Autism Awareness Card

I designed these cards for those of us who know and love someone with autism and sometimes have to deal with the funny looks or the unwanted advice from people who don't know any better.  If you'd like me to make you some, let me know and I'll be happy to, I just have to buy the actual paper to do so and haven't gone to the store yet.  Of course I would replace my email address with yours.  If there's anything you think I should add, let me know (not sure where I'd fit it in, but I'm sure we'll manage).

What's New?

Just a quick update on what's been going on the last few weeks in the wonderful world of Aidan:

• Aidan has been spending as much as an hour at a time in the mainstream kindergarten class, with an aide.
• Because of his difficulties focusing and remaining calm, we are considering whether he would benefit from ADHD meds or a change in his diet.
• Other than the concentration and hyperactivity, Aidan has had a long string of great days at school and his attitude has been much more manageable during this time, which is a great relief and much more enjoyable.
• Aidan's class has been practicing and preparing for the Special Olympics in April.  Because Aidan is not in second grade, he is not able to participate, and is technically not permitted to even go and watch.  Miss Annie (Aidan's teacher in the autism unit) spoke with the person in charge and got permission for Aidan to attend even though he is still not going to be allowed to participate.
• A couple weeks ago, Aidan decided he wanted to be an Olympic ice skater.  Jeremy and I went ice skating a couple of times without him (don't want to break our own necks trying to keep him from breaking his), and then this past weekend we took him skating.  He did great - started out holding on the wall, then onto a traffic cone, then for a while he skated without either.  I'm so proud of him.  He wasn't sure at first, but has decided he wants to keep learning to skate.  He doesn't want official lessons though, he just wants me to teach him for now.
• Today we discovered that Aidan has his first loose tooth!  It's official, he's finally becoming a big boy.

Ironic, but not in a good way.

Autistic Child Ruins Marriage He Was Born to Save (The Onion)

HOUSTON—With the challenges accompanying his developmental disorder widening the already vast gulf between his parents, autistic child Evan Thomas, 3, continued this week to destroy the failing marriage he was brought into this world to save.

Evan, who through the very act of being born was entrusted with the task of resolving lingering conflicts, soothing deep-seated contempt, and restoring intimacy to Mark and Sharon Thomas' long-strained relationship, has thus far utterly failed in his assigned duties, sources reported Monday.

"It's so much work taking care of Evan, and Mark just refuses to help out as much as he should," said Sharon Thomas, who endured a long, agonizing childbirth to put an end to the couple's constant bitter arguments. "It's so frustrating. I don't get any time to myself because Evan needs attention like 24 hours a day."

"I never asked for this," Sharon added

According to sources, Mark Thomas, 32, had always wanted a healthy, happy, completely normal son to provide a quick and easy fix to all of his marital problems. However, rather than allaying their trust issues and instantly making everything all better, Evan has reportedly driven a deeper rift between his parents by prompting fights about who is to blame for his condition.

"The doctors are constantly telling us that it's not anyone's fault, but if you'd ever met Sharon's brothers, you'd know that something's not quite right on that side of the family," Mark said. "We probably shouldn't yell in front of him as much as we do, but he doesn't really pay much attention and it honestly doesn't seem to bother him."

"In fact, nothing seems to bother him," Mark continued.

Although Evan was only diagnosed with autism six months ago, Mark said it was clear right after bringing him home from the hospital that something was wrong with their son, since their lives did not take a dramatic 180-degree turn for the better, lingering disputes did not just melt away, and years of underlying tension were only brought into sharper focus.

The child, who according to his parents rarely smiles or acts cheerful, has left many in the household concerned that he's not committed to mending the broken relationship. Moreover, during the past three years, Evan has reportedly done almost nothing to curb Mark's controlling nature or Sharon's cruel emotional abuse.
Evan has also failed to utter the words "mama" or "dada," thereby ruining any chance his parents might have had at forging an instantaneous, all-healing bond.

"Nobody told me I'd be so exhausted and cranky all the time," said Mark, who had anticipated that a son would create the mutual respect that his marriage has always lacked as opposed to making him feel overwhelmed and trapped. "Now, I just get nagged about never dealing with Evan after I bust my ass at work all day."

Mark and Sharon also complained that the highly structured schedule they're forced to keep to prevent Evan from "acting up" has severely strained their social life, causing them to miss a recent Super Bowl party at a neighbor's house that all of their friends without special-needs children were at.

In 2006, before giving birth to Evan, the awful couple attempted to salvage their relationship by purchasing an American pit bull terrier puppy. But the dog, who was reportedly a real pain to take care of, lacked the discipline to put in any work on their miserable marriage and always demanded too much affection.
Family members told reporters they weren't surprised Evan has not yet managed to transform the couple's dysfunctional marriage into a healthy and loving one.

"Oh God, they should never have had a kid," Evan's grandmother Janet Harmon said. "She should have gotten her tubes tied like she threatened to do in the first place."

Mark and Sharon said they were currently trying to get pregnant again in hopes that a new baby would take off some of the pressure of raising Evan all alone.
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I love how many articles blame marital problems on special-needs children.  It's so painfully ironic.  Of course, it's much easier to blame all the problems in your life on a child who has no choice or control over it, rather than take personal responsibility for your life sucking so bad.  Grow up people.  Really?  I couldn't even find this article funny, it's just too true for so many people.

Autism is a Gift

I grew up watching and reading X-men.  In that world, humans had "evolved", via mutation, to another level.  Normal, unevolved humans considered the mutants to be freaks and disabled.  Because of their superhuman abilities the mutants often had a very difficult time functioning in the real world.

Sound familiar?

In that world, our children would be taken in by Dr. Charles Xavier and their abilities would be honed and they would be taught how to use them to change the world.  Their "sensory integration disorder" would be superhuman hearing and sight and touch and taste.  Their way of thinking in pictures or patterns would be such an assett and we'd see neat little montages of how their brains worked. 

Autism is not a punishment, a curse, a disability, a disease.  It is a neurobiological change to the human body and brain that results in a different or better set of abilities.  Our children don't think like us, they don't experience the world in the same way we do.  Because of this, we label them as "disabled" and give them therapy.  How can we take the knowledge that these children are different and possibly BETTER and instead of trying to change them and make them more like us, help them to take advantage of the way they see and think and feel?  The differences they could make in this world could be profound. 

Where would we be today with Mozart, Van Gogh, Einstein, Newton, Tesla?  They would likely be diagnosed with some Autism Spectrum Disorder today.  Perhaps that label should lose the word "disorder" and find another word that still sets them apart, just not in a negative way.  I'm not saying we shouldn't teach our ASD children differently - we obviously should! Just like we offer different opportunities to a child who is phenomenal at sports, and we put a child who is extremely gifted in the advanced classes, we need to make sure we're not trying to change our children to make them more like us.  Maybe we should be trying to be more like them?  Maybe we should change the world to fit them, instead of telling them they should change to fit the world.

Surprise Surprise

Apparently, Aidan  can do math.  Go figure.  We know he's a smart cookie, there's no doubt about that, but I don't think I was even doing math (okay I still don't do math), let's say my brother instead, I don't think he was doing math that quickly when he was 6.

So this morning while Aidan's getting ready for school, I asked him if he was spending time in the regular kindergarten class and what he's learning in there.  He says he learns about toys, of course, because nothing else is as exciting as new and strange toys.  I asked him if he was doing any math and he said yes.  Well as you can imagine we started asking him math problems.  At first they were simple. "If you have two bakugans and Miss Annie gives you another one, how many do you have?" "Three." No hesitation.  "If you have three bakugans and one of them breaks how many do you have?" "One." Again, not a pause.  "Alright... if you have five bakugan and you buy two more, how many do you have?" "Seven!" o.0

It was such a surprise.  He got bored after that, so of course no more math problems today.  But really? After all of this, he's a math whiz too?  Gee, I got a kid genius on my hands guys!

You'll Never Walk Alone

  Every time I hear this song, I just want to grab Aidan and hold him and sing it to him.  This song is on a commercial during the olympics at least once or twice an hour.  And every time it brings tears to my eyes.  If you haven't heard it, go find the Judy Garland version and listen.  An autistic child should never walk alone (no child should), and I will always always always support Aidan's dreams. (This week the dream is ice skating)

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Seriously folks?

I have talked before about how much of a blessing Aidan is.  Today I wanted to scream, and this was before he even got home.  It wasn't anything he did though, rather something someone else said.  If you hadn't heard: Bob Marshall, R-VA: disabled kids are God's punishment for abortions?! http://tinyurl.com/yalfvx7.  

Seriously Bob?  Wow, "conservative Christians" can really put their foot in their mouth sometimes.  Did you even bother to think before you spoke Bob?  Honestly, I'm not sure what he was thinking.  According to Bob, "The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican."In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest."  Okay... so what about all those mothers who never had an abortion but our children were born with a disability?  And what about all the women who had an abortion and their subsequent child wasn't disabled?  The logic in that statement is SO far off it's beyond sad. 

The biggest problem I have with Bob's statement is that he considers disabled children a punishment at all.  This is such a prejudiced and hateful statement!  Anyone who has a child with a disability knows that their child is not a punishment but a gift!  No, it's not easy, but how lucky are we that we were good enough and strong enough to receive such a wonderful challenge? 

Bob, do us a favor.  Duct tape your mouth shut so you can't make any other stupid hateful comments.  You make everyone look bad.

The glass half full

A diagnosis of autism often feels like a death sentence when it's first given.  Your mind goes immediately to the fact that your life will never be the same, and there are so many things your child may never do.  It becomes overwhelming to try to determine what services will help your child and when and how soon you can get them, not to mention how the heck you're supposed to pay for all of this since it's usually not covered by insurance.  It would be so easy to be angry, to grieve and mourn what your child could have been, to be depressed over it all.

But take a different look at it.

You are blessed to have a child with such a unique way of seeing the world.  He or she can teach you about things you never even knew you needed to learn.  Only a child with a disorder such as autism can show you how differently the world appears to them.  Only a parent with a child who may or may not ever speak can appreciate so strongly the importance and joy of hearing their little one say "Mommy" or "I love you".  We learn patience, stubbornness, selflessness, hope, perseverance, and unconditional love.

If you can't look at those things as a blessing, then take this and chew on it for a while:  your child has autism, which is pretty much never life threatening (unless your child has comorbid symptoms which prevent them from taking nutrition or something like that).  Imagine that diagnosis of autism and how scared you were when you got it.  Now imagine if that diagnosis were one of leukemia or some other deadly childhood illness.  The likelihood of your child "coping" with or overcoming such a terrible disease is often slim.  You must watch them suffer as they go through painful treatments, and are in and out of hospitals.  Some parents even have to watch their child die.  I can't imagine the helplessness I would feel if Aidan had been diagnosed with a childhood cancer.  It's my job to protect him.  I yell at principals and teachers who I don't feel are doing their best to help him.  But what if the doctors ARE doing their best and it's still not enough?  Who do you yell at then?  At least with a diagnosis of autism, I know my child is healthy, and for now happy.  I can help him to be happy by making sure he learns to overcome his diagnosis, learns to live above and around it rather than just live with it.  I can teach him to not let it control his life and keep him from doing things he wants to do.  I never have to be afraid of dreaming and hoping with him.

Take stock of your blessings... often times they are more significant than you realize.  You were chosen to be part of an amazing miracle, and to be worthy of raising such a special child.

If you aren't the parent of a child with autism, I still encourage you to count your blessings.  It's so easy to be cynical and to think about how crappy life is, especially now when the economy is bad and times are tough.  But look at all you do have!  Did you wake up this morning?  Did you have a roof over your head?  Did you have food to eat and clothes to get dressed?  What else do you have that you take for granted?  A loving and supportive relationship with your family?  Great friends who would come get you if your car broke down at 4am?  A job that may not be your favorite but at least pays your bills?  Life changes drastically when you look at what you have instead of what you don't.

A Different Perspective

It is not until you become a mother that your judgment slowly turns to compassion and understanding.
- Erma Bombeck

As the mother of a child who has autism, I have learned this better than I thought I could.  I'm not saying that I don't sometimes still judge people, I'm not perfect.  But one group that I've learned not to judge is my fellow parents.  Most people, even some parents, when they see a parent whose child is misbehaving or being obnoxious or loud or throwing a tantrum, they glare at the parent as if they are the worst parent in the world.  We're guilty of having done it at least once, even if we don't admit it.  We see the child throwing a tantrum, or talking too loudly in the restaurant, or wearing a diaper even though they should be much too old to do so.  And we automatically think, "oh, if I were that child's parent, what I would do is....".  But you know absolutely nothing about that child or his parent in most cases.  And sometimes, even if you do, your lack of perspective gives you a skewed judgment of what is really happening and how it should be handled.

Aidan has a hard time using the correct volume at the right time and place.  Aidan is very sensitive to sound, light, and smell (and maybe other things he can't tell us).  Aidan has a difficult time with transitions and needs extra warning that something is about to change, and what to expect.  Aidan isn't always able to put into words what he wants or needs and it frustrates both of us.  Aidan loves watching the same thing over and over and over and over.  Aidan loves to sing, and will do so as often as he's permitted to do so, and sometimes when he isn't.  Aidan can't always make eye contact, but he tries to.

But let's assume you didn't know any of those things about Aidan and you came across the two of us at the grocery store.  He starts out talking or singing loudly, and you may not know it but I've given up trying to quiet him down because it isn't a library or the movie theater.  Then, without much warning he puts his hands over his ears and starts acting rather brattishly - you don't pay attention but to him the combination of sounds has become overwhelming, perhaps the loudspeaker came on or more people were talking than before.  He's also hungry and the lights are bothering his eyes, but you don't know this when he starts having his melt down, screaming and throwing a fit because he can't tell me what is making him so uncomfortable.  I have to finish my grocery shopping and I don't have anyone who could have watched him because I'm a single mom and don't always have an immediately available babysitter, or a chance to do it while he's at school.  I know that you're watching me and rolling your eyes and talking behind your hand to your friend about how terrible of a person and irresponsible of a mother I am because I can't control my child, and don't have the common courtesy to take him out of the store so people can shop in peace.

I've learned the hard way never to judge parents for the way their children act, because it requires me to make an assumption that everything else about their life is perfect and they are just choosing to let their child behave poorly.  I can't stand the look I get when Aidan is having a bad day.  I thank God that those days are fewer now than they used to be, but there was a time when I dreaded taking him anywhere in public.  It made me want to carry around business cards so people would stop looking at me like I was a bad person, and looking at my child like he's the devil.

So, next time you're out at a restaurant or shopping, or wherever you may be, and you see a child who's acting like a handful and it annoys you, before you make a snarky comment about how you would handle it... stop.  Think.  Reserve judgment.  Be compassionate.  Smile at the mom who's struggling with her child that is screaming for apparently little reason (don't assume it's just because he didn't get his way), offer to carry something for the dad who needs to pick his little girl up because things are too loud for her and she's in a panic, laugh and join in when someone's child is singing along with the music.  We're so quick to judge people, and it's a hard habit to break.  I was blessed to be given a little boy who could force me to break that habit.

Honestly I think someone secretly prayed I would be given patience.

Thanks, whoever you are.  My test has been awesome!

Oh noes! No circus this year.

We had planned on taking Aidan to the circus today.  Sadly it seems the tickets are sold out.  I honestly dreaded telling Aidan that we couldn't go, because we'd talked about it for a couple of days and he seemed to be really really excited.  I was so proud of him though, when we told him we couldn't go he was upset for a few moments, but was willing to come up with an alternative to keep himself entertained.  I asked him if there was something else he would rather do (I figured he'd ask to go to Sci-Quest or the toy store or something), and he decided he wanted to play with his tornado machine. That was seriously surprising to me.  There was no melt-down, no whining, no begging to go somewhere else or anything.  He was happy to play with his toy (THANKS MAWMAW!) instead of going to the circus.  I feel horrible that he didn't get to go, and that I didn't keep my promise to him, but I didn't realize the circus would sell out!

It's great to see him make progress and learn to take control of his behaviour and his attitude.  I'm so proud of him (even when he has bad days, which are fewer and further between)!