Moving Forward!

When Elizabeth was first diagnosed all I wanted to do was learn everything I could about Autism. I remember reading everything I could get my hands on just to try to help me understand my daughter and her new diagnosis. The one thing that everything I read could not tell me was her prognosis. The reason for that is because no one knows, and that is so frustrating as a parent. The feeling of not knowing what the future holds for your child.

I guess in some ways not knowing may be a good thing. Not knowing means that the future can still be bright and that gives us hope. I think hope is important because hope is ultimately what drives us to keep going with our kids, to keep pushing them to be the best person they can be.

Autism changes your perspective, the life you thought your child would have may not be the life that they are headed for. That is still a hard thing for me to accept. I keep reminding myself that my idea of what her life should be may not be the life she is hoping for. I need to remind myself that as long as she is happy that is really all that matters. I need to push her to be the best Elizabeth that she can be and not the idea of what I have in my head of what she should be.

I think we need to remind ourselves that the outcome may not be bleak, it will get better. Elizabeth has come such a long way in the 2 years since she was diagnosed. It is kind of hard to realize that when you are in the thick of it all, but if I really take a look back at where we were 2 years ago I would see that she has come a long way. It has been in slow, painfully slow steps, but we are moving forward. She still does not have functional communication, she still has very poor social skills, and she still has some issues with sensory stuff and eating, but now she will lead me to some things she wants and that is a huge thing. Leading us to something was something she never did at 2 years old and now she is able to do that. Small steps are still steps!

Now I seldom read "educational" types of things on Autism. I stick more to personal things like blogs or inspiring stories. Most of the studies or the educational material on Autism all basically end up saying the same thing, they don't know for sure what the cause is and they don't know for sure what the cure it. I would rather stick to reading personal things like stories and blogs, things that help keep me going when I am having a tough time with my kids. Its nice to know that there are other people out there going through the same thing you are.I have even met a few other Autism parents here and there in the Pittsburgh area, its nice to surround yourself with other parents in your area that can help point you towards the good resources.

So anyway..........this was not even what I wanted to write about, but this is what popped into my head and came out so there you go. I guess I will have to change this post title from "Fun Summer Stuff" to something else. I will write about fun summer stuff another day.

I apologize in advance for any run on sentences and grammatical errors but I am a very lazy proofreader.

Comments are always appreciated!

Mom Fail

So last Thursday we had our 6 month dental appointment with Elizabeth at Children's Hospital. We go there for our dental visits because she is not the most easy patient to deal with and I figure if she has any issues in the future they can probably put her under for the procedures. So the last few times we have gone to there have been no problems, no cavities, ect. so I was not worried about this appointment. Well this time she had 3 cavities! Nothing makes you feel like a great Mom than your kid having a bunch of cavities, it is like you have a big sign hanging on you that says "hey I give my kid sugar all day and do not brush their teeth"

We do brush Elizabeth's teeth, at least as much as she will let us. She is actually pretty tolerant of it. I think the major problem is that we are still using baby toothpaste that she does not have to spit out. The baby toothpaste also does not have any fluoride in it. I am kind of at a loss as to how to teach her to use "grown up" toothpaste that you have to spit out. Her OT is currently working with her on brushing independently so maybe I will ask her. I guess it is like all of the other life skills that she is currently behind in, we just gotta roll with it until she gets to the point where she can do it.

The other issue is that to do the cavities they will have to sort of put her under, I guess they use a type of thing that puts her into what they call a twilight sleep where she will not remember any of it. The two options for this is to either give her a liquid to drink, which she will spit back out, or put the liquid up her nose, which sounds awful. So we are probably going to have to do the up the nose thing. The problem with the nose thing is after we do that Elizabeth is probably never going to go quietly into that office again. She already hates it and wants to leave right away, if we put a bunch of liquid up her nose she is going to remember that forever and freak out when we even get close to the room, not that I can blame her.

The first appointment that they had available was not until December. Fingers crossed that she does not get anymore cavities between now and then. I guess on the upside if she does at least they can take care of them while she is under.

In other news Elizabeth has also decided she likes to scream. She has always sort of screamed when she was mad or frustrated but now she is just screaming for the hell of it. I think she just likes to hear the sound of her own voice at full volume. Elizabeth is one of those kids who do not like loud noise, except apparently when she is the one making this noise, that is alright with her. Lucky me! =)

Frustration

So I am typing this on an iPad mini so I am sure there will be many mistakes made.

We are currently on vacation and things are going pretty well. Elizabeth has been doing really well, she is listening and not trying to bolt. Samantha is doing well behavior wise but has actually been sick. The first day of vacation she caught some type of stomach bug and was throwing up everything she ate.

So vacation over all has been good but the title of the post is frustration so I am sure you know it's not going to be all sunshine and roses.

My family including my parents and siblings are all down here along with my grandparents and my friend ( also babysitter) and her husband. My family always comes down here for a week this time of year. I am not sure if all families do this or if it is just a Pittsburgh thing to go to Ocean City in the summer. We have not come the past few years for various reasons, mostly having kids that were too young to actually enjoy the beach.

So tonight was the night that my friend was supposed to watch the kids so myself and my husband could go out to dinner and then have a night out. I was really looking forward to coming back to the hotel with the kids asleep and not having to do the usual bedroom routine. But that was not to be, instead I came home and the kids were still up and down on the deck with my family. That in itself did not make me mad, it was more what my Mother had to say about it. She had come up to the room and asked my friend to bring the down, again fine with me, and I am not upset with my friend at all over that. My anger is more toward the comments that were made.

She knew I was upset at her but the problem is that she cannot understand why. The reason I was upset and this is probably something that most of you reading this can relate to, is that I never get a night off and now seeing my kids I knew it would be me putting them to bed. What most people who only have "normal" kids do not understand is they I cannot just explain to my kid that Mommy wants to stay down here on the deck and relax so please go upstairs with the babysitter while I stay here. It just does not compute to my child, if Mommy is here she should be coming upstairs with me.

Instead of understanding where I am coming from I instead get comments about how I need to let my kids have fun and that I should be doing more with my kids. What she does not seem to get is that we spend every single weekend and even most weeknights doing things with my kids. I cam count on one hand the times that I have had a babysitter just to have a night out in the four years my kids have been alive. She will never understand what it is like to have a child that you always have to be on around, you cannot stop paying attention for even one second when your child lacks that safety awareness.

Right now Elizabeth is in a pretty good place but that is sometimes short lived. Overall though it was a great week. We all had a lot of fun and the kids were really good. They loved the beach and the pool. The weather was good and we only had one day of rain mid week.

I drove the whole way home because my husband caught whatever stomach bug Samantha had the first day.Of course the weather was fine until we got back into Pennsylvania where it started to monsoon. Seems to be the trend this summer in Pittsburgh, either rain or its so hot you cannot function.

Thanks for reading and if you like what you read please share it on Facebook!