Being on facebook, has really opened my world to the Down Syndrome community. It is so wonderful to make friends, see how their children and families are doing, and even meeting them in person. They have become a wealth of knowledge and information and my second family. We all learn and grow with each other on our journey with Down Syndrome.
One thing that has come up ALOT lately, is new blood testing detecting Down Syndrome in the baby. I have mixed feelings on this. My doctor sat me down at 12 weeks along and give me a list of all kinds of tests I could have done while pregnant with Mayson. After he gave me the list, his first question to me was "Will any of these test change anything about your pregnancy?" I said, no, of course, and so he said "then why have them!"
Why this new test maybe a great alternative to an amnio ( if its as accurate as they say it is) due to the chance of miscarriage. I also wonder how many more will use these results to have abortions. The rate is already sky high...um like 90% sky high. That right there makes me want to barf..... because as I sit here and write this, my daughter sits next to me and plays with her baby dolls, talking to them, swaddling them, pretending to feed them..just like any 5 year old would. Just because she has one extra chromosome, should of never been an issue of keeping her or not.. That is not my decision or anyones, only Gods. Her life is just as precious and sacred as anyone's! I couldnt imagine what my life would be without her.
Its hard to believe that I already have the kids school pictures back from this school year. Not to mention this is Jaydens last year for school pictures. Next year it will be senior pictures...eeek!!!
![]() |
| Jayden, 11th grade |
![]() |
| Rylee Jo 8th grade |
![]() |
| Mayson - preschool |
Back when we had Mayson's IEP in April, there were several things the team and I disagreed with. I was PRO preschool again, and they were PRO kindergarten.
One of my main reasons I was for preschool was Mayson's fine motor skills. This sweet girl still cannot draw a line on command, let alone even want to hold a pencil, crayon, marker, glue stick or scissors. We are still trying to get her to use a spoon and fork correctly. I requested that our local AEA re-evaluate her for OT services since they had denied her one on one the last year school. They agreed to do the evaluation which took a few weeks to do. We all met back for her IEP again at the end of May, and their conclusion was that after working several times with her one on one, they did not see any improvement so, they would not give her one on one therapy at school.... ARE YOU FRICKEN KIDDING ME?????? Basically, they are telling me they are giving up on her.... its not worth their time. I am stunned.
We do private OT and I LOVE our private OT but we only get to see her every other week now that Mayson is in school 4 full days. Our state is supposed to provide our children with services at their schools once they turn 3. My girl is only 5 and is already slipping through the system. They are denying her her rights. It doesnt seem fair. She has so much potential and they are already giving up on her.
MAKES ME SICK!!! THIS MAY GET UGLY BUT I WILL KEEP FIGHTING!!!!!!!!!!!!!
end of rant...
| Mayson and her music therapist Amber who we also love! |
Thanks to my awesome friend CJ for doing my blog redo for me:) I love it!!!!!!! Now, if I could find more time to blog!!!!






Sunday, October 16, 2011



