Rare Chromosome Disorder: It's gettin HOT in here

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, June 30, 2013

It's gettin HOT in here

After spending a very Hot day at Splash Kingdom in Redlands with the kids, we began to head home but while driving on the freeway and having my nice air conditioner on, it suddenly became humid? NO!!!!! I lost my air conditioner and while on the freeway, I can't roll down the windows all the way because David freaks out with the massive wind blowing at his face. So when I got the chance to exit and take the surface streets I was able to roll them down at least half way, I began to mess with the automatic windows just so I can get the right amount of wind that David could handle. Sweating, like I just ran a marathon, I am struggling to get these windows right...and finally I did. David was starting to look as if he just walked out of the shower, it was crazy hot...so I drove up to the nearest drive-thru and ordered David a chocolate shake and us some drinks. David was a trooper though, he drank that shake till the last drop and not once did he put the cup down, sweat coming down his nose and forehead, it didn't matter he was enjoying that shake. After 15 minutes of this torture we finally made it home to a cool air conditioned home...ahhhh.

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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