Friday, August 24, 2012

Love this kid!

Have I mentioned lately how much I love this kid?

No really. He totally rocks. I know, we are all supposed to think that of our children but really, he's the best.

Sure I get frustrated. Sure I want to throw things, yell, scream, hole up, etc. But really, at the end of the day, he is truly my heart.

I've been counting down the days until school starts (2 days!) like all parents do. How many days it is until we can get that 6 hour break, 5 days a week. When I reflect back on this summer, the first summer ever like this one, I have to say.... I just may miss him.

This is my first summer where I didn't work. For 9 years I have worked 40 hours a week (and in recent years had summer courses for my Master's) and had so little time to spare. This summer he was away for one day a week. He went to the local YMCA every Monday and had one heck of a time at Camp Sherwin with his TSS in tow.

We spent 99% of our time attached at the hip. There were times when I was quite certain that what was left of my sanity would just fly right out the window. He would sneak into my bed in the middle of the night. Curl up with me in the morning. Interrupt my showers. Follow me around the house. Accompany me on every errand. Even go out to dinner with me and my girl friends.

He saw more of his mommy's daily life in one summer than he has the previous 9 years combined.

His BSC asked me yesterday if I had seen any of the behavior we saw at the end of the school year. He was clingy, would cry easily, and was constantly fearing that I didn't love him for some reason.

You know... I haven't. She said this summer must have been great for us, it allowed us to reconnect and he got to see how much he is loved.

Well damn. She's right.

I think back to all the lazy mornings. Announcements of being out of some food item or another (seemingly every day). Paper creations everywhere. Legos.... (Nuff said!) Pleas to stay up (not like either of us had anyplace to be!). Road trips. Explosions from the microwave. Strange noises I'd hear as I lay in bed quickly followed by "It's ok mom! Everything is all right, I promise! It was nothing!" I can't help but chuckle.

Last night I told him he had to start sleeping in his own bed. I barely had it out when he asked why. I told him he needed to get ready for school to start. I could see it in his face. As excited as he is for 4th grade....

He isn't ready for summer to end either.

Sunday, August 12, 2012

A Pastor's Response...

A couple weeks ago I posted a response to Autism Daddy's blog on the religious view that parents take on "God won't give us more than we can handle".  He even takes the time to pull apart what people are using to found it on from the Bible.  You can read his opinion here and yes, he also has a son with Autism who is not as able as my own.  I LOVE his response!!

You can read my original post here.

Autism Daddy's post here.

Wednesday, August 8, 2012

The time had come...

Several years ago I had taken my son to the Children's Hospital in Pittsburgh to get a second opinion/evaluation on his diagnosis.  It was a long tedious visit as my mother and I sat through many evaluations, filled out forms, and moved from waiting room to waiting room inbetween.  At the time I was offered medication for him to help combat some of his hyperactivity and because "many Autistics simply benefited from it." I ran.  The psychologist told me that if I ever wanted to consider the medication to let her know and bring him back.

The hell that was going to happen, right?

So here I sit, 4 years later.  He can't focus.  He's bouncing off the walls.  He has major impulse control issues.  He knows something is wrong and wants to be 'fixed'.  It's affecting his every day interactions and his ability to work at school.  Sigh.  The time had come.

So last May I called his pediatrician's office.  They sent me the forms I was already so familiar with.  I filled them out.  So did my mom, my fiance and his AS teachers at the school.  The end result was confirmation of what the psychologist told me 4 years prior, he has ADHD.

Last night I went and picked up the medication.  Let's just say 'mixed feelings' doesn't even begin to describe how I feel.  Four years ago I ran with the argument that he's 5, he's a boy, he need to run and play and be a normal kid.  Watching him over the last year has been extremely difficult.  I can no longer use that argument.  I can handle all the items that got broken.  The bumps, the bruises.  What I can't handle are the meltdowns and requests to be fixed.  The endless energy that sends him literally bouncing from one wall to the next.  Him crying over there being something wrong with him and needing a new brain.

He has been kept up to speed on what the doctor's visits were about and what the medication is for.  He has been anxious to start it.  He is aware that it is supposed to help calm him down and allow him to focus better.  When we got home last night and counted the pudding he wanted to take it right then.  (He can't, he has to take it in the morning before breakfast. Since he can't swallow pills we have capsules that I have to open up and put in something he'll eat.)  I then sat down to look at the information sheets.  Within the first couple words were "sudden death."  I near fainted...  Not what a mom wants to see, you know?  But I sat there and kept repeating that it only happens in people with heart problems and he had a normal EKG.  Something I am still repeating to myself today...

Needless to say this morning the first thing he thought of was the pudding.

It's been a couple hours since he has taken it and he is just fine.  I feel a little better.  But I can't help watching his every move.

Tuesday, August 7, 2012

It's ok, I'll sleep when I'm dead...

Sleep seems to be a thing of the past in this house.  My son has woken up in the middle of the night for the last couple of weeks and seems to have lost the ability to get himself back to sleep.  What ensues is lots of running up and down the hallway, lights turning on and off, and lots of being startled awake by a face sitting way to close to mine, watching me....

We have the rule that he cannot leave his room before 6:30 am.  This has actually stuck much to my relief.  He used to get up at 3am and go downstairs and play on the computer.  Since I locked the computer down and it won't let him access it before 6am that has died.  (Microsoft provides this service/software free and is FANTASTIC!)  But of course that means when he wakes, we are in close proximity to a wound up child who quickly gets bored.  The result?  No one sleeps.

The weird thing is you'd never know he was up so early.  He's always so bright eyed and grinny while the rest of us drag through the day taking naps by midafternoon.  I've never understood how that whole thing works.  If he falls asleep and wakes up, he's fine all day.  However, if he doesn't fall asleep before midnight because he has trouble falling asleep, he's one cranky terror all day.  He could get the same amount of sleep or less sleep in the first scenario, and it would still work like this.

I'll admit, there are nights that I am so worn out from several of these nights in a row that I don't even wake up for him.  He may sneak in with me or he may stay in his room.  The blessing is, he doesn't go downstairs.  It may be the ONLY rule in the house he doesn't break.  I'd swear it's the only one he actually knows how to apply to himself.  What does he do during those long dark hours?  Who knows.  Mostly read.  I always find books scattered across the floor.  He also has his dvd player up there although I'm not sure he actually plays it.  He really does his best to stay quiet so his mommy can sleep.

However, it seems that the more often this occurs, the more likely it is that he will sit on the bed and chat.  I don't know what he's talking about most of the time and I admit I mostly just grunt and make noise to acknowledge what he's saying without knowing what it is he is saying.  Trust me, it isn't easy to process Alexese when you are barely awake and your brain is not running up to speed.

After all, it is 3 am.

I do give him melatonin.  This has been a BLESSING.  He gets a pretty decent sized dose but it's my only defense to get him to sleep.  It's a well known fact that Autistics lack melatonin.  There is even a new study out there that suggests mothers of Autistics actually have reduced levels themselves and there could be a genetic link (hmm....).  I believe it.  Thousands of parents with ASD kiddos have discovered this lovely little white pill to help their children sleep.  And it really makes the difference between good days and bad days and really really bad days.  I honestly don't know where I'd be without it. However....... While it helps them get to sleep (usually within a half hour) it does NOT help keep them asleep.  That's where our trouble is.

I keep telling myself that someday he'll sleep. Someday. It's like when you have a baby and they wake every 4 hours. Someday, they sleep through the night and it is the best night of your life.