I’m going to put a video up today. The autism community right now is torn by the whole should we or shouldn’t we debate. There is a good chunk that started a movement and some others think it’s the wrong time. So before a debate ensues I will preface this video by saying that we live awareness every single day. Not just one month out of the year and if we wait we lose a teachable moment. This is the time when our many of our kids are struggling with transitions in adjusting to new schedules. People haven’t been around many of our kids for 2 or 3 months so they forget how our kids are in reality and need a reminder.
I’ve heard firsthand how this movement makes it sound like we are stealing ALS’s thunder and how it seems like we want a cure for Autism. The timing is all wrong. We should pick a national charity and the list goes on and on. Em and I threw caution to the wind. I talked with her and SHE wanted to do it NOW. She doesn’t want to wait.
First and foremost, I need to put this out there as anyone who knows Em and I know that we have embraced her autism. It wasn’t easy. I don’t always love it but at the end of the day, Em and I don’t think Autism needs a cure. There is nothing wrong that needs to be fixed. Autism is part of who she is but it does NOT define her.
Second: Like I said Em and I talked about what the challenge represented and what it would be like. We chose to do the challenge because of what it represents. If you have EVER had pie or sticky stuff on your face (or skin) you know how irritating it can be. For someone with sensory issues, like many people with autism have, it can be a nightmare. What you don’t see in that video is the mad dash and challenge to get it off our skins ASAP. Pie was chosen so people can experience a moment that is often what these kids deal with 24/7.
Third and Fourth: We are not trying to take anything away from the ALS challenge. In fact Em is doing the ALS challenge this weekend. To be honest though, it’s not new either. It started in May or June and has gone viral the last few weeks. You can’t open a newsfeed now without seeing someone doing it. But like ALS, individuals with an Autism Spectrum diagnosis live these lives EVERYDAY. The challenges don’t stop when a “specific” time period does. They live with this day in and day out. Both need donations. ALS is seeking funds for research to understand more of how it develops and new innovative treatments. Autism charities need donations to help families struggling to get therapies, communication devices (such as dynavox systems and iPads with programs and PEC Boards), and respite care. Local charities get forgotten unless it’s April and people are promoting advocacy. Em and I don’t stop advocating. We move forward everyday trying to advocate for everyone.
And the last reason we did it is too often kids on the spectrum age out of the system. Once they hit 18 it seems like society forgets about them. We need more programs to assist Adults on the spectrum. Not all spectrum adults are self sufficient or able to garner meaningful employment that they can maintain. We need programs to mentor and assist them and their families.
Em and I asked for donations to be made to local charities so that you can see your donation hard at work in your community. At the end of the day, we’re just trying to bring awareness to something that we and many others we know deal with everyday. Unfortunately, it’s not being understood.
That being said, we hope that you’ll consider donating and doing this pie challenge. Otherwise, please enjoy the video and thanks for being here. We won’t be offended by those who don’t do it.
*Jenn and Em*