An Autism Pants Christmas

Okay soooo Christmas. This was our first year in our new house, Rachel's first year with a tree (our other house was too small) and this is the first year where I think Aaron actually “got it” as far as presents are concerned. He knows there is something inside the wrapping paper. The problem is though that he thinks everything is for him. You hand him one thing and a flood gate is opened and then once the novelty of the gift has temporarily worn off he is off to the next and if you are looking away someone else’s gift is potentially being opened…or as Aaron so adorably tries so hard to say “oh-ee” (it is so cute.)

Rachel threw everything as usual, that part of her has not changed sans vitamin FYI. She very much likes this Minnie Mouse vacuum my sister got for her though. I knew she would love it...it’s noisy and has a strobe light.

Aaron got 67 jillion trains. One of them is motorized and he got that from Grandma and Grandpa and it comes with a track. I’d say it’s like the “made in China” version of a Lionel train set for kids. It’s cute and durable”ish” and I know this because it’s been thrown several times today by Aaron for derailments while he is trying to let it drive within millimeters of his eyes so he can stim with it, but the cars are light and it derails a lot. It has 2 speeds. Super fast and insane super fast. For such a light train I really wish it wouldn't go so fast because then it wouldn't get thrown so much for derailing so often. The engine/wheel noise when it derails is much louder and makes Aaron immediately put his hands over his ears thus stopping him from being able to fix the train so I’m guessing that’s why it is being thrown - to shut it up and get it away from his ears. He loves it though because the batteries had to be replaced 3 times today he played with it so much and I had to take the engine with the batteries in it with me when I put him to bed so he wouldn't get out of bed to play with it in the dark. He did however, get out of bed and get the rest of the train and put it in bed with him. I thought he might, he has every other vehicle in the known universe in bed with him already.

The kids got mini trampolines. Aaron stim jumps aaaaallllllll day and verbal stims at the same time, loudest thing ever. Rachel would just “Tigger” around the house if she could everywhere so we thought they would fight over one trampoline. My mom asked what she should get them. The answer? 2 trampolines. I thought they would go crazy over these things because of how much each of them loves to jump. So far they really don’t seem that excited about them. They have jumped on them but not in the insane way I thought they would. It hasn't even been 24 hours though. Maybe it’s not fun if they can’t fight over it.

We went to Christmas dinner at Grandma and Grandpa’s house. Both kids refused to eat anything. Shocker. Aaron was blaring Mickey Mouse Clubhouse on his iPad while we were trying to eat. We turned it down, he turned it up, down, up, down, up….etc. Fun. He kept yanking on my arm trying to get me to come with him and do God knows what but I told him I was going to sit at the table and he could go play. He would not have that. So he yanked on my arm intermittently for about an hour. He wouldn't let Rachel come near me or he would hit her. He hit his cousin a few times too. Every once in a while he would take this glitter wand I gave him as a sensory toy and slam it in to the table.

I finally decided that it was not going to get any better so we came home. My husband and 23 year old daughter who is visiting for the holiday stayed to hang out with the grandparents. I put kids to bed as fast as I could and now it is all nice and quiet. I have my pretty Christmas tree and a glass of wine…and FarCry4!! Which we had before Christmas but I hardly ever get to play so I’m playing it now before my husband comes home and takes the controller away.

I hope everyone had a wonderful Christmas!

Rachel Played with Another Kid Today!!!

So today I was in a meeting with one of Rachel's therapists. We were updating info on her behaviors and skills and stuff before her IEP meeting on Friday.

My friend came in and she had an adorable little boy with her who she was babysitting. She had to go get some Christmas presents for the kids from Santa out of my car so she left him with us for a minute because Rachel appeared interested and he seemed to be having a good time with us. Prior to that Rachel was just wandering around the room.

She actually started playing with this kid!!! They were playing chase, initiated by her - she was the chaser! They were playing a sort of hide and seek/peek-a-boo type thing under the table and she would laugh when he would pop out and they were even sharing toys. She was genuinely interested in playing with him. She has never shown interest in another child this way...ever.

My friend, the one doing the babysitting, has twin girls who are about about 2 1/2 years older than Rachel. Rachel has taken a liking to one of them and will look at her almost like a big sister and imitate her on occasion but she has never played with her like she played with this boy.

I could totally make boy jokes now but I won't so my husband's head doesn't explode.

I do attribute this to us not giving Rachel multivitamins anymore. We stopped giving them to her in the beginning of November. I don't know if I mentioned this before. Maybe I did. I talk it about so much lately I don't remember where I have and where I haven't. She is a totally different child. She laughs now at things that are funny. For the very first time the other day she stacked blocks, she strung beads on a string, she is sitting and playing with apps on an iPad instead of just obsessively pushing the home button. She smiles and laughs instead of being a stone faced zombie. She is quite a bit more affectionate, although it is still on her terms but I am getting a lot more hugs lately which is so incredible it makes my heart burst. EVERYONE notices the difference, even without me saying anything. It's absolutely amazing.

Considering the way vitamins...any vitamins...make me feel, I can't believe I never thought before that vitamins may have the same effect on her or Aaron. I haven't noticed a difference with Aaron but Rachel is night and day. Clearly I did the right thing. I have my older daughter to thank for finding out that information about the vitamins too. So thanks PANTS!

With cautious optimism I am excited to see what she will do next. I may have to stalk this other kid now though for play dates...hahaha....just kidding...well...maybe not.

"Woo Hoo!"

Something pretty cool happened today...Rachel, other than baby babble is totally non-verbal. She has never said her first word or anything like that. When I say that people usually say "Not even Mama or Daddy?" No. Not even those...last time I checked those were words (sarcasm) and she has not said a word.

Anyway, she has a few of her own words and those are the only sounds she will imitate, so in addition to trying to get her to imitate basic sounds that we say to her, we also talk to her in her own words that way she at least successfully imitates something and realizes it's a good thing.

I had a friend over this morning, she and Rachel have become good friends thanks to fudge covered Oreos and Ghirardelli Peppermint Bark...it only took a year for Rachel not to run screaming from the room every time she came over. My friend kept saying "Woo hoo!" to Rachel and Rachel suddenly imitated her! More than once!!

Of course the first time she did it I was out of the damn room (figures.) My friend started yelling "She did it!" so I ran out of the room I was in and I heard her do it twice. We even got it on video but as most kids do, Rachel knows when the camera is on and she stops performing. She did do it once though in the very first second of the video and then she wouldn't do it again. Sad mommy....

At the end of the day (I hate that saying but it seems appropriate here) it's not actual words but she imitated sounds that were not part of "Rachel speak" and that is amazing.

Aaron has severe apraxia, there is no question about that, but Rachel's actual speech disorder is a mystery so I am and have been very eager for her to start trying to imitate anything other than her own stuff to see what comes out. Hopefully there is more to come in that area. I'll try to get it on video again where it's not half a second long.

Awesome Mommy and Roo Day

Today was Roo's first dental appointment.

My husband and I have 2 things going for us in this autism packed world in which we live that most others do not, in that our children both sleep well, (mostly) and they let us brush their teeth every day without (much) complaint. Their tolerance levels for it are finite though, especially with Aaron. We have to move fast or the inevitable freakout will happen. According to the dentist though who specializes in special needs children Aaron's teeth looked fantastic. I went in there with him a couple months ago fully expecting him to say they wanted to sedate him and do a full dental exam. He just had to look in there with a mirror while Aaron screamed bloody murder and we were all done. Simple as that!

Roo's appointment this morning was the same way. In and out...literally! She was easier than Aaron which I expected although she still isn't cooperative at all and it's difficult if not impossible to explain to her what you are trying to do. Part of that is her age, part of that is autism.

The hardest part of the appointment was getting there. We live 90 miles from the city where the dentist is. It is all rural highways of nothingness and three days ago it was 70 degrees and my air conditioner in my house was on. Today it is snowing and the temperature is 9. NINE.

The snow sitting all over the highway today was all light and airy so every time a tractor trailer blew past us at a million miles per hour I couldn't see the road for like 30 seconds. That sure was fun.

On any given day Roo...okay...I will inevitably type her name by accident at some point since now the blog is also about her. I gave her a nickname before because the blog originally was only about Aaron (and me and my issues...haha.) I am too scatterbrained to remember to do the Roo thing every time. I have put her real name in a blog post before by accident and had to go back and edit it out. It is pointless to keep trying. Even though Roo really is her nickname around here I still won't be able to be perfect with it so why even try....I use Aaron's real name after all. Her real name is Rachel. We call her Rachel Roo.

So anyway.... On any given day Rachel tries my patience for a good 70% of the time she is awake. She is a complete spaz. I'm not complaining right now, just giving background information for the point of this story. And it's kind of an interesting side by side to Aaron because they are complete opposites as far as autism is concerned. She bangs in to everything on purpose, throws everything she can, (food, loudest things possible, etc.) is defiant in every way possible, when people cry she laughs, she will not eat even though she is starving so feeding her takes hours or she holds food in her mouth for hours, she does every dangerous thing imaginable without blinking an eye and she will not sit and play with anything for longer than a couple minutes and she definitely will not play with us unless it is rowdy play (chasing, swinging,etc.)

People sometimes ask me what to get her for gifts. I don't even know the answer. I don't even know what she really likes. That is how often she plays with stuff. She likes to jump and do things that are dangerous. Maybe for Christmas someone can pay her tuition to stunt man school. There. That's a gift idea.

One of her biggest issues is communication obviously. She's too young for an AAC device and even though she has taught herself all of Aaron's sign language signs she isn't very good at communicating otherwise and it is frustrating for all of us. Especially for her.

I guess a big difference between Aaron and Rachel communication wise is Aaron is very good at communicating what he wants non-verbally because he knows he cannot get it himself. His gross motor skills are not the greatest and he is pretty scared to try and do a lot of things. Rachel is pretty bad at communicating what she wants because in her heart of hearts (I believe) she thinks she can get it herself if we don't understand. So she will use minimal effort to ask for help and when we don't understand she will just try to do it herself. That is sometimes/usually where the danger, chaos, and destruction comes in to play. And even if you offer to help her after she has started the process she wants nothing to do with you because she enjoys danger, chaos and destruction.

That's just a glimpse of her but you get the drift.

Anyway, she's difficult to say the least but she is spectacularly adorable and cute and silly. I have to resist the urge to hug her every second which is hard to do because she is not affectionate at all and has to initiate the affection herself or she'll straight up kick your ass. Everything she does, it doesn't matter about 2 seconds later because she is so f'ing cute. My husband all the time says to me after she does all this terrible stuff, "But look how cute she is!" And you know what? He is right. She still gets in a reasonable amount of trouble, we do have consistent rules around here (we have to or it would be complete chaos) but I find it very hard not to immediately smile when I look at her one second later because she will always be doing something adorable.

When I take her out in public people say it to me too. People stopped us in Sam's Club and Target a bunch of times today because they wanted to say hi to her because she is so cute. I'm not trying to brag, I'm just sayin....with her behavior it's a good thing for her she's so cute. Plus even though her affect is very flat most of the time when she gets in to a silly mood she is really hilarious. She's one of those people where you really appreciate the little moments. I love her so so much.

We had a lot of errands to run today after the dentist and I was (sort of) dreading it because of the cold and because traditionally Rachel isn't cooperative. Aaron has his iPad and can be distracted for a good amount of time with that. Not Rachel. There is nothing to distract her. Plus we were getting close to her nap time. And for the record I don't take them out together. It's one or the other. That is just straight up insanity when it's both of them.

We went to 5 different places today for over 3 hours and Rachel was a perfect angel! She was smiling and happy and looking around, she wasn't fighting to get out of the carts like she usually is (she is not allowed out of the carts at any time...that would be a disaster.) If she tried to grab things and I told her to stop she actually stopped! The only time she got a little squirmy was in Sam's Club but it was because she was getting tired. I did however, have a secret weapon and had a couple squares of that Ghirardelli Peppermint Christmas Bark in my pocket. Thanks to a friend of mine who came with us last week while we got Rachel a vaccination and a flu shot she figured out that Rachel loves that stuff, so I had a couple of those at the ready just in case. It worked like a charm. Sort of like Aaron's magic Halloween Tootsie Rolls (he managed to get through his class trick or treat parade for the very first time because I was constantly feeding him Tootsie Rolls.)

We are of course home now, and while I'm typing this she's throwing sippy cups on our bamboo floor so hard it makes dents in the floor and gives me a heart attack, she's taking the string cheese she's supposed to be eating and smashing it in to the carpet, taking Aaron's Chuggington trains and throwing them around....etc....etc....etc.

It was just a really nice day though. It was freezing and just a day of running errands, but I felt like I got to just spend the day with my little girl, not my little girl with autism.

It has taken two and a half months to get here but the report from Rachel's doctor finally arrived which is the detailed report about her autism diagnosis. It is sitting in front of me right now in a giant envelope. I have been dying to read it for two and a half months. I don't even want to open it today though because I know it will depress me so I will open it tomorrow and just enjoy the rest of the great day Rachel and I had together....while she throws stuff around behind me... ;)

My Baby Will Have a Voice Soon :)

Something so wonderful happened today and I'm finding it hard to even put in to words how grateful we are for it.

As is par for the course with me I have to lead up to the big news with the stuff that led up to the big news...that makes it better...you all know it does....

Sooooo.....

Part 1 of 2 of the lead up:

We had Aaron's IEP meeting today which went really well. I got to meet the teachers from the "big kid's school" that Aaron will be attending next year. They were there because Aaron's IEP that he got today will carry over in to the next school year for a few months. I have wanted to meet them and find out more about the kindergarten class Aaron will be in. It's called "Developmental Kindergarten" it's basically kindergarten for those who aren't ready for regular kindergarten. I'm so glad something like this exists.

Anyway, Aaron's IEP focused on all the usual things, speech, OT, PT, social/emotional therapy etc. and there was a lot of focus on communication because of his mood lately, (which is still a mystery) and the success with the iPad we had for a while on loan.

I told the 10 or so people that were there about the iPad my husband and I won on our business trip and that all we needed now was the app. Everyone thought that was great but we still had no plan in place for the app or who was going to get it or how long it would be before Aaron could get this thing going. It was in the works but every day without this thing is another day Aaron is frustrated at not being able to communicate.

Part 2 of 2 of the lead up:

Last month Aaron's school did a fundraiser where we sold these cool 3D cups with sports logos on them from professional sports teams. I sent out an email to family and friends to ask if they wanted to participate.

I have this amazing friend who I met about 15 years ago, she was a bridesmaid in my wedding, we have done so much together, we worked together forever, we even worked together with my husband at one point. Those were some fun times. She has an amazing husband and an amazing family. Her parents are amazing, her sisters are adorable, (they are adults but still adorable) and she and her husband have the cutest daughter ever who is only 3 months younger than Roo...they are BFF's even if they don't see each other very often....and maybe don't know it.

So my friend, we will call her "JJ" (heh) wanted to participate in the fundraiser and so did her parents but they live about 4 hours away from us and we are all busy, so when we finally got in touch with one another there wasn't enough time to get her order in before the turn in deadline. She and her parents decided they wanted to donate money anyway...super nice of them. That's just the kind of people they are.

Okay, here's the BIG NEWS:

JJ's husband read my blog post from the other day about Aaron's AAC device and that we didn't have the app yet. While this was certainly not my intention with that post because I did not expect this at all, I was just excited that we won an iPad, I got a text from JJ today asking if I had time to chat. I did have time to chat, so she called me and said that she and her husband had the same idea without really even talking about it and that they and her parents wanted to gift Aaron his AAC app...

Even as I am typing this I am shaking my head because I am trying and failing to come up with words that express how amazing these people are, but there are really no words for how wonderful a gift this is. Seriously...no words. How do you tell people thank you for giving your child the gift of a voice? You really can't....

It is noteworthy that people who aren't even related to Aaron (although we do consider every one of them family) have been there for him in the past for so many major things and now for this. They let us stay with them every time we have to go to Denver for something Aaron related so we won't have to pay for a hotel, they participated in the Autism Speaks walk with us, they do research on sensory toys for him, they do more for Aaron than some of his own blood relatives. And now this....

I only wish Aaron could understand what a wonderful gift he has been given! I will find a way for him to say "thank you" with his new app though...I can't wait!! I called his speech therapist and she was super excited too...

The shock proof case is on it's way from Amazon so there will be no Aaron/iPad interaction until that gets here...but I can plug it in to the charger and download the app! haha

Thank you thank you thank you times infiniti!!!!! We love you guys!!!!

AAC Device for Aaron…We’re halfway there!

About 6 months ago a friend of mine became the speech pathologist at Aaron’s school.  Prior to the start of the school year she and I went to a conference for an organization here in my state that lends iPads and a few other devices out to people and schools loaded with all the AAC apps that are available to people with communication needs. They let you keep them for a few weeks so you can play around with them before you go spend hundreds (sometimes thousands) of dollars on something. That way you don’t have to do it sight unseen.  The conference was great, I learned a lot and saw a lot of different devices and apps I never knew about.

I also saw the DynaVox which I have blogged and talked about before.  I knew about it from the Kreed’s World blog.  Kreed is 17 and communicates with a DynaVox and does it really well! I think the one we saw is the one Kreed has and it seems the right size for someone his age. I liked it when I saw it in person however it is big and Aaron is still pretty young…I think he would drop it a lot…and it is super expensive.

About a month ago my friend/Aaron’s speech therapist (and Roo’s too) got on loan, an iPad from this organization loaded with a bunch of AAC apps. We ended up using Proloquo2go. She set it up for Aaron to use in his class for a couple weeks and although I didn't get to see it in action he apparently used it quite a bit and it went really well!! We do a photo collage for the kids every year so they can show photos of their family to their classmates. I have to caption Aaron's photos because he is non-verbal but this year he got to sit with the therapist in front of the class and tell them with his device who each member of his family is. That must have been so great...that is one thing I wish I had seen.

I got to take the iPad home for about 4 days and I didn't get a lot of opportunity to play with it, but from what I did see I liked it. I also like the face that all the people at the school liked it and especially that Aaron liked it and was receptive to using it.

So, everyone was bummed when we had to send the iPad back. Aaron has his own iPad but it has all his own stuff on it and he would never be able to use it as his AAC device. He needs a separate iPad to use as a dedicated AAC device.

Enter the business trip my husband and I just went on.

Every year my husband and I go for 3 days to a conference/market for our business. Long story short, there are hundreds of vendors there wanting us to sell their products in our store so to get us to their booth location in one of the largest convention centers in the USA they lure us over there with drawings for prizes.

One of these booths (which we actually went to because we were buying something anyway) was giving away an iPad mini. Well lo and behold, of all of the things we entered to win at this market we won that iPad mini!

Actually, Aaron won the iPad mini! Before we even arrived we had talked about what we would do if we won another iPad (we won an iPad the year before too...it's my husband's iPad now) and we said we would make it Aaron's dedicated AAC device. So now we have the device, we just need the app which is a lot of money but supposedly the school district will pay for a communication device for Aaron but I don’t know if that’s while he’s in preschool or if he has to wait until next year when he's in the big kid school.  Maybe they’ll go “halfsies” with us on the app…haha.  He’s on a waiting list for state assistance that will pay for a device but I don’t know how long that will take.  It could take years.

He has been really out of sorts since we got back from our trip. Very moody and upset, stimming a lot, chewing on everything, hitting/kicking, etc. I can’t imagine how valuable it would be to have a communication device right now that Aaron was already adept at using so he could tell us what’s wrong. I haven’t the foggiest idea to be honest and it’s very frustrating.

But…we’re halfway there…how awesome is that!? If we have to fork over our own money for the whole app we will, we just want for Aaron to be able to communicate but some help from the school would be nice and it would certainly speed this process along. We shall see....

I really want to write a letter to the company that gave us this iPad and tell them what a gift they have given us. They have accelerated our child’s potential ability to communicate by a huge amount of time and that is worth everything. And it was all literally luck of the draw….

The Power of the Nacho Cheese Dorito on Non-Verbal Autism...well probably not, but it is a big coincidence...

Aaron lost his speech abruptly at 18 months old. At that point he had a vocabulary of only about 15 words or so (I go back and forth with this number, I really don't remember) and all except a couple were in the B sound. He never put 2 words together. His speech was behind at that time as well...then suddenly nothing except "ball" which he has maintained through to this day and was his first word when he was a baby. It has morphed over time though...it used to be a clear sounding "ball" then it went to "bah" then "a-bah" then "a-pah" then "pah" which is what it is now.

He will occasionally say "Mama" but it applies to many situations (for instance "look at this, what is this) not just me and is usually said in extreme frustration.

So other than the occasional random word out of nowhere that never appears again that's been it for 3 years.

Until the Nacho Cheese Dorito.

As you probably know Aaron has Celiac disease so he can't have any gluten and during his endoscopy to diagnose his celiac they also scoped the "other end" (if you get my drift) to do some biopsies just to make sure his 2 years of diarrhea wasn't a result of multiple things. What they found was that Aaron produces almost no Lactase, the enzyme necessary to digest Lactose. So basically he's lactose intolerant on an Everest level scale. When we did his diet change for the Celiac, we took him off all gluten and all dairy, not just lactose free stuff but all dairy. Sometimes the casein protein in dairy has a negative affect on autistic kids so we thought maybe if we eliminated it since we sort of had to do it anyway, Aaron might have some symptom improvement...no dice but no big deal...I didn't have high expectations for that anyway. Aaron drinks almond milk now which he loves (it's actually not bad) and breaks the bank on, he eats almond yogurt which I think is gross but he likes it.

I know I'm going on and on about this but there is a point...

Doritos are gluten free but they have milk in them because of the "cheese" (I'm sorry I have to use quotes around cheese)...anyway...so Aaron couldn't have them anymore when we changed his diet...this was over a year ago. He didn't have them a lot so it wasn't a big deal. Every once in a while he'll get pissed because we are eating something that he can't have anymore so we either get him a gluten free dairy free substitute (we found an Oreo sub, a chocolate chip cookie sub, pasta sub, etc.) or we just don't have it in front of him...except Doritos. My husband likes them and eats them a lot but Aaron didn't seem to care until recently and I couldn't find a Dorito sub no matter how hard I tried. He got super mad and didn't understand why he couldn't have any and it's impossible to explain it to him. He just doesn't get it. I figured the lactose content in them couldn't be that high that it would cause that much digestive upset so we gave him a few...gluten is the real damaging thing after all. Gluten will shorten his life...lactose will just cause him to be bloated for a while. The Doritos didn't really do very much (diaper wise) so we decided since the elimination of casein didn't do anything for him symptom wise this whole time that it would be okay for him to have Doritos again. Now for anyone reading this that works at Aaron's school or babysits Aaron, we are not going hog wild with the casein, I still don't want him to have a crap load of casein, we are making an exception for this one thing because the content is so small. Other than this his diet is unchanged.

Okay here's where it gets awesome....

The day that he started having Doritos again was June 25th. On June 26th Aaron was trying to move a bunch of his hotwheels cars from one room to another. Because he's like me he wants to take them all in one trip instead of making multiple trips and there were just too many cars to do it. He was getting mad and grunting and making all kinds of frustrating sounds, cars were dropping all over the place. I walked up to him and asked him if he needed help and made the ASL sign for help. That's actually what I was trying to show him. He then made the cutest little face and said "help!" Although it sounded like "hoooooh." to try to describe it he's making a round shape with his mouth and sticking his tongue out while he makes that sound. I literally wanted to jump up and down and scream and yell but I had to maintain so I just said "good job saying help buddy...I'll help you." and I helped him. The amazing part about this, is that since this happened, he has consistently used the word "help" over and over again with me, his dad, his big sister, and his therapists when I wasn't there (that part is awesome) without prompting. That is a huge accomplishment for him.

Something has opened up or clicked in his brain. Since that day when he said "help" (keep in mind none of these words are clear but they are definitely what he is trying to say) he has said....hi, bye bye, daddy, Wubbzy, (which he uses daily to ask for Wubbzy the cartoon) egg, two, open...and the most amazing one which I wasn't in the room for unfortunately but "she" was and Daddy was...he tried to say "Kenzie." Kenzie is the name of one of his older sisters. That was amazing.

This same exact day (June 26th) he also started saying "Mama" in a normal tone of voice...before he would scream it at me like he was super pissed and it was a 3 ma sound "mamama." Now he just says it clear as day and it's the one word where it sounds like it's supposed to...also amazing.

He still says all of his little Aaron words...he's a very vocal child..."talking" all day long. His word for blue is "peh." It used to be "pop-pee." Now there is this added bonus that I hope he keeps adding to. Fingers crossed. A good friend of mine who is the speech pathologist at the big school here (our town is small, only one K-12 school and Aaron's preschool) just recently told me she resigned from the big kids school and is going to be at the preschool now (I hope that wasn't a secret.) That means she will be Aaron's speech therapist when school starts again! I am so excited about that!

We are also still working with the autism specialist from Denver who is amazing. We have about 5 more weeks with him. He is teaching us so much about how to help get Aaron talking and coincidentally Aaron started all this chatter about 5 days before our phone sessions with this doctor started. It's almost like divine intervention that all this is happening at the same time because we are getting some great tools that will help encourage him to continue to try and speak.

Three years of nothing! Now if you ask him if he can say something (that's the way we word it..."can you say?") he will try to say it probably 75% of the time. When he doesn't it's usually because he's distracted. When he's irritated I won't even go there and I'm not bombarding him with it because I don't want him to get pissed. We are taking it slow and I didn't even blog about it until now because I was afraid I was going to jinx it, but something is definitely going on in that adorable head of his...Doritos...coincidence?

Doritos are pretty awesome...

Something Stupid Happened Yesterday

Yesterday we had something stupid happen to us that I've read about but has never happened before.
We were FINALLY having our central air installed in our house and the air conditioner installer kept having to go in and out which naturally makes Aaron interested because of the door being open so he was staying close to the action area.
The guy was young and friendly and kept asking Aaron his name and trying to talk to him. At first I didn't say anything about the fact that it would be a one sided conversation, I was trying to feed Roo her lunch so I just stayed out of it, plus the air conditioner was on by this time so I figured he was probably close to being done.
Eventually, he said something to the effect of, he (Aaron) must not be a big talker huh? I figured at this point I would spill the beans, Aaron was, after all, rolling his eyes sideways and back in his head and making some weird noises while flying a truck .0000000001 millimeters from his eyes.
So I said to the guy, "Yeah he's not gonna answer you, he has autism and he's non-verbal."
Before I even got the sentence out of my mouth, he says, "Wow, he doesn't look like he has autism."
I have read about people who have others say this to them all the time about their kids and it has never happened to us.
It's a stupid thing to say...to anyone...about anything.
The people that I've read about will apparently say stuff like back like, "Well you don't look like you're stupid but here we are." Sounds like something I might say but I like to come up with my own stuff.
I could have said something like that and been a bitch about it, but the guy was nice, he clearly didn't know anything about autism, he was trying to be nice to Aaron, and our house has been hotter than crap for the last month and he wasn't quite done with the install yet. So I said, "It doesn't really have a look." That was just what came out of my mouth. I didn't know what else to say.
People say that so much apparently that on the autism support groups people often post pics of their kids with the caption, "This is what autism looks like in my house." It is always just a picture of a beautiful, smiling child.
To be honest it didn't make me mad that he said it, it was just a stupid thing to say. A lot of people say stupid things...about everything....every minute...of every day. There are soooooo many stupid people. Fortunately I don't have to really deal with many stupid people anymore since I quit my old job as a police dispatcher. Some, (I mean they are everywhere after all) but not many compared to before.
I wondered when I would encounter that statement, in what scenario, and what my response would be and now I know.
We shall see what happens next time. If the person is an ass the response may be different. Just sayin... ;)

Recent "Goings On" - The Good and the Bad (mostly good)

I swear I try to keep these short-ish and it never happens....I suppose if I wasn't trying to group the last 6 weeks in to one post then this would be shorter....sheesh.

A lot has been going on lately so technically I could have been posting a lot of different things but because so much has been going on I haven't really had the time or energy at the end of the day to do any of this. I am tired. It is good and bad stuff although, more good than bad. The other reason is my 22 year old daughter got me obsessed with that freaking numbers game 2048 so I can't stop playing that every time I get a chance. Blog? 2048? Yeah...2048 wins...and it wins mostly because I can't win and it's pissing me off. I get sooooo close and I still can't get that stupid 2048 tile...anyway....

Here's the good:
My 22 year old graduated from college cum laude with a degree in psychology! The part of that which is relevant to this blog is that for the first time my husband and I found someone who we trusted to watch Aaron and Roo while we drove almost 3 hours away for the whole day. I think I mentioned her in the post about Roo's 2nd birthday...she is a wonderful friend and an amazing person. It is an extreme rarity that my husband and I are out of the house together without the kids...it's happened less than a handful of times since Roo was born and since Aaron was diagnosed. It was an amazing day. Our oldest daughter was there too (she's 24), she flew out from California, my husband got to meet both of their boyfriends for the first time. They are both awesome guys. I had met one of them already. They are both lucky guys to have girls like ours and we really like both of them.
My mom flew out that morning and was there for the graduation and turned right around and flew home because she had no vacation time left at work. Very sweet of her to do that...that is some crazy traveling all in one day! Almost our whole family was there. I didn't worry one single time the whole day. It was a fantastic day! It wouldn't have been possible without my friend to watch the kids for us. It's a bummer they couldn't come, but such is life with autism, none of us (kids or us) would have had any fun. This way we all had fun. They had a great time with her and then the next day we took the kids back down so they could see their sisters in a more calm environment. Everyone wins that way. It was a lot of driving but it was awesome and we all had a great time.

Aaron is out of school for the year but for the summer he is returning to a play group he was in last summer. It is twice per week in a wellness center about 40 miles from where we live. It is a group for kids with special needs and focuses on social skills. There are some other kids with autism in the group but they all live in that town, none of them live where we do. Aaron really seems to like it as far as I can tell. Roo isn't old enough to be part of it yet unfortunately but I'm glad Aaron still gets to be part of a school type activity during the summer. The drive is no big deal, it's pretty, all highway, and we get to drive by lots of trains on the way there which makes Aaron super happy.

Aaron used an AAC app to try and communicate with me when he had an earache! I paid for and downloaded this thing on to Aaron's iPad a long time ago and recently I showed it to Aaron and he has been playing with it. I wanted him to become familiar with it before I started to work on it with him. Since he can't read yet he needed to know what picture icons said which things. He played with it quite a bit. We were on our way home from the end of the year school zoo trip (which was shockingly uneventful probably because Aaron didn't feel well, he sat in the stroller like a zombie the whole time) and Aaron was grabbing his left ear and screaming every time the pressure in the car changed. It was a long drive, literally and figuratively. The second we got home he walked right over to his iPad, opened his AAC app and started pressing the "it hurts" button over and over again. I mean, I'm sorry he had an ear infection, but that is some amazing shit...there are no other words. It makes me super excited for the future of our communication with one another and just his ability to communicate with the world in general. He's all better now by the way. :)

I'm putting this in the "good" category because this wonderful mother and wonderful friend of mine finally has an answer for her daughter. A classmate of Aaron's was recently diagnosed with autism. She is a fraternal twin, the most adorable thing ever and has so many quirky things in common with Aaron, I just love her. She would have been given an Aspergers diagnosis if some idiot hadn't removed it from play and just grouped it in with the whole autism spectrum. Her mom and I were already friends and now we are even closer because we have this in common. I am glad she has me to talk to and I am so glad to have her to talk to because there are not many who truly understand all this and the shenanigans that go along with it...this is a small town and Aaron was one of a kind until now.

Aaron learned how to sign "I love you" So far he will only do it in return if you do it first but when he does it first some day I think I may lose it...and thank you again to my autism mommy friend for teaching him that. They are buddies.

Aaron has had a couple of impromptu play dates at our house. That is a first. It's not something he would have been okay with prior to this school year but he did great both times. I was super impressed. One of them was with the sweet girl who I mentioned above and her twin sister who Aaron led around by the hand for almost 5 minutes at one point. It was super cute.

Aaron saw the autism specialist yesterday. It was awesome! This guy gets families that fly all the way from England to see him for crying out loud! That is crazy!!! I'll write more in detail about that visit later.

Okay here's the bad:

Roo definitely has Sensory Processing Disorder - the sensory seeking kind, not the avoidance kind like Aaron has...I also believe she has ADD...and she probably unfortunately has autism as well although if she does she is much higher functioning than Aaron. She is being officially evaluated on July 22nd by the same Dr. in Nebraska that diagnosed Aaron. It is rare to have SPD without autism. It does happen though (I have a very good friend who was a bridesmaid in my wedding who has a son with severe SPD and no autism) but since we already have one child with autism the likelihood of having another is much higher especially with the other factors in play like SPD. Plus she still hasn't said a word...not one...it is far past mimicry of Aaron at this point. It's a long story to explain what brought me to all these suspicions/conclusions so I'll do another blog post about that later but that's what's up with her.

The birthday party experience. I did a blog post on this the other day so I won't rehash it. Love you A.M. beyotch...hahahaha.

This was the worst and it ultimately took several days and a million gallons of children's tylenol for Aaron to get back to normal.
I don't know why at the time I just posted this event on my personal Facebook page and not on here as well. Probably because it was 3:45AM and I was exhausted. This is a copy and paste of what I wrote that night. It speaks for itself.

For those that say "autism is a blessing" or "I wouldn't cure him" I would like them to note the time (345AM) and then I would refer them to the past 90 minutes. I am now seated on the floor beside Aaron's bed while he finally sleeps again covered with every blanket I could find as he is shivering so bad. He can't recognize cold (or hot) in his body, and his diaper leaked while he was uncovered, he didn't wake up because body didn't recognize the cold, and his core body temp has clearly gone way down. When he finally woke up he had a huge meltdown (autism version of a panic attack) and all I could do was wrap him in blankets as tight as I could until it was over. He's still shivering off and on now and it's been over an hour but at least he's sleeping again. Autism is not a blessing...it is painful and cruel and I wish it would quit hurting my baby.

(I posted this in comments in the morning...I changed Roo's name but everything else is the same)
So Aaron woke up 5 more times last night...he had the same reaction in f'ing reverse because of all the shivering and blankets and ended up getting overheated and didn't wake up...so he woke up and started vomiting. I finally got him calmed down and got him to drink a ton of water, take some children's Tylenol, and go back to sleep with 1 blanket. It took him forever and 4 more times of waking up to finally cool down to a normal temp and he is now sleeping peacefully. But Roo is awake for the day now! Yay! Caffeine time! I've been awake since 3!

(Later that morning my autism mommy friend brought me a Starbucks Doubleshot Energy drink and now I am addicted to them...damn they are so good)

Sooo that's what's been up lately and I was going to end this blog post here but I have to get on my soap box for a second. I don't care if someone wants to think autism is a blessing. For their family it might be and I think that is wonderful, good for them. But there is a whole group of people numbering in the tens of thousands who live in a world where autism is definitely not a blessing. The problem in the autism community is that there is a TON of infighting. It is out of control. The people with the higher functioning kids don't know what it's like to have a child who is on the severe, lower functioning end of the spectrum such as a child who has problems like Aaron had above, among many others. So when we become overloaded in our lives and get upset and try to reach out for help or vent or God forbid say we would cure our children if we could, those other parents (most but not all, my friend with the autism/Aspergers daughter is certainly not that way) accuse us of being hateful people and bad parents and tell us that we should be ashamed of ourselves for complaining about our wonderful children.
I would never claim to know what their lives are like as they should never claim to know what mine is like. All they see is the "complaining" and not the hurt, pain, etc we are feeling for our precious children and yes, selfishly for ourselves which we are entitled to do as human beings. Venting on a "support group" (I use quotes because there are some judgmental assholes on some of those things) gets us criticism, shame and some people who I saw on one post (not mine) tried to find out where the poster lived so they could report her to CPS because some bitch saw a can of insecticide on her bathroom vanity after the woman posted a photo of how her son destroyed her bathroom (I won't go in to details about that part). All she had done is taken the photo after she had pulled the cleaning products out of the cabinet that is normally locked. That is bs that people would do that to a struggling mother who reached out for help. That is one of the reasons I felt compelled to post what I did the other night. If people saw what Aaron goes through (I don't even know the true scope of it because he is non-verbal and can't tell us), what I go through, what my husband goes through, not what the media wants everyone to see about autism, there would be a lot less judgement on the struggling families, a lot more help among the parents, and maybe even a lot more help in the medical and insurance world. Shit we spent $1800 out of our own pocket yesterday so Aaron could have his autism evaluated/treated for THE FIRST TIME SINCE HIS DIAGNOSIS because insurance doesn't cover autism...at all...
Huffpost parents (who I don't follow but Autism Daddy posted a link to it) recently did an article called "What autism is and what it is not." They asked parents of children with autism to give two statements...What autism is and what it is not. I was reading the posts on their Facebook page before the article was written so there were a lot of them...a lot of people said autism is a blessing...a lot of people said things I would say...and then some woman who wins the dipshit of the year award said this: "Autism is like smelling the spring flowers long before anyone else does." What the F train does that even mean?????

Needless to say I stopped reading after that and never read the finished article...I cannot tolerate people who live with their head in the sand/clouds like that or who say stupid shit like that...I just can't. She is obviously one of those people who turn a blind eye to all the families like mine and autism to her (to quote Phoebe Buffay) is a land "aglow with the light of a million fairies."

I will say though, life is a lot better lately though now that we are settled in our new house and all of Aaron's anxiety over the move is gone. I am hopeful that the recent visit with the autism specialist will make us progress even further.

And lastly, in case I don't say it enough, Aaron is the light of my life. He is the most precious thing on earth to me, he makes me smile constantly, he makes everyone smile....just ask anyone who has met him. It's the reason I had a custom wall decal made and put above his bed with the lyrics from a Martina Mcbride song and I don't even listen to country music but there was never a more perfect saying...the decal says, "And everyone that sees you always wants to know you...And everyone that knows you always has a smile..." It is the truth. In the world of the severely autistic we lucked out because Aaron has a wonderful disposition, he laughs, he is silly, he is affectionate and like I tell him every night at bedtime, he is my best friend. So, in case there was any confusion...severe autism is hard and Aaron absolutely has his autism issues, but Aaron himself is the most wonderful person on earth and I could not imagine my life without him.

Why We Don't Often Go Places

Aaron and Roo were invited to a birthday party this evening. Aaron goes to preschool with the younger sister of the birthday girl. They are both super adorable and their mom is awesome. She is scrappy like me and we both have sailor mouths. I love her.
Not sure what time we arrived exactly but...no joke...we left approximately 5 minutes later. Aaron freaked out the second we got there. He was insisting on my hands covering his ears or the level of his screaming reached epic levels. He wanted to be everywhere but where the party was. Everything we offered him just made him more angry. He was trying to throw giant rocks in the street and was almost hitting people's cars. Nothing was making him happy.
In the mean time Roo, who has her own issues (she's also about to be a main subject in this blog) was stealing people's food and running away with it down the yard which had a slight decline. She's not so good at running downhill so she tripped and fell, did a somersault and started crying...all the while I'm trying to pull a screaming Aaron back in to the party area.
The main mortifying/embarrassing part is that the birthday girl is older than Aaron and all her classmates/friends go to kindergarten and their parents are in that world...they were the guests there. I didn't recognize any of them. I have no idea if any of them know Aaron and that he has severe autism. I know it shouldn't matter to me but it does. It's a horrible feeling to wonder if people are judging you as a parent but worse if they are judging your child. I hope they know him/me, because he is a good kid and just has a rough time in situations like that. At least my friend (the bday girls mom) is awesome and understood we had to leave. Today is the kids grandpa's 80th birthday so we went over there and hung out with him for a bit instead of going straight home. Maybe that's what we should have done in the first place.
I'm supposed to put Aaron in social situations, it's the only way he'll learn to be in them, but I don't know how many more times I can stand to have that scenario happen. Especially if Roo has going on with her what we suspect is going on with her.
One is like one...two is like twenty.

Aaron's Future Communication

I follow a blog called Kreed's World: A Complex Journey Through Autism. It's a blog by a mother of an amazing adorable teenage boy named Kreed who has severe autism and a host of other medical problems. It's heartbreaking what he is going through, but I love to follow the blog because he and his mom touch my heart and I truly care about what happens to them.
Kreed's mother posted a link to something the other day...I'll get in to that in a second. Apparently a while back Kreed had a year of "rage", he was very aggressive and self injurious and because he is non-verbal no one could figure out why. Turns out he was in major pain. Kreed has a very cool AAC device called a DynaVox T10 that he uses to communicate and I'm not sure if it was through this device or another, but by finding and providing Kreed with a means to communicate something so basic, they were finally able to determine the source of his aggression and get him some help.
The link that Kreed's mother posted was to point out how important communication is to the non-verbal child/teenager/adult and if enough isn't done to achieve it something tragic can happen. As she so eloquently stated, "It's one thing for a five year old to hit you and another thing for a 16 year old to hit you."
16? I can't even imagine....

Here's the link to the news story, it's too terrible for me to try to describe:
http://www.theprovince.com/touch/story.html?id=9768605

Aaron's patience is very finite. You can't pile on too much at once or he will want nothing to do with it anymore. We bought him an iPad mini almost a year ago and only about a week ago did he show any interest in it. I have been thinking lately if we had to focus on one thing to make Aaron's life more productive what would it be? After reading this story, I believe it would be getting Aaron to communicate with an AAC device. No matter how hard we have to try. It doesn't have to be too in depth. As long as he can communicate his basic needs I think he will see how good of a thing it is for him and want to learn more. He needs to be able to tell us when he is in pain and he has no way to do that now other than to become very aggressive. A lot of things make him aggressive (hunger, thirst, too hot, too cold, overstimulation, etc) so it's hard to determine what the aggression is from. This especially needs to happen and be in place before puberty sets in.

I would never, ever resort to what this mother in Canada did, but I could never imagine the desperation she must have felt and I can't help but agree with some commenters that if she had been given the support she needed to care for her son things may have turned out differently. I hope they are both at peace now, especially her son.

My husband and I both agree that getting Aaron to communicate with an AAC device is the way to go as far as a main focus. We have to. He is so smart, there is no way he wouldn't pick it up. He learns sign language so easily, learns how to use his iPad apps in seconds, learns his visual schedule and a picture exchange system for asking for things with minimal instruction. I know it would work. If he's too young for it now that's fine, we communicate effectively at this time but in the next couple years I think it is something he could benefit from and the time to introduce it to him is soon. Supposedly one of his therapists is working on looking in to how to get him a device through the school or the state. I haven't heard anything in a while though. If the school can't get one we have applied for something else through the state that there is a long waiting list for that we can also get an AAC device for Aaron this way. These devices are super expensive but I know they are worth it.

Fingers crossed too, it would be really cool if in the future he became good enough at using something like this that we could have our first real conversation. That would be amazing.

Anxious Morning For Me, Good Day For Aaron

Today they did a little mini parade around our town with Aaron's preschool class to celebrate the day of the young child. They were escorted by some police cars and fire trucks. It was pretty cute.

Here was the dilemma I had. When they did a similar thing for Halloween, which was trick or treating at the local businesses, I went along with the kids and Roo, Aaron began freaking out every time the walk stopped for the kids to go inside to get the treat (he has no concept of Halloween) and walks are supposed to just go from point A to point B as far as he's concerned.

My husband and I own the local hardware store in our town and it is on one of the main roads and always on the parade or walking route for the kids. There aren't many places to go where we live so we always go to the same places when we're out with Aaron, grandma and grandpa's house, the park, and the hardware store to see Daddy.

So on Halloween when we walked by the hardware store and Daddy waved hi at us from the front door, Aaron went bat crap crazy. He was sitting in our double stroller with Roo, it's a side by side stroller and he started flailing around so violently that I thought he might injure her if I didn't get him out of there. The issue was obviously that in the past when we go by the hardware store, we stop at the hardware store. We broke the all important routine by doing this Halloween thing, the hardware store wasn't on the trick or treating stop list and when we didn't stop he decided he wasn't having any of that. If memory serves, my husband came out and got Aaron and then I started to cry right there in front of the other parents who I had only known for about a month. I didn't know if any of them knew Aaron had autism, I was worried they would think he was just a brat and that is one of my worst fears because we live in such a small town and he really is a good kid...it was horrible. I have had a lot of experiences like this in the past either because of a change in routine or Aaron being overwhelmed with his environment, and it never gets easier.

Of course everyone at the school knows Aaron and our family now and they all love him and think he is as wonderful as we do. They are all great people.

Anyway on with the story about today...the director of Aaron's school called me last week to tell me about the parade so I would have some advance warning if I wanted to participate or not (very nice of her) and I wrestled with this decision for days...I have had massive anxiety about whether I should participate. I knew if I participated that Aaron would insist on riding in the stroller (which is fine unless he freaks out and starts to flail around), he wouldn't walk with the other kids and that our parade would end at our hardware store. He wouldn't allow us to finish it because....we always stop at the hardware store.

I have a chest cold right now and the last thing I wanted to do today was take a walk anywhere so last night I decided that when it was time for the parade to start, Roo and I would drive to the hardware store and wait there, then when the kids walked by and Aaron had his inevitable freakout, I would just go out and get him. That was the plan.

I thought about it some more this morning and I remembered all the times at school when I was sure that Aaron would just lose his gourd on some field trip that they went on or some project they were going to do and he always seemed to do okay...he still has his issues, but it doesn't end his day like it does when I am there. The common denominator in all of these successful things was the lack of my presence. He gets so distracted by me that he can't pay attention to anything else. It's why I don't volunteer in his class. He needs that time away from me to learn to socialize but to also just be more focused. I am clearly a massive emotional distraction.

I decided to call the school this morning before they left for the parade and told the director that I would be in the hardware store "secret squirrel" style. I said if Aaron freaked out we would come out and get him, but if not, they could just continue on and take him back to school for the rest of the school day.

So there we were, hiding in the hardware store like a bunch of secret agents, I was snapping pictures through the window. There was even a guy who bought a bunch of paint and the last few gallons he had to carry out to his truck without the help of my husband because we didn't want Aaron to see Daddy. He was very understanding though, as most everyone around here is.

My anxiety level all morning could not have been worse on how this was going to play out...I was a basket case of the highest magnitude...and it was all for nothing.

There was Aaron, walking with a teacher holding each hand so he wouldn't bolt (nice that my kid requires 2 out of the not a lot of teachers...sorry other parents...I am glad that they see the potential that he could bolt though). Aaron barely even looked over at the hardware store BOTH times that they walked by. He couldn't have cared less. Clearly taking me out of that equation was the right thing to do and even though I would love to participate in those things with him I am so happy that he got to do that with his class and that it went so well.

When I picked him up from school they also said he did great. He did freak out a little bit when the fire engine turned their sirens on a couple of times to which I say "no sh!#"...the kid does not like loud noises...

All in all a good day for Aaron...an anxious morning for me that ended in a good day because Aaron had a good day.

I Read This Every Day..

This was written in 1927 and I read it every day. I don't remember how I heard about it but I love it and every word in it. The minute you read it you can tell it is older, specifically the paragraph with the words "dull" and "ignorant" and his meaning in that paragraph (those words meant different things in the 20's, I think we all know what I mean...his intentions were obviously pure at the time though so it's all good with me).

I have a metal art print of this hanging next to my bed and I try to read it every day when I get up in the morning. If "circumstances" (we all know what I mean by that) prevent me from reading the whole thing I will always make time to read the last paragraph...it is my favorite part and it is absolutely beautiful. Life doesn't always go as you planned but that doesn't mean it wasn't supposed to happen that way. This is my way of reminding myself to TRY and be "glass half full" because I'm not naturally that way. It's a nice and uplifting read for a special needs parent (or anyone really) so I thought I would share.

Desiderata

Go placidly amid the noise and the haste,

and remember what peace there may be in silence.

As far as possible, without surrender,

be on good terms with all persons.

Speak your truth quietly and clearly, and listen to others,

even to the dull and ignorant; they too have their story.

Avoid loud and aggressive persons;

they are vexatious to the spirit.

If you compare yourself with others,

you may become vain or bitter,

for always there will be

greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your own career however humble;

It is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,

for the world is full of trickery.

But let this not blind you

to what virtue there is;

many persons strive for high ideals,

and everywhere life is full of heroism.

Be yourself.

Especially do not feign affection.

Neither be cynical about love,

for in the face of all aridity and disenchantment,

it is as perennial as the grass.

Take kindly the counsel of the years,

gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune,

but do not distress yourself with dark imaginings.

Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,

be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;

you have a right to be here.

And whether or not it is clear to you,

no doubt the universe is unfolding as it should.

Therefore, be at peace with God, whatever you conceive Him to be.

And whatever your labors and aspirations,

In the noisy confusion of life, keep peace in your soul.

With all its sham, drudgery, and broken dreams, it is still a beautiful world.

Be Cheerful. Strive to be happy.

By Max Ehrmann (1927)

Here's the link to the print I have, it's an original artwork with the poem printed over it. I got a 7"x10" metal print and I love it.

Desiderata Art Print

Today is World Autism Awareness Day - So Here's Me Spreading Awareness

I just want to quickly start off by saying that my intent here is to educate anyone who wants to know about Aaron (just Aaron) and his many, many, many, early glaring signs of autism which are basically most of the signs of classic severe autism as it applies to the majority. I don't mean in any way to imply that this applies to 100% of people with autism when I use the word "they". I can only write what I know based on being a parent of a child with severe non-verbal autism and what I have learned from him and other various outlets. So if anyone with severe autism ever reads this and something I say doesn't apply to you, I mean no offense and again I am just speaking about what applies to Aaron...I SWEAR...

Okay, here we go....

The CDC released the new numbers of those affected with autism and it's now 1 out of every 68 instead of 1 out of 80whatever (I can't recall...still too high, I don't feel like looking it up right now) That is insane. They want to say it's because this was always the number and they are just getting better at diagnosing it. Do I believe this is true? I agree with both sides actually...
There are many adult autistics who were obviously autistic as children and were not diagnosed back in the 70's and 80's, even non-verbal ones.
A large recent study at UC Davis attributed only a very small percentage of the increase in the number diagnosed to increased awareness in the medical community. The rest is an actual increase in new cases caused by some kind of environmental and genetic combination. I agree with this study also.
Aaaand here is where I could spell out all the reasons/debates (vaccines/pollution/pesticides/prenatal infections...blah blah blah) that I believe Aaron has autism...I'm not a scientist. I'm not a doctor. I'm not trying to start a debate. I will not discount anything until it is proven otherwise (except vaccines, I believe they are safe) but I will say the following:

I have been asked all of these questions by various people by the way...and I don't mind, but don't judge me for my answers because you don't walk in my shoes (or pants..get it? ha)... or live in my house with autism...

***SMIIIIIILEY FAAAAACE***

Do I believe that vaccinating Aaron caused or "triggered" his autism?

No. Aaron has showed signs of autism since birth (hindsight is an amazing thing.) I believe it was definitely genetics combined with some sort of environmental factor, it wired his brain differently during his development while I was pregnant. I feel like for Aaron (and now Rachel) it was the perfect storm. I explain that more in detail below (the environment and genetics part.)

Do I believe that vaccinating Aaron made his autism worse?

No. He was always crankier for a couple of weeks after a vaccination but nothing that I would consider alarming and nothing that stopped me from vaccinating him again or vaccinating Rachel. He could have been crankier because he has autism and his body responds differently to anything put in it or around it and it makes him feel uncomfortable whether it is good for him or not...period. His mood always returned to normal after a couple of weeks and he was also the same level of cranky when he was going through a growth spurt so it was barely noticeable because it happened a lot, he's really tall. :) His sudden loss of speech (which was already delayed anyway) did not coincide with a vaccination even a little bit.

I will say this though: Whether or not vaccines have an affect on autism, (and I don't believe they do) anyone who uses this subject to fear monger (specifically the UK Facebook page "Autism Mothers") I have no respect for...if anyone wants details I can give them further in another post but everyone please avoid that page.

Knowing what I know now, even if I suspect it made him worse, would I vaccinate him again or withhold vaccines?

I would do it all again...and this is why...
I would rather Aaron have autism and all of the shitty crap crap crappity sensory things that go with it, than risk him contracting Polio, Measles, Mumps, Rubella, Whooping Cough (which my good friend's elderly mother contracted from an unvaccinated elementary school child here last year and almost died) etc etc etc...all of the diseases that were once eradicated in our country that are making a grand comeback now...I won't say why except briefly above, but we all know why, because what a parent chooses to do for their child is their own choice and I'm not going to judge, just as I would expect/hope that they wouldn't judge me for my choices. Autism won't kill Aaron (unless I, as his mother neglect him and I am not about to do that) but the cooties might and likely would...plus I believe he already had autism anyway and I love him just the way he is...

If there was a cure would you take his autism away?

Yes. I would belly crawl across a football field of Burmese Pythons (I was attacked by a Burmese Python when I was 18 and am deathly afraid of them so that is huge) to be the first in line to take this away from him. When he was first diagnosed I said I wouldn't change him. That was naive and selfish of me. Aaron's level of autism is cruel and painful. Those who say they wouldn't cure their child are most likely on the higher end of the autism spectrum (just my opinion) and their child's symptoms are likely less severe (I say likely because I cannot say for sure, some adults with autism are happy with it but they are likely higher functioning, independent, and employed...the unemployment rate for adults with autism is 90% but I also believe that there are a lot of undiagnosed adults with autism out there so that percentage is likely wrong.) The important thing to remember is that I see Aaron and autism as two separate things. I see autism as something that is attacking my child, not who he is. I think he would be the same wonderful, sweet, funny, silly, huggy/kissy, car truck, train and butterfly (he adores butterflies) loving boy with or without autism. Autism is not the reason his personality is what it is. Saying that would be doing him a disservice. He is who he is because he is just a wonderful person. So yes, I would take it away in a heartbeat. It would be wonderful if I could do that someday and give him a voice and some peace and quiet in his mind and body for a change. :)

I don't see there ever being a "cure" though in the traditional sense of the word because autism is not a disease. His brain is just wired differently. You can't cure something like that. I would like to see some very effective and safe medications and treatments for autism because all they can treat now are the secondary disorders associated with it. There is no medication to treat autism itself.

Lastly, do I blame myself?

No. I can see how some people might blame themselves but I don't. I did everything right while I was pregnant. Everything else is out of my hands and I am smart enough to know that.

Okay here's where I elaborate on the first question...I just didn't want it to go on forever. I have increased maternal and paternal age risk factors (I was in my late 30's when Aaron was born and my husband was in his late 40's) air quality issues (with Aaron, we live in Wyoming now, much cleaner here) a horriffic lung infection in my first trimester (with Aaron.)

I believe autism is genetic (so does science) especially in my family. It's hard to explain so I'm not gonna even try....

For those that want to know (because it is...after all...world autism awareness day) because this is important to know whether you have children or not...you never know when this could affect your or someone you love:

Here are the early signs of autism as they presented in Aaron.

The "as they presented in Aaron" part is important to remember. His behavior was still suspect just not exact to the symptom list on a few points...and as the saying goes... "If you've met one child with autism, you've met one child with autism." True True True...they are all different. However, Aaron is still pretty typical classic autism. I know that all sounds confusing but it's all true...ha.

These are early signs Aaron showed before age 3. This was autism in it's infancy stages, it gradually worse, or more obvious as he got older. I'm really not sure which. It may just be more obvious because his delays become more obvious as he should be able to do more as he gets older. He is very smart though. We just have to provide him the tools to bring those talents to fruition. His sensory issues however have become better in some areas (tactile) and much worse in others (noise.) It's all over the place and changes constantly.

From birth Aaron would not make eye contact...ever. As he grew in to toddlerhood he would look in to the eyes of those he trusted a bit more but never a stranger or anyone he was unfamiliar with.

Every physical milestone was missed by leaps and bounds. Aaron was late to roll over, sit up, sit unassisted, creep, crawl and walk. The first time he crawled was 2 days before his 1st birthday. He didn't walk until 18 months old and that was with intense occupational therapy. He still to this day (he's over 4 now) cannot walk up or down a flight of stairs (this includes flights as short as 2 steps) without doing them one at a time and holding on to a rail. If there isn't a rail he will insist on holding my hand or he will crawl up or down like a toddler.

He can climb in the car (not well) but he can't climb out on his own.

He can't kick a ball (he's very afraid to stand on one leg to make the kick).

He never climbed on anything (furniture, etc.) or tried to go anywhere when he was very young, he would just sit stationary with whatever he was doing at the time.

Aaron is physically able to do most of this (muscles and such) his mind/body connection is not there, his body won't always do what his mind tells it to do so he is TERRIFIED to try for fear he will get hurt (no he cannot tell me this but you can see it all over his face, it's heartbreaking.) That is why he cannot do these things.

A quick note: The typical autistic symptom of the above paragraph is a lacking of any fear and having no sense of danger (Rachel.) Aaron is the polar opposite of this and is the exception to the rule but his behavior is still suspect of autism...this is one of the reasons autism awareness is so important.

His attention span was INSANE. Most babies have an attention span of maybe 5 minutes. We could put Aaron somewhere...anywhere...with a toy he liked, and he would stay there for HOURS just banging one thing in to another. Hours....no joke.

He never did and still never does play "pretend" (he did it once for like 20 minutes and I took like a million pictures...I did a blog post about it.). He doesn't really get it. Example: He loves Lightning McQueen from Cars but doesn't like the movie. Lightning McQueen is a red car and Aaron is obsessed with cars, trucks, trains, anything with wheels and the colors red and blue. Cars don't talk in real life and he knows it so he wants nothing to do with it when he sees Lightning McQueen talking. The 2 talking vehicles on Special Agent Oso (his absolute obsession) have really small mouths and the animals look more "cartoon" than real...that is the only reason I can gather that he is okay with it...plus he's been watching it daily for over half of his life. But really, who knows? He won't watch anything where the talking animals look even remotely realistic or where vehicles are speaking....ever. If I ever need/want him to quickly leave a room I can ironically just put on the movie "Cars." ;-)

He talked"ish" on time but he never put 2 words together and never had a vocabulary larger than about 15 words. He lost all speech abruptly (except the word "ball" for some reason but his use of it is inconsistent) at 18 months old and never got it back. He jabbers all day long and occasionally a sound will sound like a word that corresponds to whatever is happening so people will assume, and they just know for sure that he's said a new word but that is not the case 99% of the time....I don't want to argue with people or make them feel bad so I'll usually just nod and smile when they are certain he has said something...especially when Aaron is standing right there.

Aaron had no concept of the potty or potty training. He still doesn't. I still have to change his diapers (no joke) 15 plus times per day. He will most likely be in diapers for a very long time. A large university study showed that the severely autistic are the most difficult population of humans to potty train. I concur.

Okay, now for the bizarre things that made me want to lock us away in the house forever because I didn't know what the hell was going on...

This part is important....when I say that Aaron "doesn't like something" in these descriptions, most people will say "well, a lot of kids don't like that." (That drives me f'ing batty by the way...just sayin) You need to take what a normal "I don't like that" reaction would be, and times it by eleventy jillion. I'm talking straight up panic, like someone is trying to murder him with a thousand knives. This is the painful and cruel part of autism, these sensory issues that cause pain. They affect all people with autism but in different ways and levels of severity. Aaron is pretty typical autistic though and these issues also happened from birth.

Crowded and/or noisy environments or any place with a lot of fluorescent lights make him very agitated. Some autistic people can hear fluorescent lights, even the mini ones (I can hear them) needless to say there are none of those in my new house.

From infancy Aaron would absolutely lose his mind (remember to times the normal reaction by eleventy jillion which I know isn't a real number but I think it's funny) and by a crowd even a family dinner at grandma and grandpa's house is sometimes too much for him.

Aaron was afraid of toys that moved on their own and/or made sounds, even small ones. He would immediately cry and run away. We either had to remove the batteries if it was a moving toy or if it was a noisy toy I had to shove cotton balls in the speakers and put duct tape (the same color as the toy) over the speaker until the sound was muted enough that he was no longer afraid. During his speech therapy his therapist used to use an iPad and there were certain apps she couldn't use with him because he was scared of the sounds. Some of them were just regular animal sounds. He has, over time, become less afraid of his toys, not all, but most.

Textures on his hands or skin (grass, the icing on his 1st birthday cake, any substance thicker than water but sometimes even water, just to name very few examples, I could name a hundred) he is getting more tolerant as he gets older as far as his hands are concerned though which is nice.

He doesn't like jeans, the material bothers him so all he wears is sweats, I have to cut all the tags out of his clothes, he has to wear seamless socks or he will walk like someone broke his legs. If something bothers his skin even a little bit he will scratch himself raw and be super angry or aggressive until I get it off of him. He doesn't know how to tell us it's bothering him so in the past we wouldn't notice until it was too late and his mood was ruined and he had scratched himself badly. Now we are much more aware of what clothes will bother him and this doesn't happen often if ever.

He has no perception of hot or cold on his skin or hot or cold in his body. He cannot sense hunger or thirst just that he feels uncomfortable and that equals Aaron suddenly being angry or aggressive and then mommy detective trying to determine what it is that will make him feel better. Then I have to force him to eat a few bites until he realizes he is hungry and then he will happily eat the rest of his food.

The meltdown - NOT slang for "very angry" - this is a neurological event that is the equivalent to a pediatric panic attack. It happens when his system is totally overwhelmed. He completely loses it, screaming, crying, total panic of the worst kind imaginable, and the worst part is he hates to be touched or comforted while it's happening. It didn't happen a lot before age 3 and it doesn't happen a lot now. It mostly happens if he gets overheated, too cold or his temperature changes drastically and suddenly or he's in a strong wind for longer than a few minutes, but a lot of things can cause it....

This is still about meltdowns but the following info about "in between" I learned from a brilliant woman with Asperger's named Jennifer McIlwee Myers who I saw speak at a conference about 3 weeks after Aaron was diagnosed with autism. She is a published author and an amazing and hilarious person. I owe her the world for how much I now understand about the way Aaron's mind works. Anyway, she said these kids have no awareness of feeling "in between". They either feel good or they feel bad, that's why their moods change so suddenly. So when they feel bad and then they realize it, a switch gets flipped, and if they feel bad enough they melt down...there's nothing you can do for them but get them to a quiet place away from all stimuli and remove whatever the trigger may have been (lights, noise, people...etc, sometimes it's a guessing game). IT IS NOT A TANTRUM. That is a different thing. It is heartbreaking and I thank God every day that this does not happen to Aaron very often. My husband and I go to great lengths daily to see that it doesn't.

From infancy there were multiple, multiple, daily instances of Aaron hysterically laughing at nothing at any random time of the day whether he was alone or with someone. If Aaron did happen to be with someone, he was not looking at you, he would be looking at a fixed point on the wall or past you. It was sort of creepy, especially at night. I swear I thought we had a ghost in our house at one point that was making funny faces over my shoulder at him.

Textures with food. Aaron likes a lot of foods but the textures of a lot of things bother him so he won't eat them anymore. He was better in the past about food than he is now.

Transitions...he is enjoying himself and suddenly an activity is stopped and he is transitioned in to something else. The world has literally ended as far as he is concerned times a million from a typical child.

Showing me the same thing a MILLION times. A million is only a slight exaggeration. Over and over and over and over and over and over....and over. And if I happen to be trying to walk somewhere when he's showing me something for the billionth time, it's like trying to get in to a speakeasy or something, you can't proceed without the password. I have to say the correct thing (what the toy is "blue car," "Lightning McQueen," or in the case of while I'm typing this, "zookeepers yellow car") or he will literally block my path and hold the toy up in my face until I do.

Any break in a routine. Even the smallest routine that you didn't even mean to make a routine out of in the first place, like the way you cut up a freaking hot dog, or what doors you always leave open or closed on a regular basis in your house. For instance, my husband only has one day off per week. I try to let him sleep in on Sundays and that requires closing our bedroom door which is normally open. Aaron will not have that. He will fiddle with the knob (he is still at 4 not so good with door knobs) until the door is open again and then go about his prior activity. Even in the spring when the weather is super nice we can't go for a walk or to the park every day because that would be making a routine out of it and if it were to rain or be cold and we couldn't go, the day would be ruined...for both of us. The world has ended if these get interrupted and the problem is that sometimes you don't realize something has become a routine until it is too late to change it. Some parents would just call that bad behavior...I would tell them to shove it. There are rules in my house and my kids follow them. Aaron is a good kid. Autism is so much more than behavior and I wish people would accept that and stop being so hyper focused on behavior all the time.

Speaking of hyper focus...Aaron will hyper focus on something. You sometimes have to explode a nuclear weapon next to Aaron's head to get his attention. He literally doesn't hear me say his name, he isn't ignoring me, he is so focused on something he completely tunes out the world around him. I will have to say his name a dozen times (or more) sometimes before he hears me.

Have you ever seen the movie "Toy" with Richard Pryor? If so, remember the scene where he went in the lake and was attacked by piranha? Remember the way his clothes looked when he came out of the water? That's how Aaron's blankets used to look (no joke) from him spending hours in bed at night nervously chewing on them. I still have one just so no one ever calls me a liar or accuses me of exaggerating. I'll post a pic of it at some point when I find it. We finally found the wonderful "sweatshirt blanket" a blanket made from sweatshirt material...a material too thick to chew on. Problem solved except he started chewing on his bed like a beaver. If you've never seen "Toy" you should, it's funny.

"Stimming" this is different for everyone. The classic "stimming" which is the word used to describe the classic hand waving in front of the face/eyes or rocking back and forth which we all associate with autism (or at least I did.) It's stimulatory behavior that helps calm anxiety, nervousness or just creates pleasure in the brain. Aaron has only hand flapped or rocked back and forth on rare occations. Aaron does the majority of his stimming in several different ways. He will drive or fly toy cars and trucks (or other objects) in front of his eyes, very close to his eyes for long periods of time. If we have a news channel on TV or anything with a scrolling bar of words on the bottom of the screen he will put his eyes right up next to it so the words scroll right by his eyes as close as possible. He takes any and all objects and flies them by his eyes all day long. When he is really anxious he will jump on his bed (the only jumping he is not afraid of) and do verbal stimming which is different than his normal jabbering, you can tell that he is "checked out." His sounds are short, high pitched and sing songy. He will do this for excessive amounts of time until his ankles are sore and he is limping. He does this the most when he is anxious. Even though it's comforting for him it pulls him further away from reality the more he does it.

This is a big thing with Aaron:
Aaron cannot decipher angry yelling from enthusiastic praise. It is all equally upsetting to him and will cause hysterical crying. Saying "Yaaaaay!" loud and excited when Aaron has done something wonderful will only succeed in ruining his mood, his day and the universe. This includes things on TV, real people or cartoon. He cannot handle the emotion that comes with the raised voices whether it be happy or sad so he just melts down and cries. Almost every episode of Special Agent Oso or Chuggington make him upset at some point but there's nothing I can do about it except tell him that everyone is okay until he feels better. Before we knew he had autism this was the most confusing thing on earth to me.

Speaking of Special Agent Oso and Chuggington. Obsessions with stuff. Oso used to be all he would watch, ever. Then we found Chuggington. Now we go back and forth. But I can recite them all by heart. If I put anything else on for him he will freak the F out.

Digestive issues!!! Aaron's didn't show up until he was about 2 but I think the stat is something like over 80% of autistic people have some sort of major digestive problem (diarrhea mostly.) Aaron has Celiac disease and also doesn't produce any lactase so he cannot have dairy either.

And lastly (that I can think of) his receptive language skills are very poor. There is a huge lack of understanding of any direction given. Aaron is unable to mentally process things that aren't habit or super familiar to him so he just doesn't understand even the simplest of requests most of the time. For example, I'll ask him to turn on the light and he'll hand me the remote or just walk away.

A quick note about sensory issues. Sensory issues whether or not autism is a factor, are inherited sometimes. That is proven. I have major sensory issues and always have. I can't have any tags in my clothes, my skin is ultra sensitive to texture I will get welts on my skin, I don't like certain textures on my hands, I have to wear seamless socks. I don't even like putting lotion on, I have to wash my hands after because I hate the slimy feeling. I hate a lot of noise that doesn't bother other people. I hate some lighting that doesn't bother other people. It's like I could be writing this about Aaron but it's about myself. This is one of the things I'm talking about when I say genetics. Although if they ever find a link between Downy fabric softener and autism then we will have our answer for autism in my family. Thanks to Aaron and my collective sensory issues on our skin I use about seven thousand gallons of that stuff per week...love it...cannot live without it.

My husband and I were in MASSIVE denial about autism. Even with all of those things he was doing or not doing we just thought he had a speech problem. Can you believe that??? That is shameful. We should have educated ourselves having a young child at the time. Some things are getting better with time with Aaron and some are worse. Would it have been good to know earlier? Probably yes. But in our case had we known earlier that Aaron had autism we never would have planned another baby and we wouldn't have Rachel. So sometimes ignorance and denial are good things! Complicated stuff, hard stuff, but he is an incredible human being and I am so lucky to be his mother.

One last thing I swear!

To those of you in our lives who have taken the time (you know who you are) to educate yourselves about autism because you care about Aaron (and now Rachel) and our family or just because you realize how important this is and that it is largely being ignored by the world...THANK YOU!!!!! We love you all so much.
And to those of you who go out of your way to make my life a little bit easier or put a smile on my face when I'm having a hard day...thank you and I love you! There's a few of you and you also know who you are. I couldn't do any of this without you.

My fingers are gonna fall off...have a great day everybody!

***I added this in to the Facebook comments after someone thanked me for being blunt and honest about this subject so I thought I'd add it to the end here:
"I feel like I have to be blunt and honest. It's mentally healthy for me to get it out, and as much as I love the autism "feel good" stories, and we have some too, there are many more that are on the "darker side" and those are the ones that are not told often enough. I don't know if people think it's depressing or what. People need to know what this is really like or no one will ever do anything about it or acknowledge the epidemic levels of this. I almost feel like it's my job now to create autism awareness to Aaron's end of the autism spectrum because all of the current awareness seems to be at the opposite end and that is not helping families like mine."