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.
Friday, June 24, 2011
Now hear this
David has some keen hearing, when he sits at the table his back is towards the fridge, as soon as I open the fridge and get out his juice, just by the sound of the twist cap he turns around and gets up to get his juice cup. I tried doing it quietly at one time and he still caught on, funny kid.
Thursday, June 23, 2011
Summer School
David is attending Summer School and he was pretty excited, he didn't whine or cry but very impatient when it came to the bus running late on the first day. The bus was suppose to arrive at 7:26 so we waited outside and within 15 minutes I decided to go back inside because it was getting hot. David did not like that but about 10 minutes later the bus came. David was on the bus and ready for a "hot" but fun day at school.
Sunday, June 19, 2011
Happy Fathers Day
We went to an Italian place to eat some good pasta, there this place where we live called Joe's and luckily it was not crowded, David does not do well in crowded loud places. As we sat David enjoyed the big screen T.V. in front of him and like always he watches the sports ticker. Dinner was nice until David decides that his done eating and wants to whine about why were still sitting there and not leaving, to our amazement we all actually got to eat. We left and my husbands realizes that he needs to run an errand and re-routes the home direction, David maybe special but he knows the route home and its not long that he see's that we are not headed home and begins to whine even more. Slap on the music, "Alicia Keys" is the CD of the day for him and that calms him down. His cranky mood has been decreasing lately, he has gotten to his old self again, being lovable and hug-able boy that he usually is. Happy Fathers Day to everyone and be kind and patient to the little one's in our lives that don't know any better.
Monday, June 13, 2011
sick and sad
David has had the sniffles since Saturday at first I thought it was his allergies so I gave him his allergy medicine, well this morning he woke up with a runny nose and slight fever, he was also cranky which tells me that he does not feel well if his cranky mood last all day. So I gave him his medicine for his cold because he loves to take medicine it makes it so much easier to tend to him when his sick. All day he has been whinny and complaining about what is on television and his dvd player. He refused to take a nap and was not as hungry as usual he just wanted to snack a lot. So bed time it is for Mr. cranky pants, put him to bed at 8p.m. instead of his usual time 8:30. So we'll have to wait till tomorrow to see if the Nyquil did its job.
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.
Saturday, June 4, 2011
Say Cheese
When David was a child it was easier to take photos of him because he seem to be "in the zone" a lot, for example watching T.V. or playing with a toy. Since he has gotten older he is very spastic in his movements, unintentional movements by his hands or just his swagging back and forth. So when we take pictures of David sometimes we get lucky and other times we just get a smudge of his image, it's not easy to be photo ready but it is funny at times. David can care less if the camera is in his face, he thinks its a toy with the red flashing light before the photo, he see's his image in the viewer and thinks its a T.V. David is curious in his own way when it comes to taking pictures and I love that about him.
Thursday, June 2, 2011
New Blog Name
I updated my blog name so it would be easier for people to locate it, please feel free to follow and learn something new about Fragile X.
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