Rare Chromosome Disorder: April 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.

Thursday, April 28, 2011

Love the band

Today David and I went to my daughter Sinclaire's Spring concert for band, David loves listening to them, while eating a jelly donut that I bought for him, he was relaxing. Until I got up to throw away the napkin full of jelly, he grabbed my arm and looked at the napkin as to saying "where are you going with my donut?","no more" I respond to his gesture and he smiles and lets go. There is no getting around David when it comes to food but he did love the band and enjoyed the evening.

Wednesday, April 20, 2011

Sleepy time

Today after school David came home tired and he toke a nap for two hours, well that nap only gave the will to stay up longer. After his bath and brushing his teeth, I put him to bed as usual and when I went in to his room to check on him, he had gotten out of his room and entered mine. He was in the dark playing with his piano and musical light toy, laughing and sitting on the floor. So I gave him 30 minutes more to play and then I put him on my bed and turned off the light. I went back to the living room to watch the Laker game and within 10 minutes he pops out into the living room playing peek a boo, he knows he is suppose to be in bed, so playing peek a boo is a way for him to get us distracted. Well this time his peek a boo will not work with me, so while walking him back to my room for bed he tried the peek a boo one more time, no chance. Good night, my love.

Monday, April 11, 2011

Back to School

Well spring break was too long, but I had a chance to take my kids to a museum and Chuck E Cheese. David really enjoys the Telly Tubbies ride, he just smiles and cracks up on his own. So this morning David tried to pretend that he was asleep, but I just had to get him ready so he doesn't miss the bus again. Yawning and whinning off to the bus he goes, yes! I got him on the bus, so now I won't be late for work. Toke my daughter next to school...she forgot her Clarinet and I had to turn back, which just made me late for work. So much for my achievement this morning.

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