I honestly thought that when I wrote this blog that no one would read it. I got so fed up with the discrimination, incompetence of state and local services and the mistreatment my son and I received from the very people that were supposed to be helping us. I was ready to hear, as I always do that “I am the one with the problem, the attitude and that I have issues”. Don’t get me wrong, I have heard these things, just look at some of my blog comments; however, what has surprised me is that I have received more comments with parents sharing their personal stories that are similar to mine and offering support.
My blog might not be the most popular, the most read or the most well-written blog, but it actually did what I wanted it to do; it encouraged some to come forward and share their experiences. As parents or caretakers of individuals with autism, the experiences are not h always “warm and fuzzy” like everyone wants to hear. We struggle, we cry and sometimes some of us wish we were no longer here to have to deal with this experience. Unfortunately, those of us who choose to speak the “real” not “warm and fuzzy” truth are often criticized and unfairly labeled. I know have written this type of statement before, but please remember that you are more than welcome to comment here about your experiences and feelings.
I have been able to meet with people who have commented on my blogs and I love it! I love being able to meet with others and hear their experiences and realize that I am not the only one struggling. Meeting with people who have read my blog also tells me that there are massive problems with our local schools and service providers that need to be addressed. Unfortunately, most parents are fearful of speaking out for the fear of their children losing services or being treated differently.
Mistreatment of individuals with autism (children and adults) and inadequate services will continue unless we, the parents and caregivers unite to speak out. Think back to my blog, “Kids Club – Denying Services to Children In Need”, oh, did this bring about some nasty comments. People were so shocked by this blog; however, my story is true, because before I wrote this blog I actually had a meeting with them and confirmed my timeline and facts with them. I have been told that about 3-4 months after this blog they changed their organizations’ name and now they have a new website with a whole new “fresh, inviting” look. Did that blog actually do anything? I am sure most people, especially the people who work there would say “No, that’s all in her head, she just did that blog for attention and to inflate her ego”. I am not saying that my blog IS responsible for their organizations’ changes, but I do know it DID have some sort of effect on them and made them realize they need to watch how they treat parents and that they need to formally document why they are “kicking” certain children out when they feel like it. Speaking out is more powerful than you realize; videos are even more powerful.
In addition, to make matters worse, the former editor of the Hanover Sun mentioned to me that one of his co-workers stated to him that he needed to stop “influencing me” to write my blog – and this statement was from a woman. Wow, I didn’t realize that I am not writing these blogs because of my experiences or trying to encourage other parents to come forward; no, I am writing these because a “man” influenced me. Really? How ignorant and discriminatory can you be?
This is what I have to go through when speaking the truth of my experiences and this is why I am always so thrilled to hear from parents, lawyers and caregivers expressing similar struggles, frustrations and offering support. Yes, I have had a lawyer contact me from another state who is representing a family that is going through a similar situation I wrote about. No, I don’t blog everyday like is recommended to drive traffic and increase readership, I do that for a living for my software company. This blog is very personal to me and I want to keep authentic and sincere.
I want to keep encourage you to comment here and to share your experiences with others, as well as to speak out when you know something is wrong. If you want to speak out, but can’t find the courage or resources, please contact me and I will work to provide you the help and resources that may help you. No, I am not the “Autism Whisperer” by no means, I actually know people who do fit that title, but I am all about speaking the truth and trying to help those in need. This blog is not about me or Christian, it is about our experiences going through this “roller coaster” of good times and bad times, we too ride that “roller coaster” with you.
As long as this blog is up, please continue to comment or write to me personally, as a lot of you have done. I honestly appreciate hearing from you, your experiences, your struggles and statements of support. Some of you experience more “bad times” than “good”; always remember to celebrate and be grateful for the “good times”. This is something I have had to work on over the past couple of years. Fortunately, I am happy to report that Christian has been doing very well since the change of medications; we did suffer from violent melt-downs at least once a week, but have now dissipated over the past couple of weeks.
Take care and keep fighting the good fight, no matter who or what tries to silence you.