Rare Chromosome Disorder: August 2011

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.

Monday, August 1, 2011

Waterfall

So my son thought it would be funny to go into the bathroom and turn on the sink and let the water run continuously and play with it, I was in the living room watching t.v. with my family and the t.v. was pretty loud I did not hear the water running, so when my daughter went in to the restroom she yelled for me and the entire bathroom floor was flooded with water. While my son just stood in front of the sink with his hand in the water, laughing and smiling at us as we walked in. This was the second time he did this but today was worse, usually I am able to catch him when he just turned it on, so now we keep our bathroom locked for the sake that he don't flood it again. It was funny that he just finds it amusing and smiles at the fact that we tell him no it's bad. Oh well what can you do but just laugh with him.

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

Unique

Monday, August 1, 2011

Waterfall

Loving The Beach

Bowling

Technology