What The Hell is Going On?

Ever since Riley got off the bus this afternoon I’ve been thinking what the hell is going on. He’s just been off for lack of a better way of putting it. Obsessed with a movie he wanted me to download to the point it triggered a meltdown where I was told I’m the worse mom in the world. And I’m fairly certain I heard the word dumbass when he was yelling from upstairs. So in other words a full force grade A autism meltdown. He’s been chewing on his cuticles and nails which means his anxiety is up, but no matter how hard I try I can’t figure out what is causing it. Then I looked in his backpack and see that he brought someone else sweatshirt home. Not a big deal. I told him to just tell his teacher and she would get it back to the owner. It freaked the poor kid out. I never could figure out what it was he thought I was saying. At one point he was blaming his Dad for something to do with it. I was only able to calm him down by telling him I would email the teacher and she would take care of it. He didn’t eat all of his dinner either. My boy doesn’t stop eating his krabby patties for anything.

So here I sit up since 3 am with a throbbing arm praying he goes to sleep soon. Wondering what the hell is going on. Is this the calm before a bad episode? Is he getting sick? Will it be days before I get an idea of what is going on so I can try to help him? It gets exhausting all of the worry. I would give my right arm (it doesn’t work right anyway) to be able to get inside his head for just a little while. To be able to help him to navigate it all. Piper gets upset or feels bad and she tells me what it is and I do what I can to help. Even when he tries and there are times he works so damn hard to tell me what’s going on, most of the time I can’t help because he can’t get a full explanation out. There should be some parental remote control where you can hit info and figure out what the hell is going on with your kid.

Don’t Touch The Walls, Bubby

We took the kids to the drive in last night to get one more movie in before winter. The drive in has sort of become our fun thing to do this summer. Larry has been working a crazy amount of hours and Riley’s tics and stims are fairly loud at times, so the drive in has been a perfect fit for us. My arm is still killing me and in general I’ve just not been feeling that great so we probably should have stayed home but we really wanted to get them out for a bit. As usual whenever we go anywhere Piper has to use the bathroom at least twice and on trip number two Riley decided to come along. In a perfect world I could send him into the bathroom alone and wait for him outside. But when you have a kid who has never met a stranger and has no sense of personal space, the last thing you’re going to do is send them into a public bathroom alone. We all piled into the fairly empty women’s room and after they both were done I decided to chance going myself. I told them both to stand in the corner right in front of the stall door and wait for me. That’s when I hear Piper say “Don’t touch the walls, Bubby. They have yucky germs on them.” I come out and see that she’s holding his hand to keep him in one place. We did the whole hand washing routine and notice again she’s holding his hand before I can even try to get it. It was really dark as we are walking back and I can hear her reassuring him that we were almost back to the truck and there was nothing to be afraid of. The whole exchange made me start thinking about how she automatically “handles” him in certain situations. Before we left for the movie they both were super excited and bouncing off the walls. When we were packing up the truck and waiting for Larry to come out I saw she was holding his hand because the gate was open. When they crawled in the back to get comfy I heard her tell him to put his shoes in his seat so he could find them.

Now I don’t expect her to do any of these things. She’s only six years old and it’s not her responsibility to look out for her big brother. But I’ve also accepted the fact that she’s 100% my kid when it comes to this sort of thing and she is just being herself. It’s hard to find a good balance with it really. I don’t want her to mother him but at the same time I don’t want to stop her from looking out for him. In his own way he looks out for her too. If she’s in a mood and getting mouthy and he thinks she’s going to get in trouble he will do his best to try to distract us. If she doesn’t feel well he will get her favorite pillow or a glass of water for her. So it is truly a two-way street in the way they look out for each other. There are those times though like last night when I see so many small instances of how much she takes in and just naturally cares for him that my heart swells a little with pride.

Being the sibling of a kid with special needs isn’t easy. You don’t always get the attention you need and deserve. You don’t always get to do the fun thing that you want to because it’s too much for your sibling. You don’t always get to do things because medical bills mean there just isn’t the extra money. But you also learn things that the average person doesn’t. You learn from an early age that it’s ok to be different. You learn to celebrate small accomplishments as well as the big ones. You learn that you can make a difference in someone’s life just by being there for them.

I’m not cut out for a life of leisure

* Warning- This post is being typed mainly one handed. Give me a break on the typos I don’t catch*

So about 6 weeks ago I fell pretty hard and messed up my elbow. See my post  It felt just like when I had tennis elbow a few months prior so I wasn’t that worried about it. Problem was that it just never got any better, in fact it’s been getting worse. Last week it finally got to the point where I was having trouble holding on to things and couldn’t really function properly. Let’s just say we’ve been eating out a lot lately. I broke down and made a appointment with my doctor to get a cortisone shot on Thursday. You see it has to be really bad before I will go and see my doctor for well anything. I’m not sure why really. He’s a great doctor and everything I just deal enough with doctors for Riley.. I don’t have time for the shit for me. So, I go into the doctor thinking I will get a cortisone shot or two and be on my way to A-Okay. Except the doc wouldn’t give me the shot because he was worried I may have a fracture that wasn’t healing properly. So I was told to have an x-ray and if it came back negative to start oral steroids and come back and see him in a week if it wasn’t a lot better. Thankfully it wasn’t broken but I’m sitting here still in just as much pain and supposed to take it easy. He actually told me no repetitive motions or lifting anything heavy. How the hell am I supposed to get anything all housewifey (that is a word because I said so) done without repetitive movement or heavy lifting?  Actually I am at the point where I couldn’t do it if I wanted because I can’t hold on to any damn thing. So, I’ve been hanging out on the couch with the pups binging on Criminal Minds and Law and Order SVU. Googling shit like poisonous spiders in Ohio and why do dogs roll in smelly stuff. Yes, I did Google both of those things today because I am that fucking bored. Question for any dog lovers about the smelly stuff thing. Have you ever had your dog roll around on something that smells good? Memphis drives me crazy trying to lick lotion off my hands and yesterday was trying to rub his back on my leg after I put some on. It smells like vanilla cookies so I don’t think at least its cause its smelly. But I will throw it out there anyway. See I’m so freaking bored I’m now asking stupid questions to anyone who might pay attention. I am so not cut out to just sit on my ass. But I will admit I’m not complaining about having an excuse to not wear a bra.

The dreaded IEP

If you’re not familiar with an IEP it stands for individualized education program. In a nut shell it spells out the goals for education, behavior, and any services provided through the school for the year. We have been lucky that I have always been pretty much in agreement on Riley’s every year. Anything I don’t agree with has been changed quickly. He’s very fortunate to have an amazing teacher who not only knows and just gets him but is willing to really push him. This isn’t the case for so many parents. I know of horror stories of people having to get attorneys and advocates involved and still not always getting services their child requires.

So why is it the dreaded IEP? For me I always question if I’m not asking for enough or the right things. I of course research the hell out of each section and normally feel pretty confident it has all the right things in it for him by the time the meeting rolls around. While that part is stressful it’s just part of the process. What always gets me is the first reading of it. When you see your kid dissected into every little thing they can’t do. Every “undesireable” behavior, stim, tic, and quirk in black and white it sort of hits you in a weird way. It used to upset me because of all off the things he wasn’t able to do. I got over that quickly because he always proves that wrong when he’s damn good and ready. The behaviors I think will always upset me when I see it in black and white. I question every aspect of those sections more than anything. I’m not talking about how he handles meltdowns or frustration. He has to find ways to deal with those so that he can function in this world. If I don’t agree with how something is being handled it’s changed right away.

It’s the stims and tics that I worry about most. I’ve spoken to so many autistic adults who were told as kids they had to have “quiet hands” and how that affects them still to this day. It’s those things that are for lack of a better way of putting it are typically autistic. The things that he does to deal with stress or excitement. The things that make him stand out in a crowd. You see I don’t care that he’s flappy. Yes, there are times we have to tell him he needs to take a break so he can answer a question from scripting, flapping, or pacing. But I know that’s just him. I get that he can’t do XYZ during learning time because he has to concentrate on the task at hand. But I also know he’s miserable when he can’t do them when he needs to. There is one person on his team who has told me on two occasions her job is to make him “as typical as she can.” While I told her both times that is not her job. Her job is to help to learn to navigate in this world to the best of his ability, it’s not to take away his autism. Because simply you can’t. It’s just how he’s made. I worry if all of this is some attempt to change him and maybe not to the benefit of who he is . Mind you all of his differences don’t just come from autism. He has a laundry list of other diagnosis that all make up this really cool little person. He’s a complex little dude that’s for sure.

It boils down to the worry every parent has about their kid; their future. I don’t know what he will accomplish in the years to come. While that’s scary I don’t know that for Piper either. I can deal with that unknown, but I worry that I’m not letting him be just who he is enough with all of this. That I’m either not doing enough or doing too much.

How we make our marriage work as special needs parents.

I see a lot of posts about the stresses of being a special needs parent on a marriage. Often they will quote statistics of higher divorce rates or stories of spouses not being involved in the care of the child with special needs. With each post I read I think of all the couples I know that aren’t heading for divorce court and all of the parents who are bad ass parents. I’m not sure if the statistics are true and honestly I’m too lazy to go and research it. But from my little slice of the autism world I call bullshit. Now I’m not saying that marriages don’t fall apart (I was married once before) and I’m not saying there aren’t some crappy parents who don’t take care of their kids because the kid has special needs. I’m saying I don’t think it’s the norm.

But enough of that tangent this is about the fact that having a kid with special needs does give you added stress as a couple. Just like being broke, losing a job, having a sick parent, losing a parent, losing other family members, or one of you dealing with health issues adds stress. It’s all just part of life. It may not be the way you planned it but you do it because that’s just life. And if anybody knows just life can be stressful it’s a special needs parent. If you read relationship articles they will tell you to make sure you have regular date nights…yeah right. First you have to have a sitter you trust with your kid and then you have to have the money to do said date. When you have a kid who has medical issues your extra money goes to paying for doctors, therapies, procedures, medications etc. The other thing you will see if keeping your sex life alive. Easier said than done when you’re trying to stay up later than your insomniac kid. My other favorite is keeping the lines of communication open. Does relaying what the daily behavior report says count while both kids climb all over you?

All kidding aside (ok, I’m only half kidding) I think the reason we have a strong marriage is because we laugh…A LOT. We laugh at each other, we laugh at our kids, pretty much anything we can make into a joke and do. Most people don’t sit in the ER thinking they’re having a heart attack and have the whole staff laughing their asses off. We have done this on a couple of occasions now.

Yes, we stress everyday about both of our kids. But we stop each other from letting it take over. Usually by making the other laugh. It may not seem like much but when every day is so stressful finding something to laugh at makes us stronger.