Adult Autistics

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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.

House on Autism

I avoid autism tv as a general rule. Didn't want to watch Oprah. When I hear about a show running an episode about autism I tend to ignore it. I never tune in to watch on purpose.

So I happen to be flipping channels tonight when I landed on House. I like watching House although I watch very little tv in general so I don't watch anything regularly. This was the episode where they're trying to figure out what's wrong with a patient who happens to be autistic.

What did I think? Well, the 'looking through the autistic boy's eyes' was kinda cheesy. I doubt that's what they see unless they need glasses. But the final scene took my breath away. Not because of it's absolute accuracy, but because of it's poignancy. House says something about how finding out your child will be cured is an 8. But these parents are clocking in at a 6.5 because they know what they have to go home to. Then the boy walks up to House and hands him his electronic device. He looks him straight in the eye for several long seconds. He walks back to his parents who grin like fools (who of us hasn't been there) and pat him on his back and they walk away holding hands. The other doctor looks at house and says "That's a 10".

Wow. I've explained to many people (strangers/family/friends) how sometimes the milestones seem sweeter when it seems like he has to work so hard for them and they're sometimes so long in coming. But this way of expressing it just sent tingles up my spine.

Happy Easter!

Also Happy "Older Brother's" Birthday. It's been quite a week.

Hubby was home and it was fabulous. The boys were really, really good at a family dinner that I hosted...for 24 people! I lost track of Patrick for short periods of time throughout the day. He was fine, I was fine, yay for us both. He even sat two tables away from me with some older children, stayed in his seat and ate some food (now I only gave him turkey and noodles so this was cheating, I'll admit).

I just kind of realized today that there's no school tomorrow. Hmmm. My brain may indeed be deteriorating. Since I can hear fighting as I'm typing I imagine it will be an interesting day.

Interrupted by nose bleed, third this week and he's never had them before now. Guess I'll be going to the pediatrician on Tuesday.

Adult Conversation

Due to a cataclysmic cosmic convergance (say that three times fast) I found myself without children Saturday night. I also found myself in reciept of an adult birthday party invitation.

Yes, this is a non-fiction account.

I went to a party! A lovely old friend from high school who I've recently been in contact with again was having a joint birthday party and I was invited. The grin on my face when I realized I would be able to go was a mile wide. So not only did I get to talk to adults, play games with adults, eat with adults and have great conversation (with said adults) but I got to spend time with a dear friend and wish her a proper happy birthday.

I will admit my sleep quotient has been disturbed. But, oh my, it was well worth it.

Lets see, details. She looked fabulous. There were lots of great munchies, including my preferred foods of canteloupe and strawberries. Yum. I rocked at the silly putty pictionary game we played...and laughed a lot. I won a wind up flipping cow figure that is keeping the kids occupied as we speak. I talked with perfect strangers who were so friendly. And I got to see my friend (and make sure she knew that I hoped we see each other again soon).

A perfect night. Amazing what can be dropped in your lap when you least expect it and most need it.

Sorry Again

Sorry to anyone who checks back here regularely and finds no new posts. We had March break so without the kids going to school I've been 'in demand' quite a bit for my time. My uncle passed away and I still havn't told my 8 yr old and so that's been tough. Now that they're back to school I'm hoping to have some time each morning even if it's just to write a tiny bit about the day.

Patrick has been wonderful about the new girl in his class. She cried almost the whole afternoon and Patrick said he was "dissapointed" because they couldn't sing their good afternoon song. He said he tried to ask her if she was ok and then explained to me that she didn't have a lot of words to talk to him but that it was ok for him to talk to her anyway. I think most of her issues with the crying stems from seperation anxiety (probably increased by the autism factor) and hopefully she'll settle in soon. Crying used to really set Patrick off but from the way he described her first day he's dealing with it pretty matter-of-factly. I meet her tomorrow so I'm hoping to get a better idea of what he needs to cope with after that.

He did, however, suggest that maybe she should stay home if she was missing her mommy that much. I explained the best I could about how it might take her some time to get used to school, the environment, the new people, missing her mom, etc. She's 6 and just starting school so I imagine it will be difficult at first.

I did get away to an grown-up party this weekend. So I'll tell about that in another post.

A follow up of yesterday's post

After reading the comments, I felt the need to come back and explain a bit.

Patrick, when he goes to Gr. 1, will still have an IPRC and an IEP. The LST will still be following him closely. But we've agreed to give him a chance to not have an EA following him all the time. He's not having any problems with reading or writing or speech. He's not getting any extra support for those things in school right now anyway. He gets pulled for OT and I'm not sure if he'll need it next year or not. If he needs it, he'll have it.

He still needs help with transitions which they're going to work into the schedule. They've agreed with me that he needs a dedicated teacher (just to keep an eye on him) on the school yard when he's out there. Obviously in the next months there will be discussions, negotiations, etc. with everyone involved including the Gr. 1 teacher. A level of direct support will be agreed upon with his best interests being the main focus. I have yet to have a discussion with the LST that doesn't start with her saying "What do you think Patrick needs?" or "I think it's in Patrick's best interest..." or "Patrick will definately need...."

It's not even that Patrick appears normal. We all know he's not. But he doesn't seem to need that full time one-on-one support that he's had the past two years. The only thing Patrick has different than any other child in his classroom is that an EA is in the class because of him. She's not even in the same area with him most of the time anymore. I've observed him in a group with other children and just the teacher. I think about this stuff every day. His needs, his progress, his support...It's not a decision I'm going into lightly.

A mentor...me?

Things have taken an interesting twist at Patrick's school. Well, in his class to be more precise.

A new student! A new special needs student! A new special needs student who will need to share Patrick's EA!!

Ok, after the initial shock I realized that this will probably be fine. At first I didn't know the diagnosis. I was a bit worried. Moreso about next year when they were planning to remove a lot of his support anyway. With my consent, Patrick is doing very well at this school. Now he may be in a Grade 1 class with this child and an EA. Not too sure how I'm feeling about that yet.

This girl starts tomorrow. Today I got some information. I guess after the mom came in and talked to the teacher she asked if she could call me.

Turns out, they're thinking an Autism diagnosis is where they're going. But, their doctor has only requested speech therapy (and has not even mentioned sending her for an evaluation for autism). The mom wants to talk to me to find out how we navigated the system, not only to get the diagnosis but for support and stuff. (This girl is 6, and they've been thinking they could 'do it' on their own but are now realizing they cannot. Looks like now the younger sibling might also be on the spectrum and they're quite lost).

Then, after having a few hours to think about all this, I realize that I KNOW this girl. She attempted to join preschool the year Patrick was there but her parents pulled her after two weeks. I will say that I 'labelled' her autistic the moment I met her. I'm not a doctor of course and I could be way wrong, but since we were going through the diagnosis stage I really recognized her issues as most likely having to do with autism.

So, I'm willing to talk to this mom. I really hope I can help. I also hope I can take away some of the desperation they must be feeling right now. And the first thing I'm going to tell her, after how to get the evaluation, is how to apply for respite.

Oh, and I'm praying for the teachers. This girl only says one word. It's going to be really hard to integrate her into this classroom. I think they will, and I hope they're successful, but it's going to be a long, hard road. The good news is that I know these teachers well and I know they're willing to meet the challenge.

Autism is...

Oh my. That's a loaded sentence fragment.

What she actually said was "So, how does Patrick show symptoms of autism" or something like that. I admit I was dumbfounded. I had absolutely no idea what to say.

Eventually some words stumbled out of my mouth.

"Um, well, he doesn't do change of routine very well."

What? Is that the understatement of the year? I guess it didn't sound very bad to her because she raised her eyebrows, obviously expecting more.

"Gee, I dunno, he still has some language problems and some processing problems, but I guess speech isn't as big a thing as before, he initiates conversation now. "

Nope, not only still not a winner, but also kind of skips over a long, arduous process of getting him to speak more than echolalia.

"I guess his biggest hurdle right now is social."

Aha, I got her. Social development is a big deal.

"How so?", she fires right back.

*sigh*

I ended with some feeble comment about how Patrick doesn't end at one spot and Autism doesn't begin at that same spot. I said something half-heartedly about how Patrick just is autistic and I'm afraid I just can't point out to you exactly how or why he is, it's just who he is. And a parting comment about how autism isn't just a list of 'issues' or 'manifestations' and it certainly isn't expressed only in the negative traits present in a given individual.