Saturday, December 26, 2015

I am NOT My Child's Voice!

Many parents claim to be their disabled child's voice.  I am not that kind of parent.  I am not my child's voice.  I have never been my child's voice.  

Please read this:


Read it again.

You.  Are. Not. Your.  Disabled. Child's.  Voice.

You are not.

Are you a ventriloquist?  You are still not your child's voice.  

Are you a magical being who can force people to speak your will?  You are still not your child's voice.

Your child has a voice.   Stop ignoring it.  

Stop co-opting it.   

Stop making your child's disability all about YOU. 


When my child was a tiny baby and cried out when he needed something, he had his own voice. 

When my little one was nonspeaking (until he was about six), he had his own voice.   He pointed.  He signed.  He used picture cards.  He complained. He resisted.  He smiled.  He laughed.  He cuddled.  He pushed me away. He was non-compliant.  He communicated.  He had his own voice. 

When my child loses language, as he sometimes does because that is a not uncommon thing with Autistic people.....he has his own voice.  

He types.  He writes.  He points.  He signs.  He uses picture cards.  He complains.  He resists. He smiles. He laughs.  He cuddles.  He pushes me away.  He is non-compliant.  He communicates.  

This is his voice.  

Even when it is not a speaking voice, this is his voice.  

It is not my voice.   It is his own.  


My child and I have the same disabilities.  

I am still not my disabled child's voice.   I can sometimes understand him in ways that non-disabled parents do not understand their disabled children, but I am still not my child's voice.  

I will never be his voice. 

He has his own.

It is my job as a parent to help him advocate for himself, not to advocate in his place.

It is my job as a parent to make sure his voice is heard and respected.  Even when other people do not understand.  Even when people will try to tell him that I am his voice.  Because I am the grown up and the parent, that does not give me the right to speak over him or for him.  

I will never be his voice.  That is his and his alone.   I refuse to take that away from him.  

Tuesday, December 22, 2015

Why I Dislike The Mighty & Better Alternatives for Parents....

Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect for us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us.

Disabled voices MUST be central if you are interested in advocacy. Disabled voices MUST be the priority in any conversation about our lives. Parents and caregivers are important and if they feel that they need support in their journey, it can never come at the cost of our humanity. If your support is toxic, it helps no one. It certainly doesn't help the disabled child you are parenting and it also hurts you, and your relationship with your child.

There are lots of places that are interested in parent EDUCATION, which is different from support, but in the end, that is what is going to make you feel the most supported. When you learn from the real experts (disabled people), you are going to find the kind of peace that you just can't find from a group of people sitting around complaining about disability and who view their children as burdens.

Disability is a natural part of the human experience. That's from the ADA (Americans with Disabilities Act). I say this a lot, but if a quarter century old piece of legislation is more progressive than you, you've got a lot of learning to do.

One of the reasons disability activists are so critical of parent centered spaces is because we are the ones living with the consequences of our lives being portrayed as burdens and tragedies. We don't want your kids to grow up feeling that way. We want better for your kids because they deserve it.

So, I don't like The Mighty, and I don't like a lot of parent centered spaces that think that we need to see "both sides" when one of those sides is literally arguing for our own lives. Disabled children and adults deserve to be respected and to be able to live our lives with dignity. We do not deserve to have to defer to a parent's "right" to complain about their lot in life. Disabled lives have value and we need to start remembering that and believing that.

As I said before, there are spaces online for parents to learn. Places for parents to get support in parenting by taking a seat and listening to the real experts.... Support that does not come at the cost of their child's humanity. Some spaces that are doing it right: Ollibean

In addition to that, there are TONS of disabled adults blogging and talking about their lives. You just need to look and you'll find them.

Thursday, December 10, 2015

Behavior Plan For Parents of Newly Diagnosed Autistic Children

A Behavior Plan For Parents of Newly Diagnosed Autistic Children.

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly  because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

  • I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about me.  
  • I will never blame autism when I have a hard time parenting my child.  Parenting is stressful at times, but rewarding as well.  This is true for ANY child and I will recognize this.
  • I will prioritize the voices of Autistic people over the “experts” as I recognize that Autistic people are the ultimate experts on their own lives.  
  • I will throw out the myth of a “developmental window” and acknowledge that my child will grow and learn in their own time, in their own way with my love, guidance and nurturing.
  • I will never apologize for my child being openly Autistic.
  • I will look at every therapy offered to my child with a critical eye.  I will ask myself what is the desired outcome?  Is it supportive or is it attempting to change my child’s neurology? I will never force my child into therapies that vow indistinguishability or that seek to “fix” or promise a non-Autistic version of my child.
  • I will embrace the neurodiversity paradigm and celebrate my child as a beautiful part of the wide and diverse spectrum of humanity.
  • I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
  • I will learn about Autistic culture and find Autistic friends, not just for my child but for me as well. I will  promote acceptance and lead by my example.
  • I will learn about identity first language and show my child that I am proud of their Autistic identity.  
  • I will NEVER say that I love my child but not their autism.  I will recognize that autism is an integral part of who they are and shapes how they view, process and experience this world. I will love every part of my child.  I will never teach them shame  or internalized ableism.  
  • I will presume that my child is competent and understands more than may be apparent. I understand that communication is more than speech and I will support my child's communication in any form. * 
  • I will never fight autism, but I sure as hell will fight for their right to be exactly who they are in this world.  
  • I will recognize that I am only human and I will make mistakes along the way.  I will forgive myself and do better.

For a printable version of this Behavior Plan, click here.

Image: Green background with dark text that reads:  Behavior Plan for Parents of Newly Diagnosed Autistic Kids

*Thank you to Ann Littell for this contribution to the Behavior Plan!