Tag Archives: aspergers

Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

– 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

– His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

– I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

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So many words, but also so few

The world has gone mad.

I’ve been in a funk and haven’t written a thing in a month. A THING. In a MONTH. Not here. Nowhere. I barely post to fb or twitter anymore, and tumblr just basically irritates the crap out of me sometimes. Especially lately.

I mean what can I say? I’ve been feeling numb inside. As if everything I could write about is verboten. Which honestly, much of it has been. Much of it has been painful situations loved ones have been going through. Not me. Them. And in some way yes what they’ve been going through affects me, mainly in the way that it hurts me to watch them go through hell, it’s not MY hell. But it’s left me helpless, and numb.

I keep feeling like I have all these words inside a balloon that’s growing bigger and bigger and the balloon is inside of me and it’s making me feel like I’m going to pop any day. Only I’ve been so afraid to put them down.

I’ve seen a family member go through illness and now thankfully recover. Again, not mine to go into detail about.

My son’s paternal grandfather is going through a heavy battle with cancer. One that right now is in a very bad place. I’m still friends with my ex, we chose to be for our son, and also because we never disliked each other in the first place. Just grew apart. I’ve always stayed friends with his parents. His father is one of those men that others would refer to as “the salt of the earth”. He’s a great guy. And he is insanely close with my son, his oldest grandchild. His oldest grandson. Who is named after his father.

When son’s dad told me the news that things were worsening I cried for a couple of hours. Terrified of what would happen if he never recovered. If this was his last Christmas. We’ve chosen not to tell our son most of this. We need to keep him anxiety free as much as possible for now. Son has had his own hard time lately and I can’t, we can’t, compound it.

Last week there was a school meeting that was determining where we would go for services and academics with son, it was an insightful meeting, and afterwards while standing outside ex spoke of his dad. He looked like he was going to crumble to the ground and I just reached out and hugged him. He let me, he thanked me. He needed that from everyone right now.

I left that day feeling happy. I ran my errands. The day was good for the most part.

It was 1pm by the time I arrived home and had a chance to go online for the day.

And then I saw what I had been unaware of for hours. 20 children. Six adults. Dead. Newtown.

I saw my facebook feed and then turned on the news. I sat down and cried. And cried and cried. I didn’t know them or anyone else there. But it tore me to pieces inside. Once I saw the ages it crushed even more. 6. 7. Kindergarten and first grade. That’s what they reported at first.

I have a child that age. I couldn’t, no, I can’t, imagine. I don’t want to.

My first instinct was that I wanted to be with my kids. The school was three blocks from us, I could go get her. But I looked at the clock and saw it was an hour until school was out. And I didn’t want to panic. It wasn’t her. I couldn’t, no shouldn’t, go. I stayed put.

I don’t want to keep going on here. This isn’t my story to tell. And in some ways maybe we all need to stop talking about it unless we experienced it. So many articles have been thrown around, so many posts from everyone offering their feelings and opinions. Which is ok to some extent but some are starting to be positively ridiculous.

I hurt for these babies, for these families and this community as much as everyone else. This reached deep into my core unlike anything else that’s happened in this country the last few years. I don’t think any parent especially will feel safe for a while. We’ll always be looking over our shoulders for something to happen. We’ll be on our toes, trying to keep our kids even closer and safer than they’ve ever been before.

Then one day we’ll loosen up and let our worlds get back to normal. But normal will never happen for those families. I wish I could go there and hug each and every one of them. I really do.

I have other words to write regarding the young man who committed this atrocity, but now is not the time or space.

The only words on that subject I have to write is regarding the earlier reports about him having Aspergers and being reported as “odd”. I felt it was unfair. For a person with Aspergers is not a violent person. I know this as truth. I can’t sit here and speculate what was wrong with that boy, there could have been many different things. Or he was just a cold-blooded killer.

However, when the media started rolling with this as a supposed reason why, my blood boiled. I even took ABC news to task via twitter. Others saw what I wrote and retweeted me a bit. It was simple: This could very well put those with Aspergers in a very bad light. They were doing a very big disservice to children and adults with Aspergers. I have a son who has it, and he’s not a violent person. Granted he has some anxiety/depression issues and there have been some extreme outbursts on an infrequent basis over the years. But they occurred only at times when he was feeling picked upon too much and he felt angry and hopeless. He was always remorseful and he never hurt us. My walls generally took the brunt of it.

I took him into my arms that day when he got home and hugged him so hard he yelped. He knew why. They had heard at school and he looked at me and said that he would/could never hurt anyone. I knew this, he has the biggest heart. He smiles and laughs a lot. While his peers sometimes don’t get him, adults positively love him. He’s a sweetheart who just wants to be loved.

This is what Aspergers is like. I’ve met other kids with Aspergers and most of them are just like my kid.

So it definitely is time that we stop putting a label on people and trying to use that label as a reason why people do things like this.

Instead maybe it’s better if we open our hearts and minds a bit more and maybe reach out to someone we misunderstand. I’m sure they’re just waiting for someone to be there for them.

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Raising Charlie

I’m getting to a point where I don’t care about this place anymore. Not this world. But this blog.

The last ten days have been absolute murder. I’ve seriously been to hell and back and while in some ways it was for the best(life changes can be good despite their awful beginnings), there were others that just make me feel like I’m on a merry-go-round that just will not stop. I have serious motion sickness so this really isn’t cool anymore. Plus I’m afraid of heights.

My son is in turmoil again.It’s shown up at home, and lately at school. Emails from his teacher saying they need to talk are not good ways to start your day. She called me to say that everyone was concerned he was depressed lately. She also noted he was sick(he had a horrible cold) and please keep him home the next day . I did. And we talked a bit about what was wrong. He admitted he felt anxious. So I put him to work with me. We cleaned out his room which looked like a bomb hit it. Our cleaning out his room from one end to another seemed to ease his anxiety just a “little” bit.

However it’s been hard watching him float by each day knowing that something isn’t quite right. I can’t figure it out and he isn’t even sure what it is that has him feeling off. He just knows he’s feeling off. It kills me. It really does. Here’s this kid that I swore my life to protect and help grow from the day I knew he was coming feel so much pain, yet I feel so helpless to do what I promised him. I can’t be inside his head or his heart. In so many ways I know that I failed him as he grew up. After his father and I split I know that I hurt him. Not intentionally.

There are days still(so many years later) that I think that much of what is wrong with him is my fault. I know this is what every parent thinks when they divorce, move on, when their child goes through all of their growing pains. You take on the world when you have children. Sometimes you try to step back and let them figure things out on their own, hoping that you can catch them when they fall, when they let you know they need you. Often as they’re at the age my son is, you just sit by waiting for that signal. You hope you get there just in time. For so long people have picked on him, hit him, called him names or just plain excluded him.

There have been so many high-profile cases of bullying that resulted in suicides that it sets my hair on end. The latest is the Amanda Todd story. I cried so hard reading it last night I couldn’t stop. When you watch your own child go through hell and seem to come out of it, but still feel so alone, these stories make you feel like you aren’t quite out of the woods just yet. You hope and pray each day that you can help your child realize their worth so that this never happens. That you never have to feel the anguish her parents felt.

The bullying has stopped. For now. Thankfully. But he still doesn’t have friends. He doesn’t know how to communicate with other kids his age. With adults he’s as eloquent as could be. They love him.

I don’t know if suicide is something I need to be worried about. However, I don’t know anymore what to do with him. One day he’s smiling and laughing and describing to me something he watched or read. The next he’s so angry at me for failing him and putting a hole in my wall. Within hours of that he’s hugging me and crying telling me how much he loves me.

I know it seems like so much. It is. It makes my head and my heart spin on a daily basis. Sometimes I need to be tough on him, and when I am my heart hurts. Sometimes I know that all he needs is for me to put his arms around him and let him know “it’s ok”.

He’s not like everyone else. He feels and thinks differently. He wants to be like all the other kids his age. And sometimes he is.

Sometimes he isn’t. And that’s ok. Because if we were all alike, this world would be a very boring place.

I’m trying to sort through this the last week. My decisions and reactions may not have been the best. However I know I love this kid something fierce. I want to see him grow up to succeed, but most of all to be able to take care of himself and find his way. Maybe find someone who loves him the way I do. Maybe even more than I do, if that’s possible.

I don’t know what I want.

I just know this kid deserves more of a chance in life then what he started off with.

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It Must be Tuesday

Bah.

I promised so many wonderful things and this is all you get. If I had a proper laptop with me while in the mountains I would have published the three things I was writing, but by mid last week I decided they outlived their relevancy so I scrapped them. This left me with nothing.

Last week I was also dealing with the come down from traveling and getting my life & house back in order. I made my kids run a million errands. The heat was unbearable again so I damn near held them hostage in the house all week. My husband worked long hours and I was pissy.

To be honest I don’t remember a lot of last week. Most of our plans fell through. And I started watching the calendar with a crazy amount of glee.

The kids go back to school in a week. Yes, a week. We’re crazy here in the suburbs of Chicago. That’s ok with me, I’m done with summer and my kids are bored with me and each other. Today I considered selling them on Ebay quite a few times. The teenager was such a thrill to be around and the 6 yr old found it her duty to scream like a C horror movie actress at every and any chance she could get today. It was just plain awesome. And I even took the little monsters to the local beach(man-made pool that probably every local kid has peed in at some point this summer).

I’m supposed to be up in bed right now but that isn’t happening. I was sidetracked by “this”. I have my son’s HS registration tomorrow. Where I’m going to go in fuming because I dropped the ball and didn’t read his schedule properly when it was sent to me two months ago. Yes, so I’m going to be the asshole tomorrow. See, how was I to know(unless I dig out the long ago stuffed in a drawer course book) that they stuck my kid with ADHD & Aspergers, but who is fully functioning, in all special ed classes despite my calls and our meetings with them arranging he only be in two. Hmmm. So of COURSE I figure this out tonight and have to arrange to have the 6 yr old to hang with her friends tomorrow so I don’t drag her easily irritated self with me while I calmly(snort) discuss(steam) over this with the people at the school tomorrow. Deep breaths, Deep breaths. This is partially my fault, but honestly unless you have the course book nearby(mine was stuffed in a drawer under a million pieces of paper for three months)you could be signing off on anything.

So here we are. Tomorrow will be fun. My kid already thinks I’m a badass. Seriously, he does. He not only thinks I’m the funniest person alive(well I do have a flair for the sarcasm) but also that I’m pretty tough when I need to be. Sounds pretty good to me.

Oh, and I stopped drinking on sunday! Figured I’d give up wine for a few days. Then I started getting awful headaches the last three and decided just maybe the lack of wine was the reason. Is that not sad or what? So I gave in tonight. So yeah, it must be Tuesday. And a cat just walked in front of my monitor because he still thinks it’s ok to climb on the desk while I’m writing. He’s lucky I love him because many of these words almost turned out wrong. Nah, who am I kidding. I can type in the dark if need be.

Other notable things that happened in the last week:

  • Took my kid and her friend to the movies saturday. Brave. Kid has seen it before, didn’t flinch. A half hour until the end I had my kid in my lap screaming and her friend clinging to me for dear life. I had to laugh. During this time I check the radar on my phone because I knew a storm was coming in. I look and it was almost on top of us. We had 30 minutes left to the end, if that. I can’t drive in storms. Rain yes, storms no fucking way. So I’m texting my friend Jess to ask her if it’s coming in, and notice her texting at the same time(cue Twilight zone music). She tells me it’s getting scary out before I can ask if it is. She tells me if it starts to come down she’ll come get us(her kid is part of that us). I kind of ask if her husband can come so my car doesn’t spend the night in the parking lot of the cheap theater. Of course she says. 15 minutes later we walk out to a pitch black sky and rain/wind arriving in a fashion that calls to mind a hurricane. If you heard of the storms in Chicago saturday, yeah this was that storm. Jess and her husband showed up 10 minutes later and she drove my car & us and he drove theirs. By the time we were three blocks from home it ended. All I have to say about this is that I love having good friends out here and one who can damn near read my mind. Took me a while to meet some people who I really clicked with, and once I did I was grateful. You know who you are.
  • I won’t be a snob and say I never watch tv. Hell one of my dream jobs is to be a Tv Critic. I hate however when I pass over a new show and then one day get the dvd and discover it was one of the best shows I’ve seen in a while. The past 24 hrs I just plowed through the first season of Scandal. Soo damn good. So damn good. I honestly can’t wait until season 2 next month. And I love seeing Joshua Malina on my screen. I had a crush on him when he was on Sports Night, The American President, West Wing, and anything else Sorkin has made probably. I know Sorkin didn’t make this, but still. I have a weakness for the kind of geeky type, I have ever since high school. And Josh Malina fits that description.
  • I love Burlesque. Yes I do. And no it’s not the same as stripping so shush. I love the glamour, the comedy and how dedicated the dancers are. Most of the ladies are artists/writers/comediennes/designers. There’s no dancing around a pole. The performances are very thought out, drawn out and the art goes way back folks. And it’s made a huge comeback in the last 10 years or so. I’ve been appreciative of it since I was a teen. Lately, just plain obsessed. We haven’t been to a show since Christmas time. And we’re going to one in late August because two local artists/dancers who I’ve come to admire, who’ve inspired me to want to learn the art, are performing the same night. Can I say the minute my babysitter said yes to working that night I did a happy dance? I did. I cannot wait. And who knows. Maybe this winter I’ll take my lame ass and sign up for that class with Michelle L’Amour’s studio like I keep threatening to do.

;

Ok, my cat won’t stay away from my screen. He’s waiting for me to go to bed. And I think I should.

Goodnight.

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