Some New Information to Think About

So, I am not feeling the best today, but I am going to try to remember everything I wanted to say in this week's post. Here we go!

We got the application in for the iPad, and now we get to play the waiting game! When I have some down time, I look for other applications that I can get for free on my phone so that he can practice, but so far I have not found anything as good as his "Tap On Tommy" game, of which, he is getting far too good.

My Biotechnology professor sent me a link to the Yale website that has a bunch of speakers talking about various aspects of autism. I have only watched one so far (it was an hour and a half long) and it was about the social issues with autism. What struck me is the way he put how social behavior is looked at by a person with autism. When an autistic walks into a room, he or she sees THE ROOM. They notice the patterns on the floor, the color of the walls, what the lights look like... everything. But when someone else enters the room, the first thing they think about are what the people in the room are going to think about them. Autistic people could really care less about what people think about them, while that is the most important thing to other people. I found this striking for two reasons: One- That my child has the ability to do what I wish I could, and that is not really care about what other people think about me. And two- that autistic people care about the world around them, what happens in it, and notices what so many other people are too busy to notice. Which lead me to ask, this is a negative thing... why? But, I look forward to watching the rest of the videos, which goes through autism in infants and all the way up through to adulthood.

Another item that I watched on Autism was the PBS Nova Science Now! episode called Autism Genes. In it, they have been trying to hone in on the gene that they think is responsible for autism. I think during my break time on Monday at school, I will look up more on this to see what I can find.

But how has Alex been? He has been doing wonderfully, however I as mom would really like this bad attitude that he gets occasionally to go away. He has not been listening to me the greatest this past week, but when it is just him and I, he seems a bit better about it. And of course, today him and Tony had to fight a lot to the point where my head was just ringing. Boys... sheesh.

This week he will go to school with Valentines for all of his friends, signed all by himself. He also sent all of the other ladies that he loves in his life Valentines, so I hope they like his signed cards and their presents. And hopefully, for next week's post, I will be feeling a bit better so that I may remember more easily everything I wanted to say.

For those of you interested, here is where I found all the amazing material from my professor!

http://autism.yale.edu/

Doctor Day Blues

This week, our darling Alexzander had to go to the doctor. I scheduled him with the nurse from Pediatric Specialties (they specialize in doctor visits for children with special needs) that was there when he was diagnosed with Autism, and she was amazed with the progress he has made! She was excited to see that he was in good health, but still a very picky eater. She was glad that we are finding ways to get the nutrients he needs in him despite this. He is perfect in weight, he is on the tall side for his age (of course), and she, like all the other women who know him, is jealous of his eyelashes.

But, with all the praise, he still did not have a good trip to the doctor. It was a new place, scary, with a bunch of unfamiliar people. AND, he had to get two shots and some blood drawn. The two shots were his Preschool immunization shots, and she suggested another shot, however, his insurance didn't cover it, so I have to find a way to get it for him. The one shot has been making him very tired, and yesterday while I was at work, he got sick, threw up on the floor, so Tony let him take a 2 hour bath (putting warm water in periodically, of course). When I got home, Alex was passed out on the couch. Even now, he has been a little bit better, but he is curled up in Tony's blanket on the floor. But, he has at least eaten today, drank some juice, and has been talking to us. He even watched an episode of House this morning (he loves that show).

When the doctor was trying to give him his exam, he would tell her what all of her instrumentation was called and he would use it on himself and sometimes her, like her stethoscope. She was quite amazed that he knew all of the names! He even took my blood pressure, making sure that I was healthy too. But then, the terribleness started.

They took some blood just to make sure that he was ok. They wanted to test for lead in his blood, since he does like to put stuff in his mouth that doesn't belong there. When he got the shots, it only took 3 of us to hold him down, but when he had to get his blood drawn, it took three of us and Tony. But, after the shots and blood being taken, Tony took him to get chicken nuggets and fries before taking him to Grandpa's house so he could relax. When I got there after work and school to pick him up, he was still treating me like I had ruined his life, putting him through unmentionable horrors. But I reminded him that there is no one else he would rather cuddle with at the end of the day than me.

The doctor sent us home with an application for the Children's Miracle Network, in hopes they will give us money for an iPad for Alex. I want to get him two, one for here at home and one for Grandpa's house, because I think that he would benefit from the lack of distractions at Grandpa's house, and here we would be able to help him figure out how to play games and find him new apps to conquer here at home. Also, that way, we don't have to worry about it being broken during transport. I am thankful for the hospital doing this for us, but it is times like these when I wished I was not a poor college student and could get the stuff that would benefit him, no matter the cost. One day, hopefully within the next year, I will graduate and be making money and finally substantially contributing to our household. HOORAY for becoming an ADULT!

I have said it before, and I will say it again, I am so surprised by the amount of people who are interested in my child. Before this all started, I just figured it would be me and him, and I didn't want to be one of those parents that pushed him in everyone's faces and forced them to love him. Instead, he has done it all on his own, capturing people's hearts. I am equally surprised every time I get a message saying how much people like reading my blog about him, and, even though I don't have the time or publishing company, how people think I should turn this into a book.

Alex is a one of a kind kid. As the "Always Unique Totally Intelligent Sometimes Mysterious" page on Facebook stated, "For a person with autism to behave as "normal" would be unnatural. They offer amusing & imaginative humor which brightens up the day." Its true. And he would not be that way if it were not for the people he has in his life, who are there no matter what, every day. We all have a part in making him who he will be in the future.

Scary, huh?

Weekend Fun: Complete

What a weekend! I have to work the next two Saturdays, so Alex and I decided to get a lot done this weekend so that any time we do get together isn't overshadowed by me having to do homework or housework. He has been playing his "Tap on Tommy" game on my phone, and can now read all of the dozen or so words that it has on there. So what does this mean? This means that Tony and I have to save up to get him an iPad. It might take us a while, but we will try our hardest. Its not easy when only one of us works full time, and I have school stuff. He gathers information so quickly in that little head, that this seems to me to be the most logical next step.

I have noticed these past two days that at around 2 pm, when normal kids his age may be napping, that he does start to get a little more irritable, so I made him lay down and relax both yesterday and today, and when he got up about 2 hours later (he didn't nap, just read, talked to kitties, and talked to his stuffed Blue) he seemed to be in a better mood. I hope that by me doing this, it gets him into that frame of mind where laying down and resting isn't a bad thing so that when Kindergarten comes, he will be ready for it.

He loves outside. I took him for a sled ride today and even though he was sad that he forgot to take Blue along, he did have a good time. He loves snow! I think that his favorite thing to do in the snow is get it all over his boots then track it inside Grandpa and Grandma's house. It seems to be what he does every time I bring him there.

His talking, is getting better, and he is trying to repeat a lot of things that Tony says. Although his "V" sound sounds a lot like "B", and he sometimes adds "S"s where they don't belong, he is doing alright. He is doing great with the saying "Please" thing, and today he tried to get the kitty to say please to him because she wanted some of his string cheese.

Its amazing to watch him when all of us are home together. Its like he feels that his life is complete, because he is running around like a mad man, talking constantly, and just so overwhelmingly happy. When Tony was at work the last two days, he was pretty calm, read his books and listened to music, played with kitties, and was really good. But as soon as Tony came home, its like someone gave him a cup of sugar. Apparently, its like that when I come home too. At least we know that he loves us as much as we love him.

To The Pressures....

Alex is truly one amazing little boy. His talking is getting so much better and clearer, he doesn't freak out as much about things, and he seems to be becoming quite the independent little man.

However, things are still rather tough on me. There are times when I feel horrible, because I cannot communicate with him or understand what he wants, and we both get frustrated. There is nothing like not being able to help your child that makes you feel like a terrible parent.

I want to get him an iPad, to help with his learning and vocabulary, but the price tag kills me. Someone suggested that we try to get it written off on our taxes, however, a medical professional must suggest the item for it to be deducted. And getting in to the Learning and Developmental Diagnostic Center to talk to anyone with any power is harder than nailing jello to a wall.

We will find some way though. I am told a lot that Alex deserves this or deserves that, but this is something that I feel he kind of needs. He enjoys using my phone for playing his word games, so I can only assume that since he loves playing with the iPad at school, he would love to play with one at home too. And there are some times when I agree that he deserves the world, just because of all the shit he has had to deal with in his short life. However, I can only do so much, and I hope that my lack of ability to give him the world doesn't bite me in the behind later in life when he looks at me and says, "Why didn't I have that?"

Oi. This whole thing puts me into a funk. I just want to cuddle up with him and apologize that he got stuck with me for a mom, and not... like... Angelina Jolie. Or, I think if he could choose, he would want Fergie for a mom. He loves her.

One of the most difficult things is that I am a really bad guesser, which makes this whole situation even worse. I need people to just tell me what they want from me, don't play games and make me guess, because I am so unbelievably bad at that. And this is one thing that we have to do with Alex a lot... is guess.

It hurts. Sometimes it hurts so much that I feel it physically, like a crushing of my chest. I want to just lay down and cry, scream, anything just to let out some frustration. I get to the point where I just don't know what to do, so I do the few things I can do. The other night I finally got him used to getting his fingernails cut. Big step, considering before he would kick and scream, and Tony would have to hold him down while I cut his fingernails. I also cut his hair. He still hates the bits around the ears, which makes me miss and they are longer, but still, for the most part, his hair is short again. But to me, the over-acheiver, I need more victories than that! I often NEED to be the one to make him better. I find my mind wandering during some of my classes, thinking about what I know about the human body and trying to solve the problem of how autism is caused. I can't do it, and it irritates me.

Someone can say loving their pet is like having a child. They can also say that having neices or nephews, or cousins younger than them is like having a child. Its not. None of that is anywhere near having someone who is a part of you, fighting their way through this world. It is not even close to having a part of your heart, running around, learning and exploring, and ripping your soul in half when they are sad or hurt. It is the kind of love that truly is everlasting, and no matter what they do or say, nothing can make you stop loving them. Ever.

So.... Much.... Talking.......

In hindsight, I should not have gotten annoyed, but at the time... there was just so much of it, I was overwhelmed! This weekend Alex was talking.... and talking.... and TALKING... asking for stuff he didn't necessarily need, and every five minutes it was "Moooooommmmmmm?" or "Daaaaaaaddddddd?". Now, I sit here writing about it, hearing it in my head, and I can't help but giggle, because it was so damn cute! I think he is excited because he finally knows what words to say to get us to understand what he wants, he answers our questions and gets what he wanted... the pieces of this language puzzle are coming together!

On Saturday, he went to work with me since Grandpa was sick, and was really excited to do so! I only had to work 11 am to 2 pm, so a three hour shift was something I knew he could handle. He ate chips, made a picture, counted envelopes, counted register tape, checked the workings of our door into the stock room (it swings in both directions!), swept, helped me mop the back room and the cooler, talked on the dead cordless phone, and we tried to get him to answer the real phone but he wouldn't, like it was beyond his job description or something. After we got home, I took him outside and drug him in his sled around the block past our house, and we went around it four times with Alex saying, "YEEEHAW! YOU CAN DO IT! WOOOHOOO!!!" the whole time. So much help, he is. I told him that on my new epic journey that is losing some weight that he can be my personal trainer if he is going to be so positive even when it is only 15 degrees outside. Then we came back inside and we danced around like idiots to warm up, and then collapsed on the couch and watched some tv.

Today is the first day of the second to last large semester I have. I have high hopes entering today, considering I think my schedule looks super easy, and after the first week of March, I am going to be done with my Biotechnology class, so I will have even less to worry about. I am working almost every day during the week also, which excites me. The only day I will be gone late is Tuesdays, where I am at school, then work, then school until 7 pm. However, I think I kind of like when I have days like this in my week, because it gives Tony and Alex time to bond. As much as I would love it if Alex's every need was met by me, its not. He needs Tony to teach him to be a man, because I obviously don't know how. I think he has a bit of that with all four of the adults he is close to. He needs time alone with each one of us, Grandpa, Grandma, Tony and I, as well as together.

This past week, it finally snowed here in Wisconsin, and Alex could not have been more excited. He was so excited when he got to go outside to the bus and run around in his snow boots. He told me about a million times that it was snowing, and I told him that I hoped that he was the weather man that day since he already knew what was happening. He had a great week at school last week, and I hope that he continues that into this week.

Words, Words, Words

So not only has our darling Alexzander started to repeat things that we say (ok, not really WE so much as TONY), he has started to put his own spin on the things he says. For example: If he is asked to wash his feet because they smell bad, he will say, "You wash your feet cuz they smell bad." Its mostly sass. We are not really worried about him doing that, because it is what Tony and I do to each other, and we don't really mean it. He also was naming off things randomly yesterday. He would point at the computer and a perfect "Computer" would leave his lips. He wanted to color so he would point at his colors and say, "Colors". We even cracked the code (again, not really WE, more like TONY) of how to get him to say please for stuff. We say, "Chocolate milk......" and then he says, "Please!".

Another thing that was exciting is that he has learned what the word "milk" looks like. He went through his books yesterday and found the word in as many of them as he could and would point it out to me. "MILK!" He was very excited, and rightly so. Since that kid could hold things he was holding a book, just waiting for the day that someone would crack the code of how to read so that he could absorb all of the information possible from the pages.

Yesterday, after working since last Sunday, I was able to just spend time, just him and I. We curled up and watched a Madea movie (I am not sure why Alex and I like her so much, but we just do. Maybe because she kinda reminds me of my own Grandma Nofsinger?) and then we cleaned the living room. He has started to take more care of his books since getting his book shelf, and he really likes sliding them into their spots and laying on his Cars couch to look at them. If a kitty happens to go in there, he will read to them, even if it isn't really what the book is about. But hey, they are kitties. They don't know how to read either.

He is growing up so fast. Mental and Physical changes seem to be happening so quickly. He will be six years old in September, and he is already up to my chest. He is stubborn and shows it every day, but at the same time he is an awesome kid. The way he looks at the world just amazes me all the time, and I can tell he is like me because when he decides to do something, it happens. I was busy vacuuming and didn't hear him ask for some water, so he got it himself by scaling the kitchen drawers and grabbing a cup, and then got himself a drink. He decides for himself whether he likes you or not, and most times sticks with his decision.

For any of you out there who is afraid of having kids, let alone having kids who have autism, please let me tell you that it is really an experience that you make. You choose to make it a good one or a bad one. Yes, it can be stressful, but it is really up to you how you let that stress affect you. My son has learned how to understand my emotions by my voice, and has definitely seen me go through plenty of them. Autism isn't really about lack or surplus of faith, science pitfalls, or even you as a genetic donor. I think it is about a change in humans, and before our very eyes we may be seeing evolution at work. Will people start to see the world differently? Will Autism one day become the norm? I like having a child because he not only gives me something to live for, but he challenges me so that I have to be at my best as much as possible. Those little eyes are watching Tony and I even when we think he isn't, and who we are is going to affect who he becomes. While for some, that kind of responsibility can be daunting, but for me, it just is. I am not a perfect person, and I will never expect that from Alex. I want him to be civil, a gentleman to the ladies, and use common sense. I want him to be honest, kind, loving, and always stay true to who he is, no matter what anyone says. He already has most of that down, thankfully, and I can only hope that as the bullies present themselves in life, that he sticks to what he has been taught.

New Year, New Hope, New Heart Attacks

Its the new year, and I was lucky enough to get to spend the first day of it with my two favorite guys. We didn't let Alex stay up until midnight, however we did watch some Youtube videos of some fireworks from Sydney, Australia and London, England yesterday. Although Alex doesn't grasp the concept of a new year (I think), I have been plagued with thoughts since about noon on the 31st. I think about the things that are happening this year, that I want to happen, and that may happen... and I almost have a panic attack. So though this post may not be completely about Alex, it is about what our family has coming to it in 2012.

The biggest thing happening is my graduation with my Bachelors degree in December. With that comes three semesters (Spring, Summer, and Fall) of intense work, research, and the biggest and most closest thing: The GRE. Thinking about it is giving me a mild heart attack. I have to stay focused this whole year, my family's future depends on it. It is scary having that kind of responsibility, especially knowing that after I graduate I will be able to get a full time job, and make Alex's life better. He has had to deal with me through all of this, and he has done an excellent job! True, now that he has Tony to help deal with me, it is easier, but still very daunting for a 5 year old.

Even though I play the part differently, being me is rather daunting sometimes. Its hard to maintain a balance between spending enough time with my family, my relationship with Tony, school, work, and making sure I am up to date with all things Alex. Whenever I find that I am lacking in balance one way, I am devastated and shift everything to account for it. I don't do the whole "me time" thing because not only do I not believe in it, but I have far too many other things that require my time. And layered within that, I have the constant worry about Alex's future, any future children that Tony and I have, and just their well being in general. I think about how no matter what, I will stick up for Alex, Tony, and our hypothetical children and make sure that no one hurts them. Although I don't agree with Jenny McCarthy's views on Autism (because she has no scientific knowledge to back up her claims at all), I do agree with her idea of being a Mother Warrior, because a lot of the time it is a fight.

Along with my school, I have Alex's schooling to think about. If Tony and I decide that we finally cannot take the small space anymore and NEED to move, we would have to do it sometime over the summer, so that I have time to get Alex enrolled in whatever school district (*crossing fingers* COME ON WEST SALEM!) that we end up in, because this fall he will be in Kindergarten. Think about that! Our little boy will be in Kindergarten! Although it means that I am turning 26 this year (I think I just threw up in my mouth a little), Alex will be turning 6 years old this year! It makes me want to curl up on the couch with Kitties (since we are alone this morning) and sob into them and swear at them that they are not allowed to grow up. Speaking of growing up too fast... has anyone out there in the universe that reads this ever feel like you are being stalked by the next step in your life? Just follow me on this one. Lately, I have become content with the fact that Tony takes forever to decide that he wants to marry me, which is ok because it isn't going to really change anything, I will just get a name change. So the idea of having children is something that we have talked about a lot. Now.... the idea is stalking us. I swear. Its almost making me embarrassed. It seems like every time we turn around, something regarding having babies comes up. For example: My friend from work, Emily, told me that we should watch the show Sons of Anarchy. (Great show, by the way.) But the first episode, someone is pregnant! Really? Then, I started getting back into How I Met Your Mother, since Season 6 is on Netflix, and Marshall and Lily are trying to get pregnant. Jeeze. THEN, Tony and I watch Bones together.... and of course, Bones is pregnant. /facepalm Then, every family get together we have where I get to play with Leah (my goddaughter), someone always makes the observation that Alex is really good with babies... and that my parents are getting older.... really? REALLY PEOPLE? Yes... the concept of us having another child is stalking us. No, there are two things that need to happen before we have another child: One, Tony is marrying me, and two, we need a bigger place. Not that we all don't enjoy being close together, but it is getting so that our stuff doesn't have room, and Alex is running out of running space.

Oh 2012, you are a daunting one, aren't you? Trying to kill me and it's only Day 2! But, I look forward to seeing what changes comes to our family, what awesome advancements Alex sees, and where we will be 366 days from now (This year is a leap year, remember). Happy New Year Everyone!