Been Busy: Advocating Against Abuse of Restraint and Seclusion

I haven't been writing much over the months, but I have been rather busy over here.

Bubba and I went to Washington DC this past week to attend a press conference on newly introduced legislation on the issue of seclusion and restraint. While it was my second trip to DC this year, it was Bubba's first that he can remember (we also visited as a family when he was almost 2).

My favorite part of the trip was when Bubba met Congressmen Miller:

Congressman Miller: Can I introduce myself to you?

Bubba, not looking up: Nooope!

Me: Secret forehead slap

I have been advocating on the issue of misuse of seclusion and restraint for years, as it personally affected our family. While my children are now safe (we homeschool), many MANY are not. Much of the public believes that child abuse is not tolerated in public schools, and that violators could be prosecuted. THIS IS NOT TRUE. Currently there is NO LEGAL recourse if your child is placed in a seclusion room or restrained. In many states, including Missouri, corporal punishment is allowed and Child Protective Services does not have authority to investigate. You'd think common sense would prevail, but unfortunately, children--especially those with disabilities--are being mistreated and abused everyday in our schools. I encourage you to look into the situation.

My Boys are THOSE Kinda People

They dress up and go to Renaissance Faires. Lord help me. What did I expect, their Grandma is a wench (really, she is, at the Faire).

Thankfully Aunt M is weird too, so she took them and I didn't hafta. She also made their costumes and taught them all sorts of things I now have to listen about....









More pictures here.

Does your library have this stuff?

We are fans of our local library. Always have been. For the past year or so, I've been downloading audio books and recently I realized we can download e-books. And it's all free. Bubba already spent 20 minutes reading this one. And I've got me eye on books like this. Seriously, if the boys say "I want to know more about sharks" I can show them a pretty pdf rather than a web page. Now don't get me wrong, I like anything where I can find information, but sometimes those web pages have too much to weed through.

Now, I am a big fan of THE BOOK, so you won't see me relying solely on "E" anything when it comes to "reading." We have hundreds of books, but can't have every single one...so this a nice resource. Especially if it's snowy outside and your kids want to know more about dinosaurs or whatever RIGHT NOW. And I can't say "No" to learning, even if it's at 11:30 PM. So this is good, because the library would be closed.

So if you haven't yet, find out if your library does something similar!

A lot can happen in a week

I apologize for being quiet here... but wow, what a week!

Movement
Last week I gave a presentation to The Missouri Planning Council for Developmental Disabilities - Education Committee. The committee voted to bring the issue in front of the council and the council (hopefully) is expected to approve "supporting" legislation in the restraint and seclusion issue. Within a matter of days, a bill is being drafted and there are two potential sponsors (Senators). I have been working like crazy updating the site I started a year ago. I have been advocating through e-mail and on the phone more than I have since...well, if you have children with disabilities you are always on the phone or e-mailing someone about something trying to resolve a problem, prevent something, or hold someone accountable, or get something to change! Check out the site and give me your feedback. It's a blog, so I'm limited...but if you are smart like that, help me fix things like making the blog let me put thing in the order I want them as opposed to chronologically. Grrr. I can't devote much time on this since I'm spending time on the actual issue.

I am going to DC in March to further educate myself on and advocate about this issue (and I get to meet Stimey!). I am going to the State capitol in February and March.

Work
I have suspended my freelance work until late Spring so that I can focus on this issue (and um a "schooling" issue I have been purposely vague about...). I am scared shitless. Like really scared. It's not like I made a ton, but it was supplemental income that we live on month to month.

But, because things just work out sometimes, we found out today that Hubby is moving to a store 5 minutes away (right now he has about a 60-90 minute commute (round trip). This alone will save us $300 or more a month in gas (and food costs since Hubby so often 'forgets' to bring his lunch!). not to mention that he can come home during lunch when he wants or go to meetings/appointments for the boys...and we can drop by and grace him with our presence when we are running around. And for someone as anxiety ridden as myself, it's good to know he is minutes away in case there is any emergency.

So there you have it.

Another Train Down...

We did one holiday train display right after Thanksgiving, and did our second one today. Only one more train display to go!

This guy has this entire train display in his front yard with multilevel tracks, tons of "scenes", and it's free. Most people mosey away happy after a few minutes, but us? We (along with some friends of ours) are there for at least 30 minutes
(would be longer if it were up to all of our boys), and the boys do not hide their enthusiasm.

Bubba was a little upset that the Coca-Cola train with the polar bears wasn't running today (apparently the owner had to simplify because he was having some medical tests done and had to have a friend help with the train system) but Mooser was ecstatic that the trolley was on the line. Since this was our third year doing this, I managed to grab a business card so that we can send the gentleman a card with a donation.

FYI, for local folks.

Cotton-Eye Bubba?

No, even though it is possible that Bubba has pink eye, this post is not about that.

Bubba and Moosie received toy trucks that play music. Bubba loves these types of toys. He will play the music over and over and over until he nails it. And now that he has discovered the powers of YouTube, he will find the song and then listen to and analyze every version he can locate. His final step appears to be his performance/reenactment, complete with his own costume design.

For those of you who thought you couldn't hear that song even one more time on Christmas eve...believe me if I can hear it 30,000 times, clap to it, and dance to it, and still be smiling, then so can you!

I only had a little room left on my chip, so I just caught a snippet...so you are lucky...this time! Notice Mooser tapping his toes trying not to call too much attention to himself. He also picked out his costume.

And seriously, look at my boys fingers on that fake guitar. I think he watched the YouTube videos so much he memorized the guitar pattern. He also picked up some dance moves that did not get captured. My boy has rhythm but he can't dance.

Annual Fake Gingerbread Construction

Every holiday season, we do something with icing. Every 6 months after that, I scrape icing off of the floor and table and try to eradicate pulverized graham crackers and mashed jelly beans from the carpet.

We were all in a half-ass mood this year, but we still had fun eating the icing and candy. Mmmmmmmmm.... nothing's better than icing on graham crackers.

Guitar Hero

We expose the boys to a lot music, which is why you see videos of them moving along to Johnny Cash , Nickleback, Alan Jackson, and...

ZZ Top.



I know they are my children and all, but I can't watch Bubba play his Gee-tar without beaming. And notice Mooser trying to 'take a bow' at the beginning rather than at the end? Oh, don't tell anyone that I let my children stand on our coffee table (an old handmade chest). Well, it does make a pretty awesome stage.

It's the most wonderful time of the year, Bells are ringing, Children are screaming...

Last Friday, me and the boys went to ring the bell for the Salvation Army at a local grocery store. It was cold. Damn cold. I tried to explain why we were ringing the bell. I tried to explain the idea of collecting donations, what the donations were for, and our responsibility to do community service. I tried to explain that there are people who need help and people who may be not have a place to live or food to eat. I tried to relate it to our experiences and why we can't just take, but we also must give.

Well, I failed miserably. After 10 minutes the boys wanted to collect donations for themselves because they were cold and they were hungry. To them, it made perfect sense. How many times does mommy say "No, we can't buy that because I don't have any money."

So yesterday we were signed up to ring the bell again. Since the first time didn't go so well and I spent most of my time trying to keep the boys from playing with the automatic doors and running out into the parking lot, I decided to do what any self-respecting mother trying to teach her kids about civic responsibility in the freezing cold would do-- I bribed them.

So I told them if they said "Merry Christmas" to 100 people, they would get a prize. So they both rang the bell, said "Merry Christmas," and every so often remembered to say "Thank You!" when people donated. Of course every minute Mooser asked "We done yet? Getta pwizha?" and Bubba was more interested in trying to direct cart traffic or figuring out how the bell made a ringing sound more than anything else.




I am sure I have corrupted them in some irreversible way, but they made a lot of people smile. And they encouraged a lot of people to donate. And we lasted for the full 30 minutes without incident, which in itself is a Christmas miracle.

I got nothin'

A quick update as to why I am silent here:

1) Third grade sucks.
2) We are broke.
3) I am working, a lot.
4) Hubby is allergic to Sally (the cat).
5) I want to keep the cat, so I am cleaning, brushing, sanitizing, a lot.
6) Hubby is working 12 to 14 hours a day. (So who cares if he is allergic to the cat. He's NEVER home!)
7) I only have 2-3 hours a day to work without my kids at home, until Hubby gets home (at 9PM). (Thank goodness I have my mother-in-law and some respite funds to help me out when I think I am going to cave in. Unfortunately, when the boys are gone, there's still no resting.)
8) I am still fucking coughing (this is the fourth week I believe), and now I have a sharp pain in the right side of my chest when I breathe(I am hoping it is gas).
9) I am writing a lot of emails to teachers to document things, and planning for another IEP meeting (see number 1).
10) The one part of our basement floor we didn't need to replace when our kitchen pipes ruined our basement? Yeah, guess whose basement leaked RIGHT THERE thanks to Tropical Storm Ike? Yep, ours. The floor is ruined.(Yes, I am thankful we weren't in the actual hurricane and I know it could've been so much worse.)
11)My dad is staying hydrated and getting some nutrition, but he is having a lot of bad "reactions" to the LapBand. Worrying about him is a full-time job in itself. Plus he's crabby, which makes me crabby.
12)When the boys are home, I am trying to give them a 100% Right now, our relationship is pretty good, so that makes me happy. :)

A quick update as to why I will be silent here for awhile:

1) See above.
2) The boys start their three-week cycle break (no school) on Friday.

What have I given up? Exercising, writing, working in my garden. No wonder I am crabby. And now summer is over. :(

Random bits of blubbering (or "poor me")

My dad's been having some ups and downs with the lapband--some days are good, some days are bad, and some days just scare the crap out of me.

I am sick, my first cold of the season, and have lots of work to do before October. I freelance to help make ends meet, but my contributions are eaten away by medical expenses, and the debt is still accumulating like an infection under the skin. I often think I should return to work fulltime, but there is too much to love and manage here at home. And financially, it wouldn't make much sense in the long run, at least not right now

It has not been a pleasant return to school for Bubba. Moose is adjusting to going to preschool in the mornings, but I am not adjusting to his return in the afternoons. It appears I will have two children that try to hold it together at school and then let it all out (ALL of it) when they get home.

But we got a kitty, and that makes me happy. Bubba named her Silly Sally. Hubby is allergic, but he only has a reaction (itchy nose, watery eyes) about once a week, so I think he may let us keep her.

I have posts started about all of this, but just haven't had the energy, motivation, or desire to complete them.

For now, watch this, and know that if an eighth grader can figure this out, so can you.

Thumbs Up

Dad didn't get in a room until 7PM, but all went well. It was difficult seeing my dad so vulnerable, pale and in pain. Let's hope that he gets the motivation he needs to get healthy so I don't have to see him like this again!

That being said, it felt good to be able to be there for him and my stepmom. He balked about me and Hubby being there since it was "no big deal." But his eyes said otherwise when we walked in. And I was glad my stepmom didn't have to sit in the waiting room for 8 hours by herself. We had some decent conversation, which was good.

Doing Just Swimmingly

The really cool thing about seeing my boys in the exact same environment at the exact same time of the year (even in the exact same swimming suits) is to see how much they have grown and changed.

This is so fantastic on so many levels.

Bubba is now swimming deep under water, nearly across the pool. According to him, he's a "dipsey diver" (he means deep sea diver).



Moose is now in the water (thanks to the water temperature being lukewarm). And that's a big, big, BIG deal.




And Hubby. He's swimming with us. Also quite the feat since last summer.



And me, well I don't care if you see me in my swimsuit. I just don't. And that's a nice feeling.

Sun, Strong Currents, Jelly Fish, and Goodbye

Saturday was a beautiful day...While I spent all day at the beach, Bubba went in midday because he couldn't really play in the ocean. There was a strong risk of rip tides and we were easily knocked down in knee deep water and then carried down shore in a matter of seconds. We did put a washed up jelly fish in a bucket of water and watch it pulsate like a beating heart.




Sunday our friends left early in the morning. We had planned to stay at the beach, but since the current was still wicked strong, we said goodbye to the sun and sand and headed towards home.


It was an extra surprise to drive by Grave Digger's home. Bubba loves Big Foot, and we have visited the Big Foot garage several times since it is so close to home. But Moosie loves Grave Digger!

We should make it home today, after 40 cumulative hours of driving.

Crabby

It rained most of the day again today, but after a few games of ping pong, we visited "the sound." Moosie felt safe enough to get into the water, and had a good ol' time.



And once again, it was clear skies and high tide after 5PM. We were all pretty crabby after 10 hours staring wistfuly outside hoping for the rain to stop, but we cheered up quickly. Still seemed appropriate that we ended the day by "hunting" crabs! The kids had a blast.

Slam!

We hit the beach in a split shift, with a two hour break during the rain. In the afternoon the waves were monstrous (pictures are from earlier in the morning). I decided to go further in, beyond where the waves were crashing on shore, toward the really big waves. Diving in, riding them in, getting sucked into the ocean... all fun and games until one hits you just right and you get slammed into the sand and flipped around. Oh well... jumped right back in of course. Not nearly as bad as Aunt M, whose body looks like she scrubbed with sandpaper... she's been having a good time with the Boogie Board.

We are vacationing with some friends who come here every year (they are originally from the area), and I have to say, it is so much fun! And since we are in a beach house, we don't feel cooped up or antsy. The boys love playing with their friends, and are doing really well.

Rain Rain Go Away

Rained most of the day, but we were out on the beach by 4.

Moosie actually let the water touch his feet for like a second.

Surfs Up!

Raining today, but we got a sun-filled day in yesterday. After 20 hours in the car, we were VERY thankful.





Raining today, but we got a sun-filled day in yesterday. After 20 hours in the car, we were VERY thankful.

Wall * E

I think Finding Nemo was the last time I took the boys to a movie theater to watch a full price, just released movie. I can't even remember if Moosie was born yet? But I remember Bubba. Oy.

So today, on a whim (an expensive one at that) I took the boys to see Wall*E. I loved it, and judging by their reactions, so did the boys. There was hardly any dialogue in the movie, but that didn't stop the story from unfolding.

My boys remained quiet and entranced, hands over their ears for most of the movie. Every so often Moosie's legs would dance or Bubba would squeal and cackle loudly.

It is difficult for me to watch any movie and not see it through my life experiences, and I won't lie and say that the consumerism and destruction components didn't make me deeply sad. I tried to turn off the over-analytical part of me once the robots got to the spaceship; I'll let you figure that part out yourself.

It was a very unique experience watching a movie without constant talking, and I felt the animation did a much better job at capturing my attention than I am Legend (which I found incredibly boring). At times, I forgot I was watching an animation. I nearly cried during one of the scenes at the end.

If you have visual kids (like I do) or are visual yourself (like I am), I highly recommend it. If you don't want to hear your children say "Wall*E" over and over again in their best imitative robot voices, then you might just want to skip it.

The best toy EVER

After reading this post, you would know why this Youzeum exhibit



could entertain my boys for a long



long



time.




Now if someone can just build one in the middle of my living room. It would need to be metal, with bulletproof glass surrounding it, and some safe way for them to drop the balls in the top shoot (or a level for them to pull). And it would have to be really tall with lots of gears, arms, etc.... more visuals, less sounds. This one is set up to mimic the human digestive system. I'd love one mimicking the neurological system... I bet those balls would be shooting and dropping and loop-de-looping all over the place.

So who's going to build it for me?