Archive | February, 2013

Financial woes.

27 Feb

I’m kind of freaking out. I’ll be done with school this summer and I have quite a bit of student loan debt. I’ll have to start paying it back six months after I’m done, and I am freaking out. Seriously. Here are some reasons for my current state of mind-
– Lennon has not been diagnosed yet and I have no idea how much it’s going to cost.
– My fiancé works and does ok, you could say we are “middle class” but he also has quite a bit of student loans.
– So after Lennon gets diagnosed, I know there will be extra therapies beyond going to school we will be going to. I have no idea how much these will cost or how often we will be going, but what does that mean for me as far as finding employment? I’m assuming we’ll have to go to these during the week, so how do you maintain a good standing at work and go to therapies?
– I have no idea where Lennon will go to daycare because he only goes to school half days, four days a week. There aren’t any daycare centers around here I would even consider, well, there is one but it has a crazy huge wait list I mean, one so long it’s pretty ridiculous. I am afraid of Lennon being away from me for an entire day. How will he handle this? I don’t even want to think about it.
– To explain my situation a little further well, I began my journey with school and loans and whatnot before I got pregnant. I’m 25 now and when I got pregnant with Lennon I was 21 and I had just started in on a new program/degree path at school. If I would have known then what I know now, well, I probably would have dropped out to keep my amount if debt low so I could have stayed home with Lennon and then I wouldn’t have to worry about what I have worry about now. I mean really, stay in school kids! It’s just my situation that’s a little different and sometimes I wish I wouldn’t have ever paid soo much money for school. Oh well. Woulda coulda shoulda.

Can anyone help me out? What is your situation when it comes to balancing work and everything else? Are your children (who have autism) in school and daycare? How are they handling it?

Thanks guys (and gals)! I’m just really freaking out thinking about all this upcoming stuff… I’m not sure what to do.

I’m not sorry.

25 Feb

I really don’t feel sorry that i’ve been sad. I wont apologize for it. In the world we live in today and all of the people I have surrounding me that are supposed to support me and make me feel better that are so ill informed about autism, well, it’s no wonder that I would be scared and sad and fear it before L gets his diagnosis. So shoot me.

Do I want to feel this way? No, obviously not. I get scared reading what I read online I get angry and sad seeing the looks on my families faces when they think they are telling me something “useful” to help me understand what might happen in the future. I have the wall of doubt and misinformation to break through before I come out on the other side and see all the hope there is to see. I feel like I am being judged for telling MY STORY like it is, and that most of what is out there right now is negative. Negativity about autism is everywhere. Those of us that are asking all of the questions and trying to feel everything we want to feel instead of becoming these “warriors” well, we are facing a tough fight. 

A fight that actually begins with complete acceptance, which sounds weird but its true. I haven’t completed that step in my journey yet, I am still full of fear and a lot of sadness. Sadness that is caused mostly by what’s going on in my brain though, its not sadness because of my son, although, I do worry about things like the way people treat him or will treat him and stuff I can’t possibly control. Anyways, I feel like I am still taking baby steps in my journey through this huge wall of fear that the media puts out there and that I manifest in my irrational mind.

I’ve been fed this fear and fed this fear and now I am supposed to unthink it all. Fear that was fed to me even before I got pregnant. The reason I started this blog was to be blatantly honest about my feelings and to work through this fear and come out of it with hope. I love my son so much that words to describe fail me, but because of that love, I fear the world he lives in and what it will do to him because he might not always “fit in”. That is my biggest fear, I just want him to be happy. That is what I hope for him, all of the happiness in the world. 

However I feel that I am standing in the way, with my fear, my depression, my anxiety and just all of it. All of it. 

I would like to ask now, if you are reading this and you are further along in your journey with autism and you are offended by anything I say, well, try not to be. I am just working through my fear and my feelings. I am sure from the get go, when you started realizing you might be headed for diagnosis or just received your child’s diagnosis, that you were fearful too. If you feel you can help, then please, do so. If you feel I am wrong, then tell me but please, be constructive because I would really appreciate it. Ok. Thank you. 

Trying to re-wire my brain.

21 Feb

I’ve heard and read so many times lately, that saying, the one that goes- “people who have autism use a different operating system” or maybe its something like, “their brains are just wired differently”. You know what I know for sure now? I am the one who needs to operate in a different way, I need to re-wire MY brain.

So I am going to admit something that quite a few people can identify with. When I was in high school where I was first exposed to kids that were in the special needs classes well, I never really sought interaction with them. I just thought that they could probably gain more from friendships from one another and visa versa. I know, this sounds horrible right? Honestly though, I fault the adults in my life and the school system, well, probably just society in general. Why aren’t we taking classes on acceptance or discussing special needs in health classes starting when we are young enough to attend school? Why aren’t our teachers trying to spread awareness? I’m starting to get nervous like this is coming out all wrong, but all I am trying to say is I never understood the special needs kids that went to my school because it was never really explained to me, and at my school, the classes were separated. Maybe if I had been more aware and if it was an open discussion I had with my parents or a discussion the schools set up to spread awareness well, maybe then I would have paid attention. Maybe then I would have thought of things a little differently. 

I guess what I’m saying is that I feel bad, I feel like I was missing out. Also, I think that this is one of the biggest fears I have for my son, it involves other people and how they will interact with him. Then I think, well I can kind of understand where they are coming from because its not something that a lot of people are concerned about or think about, and that’s the problem. People immediately get uncomfortable about things they don’t understand. I am really hoping that autism becomes something as talked about as dyslexia or ADHD. I feel like people just don’t really understand it, and that is dangerous. I mean very dangerous, I could not believe what I was hearing the first time I heard autism was to blame for the Newtown shooting. That was beyond horrible.

So I guess what i’m saying is, i’m still trying to figure out how to view this upcoming diagnosis. This is only because there seems to be two separate dialogues when it comes to how we should view autism. One side views acceptance while the other seeks a cure. One side sees the differences autism brings as beautiful and something to be celebrated while the other side sees something “wrong” that needs to be “fixed”. 

Someone close to me even bought me every single Jenny McCarthy book when we first suspected L could have autism. Yeah. You know what that will do to a person?!

All I know is, autism can’t be “bad” because my son is not “bad”. He is beautiful, he is un-apologetically himself. He sees the world as a wonderful and interesting place, hell, I wish I could be like that! How could autism be bad? Sure there might be challenges, but are those really challenges or are those behaviors we see to be challenges just because they differ from what society thinks is “normal”? The way society thinks one should behave? I wont lie. Dealing with the general public has been way harder than some say “dealing” with autism is. Sure L has freak outs and what not here and there. I’ll take that over weird stares any day. If the general public thought differently, would I really worry about people coming up to us out in public or them feeling generally awkward around my son because they really can’t place what’s going on with him? I struggle with this because I want everyone to see and know how great he is, I don’t want them to only notice his “differences”. 

So just some thoughts. As always I would love other peoples opinions on this and how you deal with the general public when it comes to their attitudes towards your beautiful children. Are you blunt? Are you understanding? Do you explain what autism is if they don’t know? Just wondering, sometimes I just don’t know how to deal. I just want to yell at the top of my lungs when I get “those stares” that my son is great and you should all think he’s great too! I’m pretty sure that would startle people though, and I guess i’m supposed to guard their feelings when they never care about mine.

Regrets.

16 Feb

I probably shouldn’t ever post anything late at night. After midnight, this girl is not posting anything, its like a gremlins thing, or not. Actually its nothing like gremlins. I just like gremlins. Ok…

Well I seem to regret about half of the things I post, I think its because this is really my only outlet, whoever is reading my blog well, they know a lot more about me than pretty much anyone else. I have some really really scary and sad thoughts and I guess that’s why I started blogging, because I thought if I got it out on here then maybe I wouldn’t be alone with these thoughts. Like I said before, I’m hoping awhile from now, and who knows how long it will be, that i’ll feel better. That L will have a mom that is all there or maybe that’s hoping for too much, maybe I’ll be more there than I am now. Anyway, I am completely open to any kind of advice anyone wants to give me. I would love to hear your stories especially if you have dealt with an autism diagnoses (if your child has been diagnosed with autism) or what led up to the autism diagnoses for your child. What process did you go though? How did you feel? How did you deal with your feelings? I would appreciate it so much. Seriously guys.

My email address is elehma01@baker.edu (hopefully its not a big no no to display your email address on your blog… oh well. Yay spam!)

I also want to clear something up. I am not this huge mopey creature that just blobs around and cries. Although that does sound pretty sexy… I am happy sometimes. I’m not anxious all the time. The last two years have been the most difficult of my life, but part of me is still here and that part of me still has a little bit of life left in it. I just don’t want to sound like I whine all the time, I don’t. J (my fiance) is the only person in my life that knows that much about how I feel, I don’t go to a therapist (hopefully that will change soon) and I don’t discuss my feelings with my friends or family. I have one or two times, i’ve called my mom crying, but what can they really do? So I don’t lay all of this shit on them all the time, I try to be ok. So I guess what i’m trying to say is this; this blog is my outlet and because it is my outlet, its going to sound horribly depressing sometimes. You have been warned. 

Bubble Girl.

13 Feb

I feel kind of like Jake Gyllenwhatsit in the movie Bubble Boy, only i’m a girl, I’m not allergic to anything, and this is real life (I think). Maybe that is my allergy. I’m allergic to real life.

Structure. We need structure.

10 Feb

It was actually hard for me to come back and face my blog today, I was in a painful place when I wrote the first post. Its honest though, so that’s a good thing. Not much of me is very honest anymore, I mean, the way I act around 99 percent of the population. I act weird and not myself. Plain and simple.

I was just on google looking for structured schedules to go by for L. I have no idea where to begin or what to work on sometimes, it’s completely overwhelming. On top of that its winter so most of out outdoor activities are out the window. There are certain ways to reinforce good behavior and stimulate speech in children with autism and it can be extremely overwhelming thinking about all of the ways you could be failing your child. Are you getting too much for him without him prompting you first? Are you just doing too much for him to the point that it’s hurting him and not helping him? Are you over stimulating him and confusing him because you are asking too many questions? Are you hindering his development because you aren’t asking him enough questions? Example, you two are playing with fire trucks, do you just make the noise for the fire truck and say “fire truck” or do you say “Fire truck L, what color is this? What noise does it make? Do you want to ride on the fire truck?” I mean, was that too much? What if he only took in part of that sentence and the rest of it is just jumbling things up and making him overwhelmed about the fire truck?

These are the things that go through my head every day. I get so overwhelmed that I just shut down. I get overwhelmed at the amount of learning opportunities and the amount that we might be missing out on because I might be doing the wrong things. I know I need guidance and L needs structure. We need to call the insurance company stat and get this stuff figured out. It’s ridiculous that I am dealing with this stuff on my own and with minimal knowledge on how to deal with it. On top of that you all know… my anxiety is debilitating. Hopefully in around a months time, I can take care of that. I will finally have insurance so I can take care of myself and in turn take better care of L. That needs to be a priority.

I have started in on a new activity or I guess sort of toned down obsession. I have been staying up extremely late, trolling pinterest and YouTube for sad but inspiring stories. The sadder the better. Last night I found a story about a little boy who is like 3 years old and has terminal cancer. The parents were crying and talking about trying to be strong and just holding him and doing all they can in the time they have left. I just stared, tears rolling down my face thinking about his little body and the time he will never get to spend with his parents and his siblings. It’s not fair. Maybe I just need to understand and see that there are others out there that have it way way worse. They somehow survive these situations. I don’t know if I could find the strength. My journey with L has been very complicated and I think I would feel way to guilty to survive if he wasn’t around which I hope will never happen because I would never be able to handle it. He is my reason for living and that is the absolute truth. I have no idea what I would do going through what I have been going through if he wasn’t here, I don’t know if I would be here. Thats scary to say but really, I am struggling. After watching what I watched last night I felt different this morning. Sure I was extremely tired but I realized that yes, L most likely has autism but you know what, it’s not cancer. Those poor parents have to watch their children fade away right in front of them and there is nothing they can really do to help and they are stronger than I could ever hope to be. I, however, have the opportunity to help L and change the course of his life, but this fact is also what paralyzes me. That is a huge amount of responsibility and more than a lot of other parents have to face. Sure parents have to teach their children of course they do, but not like I do. I am struggling with this. I am so lost. Hopefully the next time I talk to you (whoever you are out there) I will be able to say that I have a clear plan for L, because right now we are in limbo. He has not been diagnosed but he’s so close to being diagnosed. Its hard to say the least. Hopefully, clearer days ahead.

First post.This is the 33924892308448th time i’ve started a blog.

3 Feb

So i’ve been scouring the internet. Something I do when I know i’m finally alone, when I can finally indulge my urges to know more about what I don’t want to know. Searches. Key words- autism, depression, parenting while depressed, parenting with anxiety. I feel so completely alone, its hard to explain how alone I feel. The weird smile plastered on my face at all times, even when I talk about L (my son) and what we’re going through. So fake, its almost not fake anymore.

I feel angry, I feel angry that i’m the only one who does this, that worries until I feel like I’m dying when i’m not the only one who loves him. Why do I have to go through this so alone? Well, quite a bit of that is my fault. I completely shut people off because, wait for it, I have severe anxiety and depression. I said it all dumb like that because its like i’m the only one who knows this, even though there are people that talk to me and are around me a lot that seem to ignore this or just don’t really care. How could they care? If they did wouldn’t they come right out and say it? Erin, you don’t look good/right? Erin why don’t you ever do anything anymore or hang out with anyone ever? Why is this completely ignored when my parents especially know that i’ve been going through it for so long? I’ve completely lost myself. I don’t know who I am anymore. I don’t know why I did that. I don’t know why… I got pregnant and had L and its like I just said, shit, my life doesn’t matter anymore. I don’t know why I did that, and I am NOT blaming L for that. I am blaming myself, I just didn’t know how to handle it. Even with medication after he was born, I just wasn’t quite sure. Then, the complications, the delays, autism diagnoses looming over our heads for the past 2 years without a definite answer. No insurance so I had to drop my meds and have been free of them for about two years, which is horrible and its like finding out you have an illness and just saying, well i’m not going to treat it. That’s what I’ve done to myself. I guess mental illness is illness, but I really don’t feel like it is to be honest because I feel so ashamed of it. I feel ashamed of it because its like i’m walking around with it and no one wants to say I am or realize it. They are ignoring it just like I try to on a daily basis, so I guess, who can blame them? Then I sit there, on the couch, on the verge of tears every 30 minutes because I feel like or I know i’m failing him. I feel like a horrible mother.

I have so much anxiety about others and about driving that we really don’t go that many places, unless J is home then he’ll drive. Even then its hard because on his days off he doesn’t want to to as much as I want to do. Add onto these things that I feel really horrible about myself and i’m afraid of running into people, I worry an extreme amount about what people think, its not right. It’s completely crazy. Then I feel selfish that I feel this way and that its holding L back so I feel a million times worse. That’s what I go through all day and most of the night. I am afraid to live and I am afraid to die. Its a horrible spot to be in and I feel like a piece of shit because I am responsible for the development of my son and I feel like I am failing miserably.

I am this horrible thing. I feel like a clone of myself that just didn’t go quite right. I look in the mirror and wonder if its really me and I wake up and wonder if this is really my life. I’m not kidding. I have a serious problem with reality. I go in and out of it quite a bit and feel like i’m not really here. I feel really bad for anyone reading this actually, they are probably like shit, this girl is really messed up or they are thinking wow, grow some balls and change your life. I wish it were that easy. I am buried under years and years of fucked up thoughts, some of them even reinforced by the people who are supposed to love me. This is my cry for help, because I am crying out in every way I really know how. I don’t know how anyone will find this, as I will not advertise it. At least, not right away. I am hoping this will turn into a comeback story. A story about me turing it all around. So I have at least a tiny bit of hope, that the person I was is still in there somewhere. Its been so long though, since I have felt the least bit like myself or successful in any way. I used to paint, I used to run, I used to laugh and I used to have fun. I was crazy and I was fun to be around, I was who I wanted to be, well here and there. I miss myself. I want to be an awesome mom and not someone who feels like they are peering at their son through wax paper. Its like I can’t connect with him and this fucking thing is in between us.

Other people that I don’t know very well are starting to notice i’m not quite right, and that is my worst fear. My neighbor has a daughter that is in L’s program, she lives right across the street. Ever since I started putting L on the bus, we have bumped into each other and we have said a few times that we need to get L and her daughter together, but it never goes further than that. She has invited me to stop over and everything, but I can’t bring myself to do it, and it is one of the biggest things I have felt guilty about. I feel guilty because I should be a normal human being and just be able to go over to someones house and connect with them. Instead, i’m afraid of going over there once, completely break down in front of her about whats going on with me because its always on my mind and then she will be like wow, this girl is pathetic. I fear not having sympathy but just having all of these judgements. Or, she might want to hang out all the time, and how can I do that? How can I do that when I don’t want to leave the house and have other people see my gross face and be around my weird depressed personality? I can’t do that. I need to keep it this way. Then, I get worried the longer I put it off, the more and more she will doubt that she ever wants to hang out with me and L and it will just never happen, even when i’m better. Then I feel extremely guilty, or some kind of feeling beyond guilt that I have cost L a friend. Someone he could’ve bonded with.

Then I want to die and the cycle starts again.