Rare Chromosome Disorder: My son is "Unique"

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

My son is "Unique"

After learning about my son's chromosome disorder and searching the web for some insight I came across the Unique website and after registering with them I was also linked to Facebook with other parents who have children with rare chromosome disorders. So I posted my introduction and it was amazing how many other parents understand you and from all around the world. This open ups a whole new world to me and my son, new information and research needs to be done so he can become the best at what is expected of him. So I offer this advice...Educate yourself people, they are so many types of disabilities out there that we tend to ignore the most rare becasue they are not in the spot light like Down Syndrome or Autistic, but never the less they are all special. Having a child with a rare chromosome disorder can be scary but parents don't give up, advocate for your child in every which way. I asked lots of questions and did lots of research to get where I am today with David and my challenge has just turned a different corner. Happy New Year to all of you and may the best of wishes come true for 2013.

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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