J-Bear and Me

learning to navigate the world, j-bear style

Tag: awareness

Autism Awareness

So we’re getting to the month of April, and April 2nd is Autism Awareness Day.

Now, this is where things get hard.

I can no longer support Autism Speaks. I cannot support an organization that relies on terror to spread a message, that cares not for the damage it does to individuals in the pursuit of more money that isn’t necessarily going to the community they supposedly serve. I keep in mind that one day, J will be an adult with autism, and I want him to know that he is embraced for who he is, and that autism is part of that package deal and it is not something to be feared, demonized or treated like a plague.

Numbers were released by the CDC today that showed a marked uptick in autism cases in children. The numbers feel flawed to me. They were only taken from certain states, for example, rather than a sampling from all 50 states in the union. Also, why does this number matter so much? Does one person with autism deserve less care if there were only ten in the country as opposed to hundreds, thousands, even millions?

No. These are our children, our brothers, our sisters, our cousins, our aunts, our uncles, our friends… These are people.

How often do you hear about adults with autism in the media? How often do you hear about them in a positive light?

These are the questions we need to start asking. We need to start putting role models out there for the children that the news focuses on. They deserve to see where they can go.

Yes I can get on a soapbox with the best of them!

A lot of families who live with autism every day say similar to this but every day in our lives is autism awareness day. We live it and breathe it and struggle to learn to speak it, and it’s a remarkable journey to be on even when it feels so bewildering and frustrating and harrowing. Every step, every lesson… It’s all amazing. J creates the rules then breaks them and makes me learn everything anew and I have to admit the challenge is invigorating. Not everyone can step up to the plate – we’ve already had people fall to the wayside in our lives, by their sad choice – but those who do are richly, richly rewarded.

Someday I will learn to write more neatly and straightforwardly. That day, alas, is not today.

Road ID

So. One of my big things with J is making sure that somewhere on his person is something that can identify him. He won’t tell you his name, so something visible and readily available to whoever he encounters feels a must to me. He also has MedicAlert, but that doesn’t quickly give the person in front of him his name and pertinent information.

Last year, I got dog tags made for him through My Precious Kid and love them. They come with nifty little carbiners plus silencers, so I would stick them on J’s shoe and off he’d go. Unfortunately for me, this doesn’t work with most sneakers and we’re getting into a season where sandals aren’t entirely appropriate. I could stick the dog tags on his coat but he isn’t always wearing that. When he is out in public he does indeed have his shoes on the bulk of the time… so I went searching.

A few months ago I had ordered a Big Red Safety Box from the National Autism Association. It has some great stuff including a coupon to receive a Road ID. Don’t know what a Road ID is? Check them out at their website.* I was dubious at first. All I had to hold this thing onto J’s shoe was what seemed two flimsy pieces of velcro. The plate I had made was quite nice and I could jam pack information onto it. These guys, they knew what they were doing when they made this product. I am unsure if they knew the impact it could have on children like mine but it’s a wonderful little thing. Wary of how well it would hold, however, I stuck it on his sneaker and have been kind of standing back over the past weeks to see how it works.
I am pleased to report it works great! When he comes home from school I’ll snag a picture of how they fit onto the sneaker. I love that I could word what needed wording in a pleasant manner, alert people to the fact J is non-verbal and point them to immediately call me. He still has his dog tags, mind you, but this is a great addition to our safety items.
A completely dorky aside: I am loving being a crash test dummy to finding things that work to help these kids and our families. Using Mabel’s Labels has been a blast, using the dog tags and shoe tags has been amazing… Who knows what else I will find!
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*= in the interest of full disclosure my link to Road ID is an invite link – any who make orders from it will help earn credits towards future IDs J may need. If you aren’t comfortable with that, it’s cool, just go to http://www.RoadID.com and purchase via their site without any affiliations. It’s all good. 🙂

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