If you only have time to read one blog post right now, just go ahead and read this: My Broken Heart. Otherwise, carry on. I link to it again at the end.
Parents of autistic children are exhausted. When their wells run dry, they start digging. Often, autistic children don’t sleep well or much. Their extraordinarily sleep deprived parents are desperately trying to “reach” them and help them to belong in “our” world as much as they can by the time the child is six, when some say that the window closes. They’ve grieved things like graduations, weddings, slumber parties, and friendships – things we didn’t even know one would ever need to grieve. How can we help support them? Listen, learn, love, and be patient? Yes. But we also need to assure them that we, as a nation will take care of their children after they are gone. These kids can’t just end up homeless. Not on our watch.
I have a very soft place in my heart for people who are affected by autism. I grew up next door to a severely autistic boy and one of my best friends has an autistic daughter. I’m not aware of anything harder for a family to manage, although I’m sure there are other special needs which fall into the same boat. The emotional and physical challenges that these parents face are unimaginable for the rest of us. In spite of all of the grief, some parents manage to step up and grow beyond, to that place where only huge challenge can lead us to go. There they somehow find enough peace to set out to create a world more fit for their children.
Autism awareness has always been a part of my life. The other night we were at a restaurant playscape with a bunch of kids. I saw an older boy arrive on the scene. His autism was apparent to me, but not to the other parents. The boy was exuberantly blocking the slide. Some of the other parents began to look concerned. I just knew that somewhere in the restaurant there was a courageous mother and/or father looking on thinking, “You can do this. You can do this. My child wants to and can play in a social environment.” I figured it wouldn’t last long. Soon, the boy was gone.
I heard recently that if you have to spend time in a wheel chair, people will at first look at you funny and then just look away. It’s as if when we see someone with some type of affliction, we want to pretend that they are not there, that we haven’t noticed, in some feeble attempt to avoid causing any strange feelings. What you learn from the wheel chair is that people are people. We all want to be acknowledged, smiled at, and spoken to.
Autistic people experience the world differently than we do, but it’s still their world too. They don’t adhere to the social dogmas and constrictions of inhibitions like we do. It can make us uncomfortable. Often, we don’t experience autistic people at all because many of them are simply too overwhelmed by public situations to even come join. But when they do, I hope that autism awareness will have reached enough of us to where we open our energetic selves, arms, and smiles – welcoming the autistic, their families, and anyone with differences.
The latest statistics of which I am aware are that 1 in 155 children is diagnosed with autism. 1 in 100 for boys. There is no consensus on what is causing these numbers. What we do know is that families with Autism have challenges that make the rest of ours look like hopscotch. I came across this beautiful post by a father who is raising 3 children with autism. I felt that soft spot in my heart again as tears warmed my cheeks. With his permission, I am posting it for my readers. - Betsy Dewey
10 Things my Autistic kids wished you knew
Written by me, Rob Gorski (Lost and Tired) and dedicated to my amazingly beautiful children.
1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.
2. I’m easily overwhelmed because I see and hear everything. I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.
3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.
4. Please don’t be mad at mommy and daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.
5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.
6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.
7. My house might be messy sometimes. It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk..
8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.
9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more then my Lego’s.
10. I know I can be frustrating but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.
If you liked this piece, please read My Broken Heart or Thank You For Judging Me, you may appreciate these as well.
PS from Betsy – We need to do everything we can as a society to make the various therapies for Autism available to families who can not afford them. The price tag is hefty. I believe in small government, but I also believe that our small government (AKA - we) should do everything humanly possible to help those who are truly in need. Our nation is going to be faced more and more with the question of what to do for all of these children with Autism as they grow up. All of us need to concern ourselves. My friend’s financial advisor told her that if they can set aside $5,000,000, it should be enough to make sure their daughter has all of her needs met until she dies. My friend happens to be married to a brain surgeon. What about everyone else?
PSS from Betsy – Well, dadgummit. I’ve just gone and read My Broken Heart and my post pales in importance. Please read it. In an unexpected way, it will make your patience run deep and wide, and just might put your whole life into perspective. It just changed me. I can feel it. Thank you, Rob. Blessings on you, your family, and all of us.