Oh yeah, that's why...

Some days I wonder if we're doing the right thing homeschooling the boys. Are we doing enough of the right things? Not too many of the wrong things? Most days I wonder what in the hell are we doing?

But then I stumble on some "Behavior warnings" that Bubba received in his final month of public school. It reminds me how clueless the school staff was regarding his disability and how unmotivated they were to help him be successful in the regular school environment. And then I remember he has been off of all medications for almost a year. Not that it has been easy, and not that medication won't be revisited. But it was a break we could do because we could control his environment rather than try to control him. Sort of.

I still feel lost though, and I'm not sure that feeling goes away? Anyone?

Taking the Good with the Bad

On my good days, my collected days, my recharged days, I am rational and I approach things from a direction that just makes sense. I can block a head butt with a compassionate hug and work through a difficult choice mitigating an explosion with nothing more than step by step simplified problem solving, tight squeezes, a soft steady voice, and a willingness to separate the behavior from the communication. I don't flinch when I find money torn into little pieces in a carefully constructed pile behind the couch. On these days I breathe unicorns and rainbows. I only see the smiles, the hugs, the laughs, the growth.

On my bad days, I feel like the man from The Green Mile, the man who sucks up all of the bad energy. Except I never get to vomit locusts. Instead they eat silently inside of me, nibbling at the parts of my brain that control short term memory, self confidence, patience, motivation. Some of them eventually do break free, directed at my children at the oddest of times. My voice spews tiny buzzing wings that lash out and frantically slice in an effort to make someone else feel the fear, the confusion, the anger that I feel. I catch myself quickly and gulp down the immature retaliation, bloodying my already raw throat. These are my children. They don't know better. I do. I must lead by example. I must. On these days I wonder what is wrong with me? But it is also these days that allow me to "get" Bubba and Moose, which opens the possibility of more good days.

So the dance continues.

Facebook killed the mommy blog-star...

Ok, so I am not a blog star, but Facebook has basically killed my blog. Lately, with all of the homeschooling, gardening, cleaning, mommying, and just plain living, I am having little time (or attention span) to construct any worthwhile posts. But on Facebook, I can type my ADHD thoughts as "status updates" and post pictures from my new handy dandy iphone in the blink of an eye.

What once would've become a blog post has now become Facebook vomit. I signed up for Twitter and then decided that Tweeting may just push my bird-brain past the point of no return, being that I tend to forget what I'm typing before I get out a complete thought.

The boys work on "Look at me" pages, which was my bright idea to help with them journaling since they have such difficulty with writing. So they glue pictures, color things, and I script for them. Eventually maybe I will go through them and post some pictures and maybe even write something. Maybe. Look forward to the arch, the riverfront, museums, swimming, paddle boating, fishing, cooking, learning, creek walking, park playing, food growing, habitat building, hiking, etc.

It's just like riding a bike...

Like everything else in Bubba's life, things don't necessarily come easy, but with enough confidence and practice (and some accommodations and modifications), almost anything is possible.

Bubba learned to "lose the training wheels" this week after several unsuccessful and frustrating attempts (years) at home. I can't explain the smile on his face as he "launched" today, but I will tell you that I cried as he yelled "I'm doing it! I'm doing it!"

Smart Ass

[Comment: I changed one of the names but couldn't change the one that was crucial to the story.]

We were putting on jammies, and as always, we were noticing and pointing out things we probably shouldn't along with discussing who inherited what from whom.

Daddy, slightly disappointed, "Bubba's got the Smith butt..."

Me, never failing to correct Daddy, "No, he's definitely got a Harry butt."

Bubba interjects angrily, "No! I don't have a hairy butt!"

And like the whole thing was scripted, Mooser looks at Daddy, casually gestures his pointer finger at him, and states clearly, "but you do!"

Three Words and Then Some

A few days ago, Mooser came up to me, hung over my back and smooshed his face up to mine. "I wuv you mommy," he purred. And after I said "I love you Mooser!" and kissed him, he rolled around in my lap, over my shoulders, down my back while experimenting with the phrase. After one final big momma smooch on the cheek, he gave me his infamous sideways glance and happy-danced towards his Legos.

This morning, Bubba stretched with his rear in the air, his head cocked slightly, and his shoulders hunched to allow his arms full reign to zap the remaining sleepiness through his fingers. He then bounced out of bed, only to return to intently sing "I love you mommy," before leaping back out of bed and crushing whatever was in his path, my "I love you too Bubba," following him as he darted out the door.

I must be doing something right. Or I just haven't done anything wrong in awhile.

A Lost Love Letter

Dear Mom,

This week (well, Hell actually the past few years) has been really hard. I feel so lost, and when trying to find my way, I think of you. And then I get confused because I can't remember you being my mom the way I want my boys to remember me being a mom. And I don’t know where to go from here, so I keep trying to remember.

I remember that one time I threw up in your car and I got in trouble for eating too much cereal. We had to stop at the mall so you could buy me some new clothes. I remember riding in your car on the way to your work and the brakes not working and you throwing the car in park to stop it. I remember going inside your work once.

When I lay trying to sleep at night and let the dots connect and the neurons obsessively fire off, I remember bits of you crying when you ran over a kitten and me chasing you up the stairs as your body collapsed in grief, you eating brown rice, you knitting me two little stuffed kitties for my birthday (I still have them), but telling me they were socks when I caught you (I believed you). I remember eating at a restaurant, getting a letter from you at Girl Scout camp. I remember sleeping under your bed because I was so frightened by a nightmare I had and I wasn’t supposed to be out of my own bed.

And of course later, I have memories of you being sick, and laying in bed. I have memories of you in the swimming pool, you putting on mascara, and you laying on the couch telling me and my cousin to be quiet while we were playing. I remember visiting you in the hospital, somehow excited by the fact that kids were not supposed to be able to leave the waiting room, but for a reason beyond my understanding, me and Sister got to go in the hospital and into your room.

I remember not grasping the meaning of the visit or the importance of the fact that this was the last time I would see you alive. I remember you laying there, eyes closed. I remember seeing you look similar later at the funeral home, but you somehow looked happier and more alive than that day at the hospital.

But what I don’t remember, no matter how hard I squeeze my eyes closed or try to drift into some childhood coma, is you ever hugging me or physically comforting me, whispering in my ear, telling me you love me. I’m not saying it never happened, I just can’t fucking remember it no matter how hard I try. I see pictures here and there, but I still can't remember.

While there are many who give support, offer advice, pray for me, think about me--there is no one who can give me my mother’s love, my mother’s touch. And I think that’s what I need right now, mom. I need to remember a hug, a touch. Just one time--just one time so I can feel what it was like to have not just a mother, but a mom. Maybe that would help me not feel so lost as I try to be not just a mother, but a mom to my own boys? Maybe?

I am now older than when you were when you died. Your grandchildren are nearly the same age as Sister and me when we lost you. And I think about the depression, the self-reflection, the passion, the anxiety, the whacked-out emotions that I have and how everyone says I am just like you. And I think that maybe you felt this lost, like me, as a mother, and never got to grow past it, to work through it, to embrace it. The thing is you never got the chance to figure yourself out, and more than anything, I think I mourn this for you.

And I think this has been holding me back somehow. Somehow, my map of motherhood ended with your last breaths of life, and I have reached the point where I am on my own, without a guide. It’s time for me to move past this. Not that I am there yet mom, but I think I’m finally not afraid to live past your life. Almost. And maybe someday it won’t hurt so much to live the life you never got the chance to live and to love the way you never got a chance to love. Maybe.

Forever you daughter,

ange

Botanical Gardens

Sorry there's no witty story to go along with this, but at least you know we are alive.

We went to the botanical gardens on Sunday, and it was a beautiful 6 hours flanked by one kid throwing up in the car and one realizing a little too late that he was passing more than gas. Ever ride home in a car in 90 degrees weather with puke and shit? I know some of my readers have!

Seriously, the gardens were beautiful, the kids' garden was Bubba's favorite place ever. Moosie never complained about all of the walking. There were only a few tense moments, like when Bubba and Moose were walking on the bridge with no rails in the Japanese garden or when Bubba nearly knocked his Aunt M into the lake (note to self, next time stay away from the Japanese gardens).

Oh, and apparently Bubba thinks anyone who speaks a different language is Spanish. He went up to an Asian man and asked if he was Spanish and the guy started laughing. Meanwhile Mooser picked up a burning cigarette butt from an outside ashtray, pointed to the sign we were standing by, and shoved the thing in my face saying "Sign say no DEEZ TINGS!!!" I totally didn't see that coming.

Seeing Things in a Different Way

While going to bed, we were telling Bubba that we would be ordering his new glasses tomorrow. Moosie of course wanted to get glasses as well, and was rather upset with us explaining that he didn't need them.

Bubba--who has had glasses since he was a year old or so-- questioned knowingly, "Was [Moosie] born without glasses?"

There was a hint of sadness in his voice, not because he needed glasses but because his brother didn't have any.

We told Moosie not to worry--that if our genes had anything to do with it, he would probably need glasses eventually.

We've Been Busy

Bubba is "deschooling" and so is momma. We've been busy ... good days, bad days, Tartan Days, building garden days, sensory days, soccer days, lunch break days, filling garden days, experiment days, lots of days [not blogging].

Skating Through it All

This week has been particularly hard on our family, but more on that later. Today, Hubby left for another week away for mandatory work training. A friend invited us to go roller skating with her church group, and rather than sitting at home depressed over all that has and is happening, me and the boys went.

I am so glad we did. I watched Bubba fall again and again. This was maybe his second time roller skating, so no surprise there. I got out there with him and told him "Look at me, not at your feet. You can do this. YOU CAN DO THIS!" He smiled as he tried, both of us laughing as we tried to navigate around the rink, others his age whizzing by.

By the end of the session he was skating on his own. Not smoothly, but he was doing it. And he was happy as he danced robotically across the rink. He continued to fall...and he continued to get right on back up. And the neatest part was when another kid would fall down, he would be right there to help him up.

Later, when I was frustrated about something else, he said the same words I said to him..."Mom, it's OK. Don't get frustrated. YOU CAN DO THIS!"

And that right there made this whole week worth it. My baby believes in me as much as I believe in him. What more do I need?


(It's a cellphone video, but look at the boy try to dance on wheels!)

The Media Circus Begins

This is why I have been so quiet.

I do not like this. Today I show my face and then stand back as people make comments like they know what's going on.

I guess the cover was blown early regarding the press conference today, so now I can share this publicly:

http://www.ksdk.com/news/local/story.aspx?storyid=167698&catid=3

The comments are starting.... the ones about how the kids should just be in mental institutions or that this treatment is warranted because these kids are 'so violent.' Oh and the ones about how if I would do my job as a parent this wouldn't be happening... Any support in the comment sections would be appreciated. I'm guessing stuff will be in the post this week too.

Chicago Public Schools Should be a Wake-Up Call To Missourians

**Crossposted**

National media has been exposing alleged abuses in Chicago Public Schools. Most people are unaware that corporal punishment of school children is still allowed by law in Missouri. Missouri lawmakers should abolish corporal punishment in schools and also address the abuse of restraint and seclusion in all schools.

House Bill 96, which is making its way through the Missouri House right now DOES NEITHER. Currently The Safe Schools Act allows corporal punishment. HB 96 would also add "use of force" but neither will be defined or regulated. Your help is urgently needed to push for real reform for the safety of children attending school.

Consider contacting the Missouri House Special Standing Committee on Children and Families :
http://house.mo.gov/content.aspx?info=/bills091/commit/com488.htm and Elementary and Secondary Education Committee: http://house.mo.gov/content.aspx?info=/bills091/commit/com455.htm

And the Missouri Senate Education Committee: http://www.senate.mo.gov/09info/comm/educ.htm and the Joint Committee on Education: http://www.senate.mo.gov/09info/comm/statutory/jced.htm

*****

Copy and paste URL:
http://www.wbbm780.com/Report--Abuse-Found-At-Chicago-Public-Schools/3823032

Of Mice and Men

Bubba and I were going through a book of presidents and once we were done he asked me where Geranimo Stilton was as he flipped through the pages. Who in the hell is Geranimo Stilton? Some president I never heard of? Possibly. There are a lot of those.

Nope. I found out from Google that Geranimo Stilton is a mouse. Go figure. Bubba then ran off to watch Stuart Little 2. Maybe there's a connection there somehow. Still not sure what that has to do with presidents.

Can't type much more. Now that Bubba knows I can Google names and find out things, he keeps asking me to Google every time he hears/sees a name in Stuart Little 2.

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.

End the Abuse

I, along with thousands of other parents, persons with disabilities, and advocates, am trying to ban the use of seclusion rooms and abuse of restraints in our public schools.

Please take a look at Zach's story: http://nomoseclusion.blogspot.com/2009/01/zachs-story.html There is a video. It is kind of small, but I can't upload it properly to youtube right now because it's giving me trouble for using a particular song. There are also some areas that are difficult to read, but I will be working on those as well.

Most importantly, show your support and pledge to stop this here: http://autism.change.org/ actions/view/end_the_use_of_ aversives_restraints_and_ seclusion

Please note, this is not an issue only affecting those with autism, but all individuals with disabilities.

Talk to your legislators, talk to the media, share this and let people know that this is going on. Share your story anyway you can.

Please e-mail me if you have a personal story. And if you have a child with a disability in the school system now--even if you don't think it is possible for them to be restrained or secluded--consider sending a letter to try and prevent this from happening to your child (http://aprais.tash.org/parents.htm).

Thanks,
Ange

nomoseclusion.blogspot.com
nomoseclusion@gmail.com

Bubba's Story

I finished the video to introduce my restraint and seclusion presentation on Thursday.

Press play. Sorry for the size, Youtube is giving me grief for using an mp3. I did buy the song and I have it on a soundtrack CD somewhere. I don't like breaking rules, so now I gotta go figure this out.



You can read more of Bubba's story here.

Got the youtube version working:

Happy Birthday Bubba!

You are nine years old, and I love you with all of my heart, more than I ever thought I could love another human being. I finished your video like I promised. It's not exactly like I had hoped, but it's done. And you know as well as me, that sometimes, well, that's all that matters.

You are the spark in our lives, and we love you. Thank you for pushing our boundaries; we are so much more because of you.

mydeo


youtube

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.

Happy Birthday Moosie

Momma is sick today and Daddy is working until 9PM, so we should be very sad that today will not be a birthday extravaganza. But we don't have to worry, because you opened your presents this morning and you were excited about the toolbox (um, that we found downstairs) filled with a sink plunger and a level and a plastic scraper (um, yeah all from downstairs).





We gave you books and a calendar and a wii accessory box, and you were as happy as happy could be. You were opening presents with Bubba and Mommy and Daddy, and that was "extravaganza" enough for you.



Thank you for bringing that into our lives. Thank you for being in our lives. We love you.

I still can't believe you are FIVE. Five! I love you baby.