Monday, February 24, 2014

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.


  1. Thank you for this very important thought process. It's so hard for any parent to let go. Any added worry makes it harder. But we do our children a disservice by not making every effort for them to live their lives independently.
    - Reblogging on

  2. I don't know the exact numbers but, there are parents (including myself) who have adult sons and daughters "on the spectrum," still living at home. Speaking for myself, I never imagined I'd still be parenting my 27 year old son as I approach my 60th birthday.

    Mind you, once he graduated from high school in 2005, my parenting skills moved over to job and life coach. Shepherding him through the journey to find meaningful employment has been almost a 10 year saga - he's always worked but most of his jobs have been part time and not soul-satisfying. We're getting closer but, we're not there yet.

    You're right about what's out there. For housing, there are exciting things going on in Delaware and Arizona. Have you heard about www.MadisonHouseAutismFoundation dot org? Located in Maryland, the foundation focuses on autistic adults.

    And, in Arizona, there's SARRC - the Southwest Autism Resource & Research Center? There's a comprehensive PDF download on their Resources page that examines "residential options for adults living with autism and other related disorders."

    That families are coming together for outside-the-box solutions is, I suspect, fueled by what we don't see when we look around us.

    It's hard work but, with the examples of what's going on in other states, there are lots of existing models to inspire us.

    Thanks for getting this conversation started,

  3. We have tried many, many AAC devices, but having access to excellent technology is not enough for every individual to learn the value of communication, through speech or otherwise. At his most recent IEP meeting, we virtually scrapped traditional academic goals in favor of working toward self-advocacy and independent living skills, because I DO want him to be as independent as possible. My 13-year-old goes out in subzero temps and does. not. know. that it's unsafe. I appreciate the impulse to send our children into the world as capably and independently as possible, but frankly, whether he's dependent on me or someone else, I do not see that my son is not going to be heavily dependent on someone. I WISH it were as simple as handing my son an iPad with Proloquo or another device, but please do not oversimplify the challenges, either.

    1. Thank you for you honest comment. It tells me that I failed to make my point clearly. The point was not that the only answer to what the next chapter of our children's lives will be is only technology. And assistive technology for autism is not limited to speech devices alone. Supports meaning anything that increases autonomy, which is different from independence. My son will be autonomous not independent. There is a difference there that is greater than semantics. Isn't it odd that as we age, we accept that our aging population might need help to live in their own homes as long as possible and that is autonomy. But for our children it is always about what they failed to do. I also had poor results with my son and AAC devices until I went to an assistive technology clinic and had my son independently assessed by someone who had proper certifications in MAT, CCC-SLP. It takes a trememdous amount of work, particularly as your child gets older and relies upon the communication pathways he knows, to get him to use assistive technology to communicate. It may not be something your IEP team wants to follow through on and requires intensive support from a speech language pathologist trained in MAT who understands your child's pathology. Did the IEP team do a proper assistive technology assessment on your son? Lastly, you don't know me and I don't know you so I do not expect you to know what my son's challenges are. They exceed those of your son. However by the time he is an adult he will be autonomous. Autonomy does not mean he will not need the support of team. It means he will be part of his community. The aftermath of the Olmstead decision is just that. It means that whatever supports your son will need to live autonomously must be provided. And it is less costly to the government to provide those in a community setting than in an institutional setting. And yes, technology above and beyond iPads, will reduce the amount of hands on day to day life skills support your son will need. It begins with getting past your frustration and fatigue and understanding that your son can do it, no matter how many times it hasn't worked in the past. IEP teams want what is expedient, least time consuming, generic, and cost effective for your son. They want adequate education. Not the best education. I do not know what therapies your son receives outside of his educational setting or at home so I cannot of course know anything. Except don't give up on your son. He can do it.

  4. This is something I am passionate about, I can't stand to have people tell me what my kids will never do, how would they know? So I blog about respecting their right to an education, to opportunities, to choices, to autonomy, rather than closing off options to them.

  5. I agree with you.
    I have two sons on the spectrum. I worried a LOT about all these things for my eldest. I cannot stop reading about autism (I blog a little too) because I want to change how my kids are treated. From all this reading I have started to suspect I am also on the spectrum. I also believe my ex husband is.
    And if he and I both managed out in the big bad world, I am pretty sure I can prepare my boys for it!

  6. I am an autistic woman with autistic children [and NT] granchildren, and soon a great grandbaby. Whatever his/her neurology, he/she like the others, will be greatly loved.

    My youngest son is 20 years old. He is autistic. His many co-morbidities include profound tourettes, and for the past 8 years, the agonizing pain of having his brain sending signals to the nerves in his body that they are under acute attack.

    His life,mostly because of the neurological pain has been extraordinarily difficult [ he has passed out from the pain sometimes hundreds, possibly thousands of times in a day. He used to beg me to kill him if I loved him.

    Though there is no cure, his pain is now comparitively doing much better. He has lost so much in the past 8 and a half years. Though he is doing much better, he still sometimes gets angry with me that we didn't kil him'

    I am an older mom, almost 60. I kept waiting for a miracle or to find the cure for his suffering.We spent over $500,000 looking for a cure and are now so broke we live in a camper in the mountains. He still has the pain but it is so much better. I do not regret spending a penny of it.

    I was really believing that "something good " would happen that wouldd help my son to have the life he so wants and deserves. Then I got cancer.

    So, my obsession is to find a way for my son and other young people to be able to lead awesome lives. [sorry, will finish later. my meds decided it is time to kick my ass]


  7. [ part 2]
    Last August I made the decision that I needed to help ensure that my son, and others,have a quality future.Though we can no longer afford to live in our home, we were able to keep it by renting it out. We decided that in about a year and a half we will be selling it and buying a large,multi bedroom home in Thornton Colorado. We pan to rent and board with other autistics who need help in certain areas and can help the other residents in other areas. We also already have 2 couples interested in buying homes in the same neighborhood, one an NT couple with an autistic child, and one a succesful autistic activist who wants to be part of change. There are some in our GRASP group who are interested in iving with us. It will be a small start in what we hope to be an autistic community within an already existing community.

    i post regularly on WP. the self esteem is so low, the loneiness is so high. Some have never even met any of their autistic brothers and sisters. They longingly speak of attending Autreat in PA, but so few can afford it. So, we put together AutHaven in the mountains of Colorado just last week.t was only $100 a person for each person [food,lodging, incredible goodie bags, speakers and entertainment] We found enough donors that most attendees had to pay nothing. One of the attendees is a writer and engineer from Albuquerque NM who is in the process of putting together a non-profit retreat to be run entirely by autistics. We were taught some fantastic executive function tricks, took a ini course in autism and self-employment, had fun and made friends.[ oh, and the food was incredible if I say so myself] Most importantly, there are already 4 people in the United States and Canada who are putting together mini retreats. I am hoping that it is not many years before there are affordable mini retreats for everyone around the world.

    I no longer fear for my sons future. I am incredibly excited to find out what other autistics and autistics and their families are going to be doing to ensure an incredible and mutually supportive future for our people.