Awareness
April is Autism Awareness Month. In fact, World Autism Awareness Day was April 2, 2016. All over the Internet, on Facebook, Pinterest and other social media sites, we are bombarded with images promoting awareness. We’re told to “Light it up Blue” for Autism. There are lots images popping up in support of autism, expressing feelings of being proud of our children and appreciating what makes them special. These are all great things but, honestly, it feels forced or fake. I mean, I love my autistic son just as much as I love my other child (who has, as yet, unidentified special needs). I agree that each child with autism is different and most don’t “look” autistic. I agree that they do things that make me proud, but there are those days…
One saying is that Autism is more than a diagnosis. Quite true. However, for so many families (like ours) it was a lifesaving diagnosis. The diagnosis shed light on all the quirky things that were going on that we didn’t understand. It opened doors that were formerly closed without a diagnosis; things like occupational therapy, assistance from the schools and many more.
One particular type of image that really gets to me are ones like this:
To start with I do not like this photo. 80% of autism diagnoses are in male children. Diagnosis cannot be done before age 5 due to brain development, although I do believe there are indications from the beginning, thus “early intervention” techniques. I do agree that we are now on an unplanned journey and I do love my quirky kiddos, but let’s be honest here. There are days I don’t like them. In fact, there are days I really wish there were exits off this road we are on. A way to take a different journey; maybe the one I dreamt of or planned. To just walk away and not look back. Oh, how there are those days! In this photo and many out there advocating the love of our kiddos, this falls short. The child is neither male or old enough to have the official diagnosis.
One blog I recently discovered is called Autism in Our House. On April 1 she posted on her Facebook page the following:
Two years ago, I started a group of posts called...drum roll please...Autism In Our House for Autism Awareness Month.
Autism in our house is having to have the seams in your socks lined up just so but the ability not to notice wearing shorts the wrong way all day. Autism in our house is wicked sensitive. The kind where worry over someone can make him sick. He loves all living things...non living too...
Autism in our house is a week long struggle over finding the right mediation that insurance will cover. Autism in our house has co-morbid conditions ADHD and anxiety.
Autism in our house is almost always an explanation but never an excuse. Autism in our house is neither feared nor hated; it is self-advocacy, education and acceptance. It is growth through challenge.
#AutismInOurHouse may not look like autism in your house, and that's okay. There's room here for all of us.
I love the way she phrases things. I totally relate. I could basically cut and paste so many of her household issues. So many of us deal with the same struggles with our own kids, and yet we tend to feel alone. We all have various situations and I feel like the awareness campaign, while a great thing, doesn’t cover all sides of the issue. The campaign is about being proud, self-advocating, pushing for education and acceptance. What it doesn’t cover is the stress and emotional roller-coaster that each day presents, not only for the brilliant kids involved, but for the parents and families who support them. This is a hard journey to follow. It’s stress, tears (for both parents and kids), anger (again, both sides) and, sometimes, laughter.
So, the following is Autism in Our House:
Meltdowns over what seems like nothing
Emotional roller-coasters over seemingly nothing
It’s allowing them to wear whatever shoes they want, even if it’s summer and they chose snow boots because they feel good.
It’s cutting tags off shirts because they feel like thorns and Band-Aids just don’t fix that. (credit Fowl Language Comics ©Brian Gordon)
It’s taking the time to make sure the socks are on right and don’t have holes, aren’t “itchy” and come up the leg to just the right spot.
Constantly worrying over everything. Are we doing enough? Are we doing the right things? Should we or shouldn’t we medicate? and so on.
Arguing that, just because you mentally understand grown-up material, doesn’t mean that you are emotionally ready to deal with it. This includes books, movies and video games.
Arguing that, just because you fit the rated age, some shows aren’t good for you and over stimulate you, even cartoons.
Homeschooling and the daily battle to stay focused and do the work.
It’s allowing sweat pants to be worn in public because they are the only pants that can be worn, even though you swore you’d never let your kids do that.
It’s always being on edge when you are out of the house, not knowing if the next meltdown/fight is just around the corner.
It’s planning to walk out the door a half hour before you really need to, so that you can actually leave on time.
It’s spending way too much money every time you go to the store because you give in and buy what they ask for just to keep the peace.
It’s never watching a TV show or movie in the allotted time or watching the same show/scene over and over until you’re breathing it.
It’s carrying a purse as big as a diaper bag to make sure that you have snacks, activities and a change of clothes for a short outing because you just never know.
It’s negotiating every meal just so they eat something.
It’s fixing multiple meals because what you fixed wasn’t what they wanted or because they changed their mind.
It’s not going outside because of bugs.
It’s co-sleeping, even when you swore that would never happen or they are just too big now.
It’s never having quiet time again.
It’s never having “dates” again with your significant other.
It’s walking the fine line of fairness to each quirky kid, while balancing age-appropriateness.
It's realizing no matter how hard you try, something will seem unfair and there will be issues.
It’s playing judge and jury over every little thing.
It’s obsessions with Legos, Star Wars, superheroes, Dr. Who, Minecraft, rocks and gems. (Although, to be fair, that’s just good parenting.)
It’s an eclectic musical playlist
It’s leaving a destination early, even when you are enjoying yourself, because they can’t handle the people, the light, the noise or whatever.
It’s scanning Pinterest/Facebook and other places online for tips and tricks for ways to soothe or deal with one issue, only to find that it doesn’t work for your situation.
It’s spending hours and hours reading, researching and seeing doctors and therapists to learn how to best help your family.
It’s never feeling like our house is adequate enough to accommodate all the items that come with helping your kids deal with their sensory needs.
It’s having people give you advice on how to discipline your children, or even judge your parenting skills because they don’t understand.
It’s having people be shocked because your child seemed “normal” to them.
It’s being constantly disappointed in the people that you naturally would have expected more help from.
It’s having charts and schedules on your walls instead of art, and constantly changing them because they don’t work and you want to try a different one.
It’s having every surface of your house covered in unfinished projects.
It’s depression and anxiety and self-doubt, both by you and them.
It’s toe-walking and attachment issues.
It’s multiple diagnoses (ASD, ADHD, ODD, SPD, etc.) waring against each other.
It’s finding surprising moments of humor and joy and love.
It’s pretending to be fine, even if you feel broken inside.
It’s this and so much more!
It’s an “adventure with quirky kids.”
This is my Autism Awareness.
