Rare Chromosome Disorder: Oh oh he had an episode

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.

Tuesday, June 7, 2011

Oh oh he had an episode

When my son had water day at school, he came home in a very good mood, he just loves the water. So after he gets in the house I turned on the T.V. to Netflix and put on his Yo Gabba Gabba, he got very excited. Then he just became so over whelmed with his sensory that he got sentimental and began to tear up, whine and then cry. So I had to turn the T.V. off and hug him, sing to him and repeat to him that everything is ok. David has not had an episode like that in a long time, I also noticed that when he walks he wants to turn his foot inwards instead of flat, I acknowledge his new habits because they mean something to me, it could be a draw back or improvement just depending how you look at it. So I wanted to share this with everyone so that they are aware that behaviour in children with special needs has to be paid attention to, you have to assist your own child and learn from that so you can work with them to improve their daily lives.

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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