Tuesday, February 16, 2010

If you love someone with Autism put down that chocolate bunny!

Lindt partnership with Autism Speaks


K said...

Quick question - how did you find out that your son had epilepsy
You found out about epilepsy just a couple of years ago - right?
What alerted you

Queenbuv3 said...

K-Stephen had an EEG to see if there was any seizure activity when he was diagnosed and none was found.

About 3 years ago he had a seizure at the pool while he was at school and it wouldn't stop. They had to give him meds in the ambulance to stop it and he was admitted to the hospital overnight. They gave us the option of putting him on anti-seizure meds but we were afraid of the side effects and Stephen's inability to communicate if he were having any.

Two months in a row he had a seizure around the same time. When we started to see a pattern we decided to put him on meds. After his diagnosis and we learned about the different types of seizures and we think he might have had some before. All of Stephen's seizures, except for the last one, started with him being unresponsive to being spoken to or being touched, vomiting, turning blue and then wanting to sleep once he came out of it.

People can have absence seizures where they are staring off and unresponsive to verbal or physical stimuli. This type of behavoir can also be common with Autism so sometimes it's hard to tell especially in young children.

Queenbuv3 said...

Clarification-He had his first EEG when he was diagnosed with Autism and no seizure activity was found. Once he had the episode at the pool and he was admitted to the hospital we made an appointment to have another EEG done. He was diagnosed with Epilepsy just from the seizure that he had at the pool. The EEG confirmed that he was having seizure activity.

K said...

Thanks for the detailed answer - very helpful
My SIL ( DH's sister ) has grand mal seizures so I always worry about it for R
OUr neurologist says that seizure activity should be suspected when there are developmental regressions ( even when other signs like the staring off etc are not there ) so I keep an eye on that

The McNultys said...

Hey Beth, I posted something about Autism Speaks and seizures last week...did it come through? I was having big computer problems.


Queenbuv3 said...

The McNultys-Do you mean you posted a comment on one of my posts? If you did, I didn't get it on my end. Was it on this blog post or another?

The McNultys said...

It was this one. That's ok. I was just wondering why "Autism Speaks" sucks? I only know a little bit about them, as I have kind of taken up with our local organizations for autism and alternative therapies. I have been seeing the Lindt bunny everywhere lately, but I haven't seen the logo or information about Autism Speaks on them or even near them!

Also, we're having our girl evaluated for seizures. She has a LOT of visual stimming - particularly eye fluttering (she doesn't do the "flapping" that seems to be a "hallmark" stereotype) and seeking out light and dark contrasts. I don't think she's having seizures, but if she is, I imagine them to be quite mild at this point in time.

I was wondering...did they have to sedate him in order to run the necessary tests?

Hope you're well.

Queenbuv3 said...

The McNultys-I personally don't like Autism Speaks because they portray Autism as something horrible and put a lot of negative ideas and images about people with Autism in the media. They made a video that is just horrifying. This link will take you to an article and the video if you want to see it.


They also take a lot of the money raised and pay their top executives tons of money and give very little directly to people with Autism and their families. Most of the other money goes into research to find a "cure". I believe Autism is genetic and the "cure" they are seeking is a prenatal test which would result in many people with Autism being aborted. That has been the result of genetic testing for Downs Syndrome. 90% of fetuses found to have Down Syndrome are aborted. Also, I just disagree with the need for a "cure". My son is severely affected by Autism and will be dependant on others for the rest of his life. We still love him and accept him just the way he is and beleive God made him this way for a reason. God doesn't make mistakes. Autism Speaks does not have a single person with Autism on their board of directors. There are plenty of high-funtioning people with Autism that they could have for very valuable consulation. How can an organization that is supposed to be advocating for people with Autism not have anyone with Autism involved in making decisions on what to do with the money raised for people with Autism?

If you Google the search phrase "Autism Speaks critism" you will find plenty of Articles on the subject. Here are some other links to articles.