She got less because she needed less

I started this blog because of Elle. When I got pregnant with her I wanted a way to keep my friends and family updated on my pregnancy.  In retrospect I probably vastly overestimated the interest my friends and family would have in my pregnancy.  I think sometimes when you're a woman who's experiencing the agony and the ecstasy of her first pregnancy you think everyone else is going to be as fascinated by every little twitch and twinge as you are.  Of course no one really is but that's ok.  It fun to share.

Over time this blog evolved.  I talk a lot about myself now, about my surrogate pregnancies, about raising the kids, about any little thing that pops into my head.  I post a lot less than I used to but now I think of this blog as more important than I ever did before.  Perhaps it's morbid but sometime around the time I gave birth to Little A I started to think that if something bad were to ever happen to me at least the kids could go back and read my blog.  In that way they could know me and know how much I love them and maybe look back and laugh at some of the good times we shared together.

I had such big plans for what I wanted to share yesterday on this blog.  I wanted to talk about how Elle turned six years old.  I wanted to share her excitement about the whole day and how when I picked her up from school she was nearly vibrating with the pure joy of being six. I wanted to talk about how she used about eight pounds of sprinkles to decorate her birthday cake and how she put such thought into picking out an ice cream flavor she thought everyone would like.  I wanted to talk about how she squealed with delight over every present she opened and how when I put her to bed she told me "I've been waiting my whole life to be six years old!"

All those things happened and they were wonderful but the day, on the whole, was not wonderful.  It was the kind of day, the kind of week really, that had me shaking my head and feeling totally at a loss.

For the past week we have been dealing with Joseph being unable to deal with the fact that it's Elle's birthday.  He's too jealous.  He's too rigid.  He can't deal with the fact that Elle gets something that he's not getting at the EXACT SAME TIME!  We've spent the days now gently reminding him that yes, Elle gets some special stuff but he had a big party on his birthday day and he got to pick out the flavor of ice cream that he wanted.  We've less gently reminded him that yes, Elle gets to open presents on her birthday but that on his birthday we all sat around and watched him open presents too.  We've exasperatedly gone over and over the fact that yes, one time we went to Disneyland for Elle's birthday but that we also went to New York for his.

None of it mattered.  There were tantrums and melt-downs and general terrible behaviors all day long.  As Elle stood in the frozen food section and picked her ice cream flavor Joseph pouted and made rude comments.  When she said she wanted mint ice cream Joseph screamed and gagged.  Elle looked worried and said "I'll pick something else."  I assured her that mint was a fine choice and that she could get that if she wanted.  Joseph screamed "Oh sure, give Elle whatever she wants!  Elle is the most special and I am just boring old Joseph!"  She didn't pick mint ice cream.

When a few people came over for cake and presents Joseph spent a good portion of time in the bathroom wailing because no one was paying attention to him.  Later Jesse had to take Joseph into the laundry room because he was having a melt down over Elle getting such good presents.  We turned on her new toy guitar to drown out the sound of him yelling.

I was so angry yesterday.  And I was just so sad.

From the time Elle has been baby she's always had to give so much.  She's spent hours and hours and hours of her life in waiting rooms while Joseph has had various therapies.  She's had to be pulled out of school early so that I can get both of them to Joseph's appointments across town on time.  She wants to say hi to Joseph when they pass each other in hallway at school but she's learned not to because it upsets him.  She's had countless conversations and playtimes with me cut short because I have to deal with something Joseph needs.

Elle, if you read this someday, I'm sorry.  I'm so sorry that you got less.  Less attention, less time, less understanding, less consideration.  You needed less and so you got less.  I always tried to make it even and to work it out but I know it wasn't fair and I'm sorry.

But also know this - on the day that you were six years and one day old, your mom went out and bought you a carton of mint ice cream for you to eat all on your own.

Two years ago today Elle was four.
Four years ago today the kids were getting older.

It-sa Friday

Never let anyone tell you that people with Aspergers don't have a sense of humor.  This afternoon Joseph serenaded me with a rendition of Friday with Rebecca Black as Jar Jar Binks.

"Riding in the front-sa seat, kickins in the back-sa seat, which seat me-sa take? We, we, we-sa so excited, we-sa so excited!"

Teasing!

Joseph has discovered teasing.

More accuratly, he has discovered that he can accuse people of teasing him.  If I had a dollar for every time he has screamed at us "You're teasing me!" in the last week I could afford to take the luxury cruise I need to take in order to recover from, um, this last week.

He yells at us that we're teasing him if we say anything about him.  Anything.  Even good things.  When I mentioned to Jesse the other day what a good job Joseph had done on his spelling test Joseph shreiked from the living room "You're teasing me!  You're saying I'm not good at math and that's teasing!"  When I tried explaining to him how I was not teasing him he accused me of teasing him by saying he didn't know what teasing was.

We even get accused of teasing when we're not talking about him.  Yesterday at dinner Elle was saying that if you went outside without a hat on then you might get snow on your hair.  "You're teasing me!" Joseph yelled.  "You're saying that because sometimes I don't wear a hat and I get snow on my head and that's teasing!"

When I told him a story about a time I was a kid and I fell off my bike?  Teasing.

When I asked him if he wanted peanut butter on his toast?  Teasing.

When I reminded him to put his school book away in his backpack?  Teasing.

When I said I thought a preview for a new movie looked dumb?  Teasing.

When I said the next person to accuse someone of teasing was going to have to sleep in the garage?  Teasing. Teasing! TEASING!

Oddly enough we're still able to do our "Rudest Family Ever" routine* without being accused of teasing.

I'm not sure if this is a case of him genuinely misreading what's really going on or if it's him being a little manipulative and trying to get a reaction out of us.  Either way it's driving me bonkers and I don't know how to get it to stop.  I suspect that like many things Joseph related it will just have to run it's course.  For whatever reason he needs to try this out and see how it feels.

I'm trying to be sensitive to the fact that really doesn't always get social cues and interactions.  It's possible that he really does think we're teasing him when we talk to him or about him... or dare to take a breath in the same room as him.  It's possible that he's sensitive about something else and he needs to get that out and screeching at us about teasing is a easy way for him to release some tension.  It's also possible that he's just being kind of a butt right now.

Whatever the case we're all kind of walking on eggshells right now.  No one wants to be the next one to incur the wrath of Joseph. 

Teasing!

*I taught this to the kids and it goes like this:
Person 1: That movie looks funny! (This can be substituted with any number of things looking any number of ways.  Cheese looking moldy, water looking dirty, car looking fancy, whatever.)
Person 2: You look funny!
Person 1: Your face looks funny!
Person 2: Your butt looks funny!
We are sophisticated and elegant.

Two years ago today my face collapsed.
Three years ago today Elle wanted malk.

Be sure to read to the end for the REALLY good news!

Last night I had a phone call with a new potential Intended Mother.  I had been nervous leading up to the call but it seemed to go really well.  When Jesse asked me about it I said "She was really nice!  She spoke perfect English!" and then I felt like an asshole and sort of a racist.  Really I just meant that even though this is an international couple I don't think we will have a language barrier to overcome.  So that's nice.  She also sounded really eager to move forward quickly and that's good with me.

Now I just have to wait and hear if she wants to move forward with me.  Fingers crossed!

But here's the really good news!  When I was done with the phone call I found Joseph laying on the kitchen floor (shirtless and wrapped in a blanket) (of course) and he looked at me and said "So how did it go?"

Did you get that?  He asked me how something I did went.  It wasn't something that involved him and it wasn't about video games or Vinylmation or 39 Clues books.  He wanted to know how something I care about went.  Ok, so he didn't really bother to listen to my answer but he asked!  It made me happy and that is the REALLY good news I wanted to share.

BUT WAIT!  As I was spell checking this I got a call that the Intended Mother wants to move forward with me!  Woot!  So now I have two pieces of good news to share.

Two years ago today I was sick ... in a lot of ways.
Three years ago today I shared Little A's birth story.
Four years ago today I did some drawings.
Five years ago today I was random.

My #1 tip for traveling with a child with Aspergers

Earplugs.

It's as simple as that.  We make a point of taking earplugs whenever we visit an amusement park or a water park or any other place that's crowded with people, voices, sights, smells and sensations that might be overwhelming to Joseph.

Joseph doesn't have a problem with sounds in general (although high pitched and sudden loud noises bother him) but the ear plugs help him filter out some of the sensations bombarding him.  When we hear the dull roar of an amusement park he hears a kid asking for cotton candy, the squeal of a roller coaster, a cash register ringing, the clink of ice dropping into a cup, a teenager laughing, a baby crying, all of that multiplied times a million.  The earplugs help him filter out the "extra" noises and let him focus on other sensations.  He can see more, experience more, when he has to hear less.

As an added bonus, for some reason when he's wearing the earplugs he able to modulate his voice better.  I don't know if it's because he's able to hear himself better or what it is.  What I do know is that with his earplugs in he's able to use his "indoor voice" and "outdoor voice" more appropriately.

Also, Joseph's behavior in general is better when he's wearing earplugs.  He has fewer meltdowns and he even seems less "rigid".  Again, I'm not sure why it works but I'm sure glad it does. 

Certainly some kids with Aspergers may be bothered by the sensation of having earplugs but Joseph enjoys the benefits of them so much that he doesn't mind wearing them at all.  In fact, on our recent trip to California he asked for them if we forgot to offer them.

So there you have it, my number one tip for traveling with a child with Aspergers: earplugs.  Hey, it's worth a try right?

Two years ago today I had a wild weekend.

Four years ago today Joseph came home from a trip.

Five years ago today I was so BORING.

I won the 4th grade jackpot

Let me go on record as stating that I HATE homework.  Sitting down and forcing my kid to do worksheets ranks right up there among my least favorite parenting tasks.  It's torture for both of us.  Joseph has had more homework related meltdowns than I care to try to count.

For the past two years Joseph's school has had an hour long after school Homework Club three days a week and that has helped some. He's been able to get most of his homework done there and when he's doing it in a group he thinks of it more as extra time he gets to spend with his friends and less as stupid, pointless busy work that was assigned to him because everyone hates him and no one ever wants him to play video games ever again and OMG HOMEWORK IS EVIL!

So Homework Club really helps but this year we might not even need it because, brace yourself for this, Joseph got a teacher that does not assign homework.

I almost passed out with joy when I heard the news.  She says that her philosophy is that there is always more learning and working for kids to do but that she doesn't think worksheets are productive or helpful.  She expects the kids to do things like reading or flashcards at home and they still need to study spelling words and sometimes they might need to work on a big project at home but there won't be any worksheets.  No.  Worksheets.

Woo freaking hoo.

Oh, and on top of all that awesomeness?  Joseph's new IEP case manager specializes in autism and she's arranged it so that if Joseph is ever feeling stressed out or overwhelmed or upset (or any of the other seven billion things he can be going through) he can ask for her and either she or her assistant will come and take him out of the class room.  He can go to get a drink or take a walk in the hallway or take a short break in the library or the motor room or whatever he feels like he needs.

Woo freaking fracking hoo.

Can I tell you how happy and grateful I am that Joseph has such an amazing team to work with?  I'm so thankful that the people at his school seem to recognize his needs are are working proactively to meet them.  I lurve them.  And not just because of this stuff.  Also because when Joseph sits in his desk his little legs dangle down and don't touch the floor because he's so short so they had him measured and got him a little footstool to rest his feet on and he said it helps him sit up straighter and write better and he doesn't get so tired!  Squee!

Is happy his little legs no longer dangle and that he now has more time after school to memorize video game guides.

Three years ago today I should not have been allowed in a grocery store.
Five years ago today I talked about my cervix.  Of course.

The kids are all right

Joseph has been playing soccer for five years now and in those five years he has never scored a goal.  Not a single one.  The fact is, he's just not very good at soccer.  He doesn't have the coordination or the motor planning or really even the attention span needed to be good.  He doesn't really care though.  He doesn't care that me spends half of the game staring off into space and the other half running in the wrong direction.  For whatever reason he likes soccer.

In the past it's been enough that he liked playing.  All the kids he played with were kind of in the same boat.  They didn't really know what they were doing and they were just out there to have fun and try hard.  This summer has been different though. All of the sudden everyone seems to know what they're doing and how to play.  They're aggressive and good.  Really good.  In fact, Joseph's team has never lost a game.  Now in some ways that's great because Joseph feels like he's part of that, that he has something to do with them winning.

In other ways it's not so great.  Sometimes the kids on his team get frustrated with Joseph for not knowing where to stand on the field or flinching when the ball comes by him or for forgetting that he can use his hands when he's the goalie.  It's painfully obvious that his skill level is so far behind the other kids and they aren't always kind about it.  I don't think that they're trying to be mean exactly but they can be pretty vocal when things don't go their way.

As a parent it's hard to watch your child struggle and not fit in.  There have been plenty of times when I have wanted to march onto the field and grab those kids by the shoulders and say "Be nice!  He's such a great kid!  He's funny and smart and kind and interesting and it doesn't matter if he can't kick the ball even it's at a dead stop three inches in front of him!"

Last week my frustration with the situation hit a new high.  Jesse had left work for a while to come to the game and I knew that Joseph was trying extra hard so that he could impress his dad.  If he would get anywhere near the ball someone else would swoop in and take it away.  He never even got a chance even though he was running as hard as he could.  After another kid scored a goal Joseph tried to give him a high five and the kid ignored him.  "I hate these kids, I hate them all." I muttered to Jesse.

I even took it to facebook. "I know that Joseph might not be the best soccer player in the world but he's a really nice kid. That puts him miles ahead of some of the other little shits on his team."

And then, something amazing happened.

After halftime the coach pulled Joseph aside and had him stand on the field near the other team's goal.  He kept his hand on Joseph's shoulder and reminded him to keep an eye on the ball.  And the kids on his team? They kicked the ball to Joseph.  On purpose.  Over and over and over.  Even when they had countless opportunities to score a goal themselves they kicked the ball to Joseph.  Every time someone from the other team kicked it away Joseph's team brought it right back to him.  They yelled encouragement and directions and cheered him on.  This went on for a good five minutes, the entire team clustered around him, helping him out.

And then Joseph scored a goal.


I couldn't really see through the crowd of kids when it happened but I heard him yell "YAY!!!!" and saw his little arms waving around.  When the crowd broke up I could see him hopping around and cheering.  I watched the kids give him high fives and congratulate him and I cried.  Oh how I cried.


I was still weepy when the game ended a few minutes later.  Joseph came over to me (or rather, strutted over) and said "Did you see it Mommy?  Did you see that I made my first goal ever?"


"I did babe!  You did so great!  I'm so proud of you!"


"I'm proud of me too.  I'm also proud of my team because we all worked together and I couldn't have done it without them."


Waterworks again.


Joseph told me that during halftime the coach said they wanted everyone to get a chance to get a goal this year so the coaches are to thank for putting it into motion.  The kids are the ones that really came through.  They didn't have to go along with it.  They could have gotten annoyed with the whole thing and given up.  They could have used it against him and been unkind about it.  They didn't though!  In fact, in the game since then I noticed a big chance.  When Joseph stood in the wrong spot on the field the kids gently directed him to the right place.  No one crabbed at him when he missed an easy shot or let the ball go through his legs as he was playing goalie.


I noticed a change in Joseph too.  He seemed more confident, more aggressive, more like he was really part of the team.  I know that one goal meant more to him than the other five years of soccer put together.  He doesn't feel like that goal was handed to him.  He feels like he had to work for it and that he was just a part of the team that made it happen.  He told me he's never going to forget that moment and I don't think I will either.


And the kids on his team?  Turns out that the little shits aren't half bad.

Being a mom doesn't mean not having feelings

Long ago I had a job at a grocery store located in a bad part of town. I quit the job when I got married. Then, a couple of years later I returned to work at the same store, this time as a cake decorator. What I didn't know when I was hired was that the store was experiencing a big problem with employee theft. I found that out when the company's loss prevention department started an investigation and I was named as one of the people stealing.

When I was "questioned" regarding my involvement I was told that I had been named by one of the stock boys as someone who was stealing from the store. Why? I was never able to figure that out. The people stealing were largely high school aged cashiers and stock boys most of whom I never had any contact with at all. When I was asked about certain people's involvement in the "theft ring" I had told them that honestly I had no idea who the people they were asking about even were. The person questioning me seemed to think I was trying to cover for people and got angrier and angrier with me.

I was sent home from work that day and told I would be called in a few days about my "employment status". All the "evidence" they had been able to gather against me basically amounted to one time I had to take a pill with food and someone from the deli gave me a corn dog that was going to be thrown out because it was old.

Three days later I got a call saying I was fired. (On the exact same day we were going to court to finalize Joseph's adoption. So yeah, that was awesome.) I was humiliated and hurt. I had never been fired from a job before and to be fired for the reason I was, was extra painful.

Several of my former co-workers encouraged me to fight my firing and for a while I considered it. Jesse and I even spoke to an attorney who advised us that there was nothing he could do for me since I had been prosecuted for stealing. When I told him I had never actually been prosecuted he was pretty surprised. As it turns out the company I worked for ALWAYS prosecutes shoplifters. Always. Without exception.

So why wasn't I prosecuted? I really think it was because I wasn't fired for stealing. I was fired because the loss prevention person questioning was angry that I didn't help out his investigation. It didn't matter that I didn't actually know anything. He thought I did and he thought I was hiding something and that made him mad. And that was all it took. Minnesota's wonky laws allow a company to fire an employee for any reason at any time so in the end, even though I was fired without cause, I still didn't have a leg to stand on legally.

The whole event was pretty hurtful but you, know, life goes on. I got past it. Jesse now works for the same company that I was fired from. I've been to several office Christmas parties with the same people who "investigated" me. I've been to the head office several times to bring something to Jesse or to pick him up and take him to lunch. I have been in the vacation condo of the company's owner. I've even been on his boat. Joseph sat on his lap and helped him steer the boat! Company higher ups call our house all the time to ask Jesse for help with computer problems and I can have a friendly chat with them. I was even actually rehired by the company at one point. (Once the loss prevention person got wind of it he quickly had me refired with some lame excuse about paperwork not being done right but WHATEVER!)

The point is, I'm over it. I don't really think about it these days.

Most of the time.

The other day my mom took the kids over to my grandma's apartment. Several of my aunts and uncles were there visiting. Somehow the company that I used to work for came up in conversation. Joseph decided to cheerfully offer up this little fact: "My mommy used to work there but then she was fired for stealing!" Neither he (or my mom for that matter) decided to actually tell the entire story so everyone in the room got to hear the very worst part of the story and that's it.

When my mom called to tell me this a couple of days later I was pissed. I got off the phone with her and said to Joseph "I don't like you telling people that I was fired for stealing." He got a horrified look on his face and said "Oh no! Did T--- call you and tell you I told him that?"

By the way, T--- is his IEP case manager. Meaning not only has Joseph been telling family members this little story, he's also been telling people at school. And god only knows who else.

And you know what? It really, really upsets me. 99% of what Joseph (or even Elle for that matter) does I can laugh at as a parent. Even if they're little stinkers I can find humor in it. Not to say that I never get upset or angry at my kids but most of the time, by the end of the day I've managed to find a way to smile about what ever they've done.

Not this time though. People have told me that I shouldn't be upset about this because Joseph can't help what he says. I know it's true. I know that because of Aspergers he's missing that internal filter that says "Stop! This is not ok to say!" I don't think he said that stuff to be hurtful. The fact is though, he said it and it is hurtful.

Being a parent is hard and being a parent of a child with special needs is ... special hard. It means countless doctor and therapy appointments. It means juggling the imprecise science of finding the right mix of medications. It means managing, re-teaching and yes, even tolerating atypical behaviors. It means putting your own needs aside and focusing on what your child needs. Most of the time I think I do a pretty good job at that stuff. But dammit. Sometimes it's hard.

He may have Aspergers but I still have feelings.

One year ago today my brother and I debated politics.
Two years ago today I had Halloween overload.
Three years ago today I was ... drunk or something.

All fired up and nothing to fight for

Remember that IEP meeting I had yesterday? The one where I was all prepared to go in fighting for what I thought Joseph needed? Well, I marched into that meeting all fired up and ready to go. I sat down at that table full of people and in my firmest, most confident voice I said "I want cursive dropped from Joseph's curriculum!"

Joseph's teacher and IEP case manager glanced at each other and said "Yes. We agree. We were already thinking that."

"Oh" I said, my firm, confident voice faltering. "Well then. Ok. I also want him to ...."

"Learn to use a keyboard?" they asked. "We already thought of that. And to have summer school? And access to a separate dining area at lunch from him and hs friends so that he's not overwhelmed by the noise of the lunchroom? And to continue adaptive phy. ed. services while remaining in his regular gym class? And to have meetings once a week with our special education counselor to help him deal proactively with any issues or anxieties that come up for him? And to have continued access to a shared paraprofessional?"

"Yes please." I said. "All of that thank you."

And then I quietly snuck out of the room before anyone could change their mind.

I am beyond happy with how the meeting went. We are so lucky to have people on Joseph's team who really see his needs and recognize how to best meet them. I can't come up with a single complaint about that meeting, everything went better than I could have hoped for.

Well, I guess I have one complaint. I had all this nervous energy built up over this meeting and it all turned out to be for nothing. Now I'm all fired up with no where to go. All this wasted energy is making me irritable. (Also making me irritable is the fact that there's a blizzard going on outside on a day I have appointments scattered all across town.) I'm in the mood to kick ass and I have no ass to kick. Anyone need any asses kicked? Preferably in warm, blizzard-free climates? I'm free later today.

Seriously. You would be doing me and the people around me a favor.

One year ago today I shared funny avatar with you and it looks like it was snowing that day too.

Cursive, shmursive

I have an IEP meeting at Joseph's school today. My plan to ask them to drop cursive writing all together. I also want to ask that he instead be allowed to work on a keyboard practicing proper finger placement during the time other kids are working on cursive. Typing is a skill that he will get far more use out of than cursive so it seems like a logical replacement. For me it does anyway. I hope the people at the school agree with me.

We've been very lucky when it comes to getting Joseph what he needs on his IEP. We've never faced a battle to get him services. I have heard some real IEP horror stories but we've never had anything like that. I think part of it is that Joseph is extremely high functioning and that his needs don't require a ton of accommodating. In fact, most of what's on Joseph's current IEP is stuff that people on Joseph's "team" at school have suggested. I just hope that they're receptive to change like this. I think it's the best thing for Joseph and I hope they can see that too.

Keep your fingers crossed that my boy gets what he needs.

Two years ago today I loved boobies. A lot.
Three years ago today I continued my quest to become the the most boring mommy blogger ever.
Four years ago today some crazy bitch suggested I name my child Coco Cabana.

Because he's mine, I walk the line

When it comes to school for Joseph I feel like I'm walking a fine line between coddling and facilitating. For example, Joseph's teacher realized very early into the school year that it wasn't really working for Joseph to take part in the daily group reading activity. It was too much for him, the noise the activity, the having to pay attention to what everyone else was saying. It was throwing his whole day off. The solution she came up with was to let Joseph is someone away from everyone else (like at her desk) and read his own book (often not even what the rest of the class is reading) to himself. It's a solution that works well for everyone because Joseph is already way ahead of his grade level in reading anyway and this way he's able to maintain that sense of order and control and personal space that he needs to function.

To me that is facilitating. We see his needs, look at his strengths, accept his limits and come to a solution that take all of those things into consideration. It allows him to be the best student he can be without forcing him to fit into the mold of a typical student, a role he just cannot play. Now if Joseph decided tomorrow that he wanted to go play Legos during reading time and I said ok to that then that would be coddling. I wouldn't be doing him any favors by letting him get away with less than he's able.

We had parent/teacher conferences last night and we heard the same thing we always hear. Joseph is very smart, he's a delight to have in class, the kids love him, he thrives in leadership roles and he will do pretty much anything required of him to get computer lab time. All of that was great to hear. I know what a wonderful kid he is and it's nice to hear other people say it too.

One thing about the conference bothered me though. It turns out Joseph is really struggling with cursive writing. If you've ever seen Joseph write you would know he struggles even with writing in print. Honestly, he writes like a toddler. I don't say that to mock him, it's just a matter of fact. His letters are large and floppy and sometimes backwards. To make it worse he's hard-wired himself to write certain letters in unusual ways. For example, when making a lower case "r" he makes the little arch over the top then goes back and makes the line down. A "g" is a misshapen circle with a backwards "c" beneath it. Translating those odd letter formations into a smooth, flowing way of writing is just not working for him. I honestly don't think he can do it.

And I'm wondering...... Does it matter? Does he need to learn to write cursive? Can't we just let him have his half-success at printing without making him stress about trying to master something that's beyond him? And really, who writes in cursive anymore anyway? When was the last time you used cursive for anything other than to sign your name? I don't even know if signing you name counts as cursive. Most people just sort of scribble anyway and someday Joseph can learn to do that on his own.

We have an IEP meeting coming up next month and I am very seriously considering asking that we just drop cursive writing out of his curriculum. Maybe when the rest of the class is working on cursive writing his para-professional can help him out with practicing printing. On the whole, school is such a positive experience for Joseph and I would hate for cursive writing to become a stumbling block.

So here's where I walk the line. By getting him out of cursive writing am I coddling him and making things too easy for him? Or am I facilitating a positive learning environment for him by making sure he's not facing insurmountable obstacles?

Someone should report me

Yesterday was a rough day. Joseph was just so ..... autistic.

Most of the time I think people would look at Joseph and think that he was neurotypical. Maybe a little quirky but certainly not autistic. Then he has days like yesterday that just kind of slap me in the face and say "You think things are going well? Haha! Not so fast lady"

The day started off badly when Joseph did something that upset Elle and made her cry. He didn't do it with the intent of hurting her feelings but it did and he just didn't care. He didn't even look at her as she stood next to him whimpering with big tears rolling down her cheeks. It broke my heart to see her so sad and it broke my heart to see him so indifferent. See, it's not that he's a mean kid (and really he's just crazy about Elle) but in this instance it didn't even seem to register with him that she was upset. Or rather, he realized it but it didn't matter to him.

After I had cheered Elle up I pulled Joseph aside to have a Big Talk with him. "Joseph, does it bother you that you made Elle sad?"

"No."

"No?"

"I mean yes."

"Yes? Why does it bother you?"

"Because now I'm in trouble."

"Honey, you're not in trouble but I want to to understand why what you did was not ok."

"Ok, but I need to build more Lego creations now!"

It just went downhill from there. All day long he acted rigid and intense and just plain odd. He wouldn't look at me when I talked to him. If he talked to me he would do it with his face six inches from mine, staring into my eyes, unblinking. His voice was loud and sing-songy. One minute he would claim to be starving but if I got him something to eat he would eat one bite and run away from the table. He talked non-stop about Legos and repeated silly, made up rhymes over and over and over.

The big kicker came when I asked him to go to his room and get dressed. That simple request resulted in a melt-down of massive proportions. Yelling, screaming, shrieking. It went on and on. It sounded like he was being beat. If you know me in real life or if you read my blog you know I don't hit my kids. Ever. Yesterday the melt-down went on for so long and was so intense though that a couple of times I found myself thinking "If I could just smack him, just once, maybe that would snap him out of it."

Not logical thinking and not something I'm proud of but I was sort of at the end of my rope. (By the way, I didn't hit him.) I also found myself thinking that at some point some neighbor was going to call the police. I thought any second a cop was going to pull up and check on us because some well meaning neighbor had heard Joseph screaming at the top of his lungs for 40 minutes.

But I guess I must have the most sound proof house in the world because no one came. I don't know. Maybe it's just me. If I heard a child screaming the way Joseph was screaming yesterday I would call the cops out of concern for what was going on in that house. And I really don't think that it's possible that no one heard what was going on.

Is it weird that it bothers me that no one did anything? Maybe it's because I've heard too many stories of children dying at the hands of their abusive parents and then the neighbors saying "We always heard terrible screaming coming from that house but no, we never called anyone."

Anyway. Yesterday was rough. Today will be better. If I hear your child screaming bloody murder (and I don't already know that there's a very good reason for it) I'm going to call the cops. I would appreciate it if you would do the same for my children.

No rest for the weary

It's been a month since we moved into this house. In that month Joseph has slept through the night one time. Once. All the other nights he's woken up multiple times screaming for us to "help" him go back to sleep. Some nights he falls back asleep quickly and we'll only have to spend a couple of minutes with him. Other nights he'll scream and cry for an hour or more.

Last night was a rough one. For two hours he yelled and screamed at me. I sat there and listened to him as he screamed that once corner of his room was too dark, that he was cold, that he was hot, that his head hurt, that he hated me, that the computer room down the hall was too dark, that his leg hurt, that I was the worst mother ever, that his nose was runny, that he wanted to read a book and on and on and on and on. Outwardly I managed to keep my cool and I spoke to him in low, soothing tones (only raising my voice once when he wouldn't stop screaming "Daddy! Daddy! Daddy Daddy Daddy Daddy!" at the top of his lungs) and tried to gently convince him to go back to sleep.

On the inside though I was screaming too. "Why won't he just knock it off? Why won't he sleep? Can't he see how tired I am? Why won't he just be normal?"

We're at the end of our ropes here. During the day Joseph is cranky and hyper because he's not getting enough sleep. Jesse and I are crabby, with each other and with the kids, because we're not getting enough sleep.

I just don't know what to do. We've tried everything. Everything that should work hasn't worked. Every time someone asks "Have you tried .....?" the answer is yes, we've tried it and it didn't work. In fact, instead of getting better the situation seems to be getting worse.

I don't even know why I'm posting this. Maybe in a day or two I'll regret saying "Hey internet! Come read about how horrid my kid is and what a rotten mom I am!" Maybe not. Maybe I'm just wishing that someone out there will have a magical idea that fixes everything and lets us all get the sleep that we need.

I know I said we've tried it all but my god, what do we do here?

One of a kind

Today at soccer practice Joseph was being ..... well, Joseph and one of the kids on his team sneered at him and said "Why do you act so weird?"

Without missing a beat Joseph smiled and hopped from foot to foot and said "I act this way because I am showcasing my talent which, as you know, is being goofy."

Dear world,
Please be gentle with my sweet and special boy. He deserves it. And please be patient with him as we help him learn to fit in without blending in.

Aspie honesty

Joseph really doesn't understand the concept of white lies. Lying is a pretty black and white issue for him. To him not telling the complete and total truth about EVERYTHING is a lie.

We went out to eat the other night and as we were looking at the menu I remarked to Jesse that I was totally going to blow my diet with what I wanted to order. When the waitress came Joseph waited until I placed my order and blurted out "My Mommy is trying to lose weight!"

After the waitress left I asked him why he said that and he looked at me with eyes wide as dinner plates and said "I didn't want to lie! You are trying to lose weight!"

This past school year a lot of kids were playing Transformers on the playground and Joseph wanted to play too but he couldn't because he had never seen the movie (and why had all those other kids seen it when they're in first grade and it's a PG-13 movie?) and he didn't know what to do. This was a cause of a lot of stress for him so Jesse offered to tell him about Transformers so that he could play too. We then told him that if anyone asked he could just say he had seen the movie so that they would let him play along. Joseph was dead set against this. That would be lying and it didn't matter that it was a tiny, harmless lie. A lie is a lie is a lie and Joseph will not lie.

Now don't get me wrong. Joseph is like any seven year old and occasionally he'll fib a little bit to get out of trouble. Where he differs from other kids is in how he lies. For example, if he goes to the bathroom and doesn't wash his hands I'll say "Did you wash your hands?" and 90% of the time he won't say anything, he'll just turn around and go back into the bathroom to wash his hands. The other 10% of the time he might try to lie. His mouth will scrunch up and he'll look off to the side and say "Yeeeeees. Yes. Yes I did. I mean, yes. I did wash my hands." and then he'll run off to avoid further questioning. If for some reason I don't call him on his lie he'll eventually confess to it anyway. Two hours later we'll be sitting on the couch together and he'll suddenly cry out "I admit it! I didn't wash my hands that time!"

It's like this with everything. He simply cannot lie. I'll probably be thankful for that as he gets older. I just hope that eventually I'm able to teach him that we don't need to tell everyone everything there is to know about his mother's weight loss attempts.

Interview with Joseph

I wanted to ask Joseph some questions about his perspective on Aspergers. All his answers here are exactly what he said to me in response to my questions.

Me: What is Aspergers?
Joseph: We don't really know. The world doesn't know.

M: What do you know about Aspergers?
J: That I don't like certain sounds and it's something that makes me really smart.

M: Is there anything about having Aspergers that you don't like?
J: Not much.

M: Is there anything having Aspergers that you do like?
J: Yeah, everything. I'm smart.

M: Does having Aspergers every make anything harder for you?
J: No, not recently.

M: But in the past?
J: It made it hard to eat.

M: Does having Aspergers make anything at school harder or easier?
J: Yes, because I'm good at math.

M: Does having Aspergers make anything harder or easier when it comes to making friends?
J: No.

M: Is there something you would like people to know about Aspergers?
J: That if I have Aspergers you don't have to treat me different.

M: Do people treat you different?
J: No.

M: If someone gave you a magic pill that would take away Aspergers would you want to take it?
J: No.

M: Why not?
J: Because I like being the way I am.

M: If someone gave you a magic pill that would change one thing about Aspergers would you take it and what would you want to change?
J: That I don't get angry so easily.

M: Is there anything else you would like to tell me?
J: No. Can I watch Ratatouille now?

I was interested to hear that Joseph feels so positive about Aspergers. I wonder if he'll always feel that way or that change some as he gets older and discovers some of the ways that he's different from neurotyipcal kids.

Eat, Drink and Be Quiet

I am worn out.

I am tired of the dinner routine we have at our house. Every night is exactly the same. It starts as soon as I start making dinner. Joseph will wander in the kitchen and ask what I'm making. If the answer is anything other than pizza he will start to whine immediately. He'll ask me to fix him something different, he'll demand to "ask daddy" to decide if he has to eat whatever I'm cooking, he'll ask how much of what I'm making he has to eat before he gets something else. When he doesn't get the answers he wants he collapses to the floor and cries. Then he'll pull himself together and recharge himself for battle.

When I set the table the whining starts again. Sometimes it's not so bad. Sometimes it doesn't start until I call him to the table. Most nights it starts as soon as he sees the first plate touch the table. It's always a rehash of the same complaints from earlier.

Once I've called Joseph to dinner and he sees whatever it is we're having the whining changes. It' becomes more high pitched and frantic. He starts rubbing his face (I think this is a sensory thing) and flopping around in his chair. He begs for something else. He cries. He insists that he isn't hungry. He yells at me for making such a gross dinner.*

This continues on as the rest of us start to eat. Thankfully Elle is a champion eater and will try pretty much anything we give her. Jesse and I trade off trying to get Joseph to take a bite and/or shut the hell up so that the rest of us can eat in peace. Joseph continues to whine and cry and yell. I smother my urge to (and this is not very nice) smack him on the back of the head. (He's lucky I don't believe is spanking is all I have to say about that.) Because I'm the grown up and I have to keep control of myself I speak calmly and say things like "This is just chicken. You like chicken. Instead of worrying that you don't like it please just take a bite." instead of screaming "Knock it off! Please, for once in your life just eat like a normal person and stop ruining dinner for everyone else!" like I want to. Joseph gets more and more upset until we either:

a) send him to the couch and do our best to ignore him. Once there he almost always cranks up the volume because now, on top of everything else we're no longer paying attention to him. This gets him sent to his room where he continues to crab and complain but at least it's somewhat muffled.

or

b) convince him to take a bite. Almost without fail the reaction is "Hey! I like this ....... but I'm full now." After one bite. One stinking bite.

Most dinners end with him having less than five bites of food and that only comes after much convincing on our part. An hour later we will claim to be suddenly hungry and when we bring out the leftovers of his dinner the whining routine starts all over again.

We've tried everything we can think of to break this cycle but nothing seems to work. We have to keep trying though. I would love nothing more than to let Joseph spend every dinner in his room playing so that the rest of us could eat in peace but that wouldn't be fair to him or to us. We need that family time together and on those rare occasions when Joseph cooperates we really do enjoy dinner time. Just as important (maybe even more) is that Joseph needs to eat. It sounds so simple but it's not. He's seven and half and he weighs 38 pounds. He's the smallest kid in his class. The other day someone asked him if he was four. He cannot be skipping meals because there's already nothing to him. I can't handle seeing him not eat because he's so tiny, I hate to think of him losing weight.

If there was one thing I could change about Joseph's manifestation of Aspergers it would be this damned food issue. I hate that eating is such an issue for him. I think it's partly a sensory issue. Each meal presents an overwhelming number of smell, sights, textures and tastes that can be difficult for Joseph to navigate through. I think it's also an issue of control. Joseph can be very rigid and he only wants to eat what he wants to eat and when he wants to eat it. This would mean vanilla ice cream and pepperoni pizza once or twice a day. Anything else is different from what he wants and therefor difficult for him to accept.

A year of food therapy hasn't made meal time easier for Joseph. Punishments, rewards, indifference, Jesse and I have tried it all. I don't know how to win this battle. I don't know how to make it not a battle. I feel like I'm at the end of my rope.

Tonight I'll make another dinner that Joseph won't eat. I'll calmly ask him to try just one bite. I'll do my best not to raise my voice when I tell him to go to his room. When dinner is done and put away I'll sit on the edge of Joseph's bed and rub his back and remind him (again) why it's important that he eat. He'll pick at his fingers and promise that the next dinner will go better. And I'll smile at him and promise myself that I'll find a way to make that come true because I'm the mom and that's my job.

* This shouldn't hurt my feelings but it does. I take pride in cooking for my family and it stings when my efforts are called "gross" or "yucky". It's very rare that a night goes by where there isn't some negative comment made about dinner. We can't seem to get across to him that this is not appropriate but that's the subject of a whole different post.

The fixation situation

We are currently in the middle of a video game lock-down at our house. It's been an interesting week.

Joseph, like many Aspies, has an issue with fixation. He will become so interested in one thing that that's all he wants to talk about or think about. Where Joseph is somewhat atypical is that he has shifted his fixations several times in his life. The first one I ever noticed was with the movie cases for our Disney movies. That was when he was very young, not yet three and he would spend hours looking at them and lining them up in rows. A more recent one was Scooby Doo (that was hell) and his current fixation is video games. It's become a bit of an issue.

You might be saying "Video games? So what? Don't all kids like video games?" Well, yes but a fixation is a lot more intense interest than what a neurotypical child might have. Joseph will play video games as much as we let him. When he's not playing them he's reading their instruction books or their strategy guides over and over. When you talk to him he wants to talk about video games even if you try to engage him in a conversation about something else. He likes to draw pictures of characters in his video games. When he takes a bath he uses his bath toys to act out scenes from his video games. It just never ends.

I don't feel like the video game fixation is 100% bad though. In fact, I see some positives to it. A lot of neurotypical kids like video games and being knowledgeable about games gives Joseph something to talk about with other kids. This is huge because social difficulties are common with Aspies. There are other benefits too. I think playing the Wii has improved his gross motor skills. I know it sounds crazy but if you've ever seen him play you would agree. He throws his whole body into whatever he plays. I think playing his DS has improved his fine motor skills and hand/eye coordination. The games he plays are always age appropriate so I don't feel like he's being exposed to anything negative just by playing them. I think a lot of the games he plays have improved his logical thinking skills and his ability to read. (Joseph is in first grade and reads at a fourth grade level so he's able to do even text heavy games on his own.)

So there's a lot of good with video games. Jesse and I noticed though that the fixation was becoming more and more intense. If Joseph asked to play his DS and I said no he would immediately collapse to the floor and cry. If we asked him to put his strategy guides aside and come eat dinner he would yell at us and then spend dinnertime whining about his book. Lots of times he wouldn't even eat because he was so anxious about wanting to get back to his book.

So we laid down the law. Time for a video game detox. No wii, no Playstation, no DS, no computer games. He can still read his instruction books or his strategy guides for short periods of time (because I can't bear to tell him he can't read something, it goes against my nature) and he can still draw video game pictures (because he's still delayed in the area of fine motor skills so I think any time spent with a pencil in his hand is a good thing) but that's it. We're encouraging him to spend time doing other things that he likes without whining and complaining about video games.

We've been playing a lot of board games this week and doing a lot of Legos. There's been a lot of dancing to the Lilo and Stitch soundtrack and lots of time playing with toy cars. Joseph invented a game where he and Elle throw stuffed animals at my exercise ball and yell "Boomba!". It's called Boomba.

We've also spent a lot of time saying things like "No, remember? You're not allowed to play DS this week." and "You've been talking about video games with Grandma for 45 minutes now. That's enough." I've explained several times that once he gets video games back again it's still going to be for very limited amounts of time.

I don't know if we can break this fixation. Actually, I probably can't. I can't rewire Joseph's brain. I'm just trying to get him over the height of this fixation without turning into a little blob with tv screens for eyes. The goal here isn't to make him stop liking video games so much, it's just to try to help him find a good balance between his fixation the rest of the world.

We'll see. Three days down and four to go.

(Thank you aj for this link. I had not seen that before.)

Blogging for autism awareness

This month I am going to be doing a few posts about what it's like to raise a child with Aspergers. I'm going to try to get Joseph to give me his take on what it's like to have Aspergers. I might even try to get other family members involved to get their perspective on it. I've often been suprised and frustrated by the large amount of misinformation there is out there surrounding autism so I want to do my part to try to let people know what austism (specificaly Aspergers) is really like (for us anyway). (Thanks to momolouge for getting this party started.)

If you're new to my blog I would like to take a minute to introduce you to my own little Aspie.

This is Joseph and he has Aspergers. And yes, he really does have it. It's not just that I'm too stupid to understand how special and brilliant he really is. That's not to say that he isn't special and brilliant because he is. He's also kind, funny, sweet, tempermental, moody, rigid, loving, thoughtful, stubborn, generous, self-centered and million other things that I could spend all day listing. If you would like to learn a little more about how Aspergers affects Joseph you can read some of my older posts here.

I hope that people reading this blog who are unfamiliar with Aspergers might learn something new. I hope people who are reading this who are familiar with Aspergers might be able to laugh and say "Oh yeah, I've been there." Raising a child with Aspergers has it's own unique challenges but it also has some interesting rewards. I hope you'll stick around and read my humble little blog posts on the subject.

This is the face of Aspergers. Beautiful, no?

No, actually you don't know it all

There's a blogger who I used to really enjoy reading who I recently had to take off my reader. She went from entertaining to annoying to irritating to massively pissing me off. If I were the kind of person to leave rude comments on people's blogs here's what I would have said to her:

Ok, fine. You want to ignore every expert who tells you that your child might have some form of high functioning autism? Good for you. It's your kid, you do what you think is best. But here's what you don't get to do. You don't get to proclaim that Aspergers is not real. You don't get to decide that everyone who says that their child has Aspergers and is trying to get them help is wrong for doing so. You don't get to imply (or outright state) that parents who say their children have a form of high functioning autism are too stupid or lazy or uninsighful to understand and appreciate their child's particular brand of brilliance. You don't get to say that therapy and interventions are wrong just because you've decided not to take advantage of them. You don't get to say "Wah! Stop talking about Albert Einstein having Aspergers!". Neurotypical children have nearly everyone else in the whole world to look up to as a role model. Let Aspies have one or two people that they can look at and say "That person is like me and they did a lot for the world. Maybe I can do that too." You don't get to simultaneously deny that something exists and become the god damned final authority on it. You want to ignore experts and research (and common sense) while you do what you think is right for your kid? Fine, go ahead and do that. But be aware that saying "My kid doesn't have Aspergers" should not equal "No kid has Aspergers and I'm going to turn into a raging asshole every time I ever hear the word." Seriously, get over yourself.

Yeah, that's what I would say if I was a raging hormonal bitch who was 33 weeks pregnant and dealing with a sinus infection. Good thing I'm not.