Would you say we are organized well to fight and represent our children’s/ self’s needs in local/ state/ federal politics? I personally believe politics/ groups have failed us, so what can WE do to make things better? Also (and maybe most importantly), do you think you challenge yourself to understand other areas of the spectrum disorder that you or your child DON’T suffer from? Being open to understanding the “other” is the foundation of any good community.
On a "grassroots" level, yes. We parents give each other support as a whole. However, when it comes to politics and lack of funding, we cease to be heard due to what is beyond our control.
My autism team is a great place! There are organizations all over but we can do a better job at communicating and making people aware. Parents/Guardians/Friends/Family need to take an active part! I commend you for opening the dialog today. I can say I know there are gaps and would like to help make the network stronger! I believe in see a need fill a need!
If you see a need fill that need! If you have a Sick neighbor not able to mow his yard... mow it or get someone who can do it to do it. Elderly man on foot crossing the street that you know can’t make it in the time the light is set for... don’t move your car. Give people more grace, be more patient or tolerant to having to wait. The other day I was working in the garage and my daughter hit me with her bike trying to squeeze by me because she wanted to go ride it. She didn’t think about giving pause, that her step mom was bent over in the two foot cleaning up a mess, she just wanted what she wanted. She got a lesson in humanity. I was not happy but I calmly explained. That there are days that things will be in your path... to take pause and pay attention to the thing that may have slowed you and try to understand why it’s kind to wait and delay your own gratification. That it would, have been nice to have her ask me for help instead or for her to stop and see what i was doing and help me clean up.
We can’t expect the government to change America or the world! We have got to do it. We have got to give a voice to those that are not being heard! This isn’t about creating hate this about reminding people that the government only does what the voice they hear tells them to do! All the people out there that choose to not vote, not to speak up and wonder why the government is not helping. If people just voice negativity and point out the problems with out bringing a solution to the table Who should be to blame? The goverment that only hears $ or the loudest voice.
We have to stand for the things we believe in!
“We can’t go silently into the night”
I have thought about the same things and landed on these viewpoints.
I feel that political fights need dedicated forces that honestly most parents dont have the actual time for, especially for those caring full time for their child. We look at so many (in my opion) insignificant and much less important issues to take action on in this country. My priority platform as always been Safety. Sadly, the majority of those abused have minimal to no communication abilities so their cries are never heard on abuse in homes, schools, facilities and group homes. They are invisible...forgotten. There is a video leaked online or a one day newsbreaking story, then its over. I feel parents across the board (school districts, doctors, politics etc) are not taken seriously because we are " uneducated" or "in denial" or "just want to blame someone".
I feel there are only 2 options. High functioning autistic adults take a powerful stance and help be a voice to those less functioning because they have a distanced connection from parents to be taken seriously politically. And second, employees at schools, facilties, hospitals and group homes actually come forward and do whats "right" over job security.
As for "our community", I feel there is alot of understanding and educating still to be accomplished.
I never changed laws or won any cases, but I fought like a Warrior and made many big accomplishments, changes and awareness. The "community" remains reliant too often on "professionals" out of desperation and falls too lax in regards of Advocating. BE LOUD and stand up for your child and others. I never stifled myself. But you cant take on a fight without research and education on the issues and knowing your child better then ANYONE else.
I think the issue of not knowing where to go or who to talk to, that is ready to listen is a big issue for a lot of parents.
The autism community is extremely divided from views on acceptance of the diagnosis to types of therapies to dealing with day to day issues. Like I said before, the same water that hardens the egg, softens potatoes. While it is a spectrum, all ASD kids deserve unconditional love, care and support. No need to assume lack of intelligence because the child is low functioning. All kids deserve kindness, gentleness and patience. I would like to see kids being treated as human beings they are, not just projects. This won't happen with politics, this needs to happen at the micro level the home, and then the real change will happen. Sure after some of the kids turn into adults, we need services if they are not able to live independently, and the level of care for that needs to be raised, just like it needs to be raised at a nursing home.