You know, the question that usually gets a "Oh fine, how was yours?"
Well, NOT today people! Here's a little insight into the world of a family with Autism for those of you that don't know much about it. Yes, I said FAMILY, because although my son is the one diagnosed with the Autism Spectrum Disorder (Asperger's Syndrome), it affects our entire family.
Oh where do I even start?
One of the ladies that I work with has 4 grown children, and she loves little kids. She often babysits for another co-worker, her two dd's, ages 3 and 6. She lives right down the street from me and invited my two and the other two girls over to get out the scissors and glue and make Valentine cards. My ds is 7 and he has met these two girls before, though it had been while. So I think OK, this will be fun, right? All the other play-date disasters are a faint memory and I think this time will be different.
We get to her apartment and it is small, I mean SMALL. It is cute, and decorated very nicely, but with her, my other friend and her 2 dd's, plus me and my 2 dc's, plus 2 other girls that were there? There is tables with cute breakable stuff, oh my... Small warning bells are starting to go off, but I think hey, it's ok, right?
So we all sit around the coffee table with an array of tissue paper, glue sticks, scissors and cardstock. Everyone gets into, and what are my two doing? Fighting over who gets to roll the toy ice cream truck through the 'car wash', which is a tassel hanging from the end of the table runner. Well there is only one, so now there is a kid at each end of the table tugging on the tassels, and did a mention the scissors and glue on the table??
Then ds decides he wants to have juice, so we go into the kitchen, and see all the pizza boxes on the counter... We had eaten leftover pizza from the night before for dinner just before we got there, and he wanted more. So he starts yelling at the top of his lungs that he wants more pizza. he wants more pizza, and getting louder, and he says he is going to keep asking me until I give him the right answer.
Did I mention how small this apartment was? We are around the corner out of sight, but literally like 12 feet away from everyone. The little kids sitting and working on their projects so nice. So now my ds is crying and screaming that he wants more pizza, and I tell him that if he can't calm down we will have to leave, right now. My dd heard me say this and comes running, screaming that she doesn't want to leeeeeeeeeeeeeeeave!! So now both of them are crying and screaming in the itty bitty kitchen. Fun times.
So he calms down after our host offers him something to drink. My dd had already had some OJ, so she goes to get him some, and he starts up all over again that he doesn't want OJ, he wants water, OK fine, he gets some water. He drinks the cup, and fills it and drinks it, and fills it again. By then, we are laughing a bit and cooled off some, so I think, OK, we'll give this one more shot.
so we go back to the coffee table with the Valentine stuff, and he sees dd with the ice cream truck, and it's game on again. He starts yelling that he doesn't want her to play with that and that he is just going to grab it out of her hands if she wont give it to him. The he says that he wants to run away. WTH?? He says he wants to run away from me because I am not nice and sister is not nice, and yada yada. He says he wants to hide, so think OK, I can find a quiet corner and he can cool off and re-group. so he goes around the corner and sits on the stairs for a few, and that is well for a bit. Until dd decides she wants to play on the stairs too...
Both of them are screaming that they want to be on the stairs by themselves and I want the lights on, no I want the lights off. I can feel the eyes of every single person in this little tiny apartment burning a hole in the back of my head.
They know he has ASD, and they know a little about it, but you know how it is with people that aren't family or close friends that don't see first hand. I could tell they were thinking Whoa!
So I maneuvered dd back to the table to make cards, finally, and told ds he had five minutes. He was OK with it and she was happy gluing for a bit. Then I told him he had 4 minutes, then 3 minutes, 2 minutes, and it was all good. When one minute came, then he decided he wants to make cards. OK fine, you can make one, and then we go. Nope, I wanna make a bunch! No, you can make one or we go right now. Back and forth and I said OK, time to go! Dd stands up and put her shoes on right away, which was nice! I turn around to ds and he wants hugs and kisses because you never, sniffle sniffle, give me, sniffle sob sniffle, aaaaaaanyyyyyyyyy!
Hugs and kisses, and then shoes go on, then I turn around to dd, and she has taken both shoes off and flung them across the hallway. Nice. So I get her shoes back on and just as we almost make a clean getway, I hear my ds say to the 3 and 6 year olds "I hate you and don't want to be friends with you!"
I wanted to die. I said I am sorry to my friends, I am sorry they aren't behaving and I am trying to leave with a shred of my dignity, and I can see that that may not even be possible at this point. I had each one by the hand and said bye and went out the door.
I can imagine the silence that followed our departure! I get about 1/2 way to may car and realize we left all the cards we made inside, but forget it I am not going back in there. A few more steps and I realize I have also left my camera in there. SH*T! So I turn around and open the door, and strangely enough they were both quiet, and I asked ds to apologize to the other 2 girls, which he did. then he reached into his pocket and pulled out 2 hazelnuts (he collects them when we go to the park) and said he wanted to give them each one. I could see they were not sure what to do or say since he had been pretty much screaming the entire time we were there and they were scared!
So off we go out to the car again, and before I even get my keys in the car door I am bawling my head off. THIS is why we don't do play-dates, THIS is why I shop by myself and why we don't do restaurants. THIS is why we don't have any close friends because it is just too hard. No one wants to be around a noisy, obnoxious kid all them time, no one.
I keep thinking after time passes that one of these days he will be OK and we will be able to enjoy being out of our house for a change. I think how nice it would be to go to someone else's house and letting the kids play and not wonder how I am going to get a screaming kid and a preschooler into the car by myself when one weighs 75 pounds when it gets ugly. I want to take them to some kind of music lesson or something, I want to feel like I am a good mother and not one that other people look at with pity or disdain because my kid is acting horribly. They either think I don't care or I am not raising him right.
And even if they aren't, that is how I feel. I have such a thin skin to this and I can't imagine what it will be like on Tuesday when I go back to work and see my two co-workers. I am so embarrassed. And then I am ashamed that I am embarrassed because of how my son acted. I KNOW it is the ASD, I know that. I know he has high anxiety and has to repeat everything over and over and blurts out the most inappropriate things and is rude... He has to have things just so, and I know that.
Our life revolves around him and his rigidity, his routines, his quirks. We do everything to accommodate it and make sure he will have predictability everyday. My husband and I have our schedules set up so that everything is the same, we eat at the same time, he gets the same foods, he wears the right clothes (the Hanes socks with the blue letters on the bottom, because one day I got the ones with green letters and oh what a fun day that was!!), you name it. We do it all. And I feel like it is just the endless cycle of nothing, because he is still obscenely argumentative, disruptive, irritable, rude and so loud all of the time.
And yet other times he is so sweet, and so helpful and every once and a awhile he will do what I ask without arguing and I about fall over because I am braced for this huge struggle, and it's not there! But that is hardly ever, but it is just enough to give me hope...
...And I think just maybe it will be better next time, after this memory fades, and I am sure in about 3 or 4 months we will get an invite to something, and I will try it again.
After I got home I came in and sat at the computer and cried. I took one look at my dh and he took the kids in the other room and got them ready for bed, and away from me for a bit to relax. My son just came in here and handed me this notebook and told me "Daddy told me to write this..."
I think I was laughing and crying at the same time! Gotta love that man :)