What it's like for me.....

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.

I have window lickers?

The previously promised Chapter 2 regarding Disney World and Autism has been postponed for this important announcement.....I am never taking my kids to the doctor by myself again...ever. I admit that I say this pretty much every time I take the kids anywhere but geez...today was a GEM! I idiotically scheduled myself, Nick, Max and my brother Jonathan appointments for the allergy doctor starting at 1:00 today. I usually take my brother along because he sees the same allergy doctor and to save my parents a trip. Ok....so my brother technically counts as another adult and I wasn't technically ALONE at the doctor with my kids, but it's kinda easy for them to get away from him because, well....did I ever mention that he's blind? So picture this as our foursome enters the doctor's office: Max is in search of sensory input as usual and runs directly into the paneled glass door of the front office (which of course made everyone in the very full waiting room look directly up at us.) Nick thought it was HI-LAR-IOUS that Max did this (plus it must've looked fun), so guess who also rammed his little body into the door....twice? Yup....on purpose...both boys get a lot of pleasure out of running into and bouncing off of stationary objects. So....we entered the waiting room....all eyes on us....the kids literally bouncing off walls, the mom, and the blind guy with his white walking cane....sigh. I signed us all in, moved us all away from the majority of people and tried to be inconspicuous. This is rather difficult when your 6 year old is into verbal stimming. Yup....got a lot of looks when Nick shattered the silence of the waiting room with his loud, joyous screams.

Max ran laps around the waiting room, harassed the injections nurse for suckers and threw a ginormous fit when I tried to contain him. Finally they called Jonathan up to fill out paperwork. The four of us made our way to the counter and were informed that we could split up....after all, we could fill out the paperwork separately to make it go faster. Really? I looked at the receptionist, down at my brother's cane and back again......she just blinked and smiled. Eventually I told her that I would be helping Jonathan to fill out his paperwork....unless they had a copy in braille.....duh!! So, I filled out paperwork while Nick shredded anything he could find and threw it up in the air like confetti. Max was engrossed in the I-Pad by this time, so we just had to put up with the occasional loud verbal screams coming from Nick. The receptionist just stared.....I had the notion to tell her that Nick has Autism as an explanation, which I often do in situations like these. I finally decided that, no.....I was not going to tell her! Nick is getting old enough to hear and understand what I'm saying and I hate to be telling people in front of him all the time, "Oh, please excuse him, he has Autism." I mean....if she can't deal with it, then that's her fault, right?

At this point, they wanted to take pictures of both boys for their records....yeah....seriously. I got Nick settled down for the picture just as a nurse called Jonathan's name for his appointment. I waved at her and told her that we were taking pictures and we were ALL going into the appointment together. Again....another blank stare. So, I crossed the room, explained the situation and walked back over to the little office where picture taking was in full effect. Apparently Nick had already had his picture taken, because the receptionist was asking him to get out of the chair and let Max sit down. Nick ignored her and stayed put.....Max ignored her and played on the I-Pad....Jonathan was just standing there. I finally physically picked Nick up and sat Max in the chair. He immediately realized he was having a picture taken, which really pisses him off. He hunched down in the chair and tucked his head down like a little turtle in a shell. Every time I sat him straight up, he immediately hunched back down with a scowl on his face. Finally the receptionist just took the darn picture and sent us on our way...yup....the nurse was still standing at the door waiting impatiently.

We finally entered the tiny little patient room (after surprisingly uneventful height and weight checks) and waited for the doctor. He entered the room almost immediately.....could it be that he heard us coming and wanted to hurry our asses out of there?? So...picture 5 of us in this tiny room, and I am trying to talk to the doctor and let him know what's been going on. Max is watching Cars 2 on the I-Pad blaring loud and Nick is jumping onto the bed and off the bed, rolling around, doing his screams and occasionally running over to hit Max or run into the door. I am quietly telling Nick to sit down, stop hitting his brother etc and my brother is....yup....just sitting there. At one point I could tell the doctor was about to lose it....he tells Nick, "You need to listen to your Mom!" Haha! Well....by god if someone with a PHD tells you that, then you'd better listen. Whatever....craziness continues. Eventually it is Nick's turn to be examined by the doctor. As soon as he realizes that he will endure something being stuck in his ears, nose and mouth, he freaks out. He slithers off the table and starts the screams that let me know that he is NOT happy. The doctor was getting frustrated and pissed and told Nick, "Oh, come on.....it will just take one second!" I finally snapped and hissed to the doctor, "he has Autism and he does not like people to touch him and put instruments in his ears, etc." Apparently the light bulb finally came on and the doctor put the thing up to his ear and told Nick he was going to count to three and it would be over. I rolled my eyes, but then something amazing happened. Nick allowed the doctor to look in his ears, nose and mouth....each time the doctor counted 1.....2......3 (and so did Nick) and then he was done. He listened to Nick's lungs by having him blow out a big breath (and even demonstrated it)...because Nick didn't understand what he meant when he was asked to "take a deep breath." Finally we finished out the appointment (in mostly one piece) and went to check out. It took FOREVER and I was finally unable to contain Nick any longer. He burst out of the office and into the waiting room. I just let him go.....I was trying to help Jonathan with the credit card receipt and help him navigate the office.....you can only do so many things at once. When we were finally done, we went to collect Nick who was standing at the glass window, next to the front door and facing away from us. As I got closer, I saw it.....Nick was licking a 12 inch streak on the window. Seriously? I abandoned Jonathan and grabbed Nick....I didn't think anyone saw....that is...until he decided to do the same thing on the wall next to the window. Then I looked over and saw the huge smear his tongue had left on the window and two girls in the waiting room giggling uncontrollably. We hustled out of the office with Nick making pit stops to lick the outside wall, the elevator and everything else he could get his tongue near. I mean......seriously.....I have a window licker? My brother just shook his head and said, "I'm not gonna say it." I pressed the issue and he finally says, "I don't know what's worse....going out to eat with you guys or going to the doctor with you!" Well, that got a chuckle out of me.....but it's the truth...and the reason I understand when people don't want to be in public with me and my two window lickers....it's exhausting! So...mission accomplished and it was only 2:00 (I think they hurried us out of there) LOL.....so we headed out to do the second most exciting thing of the day.....lunch at Red Robin!