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.

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!)

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

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.

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.

We Love the Wii

Until I can further divulge Christmas fun, enjoy Bubba boxing on the Wii.

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.

Cold Winter Days and Nights

What do you do on cold winter days and nights?

We do puzzles. Play games. Watch movies. Make Lego guys (virtual and otherwise). We work (grudgingly).







We walk on old railroad tracks. Watch parades. Decorate. Watch the cat torture a cute brown mouse (and then set it free because we can't bare to watch her kill it).












We see Santa (several times at several places). We ring bells for the Salvation Army. We freeze our asses off.







(Yes I realize my son is wearing cowboy boots with sweatpants. And that is a reindeer!)

And my favorite thing to do? We rock out (country style)!



(Beware of my Yee Haw towards the end. A little embarrassing maybe, but worth that smile I get. Sorry for the cell phone quality--it's one of the few ways I can get videos/pictures of my kids without them knowing.)

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.

Think about it

I am working on something in my head and in my journal that further explores the words I have on the right side of my blog, but until then, watch this and this.

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.

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?

More my cup of tea

Finally something autism related that doesn't have Jenny McCarthy in it.

"...anti-cure doesn't mean anti-progress..."

Wordless Wednesday: Redneck Sit Ups

Meeting 1: New evaluations

We have had three IEP meetings for Moosie so far this past month and one more to go next week. At least I hope we only have one more to go. I'll try to break things down to give everyone an update. I apologize that it is more of a 'dump' than organized writing.

This post is only regarding meeting 1.

In less than a year of early childhood special education, Moosie has made amazing progress in the areas of speech/language and social emotional.

This was him around February. More sounds were coming, but signing was still his preference.



This was him in May. We used "shaping" a lot. Once a sound would enter his repertoire, we would work it into words. He was doing a lot of signing at this stage, to the point of passing me and daddy up.



This is him now. He still signs some words, but it has become obvious that vocalizing is his preference. Sometimes he falls back on signs and gestures, which is great, especially since his intelligibility is heavily dependant on contextual cues! (And yes, that is the laundry couch in the background.)



Our goal this past year was to increase Moosie's functional communication. We used a multimodality approach--meaning he communicated with pictures, sign language, gesture, and vocalizations---to communicate whatever and however he needed to. Once the sign language started coming, the vocalizations started coming. No one was expecting this, with the "severity" of his verbal and oral motor apraxia. The little guy has an amazing attention span (1:1) and great problem solving skills to compensate.

So with four days of afternoon preschool in a small group classroom (children with no known disabilities and various disabilities)--including 15 minutes of speech therapy (using the methods that were right for him), 20 minutes of 1:1 intensive therapy (teaching signs/words for expressive language and monitoring receptive language and preacademic skills), and some occupational therapy to help with the choking/stuffing--Moosie has flourished.

But more importantly, with the love of his mommy, daddy, and brother he has flourished just as most three year olds (almost four!) do. With our understanding that he is not broken, that he doesn't have to be fixed, that he needs opportunities, experience, guidance, and compassion to continue to develop along his path.

But with his progress in social/emotional and speech/language, there was concern that fine motor seemed to not be moving along. It makes sense. He still has no hand preference, prefers to finger feed, and enjoys fisting writing utensils etc. Knowing about the motor planning issues, the issue for me has always been what to teach and what to accommodate. Since he is happiest in a 1:1 setting learning new skills, I often opt to teach first if they are skills he is ready to embrace, but accommodate other skills until he is ready for them.

Also, as Moose enjoys participating more in the classroom now, sensory needs were creeping up--hand chewing, crashing into people and objects, and such. Again, when it's harmful for him or others, I consider other options. I firmly believe letting him experience the sensory needs, but finding a way that isn't harmful (like chewing something that won't get infected!) So we decided to do formal evaluations in these areas. This led to Meeting 2.

5 seconds of fame

Moosie used up 5 seconds of his fifteen minutes of fame.

He bounced his way into a local TV show. I of course forgot to watch the show, but I found an online version. We were at the Botanical Gardens yesterday morning checking out the train display while the filming was apparently wrapping up (we asked them why some creepy dude was filming our kids).

Moosie is the one in Denver Bronco colors (blue pants and orange shirt). Yes, he's the one jumping up and down at the beginning and end of the clip, looking somewhat excited and badly in need of a haircut, and with paint stains on his shirt. All the other little boys were clean cut and in sweaters. No one told me that this particular train show had a dress code. Good thing the boy is naturally cute.

Moosie showing me his favorite train, the Santa Fe.



Moosie doing his jig. HE loves those trains almost as much as I despise them (B-O-R-I-N-G!). I do love watching the Mooser be happy though.

Ring of Fire

I decided to dabble in "youtube.com" with one of my favorite Bubba videos of all time. Not the best quality, but whatever. We'll see if this works...



Oh, and Bubba is still quite the music connoisseur...if we could afford an Ipod and would actually give one to Bubba, his playlist would currently consist of Metallica, Johnny Cash, Toby Keith, Enya, James Blunt, Polynesia Spa, the Pink Panther, and various Kids Bopp crud.