Wednesday, December 23, 2009

My first post...


Alex at 2 in Tampa Florida



Hello to everyone that I hope will soon be enjoying my rambling thoughts. I decided to start a blog about Autism. In the past couple of months my three year old son has been diagnosed with High Functioning Autism, denied desperately needed school services, and began private therapy for language and O.T. It has been a roller coaster but I expected it to be. Now I sit here and write this and wonder what the next step in the battle will be, because yes I consider this a battle. Why should my son be denied a IEP, when he so obviously needs the help, so I guess my next step is to fight, though I can't say I'm looking forward to it!

I guess I'll tell you more about Alex and the events leading up to his Autism diagnosis. Almost two years ago I was pregnant with triplets, to make a long story short I developed TTTS, lost two of my triplets and delivered a extremely premature infant, Elijah (read his story here).  During all of this Alex turned two at a Tampa Florida Ronald Mcdonald House 12 hours away from home. I decided after our second month there that I would take Alex home to be with my parents. I stayed a week with him and flew back to Florida. During this week I took Alex for his 2 year checkup and he finally had his MMR vaccine. Now I'm not saying that this vaccine causes Autism and I'm not saying that it doesn't, I really don't know.
The first odd thing we noticed with Alex was that suddenly he couldn't tolerate bright light.  My mom noticed this, and he had his first big meltdown on her at Wal-Mart. After I returned home from Tampa we had Alex's eyes checked, the doc said he couldn't find anything wrong.
During the next few months we were pretty much prisoners of our own home due to the baby's RSV risk, when we finally ventured out during the spring I started noticing small things. Like the fact that Alex was turning into a sensory basket case, that he didn't eat certain textures, and when I started taking him to the library reading group I noticed he avoided other children, acting almost afraid of them. During one of these library visits the group made cute little aprons, when it came time for the children to put them on and have pictures made Alex refused, he just didn't like the way the apron felt. After this I mentioned the behaviours to his doctor, and here we are.

I will write later about what has happened to us since the diagnosis. Including the reason Alex was denied services and the IEP meeting from H__! The one where I was reduced to tears because perfect strangers who had observed my son once for about a hour were trying to tell me that they knew more about him then I did, yes I'll save all that for later because I have to run! You know how it is....

1 comment:

lbrownblack said...

Hi, Denise! If you haven't heard of Elaine Aaron, you should read her book entitled The Highly Sensitive Child. It's not exactly about autism, but, it helps to see that sensitivities are all part of a spectrum and some suggestions on how to deal with them. I also love Temple Grandin (she is a high functioning autistic, whatever that really means)- and is very successful. check out her book entitled Thinking in Pictures. It really helped me to relate to and understand a lot of my children's sensitivities and my own sensory mixing issues! Good luck to you and a dose of compassion from the Black family, only neurotypical by diagnosis, but, special in our own sensory ways!