Things that make me nervous....

Things that make me nervous...Aaron insisting on walking around with a full box of Rice Chex cereal  including bringing it in to the car when we left for school this morning. This stuff is messy and sharp when it gets spilled...nervous! Aaron always brings toy cars and things with him that he leaves  in the car while he's in school and he notices when they aren't there when I pick him up. The cereal box is in the car where he left it and if it's not there when I pick him up I guarantee he will get pissed. So although he's at school now, the Chex spillage danger is not over for the day.

Aaron did something amazing today!!

Overall today wasn't a great day however, Aaron did something today he has never done before, ever. He did pretend play (make believe play) with his little sister's baby doll, a blanket and the baby's bottle (the kind that the milk "disappears" when you turn the bottle upside down) and he did it for a long time....or what I consider to be a long time anyway, about 20-25 minutes. He covered the baby up, gave it lots of hugs and "fed" it over and over again. I was amazed. He literally has never done anything like that before in his entire life. Nothing. Zip. Zero. Nada. Zilch.
The way I understand it, the love of everything literal makes pretend play difficult to understand for the majority of autistic kids. Most of them do not engage in pretend play and just plain don't enjoy it. The same goes for sarcasm, metaphors, euphemisms, idioms, etc. They just don't get it. If you tell an autistic child "It's raining cats and dogs" they would probably have a heart attack and believe cats and dogs are literally falling from the sky. I heard a whole lecture about this very topic in the conference I went to last year (which I talked about in the "Books/Crazy" post).
Aaron absolutely falls in to this category, it is one of his "classic" signs of autism. He "flew" a hotwheels plane once for like 30 seconds but in hindsight I think he was flying it by his eyes because he was using it for stimming purposes or because planes are supposed to fly, not because he was pretending it was flying. He was helping it do what it was supposed to do, and when it didn't do it on it's own after he tried to help it, he didn't do it again. It clearly wasn't fun for him. His therapists call that pretend play but I consider that to be a pretend play gray area and the reason behind the action is not in his imagination, therefore in my humble opinion, it is not pretend play...one could consider today the same thing but Aaron knew the baby doll wasn't alive (as he has never played with or been affectionate with any stuffed animal unless he is using it as a pillow) and the bottle wasn't real (as he had it in his mouth several times trying to get the liquid out and it wouldn't come out).
The only animal he is affectionate with is our dog..our live, real dog...
....anyway....
A good example of Aaron and his dislike for the "make believe" is his love of Lightning McQueen from the movie Cars. Aaron loves all vehicles (cars, trains, planes, etc.) he uses them for his stimming, he drives them by his eyes at odd angles at all hours of the day, he loves to watch them drive and make them drive all over every part of the house. His favorite colors are red and blue, or those are what I have observed him becoming the most excited about in the past (he even has his own word for blue, it's "pop-pee"). Lightning McQueen is a red car. That is why he likes him. I had tried on many occasions in the past to put on the movie Cars for Aaron because he loves actual cars so much and he literally wanted nothing to do with it. He would leave the room until I turned it off. Once we found out Aaron had autism and I learned about this pretend play aversion and everything has to be literal then it made sense. Cars don't talk in real life and he knows that, so the movie Cars freaked him out. It also made sense why he only likes some cartoons, he won't watch cartoons where there are excessive amounts of talking vehicles or where the animals that talk look super realistic, animals don't talk either.
I only realized he liked Lightning McQueen when I couldn't decide what backpack to get him for preschool, it was between Spiderman and Lightning McQueen. Even though Aaron had never liked the movie Cars I asked one of his big sisters what she thought and she said since he liked red cars might as well go with Lightning McQueen. Seemed like the logical choice for sure so I went with the Lightning McQueen backpack, he seemed pretty excited about it when I brought it home. It also had an orange car on it which he was equally excited about. On his second or third day of school though there was a hot wheels size toy car of Lightning McQueen that was in a box of cars. He also happened to have on a Lightning McQueen shirt that day and the combo of those 2 things and his backpack got him pretty excited. He kept wanting to bring home the toy car from school and would get pretty upset when we had to leave it there so I decided to get him his own Lightning McQueen toy car for home and he has been obsessed with everything Lightning McQueen ever since. We decided to wait a couple months before we attempted a showing of the movie Cars again so hopefully his love of Lightning McQueen and Mater now (thanks to a friend who gave Aaron some toy cars from the movie and Aaron also happens to like tow trucks a lot) would be so great that seeing them on our big screen TV would just be amazing to him. I put the DVD in and the first scene came on with the race and he definitely liked that and recognized that it was Lightning McQueen, he was holding one of his many toys and pointed at the screen and the toy all the while excited jabbering was in full force. Then the race ended and all the cars started talking to one another and while Aaron didn't leave the room this time his interest waned quickly and he didn't care anymore just as before.
It's a bummer because it's a super cute movie but I get it. Cars don't talk in real life and the whole concept is just illogical to him. He would rather just do what he wants with the "real things" than be a spectator and watch animated versions of the things he loves doing something he doesn't understand.
The baby doll stuff today made me so proud though. I kept telling him what a good big brother he was to the baby and how sweet he was to feed her and give her hugs. Every time he would smile and of course that makes me smile.

Books, Books, Books...try to drive a person crazy

I own either in ebook or regular paper form about 15 books on autism. With the exception of 2, (1 of them is preordered and I haven't received it yet) I bought all of them in either December of 2012 or January of 2013. Aaron was diagnosed with autism in December 2012...so as is pretty obvious, I went hog wild with the book purchases pretty quick.
Only 2 of these books have I read all the way through and that is on purpose. I would say I have read on average about 50% of each of them. Frankly, it is depressing to read them, it makes me overanalyze our situation, look back and regret things I cannot change and the majority of the time it's just counter productive and takes up my precious non-autism, no kids free time (because there is no way my kids will let me read books while they are awake)...those books are not going to teach me any more about Aaron than I already know and they certainly aren't going to help me read his mind. So basically I use them for perspective when I start to lose focus on what I need to be doing to help Aaron make progress, when I start to misinterpret his actions as "bad boy stuff" even though I know in my rational mind that he can't help what he is doing, or when he does something new and we aren't sure if it's autism related or not (in those instances though it's easier most of the time to just turn to the internet first). I naturally speed read so I skim through the book I need to the part I need, read it, and then I'm done. They are informative don't get me wrong, autism is complicated and going in to it blindly can drive parents and their child crazy, but I certainly went overboard and bought waaaay to many books. That in itself can drive you crazy as well. There has to be a limit. I think I was so shocked at how ill informed we were about autism I bought everything I saw available instead of just what was recommended by Aaron's doctor. The recommendations would have been sufficient (plus two others)...those are my "go-to" books now, I already knew my child, I just needed to understand what was happening to him and why he was doing what he was doing for such a long time.
In what I consider to be a weird twist of fate, within a week of Aaron's autism diagnosis, one of Aaron's speech therapists found out about an autism conference in Casper, WY 1 day before it was to begin. I had missed the registration deadline but I called and they told me I could come anyway and  just pay when I got there, and I could only attend the Sunday part of the conference because my husband works Saturdays and I needed him to babysit kids for me. I knew NOTHING about autism yet and even though I knew I was missing the bulk of the conference and it was a 2 hour drive to Casper I really wanted to go and see what information I could gather. The only things going on that day were 2 separate lectures, one in the morning and one after lunch both given by a woman named Jennifer McIlwee Myers. She has Aspergers.
That was the best thing I ever could have done. No book...other than her book...has given me the kind of information and insight in to the mind and struggles of a person on the autism spectrum than the information she gave that day. She was funny, real, and so informative I draw on things she said every single day (no joke). Almost every single thing she said was true and accurate to Aaron and the way he is and if I had not seen her speak I would have no idea what the hell is going on right now because I haven't read 90% of what she told us about in any book or on any website...not in the way she put it anyway. She spoke in the nice, funny way that is relatable and easy to understand. It made me want to listen and learn and not want to crawl in to a hole and die or be intimidated by the extreme challenges that Aaron will face in his life or my husband and I will face as parents of a child with autism. She was well in to her 30's before she found out she had Aspergers and life was not easy for her even a little bit. She and her parents had to do this all on their own with zero knowledge of what was going on and they are all amazing people for coming through it with their family intact. I follow her on Facebook and she has another book coming out in July (this one is about sensory issues, the first was about teaching life skills to those on the spectrum) that I have already preordered and I am really looking forward to.

Before we knew about Aaron's autism I had to get rid of all the standard parenting books I had (specifically the "What to Expect" series). As helpful as I'm sure they are to some parents, to me they just made me sad, anxious, and angry. They are so focused on milestones that they can make a parent obsessive to the point of making book shaped holes in your drywall. They have little to no information on autism, all they say over and over again is, "your child should be able to do this and if he can't, see the pediatrician." Well thanks a lot. I know the authors don't want to alarm anyone or turn new moms in to hypochondriacs but constantly suggesting I take my child to the doctor isn't any better than maybe a quick suggestion on what problems may be causing developmental delays at these specific ages. If they really are consulting with all these doctors to write these books I don't think it is so ridiculous that an actual doctor could put a line or two in there about what might be going on. I mean, hey, it would make more words in the book, making the book longer and they could charge more...so everyone wins right?
It just seems to me somewhere along the writing process someone might have come along who could have said, "What if a new mom is reading our book and her child has autism? Don't you think after the billionth time of her kid missing a milestone our book might end up in the trash if we don't provide some sort of productive advice or resource other than 'See a doctor' or 'Ask about this at the next checkup.' " There aren't many disorders that I can think of other than autism where a child presents as being completely typical on the exterior (I'm trying to be politically correct and not use the word "normal") but has some major shit going on underneath that isn't detectable by blood tests, etc. They may have changed the books since my 5 year old version but mine said nothing about autism other than a very small amount which clearly wasn't enough to clue me in to anything. And I gotta say, it was glaringly obvious he was autistic if I had known the signs....just sayin.
I'll tell that story later. You think I drone on and on now...just wait....

Starting off...

Thank you to Michele and Chandra for telling me to do this... :)

I swear other blog posts will be funnier than this...I felt like I needed to start this today and it is unfortunately on a more serious note. There is some sarcasm in here somewhere. It wouldn't be me without sarcasm.

I'm standing here at my kitchen island in my brand new house looking out my giant back windows at the river and the rolling hills of Wyoming. We've been here in our new house for a month and our house took over a year to build. This is my first blog post. I realize I'm being very matter of fact but that's how I feel right now because as I stand here writing this while my kids watch Special Agent Oso, I am finally being forced to face some hard facts.

I didn't want this blog to start out on a negative/serious note or a "less than happy" note because I think I felt like when we moved in to this new house that everything was supposed to be all marshmallows and rainbows, and everything that was wrong at my other house (I'll get in to that later, that is going to break my fingers it is such a long story) would just magically go away. Fact...hard fact....it doesn't just all go away....granted it is a bit easier, I have some relaxing outlets now and a real home for my children instead of just a 100 year old roof from hell over their heads, but...as it will always be...autism is still there.

As a matter of fact I completely broke down the night before last because Aaron was "mean to me" when I had a migraine. By that I mean he wasn't as nice as he usually is when I don't feel good and he didn't "say" sorry later (he is non-verbal so he puts his hand on your cheek to say sorry when he does something wrong). Contrary to what most people think, autistic people are very empathetic, they just don't express it well. Aaron is very good at picking up on when I don't feel good and is usually extra nice to me and will give me lots of hugs and kisses. He didn't do that at any point, even a little bit. He sat next to me on the bed while I sat there trying to keep my head from exploding and slammed his head in to the pillow next to me over and over again for 20 minutes even though I kept telling him to stop and that it was making me sick. When he finally decided to start "hitting" (attention getting hits, not violent or anything, Aaron isn't like that) my arm because I wouldn't pay attention to him, I finally told him to just go away. It breaks my heart to do that because I always worry that he doesn't understand why I told him to go away. Daddy was home so he went in to the living room and played with Daddy and his little sister. This move to a new house, while scores healthier, has created a lot of anxiety for Aaron, but overall his personality hasn't changed and his reactions to certain situations haven't changed so this behavior was out of the ordinary.

Because of the trauma caused to my body and my mind by the house from hell I am still over emotional and will cry at the drop of a hat (I would cry while living there several times a day) and I had a migraine I was bawling when the kid's bedtime rolled around and I couldn't help but cry in front of Aaron. Usually he will shower me with hugs and kisses if he sees me cry and he didn't do any of that. He just looked past me and was doing a lot of verbal stimming (which was probably my fault) he was completely checked out. I had to put him to bed without getting my usual smile from him or telling him that he is my best friend which I have done every night since he was born. He didn't even know I was in the room. We put my daughter to bed and I tried to get a hug from her, she hugged me for less than a second (literally) punched me in the throat to get away and wanted down. She is not affectionate with me at all (something I blame on the house from hell also, another long story) then after everyone was in bed my husband asked me why I was crying so hard and I just lost it.

It wasn't just the incident on my bed that was upsetting, it was the rejection from both kids in such a short period of time, the realization that life isn't perfect just because I'm finally in my dream house, I don't have anyone to talk to who fully understands what it is like to have an autistic child who doesn't speak, I also have an almost 2 year old daughter who copies her brother so much that she doesn't speak either, she uses his ASL signs...I don't know if or when she will speak, I don't know what her deal is to be honest. I just want to hear one of my kids say "Mommy" or "I love you". No offense to anyone but people take those things for granted. My husband has 2 older daughters (who are my daughters too but they didn't become mine until teenage years) so even he knows what it's like to hear those words from your child. I don't. Some could call it a pity party for sure but I'm hit in the face over and over again with reminders of everything I'm never going to experience over and over again every single day. It's hard and I wonder when I will get a thicker skin and stop letting it get to me so much. When I was in the house from hell I think it was easier to ignore because my whole life was consumed with how much I hated that house and how I had to spend every second of every day trying to keep the kids from getting hurt in there. Without that lovely distraction now I have all these things I was able to block out before bombarding me at all times. I feel guilty complaining about anything lately because there are plenty of people around here who would love and deserve to have a house like mine. I will say though without guilt or reservation that my husband and I are also deserving of our house. We worked hard to get it and we are also no spring chickens. This is the first house we have owned together and we have been married almost 10 years. I just feel guilty complaining when I know there are people around here who would be like "That bitch just built a new house...what the hell does she have to complain about?" For anyone who reads this who doesn't live here, a new house in this town is a big deal, it doesn't happen often...thus the guilt...I don't even know if it's guilt actually, it's just a weird feeling like I have to watch what I say or I will be labeled around town as someone who is unappreciative of what I have because that couldn't be further from the truth. I absolutely appreciate what I have. Nothing major in my life has come to me with ease (not my husband, my children, etc), I had to go through a lot of shit to get where I am so I don't take anything for granted. I just don't want there to be any confusion.

Anyway....

The other thing that contributed to my breakdown after bedtime the other night was that I pick up my son from school every day and I have no idea what he did or if he had fun. I have to see all the other kids telling their parents all the exciting things that happened to them that day and all the fun things they saw and I don't get to experience any of that. The school started out doing this communication notebook that they would send home in Aaron's backpack every day. The first few times it said the stuff he did that day (mostly). Now all it says it whether he ate or not and if he hit or kicked anyone. Every once in a while they will mention if he was in an especially good mood but that's about it. I still ask him every day if he had a good day and what he did. I am met with silence 100% of the time and I don't expect any different but I will never stop asking. I hope he is answering me in his head, I always want him to know that I am interested. I also tell him that I missed him while he was at school, which is true. As challenging as this life is, and as nice as it is to have a little break and just have the one child for short periods of time, I love him more than anything and wouldn't trade him for anything and I always miss him when he isn't with me.

It's not all doom and gloom, I just had a bad couple of days and needed to get it out...needed a good time to start the blog I've been meaning to start for over a month...bingo.

What do I hope to get out of this blog? I hope it is a cathartic experience for me. I don't have anyone to talk to, who really, truly understands what it's like to raise a severely autistic child, so I will talk to the universe instead. The universe will not say to me "you know what you need?" (I can't stand that. I need a listening ear, not a therapist or an event planner.) Doing a hand written journal would make my hand fall off and maybe a blog might help someone else or make them laugh...not this post but maybe one in the future. I promise I am funny.

I still have not decided if I will keep Aaron "anonymous" in the sense of posting pictures of his face. I could try to give him a fake first name but I would screw that up in a second so I'm not even going to try, so for now it will be side and back shots. I am on the fence about it. Our town is small enough but I would never want to embarrass him because everyone here pretty much knows who we are, but if this blog were to eventually be followed by a lot of people would I want a ton of strangers to know his face? I'm not sure. I could always shut it down too if it ever bothered him or if I thought it was affecting him in any way or had the potential to. I will do anything for him. He's only 4 now so I have a while before he really will even know what I'm doing, if ever. Plus, this blog is not to bitch about Aaron and autism. It is to occasionally vent (which may be a fancy word for "bitch") about autism, bring much needed awareness to autism for those who want it, to let the universe know how amazing, sweet, fun and incredible Aaron is, and to shed light on the not so fun and painful parts of autism that hurt my precious child every day. It is a chance for me to tell autism that "I don't like you sometimes...you are mean to my baby."

Stay tuned...