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Below are the 18 most recent journal entries recorded in Chloe's LiveJournal:

Thursday, February 14th, 2008
10:46 am
[huffifer]
Call for submissions: My Baby Rides the Short Bus – an upcoming anthology to be published by PM Press (Winter, 2009)



We are seeking submissions from a diverse group of parents raising special needs kids who feel marginalized by their subculture status (economics, lifestyle, orientation, religion/atheism) and underrepresented in print.



Got tips on how to stay sane during the IEP process when you don’t believe in the system to begin with? Felt you had to hide you radical political books while the Early Intervention Folks come over? Found yourself stuck in a mainstream world of special needs parenting that you don’t fit into?



Submit your stories to a upcoming anthology that features writing from parents in the know about what it's like to raise "special needs" kids -- with no sugar coating or the 'you will dream new dreams' kind of crap we're subjected to by mainstream media. Unfortunately we can’t pay, but all contributors will receive two copies of the book.



Topics we would like to see covered include (but are not limited to):

Experiences with helpful or clueless doctors
· How not to leave your politics at the door and still work the system

· Care providers and how they help us (when they show up)

Community support or lack thereof
· The asinine things people say you

· Challenging people’s assumptions

Keeping yourself sane while caring for your kid’s needs
· The politics of inclusion

· Fighting city hall/demanding more access & services

· Kids with special needs growing older

Alternatives to group homes and institutions
· Politics behind professional care-giving

Alterative treatments: the good, the bad, or the rip-off
*Also, we’re seeking suggestions for good resources/services state-by-state or on the national level. Please send those to the email listed below.



Send 2,000 to 5,000 word submissions by May 15th 2008 or questions to: shortbusbook@yahoo.com Essays must be typed, double-spaced, and paginated. Please include your address, phone number, email address, and a short bio on the last page.



Editors: Yantra Bertelli, Jennifer Silverman and Sarah Talbot, who are parents of “special needs” kids.



www.shortbusbook.blogspot.com
Saturday, July 21st, 2007
10:33 am
[ziggieretriever]
tours
Hello Friends,
Yesterday I went with a friend of mine on a city tour of Spokane (um…). My friend is a tour guide and is being trained along with two other people to be professional tour guides for the city. On this particular run-through of the tour, the trainees were supposed to bring two people to act as an audience and I had the privelige of tagging along.

On our way to meet the bus, I asked out of curiosity if, at any time in her training she and her classmates had been given any instruction as to how to facilitate individuals with disabilities on tour. They had not.

As it turns out, the only audience consisted of myself, one other adult and two children. One tour guide took her turn at the microphone for her portion of the tour and, in an attempt to make things interactive for the kids said there’s this tower,” (blab la bla) “Now, I want the first person who sees the tower to put their hand on their head. Well, almost everyone, someone is obviously excluded so we won’t worry about her…” Wow, I’ve lived for 20 years with humanity’s lack of respect for diversity etc. Somehow, though, this bothered me more than I expected.

These are tour guides in training. A tour guide can make or break a vacation experience for an entire family (or more). So, to take a proactive approach, I was wondering if anyone has stories or suggestions about tours and individuals with disabilities. What have your experiences been? What could have made it better? Was it a walking or a bus tour? I would like to combine any information received in to a hand-out for my friend and so that she may distribute the ideas to her colleagues. And, in case you’re looking for a career change, there is obviously a serious need for actual training on facilitating people with disabilities in this field.

Thank you all very much.
-Jess

(Cross-posted everywhere found even slightly relevant)
Tuesday, March 20th, 2007
11:24 am
[tristissima]
Adaptive Ballet in the San Francisco Bay Area (cross-posted like a madperson)
Hey, ya'll. I'm currently working with a student with autism and, after watching her on the safety bar of our classroom trampoline, have gotten the idea in my head that she could really benefit from an adaptive ballet class. See, we joke about her having rubberbands for bones for two reasons: one is her extreme flexibility and the other is her inability or unwillingness to stand straight (she loves to lean or twist herself or do almost anything but). Assuming it's an inability, the teacher in the classroom supposes she just might not have that centerline concept down. Assuming it's an unwillingness, she might not realize the benefits or the fun of standing up straight.

Of course, it's up to her whether or not she wants to change all that (oh, she's 7 by the way), but either way, I thought that adaptive ballet would be a good thing to try, see if she's interested.

Unfortunately, everything google is showing me is on the East Coast (Maine, Pennsylvania, New York, Boston) and we live out here on the Left Coast. San Jose, California, to be exact. Does anyone know of any resources out here that I might be able to take advantage of?
Wednesday, January 24th, 2007
8:55 pm
[chloesha]
I should be doing laundry or packing...
I finally got my hands on an accessibility study conducted on our school district a couple of years ago. Out of approximately 35 elementary schools, 15 of them are inaccessible. So it's just my luck that our new home school is inaccessible, just like the old one. The second closest school is also multiple stories without an elevator. These are two of the best schools in the district. The closest school that is accessible is mediocre. So while the district may believe that having 58% of their elementary schools accessible is laudable, they often end up removing kids from their neighborhoods and sending them to less desirable schools. School choice for kids with disabilities is further diminished by the practice of consolidating kids at schools that have segragated life skills classes.

With that in mind I have just cross-referenced every accessible elementary school within a four mile radius of our new house with their great schools ratings and state assessments and narrowed the list down to four schools I'd be willing to send H to. Now, getting H into a good school doesn't guarantee that he'll get a good education, especially if they are not supportive or are inexperienced with inclusion. However, you've got to start somewhere and I've decided I'm going to start with schools in reasonable proximity to our home, with philosophies I can get behind, and with an active and diverse community of parents.

Wish me luck! And yes, I know it's January and the new school year doesn't begin for 8 months, but the transfer application process begins in February and ends in March.
Friday, January 12th, 2007
5:04 pm
[chloesha]
Request for Input on Inclusive Child Care
Hello Everybody,

We're up to 14 members, but only a few of you have posted introductions. I know this little community is barely alive, but I'm going to try to breath some life into again.

So, I'm developing training curriculum that will be presented to parents to use to advocate for inclusive child care. I have a few questions for parents about inclusive child care. You can either create a separate post or answer in the comments section.

1. Did your child attend a child care center or pre-school anytime between the ages of 0-5?
2. Did they attend an inclusive neighborhood program? An early childhood special education program? Headstart?
3. Describe some successful experiences and positive outcomes of your child's experience.
4. Describe any barriers or other issues you faced, either in finding an inclusive childcare program or being in one.
5. How important was/is access to an inclusive childcare program to your family?

Thanks for your time!
Chloe
Thursday, October 5th, 2006
8:34 am
[huffifer]
chloe
did you get the zines from me?
Tuesday, September 19th, 2006
11:54 pm
[teal_cuttlefish]
Greetings
I have a 12 year old daughter who is repeating 6th grade after failing last year. She's currently receiving Special Education services for Math and for reading and writing. Her reading is good, but she has a heck of a time with writing. Both her Special Ed classes are very small, close to one-on-one services. And we got some of her mid-quarter progress reports today -- she has a 98.4% in her Math class! She's passing all of her classes.

Last year, she wasn't able to graduate to the next belt in Karate, because she had to be doing well in school as well. This year, we think she'll get her deputy black belt!

The lowest grade we're aware of is a C in Science, and we talked about ways to improve that. I'm so much happier with her specialist this year, and the IEP was much less painful with this woman running it. We've fought hard to get her the assistance she needs to succeed, and I think the combination of being held back as a consequence of failing and a far better specialist that I don't need to fight with has really improved her attitude towards school. Her teacher says she even catches her smiling at school!

Incidentally, while I understand the need for abbreviations in community names, I really don't like the abbreviation "Sped" as a general term. What do you all think? It's an argument I'm losing with the school.

--Alia
1:26 pm
[chloesha]
Another New Member!
Welcome arovd! Please tell us a little about yourself.

Chloe
10:01 am
[chloesha]
Welcome More New Members!
Welcome to teal_cuttlefish and dryadgrl! We are now up to ten members! I think that's a good start for some lively discussions. If you haven't already done so, please put up an introductory post and let us know what your burning issues are. Over the next couple of weeks I'm going to be posing some questions to the community as well as posting more about our experience at Henry's new school. Please feel free to do the same.

Your Faithful Moderator,
Chloe
Monday, September 18th, 2006
9:35 pm
[kimberlycreates]
Hi all. I'm not technically a SPED Mama, but I work with a couple women who have CP, one of whom is also deaf, and a young man with Downs Syndrome. My husband and I are also in the process of adopting special needs children, so I'll likely be a SPED Mama some time in the future. Heard about this community through tupelo. Not a whole lot more to tell about myself yet, and I will probably be lurking and learning more than anything else for a long time.
Saturday, September 16th, 2006
4:24 pm
[yantrarain]
okay, i'll do a little introduction and what not. My partnersaltydogsal and i have four children almost 8 (in 14 days), 10, almost 12 (in 55 days), and almost 16 (in 44 days). our son caleb (the almost 12) has autism and is deaf. ha! the almost things is fun and yet financially frightening. this is our first year of middle school and caleb is in 2 hours of immersion at one school, which in our case looks like a deaf classroom. so though it's immersion for caleb the kids in the class are technically in a self-contained classroom. then he is bussed to his "home" middle school for the rest of the day in a self-contained autism classroom. caleb has a one-to-one aid who travels back and forth with him. we really don't know how the school year is going thus far because the teachers haven't been so communicative yet, caleb doesn't tolerate visits from the moms (he becomes agitated and wants to leave), and he isn't telling. but his "home" teacher will be coming over to our house this next week - so we shall hear. also i don't think the two teachers are communicating to each other much yet. the five weeks of summer when caleb doesn't have extended school year really suck for us so we are glad to be back - caleb loves having somewhere to go and tasks, tasks, tasks. Our struggles in advocating for C involved negotiating his multiple disabilities and challenging the district to really push him and challenge him intellectually (cause this can equal violence). at the end of the school year we had three psychologists from children's hospital give caleb an alternative assessment to try and identify the holes in caleb's intellectual abilities and the environment in which he could learn best (like # of people, position, room lighting, communication, etc.) and two of the psychologists worked with him over the summer on some of his iep goals. we receive 160 hours of personal care and respite from the department of developmental disabilities each month. this is a saving grace for us and yet it is still challenge for us to find individuals that can do the care. our guy has pretty much run through the relatives and we really need folks with both patience, will, and girth to work with him. though living with autism is painful chaos, caleb is of course also amusing and enjoyable and loving.
Thursday, September 14th, 2006
10:53 pm
[chloesha]
SPED Mama Reminder and Updates?
Hello,

This community has been all but dormant since I first tried to get it off the ground sometime last year. We could use some more introductary posts and lots more parents of children, birth to 21 (or whatever the cut off is in your state), who receive special educational services. Please restrict your posts to entries regarding your experiences, issues, questions and/or concerns as a SPED parent.

My son has now began kindergarten and I've decided to keep a journal about the experience, right here on SPED_MAMA. This is my offering to the community, a request for feedback/moral support, and a handy way to document the trials and tribulations of special education in the Portland Public School District.

This summer we went through our first IEP process. We had to fight to get Henry into a half-day general ed kindergarten. We thought the hard part was over (getting an inclusive placement)! After our first week, I can honestly say that was a cakewalk compared to being a trail blazer in a district and school and classroom that has an entrenched policy of segregating kids with significant disabilities.

More soon...

xChloe
Thursday, July 6th, 2006
10:23 am
[huffifer]
"special needs" mamas, i have a question for you.
i am on a panel on parenting at the providence anarchist book fair. what would you want a group of young, probably childless folk who are capable of providing community childcare to know about raising our kids?
thanks and xoxo!
Monday, March 6th, 2006
9:39 am
[huffifer]
x-posted...
l's shrink put him on ritalin. after one dose he is tantruming, not sleeping well & kinda miserable. he is making us miserable too. anyone have experience with ritalim & autism?
Thursday, January 19th, 2006
2:05 pm
[chloesha]
Kindergarten Letdown
It's kindergarten round-up month and I'm exploring all our options and going to open houses and such. I'm pretty anti-commute so I want to stick close to home. I visited our neighborhood school today, which is one of the better schools in the city, has a real music program, an artist in residence, exceptional science programs, high parent involvement, swifts that nest in their furnace chimney every fall that people come from far and wide to watch descend to their nests every evening, not to mention the most gorgeous auditorium with all the original details from the 1920s. After sitting through the one hour presentation, I took a tour. My first was question was "Where's the elevator?" Oh, right. No elevator. Next.

The school chewed me up and spit me out without really knowing it. I left close to tears. I felt resentment and hatred toward every unsuspecting adult and child within a 1 mile radius, who gleefully and ignorantly get to go through their days without having to worry about things like elevators, or how to buy a cart full of groceries and push a wheelchair at the same time, or what you're going to do when your kid grows out of the seat that you can fit into the tire swing, which is one of his greatest joys in life.

I know I'm *overreacting*, there are other choices. But this is our neighborhood school and H shouldn't be excluded because no one has made installing an elevator a priority. All of a sudden all their fucking programs seem like a big thumb to the nose to kids in wheelchairs and walkers. I know it was meant to be comforting when the tour guide/mother said it was sad because the kids were missing out on the experience of having peers with disabilities. I mean it's great that it would even occur to her, but right about now I think her kids have plenty of fricking opportunities. I'm just trying to get mine in the door.

I don't feel like this very often and I know it will pass or at least fade, but I really needed to vent. Thanks.
7:22 am
[huffifer]
my baby rides the short bus:
real, witty & saccharine-free stories from the realm of special needs parenting from bad-ass mamas sal talbot, yantra bertelli, jen arsenault, sharyn morrow, & regina walker.

send $2.50 (zine & postage) via paypal to saucyrev@yahoo.com
Friday, January 13th, 2006
8:21 am
[huffifer]
hi all,
to intorudce myself -- i am mama to L, a 7 year old who is low-functioning on the autism spectrum, and a four month old. L was diagnosed strating around 2 yrs of age, so we've been doing this for a while.

we live in the nyc area with my 2nd husband, who is an amazing stepfather to L. his bio-dad is another story. looking forward to hearing your stories of fighting the special ed system.
Wednesday, September 21st, 2005
11:15 am
[chloesha]
SPED MAMA!
Welcome to SPED Mama!

I'm your moderator and the parent of a healthy, happy, amazing four-year-old boy who happens to have cerebral palsy (quadriplegic, mixed type, with athetosis to be exact). I'm primarily interested in developing a cross-disability community of parents who's children are currently receiving special ed services or have IEPs/IFSPs (birth to 21). I want your success stories and your worst nightmares, complaints, suggestions, advice, etc. What's your experience and position on full inclusion? What are the best and worst places to raise a kid with a disability? How involved are you with the disability rights movement? What was your experience with disability before your child was diagnosed? How have your perceptions of disability changed since then? What support would make the biggest difference in your life?

Please post an introductory entry and let us know about your family and experiences. Also, please pass it on to other parents (they don't have to be mamas) you know who might be interested.

Thanks!
xChloe
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