In 2005, a BSC (Behavioral Specialist Consultant), who was working with my son, told me “You are your child’s biggest advocate.” I took this to mean that I am the one who is going to have to fight the hardest for what is best for my son. I just didn’t realize how hard the fighting would be.
My son was diagnosed with Autism in August of 2005, in the fall of 2011, after an IQ test, it was determined that he is also mentally retarded – his IQ came in at 55. Christian is the only child my husband, Bill and I have both diagnoses depressed us and had us wondering what kind of future lay ahead for Christian. Raising Christian has been severely challenging mentally, physically and spiritually.
I don’t want this blog just to be about my “Raves and Rants”, I would like to share raves and rants from others in the autism community about their experiences, challenges, obstacles and triumphs. We can all learn from each other and I sincerely hope that this blog can encourage others to speak out about any injustices, struggles and or obstacles they are facing in the world of autism. Warning: I will more than likely be ranting a “little” more than raving.
Topics I plan to “Rave” about:
-Accomplishments/milestones that my son makes at home or at school and or funny things he says or does.
-National publication/local stories of inspirational pursuits of autistic kids and/or parents.
-Appreciation and recognition of services, individuals, fundraisers, events and/or organizations working to improve the quality of life for kids with autism and their families.
-New treatments/medications/products available to help improve the lives of autistic kids and their families.
-Share stories of other local autistic kids’ funny stories/accomplishments/special talents and parents’ viewpoints on living with autism in general.
Topics I plan to “Rant” about:
-Why are there more and more cases of autism? Is it the vaccines or something else? Does anyone really know the truth or is something that is being created to generate money? The vaccine issue is not one that I really want to get “into” – I have my personal feelings about that, there are reports that say, they do cause it, they don’t cause it, etc. – until I get more information about that, I want to hold off on that argument from this blog for now.” However, I do encourage readers to comment to me on their views, I just do not want write a blog, now, on my views, since I feel that I do not have all the facts – it is something I get very emotional about and angry about, and want to rant on that when I feel I have all the info I need.
-Criticism on expressing my honest views about raising my son.
Yes, my son cannot help the way he is – I get that, but you deal with constant screaming, banging, hitting, spitting and you tell me how I am supposed to keep a smile on my face.
-Incompetent school programs/agencies/other services and the “backlash” for expressing dissatisfaction with services.
I will also discuss and hopefully inform you about specific local programs and agencies that REFUSE services to children who need the service because they don’t want to deal with certain “types” of children – children who are harder to service than others. I will blog specifically about that soon. I will be, specifically, be speaking up and speaking out about agencies and schools who not only mistreat autistic children, but how they mistreat and manipulate the parents of these children. Oh yes, it happens and I will blog all about it.
-Expressing dissatisfaction with school programs or state agencies that provide me services.
Example: Remember the BSC that made that statement to me above? Well, back at that time, the TSS (Therapeutic Staff Support) that was working under her and for us was horrible. She was constantly late or just didn’t show up. When she did show up, she just sat on the couch and watched TV. So, I complained and requested another TSS. Long story short – when I canceled these services this BSC said that I should consider using another agency since I complained, requested another TSS and then canceled. I was being “punished” and labeled as a “problem parent”. This leads into another topic I will often blog on, I will call: “Blame the Parent”.
-Striving to personal and professional life that is not related to autism and being criticized for it.
Oh yes, people are very quick to tell me that, even though I do live, eat and sleep Autism, that this should be the ONLY focus of my life, and that it SHOULD be my only passion in life. No, I don’t want to close my web development business down and go back to school for a Behavioral Science Degree; nor do I want to discontinue my Women4Women’s group that I founded. I think that it is great that other parents have done that and have made Autism their life’s work, but please DO NOT put that expectation on all parents of autism. It is unfair and insensitive.
This blog isn’t mean to offend anyone, it is meant to discuss issues in the autism community that aren’t normally discussed. Autism is not always “warm and fuzzy” and I am not a “warm and fuzzy” writer – even though it seems society wants to just read “warm and fuzzy” stories. I like to speak the truth and in turn educate people on what it is like to raise an autistic child. Not all parents struggle like I do, I understand that, but a lot of us do struggle and because we admit our honest feelings people have a tendency to sharply criticize us. It’s unfair and insensitive. I welcome all comments and feedback. Please feel free to send any emails to firstname.lastname@example.org.
Next Blog – Rave: “Special Warriors”