Free Your MInd

Our children are growing up and growing old. As fun as it was to watch them as infants and sweet young children, we have to accept the fact that our children are maturing and will age. My son is on the brink of becoming a teen. What I have spent the past three years doing is asking myself what kind of quality of life and standard of living I want my son to have when he is grown up.

Part of the reason for my unusual point of view in this blog is an attitude driven by the idea that I want my son and everyone who is disabled to live as autonomously as possible. I want my son and all his peers to experience the best quality of life they can. I want my son and his peers to have the opportunities to succeed and excel in life without losing health benefits, food stamps, and other supports that sustain them. I want my son to be completely included in our community and respected in society as he is. I want my family to understand that my son's future should not be tied to anyone else's. The world should be such that he can live his life without feeling he needs me to be alive to live it with joy. No one, not even his mother, should make him feel dependent. He should feel empowered.

This attitude is why, when being asked something by Landon Bryce one day a long while ago,  I was unable to answer. It had to do with whether I considered myself an autism parent blogger. I really dislike the term "Autism Mommy Blogger". I didn't want to be called that. Because it is used in a derogatory way, to diminish the women blogging. The majority of these women are highly educated authors, journalists and career women who made life changing decisions to be there for their autistic children. Others are dedicated stay at home parents who are self taught advocates for their own kids. None deserve to be marginalized because thousands of other parents read what they write and hold it in higher regard than someone with a background in journalism or science who is not autistic, or has not parented an autistic child. But facing this question from Landon, I could not put this all into words. I could only say, that I did not want that label. I did not want my son to be diminished by my blogging about him. And not all mom bloggers understand that attitude or care. Some are destructive of their children in their blogging and I did not want to be part of that either.

So understand that blogging was something I started to help gain a voice for what I thought my son and his nonspeaking autistic peers deserved for their future as adults. I don't believe a goal of living above the poverty line is an unreasonable goal. I don't think living autonomously is an extreme goal for a nonspeaking autistic person either. In fact I know nonspeaking autistic adults who do live autonomously in their own homes. So the question was how could I write to explain this to other parents? How could I make them understand that the rhetoric they have been given all their lives, that they must somehow survive beyond all hope and be healthy because their lifework is now to be a caregiver for their nonspeaking autistic child for as long as that child is alive is a recipe for disaster? How do I make other mothers see that there is a better future for their children that does not necessarily include them? Because once the problem is defined properly, it can be solved. Autism parents are determined, tough, patient, and focused people. Imagine if all these characteristics were bent towards finding a solution to the problem of where their children could live out their lives autonomously and how to keep them living a good quality of life. I felt that if I could accomplish that change in thought process and attitude, all our children would be safer, happier, and included in their own lives. Parents would be relieved, less stressful about the future, happier now.

So far, I've failed to reach most adults. Perhaps that is because I am not writing about the tough day to day aspects of being an autism parent. Maybe because I am saying I love my son as he as and am proud of him. Or that I reject Autism Speaks, who does not seem to get the faintest idea of how to advocate for my son and his peers because it refuses to include autistic adults in the leadership of their organization, which professes to advocate and speak for them. I do not know, but I do know that I am not reaching the people who I wanted to try and tell that life does not have to be as others have said it will be for our children. I now wonder if I should simply cease trying.

I don't really know where to go from here.  Maybe I should spend some time telling you all what is already out there that can change your children's lives right now. Right now, as state and federal governments are cutting funding from developmental disabilities programs (click me), autistic adults are teaming up to live autonomously and support one another living as independently as possible. Parents of nonspeaking autistic children are having that conversation about coaching their children in day to day life skills now. All that is great. But there is something we can all do right now. We can fight to insure that by the time our children grow up, they are paid what any other worker is paid for equal work. We can fight to insure that all our nonspeaking autistic children are assessed and accommodated with AAC devices and that the law insures that their speech devices are never removed from their reach. We can form communities for autonomous living as parents and built our own cohorts of classmates, playmates or friends that can live together and share a home or large apartment and adapt the homes for them so they can live as autonomously as possible.

We have right now, so much technology that can make a nonspeaking autistic adult autonomous. We are just so focused on the tragedy model scenarios of us carrying our children on our backs for their entire lives that we are not demanding our schools prepare them for life on their own. Our children are ABA "therapy-ed" into learned helplessness. We are fed a litany of what our children cannot do to such an extent that we become helplessly trapped in a mentality that says our children will need us until they die.That mindset is a type of learned helplessness as well.

We now have driverless cars that use GPS and onboard computers to navigate traffic. We have robots that clean carpets, toilets that flush themselves, all in one machines that can wash, dry and even steam clean laundry. We have dials on showers that keep users from dispensing water hot enough to burn.  No autism parent is thinking about how these things can make their children's lives more autonomous. What is out there is literally thousands of autism blogs saying the same sad and tragic things. I don't want my blog to be one of the thousands abandoning hope and wallowing in despair.

How can we change things right now? How can we make a future for our children that no one believes is possible? First change our attitudes of what the future means for our children. Yes, our nonspeaking autistic children can live well without us. Yes they can. If we help them. Believe your child can leave home just like any other child. See yourself being proud of your grown child living autonomously. Then join me. I"m telling you what is out there for them will blow your minds.

Mother's Day

Today finds me going back to why I felt the need to write a blog in the first place, and where I want to take the blog from here. It is sometimes a good thing to hit the brakes on what I'm doing, look to see where I am going and decide if I really am in such a hurry to get there.

My original purpose in writing this blog was to have a body of work for my son and my immediate family. This body of work was to be a clear statement of how I felt about my son being autistic. It was to make it apparent how much I loved him.  It was meant as a vehicle for everyone to know my wish that he be as autonomous as he is capable of being.  This body of work should make it clear to any reader:

• Our son is loved unconditionally. He is not loved despite his autism diagnosis.
• I have faith in our son and presume he is competent even when others do not.
• Whatever advocacy work I do is done to gain acceptance, inclusion, and accommodation for our son and those like him.
• That my purpose is to stand by my son and not have anything I do, including advocacy, overshadow that critical purpose.

This blog was to be proof of how proud I am to be his mother, and what an amazing person I believe he is. Mustafa has great creativity, determination, and strength of purpose. These qualities are laudable in any human being, but in him they are opening the way for him to succeed in a world where he is seen as less than the least of God's children, because he is a minority even among his peers. So as he fights for mastery over his environment, it is my task as his mother to fight for a rightful place in society for him.

I decided to set the direction of The Autism Wars blogs back on that course. To that end, I am choosing topics I think are important to him, and people I think are role models for him and examples of what we all can be as advocates ourselves.

 Today I decided to talk about people who fit that criteria; those who quietly wage war against great odds for neurodiverse adults and children, and continue to speak out and fight for all people on the autism spectrum while seeking justice for their own children and loved ones. Since it is Mother's Day, let's start this new journey with two amazing Autism Moms who don't blog.

Andre McCollins and Mom Cheryl in happier times

Cheryl McCollins fought for 10 years to have the video of her son Andre’s torture at the Judge Rotenberg Center released to the press. She continues to fight to close the ‘school’. Cheryl sued the JRC for the funding Andre will need for his care the rest of his life. Andre has never recovered. Cheryl joined protesters outside the JRC and continues to use her voice to speak out against JRC and the torture of young Autistic people in the name of discipline. Cheryl even created a petition on Change.org asking for support in demanding the State of New York cease sending students to this center.

Emily Holcomb and Mom Jenny Parker Holcomb,
photo courtesy of the Holcomb Family

Jenny Parker Holcomb was completing an IEP meeting for her daughter Emily when the sheriff's department appeared with a police complaint against her daughter, accusing Emily of slapping a teacher. Jenny had to explain that Emily was on the profound ray of the autism spectrum, nonspeaking, with intellectual disability. Emily had been so mistreated at her school placement that at one point she was restrained for 55 minutes by staff. With the help of special education attorney, activist, and father of a child with autism James Gallini, Jenny began the fight for Emily's future. Lydia Brown, who read about Emily's situation on Landon Bryce's ThAutcast blog, offered to write a petition on Change.org and that petition began a social media crisis that no one was prepared for. Assault charges against Emily were dropped. Emily has since thrived in an appropriate educational placement and community activities that give her the life skills training she needs to transition to adulthood and autonomy. Jenny realized from Emily's own horrific experience that this should never happen to anyone else. She has since led parent support groups and online action groups, empowering other parents to stand with their children and take on whoever abuses them.

Happy Mother's Day

This is the first segment in a series on people who need to be recognized for the work they continue to do for the betterment of the autism community.

Note: James Gallini, Landon Bryce, Emily Titon, Shain Neumeir are names you should know. They play very important roles in these stories, as you'll see later.