She Didn't Cry

I'm referring to when our son was diagnosed with autism. She was kind of happy, we both were. We finally had an idea about what was going on, and we were connected to services we could get for him, so his quality of life would improve.

My wife has taken the brunt of the whirlwind that happened after diagnosis. Enrolling the big guy in ABA, speech, and occupational therapy, setting the big guy up to go to school, and then running him around between everything he had to do during the day. She would wake up at 7 am, get him ready for school, whether he was grumpy or not, and get him there by 7:30, then take care of the little guy until it was time to get the big guy from school.

Then it was off to ABA therapy or speech and occupational therapy, or maybe it was a meeting with the lady from the office that helped coordinate things, or a WIC appointment. Then back home and time to rest, if he wasn't sick. One of the things that sucked about him going to school was the first year he was sick almost all the time. There were days she would drive 100 miles during one day, just to get him to his appointments, and still make time for the little guy.

Once the daily appointments were over and she was finally home, it was time to try to get fed and ready for bed, which was an ordeal, itself. Most nights she had to sit in the room with him, and keep having him lay down until he finally fell asleep. Then she might have some time to herself to watch a movie or play on the computer, but that wouldn't last long because she almost always fell asleep watching a movie, without taking her contacts out.

Honestly, she’s the strongest person I have met, and I don't mean just physically. I praise everything she does, and I don't see her braking down any time soon.

I know she worries about him, but I also know he gets on her nerves at times, but what kid doesn't. It has gotten easier, and she has had help from others over the years, but she is still the one doing more than anyone else. I wonder how she feels about things most times, if she feels overwhelmed, or stressed, most of the time when I ask her she won’t tell me, or she just says she’s "fine" and that things don't bother her, but I know she wants time alone, and I have given it to her on many occasions.

Sometimes on the weekend she's sent home from work early, because they don't have enough business, and it's not just her, many times everyone is sent home or put on an off the clock two hour break, but she doesn't come home for two reasons. One reason is she wants time alone, and I don't blame her because sometimes you just need to breathe. The other reason is if the big guy sees her, she wouldn't have the ability to leave again and go back to work, he would have a meltdown.

She’s a great woman, I wish you could see her smile, and hear her laugh. I love the fact the she can smile, can have a good time, and still laughs at things. She’s not devastated by the diagnosis, or hurt by it; she loves him with all her heart, and will do everything in her power to help him. I don't think any of us think of this as a bad thing, I think this has given us clarity and focus, her most of all.

It will get easier, especially when he starts talking and telling us his ideas, concerns and needs. It will also get easier as he gets older and no longer needs as much therapy, though I know he will miss the speech lady when she stops coming. I bet mom will even find that she has become bored when he’s more independent, by she will find something to fill the time, trust me.

I cannot see anyone doing better for him that she has, ever. She is the best, and I love her so much for that.

The Little Guy & Fears

I named this Blog Our Life of Autism because I didn't want to just talk about my son and his travels with autism, I also wanted to post about the effect it has on different members of the family. So with this post I will start with the youngest member of the family, and over the next few day work my way up.

I think the little guy does pretty well when it comes to his older brother’s autism, but I know it affects him. The little guy gets more pinches, smacks, and "magneto claws" than anyone else. The little guy will often get hit only because he is standing closer than the big guy, or maybe because he is smaller than mom and I.

I still think the little guy does great about dealing with his brothers autism, even though he is only three (almost four) years old. Sometimes he will egg the big guy one or we will have to tell the little guy to leave the room, or come over to one of us to leave the big guys alone. I have had to take the little guy out of the big guys’ room just to keep things sane. I know mom has had to do some of the same things.

The thing that worries me most is how the little guy will look at his brother when he gets older, and how their relationship will develop.

I have fears that the little guy will become resentful of his big brother because he is treated differently, even if he knows that his brother is different and sometimes the same rules won’t apply. I have a fear that the little guy will grow to hate his brother because of his meltdowns and attacks, and will then treat his brother worse during his adult life. I have a fear that the little guy will think his mother and I do not love him as much, because we don't make special dinners for him, or because his big brother receives a different type of treatment from us. I have a really huge fear that the little guy will treat his brother one way at home, in front of the family, and differently when they are in school.

I think the school thing would break my heart the most. I know when my brother and I were in school we were horrible to each other. I would hate to think of the little guy treating the big guy good at home, and then making fun of him at school in front of all his friends, just to look cool.

I know we can do our best to teach our son tolerance, acceptance, and respect for others, but.....honestly, are you absolutely sure you know how your kids act towards others at school when you’re not around, ESPECIALLY when they want to look cool?

I know the little guy is intelligent, and I know he gets what's going on; I just hope that he keeps that understanding. I know it's hard for him, especially when he wants to do something, and we can't because the big guy is having a meltdown, or when he wants to watch something but the big guy doesn't because it’s not trains.

I guess all I can do is the best I can do, and leave the rest up to God.

Pancakes!!!

So the big guy isn't really that thrilled about pancakes. Waffles he will eat, among other things, but he usually has nothing to do with pancakes.

Yesterday we had a family day out in Dallas. We went to the Dallas World Aquarium and had a blast. We also went to a mall and let momma do some window shopping while me and the guys sat and played in their little play area. The big guy also had a meltdown about a train he could ride that they had on the second floor, but it was all good. Anyway, on our way home we stopped at In-And-Out got some burgers and fries, and the big guy didn't want anything to eat. He only wanted his soda to drink, and that's ok, we can't make him hungry.

So the boys fell asleep on the way back home in the back seat. Mom and I had a nice drive back with good conversation keeping us company. So we got home about an hour later, and the boys woke up, well the big guy did anyway. So we put the little guy down, and let the big guys run around and watch TV with us. I fell asleep on the recliner for a quick 30 minutes nap, and at about 8 the little guy was back up, and we were trying to get the big guy down for the night, and that is hard sometimes.

Mom and I have wanted to watch the movie Temple Grandin for a while now, and we were going to sit and watch it that night, and trust me, if you haven't seen it, watch it. It is about someone with Autism, and how she went to college and.... well, it's good.

Well the big guy keeps coming out of his, different things each time, change my pull-up, start a movie for me, I need you to have this truck, you know, the normal stuff.

I know he didn't want to go to sleep because he had that nap on the car ride home, but then he has this "idea" and he's trying to get me to go into the kitchen for something. The reason I say "idea" is when he has something he wants one of us to do for him, and trying to be sneaky at the same time, he will do this thing to convey the idea that he has an "idea".

The best way to explain it is an old silent movie. When an actor in a silent movie is thinking, he strikes a certain pose; arms kind of crossed, and his right hand up at his chin, with his thumb on one side, and his index finger on the other. Once the actor figures out what "to do" ha has a "idea", and to show that he has an idea, the actor will make a kind of bouncing movement while at the same time his right hand will leave his chin, and his index finger will go up, like "Eureka!! I've got it" type thing. This gives you an idea about how he thinks; he has a visual representation in his mind to convey the fact that he has an idea.

So......anyway, back to the story...

So he has his idea, and wants me to go to the kitchen to make pancakes, and that's mom's department. So we get everything ready, heat up the griddle, mix the batter with water, get the plates ready....and cook pancakes at 10 o'clock at night. It was awesome, the whole family cooking pancakes in the kitchen, it was fun.

The reason I bring this up, even though we did so many other things that day, is because we had pancakes for dinner the night before, and he was adamant that he did not want any, and he usually does not eat pancakes.

We went back out into the living room, he ate two big pancakes, and sat with me and the little guy on the couch (mom was on the love seat, so I got all the loving) and we finished watching Temple Grandin, which he was totally enthralled with.

I'm not sure why he wanted pancakes, like I said he usually doesn't eat them, but that night he did want to eat them. He also gobbled them up like there was no tomorrow. I'm also pretty sure he will want them almost exclusively for a while because that's usually what he does with a type of food, he will stick to it and only eat that for a large period of time and it may be the only thing he wants to eat for a while, but that story is a whole post in and of its self.

School?

Yup, he loves it.

He loves his teacher, the helpers, and his friends at school. He has an inclusion class, which is where he goes to another class that is not for children with developmental disabilities, and we hear that he does just as good in that class as his normal class.

School has helped my son become more social, use words more often, improve at his fine motor skills and I'm sure many other things I'm just not thinking of right now. I told his teacher about this blog, and explained that it was about the whole family's experiences dealing with the big guy's autism. After a few days she had finally had a chance to take a look at it, and the next time I was able to talk to her about it, she was laughing.

She said "That's nothing like the kid we know" referencing the post I made about meltdowns. This is something I have heard from many people about children with autism; they are totally different in different situations.

The big guy acts differently with the speech lady than with me, and differently at school than at home, and differently with mom than everyone else. I kind of have an idea about why also.

When you or I go to a supermarket, we expect certain things like the grocery carts in a rack by the front door, the deli area in the back, one side of the store dedicated to fresh fruit and vegetables. When we go to a movie we expect certain things, to buy a ticket at one spot, and popcorn and drinks in another area, then the place we watch the movie in the back. We all expect things to be a certain way, even when they are a little different, they are similar enough we can adjust.

The big guy has to have things a certain way in all aspects of life, at home, school, and really everywhere. Changes are hard for him to deal with, unless change is a normal part of a setting. I know the school has a routine; the only difference is they will do different things during a day. So in a way, he has changes to deal with at school, but the "routine" is much the same. They have lunch and recess at a certain time and naptime is also at a certain time, the difference is what they do during the time in-between.

I think this is one of the reasons he loves school so much, he has a routine, but there are differences in what is done during the routine. The differences keep everything fresh and fun for him and I think this is why he loves school so much, that and his teacher.

String

People take many things for granted, and I think as we age we see less wonder in the world, like the magic is gone after we find Santa Clause isn't real, and we become jaded to the simple pleasures in life.

Like string.

Remember when you were a kid and some of the simple things you found around the house the most fun things to play with. An empty paper towel roll, a cardboard box, the laundry basket (with and without clothes in it), dad's shoes..... Mom’s shoes for that matter. All these things are so amazing as we are growing up, but we forget how much fun they are.

Well, the big guy has this thing from string. It's like the most awesome thing in the world to him. He can find a piece of string in the middle of a snow storm, and play with right up till the rescue party comes. You give him a string, and you give him the world. He has a fishing pole, a dog leash, or a whip. He will twirl it in the air, like it’s a flag, or set it down on the floor like it’s a worm.

He does this funny thing about anything that smells, he will sniff it, then wave his hand in front of his nose and say "eeeww", very cute.

The other day he had a string, where he found it I will never know, and he was running around with it. At some point I thought it would be funny to do the "stinky" thing to the string, so I had him come over to me, I smelled the string, waved my nose in front of my face, and said "eeeww" and he looked at me like I was crazy....then ran away using his string as a kite.

If only everyone were so easily able to have fun with such simple objects like that.....

Resolution

The title of this post has nothing to do with making a new year’s resolution, so don't think I'm about to talk about losing weight, eat better, or paint or something. I really want to explain to you about how the big guy needs resolution in things for everything to be OK.

I mostly want to talk about TV shows and movies because this is where I see, more often than not, how "into" something he can get. I think as he gets older the same thing will happen to him with video games or things at school, but for now I can really only comment on TV and movies.

I have sat and watched a number of different cartoons and movies with him, and I am so amazed how involved he becomes with the story. He gets so involved you can see it in his eyes, body language, and the way he acts towards everyone else in the family. As an example, a few weeks ago we first watched the movie Zathura, which is a really awesome movie and if you haven't seen it do so. The story is about three kids visiting their dad on his designated weekend, and how dysfunctional the family is, but not all scary psycho like, just how self-absorbed they all are mostly due to the situation.

So the two main characters, two small kids aged five and somewhere around eight or ten, find a board game in the basement that turns out to be much more than just a game.

At one point the house is out in space and about to be boarded by Zorgons (ether watch the movie or read the plot on Wikipedia and you'll get it) a huge lizard like race. The first time I watched this with him (and the little guy) he was very stressed out, he had his hands to his ears, hiding behind the recliner, and now and then he would jump up and down or stomp.

Now the big guy would not be able to leave the movie at that point. It's not very scary, but just enough scary, but he cannot leave or stop watching the movie, he must have a resolution.

There is also a robot scene in the movie where he does much the same thing, and once again, he needs the resolution. Later in the movie he does get resolution, on both issues, but I cannot stop the movie, or it will be a very bad thing.

He will get mad and have a fit, attack, tell me "no", or even have a meltdown, so we must make a decision before he watches something whether or not it is something suitable for him because he mimics what he sees in a movie. So he cannot watch something like Reel Steel because it is about boxing, and he will hit. He will hit the little guy, mom, the dog or I, because he thinks it is OK to do things like that. I'll make a whole post about mimicking later, but for now just know he must have resolution in something he watches.

So we must be careful when he watches things, because he must have resolution. We can't put a two hour movie on 20 minutes before he goes to bed, or he will have a huge problem if we turn it off. He won’t have a problem with the fact that it is bedtime, but because he has to see what happens next, he must know that the Smurfs will get home.

 So all I have to say is... thank GOD for commercials. Commercials allow us to turn the TV off so we can get him ready for bed, and because it is a commercial, it's no big deal, the resolution happens very quickly, and many times he doesn't pay attention to commercials. I don't know if other children with autism are like this, but with the little guy, we can turn anything off at any time and it isn't as big a deal. The little guy may get mad and cry, but he won’t have as much of a problem with it as the big guy.

Meltdowns

I want you to understand what I mean by a meltdown before I get into what I have to say about them.

Most children will throw a fit, pout; test his or her parents to see how far they will have to go to get what they want. Autistic children are a bit different, and the type of behavior they exhibit is what we parents of autistics call meltdowns.

One of the main differences is the severity, and length of time a meltdown can take, though it does not stop there. Autistic children (at least in my experience) really do throw a fit. They will scratch, scream, kick, attack (you think I'm joking about that, but I'm not) and nothing in the world, and I do mean nothing; will make things better, or even just OK.

Now I know what you’re thinking, your saying to yourself "well, my kid does all of those things", and this may very well be true, but if you leave the room I will bet you five bucks (not the animal) that your child will calm somewhat, maybe even forget why he or she is mad, or even settle down and go on to something else, but the big guy wont.

A meltdown can last from a few minutes all the way up to three hours or more, and again, there is nothing you can do to change this. You may think I'm joking about the time-frame, but I'm really not, the big guy had a meltdown today that lasted from about two forty-five till about four thirty. Even after he had calmed down a bit he would still rear up and attack the little guy, mom or myself. Happily he didn't go after the dog, though he has on occasion.

Another aspect of a meltdown that is different than other children you cannot appease the demon once it has reared its head. Things like ice cream can snap a normal child out of it, or his or her favorite toy, maybe even a cartoon or a "go outside and play" will appease an angry kid, and this is not true with autism. Nothing works, we just have to let him get it out and wait for him to calm down. This is what we did today.

Mom got off of work early because it was a very slow day, and the big guy, little guy, and I were at her place of business when this happened. So mom and I asked them what they wanted to do, so the little guy said he wanted to go to McD's. This is something we do often, but not for the reasons you may think, we mostly go for the play place, many times, we might not even order anything, we just let them run and play. This is really helpful when the weather is bad out because the playground is enclosed, and we can easily watch the doors.

So we started to head on over, and that's when it started. The little guy's birthday is coming up, and mom had a few toys in the back of her truck for his birthday. At some point the big guy had seen them, maybe when he was going to school in the morning, or the day before, that's not the point, the point is he knew the toys were back there. I know he knew beforehand because he went straight to her tailgate and tried to get me to open it. I just said "no, we got to get going" and went to put him in his car seat. Well he squirmed over the back seat to get to the toys, and when I grabbed him to put him in his seat, he started.

He told me "no" and started scratching, kicking, screaming and crying, doing anything he could to get the toys. We got to where we were going, and when he got out of the car he did not care where we were, he just went straight to the back of the truck to get the toys. When we told him "no" he sat down in the parking lot and proceeded to scream. To make a very long story short, we never even made it inside, and this really made the little guy upset because he really wanted to go inside and play.

Well, what we did do is go home and just let him work it out, but the little guy was also super mad, so now we have two really crappy kids who do not want to do anything. Once at home nothing would make the big guy happy at all, and even asking him things would just piss him off more. We would ask him if he wanted to watch this or that, or do this or that, and the answer was a "no", but it was also accompanied by a slap, pinch, scratch, or this claw thing he makes with his hand while he points it at you, like he is going to do some Magneto powers on you or something. He did eventually calm down, about four thirty, and then things we OK again.

Meltdowns are a normal part of life for someone with autism, and the people who live with them or care for them. A meltdown is not something that is easy to deal with or even prevent. One of the hardest parts about a meltdown is you never know when this may happen, or what will trigger it. Learning to deal with the meltdowns and mitigate the damages is really our only option most of the time because nothing will quell the beast. I have heard that meltdowns get worse as a person with autism ages, but then after a point they get better, or even go away. I really hope, for everyone’s sake, that they do not get worse and only get better.

So please, if you see someone with a younger child totally freaking out don't just think they are bad parents, try to take a different perspective, that child may have Autism. When we were at McD's, I had about four people stare at me, and him, and I just wanted to punch them, or tell them to mind their own business, I so dislike when people ASSume things when they are uninformed.