I am just another face.... Just another person living with chronic pain. Many people don't get it. Many people think it's bull shit. I'm here to tell you, it's real. This is my life. This is me.
What did I do today to be in so much pain tonight? Normal housework. I did the dishes, cleaned the bathroom and did 3 loads of laundry. Doesn't seem like much does it? Tell that to my body. This is my face tonight:
I am fighting back tears even as I sit here and type.
It hurts to sit, to stand, to walk, to cry....
There are people who think that fibromyalgia and chronic pain is a joke. That it's fake. That we are using it as an excuse to be lazy. I know this. I have been told it many times.
Do I look like I am faking it? Do you think I enjoy knowing that simple tasks such as housework, or a game of catch with my boy, will leave me chair ridden for at least a day or two??? Do you think this is the life I chose????
It's the life I was given. I won't back down, and I won't give up. I'll do what I do every other day. I will suck it up. I will wipe my tears, and I will keep on keeping on.
Not for me really, but for my son. Because he deserves more. Because he doesn't understand why mommy cries so much.
This is really something that I, as a human first, and mother second, struggle with.I need control. I need to be in charge. I need to know what is happening and when, and DO NOT make plans with out telling me. Last minute things bother me.
But it's more than that. I have an image in my head of how things are supposed to be, how they are supposed to look, and how they are supposed to go. You know, in the grand scheme of things. Over the years, I was disappointed when the grand scheme didn't meet my expectations. It's cool, I am learning to let go.... mostly....
Except where "art" is concerned. I am ANAL about how any art is supposed to look. Therefore teaching Liam art is so hard for me. He wants it his way, and I want it mine. I know, that's not right, but I can't help it. It's the way I am. I am learning to back off, I really am....
Case in point: His current obsession is The Walking Dead. ALL THINGS WALKING DEAD!!! Oh and coloring. So, he is having me go online and locate/print coloring pages of the Walking Dead. We have been coloring, A LOT!
He has been choosing the more open pics to color for himself, and leaves the more detailed ones for momma. I LOVE it. I have ALWAYS loved to color. I would rush my drawings in art, just so I could get to the coloring part. I digress.... Last night, he had a picture of Michonne. It was SUPER detailed and I wanted to color it, as did he.
He started to color it, HIS way. When I looked up and saw that he had colored Michonne gray instead of a darker brown, (she is a gorgeous African American woman) I got upset. "You made her look ashy! Her skin isn't gray, it's a nice dark brown Liam!" I said. I realized as soon as it came out that 1) it sounded mean and snotty, and 2) I broke his heart!
My heart sank. I felt horrible! I hurt my baby's feelings, and even worse, discouraged his interpretation of art. I stopped what I was doing, and told him how sorry I was. I explained that I was wrong. That everyone has their own way of viewing things, and it was wrong of me to push my views and interpretations onto him. I then worked on encouraging him to finish the picture.
He finished coloring Michonne HIS way. It really is lovely. I will NEVER get rid of this picture. It will be my constant reminder that I can't control everything...
I have to let him view the world through his own eyes. I have to let go....
Trigger warning:whiny mother who feels defeated, deflated, and discouraged.
Do you ever feel like no matter what you do, it's going to back fire in your face? Like you're caught between a rock and a hard place???
As a special needs parent it's our job to prepare our kiddos for the world (to prepare the world for our kiddos) and to combat any issues that may arise in this process. Many of our autie kiddos are VERY dependent on a schedule, on their routine, and anything less really creates an issue for them. Which inadvertently creates one for us.
So we all know that when schedules/routines need to be changed, it's our job to prep our kids. (yes, sometimes we can't, that is life, and we have become accustomed to dealing with that fall out.) But the times we do know in advance, we prepare.
Lately, preparing Liam for any routine changes seems to cause MORE issues for him. Thus creating more for me. For some reason, when I tell him what is changing, he spends almost every waking moment ruminating on these changes. For instance, tomorrow I have an appointment in the am. When we get home his MT will come for 2 hours. Then the neighbor kids are getting off the bus here. After that an OT will be here to evaluate him for services from his cyber school.
While this may not seem like much to us, to him this is huge. I told him this morning what was going to take place tomorrow. I knew a busy day, that is out of our "norm," warranted some preparations. Instead, all it has done is given me a head ache and him more things to worry about.
His mind is thinking of every damn thing that could go wrong. Even things that won't go wrong. It's creating scenarios about tomorrow that will never happen, but in his mind, they will. I feel awful saying it's annoying me. I know how bad that sounds. I also know how badly it's affecting him. But I did what I have always done, which is prepare him for the changes in the day ahead. I am thinking that I made the wrong decision....
So I am left with, next time, do I tell him and watch him ruminate all day? Or do I NOT tell him, and then deal with the fall out? See what I mean? Rock and a hard place.... Is there even a right answer??? I am by no means a perfect mom. I know this. I just want to do what's best for my son. Sometimes I'm not just sure what that is.....
When you yell at me because I can't make phone calls, my heart shrivels a little.
When you nag me about getting my license back, my pride ebbs away.
When you get angry because I don't want people over, it embarrasses me.
When you tell me I'm lazy because I am too tired to get out of my chair, it angers me.
I wish you could understand why I am the way I am. I wish you "got it."
Let me help you try.
I don't like to leave the house because I feel safe here.
I don't like to go to other people's homes because I feel out of place, like I don't belong.
I don't like to go out in public alone. It makes me very nervous. I feel a million eyes on me, and it makes my skin crawl.
Answering the phone, and not knowing who is on the other end, makes my heart race and my palms sweat, and a sense of panic rolls over me. I am often at a loss as when to speak, and I fear I will cut someone off and make them angry. I sometimes take over the conversation and then I feel they think I am selfish and rude.
Making phone calls is almost as bad. My brain gets wonky and I forget what I need to say. If I write it down before hand, I can often psyche myself up and make the call, but even that takes a toll on my nerves.
My mouth lacks a filter and sometimes I spew forth things that I shouldn't say. I can't help it. I don't mean it. I am honest to the point of hurting others and that makes me feel bad. I am often afraid to speak. Sometimes when I do, and I hear it coming out of my mouth, I shrink a little. I know that I just offended someone and I know I can't take that back.
I don't want my license. I know when I get it back and you have a bad day, you will expect me to run errands on my own, and I know my nerves can't handle that.
Sometimes being social is like work. I know you don't get that because you are a social butterfly. I am a "hide in the corner and hope no one notices me" person. I would love to be invisible.
I don't want to move out of my comfort zone. I like it here. My bubble is safe.
My friends live in my computer because I don't have to face them. I can hide behind my screen, but be my real self, and I don't feel judged. If I type something wrong, I can edit it, or even delete it, and I feel safer that way. I don't have to look them in the face, and I don't have to feel their eyes on me.
I know this may sound ludicrous, but this is my struggle. Everyday. I wish you got it. I wish you knew. I wish my shoes fit you, so that for one day, you could experience the world, through my eyes.
As a special needs momma I have heard a lot of talk of poop problems. Thankfully, we don't have too much of an issue with that here. Or so I thought.... Up until now, our biggest issue is that Liam has IBS which means he is either constipated or has diarrhea. (We did go through a phase where he would hide when he had to go. He was about 5 or so when this took place. He would hide because he didn't want to stop playing to go poop. It was about 6 months before he stopped doing that and we were back to "normal." Our "normal.")
We then went through an, "I don't know if I have to go or not" phase. Where he would scream and cry because he couldn't tell if he had to go, or just had gas. We are still partially in this phase as it rears it's ugly head at least once a week. How do you explain to your autistic child when they have to poop??? I mean, when ya gotta go, ya gotta go. I have no words for that. It's a feeling. To me, it's indescribable.
Now we have a new phase mingling with that, which is, he doesn't want to poop. Yes, you read that right. So now, when he can tell he has to go, he SCREAMS. He cries. He tells us, "I don't like the way it feels." Does it hurt? Nope. "It feels gross," he says. So either, he can't tell that he has to go, or he can, and doesn't like how it feels.
So I wonder, how as a parent I can help him through this. I mean, I know it's sensory. DUH, that's a given. But how in God's name do I make this okay for him???? It's pooping. It's a natural part of life. He HAS to poop. How do I make this easier on him????
"I wish I could stop eating so my body would stop pooping!"
The worst part of being a parent is when there is something ailing or bothering your child, and you as his/her parent can't fix it. That's our job. They look to us for guidance and help, and when we can't give it then what?
I am at a loss so any advice here is appreciated and welcomed. PLEASE, help me, help this kid poop.
(Oh, and he still doesn't wipe himself. He will try once in awhile with A LOT of prompting and begging. It's a germ thing. He can't stand the thought of wiping his own arse. We pray this ends soon because I can't be wiping a 30 year old man's butt!) So any advice there is also appreciated! (btw, we have tried wet wipes, bribing, begging, sticker charts, making him sit there and refusing to wipe it. That was fun. He sat there and screamed til he was hoarse and I ended up wiping him any way. Iron will in this kid!)
Well if you must know, they are REAL, all me baby!!! Oh wait, I was talking about trees, not my boobs! Sadly our tree is fake. She's a cutie though. However, I would be lying if I said I didn't long for a REAL Christmas tree.
The scent of pine. The needles in the carpet (hey the fake tree sheds too, and they are a b!tch to vacuum up too!) The excitement when you find the good luck bird's nest in the branches. Hoping you don't find a squirrel ;) (Come on, that made for some funny movie memories in Natl' Lampoons!)
More over, what I miss is the family time, and the memories we made. We would bundle up. Complete with scarves wrapped around our heads and covering our mouths. (ok, that part I hated. Something about slobbery yarn covering my face still makes me gag. MOUTH BREATHER!)
We would be bundled head to toe (except the one year it was so warm, we went wearing shorts, damn Mother Nature!) and head to to the tree farm. We didn't sing Christmas Carols though.... We sang along to the radio. So at that time it was Madonna, Tears for Fears, Phil Collins... You 80's babies know what I am talking about ;)
Once at the tree farm, we walked for what seemed like miles!!!! The snow was always deep because it drifted up around the trees. Daddy would NEVER choose a pre cut tree. That would be too easy!!! Actually, in his words, "pre cut lose their needles too fast. WE need a FRESH one!" And so we did.
Then came the dysfunction, which of course would escalate as the day wore on. Dad wants this one. Sissy wants this one. Bug (that was my nickname) wants this one. Mom agrees with dad because they were so in love, they just did that. Vice Versa if mom saw one she liked first, Dad would agree with her. The dilemma! Which to choose. Dad would come and look each tree over. It was like a modeling contest for fir trees! He got to make the final call. Then it was cuttin' time!!!
We ALWAYS argued over whose turn it was to saw the tree. I don't understand why we did that, now. We NEVER cut the whole damn thing down! We would make a few passes, and then whine it was too hard. Daddy would then take over. He would sometimes give it back to us at the end, and let one of us make the final cuts that would knock our tree loose from the stump.
Time to drag this damn thing to the car. Now that we are in Timbuktu, we must get this bugger back to the car! There was a LOT of whining about this part. I won't lie, mainly from ME!!! Then my sister would be yammering, "SHUT UP Courtney! You're such a WUSS!!!! MOM!!!! Tell her to STOP!" Ahhh, I remember it like it was yesterday ;)
Once there, came the task of getting that bad boy onto the roof and tying it down. In those days, we didn't pay the extra to get it baled. Times were tough. So we fought amongst sticky branches, and pokey needles to get it tied down to the car. Well, mostly dad and mom. By this point the whiny kids (US) were put in the car to zip lips.
Now we had to freeze driving home because we couldn't ROLL (yep, roll, no electric windows for us!) our windows up, due to the tree ropes running through them. Once there, it was time to drag that bad boy into the house, and get it into the stand. Mom and dad at this point would get it set up. Maybe argue a bit over how straight it was, then get the lights on.
Sissy and I were now thawed out, and we knew to steer clear of the stringing of the lights. You see, this was the part that sent our calm and collected father over the edge. Matter of fact, if you heard, "You dirty rotten....." You RAN!!!! The slew of cuss words that followed would make a sailor blush! NO KIDDING!!!
Once that was said and done, we became a picture perfect family. The Christmas music came on. The decorating began. Now, with every ornament we took turns talking about the memory behind it. You see, many people do their tree in colors or themes. Not us. We trim our tree in memories. EVERY ornament has a story. Every ornament a memory.
This is the tradition I will NEVER forget. We still do this with Liam. We each put on our special ornaments. I tell Liam who got him what, and how old he was. Or how old he was when he made certain ones with me. I then put on the ones from my childhood, and we talk about my memories attached to each one.
Our tree is a story. A memory. Our lives. And that my friends, is one of the BEST parts of Christmas <3
Now that I think of it, it doesn't matter if our tree is real or fake. We still make wonderful memories with it. And we still enjoy the time together, trimming our tree. (there is just less freezing and bickering involved) :P
For your enjoyment, I give you, THE 12 PAINS OF CHRISTMAS LEGO style :)
For those that may not know: Last Monday, Autism Speaks told the world that autism is: . . . living in despair . . . fear of the future . . .exhausted, broken parents . . . lost, helpless, burdensome children . . . a national emergency
WHAT???? That isn't what Autism is to us? THIS is Autism, OUR Autism:
This is Liam. He is autistic. He isn't a burden. He isn't a tragedy. In fact, he is the OPPOSITE! Liam is a miracle! He is the baby I was told I would never have, and yet here he is. He is happy. He makes us all happy. He is loving. He is smart. He is kind. He is caring. I could list things all day of what he IS, and NONE of them are what Autism Speaks says he is. To know my son is to love him. I am guessing the folks at Autism Speaks don't really KNOW autistic individuals because if they did, they wouldn't have said such atrocities about my son and his peers. I won't sit here, and act like our life is all peaches and cream, because it isn't. Just like all other people living their lives, we too have rough days. Liam tries his hardest to overcome any and all obstacles that being autistic presents him. He's NOT lost, burdensome, or helpless. He's a fighter. Look out world, because he will take you by storm! We don't live in "despair." We live in HAPPINESS! Our lives are greater BECAUSE of Liam. He is our life and we wouldn't have it any other way. So, Autism Speaks, you lost a family that supported you. A family that thought you supported us. Do you even really care about our kids? Or do you care more about the money they raise for you in their names?
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