Sometimes, I want a way off this train....

Who blogs at 1 am? Oh, that would be me. What else does one do this late/early? I can't sleep. My child graciously gifted me with a cold before leaving me terrified while he tromps around camp. SS is actually sound asleep for the moment, which is rare at this time of night. I am left alone with my thoughts. I don't know how profound my alone thoughts are, but they are mine.

I guess I have a lot on my mind, Being sick does not help with going to sleep, but it is not the only thing running around the track. I find myself faced with this feeling like I have done something wrong. As a parent of two children with autism, my life moves at super speed. I feel like I never stop, never eat, never sleep, and never breathe. It is always just GO! There is no slow down button in a life such as mine. It is a life that races from one day to the next, often blurring together. As the time disappears without me so much as catching a glance of it, so goes much of my social interaction. This goes for everyone in my life that does not live in my home, but I believe it offends my family.

I cannot do anything to change it. I make an effort to keep in touch with my mother, but even that is strained lately. I am not sure how it got that way, but it feels like my fault. I feel like somehow I have upset her by not being there for her as I should be. I think it bothers me more than it really should, and I believe I know why. My mother is the only other solid thing in my life, aside from Puck and the kids. Yes, there are some strained moments regarding my kids, but that is really just living with autism versus not living with it. It's me being frustrated because I think she doesn't get it, and her frustrated because she believes she does. Feeling like I have done wrong by her somehow is absolutely killing me. I miss her, but more than that, I need her. I don't think I tell her that enough.

Last night, I had something terrifying happen to me. Puck couldn't be reached and I was alone. I had no vehicle and both kids. In my terror, I called my mother. She didn't pick up. It was late, so I let it go, figuring she had gone to bed. However, she hasn't called back at all. I called at after 10 pm. Maybe it doesn't register in her mind that I called that late. Maybe I am over reacting or being over sensitive, but if I received a call that late and missed it, I would return it, just because it was so late and I would be worried. I know that she mentioned not having a charger, but I have sent her emails as well, which I know she has access to. I want to tell myself to get over it. Unfortunately, I really can't. Somehow, I have pushed my own mother away and now, other than my own little family, I am all alone.

There is nobody to call in an emergency. Nobody is there when I need to talk or just want to hear her voice. I am not sure how I did this, but I regret every moment of it. We talk about our children having social issues and how they may feel out of sync with the world or like they don't have a friend, but last night was a reality check for me. We do it to ourselves too, or rather, our lives do. They aren't easy lives. I love my life. Sometimes, I wish it would slow down, even for a day, but inevitably, it's not likely. I love my little family. I enjoy spending time with them. They understand me. They understand us. It is, however, an undeniable fact that I miss a life outside of autism. I miss my mother.

I wish there was a way to reverse time and try and do it differently. I am not sure that is even possible, but if I could pinpoint the moment where she made the decision to step away, I would try to alter that. It is never a good moment to feel so separate from your mother, but for me, this is the worst time of year for that. I genuinely hope that whatever has been done, can be undone. A life filled with autism related things isn't the most glamorous. It is all consuming sometimes. I wish that I could explain that. I have other family members that I have not spoken to, except for holidays, in 2 years. Family that I LOVE! I want to call them and ask how their lives are, but I feel so terrible for not doing so earlier. By the time I work up the courage to do it, some other autism issue or crisis invades and the thought is swept away in the tide, tears, and fight.

I go to battle for my children all the time. I always will fight for them, even against what seem like insurmountable odds. I am their advocate. I am their mother and it is my job. But, when do I fight for myself. Fight for a little freedom from what often feels like chains. Sometimes, I want a way off this train. In doing everything I was supposed to, I may have lost some of the people who mean the world to me. Feeling alone in a world that I don't control anymore is a terrible feeling. I need my mom. I need my various aunts. I would say that I need my friends, but they are spread all over the country, and I have not had time to make new ones in the 4 years that I have been here.

I know who I am because I fought so hard to be that person, but there are parts of that person that I am not fond of. I am hurting. I want very much to be the daughter, grand daughter, niece, cousin, and sister that my head and heart says I should be, but I have to be a mother first. I feel like I am paying a price for something I don't have control over. We moved here for the support system, yet in the time we have been here, the support system has fallen apart. My little family seems to be all that is left. There is nobody to turn to, no help, no quarter, just us. We may be enough to keep this machine running, but if I have nobody outside of my little family to lean on, then who keeps me running? It's not fair to ask Puck to shoulder all my pain. I feel alone; very VERY alone.

The email war that will end in a full blown assault of paper...

The original email:

 

Good morning Principal ______.  I'm writing to address the fact that my daughter has been bullied nonstop for two years now, and nothing is being done about it.  I do not like using the word "bullied" because I know the negative connotations attached to it, yet I can't seem to find another word to use.  Not anymore.  I've already spent two years using words that were not "bullied" in writing and speaking to teachers, nurses, secretaries, the bus driver, and the bus garage.  I'm out of nicer words.  To her credit, the bus driver, a Miss Tina as SS calls her, has done everything in her power to help my daughter and to keep her away from the "mean kids" on the bus.  While I will be addressing issues that my daughter has had on the bus, since this is where most of the bullying has occurred, I will in NO WAY indicate that Miss Tina is not doing her job to the best of her abilities with the materials provided.

Let's start with the fact that my daughter is on the autism spectrum and has a hard time making and keeping friends.  She spends most of her time talking to stuffed animals, bugs, flowers, grass, sticks, trees, etc.  These are her "friends".  She calls other children her "friends" but when pressed, is unable to name them or say what they look like.  We're having a VERY hard time identifying who is hurting her because of this.  SS has a lot of love inside of her to give and unfortunately, she gives it all to plants and animals because they aren't mean to her.

Last year we had several problems with a child named Zachary.  SS was coming home from school every day with bruises because he was pushing her down on the playground when no one was looking.  When I called the school about it, all I was told was that they "didn't know about that".  This actually has continued into this year, but her main problem currently, on the playground anyway, is a child named Richard.  We have told her several times to stay away from him but he pretends to be her friend and she falls for it every time because she has so few friends.  We even ended up having to ask the teacher to keep them apart permanantly because he was hurting her physically and emotionally.  Somehow he still managed to hurt her, for a total of eight months before she snapped and beat him up.  Who got in trouble?  She did.  Most recently it's been a boy named D.J. who feels the need to wait until she's playing quietly by herself in the grass with her "friends" the flowers before running in and tearing all the grass and flowers up, essentially killing her "friends".  I'm not sure how long this went on because the first I heard of him was when she hit him with a stick.  Now we all know that she shouldn't have done that, but really, how much torture do you think an eight year old girl can take before she snaps?  Especially one with special needs?  I've asked her many times why she doesn't just tell the teacher, and she tells me that when she tries to all the bullies' friends gang up on her and won't let her through.  The main problem here, as I see it, is that SS has been picked on and bullied and ostracized for two years EVERY SINGLE SCHOOL DAY and when she finally snaps, SHE gets in trouble because she is unable to indicate WHY she did what she did.  Well I'm here to tell you why.  I'm also here to tell you that if I have to, I will come up to the school for every single one of her breaks and keep an eye on her, since no one else seems to be able to, and I think two years is long enough to hope for some change.

Moving on to the issues on the bus, which surprisingly are the bigger problems, but like I said, Miss Tina has done everything in her power to fix these problems.  We have Evan, who has been mean to SS since she started riding the bus.  He's rude to her, he says horrible things, he pushes her and pinches her and pokes her with a pencil.  Tina has them separarted but he still somehow manages to make her cry at least once a month.  A little while ago we had a problem with SS sitting with some of the older kids, who kept asking her questions like "what's under you underwear?" and laughing when she couldn't answer.  These kids told her that if she didn't stop talking they would "kill her parents and her brother".  She was hysterical that day.  As far as I know, Tina and the staff of the bus garage took care of that.

This brings us to this past Friday.  SS got off the bus and was absolutely inconsolable.  When asked for details she kept saying that it was "the worst day" and that someone on the bus had punched her.  She had a fat lip.  Again we have no idea who, only that it was "a boy and a girl".  I will follow with an essay of sorts that SS wrote for us because she was unable to verbalize what had happened to her that day:

  "I went to breakfast.  Then, I went to the playground.  Someone threw bark at me!  When I went to stretch D.J. pushed me, and I fell.  I was good until recess.  I fell.  My friends didn't let my other friend/sister play airplane.  I took off my nail at math.  And it bled.  On the way to lunch, I fell down.  My body felt squeezy but I wasn't hurt.  So, when it was the end of recess, I got splashed by water, because the sink sprayed water too far.  When I went to the cafeteria, they served strawberry milk.  Everything was good, until I went in the bus line.  I found a tiny crystal, but someone pushed me and made me drop it.  I felt sorry for the crystal, and then it reminded me of all the bad things that happened.  I started to cry.  Miss Tina felt sorry for me.  When I got on the bus a girl said to a boy 'How do we make her stop crying'.  The boy said 'I don't know, maybe this will work', and squirted me with water.  Then, I cried more.  Then, the girl said 'Maybe I can punch her', and then she punched me.  Finally, that's when I got home"

This kind of thing has been happening for two years.  I am reaching the end of my capacity to deal with the school on these issues, as I constantly feel like I am not being heard at all.  At this point, I'm feeling like I have to ride the bus with her to and from school, and sit on the playground with her, just so she can feel safe.  That is NOT okay.  Children are supposed to enjoy school.  It's supposed to be a safe place where they can make friends and have fun.  My daughter is getting none of that, and she is falling through the cracks, and the worst part is that she is getting in trouble for hurting the kids that have hurt her for YEARS before she did anything in retaliation.  I do not want to have to pull her out of public school as we have already had to do that with JJ, but if that's what it takes to keep my daughter safe, rest assured that I will do so.  And I will be sure to let the school board know WHY I did that, because how many other kids is this happening to?  How many others are coming home with unexplained bruises?  How many can't sleep at night because they know they're going to be tortured in the morning?  You say you have a "strict bullying policy", but the actual bullies are STILL getting away with it every single day, while the ones who finally fight back are being labeled as the "bullies".  I implore you, do something about it.  PLEASE.  Because these are the kids that are going to lose it.  The ones who are ignored.  The ones who are "dramatic".  The ones who can't even tell a teacher because the other kids gang up on them, or because they know that if they DO manage to tell, the other kids will say they're lying, and they'll get it even worse next recess.  The ones who live in fear are the ones that feel the need to bring a weapon to school to protect themselves.  I can tell you that we don't have any of those in our house, but I can't tell you that NOBODY does.  Do you want to take that risk?  Please, Principal Paturel, protect these children.  PLEASE.

His paltry (and dismissive) reply:

 

Thank you for taking the time to write me your email message.  It means a lot to me that you would take the time to share with me at length your feelings.  

 

I agree with you in full that we want our campus to be free of intimidation, harassment and bullying for ALL students.  I make this issue my most important concern. 

 

I will certainly address this issue.  I will bring this to the attention of the teacher as well as the bus department. 

 

 

Please let me know if there are further concerns.

 

Thankyou,

 

Her retort: (sarcasm is intended)

 Principal _______,
   I appreciate you taking the time out of your busy day to write a note back to me.  However, and with all due respect, the teacher and the bus garage already know about this.  We have talked to them both several times. The teacher does her best to keep SS separated from Richard and the bus garage never called us with a follow-up after the incident where a girl told SS that she was going to "kill both your parents and your brother so you're all alone".  I'm not sure if they just couldn't distinguish on their cameras who it was so nothing ever happened, or if they just didn't want to release the name of the child.  I am not worried about the names of the children involved in beating my child to an emotional pulp.  I have no desire to take revenge on children.  What I want is for my daughter to be watched more carefully.  I don't want her interrogated because she's not going to be able to answer your questions no matter what.  She doesn't have that capability, and all that's going to do is cause her to be an emotional mess when she gets home.  I just want her kept safe.  I have to fight with her every morning to go to school.  She has night terrors until almost two o'clock in the morning every night.  No child should have to go through any of that as a result of going to school! 
  As for what I know needs to happen, she needs to have a full, formal IEP done.  The buses need better cameras or maybe the aide could be sitting in the back instead of in the front.  For a while we had SS sitting up front so no one could bother her, but again, that just makes her feel like she's being punished for what someone else did.  You can also consider this a formal request for an IEP.  Yes, she does not meet the educational gap, but it is apparent to anyone with any training that she is emotionally and socially about four years younger than her actual age.
  As principal of her school, I appreciate your willingness to take an active hand in this.  It's nice to know that kids can get one on one help when they need it and that, as they used to tell us in grade school, her principal really is her "pal".  I look forward to working with you towards resolving this issue and helping my daughter achieve a healthy emotional state.
   Thank you,

 

What the BEEP is wrong with society these days!

What the HELL is wrong with society today!?! What happened to adults that took responsibility? Where are the children that have been taught that standing by and doing nothing is the same as participating? There is this huge push in the media for anti-bullying, but it seems to me that it has gotten WORSE! Are these parents out there showing their kids the programs without taking the time AS PARENTS to explain why we don't do it or the importance of the program? Has anyone done a recent study on whether most children these days even recognize morality? Most kids know right and wrong, but do they know WHY it is right or wrong? I am so tired of parents sitting on their asses, never teaching their children and expecting the school to teach them everything. Then, they have the nerve to blame the school for their child's misbehavior. BITCH, please!

My daughter came home today in full blown hysterics. I saw it the moment she stepped off the bus. Snot all over the place and sobbing. The bus driver didn't ask or stop her. The bus driver just let her walk on by. She was not quietly crying or looking sad. She was freaking broken. I put down everything I had in my hands in the middle of the street and got down to her level and pulled her in. The other parents were looking at me like I was the alien here, but come on! I don't care if your kid is neurotypical or not. If they are crying like that, you get down in it. The other kids getting off the bus were not at all surprised to see her crying. They KNEW she had been, you could see it.

Now, my temper is something I work very hard to keep in check, but with all of this going on, I am losing it rapidly. So, in order to ground myself, I pull my child tighter. I ask her what happened. She tells me that kids were mean to her at school today and on the bus. One kid even hit her. Now, my daughter has SPD and I know that sometimes what she physically feels isn't always how it went, but I try to give her the benefit of the doubt. Turns out, it's a damn good thing I do. I pulled her away from me, so as to hear a bit better what had happened. (It is really hard to hear through a snot covered, soaked from sobbing, t-shirt.) I look at her. She has a swollen lip. OK! NO! I admit, it isn't bleeding or that swollen, but it is swollen. Temper starts flaring again.

During this whole exchange, not ONE parent, or child for that matter, has even asked what happened or why she is crying. We meet at this bus stop every day. We have for two years. There are about ten of us. We know the kids, talk to each other, and share basic social things. So, here is my daughter, barely able to speak a sentence she is so upset, and they all walk by. You know what, FUCK YOU! The only name my daughter COULD give me was not unexpected. The only other child on the bus with a disability. The two are constantly at odds. Unfortunately, his mother also has a mental disability, so it makes addressing it very hard, though it has been addressed before.

I finally got her home, gave her her favorite fruit, and suspended the rules for the day. I am alone again this evening, due to Puck having left for work before I got back from the bus stop and I am not going to push her. As a parent of ASD kids, you just have to know when the battle is lost. For me, the battle over chores and tv was lost the minute she got off that bus.

I could call the school. I could call the bus garage. I could e-mail her teacher. Have I? No. EVERY TIME I do, they tell me it will be handled. That there is a no tolerance policy in place. Nothing is ever done and my daughter continues to pay the price. I will be calling about the physical injury, but don't expect anything to come of it. I won't let that happen anymore. Next year, my daughter will join the ranks of my son, at home with school. This was it for me!

It still begs the question, what are parents teaching their kids these days? I used to get in trouble for saying I hate people, but sometimes, I really really do! How can you not? Most of society have abandoned their kids to video games and let the schools raise them. I am proud to say that I am not one of those parents. I will never abandon my child. I will always do the right thing over the easy thing! ALWAYS! I will always strive to teach them that wrong is wrong. They will know that doing nothing when others are being bullied or hurt, is the same as doing it themselves. The children on the wrong side of the bullying crowd still crave friendship and still need people to lean on. Unfortunately, a lot of them don't have that in their parents. It's not alright! At least once a week, we still do family night. We suspend all activities, turn down all invites, and spend time as a family. This should be happening in more families. Society isn't going to raise our kids, and they sure as HELL aren't going to teach them morality. That is our job as parents. While the anti-bullying campaign is a wonderful idea, it doesn't accomplish anything if parents aren't educating and helping their children, and quite often themselves, as well.