The hub’s works 50-70 hour weeks in order for me to stay home with the kids. This is the way it’s been long before I got sick. I was just lucky I had stopped working before getting sick. While me being sick has changed the role of stay at home mom for us, it was an easier transition than if I had been working.
The hub’s takes off very few days. Typically any off days but Sunday are focused around mine or Riley’s appointments. Because of the possible spinal fluid leak I had to do a series of week long tests this. We were not able to know ahead of time what the times of each appointment would be day to day. So he took a week of vacation in order to make sure these tests got done. That is just part of marriage, right? In my eyes yes.
What makes the realtionship though are the times he held me when I cried because I’m afraid, the never ending jokes to get me out of my own head, making sure I’m eating and doing all the things I seem to forget about, and the icing on the cake…lemon bars. Out of nowhere I started having a craving for lemon bars. I posted on Facebook a few times about it…finally flat out telling my sister she needed to make me some.
Yesterday after a long week for himself as well, he went to the store and bought the stuff to make me leomon bars. I just ate another and as bad as I feel, that lemon bar made all the difference in the world. You see he’s dealing with his own stress, seeing me hurting, worrying about and raising kids, and then work. But he has put all of that aside this week to help me through it. To make me lemon bars.
I decided to call this blog/page If You’re Flappy and You Know it for a couple reasons. The first being the first time Riley ever followed instructions was when I was singing that song. So much so that I sang it all the time and added more and more crazy steps. Each one helped him follow multiple step instructions. The second being I saw the happy brought to Riley when he flapped. Long before I decided to reach out to find others who might understand our journey I was saying “Happy and flappy.” Even at that stage I knew how important it was that he be able stim. That he needed it to regulate so many emotions and feelings. We were lucky that while I had to push for him to be able to stim in school he was able to somewhat. This year he got the greatest teacher who knows her kids and just rolls with the stims.
I keep seeing so much about the fidget cubes and spinners. So many people are getting a little glimpse into the ADHD/Autism world without even really realizing it. These things are a real tool for so many people to get through their day. It just so happens this now the latest toy craze.
We all stim (self-stimulating behavior). I am a pen tapper, swayer, knee shaker, and doodler myself. Oh where are all my fellow pacers while talking on the phone? Yep, even that’s a stim. So I personally think these things making it into the main stream have opened up a door to the not so main stream. I know I’ve had talks with people about how they’re used to help kids like Riley and all of a sudden his flapping makes sense. Piper has told me about talking about it with kids at school. So wooo hooo for some awareness. But and you know there was going to be a but, not enough people are talking about what they were made for. Not enough people are saying yes, that kid who is flapping is no different than you in this way. They just are flapping, finger flicking, pacing, rocking etc. instead of tapping their pen or shaking their knee. It’s all helping you both deal with a situation. One is just not considered the norm. One might seem over the top. But it’s the same thing. So if you see a kid out flappy and happy or flappy and angry even remember that fidget spinner you got your kid and thought was so fun. Oh, by the way Riley has spinners and a cube. He thinks they’re stupid.
I am trying to get the house cleaned up for family coming in for Riley’s first Special Olympics meet in a couple of weeks. The problem is that I am not supposed to do much because of the leaky brain and meningitis. Well the real problem is I can’t do much really. I’ve been told before to stay in bed and it hasn’t ever stopped me. I can’t manage more than 20 minutes of cleaning before I have to rest. Reaching over my head to doing anything is near impossible. If I bend over the vertigo is bad. If I climb up it hits bad. I’m a freaking mess. So you can imagine just doing the usual stuff for the kids is hard now. but I am doing as much as I can,
I got a lot done today without hurting myself too bad. Piper was helping and chatting my ear off the entire time. I decided to come into the computer room and either mess around on Facebook, or take the 20 minutes to straighten the toy and jacket explosion. Open up good old Facebook and every single post in my feed is from the PTO at Piper’s school with pictures of the father daughter dance. She had already asked her Daddy and he wasn’t able to do it because of work. So she wanted to ask her Uncle Steve. Then I got stuck in the hospital and I forgot all about it. She was hanging out with me begging to help me clean, instead of at the dance. Now don’t get me wrong she loves to clean. Which is surprising because she is a mini hoarder who wants to recycle everything into art. But I know a lot of her enthusiasm is because she wants to help me.
See those cute pictures with all the little girls dressed up with their dad’s made me think. Am I failing them as a mother? Yes, I know these are some strange and special circumstances. Every person I know is giving me shit about worrying about cleaning for company. And I truly am not worried about it because I refuse to make myself worse. But you see while I was in the hospital they were scared but they were having a ball. Big brother, trampoline, Uncle Steve, the park, Aunt Sally, cousins…pfffftttt I get it.
But does this mean those things were so cool because they never get to do that with me. I can’t do the park and Riley with the way I move. I can’t get on the trampoline. I try as hard as I can to do what I can with and for them. And I know while it’s not enough it’s all I can do. Is my health messing them up? My inability to be the mom I used to be. I try. They’re always in the front of my mind. Something I can do with them to give them the attention they need and deserve. Why do you think I have to clean for company? Because it’s all about them and I save my energy for them. By not being able to do some of the normal things am I messing them up?
They’re great kids. They’re caring, funny, smart, goofy, loveable little people. Who have had to deal with a lot for their ages. Up until now I really thought they were fairly well adjusted all things considered. But this makes me wonder if I am way off. I’m terrified I am failing them.
I’ve been in the hospital with bacterial meningitis and what they believe is spinal fluid in my mastoid cavity. So putting it mildly I am sick. Like seriously scaring me sick. I’m in a lot of pain and am fairly well medicated…So bare with me.
I have never been one to ask for help but from a few people. I don’t even take it when it’s offered. Even when I do need it, I will just figure it out myself. The sad thing is most of the reason I say now is because I’m embarrassed by how my house looks. Now I was never Suzy homemaker. If you remember I’m a stay at home mom..Not a housewife. Just as I was first getting sick I was picking out paint colors to paint just about every room. That I’d course didn’t happen. Add in 2 kids, 3 dogs, a kitten, and me with a broken body well my house is nothing like it used to be. We have oil heat so we get this crazy film on the walls. I always did a deep spring and fall clean. It’s been 2 1/2 years. So you can imagine. I can’t scrub, bend over much, or really do much.
I realized I have about two and half weeks to get my house in order for company. Some of which will be staying with us. It’s all family. Who knows I’m sick. But still I don’t want to be embarrassed. My plan is to try and do one thing a day that I can. If I can’t I might have to ask for help. It scares me that I am to this point. I might have to accept this whole you’re really sick sick. This might not ever go away. I might not ever get my old life back.
Then again I might just say fuck it and get the few super important stuff done. Let everyone just deal and be happy they’re here. I just don’t know if I can do either of those.
Time for my yearly PSA. Today is officially Spread the Word to End the Word Day. Otherwise known as don’t be a flaming asshole and use the word retarded or tard in any way shape or form. I am not a person to police others language. I curse like a sailor as you all know. For the most part I believe that words are just words and we grant them power. Of course there are some exceptions to this. One of those words for me is retard. I will be the first to admit I used it for a long time in the same manner most do. To put myself down or say that something was stupid. I know I never would have thought to direct it at someone who had a cognitive delay. I like so many other people just saw it as a word.
Then I had two amazing little people come into my life who were/are cognitively delayed. All of a sudden it took on a new meaning. I have paperwork with the words mental retardation on them in reference to my son. When you see it writing like that it changes everything. The thought of someone calling him a retard took on a whole new meaning. You see if you were to meet Riley you would fall in love. I’m not saying this because he’s my kid. I’m saying it because it happens to everyone. He has this love of life and people that you can’t help but be drawn in by. Riley has a heart that doesn’t understand why people would be mean. Why anyone would hate. With all that he struggles with to get through what is an ordinary day to you and I he never loses his positive outlook. His favorite thing is to make people laugh and he has never met anyone who is not his friend.
Yes, it’s just a word. But when you go to use it I want you take a minute and picture a person. You know someone with a cognitive delay. Everyone does. Picture that person and think of how they would feel if they heard it. Even if it’s not directed at them. You see my son knows what that word means. He knows that he struggles with things and his brain functions on a different level than the typical person. Now he also happens to know he is smart, caring, loving, funny, and brave. But when someone says that word around him it destroys a small part of that spirit that makes him so great.
There are tons of other words you can use as an insult. If you ever need help coming up with creative ones please hit me up. I have a million.