That Sucks!

I know I sound like a teenager. And this post isn't really about autism (well, maybe a bit).

I'm trying to find someone/some people to watch my kids tonight. I've been trying for a week. First my respite worker cancelled the whole week (thus Patrick went to Beavers alone as reported in previous post). I called my mom....a short but sweet "no". And my next predicament is this.

I often split them up on purpose when asking for help. Wouldn't want to overload one poor individual with BOTH of them very often. I believe this would decrease the offers of assistance. I have one more phone call to make and I'm not hopeful.

So this is a vent, this is my whinging and complaining about the fact that I missed my parent's council meeting Thursday and I'll be keeping my bottom firmly planted at home tonight.

Missing hubby!

Around here, we often measure success in little baby steps. Sometimes that makes it more frustrating. And sometimes a particular success is sweeter because of this scale of measurement.

Our respite/special needs worker had to cancel this week. This did leave me hanging a bit (I won't be able to attend a parent's council meeting tonight) but it also provided us with an interesting opportuntity.

Last night, I took Patrick to Beavers planning full well to stay and take the place of his worker. Instead, with a sudden flash of insight, I walked up to a leader, said V isn't here today but I'm sure you'll be fine, had a bit of laugh about how some of the other boys are worse behaved than my son, and left!!! My heart was pounding. I was so proud that in that conversation I wasn't at all appologetic. I pay for him to go to Beavers. They have 4-5 leaders. Surely this would be fine, right? Right?

You bet your bottom dollar it was all right. I asked the leader afterwards how it went. He has ALWAYS been supportive and has actually suggested before in the past that I might want to leave him for a certain activity. He said, and I quote, "He didn't need any more attention than any of the other boys. He was just fine." (Notice that he didn't say he wasn't 'acting autistic' or that he was 'normal' or anything like that.)

It was so hard to leave him but I'm so glad I gave us both this opportunity to experience success. This won't be a weekly thing just yet but how proud am I that occasionally, if we really needed to, we could allow him this little bit of independance.

Hubby's been home

For the past week. 'Nuff said.

He left this morning so I'll be back to my regular bloggy self tomorrow. :)

Adding or Extinguishing

I hear a lot about extinguishing traits. From some parents it's all about getting rid of the autism and for autistic bloggers it seems to be about making sure we don't extinguish what is uniquely autism.

So I wonder. Do I add or do I extinguish?

Patrick never did flap. It's one of those things that everyone assumes your child will do. I've even been told that because he doesn't flap, he isn't autistic. But remembering back, Patrick did do this one thing. He used to tap his thumb and first finger together. Sometimes he would just be standing there tapping. We thought it was interesting of course. But in the same way his climbing was interesting, or his brother's latest drawing was interesting. It wasn't until years later that I realized this could be considered a repetative behaviour. Eventually he just stopped doing it...perhaps when his ability to communicate made life easier for him? I wonder if we'd had the diagnosis at a younger age if I would have been tempted to extinguish this?

Patrick's only speech at a young age was echolalia. Absolutely nothing came uniquely from him. So we took him to speech therapy, used some signs, made him use words for requests, etc. Interestingly enough, early on we decided not to try and decrease the echolalia. The result? The sum total of his speech increased. So now he does converse reasonably well, but he also still enjoys repeating things over and over. No conclusion, just an interesting observation. He certainly has a fantastic memory. I wonder how that will serve him in the future?

So, does a parent focus on extinguishing behaviours? I'm not referring to Self Injury here. But simple things that bring attention to your child for being different? Is there a cost to this? How do we decide what to keep and what to get rid of? Is it a value judgment?

My overall philosophy in this parenting journey has been to try and add to my children's abilities. It seems, to me anyway, that when positive things like communication, education, and safety are added to a child's life the need to extinguish behaviours diminishes.

No answers here. Just a lot of questions.

If at first you don't succeed....

My boys love to play outside. Which is wonderful and healthy, of course. The problem is the stress that it causes inside my head. I have to keep track of Patrick at all times and on four acres of land that can be difficult. I'm ALWAYS worried about losing him.

Today we went outside. I have a very sore back and am tired because Patrick was up with a nosebleed last night. But they really wanted to go out and play in this beautiful weather we've been having. So, I said yes.

Out we go. I find myself a spot in semi-shade...completely aware that I'll be up and running within seconds....minutes....hmmmm, this is different. They're sticking together. They're playing where I can see them. They...they....I can't believe it. We can sit outside and enjoy the day together.

...try, try again!

Do I have to?

No, I havn't been ignoring my four? faithful readers. :) I've been having a lot of trouble getting into blogger, and I'm not sure but I think it might be my lovely dial up connection.

But I'm back! No please, hold the applause. *grin*

So, the title of this post. Do I have to?

Last week I was talking to a woman, a mom at my son's school, who it turns out works with autistic children. At one point in the conversation I started talking about autistic adults, and how much they've helped me. She made a comment a minute later about how nice it was to see a child "come out of that shell" or "join the real world". It made me mad. Damn mad. But ya know what? I just didn't feel like having that conversation on that particular day. I was already emotionally stretched thin. I had already tried to educate her on several other different topics, like eye contact and how autistic kids grow up and learn just as 'regular' kids do.

So I didn't say anything. Good mom, bad advocate? Do we always have to correct every misconception? Offer information on every subject?

In retrospect, I wish I had spoken. This is a woman who's working one on one with a little autistic girl (I'm assuming ABAish stuff) and I really really don't want her to think that this little girl is an empty shell, or lost in a different world.

She's right here in this world, just like you and me, and all of our children.

Adult Autistics

pp

I love listening to and talking to adult autistics. I love even more telling those around me that certain pieces of insight or information came from an autistic adult. It makes me feel a bit more secure in the decisions I make for my son.

My son will one day be an autistic adult. I can't wait to hear what he has to say then (that is not to say I don't enjoy hearing what he has to say as a child). I worry about the choices I make...but then most parents do, don't they?

My choice right now. Patrick has just asked if I would read him a story. It's about wibbly wobbly teeth and he has two of them.

I'll finish this entry later. Right now I'm going to read to my son. (And thoroughly enjoy it!)

(pp's added by Patrick, who often feels like there aren't enough P's in the world...another post perhaps?)

That Sibling Thing

It's been coming for a while now. Slowly but surely he's noticed.


He has a brother! Yep, ladies and gentlemen, there is another person in the house. Did I mention it's a person to chase, scream at (and with), wrestle, jump on, and all around cause havoc with?

*sigh*

I remember the years when he didn't know his older brother even existed. And while I've always wanted them to have a full sibling relationship...well, let's just say I didn't quite know what I was wishing for. To make things more exciting, this new "play together" stuff has caused my older son to behave in ways he never has before.

So, before this realization slowly hit, big brother had all his rules regarding his little brother and little brother just was himself. Now little brother is having to learn all these new rules about having a sibling (an older sibling)...at age 6.

To clarify, Patrick has always had rules. Tough ones. But they've never involved older brother because, well, older brother was kind of on the outside.

Now I'm wondering if there's any way to possibly split them up, even for 10 minutes, so my ears don't explode. If noise levels are any indication, this new dynamic is being enjoyed fully by both boys.