Rare Chromosome Disorder

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.

Wednesday, August 21, 2013

Reaching his goals

David's teacher at Landmark Middle has been keeping me updated on his toilet training, David has been getting better at notifying when he needs to go! That is awesome, this is just the beginning of what will be a long road for David in reaching his goals for potty training. If he keeps this up and through hard work, hopefully he will be trained by high school or at least 10th grade. David is very fortunate to have such a wonderful teacher and excellent staff at Landmark...all that stress and issues with the district was worth it, his education is so important to me and I will not let anyone define him as a second-class student, he is important just like every other student that attends school. Word of advice parents: don't ever give up, don't let the school tell you they can't do what you asked for your child and always stay postive.

Saturday, July 13, 2013

Neuromuscular Appointment

So about a month ago my son went in to see his Pediatrician and I asked him about David getting checked for scoliosis, he gave David an x-ray and we left it at that. He has been referred to a Neuromuscular Doctor and I am assuming that David might have scoliosis...here is another rock to climb in this already precarious situation, if it isn't one thing its another. Lets pray that he only needs a brace and not surgery, depending on the results I get next month.

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.