15. Autism Day at the Aquarium

This past Sunday we went to Autism Day at the Aquarium.  It was sponsored by Autism Speaks, which I know is a controversial charity amongst families who have children with autism, but this event was free.  If we had gone on a normal day, to pay for all of us to get in would have cost $131.80 before tax - and that is not including Tiny because he would be free.  Which basically means we wouldn't have gone because for a family of five, spending that sort of money on tickets is out of the question.  Having special needs kids always comes with a host of expenses and often the fun things get pushed to the side to pay for the necessary things.  So whatever the feelings over Autism Speaks, they provided us with a free day at the aquarium.  

Normally the aquarium opens at 10a, but they opened two hours early for those on the autism list.  It didn't mean it was less crowded, because it was a complete nut house, but what it did mean was that of all the kids who were different, no one batted an eye.  The differences were so normal to everyone that we didn't feel uncomfortable.

J behaved really well.  I had to reign him in a couple times when he would pace and walk in front of other people without realizing it.  He has a way of touching his fingers when he feels uncomfortable and he did that the entire time, but he didn't seem too overwhelmed.  He was really quiet, which happens when he is out of his comfort zone.  

It was fairly noisy, but J seemed okay with it.  A fair amount of kids had some sort of ear protection, like noise-canceling headphones one might wear at a shooting range.  Stormy and I both wondered if those might not be a bad idea for when we go to Disney.  I wonder how different J's behavior might have been if the noises weren't so overwhelming.  I wonder if he would have been more energetic or animated or excited.  

The vast majority of families were very friendly and accepting.  If a child did something, like bump into someone, or start to have a meltdown, or refuse to get on an elevator, the parents would apologize, but everyone was extremely gracious in their responses.  That's okay or I understand what it's like, you don't need to apologize.  

I think you do need to apologize.  You need to acknowledge that your child has done something and apologize for it because that's the polite thing to do.  J walked right in front of someone and I gently pulled him back and said, "I'm sorry," to the man he walked in front of, and to J I said, "You need to remember to watch where you are walking."  The man smiled and said That's okay, you don't need to apologize, but of course I did and I needed to.

So while most parents were accepting and understanding, a tiny percentage did not apologize for their kids, let them run around, and did nothing to either curb the behaviors or even apologize when those behaviors negatively impacted those around them.  One child knocked into me so hard that I had to take a step to right myself.  I wasn't angry or upset, but the mom just shrugged and ignored it and said nothing to me whatsoever.  I saw enough of this that it made me wonder - are these kids' behaviors worse than my own ASD child because they have a more severe form of autism, or are these kids' behaviors worse because their parents use the ASD as an excuse and don't try to stop the negative behaviors?

The positives in the experience vastly outweighed the negatives.  It was also the first time I had done anything like this.  Normally I would not have signed up for an autism day or accepted free tickets, but it was nice to be able to go with the whole family and have everyone participate in something that we may not have been able to do otherwise.  

Mostly I left feeling pretty good - good that the older boys were able to have fun and have fun at something they could both really enjoy and good that the entire experience was so positive.  I didn't have any feelings of stress because I knew that if J had any sort of episode or negative reactions to anything in the aquarium that those around us would understand.  No one would stop and stare and wonder what was wrong with my kid, because what is wrong with my kid is what is wrong with their kid, so there was an air of acceptance in the entire place.  And whether people likes Autism Speaks or not, for one day they were able to help me provide something for my family that was wonderful.

J and Little Iron Man in front of the jellyfish.

14. M-I-C - See you real soon - K - E -Y - Why? Because We Like You. M-O-U-S-E

In six weeks we are leaving for Disney World.  We are leaving Tiny with my parents (bye, Tiny) and are just taking the older two boys.  We have a (evil) genius plan.  On Thursday morning I am going to drop the boys off at my parents house for a playdate while I go home and pack up the car.  When Stormy gets off work, we will get in the car, pick up the older two boys, and start the drive to Florida.  But the boys won't know where we are going.  The whole thing is a secret.

I just bought them new duffel bags with their names embroidered on them which I will pack full of their clothes and things for the trip.  I have small packs for them to take to the parks that we can fill with snacks and souvenirs and a new water bottle that I bought for each of them.  They each have a DS and a handful of games, and we also have a dual-screen dvd player in the car, so I will also pack the car with a couple of movies.

We are really excited to take them to Disney, and also excited that they have no idea that we are going.  I didn't realize that Disney offered any special services for those with ASD until I started hearing about it on the news and how angry certain families were over the new regulations.  I'll be honest, I have no idea about this.  I never considered looking into whether there were any special services for J at Disney.  It never crossed my  mind.  Perhaps that is rather naive of me, but I usually don't seek out special services outside of his school.

I think I have a certain amount of guilt when looking for services.  I wonder, does he really need it?  Am I exploiting his disorder?  Do other people need this service more than we do?  I get an odd feeling whenever I use the ASD as a reason or excuse for something.  I don't know why.

So I looked up Disney's disability services and bean reading through their brochure about Disney and ASD.  It was definitely interesting.  They broke down the attractions into different sets of senses for those who have sensory issues.  Touch.  Smell.  Noise.  Flashing Lights.  Restraints.  Etc.  It was great and very relieving!  J has been to Six Flags and he likes a certain number of the roller coasters.  He doesn't like not knowing when he is going to go upside down, but he is surprisingly okay with that part.  He would rather sit in a normal seat than ride something where the straps come over his shoulders.  All of those rides are outside, too, and he sometimes has issues with lights, but mostly just has issues with sound.

In the mornings when we make coffee, he closes his ears so he doesn't have to listen to the grinder.  When I used to make baby food for Tiny, he would close his ears whenever I used the blender.  At school, he cringes when the bell rings, but he does okay with it because he knows it's coming.  I'm not sure how he is going to do with some of the rides that might have loud noises.  My husband brought up the Lilo & Stitch ride.  I haven't been to Disney since that ride came about, so I can't even begin to assess how J will do.  Luckily, we can look through the list of rides and get a better idea of ones we need to help prepare him for.

He has done fine with the lines at Six Flags, so I think he'll do all right with the lines at Disney, but my concern is I don't want to force him to wait in a line for a ride that I'm not sure he'll enjoy.  That's where I think we will use the disability services.  I would rather have him be able to ride as many rides as we know he'll enjoy and perhaps that will offset the rides he won't.  I hope that the rides that will be fun will help his overall mood and lessen any potential problems we have for meltdowns or etc.

This year is a big year for me.  I joined an autism parent support group.  I signed up for an autism walk to raise awareness.  I signed up for the autism day at the aquarium, which comes along with free admission for families with a child with autism.  And then now, going to Disney and using their services.  I've never been a fan of doing things like this.  It's never been out of embarrassment, but perhaps more out of just wanting to make sure those who are worse off than J can have access to these things before us.  But we deal with autism every single day.  And even the days that are great, we are still dealing in some aspect with autism.  It never fully goes away.  It is never cured.  Because of these reasons, I think I decided that I needed to start using more services to my advantage.  Be more aware and more comfortable with it.

Either way, we are going to Disney and we are going to meet Mickey Mouse!

13. Off the Autism Clock

This week past week was spring break.  The two older kids are with other family members, so it's just been me and Tiny at the house, and Stormy when he's off from work.  First of all, I don't have to wake up at 6a to get anyone ready for school.  That is the most amazing part of this week.  Tiny sleeps until at least 9a, sometimes 10a.  He didn't sleep for almost the first entire year of his life, so he's making up for it now.  

Honestly, it's been a very nice break.  It's given me a chance to relax and only focus on one little person.  It's let me think about the things I want to do, need to do, things that are just out of reach and how I need to grab hold of them.

Whenever I get small breaks from the kids, whether it's an evening or a day, it allows me time to be ME.  Not the me who is a mom or the me who is an advocate, but the ME who is ME.  It's nice to be able to breathe and not always feel as though I'm just trying to catch my breath.

We get breaks like this every so often, but we always have at least one of our babies at home.  Usually the baby, since he's so little still.

It's times like this week, when I get to be calm and laid-back that I gain strength to deal with the chaos that sometimes erupts in our house.  Us parents of special needs kids aren't superheroes.  We're just regular people and these are the kids we have.  We didn't choose them, they were given to us, whether by God or nature, but it wasn't our choice, so sometimes we need a break.  

There was a period of time where I tried to be that superhero, where I tried to implement all the suggestions from the therapist, implement advice from autism articles in books or websites.  I tried to do anything and everything that was supposed to help J.  But I reached a breaking point.  I felt like an emotional mess inside; I was a fraud.  I was trying to keep it together, trying to show how strong I was, how brave, how together, but tiny things made me want to cry.  Or they did make me cry and I couldn't figure out why.

For me, it boiled down to needing help and support and not feeling as though I was getting an adequate amount of either.  I tried to do everything and keep my cool and calm, but sometimes all the stress and emotions overflowed and I had to let it all out.  There is something to be said about allowing yourself to cry.  I remember several months ago when I let it happen.  It was last September and I was in the middle of a painting project in the house, and I had a very limited amount of time to get it finished.  I had thought Stormtrooper was going to tape everything off so I could finish, but it wasn't taped, and I looked around the room and felt this overwhelming pressure build up in my chest, throat, and behind my eyes.  I probably shouldn't have been so upset about blue-tape, but it was the final thing that made me lose it.  I sat down in the room and cried.  I cried for a while, everything came pouring out of me, and the pressure slowly began to dissipate.  Then the tears stop, I picked myself up off the floor, went to the kitchen and drank two large glass of water, and I immediately felt stronger.  I went into the bedroom and painted as much as I could before Tiny woke up from his nap and I had to stop.

That day, the tears were very violent.  I haven't had a breakdown like it since, but I have also used my words to really convey the times when I need extra support.  My husband has also been more giving when it comes to times that I take for myself away from the house, away from the kids, so not only do I get more emotional support at my house, but also more support when I need my time away from the house.  Those times are very important because it's time to relax and not have to be a mom - a normal mom and a special needs mom.

I've wondered if my husband doesn't fully understand what it's like being at home since he works for 10-12 hours a day, but I think it's a learning process for both of us, to find the balance of understanding and support so that neither of us gets overwhelmed in the roles we play in our family.  It has taken time, but he's become an advocate in his own way for both me and J, and also he's become more understanding and supportive.  He's relinquished a lot of the apprehension over what he doesn't understand and has allowed me to take the reigns.  Of course there are times where he disagrees, but overall he has a much more open mind to the therapies we do, and the hardships we face along with the celebrations we make.

I know not everyone is as lucky as we are to have family set in place who will help take care of any of our three babies so we can get a break.  It's still a somewhat rare occurrence, but a blessing nevertheless.  We are also lucky that our ASD diagnosis wasn't severe so that our family is unable to help us out as much as they do.

My favorite times are when the family is all together and happy, but I have enjoyed the time off the Autism clock this past week.  I've gotten to a place where I am not embarrassed to be open about the hard times we've had with ASD.  A lot of my strength has been learnt during times of darkness.  And the ugly truth of ASD is that there are a lot of ugly times, a lot of emotionally overwhelming times.  But as much as the time off has been lovely, I'd rather have my sweet ASD kid home and I'll give him a huge hug when I do finally get to see him!

12. Why Can't We Be Friends?

At nine years old, J hasn't fully realized how different he is, but he is beginning to.  He will tell you he has an autism disorder, even though I don't think he knows quite what that means.  His therapist asked him to name some things he wanted most.  First was a higher grade in Reading, which is currently his lowest subject average at a 92 (he struggles with figuring out what characters are feeling or what motivates them).  A pet to call his own (we've discussed maybe allowing him a fish one day since that is the lowest maintenance pet we can think of).  And more playdates.

J plays a lot with my nieces, who are eight, six, and three years old.  And seventeen, but she doesn't so much play as oversees.  Over the years, I've tried to get playdates together.  When we lived in the city and J went to a different public school, I would have birthday parties and invite all the boys in class.  Usually about half came, which was lovely and made J feel really good.  One year, one boy said he would come, but never showed up.  His father called and asked if we could get the boys together on a playdate the next weekend because his son ended up being sick the day of the party.  So we made plans, and they never showed up.  So his father then made another excuse, we rescheduled again, but again, he didn't show up.  After two no-shows, I stopped telling J about playdates.  It happened again with another parent, who completely flaked out on a playdate with J.  This time she had the decency to tell me that J "cut-up too much in class" for her to be comfortable to allow her son to be around J.  Amazing how J's behavior was considered "cutting up."  It makes me wonder what that mother thinks of kids who have behavioral problems as opposed to developmental problems.

So playdates have been a difficult thing.  Since I don't make J wear a sign on his forehead that says I have Autism Spectrum Disorder, I don't think it's obvious to all parents there is something wrong.  Or they probably know something is wrong or different, but they don't know what.  And people don't want their own children around someone who is weird.  J can be very different from the other kids.

So much of our behavioral therapies focus on how to change J's behaviors, to help him cope and to prevent tantrums.  Right now, he will not walk on the wooden floor of the entryway, instead he will walk around the perimeter and take extra-long strides to get to the stairs without touching the wood.  Why?  I don't know.  It's fascinating to watch him, though.  It's his most obvious OCD-type behavior; he takes the same route every time. But it's one of those quirky things that make other kids weary to become friends with J.

I don't want the therapies to change the essence of who J is.  He was not born to be society's definition of normal.  I want him to be able to cope and adjust himself so he can be happy and calm.  I know sometimes when he is forced to change a part of him that he is not ready to change, he will seize up and become extremely agitated.  Sometimes this happens when I try to discuss social issues with him.  He doesn't understand jokes or sarcasm, which was very obvious yesterday when I told him a joke.  

What's the longest word in the dictionary?

Smile!  Because there's a Mile after the S.

J blinked and looked lost.  "I don't get it."  I tried to explain that it was a joke and why it was a joke, but he didn't understand.  He kept telling me it didn't make sense because smile only has five letters.  He said, "This is real life and in real life, 'smile' only has five letters."  I finally gave up and tried to change the subject, but J was very upset that he didn't understand.  The problem with this is, when it comes to friends, he does not understand other kids his age.  They tell each other jokes or are sarcastic, but because he cannot differentiate, he gets on the other kids' nerves.  When they're joking, he thinks they're serious, and when they're serious, he thinks they're joking.  This has created some tension between him and the other kids, and sometimes led to J getting into trouble when he doesn't know when to stop playing around and another kid will get upset/annoyed/frustrated/etc.

The social aspect of J's disorder affects the way he interacts with adults, too.  He rarely speaks to them, and in fact, will just ignore them unless prompted to say hello.  Once he is comfortable, he can often get focused on a single topic and can not deter from it.  Today, while we waited for the school bus, he started talking about Minecraft and some new "textures" he got (what that means, I really have no idea), and the bus came and he didn't stop talking about it.  Continuously before I had to usher him onto the bus.  This happens frequently.  But when you're an adult who has no idea about J, it can come across as rude and off-putting.  

Luckily, J has one good friend at school, a girl who has a disorder similar to J, so they get along very well.  They're also extremely likeminded, but where J talks too little to adults, she talks too much, so they compliment each other.  He's very happy to have her as friend, but because she's a girl, sometimes the other kids make fun of him (them).  A couple times, J has grown overly upset with the other kids because he can't tell when they're joking or when they're mean.  And from what it sounds like, it's a mixture of both.  I've told him that maybe they're just jealous that they don't have friends who are girls, but he doesn't understand why anyone would be jealous of having a girl friend (or a girlfriend should you choose to close the gap between girl and friend).

I used to fear for the day when J would realize he doesn't have any friends, but recently I joined a parent-support group for parents with kids with high-functioning autism/Aspergers and similar pervasive developmental disorders.  At the same time we have the support group, there is a group for the kids, divided up by age group.  J gets to learn about social skills and appropriate communication in a fun environment.  And the last fifteen minutes of group, he gets to play on the playground with his new friends.  These kids have the same disorder as J, but that doesn't make their friendships any less real.  What's amazing for me is that my fear that he won't have any friends when he hits his teenager years may become nonexistent.  I think if he continues with regular school, he won't have a lot, if any friends, but that's all right, so long as he is happy with the friends he does have.  And hopefully he will be able to make a lot of new friends with the kids he's meeting now through group.

J is beginning to realize he is different.  He worked on idioms for a few weeks in his speech class and when he finally had a breakthrough in understanding what they were, he was so proud of himself.  He came home and started spouting off the idioms he learned and what they actually meant.  A couch potato isn't an actual potato, did you know that?  Yes, I did know that.  How come other kids understand things like idioms, but I can't?  I have no idea, no idea at all.  (Although, I suspect none of the other third graders have any idea what the hell an idiom is anyway, but they certain know what a couch potato is.)  One day that how-come-the-other-kids-understand-things-but-I-don't question could turn into why-don't-the-other-kids-like-me?  At that point, I probably will have run out of answers.

Sometimes I wonder what kind of kid J would be if he didn't have autism.  Would he be as kind-hearted?  Would he have tantrums or meltdowns?  Would he be more interested in sports than art?  Could he actually dribble a basketball or throw a football?  Would he want to dribble a basketball or throw a football?  Would he have friends?  I think we all assume that if our kids are normal it must mean they will have friends, but that isn't necessarily true.  There are those kids out there who don't have any pervasive disorders and yet still don't have many, if any, friends.  So if J was normal, would he have any friends?  Would he be popular?  Or would he sit by himself on the bus?

I do have my moments where I wish J didn't have autism.  The times usually come when he is having some sort of meltdown or tantrum, or he has decided to ignore everything and everyone around him, no matter how many times you call out his name.  I am not ashamed to admit that I have wondered what life would be like with a "normal" child.  I think some of my fears would be different, but fundamentally they would all be centered around the same thing: having my son grow up to be a happy, healthy person.  I think it's what Stormtrooper and I want for all our children.  Still, if J was normal, how would his friendships be?  We wouldn't have his club that we go to every other week and the friends he is making there.  He wouldn't have his current BFF from school either, because if he didn't have ASD, he might not be in a position to relate to her, and thus, not even be friends with her.

Autism minds are really quite amazing.  J is a great academic student, a fantastic artist, and can really do things with a lot of precision and perfection when he wants to.  His mind runs on a different wavelength, a frequency that no one else can really tune in to.  It makes friendships and socialization difficult, but I can only aim to surround J with people who will affect him positively and help shape and form him into the person he is supposed to be.