BMBD Disorder

Bad Mommy, Bad Daddy - I read this in "Touched by a Child." I is SO what Bill and I talk about with some people who feel their child is a candidate for Special Ed - but they really don't have a label - nor do they want to. They want services but they don't want the sigma that comes with those services. CRACKS me up. Pisses me off because these people are usually the ones that are NEVER happy with ANYTHING they're getting from the school. And they certainly don't work WITH the team. I have many people in circles I run with that do this. I just want to shake them. Not only do they make it hard for the rest of us - they really make it hard for their kids. Labels are part of it. No, they don't DEFINE your child - they DESCRIBE the type of treatment or services that your child will receive or is eligible for. Labels don't bother me in the least. *I* know who *I* am - I know who S is and I know to Whom we belong. Whatever *people* want to call us - doesn't mean anything.

"What I think the political correctness debate is about is the power to be able to define. The definers want the power to name. And the defined are now taking that power away from them." Ruthe Stover

Again, what does it really matter. I remember being very happy when we got S's "label". Because for once when I uttered the word autism people would understand. Do they "get" S from that word - do they see the total frustration we go through or the utter joy? No, but would they ever? No. But they DO get that she needs extra patience, she's not trying to do bad. So, the label works.

Some Interesting Info:

"My son sees the world differently than us. Thus he acts differently. Differences in people can be inspirational and joyful. Despite his challenges that cause him daily frustration, he smiles and teaches us something everyday. He figures out a way to live in our world and shows us to much love. I love that difference." -Donna Rosuck.

I've been doing a lot of research for our Walk Now letter and I'm finding that there is a whole sub-culture of autistic people who don't want to be cured. They see themselves as just people who are different. They consider themselves just one of the minorities in the world. Kind of like "leftys" I guess. I found some of their blogs very interesting and I can kind of see their point. S's autism is part of her. And she is the happiest kid I know. But I'd still like to be able to hear her thoughts. Maybe Walk Now is a selfish thing on our part. I don't know.

Can You Remember????

I was doing some research for quotes and definitions for Autism for a Walk Now brochure we're sending and it occurred to me that I can't remember a time when I didn't *know* autism. I was trying to remember any ideas or feelings I had about autism before I was so abruptly introduced to it. I can't think of a one. I know I had heard of it before - I just can't come up with anything.

It has just saturated my total exsistance.

Sing It!!!

I wonder if I'm the only one who can listen to a certain song and INSTANTLY be transported back to what ever was going on at that time. I can even break out crying if that's what I was doing. Memories come flooding back complete with smells. The rest of the world prob does too right? It's just so freaky. I wonder if they ever thought about using that with hypnosis when people can't remember stuff. I don't know.

Ok, really ROUGH day! I want to go back to Bloomington!!! Dang, why doesn't it work the way it made SO much sense when I was taking notes??!!!! Speaking of Bloomington - this was trip #3 and I still have to say I really think I would have done really well on a 4 year campus. I love walking around and finding your way to classes.

I did manage to get a handle on the laundry today and so tomorrow we start with actual cleaning. I want to go back!!!!!!

Mommy class - TOOOOO Short!

OMG - did we have a good time or what??!!! It's WAY tooooo short thought. We had to have laughed for a solid 3 hours! L,M,myself and a new girl - Carrie went on Thurs afternoon. We checked in - sat around and gabbed - went to see Daddy's Little Girls (GREAT flick) then to The Outback - flirted with Maurice and then to Panera's for hot choc - back up to the room - talk, talk, talk till 11 - up at 5:30 and to the conference. AWESOME conference. I just LOVE this meet up. It so fills me up and renews my "mommy spirit".

I did miss the chillen'. B did a GREAT job keeping it all together - and the best part - when I got home he told me he can't believe I do the stuff I do - that it's SUCH a pain and that he doesn't want to do it again. I think that might be the sweetest thing he's said to me in a LONG time.

S had her play on Friday - she did very well - played her drum and sat SO well through the whole thing. B taped the whole thing for me. It was really cute.

L was in full craziness over our get out. She is SO funny. I so love spending time with her and M.

I got presents for everyone - they were all pleased. The house is a wreck again - need to really clean OUT and throw stuff away.

Got a Sickie??

Himself was up all night with a fever. Not severe - about 101. But he was really having some WILD dreams. He slept with us for a while and then I went to his room with him. He was SO hot to the touch. At one point he woke up crying "I want to sit by someone". Poor guy. He said he felt better this morning. I sent him to K's only because I had morning appts and Daddy was to pick him up at 10:30 and then make the big decision whether he should go to school or not.

S kept saying "I not sick, I go to school, I don't get sick". There was no way SHE was staying home. Just so everyone knew. That girl......

J and I were accompianed by Rexy last night. He had to make sure he knew all that was going on. Got up on J's picnic table and slept there till I went back to bed and then followed me into my room. What is it with our animals - they're getting to be as weird as my sister's.

Debate

S is practicing her answer to why do you think you should be VP of the class? "Because I am super nice." :-) Is that not cute or what??!!!

Our bud Kyle isn't doing too well. We're praying he doesn't have to go into surgery again.

We did a devotion tonight about freinds and when I described my best friend J says "too easy - it's aunt L". His friend is Jonathon and Juan. S's is J. Isn't that sweet.?

You should see the boy swim. After the lessons he goes over to the other pool and swims - I watched him tonight and he can back float all by himself for almost the length of the pool. He won't do it in front of the teacher,though - and I'm not real sure why. I'm wondering if it's because he knows he'll "move up" and he doesn't want to do that. I don't know, you can never tell about that boy.

Es'panol?

We had J's 2 friends (J&J) from down the street over last night. Juan is the oldest at 10 - and we were talking to him about him learning English in school and suggested that he could teach J how to speak Spanish. "You mean he doesn't know how?" He was amazed. TOO cute! I guess everything IS relative! :-)

S suggested to us on Saturday night that when she called Daddy "Mommy" that she was only "teasing"!!!!! She's not supposed to get that concept!!!

J and I and L&J went to see Peter Pan, the ballet on Saturday. It was a lot of fun. But no, the boys are NOT going to be ballet dancers - so don't ask. That is pretty much the attitude we got when we asked. They really did enjoy it though. They were totally silent through it and sat with mouths hanging open.

Aunt J won the lip sync contest again this year. My father is now trash talking the competition. Telling them that "his daughter is going to kick their a..) Namely Odd Todd. ;-) I can just see that.

We went to the VVEEF fundraiser this weekend. What a good time!!! Margie and I had a really nice talk. Lots of "politicians" (I use that word loosely). I can't get over how people think they're "all that" because they are "running" for office - or because they hold office. I just shake my head. You know, how they say that the thing you fear the most will end up looking VERY good to your children? Well, my kids will be 1. Hollywood celebrities or 2. Politicians. Are they all not the scum of the earth? I know, that's very prejudice on my part - but I can't help myself. Those two categories of people just turn my stomach. You can't believe what either group says. They both have the same priorities (fame and money - for themselves) and they are the MOST out of touch people on the earth. I just so have to laugh.

I was informed by one of these people running for office that he has known MY nephew forever. Hmmm, I said - isn't that interesting - *I* have too!!! Ugghhh. Why is it that people get such a kick out of telling another person how much they know their family better than the person does. It's just funny. I've witnessed this happen in other people's families too.

It's CRAZY at work today. It's like everyone who got up on the wrong side of the bed have called and created a problem. And mostly silly problems where they are mistaken. Example: One lady said her tax return went from 95 to 160. When I actually looked it up it only went from 155 to 160!!! Convenient memory. :-) But she was sure nasty with me.

It certainly takes all kinds.

Saddle Up

Pardon me, while I put a saddle on my horse (my high horse).

Uggghhh - I just heard a radio ad about how Ditka has auctioned off his ring (or one of - not quite sure) for retired football players!!!! Seems there's some that aren't quite making it. Ok, not to sound like a heartless soul but PAAALEEEASEEEE! Give me a FREAKING break!!! There are SO many more people in REAL need. Solders, homeless, - I just don't recall seeing any old linebackers in the soup line at the shelter! Did the lil' pudems squander all his money on frivolous things and not use it wisely? I'm sorry - I LOVE football but I feel just NO sympathy for someone who didn't put money aside from all the money and glory that was GIVEN to you. God, gives you the ability to play football and if that is what you decide to do then you better damn well use it correctly. I know everything is relative - but I don't believe that their "need" is like other's. And if it is - too bad - they did it to themselves. With many gifts comes MUCH responsibility!!! Dang - that just ticks me off. And no, maybe they didn't get paid as much as players now a days but they did get paid and they "heard the song" - now it's time to pay the piper! After all the press about disabled vets and how they live - I'm just shocked to hear this. Not to mention Katrina victims, the tornadoes lately - there's so much need out there. I just shake my head.

Siblings

What Siblings Would Like Parents and Service Providers to Know:
If thy are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.
Sibs share many of the concerns that parents of children with spec. needs experience, including isolation, a need for information, guilt, concerns about the future, and care giving demands. They also face issues that are uniquely theirs - resentment, peer issues, embarrassment and pressure to achieve.
1. I have a right to my own life.
2. Acknowledge my concerns.
3. Don't set unrealistic high expectations for me and help me not to feel I have to compensate for my sib.
4. Expect typical behavior - teasing name-calling, arguing and other forms of conflict are common among brothers and sisters - even when one has spec. needs.
5. Expect my sib to live as independently as possible.
6. I have the right to a safe environment.
7. Give me opportunities to meet other kids who have sibs with spec needs.
8. Give me as much info about my sibling's spec need as I want.
9. Bring me into the "loop" about my sibling's future.
10. Communicate with me and let me communicate with you.
11. Give me one on one time with you.
12. Celebrate my achievements and milestones.
13. Your perspective is more important than the actual disability.
14. Actively reach out to me.
15. Learn more about my life as a sibling.
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I've been reading alot about this lately. I've always said that J will NEVER be "typical" . I've heard so much advice from "family" about how to raise him and what to let him get away with and such. But truth is - he's as spec needs as she is. No one in our families have raised 1. a special needs child and 2. a special needs sibling. He IS special and "typical" discipline doesn't work on him anymore than it works on her. He's a mental battle and she's a physical one.
Right now I walk the tight rope of giving him info about her - letting him know that whatever his feelings are that they are OK - but also not creating a sib who treats her "different". Right now he just sees her as S - his sister. But the time is coming all too soon where he will realize she has some issues. I like the fact that he does push her to be like anyone else but I also want to give him a safe place to verbalize his feelings. Dang, this parenting stuff really blows sometimes.
Right now they both get about the same attention. But it will soon be more one sided. Even though I wonder just how J wouldn't rec. attention. He is just "on" all the time. :-)
He just cracks me up sometimes. I do hope I can maneuver this rope and end up with everyone being OK with 1. who they are 2. who each other is 3. who we (B& I) are.

The Housewives

Ok, did anyone see Desperate Housewives last night? The dialog between Lynette (the mom with the 3 boys and one girl) and her husband - he had hired a limo to pick her up as a surprise, drop her off somewhere kind of desolate and then he was going to pick her up in a horse and carriage. He thought he had cancelled the limo (she was exhausted and didn't want to go) but the limo came and dropped her off - he, of course, didn't pick her up because he thought it was all cancelled..... She waits and waits and waits out in the cold and all alone...... He gets word from the limo driver that no, it wasn't canceled and Lynnette was out there - he speeds to her - she, of course, is NOT happy - he says "but how excited the kids will be when they find out you saw a real, live coyote." I thought I would split a gut!!!! OMG - that's something B would SO say. God, that was funny.

We tried a weekend schedule this weekend. It went fairly well. Esp Saturday - we really kept on schedule and things were good with S. Sunday was a little fowled up - it's hard to schedule all the weekend. But she did very well. We're still working on the "nice talk". She's SO obnoxious.

I'm going to try and find some pictures so I can illustrate my social story I made for her about "nice words". I may just borrow the pictures from her other books.

J got a little prize out of the machine this weekend - it was a tiny little book. He called it a "diarrhea" (diary) :-) Oh, I lost it. It was SO funny. Then he says "maybe I'll sell it." "What? How will you sell it" "you know, on ebay." Oh, he is SO his father!

My Little Cracked Pot

An elderly woman had two large pots, each hung on the ends of a pole with she carried across her neck.
One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.
At the end of the long walk from the stream to the house, the cracked pot arrived only half full.
For a full two years this went on daily, with the woman bringing home only one and a half pots of water.
Of course, the perfect pot was proud of it's accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.
After 2 years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. "I am ashamed of myself, because this crack in my side causes water to lead out all the way back to your house."
The old woman smiled, "Did you notice that there are flowers on your side of the bath, but not on the other pot's side?"
"That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them."
"For 2 years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house."
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Do you notice the woman never just fills the pot half way? Everyday she fills him to the top. This story spoke to me about S. That though she's not "perfect" - she has her own special light. She "waters" my life. All the lives that she touches. And I like to think about how I should never be ok with filling her half full. I should always fill her and let the water fall where it may.