Rare Chromosome Disorder: Halloween

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.

Saturday, November 5, 2011

Halloween

This year was tough, the recession did not get me in the mood to decorate for Halloween and to top it off I had no money to buy David a costume, luckily last year I bought a skeleton costume on clearance for 3 bucks and put that on him. It did fit a little snug and I knew that he would not be wearing this costume next year. I toke him to a Church festival near my house that they have every year, he got to play games and get candy. After just being there for one hour he began to get irritable and just wanted to leave, he was tired and I decided to take him home. This year was a little sad for me, I only had two of my kids with me this Halloween, my other two girls are all grown up and on their own. It's funny how you see the changes of the "torch" when one by one leaves the house. My youngest daughter Sinclaire is taking charge of her little brother now that her older sister Elise is no longer living with us, she is at college and living with her biological dad. I am grateful for my kids and how they live up to the responsibility and care for their little brother.

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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