Planning Halloween costumes is harder than it looks!

Planning Halloween costumes is harder than it looks!

Blog, Commentary
Are there any parents out there who are scrambling to figure out their kid's Halloween costume? ­čśČ Am I alone in this? Probably... It's okay. I'm pretty sure most of the time that I am the only parent messing it up on the daily. But if you are still figuring it out a day before Halloween then know that you are not alone. I'm with you. This year my son is dressing up as The Flash. [embed]https://media.giphy.com/media/4hRy0u1cgIYMg/giphy.mp4[/embed]   We are attaching cardboard lightning bolts to the wheels of his chair and we found a too small, off-the-rack costume for him. Like I said. Not our most prepared this year. While searching for cool costume ideas for kids that use wheelchairs we came across a bunch of really cool ideas. Like…
Read More
Getting a diagnosis: Confessions about my Quasimodo moment

Getting a diagnosis: Confessions about my Quasimodo moment

Blog
My sister has a disability and so I started young in the disability movement. And I was passionate and clear that our society devalues people with disabilities and that this causes more problems than disability itself. I was fierce. I had no fear. I was quick to call bull when I saw it. When I was 13 years old I was banned from my sister's elementary school because "I threatened the teacher's professionalism" by questioning how they treated her. I was hauled into the principal's office for calling out a teacher who had low expectations of what one of my friends was capable of. I organized and spoke at conferences. And when my son was born and he didn't breathe and needed live saving treatment I was (relatively) calm. They…
Read More
“Anything but sorry.” Canadian Down Syndrome Society’s new vid

“Anything but sorry.” Canadian Down Syndrome Society’s new vid

Blog, Commentary
Most of the material I see on Facebook about disability rubs me the wrong way. Even the super positive stuff I often find still misses some subtle and important point or feeds into negative stereotypes or roles of charity/pity.┬áBut this "Anything but sorry" video by the Canadian Down Syndrome Society is pretty good. It isn't a complicated message. And it is self-evident once communicated. Yet, it doesn't seem to be wisdom commonly held in our society. [embed]https://youtu.be/AfLfqC2sXOE[/embed] When my son was born he was critically ill. We weren't sure he would live. We ended up in a Children's Hospital far from our home. I was worried and frightened. My family was worried and frightened. Our head space was all stress. On his third day of life we received a large…
Read More
I won’t spend time to spread the word to end the word – The R word that is

I won’t spend time to spread the word to end the word – The R word that is

Blog, Commentary
I won't do it. I won't dedicate time to "spread the word to end the word". The "R" word. I will point out to people who use the words retard or retarded as an insult or derogatory term that this is hate speech and ask them not to do it again. Most people tell me that's not what they meant. But it is. It is no different that racial slurs or saying, "that's so gay." I agree with this critique of how the word retarded is used in common speech. It is awful and hateful and people should absolutely have the courage to call people on their hate speech. But I think that the broader effort of the campaign to end the use of the word retarded is, well...a bit…
Read More
What does your child have to tell you on World Children’s Day?

What does your child have to tell you on World Children’s Day?

Blog, Commentary
"On World Children's Day, let's stand together with the world's most vulnerable and hardest to reach children." "There can be no keener revelation of a society's soul, than how it treats its children." ~Nelson Mandela. [embed]https://www.youtube.com/embed/eRqfDal53as[/embed] World Children's Day is a day for children's voices to be heard. A day for children to act. A day to┬ástand together with the world's most vulnerable and hardest to reach children. I wonder, even in our societies with sufficient resources to easily provide for all our children, how well we have been respecting the rights of our children with disabilities. How often do we listen their voices? How often do we heed what they say about what is important in their lives? How many children with disabilities know that they have rights? Do…
Read More
That time my kid got invited to a game

That time my kid got invited to a game

Blog, Commentary
It is every parent's biggest dream and worst nightmare. Will she get invited? Will he be left out? What if nobody like my child? What if my child feels rejected? Gut punch. The actual worst. It really is. Rejection is painful. It cuts deep wounds. That is why we fear it so much. The threat is real. But...the consequences of not getting out there? Well, nothing. A life of nothingness. So we gotta do it. We gotta get out there. Or find someone who can get out there for us. And its not about just randomly showing up. You know that person that inserts themselves in a social situation without any reason or context for being there? Ya, it is kind of awkward, right? We have to help our kids…
Read More
Why the Good Things in Life?

Why the Good Things in Life?

Blog
Why am I doing this? We all want the good things in life. Regardless of time or place, there is pretty universal agreement about what the good things in life are. Home, relationships, love, community, some freedom, opportunities to make a contribution... But at some point in human history we lost the plot in respect to what we think is important for people with disabilities and their families. And we definitely lost the plot all together when it comes to figuring out how to support people. I was lucky. I had important, fulfilling relationships with people with disabilities early and throughout my life. I had the opportunity to learn about and deconstruct all the crap that our society teaches us without us even knowing it. I had mentors and teachers…
Read More