Nuances

People with autism aren't really known for picking up certain nuances. For example, I can be in Darin's face, telling him he did something he shouldn't (like hitting Lizzy), and he'll be laughing - probably because he thinks Mommy's mean face is funny.

And then there are times that I wonder.... Just what are they aware of? I went to change Darin yesterday, and I had everything I needed in reach, but Darin didn't see the wipes near me (they were on a shelf nearby), so he said, "Where's the wipes?" I pulled the wipes from the shelf, but they weren't the wipes he has been seeing lately, so he said, "No, the wipes." And then to our astonishment, he turned to Scott and said, "Scott, need the wipes." Not Daddy... Scott. I worked very hard to keep it together because I didn't want him to think it was fun to call Daddy Scott. Scott told him, "No, my name is Daddy." Darin then replied, "No, Scott!"

Darin has never called Scott by his name before. It has always been Daddy. So it got me to thinking... Why would he call him Scott? He hasn't called him Scott since. And then I realized that when I need something from Scott, I call him Scott. When I'm having the kids ask Scott for something, I have them call him Daddy. So, I have to wonder - did Darin pick up a pattern that when Mommy needs something, Daddy is Scott and when the kids need something, Daddy is Daddy?

Parent-Teacher Conference

One of the few blessings of my son's autism is his above average intelligence. We met with his teacher on Thursday night and learned they are teaching him mostly from the First Grade curriculum as he has an excellent grasp on the Kindergarten curriculum already. It was so amazing to see our son sight read and recite the classroom rules. And then we also learned that starting in January, they are going to start Darin on an inclusion program. That means he'll go sit in with a mainstream Kindergarten class for part of his day. He'll have an aide with him and he'll start with small sections of time - like going during story time. And when he is going to the mainstream Kindergarten for long sections of time, they'll start decreasing the amount of time the aide spends with him. This will allow Darin to have models of behavior outside of his fellow autistic classmates. Darin's teacher said that all it really boils down to for Darin is getting him to use words instead of crying when he needs to express something and some of his speech therapy. That's all that really separates him from mainstream Kindergarten. She showed us the method she uses to signal to Darin that he needs to stop crying and use his words - and it has already helped at home. And she also explained the purpose behind the glitter pumpkin:

It wasn't just an easy craft project. It was meant to get these kids to face some of their tactile issues. They had to paint the glue on the pumpkin and then roll it in the glitter. Each time Darin got glue on his hands, he went over to the sink to wash them. Then he felt completely out of his element when he realized he would have to pick up the sticky pumpkin in order to roll it in the glitter. They eventually let him scoop and pour the glitter over the pumpkin, but he still ended up getting glitter and glue on his fingers, but in the end, it didn't really bother him. Yes, when the activity was all over, he quickly went to wash his hands, but for a few moments, he was okay with the mess.

Odd Spontaneity

From my experience, people with autism are not known for being spontaneous. Routine is usually the order of the day. So, you can imagine our surprise whenever Darin does something new - especially when it is a really big move forward. Out of the blue this weekend, Darin told Scott that he needed to use the bathroom. We have tried many times to get Darin potty trained. Hasn't really taken. So, you can imagine Scott's surprise when Darin started squirming and pointed to the bathroom. Now, this hasn't been an overnight change because Darin still gets really focused on other things and doesn't always think about how he needs to use the bathroom. When there are fewer distractions (like when we were sitting through church), he suddenly remembers that he needs to use the bathroom.

So, this spontaneous change has inspired us to attempt potty training again. Here's hoping it takes this time.

The Greater Good

There are many times when doing things with Darin is an exercise in determining "The Greater Good". Take for example walking into a building. Darin is always very interested in being independent and opening doors for himself - or pushing the handicap button to make the door open for him. But at times, the door can be very cumbersome and can cause a five-year old some struggles. He is always very determined to do it himself. So, the circumstances might arise when his determination creates a log jam of people waiting for Darin. The Greater Good? Do I hope the people behind us will be understanding or do I upset Darin and force him to go inside giving myself about 5 minutes of attempting to calm him down afterwards?

In an ideal world (or at least my ideal world), I would always be able to do what is best for Darin. But this isn't an ideal world. Sometimes I can't be that selfish. And sometimes the situation gets even worse when a very helpful stranger tries to lend a hand. How do you explain to a complete stranger that you appreciate their help in the situation, but they just made a difficult situation worse by trying to help? Usually, I just find myself saying thank you while I try to take Darin to the side so he can have "his turn" in a minute. And I've become very skilled at learning covert ways of opening doors without Darin's knowledge. I learn many interesting and unique skills in my quest for "the greater good".

My Love of "Copy/Paste"

I do not have an artistic bone in my body. My great works of art could, at best, consist of a lot of stick figures. I never allowed my mom to ask my opinion of whether the thread she had picked match the color of fabric she was going to use - I was not the color judge. So, when it comes to creating Social Stories for my son, I use copy/paste.

Social Stories are a visual timeline for Darin to follow to determine his schedule. We've made a fair few that have worked in the past. When we tried potty training for the first time, I made a pretty good one that is still hanging on the wall of two of our bathrooms, even though we've delayed potty training for quite a bit of time now. When the family was out in California for an extended time, Aunt Julie made a great one with photographs for Darin to get ready for bed.

After struggling with Darin the first few days of school to get him on the bus, I created a really short one to let him know he needed to get dressed, eat his breakfast, and get on the bus. Wouldn't you know it - right after I made it, he became compliant with getting on the bus? Well, it wasn't all a waste. After a handful of days being compliant, he went right back to pitching a fit about getting on the bus. Out came the new Social Story. Darin was pretty excited - and what a difference it has made in the last two days.

So, last night, I spent quite a bit of time to print out a new copy on cardstock paper, a new copy of his short bedtime Social Story, and a few little cards I created to let Darin choose what he wanted to do when he got home from school. I cut them all to a good size and then laminated them with contact paper (I'm going to have to do the same for the potty training schedule when we start training again because they are in pretty bad shape.

I am very lucky to be living in an age where I can get a picture of almost anything off the internet or a reasonable clip art picture to represent things like sleepings (the word in our house that means pajamas). Otherwise, my husband would be doing a lot of drawing of pictures 'cause I would be totally lost without copy/paste. Darin wouldn't understand what Mommy's scribbles were supposed to be.

A Ray of Light

We're in for a rough couple of weeks as Darin adjusts to his new schedule. We're trying to help him understand that going to sleep when we put him to bed will help, but that seems to be when he gets his second wind. So, we struggle with getting him to go to bed, and then when he's tired in the morning, we struggle with getting him to get on the bus to go to school. Transitioning between activities has never been Darin's strong suit.

So, last night was one of those struggling nights. Darin just wouldn't do what I needed him to do. I was running out of patience from my own lack of sleep and my need to get something to eat and I pretty much lost it. I was stomping around and slamming doors and drawers as I worked on getting Darin in his "sleepings". We finally got the sleepings on and Darin tucked into bed when the tears started. I sat on the edge of his bed and apologized for my anger. I kept saying sorry over and over to try to help him understand I am mad at the autism, not mad at Darin. Something amazing occured. To understand how amazing this was, you have to understand that most autistic people have a hard time understanding and interpreting emotions. There have been plenty of times when I've scowled in anger at Darin and he just laughs because he thinks I'm pulling a funny face. And so, as I sat there telling Darin "I'm sorry," I found myself hearing him tell me that I got mad and it made him cry. I almost started to cry out of joy, but I knew that would just confuse Darin. My little autistic boy was telling me that he had realized I was mad and it made him cry! Ok, the crying part wasn't very good parenting, but we're all human and that's why I was apologizing. And then, Darin said, "I'm sorry Mommy." Maybe I'm just being hopeful, but I'm going to believe that he was apologizing for making me mad. Thank you, Darin, and thank you, Heavenly Father, for this moment of understanding with my son.

Unusual Reactions

Being the parent of an autistic child can make you look like a weirdo to a stranger. Who else would be sobbing at the intermission of The Music Man? I've seen The Music Man quite a few times, but not since I have become a parent. Seeing shy Winthrop break into song about the Wells Fargo Wagon brought me to tears in seconds. In that little boy, I saw my own little boy with his own communication problems. No, it's not like trying to overcome a lisp, but he's just about as uncommunicative as Winthop - only really answers questions that are directed to him, and most of the time, those questions have to be yes/no. I was crying for the day when my son would be able to come home from school and excitedly burst into telling me about every minute of his day. I was crying for the day when my son would be able to tell me what he wants for Christmas and what he wants to be for Halloween. I was crying for the day when my son would be able to say a sincere prayer from his heart.

Those days will come, I tell myself. Those days will come. In the meantime, I will try to remember that there are glimmers of the future - one that happened last night. As I was putting Darin to bed, he developed hiccups. It didn't really bother him and we went about his routine as usual. A few hours later, he came downstairs to excitedly exclaim, "Mommy! My hiccups are gone!" Thanks for the update, Darin, and thanks for Mommy's moment of joy.

Learning a New Language

Communicating with my son has become learning a foreign language. All parents go through some form of this interpreting skill as our children learn to talk. We hear it every day, so we can interpret the babbling into coherence for others. For example, with Lizzy, she became so used to us asking her if she wanted "more drink" that when she does want more drink, she asks "Moink?" We're working on breaking that one word into two.

With Darin, not only do we have to interpret the words he can speak, we have to understand what those mean to him so we can use them appropriately. Our latest development has been "castle ball". For those of you who haven't learned this new phrase from Darin in the last week, can you guess what that means?

Did you guess miniature golf? Well, that's what "castle ball" is. We took the kids to play minature golf last weekend and there is a castle on the course. Thus, castle ball was born. Darin loves to play miniature golf, and as we take him to play castle ball in the coming weeks, we'll be working on learning "miniature golf" instead of "castle ball". It is all about learning his language and then finding a way to teach him the words most people use. With something like "castle ball", it is easy because it is so tangible. But I know there will be words that he will find his own way of interpreting that will be harder to conceptualize for teaching purposes.

Bad Behavior Can Be Good

When you are a parent of a child with autism, it can be interesting when you have moments of being happy when your child is being difficult.

This last weekend, my best friend and her husband (who happens to be one of my husband's brothers) came to stay with us while they took her sister up to Weber State. They were only able to stay with us for about a day and a half, and for most of that time, they were out and about. When they left on Sunday morning, Darin was VERY sad to see them go. Now perhaps my son can recogize a kindred sprit in Uncle Jared who also has autism, but it was so wonderful to see Darin be emotionally attached to Uncle Jared - even if he was pouty and cranky for about an hour afterward.

But even more exciting was to hear that my children were fighting over an imaginary backpack. Autistic kids usually don't have a great knack for imaginary play, so when Scott told me that Darin and Lizzy had been fighting and crying over an imaginary backpack, I couldn't help but be pleased. Darin had been watching Dora the Explorer (one of his favorite shows unfortunately - the show drives us crazy!) and he put on an imaginary backpack when Dora put on her backpack. Well, Lizzy came over and "took" Darin's imaginary backpack and put it on herself. Darin came and "took" it back. The fighting ensued. But in the midst of the chaos (which I was luckily not a part of), it was exciting to note that not only did Darin imagine a backpack, he was able to continue to imagine that his backpack had been taken. He could have completely ignored Lizzy's behavior and not understand what she meant by her actions, but he caught on and took his revenge quickly.

So even though I'm sure there was some hitting involved in the episode, there was still joy in the moment.

Vacations: A Blessing and a Curse

Vacationing with a child with Autism has its ups and downs. One nice thing is by being in a different environment, he tends to not be as rigid in his routines. Since he is not in his familiar environment, he can think that things may not be the same. But this can also be a strain when you need him to do something he normally does, such as going to bed. Another bonus about vacationing with a child with Austism is the ability to introduce him to new experiences. He can see people he hasn't seen in awhile, make new friends, see new things. Our kids got to feed the ducks near my aunt's home last weekend. After that, each time we drove past the ducks, he said hello and goodbye. Nobody said my son's new friends had to be human.

But just as it is with any vacation, coming home can be exhausting. And when my son gets exhausted, he becomes more difficult. It is times like this when I wish he could tell me what he is feeling. If he could just simply say, "Mom, I just don't want to do anything," then at least I could explain to him that he's exhausted from the trip like the rest of us, but that doesn't mean we shouldn't do what we need to do.

And while I know it will get better as he gains more social understanding, taking him anywhere can be exhausting, whether it be on a vacation or to the store or to Grandma's house for dinner. There is such a pressure to be ultra-aware of what he's doing or where he is - especially when he is around other children. And this pressure may just be of my own making, but that knowledge doesn't make it go away. I still want to try to be there to keep my son from hitting another child who doesn't understand when he doesn't want to play or when my son doesn't understand sharing doesn't mean taking something away the moment you want it. At my home, when I get frustrated with my son and his behavior, I can put him in his room where he can have his royal fit. When I'm not at home, I don't really have that option. I may have a room to put him in, but it isn't the same as putting him in his room at home. At home, I know there is nothing he can get into. The worst he can do is take the sheets off the bed. In other places we go, there aren't rooms that empty. I may be able to shut him away so he can calm down on his own, but I have to worry about what he might get into.

So, we don't really get out that much. I know we should be exposing our son to more people so he understands he needs to obey more people than just his parents. I know both myself and my husband need the break from the life of raising an autistic child. I know all of this. It doesn't change the circumstances of how responsible I feel for his upbringing (which may be amplified by my own feelings of not being home to help take care of him during the day). Until my son learns better social understanding or until I can let go of some of the responsibility I feel about him, nothing much is going to change.

I See Autism

Do you remember the catch phrase from the movie "The Sixth Sense": I see dead people?

Well, I see Autism.

I realized this weekend while watching "Pride and Prejudice" that an argument could be made that Mr. Darcy is autistic. Sure, a lot of his actions can be attributed to pride and/or prejudice (hence the title), but sometimes I wonder...

When he proposed to Lizzy, he jumped right to the point and told her straight out that he loved her. He then proceeded to tell her every reason why he SHOULDN'T love her. Isn't that every girl's dream proposal? But he admits the reason himself: "...disguise of every sort is my abhorrence. Nor am I ashamed of the feelings I related. They were natural and just." Do you know that autistic people have a hard time telling lies? Lying is just another social norm that they would have to learn. Social norms are taught to autistic people - don't hit, be quiet in the library, ask for something instead of crying and whining. I don't really see myself teaching my son how to lie. It just isn't a social norm that is high on my list of things I want to teach my son. It doesn't even strike me as something I want to add to the list.

So, perhaps Mr. Darcy didn't understand you aren't supposed to tell the girl you love all of the reasons you've been trying not to love her. And then, when Elizabeth rejects him, he doesn't comprehend it. I'm sure in all of the stories he had read and heard, when a reputable man proposes to the girl he loves, she accepts. He just doesn't understand how she could possibly reject him. Yes, this could be a fault of his pride, but perhaps he just believed it was a social norm for a girl who receives a proposal to accept the proposal. Compare this to the rejection Elizabeth gives to Mr. Collins earlier in the story. When he initially rejects him, he begins to think of reasons why she might be rejecting him. Yes, he still expects Elizabeth to accept him, but he can see some "social norms" that might be causing Elizabeth's rejection. Teaching someone with autism about "social norms" can be difficult at times because not all circumstances have the same outcome. You can't just tell them not to hit people because then they won't understand when some people hit him. You have to teach him not to hit people and then teach him what he needs to do when someone hits him. And even that isn't easy. Perhaps he is hit while he's on the playground. He needs to know to go to his teacher. Perhaps Lizzy hits him. He needs to go to a parent. Perhaps he gets hit in Primary. He needs to know to go to his teacher. Right now, I have to break it down into those specifics because he doesn't understand generalities like "tell an adult". And then there is the fun of trying to teach him to understand the difference between being hit on purpose and being hit on purpose. When Lizzy comes around a corner and runs into him, it was an accident, but Darin sees it as being on purpose. There are just so many outcomes to try to teach and learn from. Perhaps Mr. Darcy didn't realize the girl doesn't always accept proposals.

But perhaps the glowing neon sign of Mr. Darcy's autism occurs a little earlier in the story. Elizabeth is talking to Mr. Darcy's cousin Colonel Fitzwilliam about how Mr. Darcy didn't make a really good impression when he came into the country. She tells Colonel Fitzwilliam that Mr. Darcy hardly danced with anyone at a ball where there were plenty of women who had to sit out because there weren't enough men for everyone to have a partner. Perhaps Mr. Darcy, even though undiagnosed, was aware of his own difficulties: "I certainly have not the talent which some possess," said Darcy, "of conversing easily with those I have never seen before. I cannot catch their tone of conversation, or appear interested in their concerns, as I often see done." There! He admits that he can't really read a room. He can't tell from a person's tone of voice how they are feeling. He doesn't know how to appear to be interested when he really isn't. He doesn't know how to put on a "social face". And he doesn't know what would be socially acceptable to talk about with people he is meeting for the first time.

At this point, Elizabeth gives Mr. Darcy the only advice for an autistic person - practice. Yes, it might be hard, but there are hard things for all of us. Elizabeth points out that she doesn't play the piano very well, but she acknowledges that is because she doesn't practice. To other people, it will come naturally, but without practice, she'll never play very well.

So, given time, Mr. Darcy is able to put on a better performance. It seems very stilted at times, as though he just just trying to remember to put one foot in front of the other, but at least he is still trying. I know Darin tries to do what he should, but I can tell there are times when he is more focused about it and trying to remember all of the steps. Some things come naturally to him now, but I know it will be a life filled with trying to remember all of the steps. And there will be times when he will need understanding when he forgets some steps. I think this happened for Mr. Darcy. When Elizabeth tells Mr. Darcy that her youngest sister has run off with the scoundrel Mr. Wickham, Darcy seems to forget that social decorum would state that he would be very attentive to Elizabeth. When he first recognizes her state of distress, he is very attentive, but when he learns the cause, he seems to forget the appearance of attentiveness. Sure, he is thinking about what he can do to remedy the situation, but he left of the "social decorum" in the meantime. And when he does leave, it seems to be very abrupt. Elizabeth could have mentally accused Mr. Darcy of being the proud arrogant person she believed him to be at the beginning of the story, but she takes the blame upon herself. She sees her own sorry state of affairs and does not blame Mr. Darcy for beginning to distance himself from her. She has come to more fully understand him, and while she may not understand that perhaps it is autism, she doesn't blame him for his loss of "social decorum".

And the course of the story taught Mr. Darcy a few things. Among them, perhaps, is that being autistic, he may not be able to correctly interpret facial expressions. Sure, Mr. Darcy and Elizabeth exchange a lovely look when Elizabeth comes to Mr. Darcy's sister's rescue at the mention of the scoundrel Mr. Wickham who had played falsely with Mr. Darcy's sister, but Mr. Darcy does not trust himself to interpret this as a complete change in Elizabeth's feelings for her. Sure, he does rush off to her the next day and perhaps may have tried to win her over again if he hadn't happened upon Elizabeth upset over her sister's actions. We'll never know what his intentions would have been had that meeting been happier. But even after he has helped Elizabeth's sister and been key in reuniting Jane and Mr. Bingley, he doesn't trust himself to be completely in Elizabeth's good graces. He does not act until he hears how Elizabeth wasn't rude about him to his own aunt. That is when he has hope. He waits for someone else's interpretation of the circumstances before he acts.

So, perhaps if Mr. Darcy had been properly diagnosed, Elizabeth would have been able to be a little less prejudiced and Mr. Darcy would have perhaps been a little less proudly aloof. But then again, if they were, there wouldn't be much of a story.

Temple Grandin

I watched a really great movie last night - Temple Grandin. It is about this woman who really overcame her Autism - and she did it at a time when Autism was really misunderstood. I was blown away when the doctor who diagnosed the Autism told the mother that the Autism was caused by a crucial time in Temple's life when her mother didn't show her enough love. I'm so glad we've gone beyond that point and realize that's a horrible untruth. I can't even imagine being that mother and being told I'm to blame for my child's condition.

There were some really good spots throughout the movie where it showed what life is sometimes like for autistic people. When someone would tell her something in a figurative sort of way, she would picture it very literally. Even phrases like "Animal Husbandry" that we take for granted, she pictured a groom and a cow wife. And when her teacher told her to picture opportunities as doors to walk through, she would literally picture doors.

It was also nice to see how Darin's autism could be worse. At least he is growing up in a time when it is more accepted and understood. At least he is comfortable making eye contact. At least he enjoys being held and hugged. At least there are glimmers of time when he seems to understand the expression of an emotion. At least he doesn't have too many environmental triggers.

And here's hoping he'll be as smart as Temple Grandin. I certainly think he is.

Explaining Autism

I was watching "The Biggest Loser" last night and they kept having commericals for the TV show "Parenthood" that would be on right after "The Biggest Loser". I was bothered by the commercials because it showed some parents letting it slip to their son that he has Asperger's Syndrome, which is a form of Autism. The kid on the show appeared to be about eight years old, and Scott and I both thought it would be weird that the parents couldn't talk to their son about Asperger's because be both know we won't have a hard time talking to Darin about Autism.

I was even more irriated with the show when the first few minutes started and it was the parents trying to explain to their child about Asperger's. You would have thought they were tell their son he had cancer and was about to die. The mom was bawling, the dad was stumbling over his words and getting choked up. Really? Is having Asperger's like the end of his life? I couldn't keep watching the show, so I hope they cleared it up for the poor kid, but I think it was some horrible television.

Darin having Austism is not a travesty. I don't think Darin is going to have a horrible existence on this earth because he has Austism. Yes, he's going to have to work harder on some things, but other things will come easier to him. We all have things we have to struggle with and overcome, but having Autism is not like having cancer.

I believe Darin won't struggle with understanding his Autism when he can finally understand he does have Autism. Sure, there will be times when he won't really recognize how his Autism is making him behave, but he'll see it in retrospect. And he's inquisitive, so I'll always be open to his questions and helping him any way I can. And I won't be sobbing hysterically when I talk to him about it.

The Blessings of Failures

We took Darin in today to be evaluated for the autism therapy trial at BYU. He passed all the tests with flying colors. That meant he wasn't eligible for the therapy trial. I had a sinking feeling when the director told us that, but it was quickly followed by an offer to use Darin in their diagnosis class beginning in the Fall. Darin will be a guinea pig for graduate students who are being taught how to recognize various behaviors in developmentally delayed children. After the diagnosis class is over, they will continue to help Darin with what he needs. WE GOT DARIN INTO THE BYU SPEECH THERAPY CLINIC!!!

As for the tests he went through today, it was all about how Darin interacted with the graduate students. I've never been more happy to see my son fail. He was willing to play the games they wanted to play. He was pretending his dog was licking ice cream. He would drive his car around and stop when the light was red and go when the light was green. The best moment came when they pointed out one of the toys was holding a little cat. Darin pretended his dog toy was scared of the cat and ran away. Everyone was laughing about that, and of course, in true Darin fashion, the positive response meant he wanted to continually have his dog toy run away from the cat.

The transition of leaving all of the new-to-him toys was difficult, but he was distracted for awhile by being able to push the handicap button that automatically opened the door. He also almost pushed the fire alarm thinking it was the way to open the second door (luckily, the fire alarm wasn't a push button system, so it would have taken him quite a bit of effort and a lot of distraction of all of the adults to allow him to trigger the fire alarm).

So, I've never been more thrilled that my son failed. He'll be starting a long term therapy process at BYU in the Fall - and he'll be able to help all of those lovely new graduate students learn how absolutely adorable he can be when he's in a good mood.

Mental Switch

Have you ever felt like you would really like to have a switch in your brain to turn certain automatic responses or feelings off?

I wish I could turn off the paranoia of being watched or judged. I try to tell myself that I don't care what people think. I try to tell myself people aren't thinking what I believe they are thinking. When I'm somewhere with Darin and he has a meltdown, I wish I could turn off the part of me that is worried about what people are thinking. When I see Darin's fingernails are getting long and jagged and dirty, I wish I could turn off the part of my brain that worries about what his teachers must think of his mother. If I could turn off that part of my brain, I might have been able to delay the struggle of last night. I wouldn't have had my son in a vice grip to clip his fingernails. I might have waited for a time when he would be willing to have it done.

If I had mental switches, I could turn off the part of my brain that was frustrated by Darin's behavior. I could have turned off the part of my brain that cared what Darin's fingernails looked like. I could have turned off the pain from the cramping in my hand from attempting to hold Darin's hand still so I wouldn't clip something I shouldn't.

If I had mental switches, I could turn off the part of my brain that wonders what it is like to have a child who understands the needs for basic grooming like haircuts and fingernail trimmings. A child who understands that sometimes it isn't fun to get clean, but it has to happen. A child who won't scream and struggle while his mom attempts to perform these basic grooming needs.

Glimmers of Happiness

OK. Raising Darin isn't all doom and gloom. There are glimmers of happiness. Like this weekend when I was having "mean Mommy" moments. I had just enough of double-don't-do-that duty and I just walked into the kitchen and had a good cry. Not only did Lizzy not do her normal reaction of wailing her own set of tears at being told not to do something, she came over and put a comforting hand on my knee. And then one of the blessings in my life, my little son Darin, came over and asked me, "What's the matter?" For him to recognize my pain was a glimmer of happiness.

And today I received another glimmer of happiness. The BYU Speech Therapy Clinic called today about possibly putting Darin in a trial therapy program. They are looking for high-functioning autism children for a 10-week study. He would go twice a week for 50 minutes - and it would be for free. The Director of the Clinic is running the trial and she is the one that called me about it.

They are getting ready for my little boy. They asked if there was anything he particularly likes and if there was anything that gets him upset they could avoid. He loves golf. He'll hit a whiffle ball around the house with a plastic bat just to play golf. He loves to play golf on the Wii. He loves Batman. He has a Batman shirt my mom gave him for Christmas that he loves to wear. He plays Batman Lego on the Nintendo DS. He loves getting dressed up as Batman (and occasionally as Superman). He only really gets upset when we need him to transition. He is a pretty easy-going kid. He loves Batman and golf. That's what I told them. I told them what makes my little boy happy - and having this opportunity for my little boy made me happy.

Now, if you'll excuse me, I have to surf the net a little more. I'm making plans for how I'm going to make my kids' birthdays special. I know it is still a few months away, but I'm a planner. And my kids are going to get special birthdays. Batman and golf for one, pink and princesses for the other.

My Life as a Broken Record

I look at families with multiple children and I'm a bit jealous. I'm not jealous because of the number of children they have. I'm perfectly content with the two I have and the one I hope to be worthy to raise in the next life. I'm jealous because their younger kids can learn from the older kids. They talk and walk and do so many things sooner than their first child did because they emulate their older siblings.

The problem is that younger siblings DO emulate their older siblings. Lizzy emulates Darin and since Darin doesn't have the same skill sets as other 4-year-olds, it isn't very helpful. And the joy doesn't stop there. Darin loves to emulate Lizzy. And to the two of them, it is all a fun game. And Mommy has her part to play. When Lizzy climbs on the back of the couch, Mommy tells her to not climb on the back of the couch. Those are the magic words. Those are the words that cue Darin that he needs to climb on the back of the couch and have his turn. The game isn't complete if Mommy doesn't also have to tell Darin to get off the back of the couch. And it is funny to them. It is frustrating to Mommy, so very frustrating.

I sometimes wonder what it would be like if my younger child were the autistic one and the older child had developed in the "normal" way. Would my life be a little bit easier? Would the younger child who had the tendancy to mimic behavior because they don't understand how they are "supposed" to behave be better behaved because of the example of a "normal" older sibling? Would it have worked? Would my life be easier now? Because this broken record wants MP3 file - plays smoothly and doesn't get scratched. This broken record is tired of having to repeat herself and watching her two children repeat each other.

An Intricate Dance

Raising a child with autism is like trying to learn an intricate dance being choreographed by an extremely talented choreographer. You are always trying your best to learn the steps, and just when you think you are getting the hang of it, the choreographer makes a few tweaks to the routine. You have to pick up on the slight differences, the steps that have been removed, the steps that have been added. Unfortunately, the choreographer expects you to know these changes instinctively. And just like any great artist, they get frustrated by the delay in the process when you need time to learn.

An example of one of Darin's intricate dances is bedtime. He picks out his pajamas, but I have to make sure I call them "sleepings" because that's what he calls them. He gets his wipes and his clean pull-ups (no potty training yet, but that's for a different posting). He gets his laundry basket. He makes sure all of these things are on the bed before he gets undressed. He takes his shoes off, puts them together, and put them back in the closet. Once he is undressed, that's when it becomes a dance for me. Sometimes he let's me get him clean before his new underwear. Sometimes he needs to do it all by himself. Sometimes he'll let me help. Once he's all dressed, he gets into bed, I have to ask him what color his glowstick is and we tuck it behind his shoulder. We count his blankets as we put them on. We take inventory of all the things he "needs" to go to bed. I have to say the same words, give him a kiss, blow him a kiss, and say goodbye. If I miss any of this routine, it's like something snaps. He doesn't have a meltdown, but he gets upset. If I can figure out what is off for him and fix it, he snaps right back into the adorable little boy I know. If I don't figure out what is wrong, that's when the meltdown happens. That's when he loses the ability to really tell me what's wrong. That's when we have to resort to showing. He isn't calm enough to use his words, so we have to show.

That's when it gets hard for me. When my son is so frustrated that he loses grasp on his only basic communication skills, that's when it really hits me that I can't really talk to my four-year-old son. The extent of my conversations with my son are yes/no questions and giving him choices where he'll repeat his choice back to me. He doesn't spontaneously say I love you. He only says I love you after I've said it. And considering he repeats a lot of what he hears right after he hears it, it is difficult to believe that he understands what he is saying to me.

Luckily for me, I know he loves me. The way I know this is because of the 30 seconds I get with him when I come home from work. When I walk in the door, I hear, "MOMMY!" and he comes running to give me a hug. That's when I know he loves me. That's the 30 seconds I look forward to every day. Sometimes, it is the best 30 seconds of my day.

Why

There are so many times that I have wanted to write about our successes and set-backs in raising a child with autism, but I didn't want our family blog to seem to be all about Darin. I didn't want stories of our struggles surrounded by stories of our kids playing minature golf and helping bake cookies. I've wanted a place to write about Darin and now with a little encouragement, I've started one.

I wanted just the right title. I tried to make it cute with alliteration, but I didn't want to make light of the situation. I also didn't want it to be too serious or clinical. This blog isn't about talking about the broad strokes of autism or the politics or medicine of autism. This blog is about my son.

You can read all of the books and studies about autism. Sometimes they just don't help. My child is unique, just like every child is unique. Maybe something I write here will help someone I know understand how I raise my child. Maybe something I write here will give someone else an idea of how to help their child, autistic or not. Maybe something I write here will touch someone who needs it.

About a year ago, I had a personal revelation regarding being a parent to an autistic child and about being a parent in general. I wrote about it in my blog and soon thereafter, I had people calling me or writing to me about how they hoped they had never treated me in such a fashion. I don't write in my blog to call people to repentance. I write in my blog for a personal release of emotion. I'm not here to lecture. I'm not a perfect person and I never will be, so I'll never writing to lecture.

So, unlike things named "Sewing Made Simple" or "Cooking Made Easy", this is Autism Made Real. A blog about a real little boy and the lessons learned by this imperfect mother as she tries to be the person he needs.