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January 17th, 2013


nickjacks81
03:14 pm - CP Family
I am a single father of an 11-year old with CP living in the country outside of Austin, TX. I have recently gotten sole custody and am scouring the internet for information, support and resources. I recently came across Cerebral Palsy Family Network and, assuming you don't already know about it, recommend it to parents of ANY special nees kid. Luckily, Austin is a fairly progresssive city with lots of resources, but I still wouldn't have know half of what's available without it. I look forward to reading responses and posts. Thanks.

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April 19th, 2011


alexeiu
01:51 am - Special Needs Taekwon-Do Documentary


The First in the world, Ben Evans, pioneer of Special Needs Taekwon-Do, a day in the life of Hawke's Bay ITF Taekwon-Do School. His goal is to take these students to DPR KOREA in 2011, the next ITF Taekwon-Do World Championships

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May 17th, 2010


mamaduckers
10:47 am - Anti "W" sitting shorts
I come to you all seeking some advice...
Years ago, when my youngest twin was having problems with W sitting, I found some shorts on line that were designed to prevent that. They were a spandex mini-skirt type thing, that were stitched down the center, to create "legs" butwould't allow enough hip movement to W sit. I can not remember the name of these shorts, or the website, and my google-fu is failing me. Our old PT has a client who needs a pair, and I can't remember, to send her in the right direction. Please, someone has to know what I'm talking about.
Thank you!!!

cross-posted

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June 18th, 2009


ladynissa
10:32 am - Developmental Centers
For most that know me, they know that I find Developmental Centers for the Developmentally Disabled deplorable. Nothing but overglorified mental hospitals or prisons.

http://www.news10.net/news/local/story.aspx?storyid=61296&catid=2

This article supports my belief.

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December 12th, 2008


ladynissa
09:01 am - IEP update
I wanted to thank everyone for their advice and help. I have to say, it did not go the direction I thought, the way I thought or badly at all. After some discussion on my son's behavior and non compliance, as well as some things I've witnessed in his Occupational Therapy, we decided that until his sensory issues are resolved, he simply won't learn.

A little background: He has a hard time staying focused, is constantly moving, stims A LOT and is always more interested in the world around him than tasks at hand.

it occured to me in the meeting that what it amounts to is his teacher is frustrated because she doesn't know how to reach him and is focusing that on me and really..I'm doing the same. So I didn't even remotely try to target her on anything that had upset me. Instead, we discussed how to help Dane's sensory needs. The Program Director for the Autism Unit was there and she will be visiting the classroom to see how the environment is and how he responds to that environment. Furthermore, the Occupational therapist at the school will be doing an extra evaluation, to include contacting the Occupational therapist at the hospital to coordinate a sensory diet for my son. They will also be evaluating his need for ABA in the classroom.

I left it at this. If we get his sensory needs met, it SHOULD follow, that the learning will begin and if it does, then we can address his academics. If he still isn't being challenged...that can be addressed then. But, until he's willing to actually sit and learn it really doesn't matter what they put in front of him.

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December 11th, 2008


ladynissa
07:57 am - A Little Help
Hello All.

For those that have been following me, you know a few things about what's going on with my son's school and I. So, today is the IEP meeting. I'm not sure I trust myself to be calm, cool, collected and say everything that needs to be said. I just got a note from his teacher, yesterday, saying that he is learning "beginning" counting and its going poorly because he doesn't understand numbers.

My jaw dropped and then I cried some.

I wrote her back telling her "1. He learned how to count a long time ago. 2. He knows numbers 3. his father, day care provider and I have done addition and subtraction with him. Try challenging my son and you might get results"

Anyway, I just need a little advice on how to come into this meeting and make it productive..without screaming, yelling and crying. Normally I do just fine, but I just don't trust myself this time.

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November 7th, 2008


ladynissa
11:30 am - Attention Californians
I don't say much here, but I am a parent of a boy with Fragile X Syndrome. Most people odn't know what that is, but its basically a genetic abnormality that can cause an array of disabilities, my son has "autistic like features".
Anyway, I am also a Case Manager for Community Employment at a work program for Adults with Developmental Disabilities. So you could say I am involved at or have been involved at all levels of services for people with disabilities.

If you're in California, you know that the state is in a major crisis. Just recently the state voted to cut funding for Supported Employment programs by 10%. For our program that's a loss of 40 grand per year, for some larger programs its 40 grand a month. If you dont know what supported employment is, its employment for people with disabilities, in the community, with supervisory support from a job coach whether in a "group" or individual basis. The goal is to work toward Individual and fade out the job coaching to minimal or non existant.

Now the state is pushing for a 3% cut over and above that for not just supported employment but for ALL programs. We've been at a rate freeze for 10 years. Some organizations like mine barely pay above minimum wage for job coaches and not much above that for case managers. These cuts will, of course, make those rates of pay go down yet the quality expected to remain the same. It is unreasonable to ask someone to work for 8 dollars an hour to help another human being or, sometimes, four other human beings learn to be independent. It is especially unreasonable when you consider some people get paid more to say "would you like fries with that?"

My son is 8, I am terrified of what California may or may not even have left for services when he becomes an adult. Our children face an extremely uncertain future in a place that does not even consider them to be important enough for support. This, of course, leaves them to the streets or to developmental programs which are nothing more than psych wards, rather than productive members of teh society. The state is helping them become MORE dependent upon revenue from the state, rather than independent of it.

If this appalls you, like it appalls me and you live in california, please tell your assemblyman. Tell them to stop taking away from our children's future. Tell them to stop taking away from the adults that are just struggling to have a good life.

Thank you

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November 4th, 2008


mamasays01
10:35 am - Write Letters
http://mediamatters.org/items/200807170005

I want this guy off the air.

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September 11th, 2008


jynxgirl
11:38 pm
How do you deal with depression when it creeps up on you?

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August 10th, 2008


stitchwitch_d
02:36 pm - very disturbing
My 5 year old son has been diagnosed with uneven cognitive development, and has a history of behavioral problems, including self-harming and being aggressive towards other children.
 
He'd made good progress, and we let him have a guinea pig under the condition that he help take care of it, and he seemed to really enjoy the responsibility. Last week, my husband told my son that if he got his room clean, he could have his guinea pig in his room, and that was a good incentive for him.
 
Then, Thursday night, I refused to read to him at bedtime because he had dragged his feet getting ready for bed and his room was a mess.
He came downstairs and said "Oreo dying. I punch Oreo and died him."
We spent the next few hours comforting the guinea pig, but he had internal damage, and died shortly before we got up in the morning. He was such a sweet little guy, and we all miss him. My son mostly talks about wanting a new guinea pig.
 
My son is getting play therapy, and remedial services, so we're going to tell them what happened and see what they say about it.
Right now, I can barely stand to look at the boy. I don't know if I can ever trust him again. What kind of person kills a defenseless animal for no reason?  How could I love someone that would do something that vile? I just keep remembering the beginning of the new version of Halloween, with the young Michael Myers killing pet rats, and wondering how to keep my son from growing up to be like that.
 
If anyone knows of any resources to even start figuring out how to deal with this, please let me know. I don't even know what to google.

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