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.