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.

Failing Zakhqurey Price

Dear Readers,

Chances are you don’t know who Zakhqurey Price is or why it matters to you that this 11 year old boy was charged with a felony. And most likely, if you did see his name fly by as you scanned Facebook while drinking your morning coffee, the words “autism” “injured teacher” and “felony” alluded to a story that was disconcerting but not applicable enough to your own life to garner any further investigation. Besides, a lost virtual cow needed you now. If Zakhqurey Price was real news--important news--you’d catch it on your favorite newsmedia outlet, right?

Wrong. Although barraged by information and leads, larger media has yet to tackle Zakhqurey’s troubling story. This isn’t surprising since abusing children with disabilities is tolerated and justified by the general public. If you don’t believe me, peruse the online comments of the relatively few local and national stories dealing with the abuse of students with disabilities. If you need more evidence, take a look at the recently introduced federal legislation that is aimed at protecting school children from being involuntarily locked in rooms and restricted from moving. Yes, as evident by hundreds of stories of the misuse and abuse of seclusion rooms and restraint procedures in our public schools, we need a federal law to keep public schools from locking children with disabilities up in padded rooms, strapping them down in chairs, and pinning them onto the ground until they are no longer able to breathe.

I know where your mind is going now, at least if you are the general public. It’s the same place that will quietly beckon you once you read Zakhqurey’s story: These kids are dangerous. These practices are needed to keep everyone safe. Teachers shouldn’t have to put up with these kids. It’s a sad situation all around, but these kids aren’t my problem. And with these beliefs also come the less obvious but no less common opinions: Children with disabilities don’t belong in public schools. They aren’t capable of learning. These kids are a drain on the system.

Wrong again. Unfortunately children with disabilities, children like Zakhqurey Price, are all too often not given a chance to achieve their potential. They are instead intentionally set up to fail. These children are denied evaluations and refused adequate services, support, and accommodations. And when these children reach crisis after repeated systemic failure, unsafe methods such as seclusion and restraint are used as a first line intervention rather than as a last resort. As what happened in Zakhqurey’s case, these methods often escalate already distraught situations as children respond out of desperation, fear, and confusion. And finally, the “fight or flight” reactions of these frightened children then “justify” the schools’ responses of dangerous physical interventions in the name of treatment and/or safety. This perpetual cycle of failure and abuse at a minimum leaves children traumatized but also leads to injury, arrest, or death.

Unfortunately, Zakhqurey Price’s story does not end with the abuse of seclusion and restraint methods, but continues with unrelenting systemic failure and abuse. So what happens now? Will you tend to your virtual farm or will you instead pay attention to Zakhqurey Price, realizing that his story is happening everyday in our own backyards? We could stop this abuse from happening especially if we just took the time to notice it.

Ange Hemmer

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.

Tis NOT My Life!

Today I saw a video that told a story about autism. But it wasn’t my story, or my boys’ stories, or my family’s story. And it really pisses me off that people are going to watch this and possibly think (assume) that this is our story, our life.

I’ll let you watch it.



I couldn’t even get through the entire thing. I showed Hubby, who just stared at it gape-mouthed as we watched it in the kitchen so that the boys couldn’t hear. (Can you imagine them watching that? “Mommy, did I ruin your marriage?” “Mommy, do I make you cry every day?”)

Our life is not all roses, but it isn’t all gloom and doom either. One of the reasons we have not ‘failed’ is because we have made choices to balance us. Our life is meaningful. My boys’ lives are meaningful, and dare I say enjoyable! We certainly don't live the status quo, nor do we want to. We certainly aren't indistinguishable from other families, nor do we want to be. People's perceptions of our children negatively effect them and us much more than their disabilities do. And videos like this certainly don't make perceptions change for the better.

Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can’t stand the organization’s scare tactics. But I have walked to support my friends and their families more than anything else. I don’t know if can do it anymore. I can’t just write this off as “fundraising” anymore or ignore it while I support my friends. I can’t ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscious make my children participate in the walk, enforcing a message that they had no part in creating.

I feel lost tonight, shaken, dejected, hollow, battered. I may cry. I may lose sleep. I may feel scared, overwhelmed, and helpless. But it’s not because of Autism. It’s because of Autism Speaks.

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!"

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.

Fatal Attraction

See this cute little puddy tat?



She likes to torture things. Like this one that she blinded and then watched as it slammed itself into things.



And then decapitate them and drag them into our basement. Thankfully this one didn't fit through the kitty door.



I'd almost be disgusted, except that Momma's vegetable garden and flowers have been virtually untouched. And Hubby, who "hates" cats, now has a strange fondness of this one because she comes when she's called, snuggles with his boys, and kills things. Apparently his priorities for females aren't very high.

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.

Mooser-isms

Bubba has quite a long list of Bubba-isms. I guess Moosie is trying to make up for lost time. While we were fishing, he was climbing on a fence near the street. While I asked him to get down because I didn't want him to fall in the street, he shrugged and casually stated "I no get hit by a car yet..."

****

And then today we watched a drum and fife group parade down the street in Old Town. When we urged him to leave after the group had passed, he adamantly pouted "It not over yet!" as he 'happy danced' while the cars impatiently putted behind the group. He didn't believe me that the 10 cars or so were not part of the parade. I think I may have tried to convince him that cars were a parade at some point when we were stuck in traffic some time ago in order to avoid a meltdown. Whoops.

****

And in case you think I just torment my youngest son...at baseball today Bubba was talking to a little boy's dad whose son was born without eyes. The dad was trying to explain the "fake eyes" and I piped up how Pa Pa (Hubby's dad) has one glass eye. I was trying to relate it to something he knew about to make it easier to understand. But apparently he didn't know, because it looked at me like "What the fuck? Grandpa has a glass eye?" And he definitely didn't understand.

Foot in mouth. Again.

Education Bill Containing Seclusion Language Passes

[crossposted]

Missouri, May 14, 2009

A comprehensive education bill that contains language regarding the use of seclusion rooms has passed. This bill moved extremely fast.

Unfortunately this language is not what we would like to see. We recommend legislation that includes all the provisions recommended by the NDRN report and will continue to advocate for such.

House Committee Substitute No. 2 for Senate substitute for Senate Bill No. 291

Section dealing with seclusion:

160.263.
1. The school discipline policy under section 160.261 shall prohibit
2 confining a student in an unattended, locked space except for an emergency situation while
3 awaiting the arrival of law enforcement personnel.
4 2. By July 1, 2011, the local board of education of each school district shall adopt
5 a written policy that comprehensively addresses the use of restrictive behavioral
6 interventions as a form of discipline or behavior management technique. The policy shall
7 be consistent with professionally accepted practices and standards of student discipline,
8 behavior management, health and safety, including the Safe Schools Act. The policy shall
9 include but not be limited to:
10 (1) Definitions of "restraint", "seclusion", and "time-out" and any other
11 terminology necessary to describe the continuum of restrictive behavioral interventions
12 available for use or prohibited in the district;
13 (2) Description of circumstances under which a restrictive behavioral intervention
14 is allowed and prohibited and any unique application requirements for specific groups of
15 students such as differences based on age, disability, or environment in which the
16 educational services are provided;
17 (3) Specific implementation requirements associated with a restrictive behavioral
18 intervention such as time limits, facility specifications, training requirements or
19 supervision requirements; and
20 (4) Documentation, notice and permission requirements associated with use of a
21 restrictive behavioral intervention.
H.C.S.#2 S.S. S.B. 291 73. The department of elementary
22 and secondary education shall, in cooperation
23 with appropriate associations, organizations, agencies and individuals with specialized
24 expertise in behavior management, develop a model policy that satisfies the requirements
25 of subsection 2 of this section by July 1, 2010.

Summary:

USE OF SECLUSION ROOMS: This act requires school district discipline policies to prohibit confining a student in an unattended, locked space except for an emergency situation while awaiting the arrival of law enforcement personnel. By July 1, 2011, each school district must adopt a written policy that addresses the use of restrictive behavioral interventions as a form of discipline or behavior management technique, as described in the act. The Department of Elementary and Secondary Education must develop a model policy by July 1, 2010 in cooperation with associations, organizations, agencies, and individuals with specialized expertise in behavior management.

This provision identical to a provision contained in HCS/SB 79 {passed senate as well as house education committee, currently in house rules committee} and is similar to SB 445 {2nd read and referred to committee – no hearing was ever scheduled}. (Section 160.263)

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].

Unconditional Love

There's something about a vulnerable, peaceful, trusting sleeping little boy that is just irresistible, so much so, even the kitty can't pass up snuggling with him.

What's that burning?

I burned rice today. Rice. I think that pretty much sums up why I've been quiet lately.

To be continued....

Backseat

*One of those posts that got lost in the drafts folder!*

So I haven't posted in awhile. I will. Soon. My efforts have been spent at this blog and around the R&S issue. And yeah, it's official, Bubba is now officially out of public school...and a homeschooler. And Moosie is still in preschool and IDONTKNOWWHATTHEHELLTODOABOUTHIMANDKINDERGARTEN. And I am back from Washington DC and I don't think I can really post about it until I have one full night's sleep in my own bed. Then maybe.

And wave to Stimey. I think I have been reading her blog for 2 years. And I met her this weekend. And it was like we were old friends. She is authentic, amazing, humorous, and my type of gal. I found out the COPAA conference is going to be in St. Louis next year. I am going to bribe Stimey to come.