Rare Chromosome Disorder: Beginning 6th grade..what a nightmare

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.

Monday, October 1, 2012

Beginning 6th grade..what a nightmare

My son is attending Sunnymead Middle in Moreno Valley and his teacher basically does nothing in the classroom, I heard rumors and stories by other parents about Mr. Hansen, so I toke it upon myself to observe his class on a daily basis...and I don't like what I see. The stories are true, he does nothing, he just wonders around the room looking busy and stretches "circle time" for an hour and "music time" for 30 min. No IEP's are done except for my son he gets attention on some of his IEP's because I sit in the class room to observe.
The aides are wonderful but they are helpless do to Mr. Hansens's non-leadership and guidance with the students, no communication or orde is in that class. I have voiced my concerns to the special education department and to the principle and even though they are giving him another chance by showing him the tools and giving him support Mr. Hansen still choses to do what he wants to do regardless of what anyone says.
Five years of complaints and five years of getting away with murder. Just baffles my mind as to why the district still sits on their "butt" and does nothing about it, you can't fix what is broken and this has been broken too long.

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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