Roo's Birthday and the Autism Shenanigans of Birthdays Past

My beautiful baby girl turned 2...we live sort of far away from most of our family and have some good friends here but who wants to come to a 2 year olds birthday party and with all of the stresses in my life I have no time and no patience to plan or execute a birthday party for a 2 year old. I did, however want to make it a special day for her, as free as possible from autism related drama because whether she realizes it or not she gets bombarded with plenty of it every day. As is my method operandi I have to explain in great detail about the past and then I'll get to the main topic of this post. That is how to understand me, and this, and Aaron, and autism...if it's too long, stop reading now....or skip to the end but it won't make sense...just sayin...
We haven't had the best of luck in the past with kid's birthdays....especially my daughter's 1st birthday....but I'll go in order.
Aaron's 1st birthday we had literally just arrived in Wyoming from a 1300 mile move so we were staying with in-laws because we hadn't yet found a place to live in town, so we planned a little party for him. His grandma and grandpa were there (obviously) and one of his older sisters (he has 2 older sisters if I haven't mentioned it before...they were both in college at the time, 1 is now graduated the other graduates this May...yay!!) ....anyway.....when he stuck his hands in his cake his entire body tensed up he threw his hands in the air and had a meltdown. I didn't know what that was at the time. I didn't know or had any idea about anything wrong with Aaron at the time, but he did not like that frosting on his hands. I had no knowledge of sensory processing disorder, autism, neurological disorders, etc...all I knew was one year old kids were supposed to like putting their hands in their cake. Not my kid! His mood was ruined for the rest of the evening. I was a little bothered by it but as with everything else I dismissed it in to the "denial" area of my brain (that is a big-ass area of my brain with unlimited amounts of storage space) and moved on.
On Aaron's 2nd birthday, we went to grandma and grandpa's again for dinner and cake. It was a nice, quiet, uneventful evening. Although we didn't know he had autism (because we had our heads buried in concrete thickness levels of sand) even though he had lost all of his words 6 months earlier...except the word "ball" which he still says every once in a while, I knew this was the only celebration he (and I) could handle. I had become a "go with the flow" parent for this kind of thing. I had always wanted to throw these amazing kids parties with all these decorations and fun things to do but I knew with Aaron that was never going to be possible, I just didn't know why. That birthday wasn't bad but taking Aaron to any kind of family gathering at this point was getting increasingly difficult. The whole "behavior problem" subject was beginning to creep up in conversation with the grandparents (who raised 5 boys, and while they did not understand autism then, they do understand it now so no disrespect to them in anything I ever post...and I will most likely post this sentence again, so sorry in advance for the redundancy) and I knew it wasn't a behavior problem but to repeatedly have to defend myself and Aaron was exhausting. Aaron will do what you ask of him 99% of the time...he just has to understand or be able to get his body to comply...another thing we didn't understand at the time because we didn't know he had autism.
Between Aaron's 2nd and 3rd birthdays our daughter was born.
On Aaron's 3rd birthday he had been diagnosed with autism about 2 weeks prior. The birthday itself was a nice occasion I guess, we probably went to grandma and grandpa's house and had dinner and cake...to be perfectly honest I don't remember one single thing that happened that day....autism had officially taken over my brain and my life.
This is where it gets bad bad bad....to lighten it up slightly this is the point in this blog where I will give my youngest daughter a name. She has one of course but I have been trying to keep it out of the blog. My oldest daughter has affectionately nicknamed her "Roo" quite a long time ago and so we will go with that as her "name" henceforth in the blog.
On Roo's 1st birthday we couldn't do anything really special for her...I don't remember why we couldn't go to grandma and grandpa's house but there was a reason (pregnancy brain does not go away) and looking back it was probably some kind of divine intervention because it was a good thing we were at home. We were "living" (I use that term loosely) in the house from hell at this point and we had been there almost one year (we were only supposed to be there 6 months). We bought her some gifts for her future bedroom once our house was finished but they had to stay in boxes in storage and I was able to make some sub par box mix (say that 4 times fast) cupcakes in the jillion year old oven. We put her in her high chair, gave her a cupcake, she put her hands in it and then we instantly heard Aaron cry from the living room. I went to check what was wrong and he had vomited large amounts of stuff all over the the couch, the carpet, you name it there was puke on it. Keep in mind the top floor...the main living space of this house....was 350 square feet at best and we had crammed our furniture (from our previous much larger house) in it while we were waiting for our current house to be built. It has a basement but it is too dangerous for children, the house is well over 100 years old.
That one moment...the cupcake...the vomiting...set off a 3 month long series of viruses in our house that went from person to person, vomiting, sleepless nights...probably one of the worst times of my life.
Just when we thought everyone was better someone would throw up again a couple days later...and by someone, I mean a child...and it was never on the floor...it was always on the couch (or my bed in the middle of the night). So we had to deep clean the couch cushions and then leave them to dry somewhere and we had nowhere to sit other than the floor...for days at a time...I would try to cover the couch up after it was clean and dry again but it was always that one spot I didn't cover or the one spot the kids would pull away and then barf all over...horrible. And when that new round of vomiting would happen...when I knew it was happening again, that someone was sick again...the feeling of dread that came over me...I can't even explain it. This house was already one of the most uncomfortable places I could have ever imagined putting myself or my family and then add in the constant smell of vomit, no sleep and nowhere to sit except the floor where the dog sleeps so it's covered in dog hair. I kid you not, I lost half the hair on my head after this happened. It would come out in fist fulls in my hands every time I took a shower and my brush was full of hair after just one brushing and the carpet where we had to sit on the floor was also covered in my hair...it was gross. I have sensory issues too. Major ones. I have never felt stress like that. I am not looking for sympathy or anything, I'm just sayin....combine this with the stress of that house from hell, autism, my sensory issues, and just life in general and half my hair is gone now...that's not an exaggeration either. I didn't count each one or anything but it's close to half if I'm making an educated guess. If I can climb out of my half empty glass of insanity there's a silver lining that it's at least uniform throughout my head.
Aaron's 4th birthday was fun for what it can be for him. We can't overstimulate him too much and that's easy to do. We weren't in our house yet (we were 12 days later though) and we got his Celiac diagnosis in that year (2013) so I couldn't make him a gluten and dairy free cake in that ridiculous joke of a kitchen (and no, dairy is not a part of Celiac Disease and no, I don't withhold dairy because of stupid Jenny McCarthy but because Aaron doesn't produce any lactase in his body and he cannot digest lactose...verified by endoscopy and colonoscopy on my then 3 year old child...nightmare) so he had to have gluten and dairy free chocolate chip cookies which he has on a regular basis anyway. He doesn't know how to unwrap presents and doesn't understand the concept of birthdays so I hope he didn't feel like he was missing out on anything...I would hate that, I always want him to feel special. Our house was too small to give him his gifts so we had to wait until we moved in to our new house. We sang him happy birthday and he started to cry because it was overstimulating so I had to yell that we were being too loud so everyone would hear me. He did practice trying to blow out a candle with grandma though and that was super cute.

Okay now for Roo's birthday. She is always having her toys ripped out of her hands, being pushed down (not hard but still it's not nice to be pushed down all the time), sometimes (not always because she is pretty high maintenance too) being put on the back burner (I don't know how to word that without it sounding bad) if Aaron screams or yells because we don't know if it's an emergency or not so we have to run away from her in the middle of playing....she has to put up with a lot unbeknownst to her at this point...but she does and it's unfair although she usually takes it like a champ. It's probably a good thing she is high maintenance herself sometimes...
After the mother f'ing Fukushima level disaster that was her 1st birthday, I wanted her 2nd birthday to be as free from autism drama and general drama as possible, specifically her evening "party". Grandma and grandpa were going to come over after church (they go to an evening mass if that is confusing to the timeline), I baked a cake, Roo is obsessed with stuffed animals and just animals in general so we got her this GIANT stuffed bear and the Fisher Price Little People ABC Zoo. Aaron has a tendency to just pounce on stuff that he wants to investigate further even if it's something he ultimately ends up not wanting to play with no matter who he has to barrel over, so I was in anxiety mode for days about how to give Roo her gifts without Aaron jumping all over them or knocking her down to get to them first. Then I remembered that we had 3 different Christmas presents in our closet that we didn't give him yet because at Christmas we didn't have the space and too much at once for Aaron is literally too much at once. Instant overstimulation, it all just gets thrown around because he doesn't know what to do with too much. We needed to give him something that was so amazing that he wouldn't notice or care what we were doing with Roo and her gifts. Aaron's older sisters got him a Micro Drifters racetrack for Christmas that has the Cars characters...and we all know what that means...love! So I took a big bag that was not see through, put the box inside and snuck down to the basement while my husband occupied Aaron and spent almost an hour putting this insane thing together. This thing rockets cars out of a starting gate at like eleventy jillion miles per hour with this rubber wheel, they go around this track and then under the wheel and they just go and go and go. If the walls of the track weren't there it would blow a Lightning McQueen shaped hole in the front of Aaron's head. It's probably dangerous as hell but it's pretty cool. So, I left it hiding safely in the basement...I hear/watch sooooo much Special Agent Oso I felt like I was completing the "Three Special Steps" and assembling that thing was "Step Two" ("Step One" was getting it to the basement without Aaron seeing it)..."Step Three" would be later, giving it to Aaron at the right time....I don't have a "Paw Pilot" to tell me when to do that.

By the way, I couldn't have done any of this had my husband not taken the day off from our business to be home so I could attempt to prepare for this one hour long evening birthday extravaganza. Just had to throw that out there....thanks honey. :)

When I came upstairs, Aaron began acting aggressive. After some detective work and verbally forcing him to eat a few bites of hot dog, turns out he was hungry and didn't know it, (he doesn't recognize hunger, thirst, hot, cold...etc)...he then happily ate the rest on his own. I was then a tad resentful that I had just spent almost an hour putting together a gift for my son on my daughters birthday so he didn't ruin her birthday and then I came upstairs to that. It wasn't his fault. Just bad timing. I needed batteries for the racetrack so I asked my husband if he could watch Aaron so I could go get some. Really I just wanted a break. I shouldn't be resentful and I felt bad. Normally I would ask my husband to go get stuff like that. I feel weird when I'm not with my kids (that's weird I know). I certainly like my breaks and everything (don't get me wrong) but I usually have to plan them in advance or I get anxiety too...part of the joys of being a special needs parent I suppose, it's hard to just walk away without some advance planning even if it's only for a few minutes. After I got batteries I stopped at a friend's house and that was the best thing I could have done. She cheered me right up, not only does she loooove both of my kids but she wants to know about Aaron and about autism (some of our own family don't "seem" to even care enough to ask or learn about this topic) and she wants to be a good friend and help us be as happy as we can. I love her whole family. She is an amazing person and mother and if divine intervention ever brought a friend in to my life at the right time it was her....in fact I just realized that I met her about a month after Aaron's diagnosis. Coincidence???? I think not.
Anyway back to the topic at hand...

We left the racetrack in the basement until just before we gave Roo her gifts and brought it out for him. Success! He LOVED it!

He loved it so much in fact that he didn't come within 20 feet of our entire celebration for Roo and we were doing that for almost an hour.

And writing that last sentence breaks my heart....It's a sad reality of this life. If one child is to have a wonderful experience that she so rightfully deserves, the other has to be excluded. Aaron had no idea though. He was so happy with his racetrack, he had it sitting on our bed and we put his fav Special Agent Oso on the TV for him. It still makes me sad as a mother though and it always will. Things may change as the kids get older but this is the way it is for now.

After a hilarious debate on Facebook on whether Roo would be afraid of this giant bear (which is easily 3 times bigger than her) I am happy to say she is not afraid of it...to quote me, "I could give this bear a Michael Myers mask and a flaming machete and she would still not be afraid of it. She is not afraid of much." This bear has received about a million hugs and MMA moves so far as well as being a pseudo reclining chair in which to lounge upon while she plays with daddy's phone...she tries to pick it up...oh how she tries. She is such a badass. She is so beautiful and amazing and Aaron is lucky to have her as his little sister. She is lucky to have Aaron as her brother too. Once we can explain his challenges to her she is going to be his biggest cheerleader. Yeah he pushes her a lot, but she is ALWAYS taking his stuff. He just assumes that when she turns in his general direction that is what she is enroute to do so he just beats her to the punch. He also randomly walks up and gives her hugs. Not a lot, but it does happen and he is always smiling when he does it. He gets her chair for her at lunchtime without me asking him. If she throws her food on the floor he picks it up for her (I had to stop feeding her gluten filled things at lunch because of this, he isn't allowed to touch anything with gluten in it, but I don't want to discourage him helping her). I know he loves her. When we pick him up from school and I set her down and all the preschoolers are all over her petting her hair and stuff he gets ultra possessive and wants to beat down everyone until they back away from her. It's adorable. That's big brother shit and I love it.

Happy Birthday "Roo", we love you!!!!

I Am Officially Impressed....

I contacted an autism specialist yesterday via email.

I have been thinking about how weird/crappy it is that they give families an autism diagnosis (an incredibly complex thing) and then just basically kick you out the door and expect you to pretty much figure it all out on your own after that. Aaron is a vastly different child than when he was originally diagnosed. We didn't know the severity of his speech problem at the time, we thought his autism severity level was a lot less than it actually is, and we knew nothing about autism in general. When the original doctor asked me "Do you have any questions?" all I could think to ask was, "What exactly is autism?" I was so relieved to finally have a diagnosis...an answer to this awful mystery...I couldn't think of anything else to ask.

My questions now would be wildly different... I know a lot about autism now, I know a lot about my child as it relates to autism now...but autism is rearing its ugly head more and more lately and pushing aside my sweet, funny baby boy...our lives are all getting more stressful. I want us all to be happy...especially Aaron.

I asked my husband recently what he thought about having Aaron reevaluated by an autism specialist. At the very least we would get an up to date diagnosis (the diagnosis won't change but the status or severity of some things will and that is important), some practical advice specific to Aaron...because every single person with autism is different so most advice from books/internet is so general it's not helpful...and I would not be a complete moron during all these appointments like I was the first time.
I do not want to talk to anyone (doctor) unless they know about autism more than just a fleeting class in medical school. I want an expert. Having to explain this to people over and over again gets so tedious and frankly it's impossible to explain, it makes me want to punch myself in the face.

We live in a very rural area in Wyoming. There are not any autism specialists in Wyoming. I couldn't even get Aaron diagnosed in Wyoming, I had to take him to Nebraska. My husband and I are originally from Denver and we have family and many friends there so I figured I would look there. I found the Rocky Mountain Autism Center. The doctor there is a published author, very well respected, and has been working exclusively with autism for 35 years. I emailed his office yesterday and asked if he would be willing to see us. I said I knew that we geographically couldn't take advantage of any of the therapies that they offer there but I wanted my son to be seen again now that he was a little older.

I assumed I would get an email back from an office assistant or someone similar advising me to get a doctor referral and then to fill out some paperwork and they would get back to me or something like that. That is not what happened at all.

This morning, only about 18 hours after I sent my original email, the doctor called me himself on the phone and talked to me for almost 45 minutes! He was one of the nicest people EVER!! He said he looks forward to opportunities where he can assist rural families like mine who don't have access to all the resources that a big city offers. He wants very much to meet Aaron and our family and do whatever he can to help us help Aaron.

As usual I have no high expectations, but I don't see how we wouldn't walk away from this without some useful information specific to Aaron and that is all I really wanted in the first place. Color me impressed....

Evenings With Autism

The reason I titled this post "Evenings With Autism" vs. "Evenings With Aaron" is because we don't typically get to spend evenings with Aaron. Autism in all it's shitty glory takes him over in the evenings...so in the spirit of venting/catharsis/stress relief/autism awareness blah blah blah...but not venting specifically about Aaron...I will vent etc. about autism.

Daddy gets home from work around 510PM. Up to that point in the afternoon my daughter is napping and Aaron is watching Special Agent Oso which he does while she naps...we call that "quiet time". We had to stop giving Aaron naps because the waking process (either us waking him or him waking on his own) ALWAYS resulted in a meltdown...not slang meltdown, oh someone made me angry ...autism meltdown... (panic/crying/screaming/inconsolable)/superfun!!), and it would take hours upon hours to get him calmed down. This was a daily thing and it was f'ing ridiculous, something in his brain does not respond well to napping. Unfortunately it took months and months of this daily torture on my precious child for me to figure that out and eliminate naps. The lesser of 2 evils became "quiet time". Aaron is shown a picture on his visual schedule of some woman with her finger to her lips "shooshing" you in to silence...and he is told that his sister is sleeping and he must either play quietly or watch TV until she wakes up although this rarely changes his level of noise....whatever, I try, she has a white noise machine while she's sleeping. The down side of "quiet time" vs. napping is that he is especially tired in the evenings.
Since he is already neurologically challenged thanks to autism, adding exhaustion to the mix adds more autism related behavior to the mix and ultimately changes Aaron's personality for the remainder of the evening.
It really starts off when Daddy gets home. We have *accidentally* created a routine of sliding Aaron across our dining room floor multiple times and then he gets chased around and tickled for about 5 minutes. We did it enough times that it became a routine and if we don't do it every single day we get about 3 hours of whiny sounds (love those annoying noises out of my non-verbal child) and American Sign Language harassment on an Everest level scale. Distractions only work for a short time. My husband recently hurt his wrist and still had to slide Aaron across the floor a bunch of times. That is not an easy task when you are impaired on one side. He simply doesn't understand that Daddy hurt himself, he doesn't understand the concept of injury he's never really injured himself...I don't know whether that is a blessing or a curse at this point...at least a past injury could have been a learning experience (lemonade out of lemons?? ha). I would do the sliding but since I have severe migraines almost every freakin day I can only do it when my head doesn't hurt or my head will literally explode all over my pretty new house...try explaining that injury to Aaron. Plus Daddy can slide him farther and faster so Daddy is better.
Now here is the part where some people would say "discipline more" "just say no" blah blah blah...and those people know nothing about autism and when I try to explain, they just don't get it and then I want to smack them. Autistic people at any age are all about routines. In the same way we make brushing teeth a routine and expect Aaron to be okay with brushing his teeth every single day at the exact same time...the reasons why are irrelevant to him (cavities/dentures/root canals/things he will never comprehend) this routine is the exact same thing as far as he is concerned. All routines are important to him, regardless of the reasons for them. His reasons for doing something are equally important as our unknown reason for wanting him to do something. Routine, routine, routine. Aaron doesn't like brushing his teeth, but if I am being lazy and try to not do it one night he will get pissed about it. If that doesn't prove the importance of routines, nothing will.
Okay now on to the personality change. This would happen anyway every day because Aaron is only 4 and has autism and is not napping, but the sliding/tickling speeds up the process for sure. We are overloading his system with stimuli and he will become overstimulated just like an infant (one of the perks of autism). When the tickling time is winding down for us, it is because Aaron is practically hyperventilating. He is like a wind up toy that you could wind up for infinity. At a certain point we decide that Aaron is just waaaaaay too wound up and we have to halt the shenanigans. We do a "3 more times, 2 more, 1 more" thing with him so he isn't just cut off...just cutting him off is the worst thing we could do. That would be like taking me in to Disneyland and 5 minutes in to it someone coming up and saying "Okay that's all for today! Get the F out!!"
He is usually upset after "1 more time" that the fun is over and has to be directed to go play with his trucks or he will just throw himself around on the floor or palm smack the windows a bunch of times. When he does finally go and play, it is usually with some aggression. He slams his cars and trucks around, his sign language signs are more exaggerated in gestures out of annoyance, he randomly walks up and pushes his sister for no reason even when she isn't trying to take his stuff, he interacts with us less on a "play" scale, stims more physically and verbally, I am definitely not allowed to sit down at all...it fills him with anxiety for some reason and he freaks out so I get to stand up until bedtime (good times), and he takes less pleasure in things he likes, he just goes from thing to thing and barely interacts with anything for longer than a few minutes which is abnormal for him. The worst thing though is the look in his eyes. He looks different, like he is just plain angry and he isn't the same Aaron. He is autism...it takes over. He very often is just "in space" checked out from reality. If Aaron reappears for any length of time it is usually short and it isn't hard for him to slide back in to his autism land.
The part I feel the worst about is that after the fun sliding/tickling time this is the Aaron that his dad gets to see most often. It's not really fair to either of them. Some might say regardless of how long it takes to break that sliding/tickling routine just break it. Yeah...I could do that after about 167 days of hyperventilating Aaron repeatedly signing the words "more please" for 3 hours every night until his knuckles bleed while I repeat the word "no" until we are all in straight jackets...and then guess what? He ends up in this mood anyway because he is 4 years old and he is just tired and autism kicks his ass, especially at the end of the day. Or we could give Aaron and Daddy this daily gift of bonding and laughter because they don't get very much quality time together. As much stress as it causes me personally, I vote for the latter.
When Aaron goes to bed I stand at his bedside...he is usually far off in space by this time...he is softly verbal stimming and I ask him to look at me. Sometimes he will sometimes he won't. The best feeling in the world is when he will and I can make this brief connection. I try not to even blink because when he does look at me it is fast and I have a limited window to get this out. I smile as big as I can and tell him "I love you, you're my best friend." I've said that to him every night since he was born. If he is still looking at me he will briefly smile back at me. Best. Feeling. Ever. I choose to believe that is his way of saying "I love you too."
So that is what evenings with autism are like.

I'm hungry!!!!!!!!

I'm having a life insurance exam this evening and they have to do a fasting blood draw. The woman was originally supposed to be here at 530PM and I was instructed to fast for 6 hours prior...then at 2PM I call her to ask if it's okay if I take some Excedrin because I'm getting a migraine. Then she tells me she can't be here until 645PM. I ate breakfast at 930 this morning. I wasn't hungry at 1130 (fasting time) so I didn't force myself to eat anything just for the sake of eating. The 645 info would have been nice to know while I was still outside of that 6 hour window because apparently she knew a long time before I called her. She wants me to die...

Oh and to add insult to injury I'm only doing this (I already have life insurance) because my in-laws tried to do something nice and buy Aaron and my youngest daughter life insurance policies and Aaron was denied because he has Autism. Nice huh? So I'm getting this policy that can be signed over to him when he turns 18. WTF....ugh I'm hungry...

Oscars + Aaron = "Happy"

"Happy" I don't think there was ever a more appropriately named song....

I have been trying to get Aaron to connect to music or any song for a while now. He will "dance" (bounce up and down, it's pretty cute) for about 30 seconds intermittently to the theme song of his favorite cartoon(s) but that's about it.  I don't often listen to a lot of music...I love music but it makes me too emotional...all music and almost all of the time. So basically I just avoid it unless I'm in the car for a long time but even then it's my own specific playlist or I usually just listen to movies or TV shows. I have been trying to put on more music lately though for Aaron since I read some stories about autistic kids that have had some pretty amazing reactions to music or specific songs. I didn't have any particular expectations but I learned something about the brain that was interesting so I figured it couldn't hurt to try.
I recently learned that the ability to voice words through regular speech and words through song come from different parts of the brain. It's why some people with significant speech impediments can sing without a problem, even speech disorders such as Apraxia which is what Aaron is believed to have. Some non-verbal autistic children have been known to just break out in song...there was a story recently about a non-verbal boy with autism who just started singing Katy Perry's "Roar" to the extreme delight of his parents...I believe the YouTube video of that went viral.
Aaron has not liked any music to this point but I have still been exposing it to him seeing if he will take an interest. Generally if I talk to him about something being for him or try to show him something, the less he wants to do with it, so when I put on music I just usually silently observe from the sidelines and see if he shows an interest.
This whole time he couldn't have cared less until he heard/saw Pharrell Williams perform "Happy" on The Oscars. I watched it by myself last night after the kids were in bed. This morning I finished watching the show, I was about to delete it, and then I remembered hearing part of that song on a commercial I had seen recently and that Aaron had glanced at the TV and had obviously taken notice while it was on...I remembered at the time making a mental note that he might like that song and that I should download it. Plus I like it...it's a really good song.
I decided to play it one time before I deleted The Oscars off the DVR and see what happened. Aaron went bananas (Despicable Me pun intended) ... He was in my bedroom when I pushed play, he came flying out and stared at the TV with a huge smile for the first few seconds, then he started running laps around the living room and laughing hysterically. I had to turn the volume up because we couldn't even hear it any more. Every time it ended he signed "more please" and wanted to see it again and again. My DVR is forever going to have 3 1/2 hours taken up for this 3 minute performance because while Aaron did not sing anything he has made me replay that performance no less than 30 times...and that is just today!!!! I will never be allowed to delete that recording. If I ever do have to delete it, I at least have the song downloaded now and I believe I can probably find that performance on YouTube. I am hoping that the E! Network will play an encore of The Oscars so I can just record that performance and free up the space from the rest of the program. I think I may try some more of Pharrell Williams' songs because I bet Aaron will like them. I think I will too!
So I will wholeheartedly agree with what one of my sisters said on Facebook last night...best Oscars ever!