I like to blog about the way Autism affects my children....the things it steals from them, the gifts it gives them and their triumphs and defeats. I don't blog a ton about the way Autism affects me....but I think it's important and I have some things to say. First of all....Autism SUCKS! It took the image I had of my family and shattered it to pieces. What would I give to have the worries of typical parents? Pretty much anything. Did you know that Autism is REALLY hard on marriages too?? I've been told that over 80% of marriages end in divorce if they have a kid with Autism. Did I ever mention that I work in Law Enforcement? I have no idea what the divorce rate is for cops, but it's gotta be way up there with Autism. I'm lucky to have a supportive, caring, involved spouse....he made the decision a long time ago to "get on board" with everything Autism. But....truth is....I'm about as close to a single parent as you can get without actually being a single parent. I have very few people that I trust to babysit my kids. They've never been to "daycare," partially because I'm terrified that they won't be able to tell me if something bad happens. So....my husband and I work opposite shifts.....we literally trade the kids off at work. Right now we are lucky because we have 2 whole days off together....but that also means that I am alone with the kids 5 nights a week. My nights can easily become frustrating, lonely and overwhelming. I'm pretty sure that we'll all make it out alive and hopefully one day we can get on the same shift and have more time together.
I know it's hard to believe, but I tend to talk A LOT about Autism to anyone who will listen. Unfortunately I'm finding out that most people don't want to hear it. Autism has affected my friendships tremendously. I can pretty much say that I have one real, true friend in the whole world. She's been there for me for over 23 years....she has typical kids....she lets me cry and vent and feel sorry for myself when I need to. I am SO grateful for her. I also talk to my mom quite a bit.....she's walked the walk as far as raising special needs kids. She understands EXACTLY what I'm going through. She guides me, but she doesn't let me wallow in self pity too often. On the other hand, I can't keep track of the friends (or potential friends) that have fallen victim to Autism.
Some of my former friends don't have kids....or don't like kids....and they really just don't understand or care. Some of them used to try and include my kids in birthday parties, get togethers and such, but eventually just found it too frustrating. It hurts me....A LOT....but, I understand. My kids frustrate the hell out of me! As they get older and their differences become more apparent, I find us being excluded from more and more birthday parties, BBQ's and play dates. The thing is....Nick and Max don't even realize it or feel hurt by it. When another kid is mean to them and refuses to play with them or won't let them play with their toys or says something hateful....well.....they really don't even notice. I guess that's good? Sometimes I wonder if it would be better for them to understand friendship and want to have friends, but have difficulty making them or if it's better this way. At least they don't feel left out, let down or hurt. But I sure do. I want to lash out at those kids or the parents who ignore us. God....I know we're better off without these people in our lives, but it still hurts so bad. We've been invited over for play dates in the past. I remember one where the other mom looked so harried and freaked out when we left.....we never got invited back. I've wanted to ask some kids over for play dates only to be shut down by their parents before I get the chance. I have been humbled by the kindness of some of the kids in Nick's classroom this year. They have tried to include him and talk to him and learn about him even when he doesn't talk back or answer questions or try to learn about them. I don't know how long that will last, but it warms my heart when I see it.
I've had other parents make it very clear to me that our kids are not really friends....I guess it's not o.k. for their kid to have a friend with special needs. I mean....I know my kids aren't going to help your kids learn how to pretend play, ride a bike or shoot hoops, but I think they can teach a lot about patience, compassion and enthusiasm. The things you model for your children will shape who they are as adults....and who wants their kid to grow up to be an asshole that thinks they're better than everyone? I bet you'll wish you raised kids with patience and compassion when you are elderly and need help caring for yourself. Yes....my kids have a lot to teach....and a lot to learn if given the chance.
I've had really good friends just flat out write me off because of Autism. They can't stand the "perks" my kids receive because of Autism. Free Preschool, fast passes at Disney and "excuses" for their bad behavior. So, yes....for me Autism is extremely lonely. It's almost harder to make friends with other parents of kids with Autism because they have the same challenges we do. We talk the same language and understand each other, but we just don't have a lot of time for each other. Wouldn't you know it, but we tend to judge each other as well :) What do you mean your kid isn't gluten free, casein free, soy free, artificial dye free, homeopathic, b12 shots, supplements etc?
So....if you're reading this and you feel like I've latched on to you, I'm sorry....but I'm lonely and bored. If I won't shut up about Autism and my kids, I'm sorry. It's who I am....it's who my kids are and I can't change any of it. If you can't deal with us...the whole package....then you're not worth our time anyway. But that doesn't mean that I'm not hurt or lonely or sad about it. It also doesn't mean that I'm not proud, happy and content with my family. I couldn't imagine us any other way.
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