I never gave up on my son and I continue to break through those walls of excuses to find support and opportunities for him. Some people think I'm pushy and even emotional at times. But where would he be if I didn't do all that I have? I know he would not have graduated from high school, let alone succeeding in college.
Every time someone rolls their eyes, talks about my son behind my back or makes excuses; it makes me push more and fight harder. Not what some 'service providers' would have hoped for when they tried to brush me off. My response to their criticism is that it's their JOB to provide these services and support for those who need a little help and encouragement.
These jobs, that are paid for with our tax dollars, are not just a 'free resource'. These are state and federally funded resources set up with the purpose of helping people become productive citizens in our society. As opposed to a burden on our society.
I'm not asking for favors or special treatment. I'm asking them to do their jobs. Jobs that again, our tax dollars pay for. I'm also asking that they provide the services and support that the State and Federal websites clearly state are available to all who qualify. Really?! I've sent the link attachments along with specific questions and request to vocational rehabilitation workers, as one example, many times over the past 4 years. With little or NO response; let alone acceptance of any responsibility to help provide the services they are suppose to. Such as employment assistance, training and support. Where is the accountability in these jobs and organizations?!
My son wants to work and learn to be independent. He doesn't want a hand out or disability money. He just wants the assistance that is suppose to be provided to encourage employers to give these young people a chance and opportunity to succeed. Such as a job coach and training that doesn't cost the employer time or money. Just the support both the client and employer are entitled to. At least according to the state and government websites and documentation I've found. Nowhere does it say that voc rehab, as just one example, will help you if they want to or if they feel the client is worth it in their personal opinion.
Besides being accountable in these service provider organizations; Why can't people just do what is Right? Not just do what they feel like or what they assume to be worth the effort. I don't believe that's part of their job. There are 'guidelines' that seem to be just 'words' on paper or a website. Nothing more in my 20 years of experience dealing with the 'system'. It is very frustrating, but has made me more determined!
Recently I was told, once again, that I should just give up. That I can't expect to count on anyone else to help my son or I. Believe me, it would be easier. But does that mean I should give up? No, not in my opinion.
For one I'm not ever giving up on getting my son anything and everything he deserves. I also feel that 'giving in' to the system by giving up the fight, is one of the reasons people in these positions and organizations are not held accountable. The frustration and bureaucracy gets to be too much for most people, so they give up. I have seen it so many times. I have met several mothers just like me who can't get the services and support their children need to get good employment. A necessity to their being independent. My heart goes out to them!
We are not selfish people by any means. We only want what is Best for our children. Just like any other parent should want for their children. Children who did not ask to be born. Let alone be born with a disability or disadvantage of any kind. They did nothing to deserve any of it and it is our job as parents to protect and provide for our Innocent children. They are Innocent victims of the 'system' and our society. Special needs parents are not pushy or unreasonable. We are being accountable and doing what is 'right' in the 'job' we choose to take on.
I am determined to help not only my son, but all the children and young adults like him. To give them all the opportunities and support they not only need but deserve. It has become extremely apparent that it has to start with demanding accountability within the 'system'!
So where do I start; who do I contact now? Where do we as parents go from here? Advice and opinions are openly accepted and greatly appreciated!
http://velvetoversteel.blogspot.com/2010/05/accountability-and-doing-what-is-right.html
http://velvetoversteel.blogspot.com/2010/05/accountability-and-doing-what-is-right.html
Thank-you for writing from your heart, Coreen, and what a compassionate, loving mother you are! Keep up the fight for wanting what is best for your son. He deserves that! Keep up the writing! :)
ReplyDeleteYou are wonderful! And it certianly isn't selfish! It is definitely in the BEST interest of EVERYONE in our country to help as many people to be independent and off the system as possible. I have a lot of concerns about helping my son to be able to work independently some day. The thing is, a lot of people with Asperger's have gifts and skills that would be valuable in the work place.
ReplyDeleteI want you to succeed! Giving up is not an option. This is life!!!! A valuable life!
Don't give up - keep fighting!
ReplyDeleteYou are indeed a mum in a million, you have faced all the bounderies with your son, both of you with heads held high, your son wants the independance he so richly deserves and I believe he will get it.Good luck to you both,
ReplyDeleteYou both are special people.
Yvonne.
Good for you dear one and keep on fighting. I wish I had a "person" or "place" that I could direct you to to get you where you and your son need to be. I can appreciate your frustration. I just can't imagine how these people won't or don't do their job. My heart goes out to you sweetie.
ReplyDeleteHugs
SueAnn
I disagree I think u have a natural talent for writing, sharing information and getting it across, well done and keep going xxx
ReplyDeletegood job advocating for your son...so may do not understand when it comes to AS or autism...they have a mental picture maybe, but...i have yet to find a greater advocate than the parent. and then win them as you fight for him. i have found if i help others understand, they respond better to me, and dont see me as demanding...
ReplyDeleteYour son is so very lucky to have you! I know of at least one parent who gave up her disabled child to his grandmother because she didn't want to raise him. She didn't want anything to do with him but she took care of her children who were "normal." Makes me sick!
ReplyDeleteI empathize with your struggle. I can't find a job no matter how many places I apply to. I imagine it would be a lot worse if I were disabled.
Good luck to you!
Wish I had some advice or some help for you. I admire your struggle and tenacity. Unfortunately, it seems that is what is it going to take to get the help you and your son need.
ReplyDeletelike always i reiterate - you are a HERO to so many mothers out there...DO NOT give up ...i can't be of any help to you in terms of whom should you turn to since i am not clear about the systems of your country ...but i know by blogging about the problems you have already created quite an awareness... do you think you can write a mail to somebody who you think can make a difference? or probably at least show you some direction?? is it possible for you to approach some type of society / group dedicated to Asperger Syndrome and the problems in their employabilty? i really don't know how to help you ..but i wish you all the luck in your effort to fight it out...take care
ReplyDeletehello,
ReplyDeletehow are you?
what neat mom you are...
when it comes to family members, we build relations upon understanding, love, and tolerance...it is different from boss and workers relations...
you have your gift,
be natural,
trust your faith or belief,
keep it up!
I'm so sorry to hear of all the problems that the government has given you and your family. It's really not fair that the people who honestly need help in some way can't get any because the people who don't need help, take advantage of the system.
ReplyDeleteYou're a lovely woman and a wonderful mom. Don't ever forget that.
And thank you for commenting before!!!
Thank you 'all' for your sweet comment, support, suggestions and letting me 'vent'! :-) I appreciate and love you all so much!!!
ReplyDeleteHUGS..~ Coreen
Never ever give up. Lovely post.
ReplyDeleteCJ xx
Coreen I can't believe that anyone would actually say "give up" are they not a Parent? and if they are shame on them. I always say we are our child's biggest advocates....I bet that makes you even more the driven to fight. I wish I had some answers for you....where do you go from here. I have minor struggles with my son Jack and his reading...in comparison to what you have gone through. And all I can say is I will never give up, I do it all for his future...I told him the other day, I will not let you fall through the cracks. You see he does because he is a good boy, and does what he is suppose to in school, meanwhile his reading has gone down major this year...why I ask? well I am conferencing with the teacher on Tuesday and hopefully will get some answers and solutions. Looks like tutoring this summer!~
ReplyDeleteSo glad you found me, love your attitude also. Great Mom you are!
ReplyDeletekim
You are so right that it is our job as parents to want the best for our children and kudos to you for standing up to those people who ought to be doing their jobs to help those whom they are paid (by our tax dollars) to help.
ReplyDeleteMay not be anything new to you here, but it doesn't hurt to try. Here are some resources to try God bless, Dr. Bobbi
ReplyDeletehttp://www.autism-society.org/site/PageServer
http://www.healing-arts.org/children/autism-links.htm
http://www.mastersinhealthcare.com/blog/2009/100-useful-sites-networks-and-resources-for-parents-of-autistic-children/
Wonderful post.
ReplyDeletePeace, Love and Chocolate
Tiffany
More power to you, Coreen. These agencies and bureaucracies were set up to help the disabled and their feet need to be held to the fire. Whatever is done for the disabled in my state and country is something I am happy and glad to have funded by my tax dollars.
ReplyDeleteOur five-year-old granddaughter was born with a cleft palate and many developmental delays. She still cannot talk. Like you, my daughter is a pit bull when it comes to haggling with bureaucrats who seem to want to shunt her to the side and get her off their backs without really dealing with the issues and coming across with the help that has been allotted and is so desperately needed.
For the most part her experiences (so far) have been positive as far as the many wonderful people out there who make it their life's work to help disabled children. But many times she has been beaten down by the red tape. I admire her a great deal for her tenacity and I admire you too!
Coreen;
ReplyDeleteYou DON'T give up. You kick it up a notch. You gather those other mom's you know and you start your own "job" for those kiddos based on their needs. Then you print flyers and you and those children go out and spread the word. You start a movement that makes others aware. You start a resume that shows "I CAN". You keep going. You inspire hope...give back self-worth and change the world of one...and then two...and then...three...and then those who can only see the world of "ME".
This might be of some help- http://usgovinfo.about.com/gi/dynamic/offsite.htm?site=http://www.ssa.gov/work
ReplyDeleteThe ADA might have some advice for you- http://www.ada.gov/
You are a true advocate for you son and all those alike. Never let anyone make you feel sorry or lesser for doing it either.
I too get so fed up with people that do not have the common sense to imagine themselves with a disability ignorantly proclaiming that anyone outside of the "normal" should just be happy with leftovers. I get so sick of gov agencies designed to help the indigent and disabled sitting in their cushy little chairs passing judgment, but doing nothing to productively help.
Sorry, I am ranting. I feel your pain, frustration, and anger.
I had a politician tell me that entitlement programs should be abolished. Sick, lame, and indigent people should depend on the grace of charity and church to provide for them. Yeah, I wonder if it were him in a w/c unable to even wipe his own rear end, if he would want to depend on "good" human nature to make sure he gets what he needs~?
We have had the same issues trying to get my brother some type of placement since he graduated from college. Nobody seems to want to help. For example, My brother went and worked delivering mail at one of the local hospitals and loved it, but the worker claimed they didn't have a current opening and would continue to monitor the situation. I was really wondering why they sent my brother there if there wasn't a job opening in the first place. Bottom line, we never heard another word about that job or any others like them.
ReplyDeleteMy brother moved to Atlantic 3 years ago, so he started working with someone up there. He has had 1-2 interviews in those three years. We attempted to get him into Cass, Inc. After six months of Pott and Cass counties not being able to decide who was going to pay for it (he lives in Cass and my mother, who is his legal guardian, lives in Pott) he was denied placement because his IQ is too high. So, he can't get a job to which he is suited because Cass, Inc. people are given preference, but he can't get into Cass, Inc because his IQ is too high. FINALLY they found some type of funding so he can go there 3 times a week for 6-9 weeks. If they don't find him a job in that period of time, I don't know what we are going to do next.
Long story short, you have to be persistent and stay on the people that work for these agencies all of the time and make sure they are doing their job. And then start over when they quit and someone new comes in.
Thank you for being an advocate for your son and others with Asperger's and Autism. We have to remain vigilant and make sure we are being heard. People like your son and my brother do not fit into the traditional molds that many of these agencies have been dealing with in the past. Unfortunately, the number of people with Autism needing their services is going to continue to increase. They need us to really be "in their face" so that they can effectively deal with the people that will be needing their services in the near future.
That is exactly what I've been told for the last 4 years; that my son's IQ is too HIGH! Nothing against the people with full autism, MR or downs, but come on. These young people needs job even more, because for 1, they can live on their own or in a group home at least somewhat independant. & 2 they know when they are being treated badly, etc. What does Voc rehab, Cass Inc. etc. think, that they don't have any self-esteem or feelings. Having a job helps them not only with their job skills, but also their sociall skills. Being isolated sure doesn't help them grow in any of the ways that they need and deserve.
ReplyDeleteThank you so much, Angie! For your comment and esp. for being such a Great sister to your brother! I will be including him in my prayers with my son.
Big Hug to you all!
Coreen