AAC Device for Aaron…We’re halfway there!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until the Nacho Cheese Dorito.

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

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

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

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

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

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

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

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

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

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

Doritos are pretty awesome...

Something Stupid Happened Yesterday

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

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

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

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

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

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

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

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

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

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

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

Okay here's the bad:

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

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

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

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

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

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

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

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

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

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

Why We Don't Often Go Places

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

Aaron's Future Communication

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

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

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

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

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

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

Anxious Morning For Me, Good Day For Aaron

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

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

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

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

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

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

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

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

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

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

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

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

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

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