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July 11th, 2008

12:49 pm - The Education Bulletin - An Online Education Magazine

The Education Bulletin is an online education Magazine, distributed free of charge to anybody connected or involved in education.It is a non-profit organisation but is sponsored by various businesses. It is designed to provide parents and students with a forum to vent their stories, experiences and concerns with others. Further, the magazine (which is available to those who register) will include specialist guidance, drawn up by lawyers and educational psychologists as well as teachers, so that those caught in the maze of difficulty within the educational system are provided with a clearer route. If you have a story or a question for our legal panel, or even a query that you might want to raise with one of our associated educational psychologists, then please use the form provided. The editorial team cannot guarantee however that each question can be answered within the magazine, but we will do our best to answer queries, via articles that will appear in our online editions.

Visit us at: http://www.educationbulletin.co.uk

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January 15th, 2008

12:28 am - Vote for WaterBaby CranioSacral Clinics!
Your vote can help me to create a free infant AquaCranial clinic in a therapeutic, eco-pool to provide CranioSacral Therapy for babies ages 0-3 with gentle aquatic bodywork.


Please help me to make my dream a reality and support hundreds of babies and families with gentle preventative therapies.

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December 11th, 2007

01:16 pm - Your Children Have Rights!
Hi, I have only posted here a couple of times. My son is a 7 year old child with Autism. Firstly, he's not Autistic, let's get that right now. I am a person first language person. He is a child with autism, his disability is not him. Secondly, I am a Case Manager for adults with disabilities in a work program. we provide services for those that need assistance in getting a job and we also have jobs available for those not ready for the community. With that said:

I have seen many people not know what to do or how to do it. Not know what they can do or can't do. Keep something in mind, your child is entitled to services, period. Your child is entitled to equal rights, your child is entitled to a safe learning environment and most importantly your child is entitled to a free equal education. In California, we have something called the Lanterman Act that outlines all of this. However, the ADA does as well, so does Title 17. I doubt very seriously that California is the only state with this kind of legislation. Look into your State's Legislation on the rights of those with Disabilities, look at the federal laws as well.

http://www.usdoj.gov/crt/ada/cguide.htm This is the federal guidelines.

In California, because my son is entitled to services, we have a system called Regional Center. Through Regional Center we have Service Coordinators who work with different agencies to provide free services for my child. My son get Behaviour Therapy through this program, I also get respite care through this program. In School, through his Individual Education Program or IEP (something all chidren with disabilities have in schools) He gets Occupational therapy, speech therapy, Adaptive Physical Education. He is bused from my house to MY school of choice. These are all important for you to be aware of.

I have seen several very recent posts from parents who do not know what to do because their child is in the wrong school or they cannot find a daycare provider. To the parents whose kids are in the wrong school or that the classroom is not right for your child. You are entitled to pull them from that classroom or school and put them where you want them, where they will grow as people and learn. IT can be WHEREVER you want. They MUST bus them if you cannot take them. You do not have to put up with it. Your Child's IEP is your chance to voice what you want for your child and they MUST follow it to not follow it is to go against your child's rights. Do not let them tell you what is in the best interests of your child, YOU tell them what you want for your child.  

As for the day care, take a look at your area and see if there are services for children with disabilities.  Those service centers almost always have referal sources for you.  Your doctor may have some ideas as well.  Also look for Cerebral Palsy support groups, finding others with children that have similar disabilities is your first Step.  Day care is tough.  Also, my area has a network of day care providers.  ON that is a listing of what day care providers will take what in the way of disabilities. Or rather, what they are experienced with.   I found it on the internet.  

I am sorry if this post comes off harsh, I just wanted to let everyone know the most important thing, you do not have to put up with schools or anyone when it comes to your child.  You are their advocate and voice.  YOU make the decisions.  They will tell you no, but they can't.  Do not be intimidated.  Fight for your child, they won't.

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01:39 pm - Question
I am new to this community, and to LJ. I have a 2 1/2 year old boy with cerebral palsy!! I was working at gander mountain but had to quit because my husband was not able to get off early to come home to watch the kids. I have 4 kids total. I have called many day care centers in my area but none of them will take my son because of his condition and he has seizures. Does anyone have any ideas on what I can do for child care?
Current Mood: okayokay

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09:24 am
i am bugged.

i would not put my hyperactive autistic son in a room full of small meek kittens. that would be animal abuse.

so why the heck does the public school system place my son in a room with small meek kids in wheel chairs who can not pull away or defend themselves if my son's activity level threatens them?

is there some kind of workplace safety agency who I could ask to go to my son's school and evaluate safety practices? OSHA maybe? I don't know.

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September 11th, 2007

11:24 am - Off-Topic Slightly
I'm new to the community and am not the parent of a special needs child, but I am the younger sister to a brother with Down Syndrome.  He is 27 years old and very low functioning.  He is actually the inspiration for a documentary film that I am directing about the private school in the suburbs of Chicago he attended for 12 years.  The school is Clare Woods Academy (I don't know if anyone is in the Chicagoland area and might be familiar with it) and the most special aspect about the school is that each year the students perform a musical play complete with musical numbers, costumes, makeup, and bright lights!  My brother, Bryan, forever a ham onstage, usually ended up stealing every show with his over-the-top antics, and to this day, I don't think he's ever had so much fun and felt so at home anywhere else, doing anything else.

I thought I would post an introduction and a link to our film's site www.takeabowfilm.com.  I've noticed that other members post links to articles and media so I thought this would be ok.  Our film, "Take a Bow", is not yet completed, we're still grantwriting and raising the funds in order to finish it, but there is a trailer on our site as well as bios of myself and the rest of the crew.  If you have the time or desire, it would be great if you could check it out.  We're beginning a grassroots publicity campaign for the film's eventual release so I figure an audience of people who are interested in disabilies, disability rights and advocacy would be a good place to start :)  Thanks for letting me post and for having such a wonderful space for friends and family of special needs people!

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August 23rd, 2007

09:38 am
My 4 1/2 year old son, Josh, was diagnosed early last year with PDD-NOS. He's got a huge problem with getting his hair cut. I can wash his hair with no problem, as long as I don't pour water to rinse (I have to use a washcloth to get the soap out). He doesn't really like to have his hair combed or brushed, but will let me do it, and every once in a while attempt to do it himself.

I'm sure he's really sensitive on his scalp, so I try every once in a while to just run my fingers through his hair to kind of desensitize him a little bit.

But as soon as we even mention a haircut, he starts freaking out, saying "no, no" over and over. We've tried cutting my dad's hair first to show him it doesn't hurt, and it's even fun. We've also tried cutting it while he's enthralled in an episode of Sesame Street. We've tried rewards (which he doesn't really respond to in general). We've tried giving him plenty of warning, telling him a week in advance (which he generally does respond to with other things). Nothing works. We use children's clippers, which are really quiet and have softer combs, and we've tried just using scissors, but it still takes 3 of us to get it cut, with him screaming the whole time.

Does anyone have any suggestions or tips as to how we can get Josh to warm up to getting his hair cut? Anything would be greatly appreciated!

crossposted, so I apologize if you see this more than once.

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August 22nd, 2007

06:53 am - How do we stay in one piece?

I am putting this question out there to anyone who wants to put in their 2 cents, farthing, shilling, peso, or whatever.

How do you maintain your relationships with other people in the face of the special needs family dynamic?  Or, alternately, how do you begin a friendship with someone, having the same dynamic at play?

The reason I ask is purely because I find myself facing a stage of my life where I am suddenly aware of how much I have withdrawn (comes naturally to an introverted shy gal like me), and really have no idea of how to socialize anymore.  I have a couple of neighbors I'd like to get to know better, and though the desire is there, I have total paralysis when it comes to putting myself out there.  There are not many other special needs families in my town, the few that are seem to be more interested in holing up and hiding than me even.  So I'm looking wherever I can, trying to get some other folks' inspirations on how to remain a happy, healthy adult.

Okay, I'm just adding a few things here, because it seems I was unclear as to what I was really asking:
For those of you out there who are doing well socially, and coping, congrats!  Just remember that there are thousands of families out there who...
Don't know how to get back in the game,
Still feel grief and fear about their child's diagnosis,
Always have been shy and socially nervous to begin with,
Want to be different, but don't know where to start.

What I am asking is this, pretty simple actually (and not intended to elicit lectures) - 
When you finally stopped reeling from trying to rebuild your expectations about life, or moved past the grief (and accompanying emotions), 
What steps did you take to force yourself out of your comfort zone?
This is particularly addressed to all you extraverted, charismatic folks!  You should be able to think back, and recall that you were probably once as uncertain as the rest of us.
So, rack your brains and see if you can think of any good, specific examples of how people like me could take the plunge, and start getting back into "shape" socially.

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August 20th, 2007

03:44 pm - A Very Good Website

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July 11th, 2007

08:23 pm - New community
I created a new community called families_united to discuss issues related to child welfare and CPS. If you have any involvement with or opinion on these issues, from any point of view- foster parent, biological parent, social worker, friend of any of the above, or just a parent who is concerned about how our society deals with these issues, then you are invited to join.

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