Blue, April, Awareness, Acceptance etc....

Most people where I live, if they know our name, (which they probably do because of our business in town) know which house is ours. If/when starting April 1st they see our house “lit up” blue and curiosity beckons them in the direction of google, they will see that it is for autism awareness. They may learn something about autism while they are on the internet and if in the future they come across my kids in our town which is a whole whopping 1 square mile (chances are it will probably happen at some point) maybe they will know a little more about them.

I know a lot of people have an issue with the color of autism awareness being blue. I know it is blue because when autism was first becoming well known there were far more males being diagnosed than females so….blue….it made sense at the time. I’m sure the intent was not to exclude girls from awareness.

It’s true there are a lot more females being diagnosed now. My daughter is one of them. I have one of each! To partially quote Jim Carrey from “Liar Liar”, “The goddamn [color] is blue!” and that is what people associate with autism awareness, so that is the color I’m putting on my house. If I’m going to light the outside of my house a different color for an entire month, I’d like it to be pretty obvious why.

Aaron and Rachel are collectively one of a kind where I live. They are non-verbal siblings. If there are any others like them here I have not been made aware.

I could spend my time trying to explain a multi-colored light (which yes, would also make sense but I would still have to explain) or advocate for another color, but I would rather spend the time spreading autism awareness to my teeny tiny town about my 2 non-verbal autistic children. That way should God forbid one of them ever need help, maybe there will be a greater chance of them getting help because everyone knows who they are and that they have autism and can’t verbalize their needs. Our town is bordered on 2 sides by a large, fast flowing river. Our house sits on said river. We have measures in place at home to prevent this from happening, but should one of them ever wander off I want to know that the community at large will help us out and know what an extreme emergency it will be.

I could also spend time shouting acceptance vs. awareness from the rooftops. In my experience, in order to accept something, one usually wants to have a good understanding or awareness of what they are accepting. I'm not saying that's the way I am personally, but that’s just the way most human beings are unfortunately. At this point I want to spread awareness. The people here in my town who know them already accept my children for who they are. I want people to understand them better. Most people’s understanding of autism is very skewed. “Oh your kids have autism? What are their special gifts?”

You know, Aaron and Rachel probably have special gifts. Who knows? They're both very smart. Since neither of them can speak functional English though, and Aaron has such severe sensory issues he’ll kick your ass if you get anywhere near his ears like Warren from “There’s Something About Mary” I want people to be aware of those parts of autism for the sake of my kids. Not to say that my kids don’t potentially have high I.Q.’s or some special talent that we have yet to discover. They probably do and those things are great. My I.Q. is 135 which affords me the intelligence to know that the people around my children need to know all sides of autism because we live in such a small community. I guess I’m just selfish like that.

So, if anyone in the autism community takes issue with my house being “lit up” blue (nothing to do with A.S. although I am neutral on that subject) I’m sorry you are offended or don’t like blue or whatever but as the old saying goes, “If you don’t have anything nice to say……”

I am a defensive person and I’m also Italian. It is in my DNA to argue and fight about stuff although I usually reserve it for defending my family or myself. Especially when my intent is to protect and educate others about my family and that is what I am attempting to do here.

As you can see I am getting defensive and nothing has even happened! There is a lot of infighting in the autism community and I think it is tragic. We could be spending our energy on so much more to help children and adults on the spectrum but some people just want to argue. Not everyone, but some. The ones that argue the most seem to have the loudest voices sometimes and I take great issue with that. They will come in and hijack any productive discussion and it always leads to nowhere.

Yes, even with the last paragraph I will get defensive and I think about all possible comebacks. “If you have a complaint you have to be prepared to have a solution or you can’t complain.” I am currently corresponding back and forth (with him directly) with Senator Barrasso from my state of Wyoming to try to have some autism coverage written in to any changes made to the health care law should Congress be able to get anything passed….ever. I have even asked to go speak before Congress. We shall see. I know I’m not bitching about insurance right now but I’m being proactive about something that plagues almost all of us in the autism community.

Thanks to everyone who reads my blog, loves my precious kids and puts up with my eccentricities. 

For anyone who has ever wanted to do a written journal but doesn't have time...

I've tried over the years to start hand written journals many times and other than when I was a weepy junior high and high school girl I was wildly unsuccessful. I even started journals for Aaron and Rachel at one point for them to read later when they are adults or when I am worm food so they would know some of their milestones and how amazing and brave I think they are…also unsuccessful. For some reason I seem to look at it like exercise, it's intimidating to me in a time sense in that I feel that I have to do all or nothing. I feel like if I go in there and write 3 or 4 sentences every day it would be like I don’t care enough to write more, but I simply don't have the time or energy to write more even though writing is in my DNA. That's one of the main reasons I do this blog. My grandfather was one of JFK's speechwriters and almost every member of my family ended up being gifted writers. I am a writer and I have to do it, but on my timetable.

At the end of every day though, I just want to fall down and relax, recover and read or watch TV, not recap or rehash events or emotions that are sometimes overwhelming and exhausting. The end of the day when the kids are asleep is my time to recharge. With journaling I always felt like I had to get in to my head too much and if I wait too long to write in it I get so back logged that it is then a monumental task that I am unwilling to do and I forget 90% of the days that I meant to journal.

I have also been having trouble keeping track of Aaron and Rachel’s milestones which is heartbreaking for me because to be honest they are quite few and far between sometimes. To lose track of things I hold so dear when the answer is so simple makes me angry at myself. Plus, doctors ask me some of these things and my memory sucks!

It seems though that I have found the answer to my woes. It’s these little ‘One Line A Day’ journals. I'm a grammar nazi and the "A" instead of "Per" part kills me but whatever. They last 5 years! You have a very limited amount of space to write, enough for about 4-5 sentences if you write small. Each page is its own date so you can look back on that specific date each year and compare the days without having to flip back and forth.

Best of all it’s really easy to do every day. I got one for my personal experiences which of course includes my kids so sometimes I’m being redundant but I don't care, and I got one each for Aaron and Rachel so I can give them the journals later. I can get all 3 done for the day in one commercial break from a TV show I am watching! (If I don't fast forward)

If nothing of note went on that day for the kids I just write a big “I love you” or some other sentiment unique to us so there is always something in the space.

There hasn't been one time yet where I have been unwilling or too tired to write in them and I am writing in 3. It’s that easy. I sound like a salesperson.

I know how busy life can be, how quick it goes by and how easy it is to lose track of things. If you ever wanted to journal so you can look back later, but are busy like me and are a mom or dad or just a busy human being you should check these out!

Some people in their reviews on Amazon got all huffy because they said they expected them to be the size of a regular journal (the size of a hard back book basically) and these are "too small.” Well geniuses, that is the point. It's called "One Line A Day" how big do you write? The book is 4”x 6” but I can get in a basic summary of the happenings of each day without a problem, and if for some reason I can’t, it’s my damn journal and I can let it spill over in to the next year’s same day and just figure it out a year later or the next or the next. BFD.

If you need more room buy a bigger journal.

I got mine at Barnes and Noble but I found out later they sell them at Walmart, Amazon and a couple other places for a couple dollars less than what I paid.  Especially at Amazon. The ones that I have are the ones specifically called "One Line A Day." The daily journal is blue, the mom journal is pink and they have a wellness journal that is yellow. I like them because the other brands seem to have less space to write and with the space already so limited I don't want to give up more because the journal maker wanted to put doodles or something cute on the pages. If I want something cute there I'll buy some stickers. That's just me though. As far as I can tell the insides of the mom and daily journals are the same just the covers are different, (they are decent hardback covers) but I still like having the different ones. It's a mom thing I guess. I haven't seen the inside of the wellness one. I looked in a bunch of different ones while I was at B&N and these were just the best ones to me but there are a lot of them.

I think these would be really cute gifts too. Especially for a new mom.

If anyone wants to check them out or buy one, here's a link to Amazon through Autism Daddy. 

Once you're there search "One Line A Day Journal."

And now I have to go clean bananas off the carpet. Maybe I'll write that in my journal later.