Rare Chromosome Disorder: July 2011

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.

Saturday, July 2, 2011

Guardianship for your disabled child

I read on my quarterly magazine from The National Fragile X Foundation a report about guardianship for our children who are disabled and turn 18. It stated " At age 18, children become legal adults, which means the parents are no longer their legal guardians, even if the children have disabilities". That kind of gave me a rude awakening, I had no idea that my husband and I would still have to file for guardianship for our son. Take the steps early on so that your child remains part of your family and not the courts, they will always need you to protect them and love them.

Non stop eating

David has this thing that he likes to open the fridge and grab for what he wants, if we don't keep him away from the fridge he will keep asking to eat. My son will non stop eat if you let him, so teaching him to control his eating habits was a challenge. We started him with small portions at a time and then got him into a routine of breakfast, lunch, dinner and snacks in between. He use to just put food in his mouth and would stuff his mouth without knowing it, so teaching him about good eating habits was important. Now I am so happy to see him sit at the table and control his eating, we still have to monitor him because if he finds food next to him he will snatch it! So I posted this web page from Fragile X.org and I hope by reading it you will understand how sensory is important to kids with fragile x and how we as parents have to monitor all habits and just go with it and learn from it.

Friday, July 1, 2011

National Fragile X Foundation News: Stop the Stuffing

National Fragile X Foundation News: Stop the Stuffing: "by Tracy Stackhouse, MA, OTR and Sarah “Mouse” Scharfenaker, MA, CCC-SLP From the Spring 2005 Foundation Quarterly We recently had a 2-ye..."

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