Rare Chromosome Disorder: Update to his Education

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, January 2, 2013

Update to his Education

Spoke with David's Advocate and we are in the process of filing the petition for the hearing mediation regarding MVUSD not giving him his one-on-one aide that I requested and also to make some new demands due to the insuffient teacher (Mr. Hansen) at Sunnymead Middle. Regardless of the re-training and support given to this teacher and staff it does no justice to keep my son there for the next 3 years till he gets into High School. David would basically enter High School lost and behind if he stays in Sunnymead Middle, so I have requested his transfer out to anothe Middle school with a better teacher and staff. My request are simple and reasonable, the teacher doesn't do the PEC system (see You Tube under PEC System phase 1) which is on his IEP (Individualize Education Program) becasue he is just plain lazy.
Five months of this un-necessary battle, lack of sleep and stress will finally come to an end soon. Good news David is able to adapt to a communication device to use a soft ware applicaiton to communicate so I requested that he get an AT Evaluation from the Psychologist.
I walked in 3 weeks ago to pick up my son for a doctors appointment at 2:45, while entering the room I saw my son sitting at a desk by himself touching a texture puzzle while an aide sat on top of the table watching over him. The other two aides were talking to the Substitute because Mr. Hansen had left. Kids just kind of scattered everywhere, one by the door laying on the floor playing with a guitar toy, one sitting on the floor (which she is not suppose to be, she has CP) which she should be on a bean bag personally requested by her parents. There was no curicculum being done just socailizing, so as I got my son ready to leave Mr. Hansen walks in and is suprised to see me. "Oh I was expecting you this morning?" he said, of course I didn't make it in this morning, they want me to check in before I show up to his class. Before I just walked in with out notice and after signing in at the front office; now since I filed the complaint I am asked to call ahead of time and was asked to wait till January to observe the class because they are still getting things together for the transition. From what I saw 3 weeks ago I see no progress, so when school is back in session January 14, 2013 we are suppose to have another "special" open house for us parents to observe the class room as a new and trained place for our kids.....blah blah blah....I am so done with these people they have no clue as to what makes a great program for these kids because if they did it wouldn't involve Mr. Hansen.
I should be hearing something about our hearing date soon and hopefully by February he will be at a better school where they value the education for special needs. I tried to get other parents involved and to my surprise only one is making noise just like me, the other parents I feel have fallen for the Districts deciet and lies of how this new training will be better, its sad but alot of parents prefer not to fight it's just too dang stressful and we already have to deal with our disbaled kids. One thing is for sure Jeff Frazier (Special Education Assistant Director) needs to go, that guy can care less of what the parents want, he has such a one track mind and never supportive of any issues that involve our kids. I mean how hard can it be to improvise, adapt and LISTEN to our concerns, not just listen to us complaining but take into consideration the child first.

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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