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."

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!