Monday, March 17, 2014

Some days...

Some days I truly just want to smack him. I mean seriously? It's the same old song and dance nearly every day. I try so hard to be patient and pray that some day he will actually "get" his children. I see a glimmer of hope here or there. But for the most part, it's just frustration and sadness for me. I want to believe that some day it will all change. One day he will figure it out. But sadly, days like this make me think that is never going to happen. I mean, come on, our kids are 7 years old now, and he still doesn't get it. Is he ever going to? Truly, truly breaks my heart.

One of the biggest problems we have is how he speaks in front of the boys. Ok, let me give you an example. He tells them to do something (or more often NOT to do something) and they don't listen. He continues whatever he is doing (usually his iPad or phone), while continuing to tell them from across the room what to do. Doesn't matter how many times or in how many different ways I have explained to him that you have to walk over to them and usually touch their shoulder or something, he still continues to do it his way. So then they don't listen, he gets mad, throws a fit and then says something like, "Fine, you never listen to me anyway." or "Why should I even bother, you don't listen to me anyway." Well, if you constantly said that to me I wouldn't listen either! He is just reinforcing their behavior in so many ways. But he doesn't want any advice from me. As a matter of fact, often it feels he is hell bent on doing just the opposite of whatever I say will work. I'm sorry, but I can only take so much. I don't have the energy any longer to try to tip toe around his needs constantly. My children have enough special needs as it is, and let me tell you, basically none of my needs are being met. I have to start truly taking care of myself so that I can do what is needed around here. Because right now, the constant roller coaster with him is making me sick...literally. Tonight I am so sick at my stomach I can hardly take it. I can't continue to get physically ill because of his attitude. It's just not worth it. I can't control anything except my own thoughts. And try as I may, even controlling those on days like today is tough. But I have to continue to get better at it and keep growing. Because I see what a difference something as little as an attitude can effect my children's behavior. So for now I will just continue to pray. A lot.


I'm a little frustrated at the moment. For many reasons actually. 

One of the things that has really been bothering me lately is that people constantly point to the fact that my kids are verbal, so therefore that should mean in their eyes, there is no way my children can have Autism. This truly annoys me on so very many levels. 

Some days I truly think it is harder being the parent of a verbal child with Autism than having a non-verbal one. No, I am not trying to debate who's life is harder, because in all honesty I can't even begin to imagine parenting a non-verbal child. I truly admire the women I know with non-verbal kiddos...they always amaze me.

When I state the above, I mean with regards to dealing with things like the school, some doctors (have thankfully learned not all of them believe all Autistic people are non-verbal), and others we deal with on a day in and day out basis with regards to learning and behavior.

You see, to me, there is a HUGE difference between being verbal and being able to communicate. HUGE. Now just to figure out how to get those who consistently deal with my children on a near daily basis to see that.

Thursday, March 13, 2014

How did we get here?

It truly amazes me what the last two years have brought my way. Sometimes I wonder if the years before that were all just a big dream. It has been such an amazing, strange journey. I still have no idea where to even begin even writing it all down here, but I know I need to start somewhere. I thought I was going to start with the boys, but typing just now, I think I will start with me. I don't do that very often, today is a good day to!

Last Fall I finally decided it was time to find a doctor here in the new place we moved to. It had been over a year and I had some concerns. For many, many, many years I have asked my doctors why I was so incredibly tired. Why could I sleep 9 hours and wake up feeling like I hadn't slept at all. I could sleep almost anywhere at any time and it drove me nuts. I had been like this since I was a teenager. When I was a teenager I was always told it was because I was a teenager, staying up all night, sleeping all day.

When I was in college, same thing. But the thing is, I was married when I was in undergrad so it wasn't like I was out partying like the rest of the college crowd. I actually waited a year after high school before starting college, so I wasn't a typical freshman to begin with.

When I moved to Dallas to go to grad school, it was because I worked full-time, went to school full-time, and was newly divorced (new found freedom and all you know).

After I got married again and had kids, it was because of the obvious, I had small children and a husband that traveled all the time. I remember telling my doctor that if I could just get a good night's sleep I would be ok. But even after being on Lunesta for an entire year I still didn't feel any better.

I had kind of given up to be honest. When we moved here I had gone to the GYN and had told him I thought it was my hormones and once again a full blood panel was ordered to check hormones, thyroid and all the usual suspects when you complain of being tired all the time. So a year went by and I had really just kind of gave up.

Over the summer it got worse and worse. It was to a point that I literally could not stay awake. I got to a point I thought I was severely depressed or something but didn't know what to do. But the thing about it is I didn't want to be in a bed sleeping. I wanted to be up doing things with my kids and enjoying life. So I felt stuck.

After school started in the fall I thought things would get better. I would have a few hours each day to get things done and all would be well with the world again. It was just the summer blues and they would be gone soon. Nope, I was so wrong. I would drop the boys off at school and go home and start to get ready for the day and then it was just an overwhelming sensation of not being able to stay awake. I would sit down for a few minutes and the next thing I knew it was two hours later. I hated it. HATED it. It was driving me crazy. So I finally broke down and found a doctor to go and see. Which, funny enough, is probably a funny story for another post how that all came about.

I remember going in and her asking me a lot of questions. I originally went in thinking I wanted help with the fact I have Meniere's Disease and I was having severe vertigo attacks every other week that were taking me down for two straight days.

The heart stopping question for me was when she asked if I had ever fallen asleep at the wheel. I didn't want to answer her. I almost told her no, but I seriously cannot lie. I am terrible at it and it doesn't matter to whom I am speaking, it is just not in my nature. Fatal flaw I guess for me. But anyway, I digress. I answered her honestly. Years ago I had fallen asleep a few times, but had learned what the feeling preceding it was and would always have gum, ice water, a cold drink handy or pull over. So although I haven't done that in many, many years, I had and probably would have if I were one to push myself in some circumstances. But the thought of hurting someone else while I was driving always terrifies me. And now that I have kiddos I drive around there was no way I would ever risk injuring them.

I will never forget her looking at me, this woman who had only met me 30 minutes prior, and said I had Narcolepsy. What? I couldn't wrap my head around it. I honestly don't think I believed her. We all kind of have an idea in our heads of what Narcolepsy is, someone randomly falling asleep in their food the way TV portrays it in shows. I went home, started to read about it and oh my gosh. So much of my life now made so much sense. I think I kind of was in shock.

I went and filled the medication she prescribed and was sitting in line to pick my kids up from school. I thought, hmm, I'll try half of one of these pills and see what happens. I can't even begin to describe what happened after 20 minutes. It was like someone opened a roller shade in my head. I could almost literally feel the blind lifting. My thoughts became so clear and I actually felt awake. It was the strangest feeling I had experienced. And of course I immediately thought there was no way this was just because of one simple half a pill. But the next day, same exact thing. I was getting more done in minutes than I had all day some days before. I really could not believe how I felt. It was amazing and terrifying all at the same time. Amazing because I wanted to feel that good all the time. Terrifying because I couldn't believe how much of a brain fog I had lived in for so very long and I never wanted to feel like that again.

The last five months have been an incredible journey. It has been filled with so many ups and downs, but I am finally starting to understand so much about this crazy thing called narcolepsy. I have so many questions and things I want to try. It all seems to be tying in with both my own life and that of my children and it is just kind of crazy to me some days. But it is also one of the coolest, most amazing things ever too. I know there is a reason all of this is happening to me. I am positive of it. I still have no idea what that is, but so many theories and thoughts collide in my head these days I know it is something wonderful. And I get excited just thinking about the possibility that some day I will actually see that connection and understand the purpose for this all. Until then, I will just keep plugging away, one day at a time, one minute at a time some days, and try to soak in as much of the journey as I possibly can.

Tuesday, March 11, 2014

The paths we take...

I really need a way to record my thoughts while they are playing through my head. Can't someone come up with some kind of transmitter that records your thoughts without you having to stop what you are doing and write them down? Whoever could come up with that would be a millionaire for sure! I just have so many thoughts and by the time I actually sit to jot them down they have yet again escaped me. Oh well...maybe I should start doing the voice recorder thing on my phone. Hmm...may have to play around with that option a little. 

The last six weeks I have been doing an amazing tele-class with Margaret Webb. I wish I could even begin to express what a difference she has made in my life. A year ago, I did my first class with her and I will never forget sitting in the first call or two thinking this was just a bunch of bs. Seriously, you want me to do what? Whatever! But each week I would call in anyway and the funny thing is, about the third week it was like something clicked. After the end of the class I truly couldn't believe how things for me had started to change. It was like she was the missing piece I have been needing in my life for a long while now. Again, it is so very hard to even begin to express what her openness, guidance, and willingness to share her knowledge has helped change my life so dramatically.

No, it didn't happen overnight. No, I am not all the way there yet. But for once, I feel like I am truly on the right path. No second guessing it anymore, I finally found that missing piece I needed to find myself and get on that path I was meant to be on. I still have a very long way to go, but with all the books and things I have been studying these last few years and her classes and calls, I finally feel I have the courage (most days), know how to gain the knowledge I need, and have the desire to do what I am truly supposed to be doing. I still haven't figured out what exactly that is yet, but I feel like I am finally on the right path. Completely and utterly on the right path. It is an amazing feeling.