Rare Chromosome Disorder: Happy Fathers Day

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 19, 2011

Happy Fathers Day

We went to an Italian place to eat some good pasta, there this place where we live called Joe's and luckily it was not crowded, David does not do well in crowded loud places. As we sat David enjoyed the big screen T.V. in front of him and like always he watches the sports ticker. Dinner was nice until David decides that his done eating and wants to whine about why were still sitting there and not leaving, to our amazement we all actually got to eat. We left and my husbands realizes that he needs to run an errand and re-routes the home direction, David maybe special but he knows the route home and its not long that he see's that we are not headed home and begins to whine even more. Slap on the music, "Alicia Keys" is the CD of the day for him and that calms him down. His cranky mood has been decreasing lately, he has gotten to his old self again, being lovable and hug-able boy that he usually is. Happy Fathers Day to everyone and be kind and patient to the little one's in our lives that don't know any better.

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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