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 kimandbill1@comcast.net.
Next Blog – Rave: “Special Warriors”
Kim this is a well needed blog for us Autism mommies. Thank you for putting this together!
Thank you Jean!!!!
read your blogs on Rants and Raves – Didn’t have the info I
needed to converse with you about lending support -
my son had Asperger Syndrome, ADHD and seizure disorder – many varieties and some rare too – I truly understand the lose of many family and friends in regard to caring for my son – there are many of us out there who can be a support to you, your family and Christian – hang in there ur not alone – not sure about the programs but Thomas Jefferson Hospital in Philly may be able to offer you some info – I sincerely understand what you are going through – I was fortunate to get a few hours of broken sleep – and my son would leave the house sometimes while in the thro’s – many adjustments … blessed for 30 short years
Thanks for being so brave to be so honest in the issues involving Autism-spectrum kids. It is so hard for many people to understand all the extra everything that is involved with an autism-spectrum kid. And you have the double whammy of dealing mental retardation on top of that. This is the proper use of the phrase. So, haters, don’t start picking apart Kim’s postings because you think she said something that isn’t politically correct.
Kim, I may not always agree with you, but I will always agree with your right to present your view to the world. And thanks for the blog. I will save in my faves, and keep checking back.
Ramona
Thank you Ramona – appreciate you reading this and providing feedback!!!
This is great!! I love warm & fuzzies as much as the next person, but there are days that I want to scream that Autism effing sucks and it needs to be OK to do that. Looking forward to the next entry!!
Thank you Jami! Yes, I would like to open the dialogue up for parents to speak up about how challenging it is and issues with in the mental health community! Feel free to write me anytime and share any of your experiences on my blog!!! Take care!
Thank you for your strength. Thank you for your wseaneks. Thank you for your love for your family. Your blog has helped me to understand and connect with one of my cousins that I never really could before. It’s not that I was hateful or unaccepting of her, I just knew that everything I tried didn’t connect. You and your family are amazing, and I admire you all.
“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?”
Mrs. Goff, I really, truly hope that you’re not going to turn this blog into yet another anti-vaccine “rant” blog like AgeofAutism.com, “Adventures In Autism”, and many others. If there is one thing that is very much settled, it is that vaccines do not cause autism. The Wakefield “study” was not a study, it was a case series, it was flawed, it was fraudulent, and it didn’t make any scientific sense. Time after time, case control studies looking at neurotypical children versus autistic children have failed to find any difference in the odds of being vaccinated between those two groups.
As for the increase in prevalence (and not incidence), it has been explained as consisting of increased awareness, diagnoses, diagnostic tools, and systematic reviews of the data. An increase in prevalence does not indicate an increase in incidence. For example, the number of new cases of HIV/AIDS is declining, but the number of existing people with HIV/AIDS is increasing. The former was incidence, and the latter was prevalence.
Having written all this, I very much look forward to what you have to say about autism and services for autistics. Without a doubt, children with intellectual and neurological disabilities are underserved and need all of us in the community to come together and work hard to make their lives meaningful and productive. Thank you for publicly taking this on.
Reuben, I never made any statements about vaccines and I really do not want to pursue that argument. The argument for vaccines causing autism is not “settled” there are many lawsuits and cases
still continuing over this topic. I really want to talk about some of the “positive” efforts by people/organizations, etc. that do try and help the autism community. I would really like to focus on bringing attention to the challenges that parents of autistic children and adults with autism face in the mental health community. There are many issues of services being denied to those in need and mistreatment of the autism community I would like to discuss. Many people are afraid to speak out against organizations and/or state services in fear of losing services and support. It angers me that people have to go through this and I would like to bring attention to these issues.
“I never made any statements about vaccines and I really do not want to pursue that argument.”
Then I must be losing my mind because you wrote:
“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?”
You even wrote that you plan to rant about it. We plan to fact-check your statements about vaccines.
It’s easy to… Well, to do this:
“The argument for vaccines causing autism is not “settled” there are many lawsuits and cases
still continuing over this topic.”
Lucky for us, science is not settled in the courts. It’s settled with evidence. Otherwise, the sun would still revolve around a 6,000 year-old Earth, and I’d be burned at the stake for it.
Okay – I see where the miscommunication was on my part. What I meant when I said I didn’t make any statements about vaccines – was that I didn’t acknowledge my side of the argument for or against.
However, I really didn’t plan on spending a lot of time arguing on that point. It is not a topic I really want to to talk about – however, I do know that other parents are interested in seeing that topic displayed – so I do want to provide parents who read this blog an opportunity to rant here about their view on vaccine topic. That was my fault, I didn’t clarify what I meant in the blog when it came to the vaccine issue – that was my mistake – my miscommunication. Thanks for pointing that out to me – I will make that correction in my first post. I need people to “keep me in check”! Thanks Reuben!
Welcome to autism blogging, KGoff. I wonder if you are reading any of the blogs or other sites by adult autistics? I particularly like Karla’s ASD Pages (the wiki http://asdculture.wikispaces.com/ and the Facebook page, (if you use Facebook). http://www.facebook.com/pages/Karlas-ASD-Page/155369821204141
You and your readers may also like Ibby Grace’s Tiny Grace Notes http://www.tinygracenotes.com/, written by a woman who is an autism researcher, a parent, and is autistic herself.
And of course, there’s The Loud Hands Project, now available at Amazon http://www.amazon.com/Loud-Hands-Autistic-People-Speaking/dp/1938800028
The Thinking Person’s Guide to Autism has been publishing thoughtful, insightful essays by parents, adult autistics, and service providers since June 2010. Yes, there’s the book, but there is also the full archive http://www.thinkingautismguide.com/
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