Rare Chromosome Disorder: Follow up on meeting

Unique

After David being diagnosed with a rare chromosome "genetic" disorder I was referred to a web site called rarechromo.org and I found there facebook page for parents who have children with a rare chromosome disorder. There is approximately 3 families that are registered in the United States and most of the families are registered in the UK. My son was tested by his Metabolic and Genetic doctor for Fragile X Syndrome and even though he had the defect of the "X" chromosome he did not have Fragile X. It's not until 3 years later that he got tested for the deletion of his genetic chromosome and therefore diagnosing him properly. I recommend that ALL parents have their children tested by a genetic doctor, you just never know what you'll find out.

Wednesday, November 14, 2012

Follow up on meeting

The board meeting went well, Mrs. Vacker actually apologized before hand and said it was an error in her part, a couple of her board members confronted her on that mistake and she toke responsibility...good for her. I was able to speak again and I mentioned that while I observed a Riverside District School I saw how much technology that class room had for their students, for example: ipads, computer apps., remote control toys with push button control. I mean they had some good stuff and all the kids were capable of using them, thanks to the wonderful aides in that classroom. I asked the board to please look into having technology be put into our district especially in Mr. Hansen's class because our kids would be able to communicate with a tap or even a simple eye brow movement and to have the funds for special education be invested in technology. Also I stated that Mr. Hansen's class room does not do community based intervention, no mall trips or any trips what's so ever. These kids never go out, so why can we look into it and have this intervention be put in place at Sunnymead Middle, since all other schools seem to do it why not ours?
Cathy, another parent who has a daughter in Mr. Hansen's class got up to speak and she mentioned her concerns regarding her daughter. Her daughter has had a fall accident under Mr. Hansen's supervision and Cathy has asked the school to put in carpet in the classroom because her daughter has CP and she and other students need a soft surface to move around in. Also while she had an IEP meeting she asked to see the class after and when she walked in she saw her daughter laying on the floor, not the carpet, but the floor.
How can they just leave her there and not put her in a bean bag or even her gait trainer? She begged the Board to please go see the classroom and see for yourself, she began to cry and who can blame her, it hurts knowing your child is being mistreated. Mr. Rios assured her that the board is taking this seriously and will look into it.
Thank goodness!!! another parent was brave enough to speak out and now their are two complaints on this teacher. And as for the other group who was their to support me on my issue regarding my first amendment rights, they were their and they got a chance to speak out on the Budget Committee Advisory meetings to keep them public and for the board not to try to make the meetings a Superintendent Budget Meeting, because of the Brown Act the public has every right to see and hear where our budget is going. So the meeting went well and the outcome was good. In update on Mr. Hansen' investigation, I believe its finalized and Kathy Yugo and Mrs. Woosley are still there training the aides and Mr. Hansen. So I asked Pam Binder to look into the matter about if I can return to the classroom to observe my son. Thanks to all who were there to support us and will keep you posted on the outcome.

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Technology

http://www.ablenetinc.com

One thing to consider is technology for your child, for instance my son has an I-Pad that he uses at school for learning his name recognition, tracing letters and numbers and also for communicating. He understands the concept of sliding and pushing buttons in order to make the use of the I-Pad, he does this at home with our phones as well. So, if your child is tech-savvy then why not consider technology as a learning technique. See the above website for more information on Assistive Technology Products.

IEP's

http://specialed.about.com/cs/iep/a/ieparticle.htm and

autismvancouver.blogspot.com/2012/04/ieps-and-autism-spectrum-disorder.html

As a parent with a child who has a disability, it can be overwhelming just to find him the proper placement for their education. An Individualized Education Plan (IEP) is important to have, but the parent needs to be realistic about what their child can and cannot do. Take into consideration the physical, mental and behavior issues and make a list of what is the most important concept for your child to succeed. For example, my child is non-verbal and not toilet trained; therefore, I chose for his IEP to establish goals for communication and toilet training. I know that my child is unable to comprehend Math, so he will benefit with more Daily Living Skills to make him more independent at home and in public. So, parents please re-evaluate your IEP and child every year, so that making the proper goals and placement will benefit everyone, especially your child. See the above website for more information.

Rare Chromosome Disorder