Rare Chromosome Disorder: First thought

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.

Thursday, February 24, 2011

First thought

I decided to create a blog to talk about my experience with special needs children. I have a son who has Fragile X Syndrome, it is a genetic disorder that is passed on from the mother to her sons, daughters are only slightly affected because we have two X chromosomes as to boys who have X and Y chromosomes. Referring to fragile x, when the x chromosome is affected, causing developmental delay. I would like your stories, opinions, news or information from anyone who has children with special needs. My blog gives ideas of how to care for our children daily and setting goals.

1 comment:

UnknownMarch 1, 2011 at 10:48 PM
Today my grandson found my daughters old VHS movies and he wanted to watch Lion King so bad...so he kept asking and she kept saying "wait I have to rewind it",...he looked at her confused, tilt his head and said, "whats rewind?".
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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

Unique

Thursday, February 24, 2011

First thought

1 comment:

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Technology