the ADHD diagnosis, because at first I thought that the schools just toss that label around like it's a frisbee.  I had private testing done where the diagnosis was confirmed.  It did explain some of his behavior i.e. his tendency to be off in his "own world" and his impulsiveness.  It did not however totally describe him.  I knew there was something more.  He was a jigsaw puzzle and all of the pieces were not quite put together.

When we received the Aspergers diagnosis in his first year of middle school it was scary, but at the same time, it was a huge 'ah hah' moment.  It explained so much...the incessant talking about areas of interest, the obsessions, the difficulty with peer interactions, depression as a result of feeling different than others, lack of understanding humor, idioms and context clues,  difficulty with understanding fiction while he was an excellent reader of non-fiction.  It further explained his sensory issues and limited diet.

Here we are three years later and I still look at him sometimes and say, "WTHeck?" What is with this kid? Why doesn't he get it? I've said the same thing over and over again.  Does he think if he just keeps asking me the same questions, the answer will somehow change.  We usually have this problem whenever the answer is no.  No -we can't buy that.  No -you can not have company today.

Is he thinking let me just beat her down and wear her out -eventually she will give me what I want.  That is exactly what he's thinking. He has actually said it out loud, "Why don't you just give me what I want so we can avoid all of this."  It kind of sounds like a threat...or at least intimidation.

If you have been behaving atrociously, I am not going to turn around and reward you by allowing you to have company.  If you were not on time for school -I will not reward you by giving you a ride home.  You will take the bus.  If I take you to a restaurant and you are rude and ungrateful, why would you turn around and say, "Now can we go somewhere else?"  The answer would be NO!

O.K. so in my head, I know the answer to many of my own questions.  He has autism.  He is emotionally immature.  Sometimes, he just likes hearing the sound of his own voice and his own familiar dialog.  He makes statements and asks questions that comfort him somehow -even though they annoy the hell out of me.  Also -he is a teenager.  It his his job to test the limits.

It is my job to maintain the balance, keep the peace and to hold the line.  However, just because I know there is a reason for his behavior, doesn't make it any less painful to deal with.  That doesn't take away the headaches.  I often find myself wondering is this Aspergers or just a teenager trying to push my buttons? What's the difference? It's all exasperating.

Lately, it seems like things are going backward not forward. It almost seems like he's regressing in some ways.  I am looking towards the finish line (although I know it's not really a finish line).  I'm looking at him becoming an adult.  I want him to eventually become independent.  I want him to be successful.  I want him to be out of my house.  (I know that sounds bad...but hey, these are my confessions).  While he seems to be running in the opposite direction or at the very least, running on a treadmill that goes nowhere.

Why is it that I am watching his brother (who is 3 1/2 years younger and also has Aspergers) take off like a lightening bolt seemingly growing past his brother?  In this past year I have watched Blue become an independent, organized, self-starter, excellent student.  He gets up on his own every morning, takes care of all of his responsibilities for school and personal hygiene independently.  (Except the occasional reminder to put on deodorant.) While getting Red to do any of the above is like pulling wisdom teeth with no anesthesia or laughing gas. (Well..white wine is my laughing gas, or if things are really tough, a martini or a margarita.)

By the way, over Christmas vacation Red was up almost every morning before everyone else -usually around 8 a.m.  Sunday morning -he wanted to go to church with a friend.  He set his alarm and was up and dressed, on his own by 8:15 a.m.  Two days later, when school started we were back to "I'm just so tired!  I can't get up. I don't know what's wrong with me."  Yes -you know exactly what is wrong. "I just hate school because I have no friends." Exactly!

I realize that every child with or without Aspergers is different and I shouldn't compare him to his brother.  Still, it is baffling. I wish that he could be more introspective and tell me what he needs.  He can't seem to do that, so I have to help him figure it out.

I am the one person in the world that he knows will love him through anything.  Somehow that entitles me to bare the brunt of his negative behavior.  He doesn't have many friends,  that makes him sad, that makes him depressed.  Who does he take it out on? Me!  He's bored so he spends a lot of time fixating on the next thing he wants to buy and when he can't get it right away, who does he bug to death? You guessed it...me!

Where is his father in all of this...well thank God, he's still here.  Many fathers of special needs children can not deal with the pressure. They often have a hard time with the amount of time and attention that these children need.  Not to mention, disagreeing on treatment and parenting issues.

In our house, Dad's patience aren't nearly as long as mine.  Red knows this -so he will only approach Dad with certain nonsensical things and he will only push so far.  I play completely dumb when it comes to his computer, so he has no choice but to go to Dad with those issues.  Dad also has a knack for drowning things out much better than I do.  He also has the added benefit of escaping to the office or out of town on business on a regular basis.

The bottom line here -is that there has to be a better way.  Something has to give.  We need to do something different because I'm loosing it.

One of my New Year's resolutions is to find that better way -to get some answers and to help him move forward.  I have to keep him busier so that he won't be bored and bug the s#*t out of me. I have to find a social skills coach, a mentor, someone or something to help him to help himself.  He has a therapist and a Psychiatrist, but we can't keep doing the same things and expect different results.  This may mean having him re-evaluated and getting a second opinion from a Neurologist or Neuropsychologist to make sure that we are on the right track.

It's crunch time.  I have three years before this dude is 18.  I may be wishing on a star to hope that he will be on the road to independence by then.  I do know this for sure...he has loads of potential.  I intend to see to it that it does not go to waste.

2 comments:

  1. I would definitely suggest pursuing a social skills class for him - it's helped Nigel immensely. Beyond that, I totally know what you mean about losing it. I've felt that way a lot. Hang in there!

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  2. Karen my son Joshua is 12 we got his diagnosis 6 months ago. It has been very hard lots of tears, lots of fears. Josh is alot like your son Red. On the way to my doctor appt. this mornig for 5the first time I said a prayer about giving up. I get back to work and I pull up my Autism reading for the day and there is your article. Throwing up your hands, everything you wrote is how I am feeling and more. I went to your blog and it was so nice to see I am not alone, I don't mean that in a bad way, I would not wish anyone to have to go through this with their child. Thank you for your blog, I will continue reading it and I will be praying for you and your family. God Bless you All. Rhonda Parsons from Sikeston,MO.

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