The Guilt of Good

I haven't posted here in a long time. It is because I feel guilty posting when things are good. They are. Good, really good. He is happy, he is confident. The powerful pull of personal growth has changed from a puberty monstrosity to a pleasing maturity. Was it the increase in fish oil capsules (his idea)? Was it the stepping up as we battled the system with his Nanna? Was it the loss of his Nanna? I do not know.

I think all those years of therapy and work may have had something to do with it. I think he is growing up. I think he is happy in his own skin.

I feel guilty posting of this when so many others are struggling. Then I remember. This is not wrong, it is not boasting, it is hope.

Things do change. Sometimes for the better. Usually when you least expect it.

also blogs at Meaninless Meandering from a Madmother

The undiagnosed Aspie one....

We walked into the paedeatricians office that first time and sat down to discuss our son. The school had told us, "we don't acknowledge the school psychologists assessment of Aspergers as true until he also sees a Paed for an official diagnoses". 'How odd' we thought, but finally we had found one. He looked over the tests, he asked some questions, he diagnosed him there and then.

Aspergers Syndrome.

"Has anyone else in the family been diagnosed?" the Paed asked.

"Pardon?", we replied still gobsmacked by the affirmative of a minute ago and puzzled as to this new question presented to us.

"Does anyone in the family have Autism or Aspergers? is there a family history?"

"Um, no...not that we know of. Not diagnosed" we replied, puzzled as to where this was going.

"No-one with any strange characteristics etc?" the Paed continued.

"nope, not that we can think of" we replied as the conversation then turned in another direction.

That was over a year ago. A small, non-consequential part of a larger conversation that should have been lost in the fuzzy parts on the edge of my memories as being useless knowledge to keep but instead lodged itself there in the 'important things to remember' part of my brain.

As the year progressed, as I learnt more about Aspergers and how to help my son that one little memory would continue to pop up over and over again. Is it heriditary? I don't believe so. Is it likely that someone else has Aspergers in the family? it is a probable possibility.

Who?

Day to day life is so hectic that I find chasing after my children and dealing with my Aspie sons therapies that my life is full to the brim. Perhaps I don't spend enough attention, perhaps I missed all the signs, but then there was one family member who began to jump up and sit in the chair right next to that little question posed in my memory oh so long ago as a definite possibility of having Aspergers too.

We talked about it, we thought about maybe getting an official diagnoses, something which has not occured, something which I cannot push on that person. As my sons therapies go on, as my patience wears thinner, I find my tolerance wears even thinner!

The puzzle pieces they began to click together and I wonder. Can you say that someone has Aspergers even if they do not have a diagnosis? is it real only when you have that piece of paper that says it's so? I know this is something that has been debated over a long time by others before me and within the Autism community.

This other person, there is no doubt has Aspergers. He has the same traits as my son. He believes everything that happens is because of or a result of something he has done. He is incredibly intrinsical and has many of the traits. He is a living, breathing, bigger version of my son, almost a direct carbon copy. His story is not mine to tell.

Why even mention it then? because I am struggling to cope with all that is coming at me from both ends of the spectrum here right now. Spending hundreds on therapies for my son of which he works hard at, only to see that the bigger one continues to display those behaviours we are attempting to change in my son, with no care to change them himself. As that bigger one is someone my son upholds as an idol, I am fighting a battle to prove just why he needs to change those behaviours himself. Being spoken to with a voice of contempt and disgust when things are not going the way they deem it to be, tag teaming their times to do this, one after the other. Angry outbursts, expletives thrown out at several intervals when frustrations brew over, when they don't know how to handle or what to do with their emotions.

I am their safe place, their island on which to stand and let it all out because they believe that it is only with me they can do this. That I get it, that I wont leave them if they do. They put their mask on 'out there' and they conform 'out there' but on my island they don't need to. I can handle one....but two is often too much. I am human, it is breaking me.

So what do I do? how can I help someone who doesn't believe they need it, but so desperately wants life to continue the way it always has despite the fact that it just cannot? How? how? how? Yes, right here where I am...Aspergers can definitely definitely SUCK! :(

Seeking an Expert

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... ME.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....

something.

Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind of enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

Leah blogs at fruitypebblesfordinner.blogspot.com

Desperate

OK, so I haven't seen this blog for a while.  Living in my wonderful, detached bubble.  But it builds, and here I am again, feeling the pain of reality.

It was a pretty normal day, except He (14) hadn't taken his meds in the morning.  I didn't notice until it was too late.  (Am I going to need to make sure he takes them for the rest of his life?)  Life without Buspar just really sucks.  The "episode" was intense.  I don't even recall what it was about.  But It was enough for me to find a minute later to google "asperger therapeutic boarding school".

Seriously.

And at the time, I was totally calm and serious about it.  I mentioned it to hubby.  "I can't believe you would even think that."  At the time, I was like, well--why wouldn't I?  Seemed good to me.  In a school with other kids who understand and are also lonely and have no friends, living with them, exercising with them, food monitored and cooked for them.  Being taught things that maybe would be more "acceptable" because they weren't being taught by me or Dad.  Sounded GREAT!

Then yesterday, it hits me so blinkin' hard.  Failure.  Not good enough.  How could I relinquish my responsibilities to someone else?  I don't really want him to go.  I am just completely freaked out that the amount he needs to learn to function as a human is way too much for me to handle.

Has anyone else been tempted or actually sent their kids away?  (It just would have been a sememster or 2.)  I did meet one boy who had gone away for 2 years, not very far from home, and had come back having learned so much.  Maybe it's the contrast and maturity that you miss that makes it seem so??  Thoughts?

 

autism sucks: Facebook and the Aspergers Teen

http://confessionsofanaspergersmom.blogspot.com/2010/08/facebook-and-autisic-teen.html

Facebook and the Aspergers Teen

I have to be one of those moms who noses around in her sons business.  I try to do it discreetly so I don't totally piss him off. Now that school has started and he already starting to show some obsessive tendencies towards a couple of friends.  I feel it's in his best interest for me to know what's going on.  I periodically check in on his "facebook" page to make sure that he is staying appropriate.  Sometimes, he comes out of his room suddenly angry and I know that something has happened with a friend online.  If he won't talk to me, I trace his "facebook" steps to see what is going on.

Recently he reconnected with a friend "M" that he has know since kindergarten.  She was always very nice to him throughout elementary school.  They parted ways when he went to another middle school, but have met up again in the same high school.  She has a boyfriend and has made it clear that she would love to be good "friends" with my son.  He says he accepts that, and has even gone to church with "M" and her boyfriend.  They are Christian kids who seem to be trying to be inclusive with my son, despite some of his strange behaviors. He has started to talk about them a lot. I know that he is jealous of their relationship.  Since he has no edit button, he also made that clear to both of them.  Still, they generously let them hang out with their crowd at school.

Last night as the evening was winding down, instinctively I decided to take a peek at what he was doing on  facebook.  I found a chat log going.  Some dude was telling "K" to back off from "M" and her boyfriend's relationship.  "K" responded by ripping this guy a new one with every expletive he could think of. The guys language was teasing and taunting, with lot's of "ha-ha's", but no cursing.  Other friends chimed in on the conversation, but no one was out and out rude.  Still K-was cursing up a storm!  He must have been so proud of his curse word vocabulary.  Personally, I think cursing to express yourself shows a real lack of imagination and thought.  In my opinion it makes you look dumb! Especially when others around you aren't talking like that.


I've read in Ross Green, Ph.D.'s book "The Explosive Child"  which basically says, for children with Aspergers, cursing is like barking when you step on a dogs tale.  They're hurt or upset and they feel there is no other way to let you know just how much.  It's like an exclamation point for them. And of course since "K" lacks perspective, he doesn't think about how offensive it is to others who don't use that kind of language.  Believe it or not, none of the kids on the chat responded or used one iota of fowl language.   


It was really getting out of hand so I had to step into his room and as gently as possible said to him, "Son -I think you should really rethink the kind of language you're using on facebook.  I noticed that even though some of the boys are being rude, not one of them is using that kind of language. Not one.  Don't you think it makes you look a little weird that you're the ONLY ONE talking that way?"


"I don't care!"
"I think you should apologize because not only that boy is reading this but there are girls, and others who want to be your friends who are reading it, and may be offended by it."
"They don't care! I'm not apologizing to that jerk!"
"Yeah...well I understand how you feel, you may be making yourself bad."
\
He didn't agree to apologize.  I left the room.  Soon after he posted:

"I'm deleting my facebook account.  I can't be friends with anyone. This is not a joke.  I'm not coming back. And I'm never coming back to school either.  I'm just going to juvenille hall. This will be the last time you see me."

That was the sympathy card.  It worked...there were 14 replies -all of them positive.  Here are just a few:
 
"Dude what's wrong? Don't talk be talking about yourself like that! If you ever need someone to talk to...text me anytime before 10:30.  Then I have to turn my phone off."
"I'm here for you buddy!" (from a female...a cheerleader no less).

"Dude...don't worry about a girlfriend.  If you really want one, just be friends with them.  Almost every relationship starts by being friends. And if you EVER need someone to talk to I've got your back! Just get your schoolwork done, and let everything fall into place. God has a plan for evryone! Let his light shine through you."
"Don't delete it!"
"I'm here for ya!" (from another cheerleader!)
I was so excited, I couldn't help myself...I chimed in, "Wow! You are so blessed to have friends with such good advice!"  Three people "liked" my comment.

Reading these posts brought tears to my eyes.  I could just see God all over that page and in the hearts of those young people.  I knew at that moment that God has not forgotten us.  He is answering my prayers.

When I go in to kiss him goodnight I say, "Dude! do you know how blessed you are?! You have some real friends out there who really care about you.  Can you try to focus on them? I mean, you've got cheerleaders who are in your corner!  That puts you in a great place! Can you try to focus on that?"

And that was the prayer I prayed over him as he drifted off to sleep.

To read more of my stories check out my personal blog - http://confessionsofanaspergersmom.blogspot.com/