Rare Chromosome Disorder: Waiting.....

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.

Friday, November 2, 2012

Waiting.....

Mr. Hansen is being investigated by Human Resources so in the mean time I am not allowed in the class room till then, so I'm waiting...for what...I don't know. Results...I doubt it but I would like to see what they have found and if they think that Mr. Hansen didn't violate the FAPE rule, their full of it and only covering their butts just in case I decide to seek legal action. What a waste of time, but this is the procedure and steps that need to be taken. It really upsets me because sitting in his classroom for 2 hours and watching this teacher roam around as if he had nothing important to do, to put kids in front of a computer, 3 at a time, on a food game that speaks the item is just putting them aside so he don't have to teach them anything. To ignore a kid at a desk while he chews the heck out of his toy for 5 hours during circle time and the rest of the day is sad and disappointing. To see another kid be put in front of a device meant for blind children and she can see, just baffles me. To see one kid be paid attention to more then the other 11 kids doesn't make sense and to tell me that this kid can speak 50 words, yet I haven't heard one word come out of him. To question an IEP and ask why he has to do the PEC system 20x for my son to learn how to communicate...and still doesn't do it, why is he still here? To see one kid who used to talk and walk independently before he came to his classroom and now says no words and needs assistance to walk?
The system is broken and no one cares in the Special Education Department at Moreno Valley because if they even cared half of what I care I wouldn't be doing what I'm doing. My son matters to me and his education is important and if you can't educate then don't teach if you can't deal with parents like me then retire. It's unfortunate that this "one" teacher can hurt all other teacher's who do care and love these kids, it's unfortunate that this "one" teacher is only in special education for the money. Makes you wonder why some parents choose to take their kids to Charter Schools or a different district; why fight with us, why spend more tax money on your lawsuits form parents like me? If they just toke the time to really listen to the parent's that are honest and just want what's best for their children and put us first we could avoid all this, but they have forgotten how to be a good person; politics, money, rules and regulations, or just plain ignorance has over come their judgment. So I'm waiting....for what...who knows...a miracle...an epiphany....maybe just closure.

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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