Rare Chromosome Disorder: One voice vs. Five Board Members

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, October 24, 2012

One voice vs. Five Board Members

On Oct.23, 2012 I attended my first Board Meeting in order to speak about my concerns regarding my son's teacher Mr. Hansen. I was nervous because I was the only parent there and even though the other parent's couldn't make it, I had to over come my nerves because I'm not one to speak in front of people. Once I got to the front and began my complaint I started to feel better, then BAM one of the Board Members interrupted me and said "please don't use the teachers name"...what? I just used his name 3x and the reason why I kept saying his name is that I want everyone to remember his name.... MR. HANSEN. What ever happened to freedom of speech and isn't this a public meeting?
Anyways, I asked if I could continue and she said go ahead, so I had to keep reading and hopes that they got the picture. Once I was done they said I could file a compliant with Martinrex Kedziora, the assistant superintendent, so I got the form and began to fill it out. They gave me extra paper just in case. I noticed at the meeting that Mrs. Villa (ex-principle of Sunnymead) was there to receive an award with other principles for increasing their test scores, once they received their awards everyone left, but she stood. She heard what I had to say and I know she will inform Mr. Hansen because they are close. She always backed him up and covered for him, now she is no longer there since Monday. Once I finished my compliant Mr. Kedziora's secretary asked if I had anything else to put, I told her there is too much to put.
Well it's up to the Board to inform the teacher and have him respond to the complaint, Mr. Hansen is a good "bullshitter" he makes things look good and sound good to anyone who doesn't see what I see, so my notes will go against his notes...and the battle will begin.
I will not stop until my son get's the proper and best education possible.

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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