Rare Chromosome Disorder: Stuck in the middle of a broken system

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.

Sunday, October 21, 2012

Stuck in the middle of a broken system

My son who is delayed in speech but can function if the PECS system was used more often, he is still in diapers but is mobile. Unlike his other class mates who are either on a wheelchair or with a severe disability, they need more attention because of their health issues so my son gets kind of lost in this 6th grade class. He is not autistic, he is not on a wheelchair with health issues, he doesn't have down syndrome or CP, his in the middle.
He can do activities that require consistency and have structure, but once you take that from him he becomes out of sync and refuses to do or learn anything. Mr.Hansen is a lousy teacher at Sunnymead, the man doesn't do anything, so the kids just sit around on the floor, wheelchairs, rubber seats or basically on the floor. There is not structure and the aides work at such a fast and unorganized way, because Mr. Hansen has no leadership. I've made my complaints to the special education department and all they suggested is to give Mr.Hansen more support and new tools to make his class better, well that was a waste of time because Mr. Hansen only does what he wants to do regardless of the support from the district and new tools from other teachers.
The district refused my son's transfer to another school which wold have been better but their reason was that they don't have the services that David needs or room at Landmark. They admitted that David's services or program are not available for 6th grade within the district so they felt it was for his best interest to be put with the severe kids.
You would think that if the district knows there is a problem in my son's class they would do something about it to avoid a law suit, you would think that the district knows that they are in desperate need of better programs/services for students like my son and would provide that kind of class environment.
So I'm asking anyone who feels the same way I do call the Board at Moreno Valley Unified School District and complain with phone calls, emails or letters. One voice makes a ripple but more voices makes waves.

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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