Rare Chromosome Disorder: David's communication

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, March 21, 2011

David's communication

My son, who doe's not speak at age 10, seems to find his own way of communicating with us. For example, he grabs our hand and directs it towards the item or thing that he wants, and he knows what he wants because I will give him one item and he would push my hand back towards the specific item. When he was born he did not cry and they had to spank him a couple of times to get him going, around age one he babbled and made goo sounds, at one time he even repeated the Spanish word for water "agua" for a while but then he just stopped saying it. He never did say any clear words, as for sign language, it was hard for him to use his fingers because he twirled his hands to often and crissed-crossed his fingers a lot. At school they used PECS to identify objects and ask for a specific object and that really helped him.Speech is still a goal in David's IEP and I will not give up trying to teach him how to respond with words, he understands what you say to him, as long as its a simple command with or without hand gestures, so I know that he will be able to learn, even though there is that neurological issue that his brain does not comprehend how to respond. I believe it is possible and if takes years for David to say his first actual word, I am willing to wait.

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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