Aaron's Future Communication

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

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

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

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

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

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

Anxious Morning For Me, Good Day For Aaron

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I Read This Every Day..

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

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

Desiderata

Go placidly amid the noise and the haste,

and remember what peace there may be in silence.

As far as possible, without surrender,

be on good terms with all persons.

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

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

Avoid loud and aggressive persons;

they are vexatious to the spirit.

If you compare yourself with others,

you may become vain or bitter,

for always there will be

greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your own career however humble;

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

Exercise caution in your business affairs,

for the world is full of trickery.

But let this not blind you

to what virtue there is;

many persons strive for high ideals,

and everywhere life is full of heroism.

Be yourself.

Especially do not feign affection.

Neither be cynical about love,

for in the face of all aridity and disenchantment,

it is as perennial as the grass.

Take kindly the counsel of the years,

gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune,

but do not distress yourself with dark imaginings.

Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,

be gentle with yourself.

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

you have a right to be here.

And whether or not it is clear to you,

no doubt the universe is unfolding as it should.

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

And whatever your labors and aspirations,

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

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

Be Cheerful. Strive to be happy.

By Max Ehrmann (1927)

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

Desiderata Art Print

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

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

Okay, here we go....

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

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

***SMIIIIIILEY FAAAAACE***

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

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

Do I believe that vaccinating Aaron made his autism worse?

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

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

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

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

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

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

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

Lastly, do I blame myself?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One last thing I swear!

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

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

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