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What are we teaching our children?

Written By: teamcharliebear - Sep• 03•15

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A couple days ago I reposted a story on Facebook about Ann Coulter and her use of the word “Retarded” in a not so recent rant. It was a response penned by John Franklin Stephens, the Global Messenger for the Special Olympics in Virginia. You can find that here if you need the reference to it.  In my reposting of the article I added a caption “Pardon my language, but F… what context you use it in, it’s not ok. Just stop it!”  Only, I didn’t edit any of my language. I did that intentionally to see if anyone pointed out my language as offensive.  I thought it would be a good test to see if it raised more eyebrows than the article.  For the most part it went unnoticed.  Then I received a message from someone who was disappointed at my choice in language. Which was fine, I was happy to edit the post, but it made me think.  Why does it seem like society, as a whole, will jump to correct foul language much quicker than they will correct someone for using derogatory terms against an entire group of individuals?  I’ve seen Facebook blown up over race issues and sexual orientations lately, but people seem less apt to correct someone for using the word retarded simply because “they didn’t mean it that way”.  Which made me think even further, what makes that word more acceptable?  Is it the fact that people with developmental delays often don’t have the ability to say anything to you about how it hurts them?  Is it because you think they’re too stupid to even know you are making fun of people like them?  When you make weird noises and hit yourselves to make fun of a friend who is not handicapped, do you assume it’s ok because you “checked the room first” and you didn’t think you saw anyone who would be offended?  It’s not ok and it never will be.  Let me tell you why…

Some disabilities are not visible.  Check your surroundings all you want, but you never know if you are near someone with a disability so can you really be sure?  Not only that, but what if your friend has a sibling with a delay?  What if you’re talking to someone’s mother. It doesn’t matter what context you use the word in, it’s painful to those that live with it daily.   I take offense to racial slurs as well as the other F word against same sex couples, but there is one difference that makes this particular word even worse in my opinion.  Every other group can stand up for themselves or at the very least respond to your hatred.  Even though I think Mr. Stephens did a very eloquent job in his response to Ann Coulter, he said himself it took all day to get that response out. What about those that will never be able to communicate the pain it causes them to see people seemingly making light of their situations?  What about the sisters and brothers or Mothers you are hurting.  You can argue with me all day long that words shouldn’t hurt people unless the intent is bad.  I wonder though, have you ever really thought about it’s intent?  I can be honest and say that I didn’t when I was a kid. I used those words, and I made the gestures thinking it was ok because I was just  trying to be funny, but guess what? It’s not funny at all.  This is my life! Don’t you get it?

Imagine yourself as me, who is always home with the kids. Seriously, ALWAYS  because that’s where my son with severe autism is the most comfortable. I do everything for him. I also get a front row seat to all his meltdowns and tantrums over not being able to communicate what he wants or needs.  I have weeks at a time that I clean fecal matter off of everything all day, everyday because he’s going through a transition period. Transitions to him mean the not so great behaviors come out. It’s either a smear campaign against it, or he revolts by not keeping his socks and shoes on at appropriate times.  He’s also going into puberty, but he still needs help with showers and potty trips. Which I’m sure isn’t fun for either one of us, but we do what we have to every long day. All the while, we’re still clinging to hope that the next day will go just  a little better than the one before.  Now imagine that you get MAYBE two hours out of the entire month to go shopping alone. Yes, gloriously alone without kids or anything! Sometimes I can’t even bring myself to turn on the radio because I just want to sing along to the sound of NOTHING for a minute.  You’d be feeling pretty invincible by the time you hit the mall or whatever, wouldn’t you?  So there you are, walking on sunshine down a hallway and you see some healthy kids, you know the kind, the neurotypicals.  As they pass you, one of them starts hitting themselves and moaning and tells his friend “jokingly” that he’s so retarded.  Maybe it shouldn’t bother you because the context it was used, but what exactly is the meaning behind it? Do they think that sort of behavior is funny?  I don’t.  I’ve been sitting across the room from my son,  and watched him self stimulate with a tail on a toy for an hour only to end up bursting into tears because sometimes it simply hurts to look at him. To see him so trapped inside his own mind. Other times I’ve had to physically restrain him for up to an hour at a time to keep him from hurting himself or one of us!  I don’t remember finding the humor in that situation either.  Believe me when I tell you I am a master at finding the humor in bad situations, but sometimes even I can’t find it.  I now know what I was trying to convey as funny is a very real, and often sad situation for a lot of people.  It touches everyone that is connected to a person with a handicap or delay, and I was a jerk for ever thinking differently.

I’m sure most parents teach their kids not to pick on anyone. I’m just curious if you tell them why? Do you use real examples of real situations? Use mine if you need to, but get the point across please!  I know I understand the reasons not to ever say that word a lot better now than I did. Hopefully you can too.  Also, to clarify, the person that sent the message to me corrects people for both kinds of language and is a good hearted person who I honestly respect.  He just happened to be the first one to point out my language and that made me wonder if people would be so quick to take someone to task over the other.  I know I have faltered in the past with friends who used the word and I didn’t correct for fear of offending them.  You know what though? Fuck that! From this day forward I will stand up for those who need our voices just as quickly as I would any other hate speech, without hesitation! I hope you will join me.

To whom it may concern…

Written By: teamcharliebear - Feb• 27•15

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I feel I owe some of you an apology. I really don’t know where to begin, but I know I simply can’t do this. I can’t run all over a town I no longer live in and rustle up a big to do about autism awareness this year. You have no idea how much of a failure this makes me feel like. I loved the impact we made on the community last year. Having people come and support and learn…it was amazing and truly needed! However, this year I simply don’t have the energy or time to devote to ordering extra lights and organizing an entire block party. I woke up at 3 this morning and couldn’t go back to sleep. My mind was racing with all the people I needed to call to make the thing happen and the overwhelming fear that I simply couldn’t pull this off while being 7 & 8 months pregnant! I know no one cares about excuses, but if you look at all the things that have happened recently: My mother needing a liver transplant and all her time in hospitals. My son becoming a missing person briefly, and all the changes he’s endured. There were some fleeting health concerns with the new baby, though we think everything is ok now, it’s obvious I have to take it easy. It’s a wonder I haven’t already suffered a nervous breakdown. Makes perfect sense that I would want to retreat and circle the wagons so to speak.
In short, I surrender.
I can’t save the world. I can’t afford any distractions. My family, which is getting bigger all the time, needs me. Springfield will have to keep the momentum that we built last year going on their own. It’s up to you guys now.
I’m proud to say that the Mayor’s office and the Andy SoldIt Team will be lighting the courthouse up again this year. I’m just sad to say it won’t involve a huge celebration like last year. Not one that I planned anyway. Still that doesn’t mean that you can’t buy a blue light bulb at Lowe’s and Home Depot to turn your own porch light blue. After all, that’s where we started and look how far the lights have traveled. I’m proud of my hometown and I hope they keep the love lights shining bright each year.
Thank you for your continued support. I only hope you guys aren’t too disappointed in me.

P.J.

New Year…New School.

Written By: teamcharliebear - Jan• 08•15

charlie and santaIn our last post I mentioned the problems with aggression that Charlie was having at his school.  Since then we’ve had two different IEP meetings to track the behaviors and to try and develop a plan to handle them.  Although I feel like we had a good team in place at the school he started last fall, they ultimately felt that they could be of no further assistance in our case.  Therefore, today we started yet another new school.  To say I was nervous about another transition for him would be putting it mildly.  He didn’t seem anxious at all when we left this morning, or when we arrived at the new place.  I was still worried that maybe it hadn’t sunk in yet when I left him there, but by all accounts he had a pretty good day.  Thank goodness!

I know it’s too soon to tell exactly how this is going to go for him, but I am really impressed with the staff so far.  The receptionist was so sweet to me this morning.  His new teacher took over 30 minutes to show me around and answer any questions I had.  No one made me feel like I was imposing by just being there or tried to hustle me out before I felt completely comfortable.  I should also mention that the classroom set up is amazing!  They use Christmas lights on the ceiling to avoid those noisy fluorescent lights, which I love!  There are pictures and labels on everything to help with communication at every turn. The tools and the experience they have are great and I feel really lucky (even if I am a bit nervous about another change) to have him there.  What’s even better is that they expressed how happy they were to see him and have him join!  This is a vast improvement from our old situations where I felt like people often referred to him as “a problem child” or in some cases just acted afraid of him all together.

I know it isn’t always easy, but I resent people who have the option to just seemingly give up on a kid.  In almost 9 years that’s never been an option for me where he is concerned.  I do understand  their need to protect the other students.  I understand that they wanted better for him than they could provide.  I can even respect that. Still, it’s hard to sit at a big conference table, in a room full of people who are collectively giving up on your child.  Especially since you’ve spent years fighting for everything he’s achieved thus far.  I understand it, but I don’t have to like it.

Time will tell if this school is the blessing it feels like it could be. I certainly hope it is.  So far so good…

Schools, Hormones, and Bears…OH MY!

Written By: teamcharliebear - Oct• 24•14

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I haven’t updated the page because I frankly didn’t know what to say. I still don’t, but if I keep bottling it all up eventually I’m gonna make a beeline through crazy and land straight up insane. We can’t have that. Not today!

Charlie was suspended from school today. He has had five accident reports filled out as results of his behavior. Today that escalated to him grabbing another student around the throat and throwing him to the ground “seemingly unprovoked” and “before one of the two paras could reach him”. I am not disputing that my child has aggression issues or that sometimes he can be hard to predict. I simply refuse to believe that “nothing” is causing such radical behavior. Instead of getting him a one on one assistant they apparently contacted another school to come observe him…before telling me anything about it! It’s scheduled to happen Monday and I was told when I picked up my suspended child today. Maybe I’m just hormonal, but to me it feels like they’re afraid of my son and are trying to shove him out the door! Even better is the rationale that they can’t handle him so they’re gonna call a pregnant chick to control him cause they’re afraid. Yep, that seems legit!

 

imageIf they don’t want him there, then I don’t want him there even more. He’d certainly be better off with someone who treats him like a boy instead of a monster. There are several things I feel we should try before moving his school again. That’s just another adjustment and it’s part of the problem now. He needs to have a one on one, but he needs less transitions per day. He can’t predict that much change. If he’s moving classes 8 times a day, let’s try 4 instead. Skip math all together since it’s only fifteen minutes (of him throwing a solid tantrum) and he hates that room for some reason. Suspending him today only proved one thing. How to make Mama show up and take him home, which is exactly where he wanted to be in the first place!

 

imageLuckily Dustin and John showed up at school for his session today while I was there. They have been going up to four times a week to try and help them. Today they came back to the house and Charlie has been working all day! Exactly what he needed, and he will be back at school Monday. He didn’t “win” by being sent home today, but I absolutely did in terms of therapists on our team. They’ve been invaluable through situations like this. I guess I get so frustrated with schools and day cares because I’ve seen people who REALLY know what they’re doing in this field. Therefore, dealing with anyone less trained can be infuriating. I suppose there are worse problems to have.

On the plus side, he did great at home today. He’s using his words to request all kinds of things: outside, milk, more milk, crackers, and even his bedroom. Today is also the two year anniversary of the first time he told me he loved me. You know what? I love him more everyday. I’m proud of you my sweet bear. You’ll be alright…Mommy will make sure of that!

Come to my window…

Written By: teamcharliebear - Jul• 23•14

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“I would dial the numbers just to listen to your breath. I would stand inside my hell and hold the hand of death. You don’t know how far I’d go to ease this precious ache. You don’t know how much I’d give, or how much I can take. Just to reach you….”

These words echo in my head. I’m living a life of eternal epiphanies thanks to my son. At least that’s how it feels. Since the day I woke up and started attacking this diagnosis it’s been a whirlwind of realizations.

The day I “accepted” autism as our reality.
The day I decided I needed to learn about it and do something.
The day we found help and direction.
That one day, two years ago, that this Melissa Etheridge song took on new meaning to me.

I was driving him to camp and listening to my iPod. He was going to camp because we were afraid his recent hospital stay had regressed what little progress we were beginning to make at our therapy center. It had taken two years after his diagnosis to even get treatment, and he was almost out of reach. So withdrawn. This camp had to work. Something had to…

I’ve always been a fan of sister Etheridge, but that day it was like hearing the lyrics for the first time. They meant something completely different now. I looked back at the big baby blues in my rear view mirror. I could see he was smiling as the light danced across his eyes from the summer sun. “They look like pools” I thought to myself.
“I love you, Charlie….” I always waited just in case, but he didn’t respond. “I know you love me too, baby. You’ll tell me when you’re ready.” …. I hope.

“Keeping my eyes open, I cannot afford to sleep. Giving away promises I know that I can’t keep. Nothing fills the blackness that has seeped into my chest. I need you, in my blood, I am forsaking all the rest. Just to reach you…”

Somewhere inside myself, I made a silent promise. I will do whatever it takes to fix this. Even if I can’t cure it, I will make it better. Somehow. I didn’t even realize it then, but I waged war. Against everything! Insurance, disability, autism! I would fight it all until we were the last ones standing. Something will make this better. Something has to.

Though our current state of insurance is up in the air, we won round three in that and the disability departments. He was in all kinds of therapy and has been to three summer camps in a row. He always makes great progress at camp, but will it be enough? Am I doing enough? What about seizures that can be undetected to the naked eye, and all the stuff you read on food allergies compounding symptoms? Am I making him worse? Could eliminating some of the symptoms that complicate his life really be possible? You always hear about the window. The early intervention window of opportunity to reach your child, but had we missed it completely? I gotta sledgehammer somewhere…will THAT work? I’ll make one damn it! I had a lot of questions, but never the insurance to look into them. That changed this past year and we went to both a neurologist and an allergist.

The neuro decided not to do an EEG because he didn’t suspect he was having them. It would be “unnecessary torture”. He just put him on a medicine to see how he reacted. Things have not improved.
The allergist was just yesterday. He didn’t test him. He gave me the blankest stare I’ve ever seen. He paused and asked me, why I was really there.
“Why? Because my child has nonverbal ASD and can’t tell me what he feels. I don’t know if he is allergic to anything, and what about food allergies? He has a poor diet, and no, I’ve never noticed a reaction to food or anything, but I just want to know. If there’s something I can improve here…ya know? I am not looking for a magic fix but something has to make it better, right?”
I couldn’t believe I had just said that. I know how I must sound, I realized it right then. Suddenly, I wasn’t in that office with a picturesque window overlooking a garden. I was in that cold white room with that doctor five years ago. I braced myself, I knew what the sad look in his eyes meant. He paused a moment and said, “I can’t give you what you’re looking for. This isn’t an allergic reaction. If he had food allergies you would know it by now. I. Can’t. Fix. This.” I smiled and said “thank you for your time” and began packing his backpack.
I didn’t talk much on the way home. Thankfully, William was driving because my mind was anywhere but the road. “I’m sorry” I finally mustered. “I’m sorry for putting both of you through this today. I promise, no more unnecessary doctor appts from now on.” He assured me I was doing what I needed to do as a mom, and I had no reason to be sorry for anything. He said we all needed to be there to hear it today…I needed to get to the conclusion that I was doing everything I could. Still doesn’t mean I can “fix it”, and it’s ok. We would get through it…together. I honestly didn’t know I was still trying to cure it. I guess I was though. If I wasn’t really looking for a magic spell to change this then hearing I can’t wouldn’t destroy me. Would it?
Autism acceptance. I reckon I’m still a work in progress in that department myself. My acceptance comes and goes where ASD is concerned. I accept that Charlie is my son, and I will spend the rest of my life making sure he is as “ok” as possible. I will love him. That’s all I can do…so it seems.

“I don’t care what they think. I don’t care what they say. What do they know about this love anyway?”