Perfectly Imperfect

“If I could design street signs, I would make them really fancy and when I put them on the posts, I would make them tilt-y.” Wolfie said this to me while eating dinner. He was dressed in his tuxedo pants, a white button down shirt, and his tie. He has been dressing like this pretty consistantly when we are home. He says he just likes to be fancy.

He has gotten back into the street sign making thing this summer. It seemed to be on hold for awhile, but we are in full swing around here again. My kitchen counters and pretty much every door jam has a sign fastened to it somehow. He has added a new addition. The clearance sign. Not to be confused with the “sale” sign. The clearance sign lets you know how much room there is above your head when going into a room or under a door frame. He has measured all the door frames and it seems that we have 6’7″ of clearance.

It is amazing to me what he notices. We were driving on the highway today and he kept making announcements. I would hear, “Attention. Low 9 – 0.” Then it was, “Attention. Low 7 – 8.” It took me awhile, but I figured out that he was announcing the clearance of all the bridges we were passing under. He makes the clicking noise too. You know the one that you would hear if a person was making an announcement over a loud speaker. I had to laugh to myself because it really did sound like he was using a microphone. I love his imagination.

I am fascinated with this new style of dress he has shown an interest in. It seems so unlikely that he would enjoy dressing in clothes that are so restrictive. He likes to lounge around in a variety of positions and he doesn’t seem to be aware of where his body is in space, so the choice to dress in clothing that inhibits movement seems strange. But then again…

I looked out the kitchen window this afternoon and was watching him play in the yard. It was drizzling slightly and he was running barefoot through the grass, tuxedo pants and all, holding a street sign he had just made. He was running to place the freshly made sign on a post of some kind and I was struck by how beautiful he is. My heart swelled with love for my quirky little man. He is the perfect mix of brilliant professor and Tom Sawyer. Fancy and tilt-y.

It was in that moment that it all made sense to me.

It’s A Journey, Not A Destination

“I wish I didn’t have a brother.” I have heard those words out of both my kids mouths countless times. This really isn’t an Asperger’s thing. I think it is pretty typical for siblings to feel angst-y about one another. I have two sisters, one of which I am pretty close in age to and we fought a lot. We fought about silly stuff. Her being in my space, her wanting to copy me, her sitting too close to me in the car or eating too loudly. The list could go on and on.

Adding Asperger’s to the equation makes it more challenging. Since Wolfie has Asperger’s and he is the oldest, in many ways there is some role reversal between him and five year old Hammy. Hammy has his own spectrum- like issues too. He gets excited about something and perseverates on it until he has it mastered. Last Christmas we got a Wii. We also got Guitar Hero. Hammy played it every chance he got and then some. It’s all he wanted to do. He played it until he could play expert level. I worried his arm would fall off or he would develop carpal tunnel or he would go cross eyed. None of those things happened. He just played it until he mastered it and hasn’t picked it up since. Literally, it has been months since the last time he played.

Going back even farther, when he was three, he became obsessed with Gwen Stefani. Yes, blonde bombshell Gwen. See, he loves music and I wanted to expose him to all kinds and so we listened to my ipod together a lot. There are pictures on the ipod and so began the love affair. He began wearing his shirts off the shoulder style and developed a lot of attitude. It sounds like it was inappropriate, but it wasn’t. It’s just what he was into.

Now Hammy is five. And for the first time in his walking, talking life he doesn’t have an obsession. I have noticed that it is hard for him to play on his own. He just flits from thing to thing like he is searching for something. He plays piano and he plays his guitar, but nothing holds his interest. He wants to play with Wolfie too and that almost always ends badly. I find myself wondering about Hammy. I wonder if the behavior I am seeing is a product of having an Asperger’s brother. Maybe he is emulating things he sees Wolfie do that he gets attention for. Or is he an Aspie too? How do you know for sure?

I struggle with how to parent him these days. I expect more from him. He thrives at school and displays none of the negative behaviors that we see at home. This makes it easy for me to settle on the idea that he doesn’t have Asperger’s, but is emulating behavior. But what about all the obsessive interests that fade away completely with almost no warning? What about the emotional blow ups at home? I feel so sad for him because it must be so hard to be Wolfie’s brother. I feel that, in many ways, he has to be the big brother.  That seems unfair to me.

Lately, he has had an extreme attachment to Eliot. He wants to spend time with him every chance he gets and becomes really sad and sometimes angry when he can’t. Eliot works a lot these days, and his office is in our basement, so you can imagine the constant trips to the basement that I try to prevent on a regular basis. Sadly, I think he has come to associate me with being the person who tries to prevent him from seeing Daddy.

“I wish you weren’t my Mom!” He screamed this in my face last night. I had taken the snow cone he was eating away because he had hit me.  “I wish I didn’t have a Mom at all. I just want Daddy.” He was flailing himself around on the floor, limbs kicking wildly. He stopped long enough to stare at me in the face while he yelled those words at me.

I can think of nothing that hurts more than to have your child say something like that. Rationally, I know that he doesn’t really mean what he is saying. He is hurt and sad. Confused and angry. But he is not hateful. I think it stung particularly bad because earlier in the day I had to put him on a break for talking back to me. I had told him he couldn’t have something he wanted and he started mouthing off and relentlessly negotiating. I had enough, and told him to take a ten minute break. He was very upset and about two minutes after I walked out of the room he announced that he’d pee’d on the floor.

He has the worlds smallest bladder so I naturally thought he’d wet his pants. I got a towel and went into the room to clean him and the floor. He was sitting on the couch and all the pillows were piled up on the floor. His pants were dry. He was calm.

The pee was under all the pillows on the floor. He had pee’d there intentionally. “I wanted to make you sad,” he said.

I know in my mind why he is lashing out at me in this way. I do. Life is hard for him right now and he is struggling with that. I am the constant in his life who provides love and encouragement. I also provide limits and set expectations and facilitate discipline when necessary. Eliot does these things too, but to a much lesser degree because he works. And when he spends time with the boys he isn’t also doing laundry and making grocery lists and whatever else. He is present in the moment and ready to just play.

All of those logical things are present in my mind. I know them. However, last night, all that logic was hard to find. I felt like the breath had been sucked out of me when he said he wished I wasn’t his mom. He was really angry, but like so many other times, he calmed down fairly quickly and asked me to read him stories. He actually continued to ask for Eliot, but ended up being happy with me.

I was glad we could end our day on a good note. After we read books he snuggled into me really close. He kissed my cheek and told me he was sorry that he’d said those awful things. He was worried that I’d not saved his snow cone. I told him that his snow cone was safe in the freezer and then he fell asleep.

It occurs to me that it doesn’t matter if Hammy is on the spectrum. He needs something he isn’t getting and it is my job to figure it out. I think it is a mixture of what all children need. Love, patience, kindness, independence, limits, and a lot of other stuff. It’s all about balance and that  isn’t something we will arrive to one day. It is something that we will strive toward constantly because what we all need at any given time isn’t constant. I remember that even on the most isolating of days, our family isn’t alone in this struggle for balance. That helps a lot.

Home

“Would you smile for me, Mama?” I can’t tell you how many times I have heard Wolfie say this to me after we have had a hard day. For someone who has Asperger’s, he sure knows how to read me.

Tonight was a little different. He asked the question as he was taking a shower, and yes, I was washing him in a frantic way because I could hear Hammy starting to rev up again in the next room, and so I flashed him a smile and started going about my business again. That wasn’t enough for him.

“No. A really big one this time,” he said.

Have you ever tried to smile for a picture you really don’t want to have taken, or smile through a stressful time just to make nice? It felt kind of like that, only much worse. I couldn’t do it and make it real.

God, I felt so guilty about that. I mean here he is asking me for a smile and some reassurance that I am not angry with him. Why was that so hard?

It had something to do with the sort of day we had. I think it also has something to do with not being able to keep anything from him. The kid hears everything. He could be in another room making street signs, which is one of his favorite past times, and still hear the conversation going on in the next room. It isn’t just that he hears it, he absorbs it and then wants to talk about it.

It’s also that he is so smart and he understands things that most kids his age don’t or wouldn’t care to. Like right now he is worried that we don’t have enough money. I keep telling him that yes, money is tight, but we have what we need and in a lot of ways more than what we need.

I hate that he worries about that. I feel sometimes that I have failed as a parent because he doesn’t have that innocence or naivety that would insulate him from the problems of the world. And then I wake up and remember that he has Asperger’s, and he never really had that innocence about the big stuff.

Isn’t that funny? He is so naive when it comes to the small stuff, like when it is appropriate or expected to talk or what the expected tone of voice to use with a friend is or how to play with someone without taking over completely. I call this the small stuff, but sometimes it feels huge and complicated. And it is to some degree, but no where near as hefty as the big stuff.

Fear of death, fear of dark clouds,thunder, money. These things he has no shortage of information on and will ask ten million questions about and never be satisfied with the answers.

The stuff I want him to pay attention to he largely ignores and the stuff I want to protect him from he gravitates toward. That, right there, is why I had a hard time smiling tonight. That and the several meltdowns that I tried desperately to shush while work was trying to be done below in Eliot’s office.

As I stood in the bathroom waiting for Wolfie to turn off the water I looked at myself in the mirror trying to make myself presentable for the outside world. My mind was going a million miles an hour.  I was thinking about the grocery list and how I wanted to get the boys in bed soon so that I could shop alone this evening, and how much longer would Eliot be in a meeting so I could actually leave.

“Are you happy with me, Mama?” That was like a knife to the heart. I opened the shower door.

“Of course I am happy with you,” I said to him and I felt myself smile all over. He was smiling at me and so clearly satisfied with my response. All I could think then and what I am thinking now is that I am so incredibly lucky. There are so many reasons that I am blessed with both of my children and my husband and my life in general.

I don’t like getting bogged down in the stressful stuff. I have always believed that things have a way of working out. They just do. I like to stay in the positive and, like most people, I lose my way sometimes. Finding my way back is such a great feeling. It’s better than great, it’s like home.

Right before his shower we ended our day right. We took the dog for a walk and had a great time. Hammy alternately ran, scooter-ed and sat in the stroller and Wolfie rode his bike. We were all in sync, doing the same dance. It is fantastic when that happens and I have learned to bask in those moments. Don’t let them just pass.

When I reminded him of how nice our walk was he said, “Yeah, we had that nice little bike ride and Chippy got a walk and there weren’t any problems.” He said this with a big smile and twitched his hands down by his sides. That little twitch he does is wonderful. It’s like his body doesn’t know what to do with all that good emotional energy and so it has to let some of it out. He was proud of himself, and I was overwrought with pride, love and happiness. Everything is as it should be.

Enough Already!

I always feel a twinge of guilt when I say that I am glad that this day is over. Saying that is so pessimistic. Was there really nothing that was worth it? When I sit back and look at my days, even the bad ones, there is always something I can point to and say, “There, that was worth it.” I guess that is why I am writing right now. I need to find the good in this day.

I’ve put the boys in bed early because I could feel myself boiling over with negativity and no good can come of that. We made it through the day and that is enough for me. So we didn’t have much fun. Oh well.

Times are tough around here these days. My husband is running his business out of our basement, which was hard enough when it was just him. Now, there are three additional people who work below all of the chaos that my little boys create all day. That adds a lot of stress to my days. I can’t just let someone have their fit because someone else might be on a conference call. So, I combat that by being gone a lot.

Today, I wanted to get out of the house and the boys just didn’t want to. It was like winter all over again. They were bored and whiny, yet they didn’t want to go anywhere. I go back and forth in my mind about just forcing an outing. Sometimes it works out in my favor and sometimes not so much.

We did venture out for a few errands today and that, now that I think about it, probably contributed directly in my choice not to do anything else. We were headed to the recycle center with a car load full of stuff. I was waiting for Wolfie to find his shoes so we could go and Hammy was crying because I wouldn’t let him bang two aluminum cans together to make noise. I was trying to compromise with Hammy when Wolfie appears in the doorway, shoe-less, carrying one of those toys where you press the button and the lights spin around and around.

He had attached a small glass juice cup with tape to the top of it, so that when he pressed the button the lights began spinning and would hit the cup and make a dinging noise. He was so pleased with himself. I have no idea how he got from finding shoes to making this creation. He demanded to bring it in the car. When Hammy began crying because he didn’t have his two aluminum cans, I was shocked to find myself offering to get him a light up spinney toy of his own to bang against a can.

You can imagine the noise coming from the back seat on the way to the recycle center. It was then that I knew today would be a long day.

The rest of our day was a regurgitation of the above scenario. Wolfie wanting to invent stuff using a slew of items that seemed too complicated, messy or just plain inappropriate to me and Hammy jumping on the “I wanted to do that too!” bandwagon. It was exhausting.

Our day ended when I was trying to do some gardening while the boys played in the yard. Things were fine for about three minutes and then Wolfie wanted to invent a new waterfall with the garden hose. We have had a lot of rain in the last few days and the ground is pretty saturated. Every time he turns on the hose to play I envision more mosquito colonies jumping for joy at the opportunity for a new home. So, I said no to the hose and the negotiating began.

Very LOUD negotiating by him. As he and I are trying to work it out, Hammy is running the other direction creating his own brand of chaos in being everywhere except where I want him to be. All is ask of him is that I be able to see him. Apparently that is too much to ask.

When I have days like this I am reminded of those old Calgon commercials. The one where the Mom is totally exasperated and her children are out of control and she puts her hands to her head and says very dramatically, “Calgon, take me away!” Suddenly, she is lounging in a bubble bath with the stress just melting away.

I don’t know about you, but when I am stressed and in this kind of situation all I want to do is yell,”Enough already!” And have that be enough. I imagine a world in which I can say that and my kids get that they have gone too far and they stop. I don’t even require the bubble bath.

Now comes the good part. I’ve put them in their beds and am taking some time for myself and wondering when the day is going to make some sense or at the very least give me something to smile about. I knew if I broke the cycle of negativity I would be able to see it. I went upstairs to kiss them goodnight and lay down with Hammy for a few minutes. Wolfie had been demanding that I come in to talk to him and I was saying, “Be there in a minute.” I don’t think I’ve ever enjoyed that time period of parenting when you can say that and come back in an hour. Wolfie has been telling time since age two and a half.

Anyway, I went up to tuck them in and Wolfie had made a chart of his behavior for the day. The top half of the page said “Things I did today that were bad” and the bottom half said “Things I did today that were good.” Unbelievable. Right there, he made me smile. We read them together and when we were finished he asked me, “Are you feeling better about our day now?”

“Yes.” I said.

It is this kind of thing that makes parenting all worth it for me. It is when my kids show me that side of them that is compassionate and wise beyond their years that I am so grateful that they are mine to cherish.

Happy Birthday, America!

July 4th is a day to love. We are celebrating the birth of our great country and the great leaders who fought for the independence and freedom that we enjoy today. Of course, we use it as an excuse to eat copious amounts of beef, potato chips, corn on the cob, and an array of sugary desserts. Oh, and very cold beer. Really, what’s not to love?

It is a day to celebrate family too. At least that’s what I think. Part of what built this country is the strength of family. Families who stuck together and suppported one another through the hardest of times. Communities that became an extension of the immediate family, who provided whatever another person might need, from a cup of sugar, to dinners for weeks on end because someone lost a job or a loved one.

I get sentimental about this community concept for some reason on July 4th. I remember being a child and walking with my family to see the fireworks. It was so much fun! We would go to the local park and get snow cones and eat popcorn and oooh and ahh all throughout the fireworks display. I saw friends there and we would run around and play while our parents talked after the show. There weren’t hoards of people. It was just enough to feel like a crowd and be exciting.

We live in the same community that I grew up in. There is still a local fireworks display and it is wonderful. A little too crowded for my taste and it is hard for the kids to have a good time. It’s loud, it’s dark, and it’s crowded.

Last year, as we were leaving the fireworks I was telling myself that we didn’t really need to see fireworks. Eliot and I were on edge to begin with because of parking, then we tried to meet some friends, which was close to impossible because it was so dark and crowded. We finally sat down and I was so proud because I had remembered the little glow-y sticks that all the kids like to play with these days. I got them out, snapped them in half and watched the kids faces light up as the stick transformed into a light wand that they could bend and spin.

I watched the first three minutes of the display when Wolfie announced that his mouth felt funny. I looked at him and his mouth was glowing. Bright neon green. He and I began to panic. We spent pretty much the rest of the fireworks rinsing his mouth out with water and trying frantically to find the packaging to make sure the liquid in his mouth was non-toxic. Thankfully, it was.

That was last year.

Last night, we decided to walk to the local high school. I had heard that the fireworks were visible from the field there, but had always been reluctant to try it out. We packed up the stroller with popcorn, watermelon, a few beers, and some spinny light toys. No glow sticks this year. We made it up to the school with plenty of time to find the perfect spot. There were a lot of people watching around the baseball field, kind of through the fence. I explained to Wolfie that we were looking for the “just right” spot. He kept pushing for us to go through the crowd to a place that he had in mind. I told him that sometimes the decisions were up to the adults and that this was one of those times. I still can’t believe saying that actually worked.

He and I ran ahead of the group to check out the scene around the soccer field. We decided it was perfect. There was wide open sky, a breeze, and probably twenty families scattered around. I began to silently wave to the rest of our group when Wolfie yelled out in his loudest voice, “WE FOUND A SPOT!” This echoed off the gym and surrounding buildings. I couldn’t believe how loud it was. He was up on his toes and his body was rigid, except for his hands which were moving back and forth down at his sides. His head was lifted up to the sky and that muppet mouth of his was open as wide as it could be as he shouted. He does this when he is excited. It’s as if no one else exists. It’s just him and us and why shouldn’t he yell?

I just started laughing as I looked at the shock on the man’s face who was standing next to me. I said, “Buddy, that was totally un-neccessary.” The man said, “Wow. You might have a singer on your hands.” I chuckled and said “Yeah or an announcer. He doesn’t need a microphone.”

We spread open our tarp and popped the tops of our beers just in time for the fireworks. Hammy found the mud and sand next to the blanket and played with that the whole time. Wolfie yelled “Happy Birthday, America!” periodically throughout the display. There were no arguments, no parking hassles, and no glowing mouths.

I sat there enjoying the fact that Wolfie knows so much about Independence Day. His interest in American Presidents has sparked an interest in me to learn more about our country and it’s history. I felt no pressure to ask either of my kids to conform to someone else’s idea of  normal and I enjoyed our normal. It was fun laughing with my Mom about how neither of my kids really seemed to care about the fireworks, but they were having a great time and that’s all that mattered.

As we walked home, a gentle rain began to fall and I thought how nice it is when everything works.

A New Game

“I think this is helping, Mama.” This is what Wolfie said to me 20 minutes into our morning after creating and beginning our new game for better behavior. I was thinking to myself very optimistically that this may actually work, but there was that voice in the back of my head saying “Just wait, it will get old like everything else.”

I really hate that voice. That cynical part of myself always shows itself when times have been tough and I am tempted to feel sorry for myself. This is why I am so glad that I stumbled upon this new idea.

Yesterday we had an awful day and after coming up empty handed from the many books on the shelf and the archives in my head, I decided to look for guidance on-line. This is sometimes overwhelming, but I found what I was looking for the first place I looked.

I am new to Twitter, but in just a short while I have connected with some like minded people who have great ideas about raising children on the spectrum. Many of these people also have blogs and some of them home school their children. I am awestruck by this. There is so much organization, thought, and patience that goes into planning a day at home with children on the spectrum and out of that some great ideas are born. One website that I keep going back to again and again is Spectrum Homeschool and the connecting blog, Spectrum Mother. Both of these sites are filled with great information and ideas that are valuable and specific.

The idea is simple. Create a ladder. We made ours out of 2 dowels and 12 popsicle sticks. We wrote on the popsicle sticks and then hot glued them to the dowels to form a ladder. When we were finished the ladder reads from top to bottom:

Everyone feels happy

Special time with Mom or Dad

Pick a treat

Special Activity

Great Job!

Start

Warning

Break 10 min.

Break 15 min.

Lose a Privilege

Everyone feels sad

The kids each drew a small picture that they use as their “guy”  to move up and down the ladder. We put the “guy” in place using Velcro circles at each rung of the ladder and began the day on the “start” in the middle of the ladder.

There are so many things to like about this approach. First of all the visual is great. You could do this on paper, but my kids really enjoyed making the ladders and they are very portable. Also, it is hands on for them and really feels like a game. It involves choices and rewards and it is so clear for them to see where they want to be on the ladder. I also like that it is ongoing. There is no end really because once you reach the top or the bottom, you go back to start and begin all over again. 

Wolfie and I put together the first ladder while Hammy watched a show on the television. When Wolfie started telling Hammy about the ladder and how he would “send him on a break if he made a bad choice”, it became clear that some ground rules were needed. But once we had those in place the morning went better than any morning we have had in awhile.

My husband and I have talked a lot about providing opportunities for the boys to save face when they have made a mistake or had a bout of bad or unexpected behavior. This approach naturally provides a visual for that. There is no reason to be stuck on one rung of the ladder, unless you choose to do so. We have been talking so much at our house about how behavior makes choices for us when we aren’t really paying attention. This illustrates that in such a simple way.

We had a great day today. I have no doubt that part of it, in addition to this new approach, was because I wasn’t feeling so on edge. I have been trying to look at my part in their behavior. It is always easy to see the good parts in my children and relate that back to myself. It is much harder with the difficult stuff. The not so pleasant stuff. No one wants to own that.

Novelty helps too. I know that I will have to change it up every now and then or maybe more often than that, but it is nice to know that this got us through one day without any meltdowns and very little difficulty. I am grateful for this beautiful summer day where we got along with one another. We laughed, we played and I even got five loads of laundry done!

Never in my life have I seen the value in connecting with others more than now. Sharing information is so important. It is the cure for the isolation and desperation that I know is so common when parenting a child on the spectrum. It is the reason for so many great days we have had and will contribute to many more great ones in our future.