As I was looking at my Facebook posts, there was a certain post that got my attention. This made me feel frustrated and angry at the same time. The story was one I’ve read countless times. It’s the story of their young child who was diagnosed very early in their development. The parent is concerned that their kid will never talk to them or do anything else because the child was labelled as lower functioning autism. As I read the testimony, I knew a good, sound, possible answer that might change her child’s condition for the better. I even wrote a blog entry on the very answer that would really would have made a huge difference. So with this…I’ve made a decision – I’m looking to either create YouTube or a Podcast.
One of my biggest frustrations has been that no one seems to be listening. When I got on to Reddit, it was no different. They wanted to bitch about their problems in dealing with autism/asperger’s but, they didn’t want a real answer that maybe life changing. I was even suspended from the damn media page because I was using my book as a device to help people deal with their situation! So I happen to catch a youtube video of Dale Roberts and Julie the book broad talking about the impact of visual/audio communication to a reading audience. So that was when I decided I’m going to do that!!! I’m not sure which one I will pursue yet but, IT WILL HAPPEN and I will let everyone know who reads this blog. https://youtu.be/ncLA1VnYZWo I’ve attached the video if you want to see it.
I completely realize that June is the official month of PTSD awareness and PRIDE celebration. I’m glad to see that these two important things in our society are getting their just dues. I’m not here to knock the PRIDE people or the PTSD folks, my beef is with my own cause…Autism. We’re now more than half way through the month and this really feels like a TRUE month long party or ‘active’ educating the public on these causes. So my question is…what the hell happened to Autism Awareness month back in April?!!!!! I’ve noticed each year, this gets less and less attention. The month starts out great with the international day of autism, but after that the flame goes out and the meager smoke snakes its way in the air. It’s not like we have just have a few organizations. Unless there is a renewed story line about the absurdity of immunizations causing autism in children again, we get put back on the shelf until next year.
If we really want to change and create a stronger voice then we need to look at the Pride folks. I have to give them all the credit in the world, they know how to get a message across and hold it all the way through the entire month! They have parades, guest speakers, news stories with educational material, flags, and lots of merchandise. Twitter, Facebook, Instagram and many other social media sites pour out all kinds of Pride and PTSD information and affirmations. The bottom line is we need to do better. I’m not sure if we’re fighting hard enough or many in main stream media tend to ignore us after awhile. Are we afraid to come out of our own closet? Listen, the bullying at work or anywhere else will not stop until people understand our condition. The public needs to be educated on us and our disability. I just feel like our cause has lost a lot of its steam. The only thing that seems to stick out are charitable run/walkathons for autism. That’s great we do this, but it just doesn’t seem enough. Again, I believe we need to steal a page from the Pride group and fly those flags, have all of that memorabilia stuff on, have those parades; get famous people who have our condition to step forward and talk to the people like the Temple Grandin’s, Darryl Hannah’s, Dan Aykroyd’s! We’re getting a bad wrap and our situation is getting worse. Health care, Life Insurance, the Job Market, are just a few examples were we are losing the battle. We need to better plan and execute OUR time of the month!
Has you’ve already read, I’m on the Autism Spectrum Disorder (ASD). On social media sites like Facebook and Twitter, not only am I a part of these sites, but I also join groups that deal with autism and I am friends with people who are either on the spectrum themselves or the parents of children with this disability. Because I have to keep my true identity to myself for legal reasons, I’m having a hard time deciding how to respond to these people who are desperate for answers. There is some information I know that might help and I could give my real life examples as to why I tell them these things, but I don’t want to compromise everything I’m working for with my book. So I will share an actual experience I had to help anyone with a low-functioning autistic child.
So I’ve decided to give some rather helpful advice on my blog without trying to disclose my personal information. One of the main things I read from people are the parents who are dealing with a child that is lower functioning. To any parent who has a low functioning child on the spectrum is if their brain has not fully developed yet; meaning a female tends to fully develop by 21 and a male by 25, then there might be an answer. This is NOT a cure because, as of yet, there is no cure for a neurological brain disorder, but there is a medication that might help. First, I need to let you know that I’m not a doctor or a pharmaceutical rep, I’m a Special Education Teacher and I know as a witness what this medication did for my child. The medication is called Namenda (Brand Name) or memantine. If you look this up, you’re going to find a lot of information with this medication for patients of Alzheimers. The drug is to help people with memory issues which would be your neurotransmitters and the like. When my child was born, doctors told us that you will have to take care of your child for the rest of your life because she is low functioning. However, another doctor was doing a study on the use of Namenda for children that are on the lower end of the spectrum.
Our child was one of those selected back in the 90’s. So we decided to give the medicine a chance and though it took a few years, we started noticing an increase in activity in our child. So much so that her NEW diagnoses changed from a lower functioning to a higher functioning autism. The medication worked. She had started taking the medication at age 6 and kept taking the medication for 7 years. This was finally stopped because our daughter had made such huge strides that she didn’t need the medicine any more. You must have 3 members on your team to make this work – 1. A Child Psychiatrist who understands autism 2. A Child Psychologist who understands autism and 3. A Pediatrician who understands autism. YOU MUST TALK TO THE TEAM OF DOCTORS BEFORE TAKING ON ANY MEDICATION!!! Remember that boys and girls on the spectrum are not the same! The symptoms are not all the same for each gender. We still have our rough days with our daughter, but she has graduated high school and college! Do your homework…check this out for yourself.
This site forms part of So, You’re Autistic (SYA)? at the University of Kent, a support programme teaching those with a diagnosis, awaiting a diagnosis, or self-diagnosed HOW to be autistic – to understand what being autistic means for YOU. We at SYA? are also consultants delivering workshops on autistic experience, neurodiversity, & stigma-reduction