Rare Chromosome Disorder: Tantrums

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.

Sunday, March 27, 2011

Tantrums

This week David has had a rough time, he is going through his sensory overload tantrums-that's what I call them. What ever is on television, depending on the sound and noise it brings out, David will start to cry and scream as if someone had just spanked him. He hasn't really wanted to eat as usual and he scratches you out of fear or out of anger because of the noise he is listening to or what he has just watched. I remember the Disney movie intro would make him flip, so I am assuming that certain pitches of sound make him cry at some vulnerable moments. David has to be talked to in a calm voice and comfort him at the same time, take him away from the noise and put him in a quite room for him to calm down. He use to do this when we would go out to eat, so you can imagine how difficult it was for him to be around all those people and have his sensory go out of whack. I have the patience to overlook the fact that he is pulling my hair, screaming and crying at the same time I am trying to leave the place. I am not embarrassed at what my son does in public because as far as I know it he is normal in my eyes and should not be treated any different then any other child.

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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