So summer is winding down and we are getting ready to head back to school. There was a bunch of summer parties, picnics, trips to the beach, vacations, visits to the amusement parks and all kinds of fun to be had – but not for us. When Autism is in your family, things have to change.
Sure, in the beginning Hubby and I were really bitter. We missed out on a lot of family events. We used to have huge parties at the house with tons of fun and food. Oh how I love to entertain. I love spending days in the kitchen cooking and planning. I loved taking a week to figure out exactly how to make a crazy cake that looked just like a pirate ship, complete with dingy and figures floating in the ocean with life preservers. It was a joy to share an entire day with family and friends just sitting and talking while the kids ran around in the yard. It was picturesque and I loved it. But that is not my life anymore.
Now I worry when someone comes to the house – will the boy be able to handle another person in the house? We get our diffuser going with our favorite calming blend of essential oils – cedarwood and orange or Valor. I then pray that all will go well and he won’t decide to throw a toy across the room at our guest, or bite them, or pinch them, or… you get the idea. A get-together here, forget it.
What about going out? Going to a family gathering? Step one, keeping all the kids calm in the car so the boy won’t have a meltdown from the noise. We have a car diffuser, it works great for calming but there is only so much you can do. I mean kids make noise. Happy noise or cranky noise, it doesn’t matter – a meltdown will ensue. I mean the poor boy can only handle so much. Have you ever had a child have a meltdown in a moving vehicle? It’s no fun. Trust me. We aren’t talking about a temper tantrum here, we are talking about an overload for a child where they can no longer control themselves and need to escape from what is causing the overload. Think about that, let it sink in. Most times we travel in two cars in order to avoid the dangers of a 10-year-old boy getting violent in a car.
And we haven’t even gotten to the gathering yet.
Or thought about the drive home.
My son is 10, but he doesn’t understand that he can’t eat some foods because of his allergies, or even because 3 cupcakes is just too many. He wants them anyway. If he doesn’t get them, he gets MAD. Mad for a non-verbal child isn’t pretty. Yes, we deal with it at home. Yes, he gets told no at home. But that is at home, where surroundings are familiar. Where he isn’t fighting with new smells, sights, noises, people and a complete circus of sensory overload. It still isn’t pretty sometimes, but there aren’t dozens of eyes watching us struggle. Judging our every move.
These are just a few of the things Autism families have to deal with. We haven’t even touched on the idea that the boy can not be left unattended, so one parent has to literally follow him around and stay within arms reach at all times. Makes it kind of hard to socialize. Or to enjoy the gathering. Or to relax. So why exactly are we there…
Yes, Hubby and I tag team so that each of us can have some time to talk to people. But the truth of the matter is that it is beyond exhausting. Worrying and being on constant guard for hours is stressful. We do it if necessary so that the other kids can be a part of what is going on. But the truth is we hate it. Hubby and I get little down time, even less time together and it seems like mere moments each week to actually enjoy each other’s company and make our marriage work. That is important and I talk more about it here. We don’t get to relax each day after kids are in bed, we have to listen for the boy at night too. Oh the stories I could tell you about him finding trouble in the middle of the night!!
So one of us stays home with the boy. I mean it’s not like we are together when we are out anyway – one of us is always off chasing him. I would much rather be home without any help then out and about having to deal with Lord knows what. I mean have you ever had your child hurt another kid? Or spit on them? Or lick them? Or kick at them? Have you ever had your kid break something at someone’s house? Or overflow their toilet? Or eat their toothpaste? Or put a hole in their wall? Or put handfuls of mud in their pool? Or strip down to run to the bathroom? Or just pee in the middle of the park off the top of the slide? Sure, it’s funny when it’s the toddler years. We’ve all been there and been embarrassed by some of these things. But we are talking about a 10-year-old boy, not a toddler. People are so accommodating of the little ones, so very understanding.
But my boy is not little anymore. If my boy kicks your 3-year-old it’s going to hurt. Your precious little 5-year-old girl is seeing a boy naked, not a baby but a ‘boy’. And it isn’t going to get better as he gets older, it is going to get worse.
I don’t want to deal with that.
I deal with enough crap every day of my life.
It is like this for many Autism families. What we need from you is understanding. We need you to accept that there are things that make our lives harder, not easier.
We don’t deserve harder.
No matter how much fun you think our other kids will have at little Molly’s party.
We know already that the other kids are getting the short end of the stick. Yes, we know that it really does suck that they can’t do all those fun things that you think they should do. But they can’t, and I’m not going to stress out the entire family because you think I should. We make our choices, we decide what we can handle and what we need from you is respect. Siblings of Autistic kids are amazing. They have trials and a life that makes them into unique and amazing people. Just like those kids of that single mom who can’t go off to camp every summer because of finances – my kids will be just fine.
Support us. Help us. Sympathize with us. Pray for us.
Don’t judge us and don’t pity us.
My kids have fun and we can be a family when we do things my son can handle. It’s not about me. It’s not about you. It’s about US.