tag:blogger.com,1999:blog-4198181921354117372.post1496531787433266279..comments2024-01-11T02:43:41.872-08:00Comments on autism wars: In Memory of Courtney LiltzUnknownnoreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4198181921354117372.post-83217607783970677542016-05-23T07:53:34.659-07:002016-05-23T07:53:34.659-07:00<3<3Selene dePackhhttps://www.blogger.com/profile/04364096479515097682noreply@blogger.comtag:blogger.com,1999:blog-4198181921354117372.post-63839386000270657702016-05-20T13:59:13.924-07:002016-05-20T13:59:13.924-07:00Thumbs up.Thumbs up.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-4198181921354117372.post-22361081193033431002016-05-20T13:27:30.059-07:002016-05-20T13:27:30.059-07:00Thank you for your response. I write about severel...Thank you for your response. I write about severely disabled loved ones because my son requires 24/7 care. You're assuming that I have time you don't to do these things. I don't. When I am typing this my husband is caring for our son. When I am offline I am caring for him. Planning for your children's future is possible even when you believe there is nothing to plan with. That is not exactly accurate. What is happening is that we are not being informed on what can be done to create our own solutions to housing and community supports for our children. Because the cheapest solution is to kill them under the guise of mercy killing. But it is actually cheaper to provide community supports than to warehouse our loved ones in institutions. And once decision makers see the math, they get on board. I don't know what state you are in and what your circumstances are, but I am in active contact with my state and local law makers and I do that with emails and phone calls from a hands free phone while getting my son through his scheduled educational and care day. Don't give up. Don't assume what is presented to you is it because you are low income. And don't assume I have more means and time at my disposal than you do. I create tiny blocks of time and maximize them. Because I'm fighting for my son's future. I will try and continue writing on this topic and how options can be created for community-based solutions for adults with intense support needs. I hope it will help your family and you. By the way, I have cared for my son without respite and state supports since his diagnoses required I leave my job. While my age and other factors may require I finds ways to gain respite, I do understand your position. Grasp that part of the reason I did not have respite available is that we simply could not afford it. Respite, for us, was a luxury. Peace.<br />Kerimahttps://www.blogger.com/profile/08008406418960337170noreply@blogger.comtag:blogger.com,1999:blog-4198181921354117372.post-81908113153556658772016-05-19T17:11:14.047-07:002016-05-19T17:11:14.047-07:00You have written an excellent piece. I agree that ...You have written an excellent piece. I agree that the conversation needs to change. I am the parent of two severely disabled young adult women. I have, however, openly said and written about the wish that our children die before us. I would never kill, but you must know that the words represent the failure of society as a whole to help us find the wonderful care of which you speak. "That begins will all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives." For some of us living on low incomes in locations where out of home living arrangements for the severely disabled are almost non-existent, our deaths ARE the end of the world for our children. The alternative to the loving care that we have provided them for years or decades even, is warehousing, poor physical care, limited stimulation, the likelihood of abuse. Those of us who have children whose care requires our attention 24/7 do not have the basic luxury of fighting for much on the long term. It's daunting to cut through the red tape to get basic services NOW. It's endless, disheartening and it wears. We must yearly prove to the bureaucrats that our children are still exactly the same as they were the previous year. Budget cuts reign. We claw and fight within our own community for sparse resources to get through the day to day. Planning for the future? How? With what? With whom? It's wrong to kill our kids. Absolutely. It's wrong to let murderers off. But I still hope my gals die before I do. That way I will know that they have lived life loved, and lovingly cared for, right to the very end. Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.com