Tuesday's gone Blog Hop

Ok so we are supposed to pull an old blog post and re post. If you wanna join the button is towards the bottom of this blog just click on it.  This was actually my very first post on this blog.

the long journey for answers

Growing up we didn't notice anything different with Roger. Sure he had some strange interests and seemed more interested than others but hey that's just him. Maybe we just paid a little more attention to his sister because she didn't talk until she was 5. He had his quirks never wanted to be affectionate and I don't think he has every once said I Love You to anybody. He went to the same school from preschool until 5th grade. It was a small private school so many of his friendships just kind of happened no one really had to try. Maybe that covered it up. We really do not know why everyone seemed to miss it for years.

At the start of 5th grade his teacher noticed a few things. He didn't seem to be able to get what he wanted to say out, would be upset by writing, just seemed to be struggling this year. Then we moved in the middle of 5th grade and that's when everything became clearer. When he was put in a new situation he couldn't make friends he didn't know how. Its only this year the middle of 6th grade that he is starting to have friends that occasionally come hang out with him or he will call. But let me back up a little.

Last year in Feb Roger had a melt down in class. No one knew what triggered it but the teacher believed it was a seizure so I was called and that began the line of doctors. Neurologist, cardiologist, MRI's, CT scans, EEG's including a overnight stay at children's. Pretty much we have been in every department of Children's National Hospital Looking for answers. This past Dec we finally made it to the neuroscience department and he was diagnosed with Autism which we all expected for a while but it just wasn't official yet.  At least now we have some answers and have an idea of where to go and how to help him.

Eligibility Day

Today is our eligibility meeting with the school for services, well actually its the 3rd or 4th one. Last year he didn't qualify because they said they did not know what to do so I went and found out. The second meeting they wanted to ignore all the private evals that were done. I guess it's hard to have it pointed out that your speech only did a partial evaluation not a full one so she missed ALOT!! Met with the school psychologist and it sounds as if she is willing to push harder for the IEP not another 504 that they don't follow and really it doesn't do a thing for him. Some of the ideas they came up with at the last meeting months ago we tried but they didn't work but they want to keep trying it. So we are hoping that he is found eligible and can get an IEP at this meeting. If not I guess we go to the school board next. 
I already had school officials tell me social skills are not important, umm ok.

Happy Mother's Day

Happy Mother's Day to all the mom's out there:

A Special Kind of Mother's Day

Have a great day.

Guest Post

 Visit my post at An Autism mom believes in Her Child's Dreams

If You want to sumbit your own:
"This year, I'm inviting autism moms to submit a guest blog to be published on this site during the month of May. Here are the details: Autism moms (or the people who love them) are invited to submit a guest blog of up to 1,000 words. These should be personal reflections on motherhood and autism rather than essays on the state of the autism community, public policy, etc. Photos and short author bios are welcome but optional. Be sure you have the rights to any images and can provide a credit and caption. If you are already a blogger, please send me an original piece that is NOT presently on your blog, along with a link to your blog so I can include it in the post."

Email Lisa at autism.guide@about.com.

Disturbing

This is very disturbing to me:  callous disregard
That link is going to take you to a blog entry about the suspension of a medical doctor in Maryland. This doctor also hold licenses in many other states and is connected to a known autism center. Court docs have the names.  He took advantage of desperate parents and put their children at risk.  Through the blog you can see the actual court papers and the charges against him.
To sum it up he was giving a drug called Lupron to children. This drug is not approved in kids and is mainly a prostate cancer drug. It is also used to chemically castrate sex offenders. It will affect the development of ovaries and testes and is not approved for use in autism.  in 7 of the 9 cases examined the kids had autism, it was always stated that they had early puberty (the only approved use for Lupron in kids) even though none of them did.  One of the doctors statements from the court papers in regard to using Lupron in kids is just chilling "If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone" 
I will let you read the other blog post and court papers yourself.

Asbergers Downloaded

This is one of Rogers new books.  He likes that it is set up like a dictionary and explains things like bullying, friends, chat rooms, apologies, alcohol, and family in a easy to read and understand format. you can click here to see an example of the book. It is meant for teenagers but Roger understands what most of it is saying.
The definitions in the book are given by a mother and son.  They each give there own take on what something like "Apology" means. Not only does it describe what it is but says that you should accept and no one will see you as less of a person if you apologize yourself.

Autism Awareness Month

Autism awareness month is over.  People changed their light bulbs and profile pictures on facebook.  But even though the month has ended lets keep the conversation going.  New families join the autism community every day.  While they navigate the new world they are in lets be respectful and now push our views on them but help where we can.  Lets get the adults with autism front and center. Lets start listening to their stories.  I know they are out there, autism doesn't disappear at age 18.  While we are having the conversation on what works and what doesn't lets talk to the people who have lived it and they know better than anyone.  Most autism shows that were on this month only showed the parents and the most severe cases, we need to show it is a spectrum.  People have warped views of autism.  I don't want people to think everyone with autism is either intellectually challenged or a genius that's just not true. The biggest misconception I hear is that people with autism don't have emotions. Yes they do the thing is they don't always understand their own emotions.  Just because someone cannot read another person does not mean they do not feel.  First and foremost we must remember we are talking about people, people who deserve to be respected and loved for who they are.  The first step to acceptance is awareness and it can't stop just because April is over.