I Scream for Ice Cream

I know that Asperger’s sometimes looks like your child is spoiled or over indulged, but that doesn’t mean they are. I know that kids with Asperger’s tend to fall apart sometimes and that it really is no ones fault. I know that I am a good Mom and not a complete failure at raising children. I know all these things. Some days it is hard to convince myself though.

I have a shelf full of books offering advice and opinion about my Asperger’s, out-of-sync, sensory sensitive, over-stimulated, sometimes just typical little boys. What good are they really? I mean, I’ve read them like they were the bible, and sure, there are some nuggets that have been valuable and that work for us occasionally. But when push comes to shove and I need something to work or I need a strategy right NOW, I’m getting nothing from these books. What I need is a comrade. Someone who gets it. Someone who can share a specific story from their life that I can relate to, and tell me how they handled it.

Here is how I handled the fall out from today. Mint chocolate chip ice cream and Scooby Doo. The ice cream was for me and the Scooby Doo for them. It is working beautifully. It is the reason I have time to write. And I am so thankful for that too.

See, earlier today we went with my sisters to the Zoo. I never know what to expect from an outing like this and today it was lots of complaining, whining, and no energy for walking. That is, of course, until I decided it was time to go home. Then it was complaints about that and plenty of energy for arguing, hitting and general mayhem on the way home.

I sent both kids to their rooms and cried while listening to them laugh hysterically and say the word “vomit” to each other over and over again. I didn’t mean to cry it just sort of happened. I was sitting on the floor in front of my bookshelf, talking to Eliot and I felt so desperate. I looked up to the shelf searching for something that would give me the answer to my situation. It occurred to me as I looked from cover to cover that the answer was no where in these books. It never was.

Poor Eliot, after hearing me say that the books were meaningless, tried to have a philosophical discussion about how the books are just one tool and the answer lies within me. I was in no shape to have that discussion. This was not obvious to him because he also has Asperger’s and it is easy for him to shift from his emotional mind to his logical mind. I don’t think he understands that sometimes it feels good to sink into that emotional place. To not fight the emotional with the logical.

Sometimes I just have to give in to the, this is just really, really hard and what the hell did I do to, blah, blah, blah. Today is one of those days.

I don’t stay there long. But it is just long enough to know that I don’t want to be there. I think it is hard to feel strong  all the time without sometimes feeling weak. If you are never weak, how do you know you are really holding it all together?

It takes a lot more than just one bad trip to the Zoo for me to feel as desperate as I was feeling today. It didn’t help that a few days ago my children unleashed the severity of their behavior onto my unsuspecting in-laws, which made it so we had to pick them up from the sleepover they were having at 10:30 at night. It also doesn’t help that Hammy hasn’t actually fallen asleep before 11:00 once in that last week. This isn’t because he hasn’t been in bed at 8:30. He just won’t go to sleep.

When we have weeks like this, it is so hard not to look at the big picture. I feel compelled to look ahead to be prepared for or to predict what might happen in another situation or too look back to see how we might have handled something differently. This leaves me feeling somewhat desperate and very short on time. I am desperate to control a situation that is never going to change. It is uncontrollable. And it has not much to do with me. This is the hardest part of parenting my children for me. I cannot predict their behavior nor can I control it. I can only control how I handle it myself.

So now we are back to modeling again. It is so hard to model the behavior I want from them when I want to scream at them to stop whatever behavior they are engaging in. So much harder than it sounds. That it is the hard thing to do means it is most likely the right thing to do.

 After all, nothing in life comes easy, right?

Never Ending Love

“Mama, have I told you today how much I love you?” This is what Wolfie said to me a few times yesterday. God, I love that kid. I love how he is unabashed in his affection for the people he loves. There is no embarrassment or hesitation on his part. If he is feeling the love, he is going to tell you about it.

There are some that would suggest that this expression of emotion is scripted. That he says these words because something about his situation triggers a memory of a time when someone said this to him. That is certainly part of it. Isn’t that how we all learn to express ourselves? By watching and participating in social situations and filing away the words, the feelings, and the context we begin to understand how to operate socially. Most of us don’t remember learning this consciously.

To suggest that because Wolfie’s social filter is delayed or even absent sometimes means that he is unfeeling or without empathy is just wrong. I should clarify that no one has suggested this about Wolfie in particular, but I have read article after article where it is suggested about others with Asperger’s. He gets his signals crossed a lot and it would be very easy to draw the conclusion that he is unfeeling or uncaring, especially when someone is hurt and he is responsible in some way.

When I was in seventh grade my best friend’s Dad died. It was horribly sad. He had been sick, but I only know that as an adult. At the time it seemed that it happened out of the blue. No one close to me had ever died and I felt so unsafe and terrified for my friend and for myself. It was a feeling so powerful that I didn’t want to feel it. I went to the funeral and, for some reason, I was sitting with my girlfriends at school and not my family. I don’t remember why. Here is what I remember though. The processional started and I saw the coffin and my friend and for some reason I started laughing. Not out loud, because I was trying to stifle it, but I was shaking with laughter. It was like everything in me was so confused and I no longer had control of myself. My brain was telling me to stop, but I just couldn’t. Eventually, I got the laughter under control, but I never shed a tear.

Looking back, I know I was just overwhelmed. It wasn’t that I didn’t have empathy. I did. So much. I just couldn’t control myself.

I think of  this memory of myself a lot when Wolfie has an unexpected response to something. I am becoming convinced that his Asperger’s causes something similar to my experience in him.

I’ve come to believe that he doesn’t “sort of”  feel anything. When he feels something he feels it with gusto. His cup runneth over with love, frustration, sadness, anger, silliness, you name it. These emotional feelings are present with such force, I think, that he is in a  hurry to respond to them. To give them a voice or a way out. So, his lack of impulse control sometimes leads to a disconnect and we have emotions being expressed, yes, but they aren’t he ones we expect.

When emotions are flying all over the place, and it isn’t an expression of love, it is hard in the moment to remember all of this. I want to give him the benefit of the doubt so much and sometimes I forget to. He is so intelligent and is capable of expressing himself sometimes in such an articulate way that my mind forgets about this disconnect.

I am confident that he will learn to moderate his emotional responses. He already has. There is maturity and growth all the time. I feel blessed that, so far, Wolfie has been encouraged by the people around him to be the best little person he can be. And we do that by encouraging and cultivating those  things that he does best.

“I love you all the way to the moon, the stars, and all the planets and back. As many times as you can count.” We say this to each other every night. It started with the book “Guess How Much I Love You” and we have expanded it over the years. It was kind of a game and it was scripted for sure. He was so little when we started this, he really didn’t know what he was saying.

Now, when he looks into my eyes and says this I know he feels the love he is expressing. That is something that you cannot script. It just is. And I am forever grateful for that.

It’s A Hard Knock Life

There is something so devilishly sweet about Hammy. He is a round-headed, brown eyed, toe walkin’ pixie. Sometimes I look at him and I am consumed with overwhelming love and adoration. He has me, and everyone who knows him, wrapped around his finger.

This is why I have had to get firm. A friend and I were laughing the other day about our two youngest boys who are in need of some heavy discipline and she dubbed this summer as “the summer of hard knocks.” I couldn’t have said it better myself.

As I mentioned Hammy is very sweet. He is also very naughty.  I worried when he was a baby that he would feel over shadowed by Wolfie in all his glory, but I don’t worry so much about that anymore. He holds his own just fine and then some.

Eliot was leaving for the hardware store to pick up some oil for the chainsaw because we have three enormous limbs that have fallen in the backyard that need cutting up. Of course, it is the hottest day ever and Father’s Day so he isn’t excited about doing this…at all. He’s being a good sport though and offered to take Hammy with him. Both the kids love going to Ace because they have a popcorn machine that you can get a bag of popcorn from to munch on while you shop. What kid wouldn’t love this.

So, Eliot told Hammy to get his shoes on so they could go. Hammy’s response was some sort of shriek followed by a slew of potty words, like poop and butt, directed at his brother who, right on cue began laughing wildly which only encouraged it more. Yeah, we are in that phase.

Eliot announced that he would be leaving without him if he didn’t get down to the business of putting his shoes on. “I want you to do it for me”, he said. “I don’t want to get my fingers all dirty.” This is so typical Hammy. His fingers were already filthy from gardening and playing catch outside. Eliot pointed this out and told him again to put his shoes on.

Hammy, in an effort to be cute and at the same time show his frustration began kicking at and hitting Eliot. I know that he wasn’t intending to be aggressive with his actions because he was smiling while he was doing this, but still. It has to stop. He has been doing this a lot and it isn’t just with us. It’s like he gets around adult men and he thinks that he has to hit and kick to get attention or maybe he feels that he is “play” wrestling. Who knows.

See, what’s strange is that he does this type of hitting and kicking and then he also does the “I am so mad at you, I’m not getting my way” kind too. Sometimes it is hard to decipher the two and often it starts out as silly, play hitting and morphs into the other kind. This happens a lot when he plays with Wolfie. I’ve decided to discipline for both kinds. Not that I haven’t been already, but I am getting serious about it. Even if it inconveniences our day. These are the hardest times to follow through and I had some gardening I really wanted to finish.

After the hitting and not putting shoes on incident he was told that he wasn’t going to Ace anymore and he needed to go to his room for being violent. This made him very angry. I carried him up to his room, kicking and screaming, and Eliot left. When he gets like this there is no talking to him. I put him down on the floor and walked out of the room, closing the door behind me. He hates when I close the door and I agreed to open it if he stayed put until I said it was time to come out.

Wolfie and I were chatting downstairs while Hammy was screaming at me from upstairs to come back. It is at these times I am most thankful for air conditioning and closed windows. What would the neighbors think to hear my little five year old yelling that he hates me and that I am the meanest Mommy ever at the top of his lungs?

He finally calmed down. He stopped screaming and was ready to melt into me and cry. He was so sad that he missed his chance to go to Ace and he wanted another chance to do the right thing. He said he needed to go to Ace. There was something there that he really needed. Of course, he couldn’t tell me what it was that he needed. He said he could see it in his mind, but he couldn’t describe it or draw it. I suggested that he just wanted to look around the store. “No, you don’t understand. There is something there that I need.”

He said this about his behavior. “My mind tells me to show my frustration and I just listen. I know I didn’t make the right choice, but my mind just tells me to do it. I don’t know how to not do what my mind tells me to do.” He says this to me with a flurry of hand gestures while circling around on his tip toes. He told me that he doesn’t like it when I yell and am mad at him. I told him I wasn’t mad, just disappointed. And that I was sad that he made the choice he made. He mentioned the yelling again. I wasn’t yelling, I was being very firm and I explained the difference.

“I don’t like the firm Mommy.” I told him that he gets the firm Mommy when he makes choices that hurt others.

I love how he articulates his thoughts and feelings. Sometimes his wisdom floors me. He does have trouble with his impulses, obviously. But for him to be able to say what is happening in his mind is pretty great. I have those internal battles with myself when I am angry. There are things that I want to say or do that I know are the wrong things and when that feeling is really profound I actually have to think to myself, don’t do that. I don’t remember being taught to listen to one voice or another, I just knew.

These social expectations are hard to teach. I am not convinced entirely that Hammy has trouble with the expectations so much as he has trouble reconciling what is expected of him and the behavior that he sees Wolfie engage in fairly regularly. This would explain why he doesn’t have these troubles at school. I am sure that it is hard to be the brother of a kid with Asperger’s. And I am sure it is especially hard to be the younger one.

For this, and many other reasons, I hate to be firm Mommy. It hurts. But I know it’s the right thing to do.

Who Says That?

When Wolfie was about two and a half he repeated everything he heard. This is pretty typical for most kids that age, but for Wolfie it was a little different. By age three he was still doing this. He said his own things too, but he repeated what he heard often. So often that his preschool became concerned that he was only repeating what he heard and not generating his own ideas. Echolalia. This concern is what started us down the path to his Asperger’s diagnosis.

Long before the word echolalia had been mentioned to me, I noticed that he would say things with the same inflection that I did in an appropriate situation. One of these times we happened to record on video. He had just turned three and was hanging out with Eliot, who is the sole reason why we have any video footage of anything. I am so glad that Eliot made these recordings because it gives us the opportunity to go back in time and see what others were seeing.

Eliot was actually filming Hammy, who was five or six months old, when Wolfie came into the room and said, “Do you need a paper towel?” This was his way of asking for one.

After getting his paper towel he went running out of the room. Eliot follows behind and sees that Wolfie is cleaning up some spilled milk.

Eliot: “Oh, buddy, did you spill your milk?”

Wolfie: “Oh, did you spill it? Did you spill your milk?”

Eliot: ” We can clean it up.”

Wolfie: “We can clean it up.”

This was so normal for us.

Occasionally, Wolfie would say something totally out of the blue that I knew I had never said. I started asking him “Who says that?” and he would always tell me where he heard it. We had a lot of fun with this.

One day we got in the car to go somewhere and as we approached the end of our street I hear Wolfie say very distinctly, “Shit God Damn It.” He said it as if it were one word and kept saying it over and over. I stifled my laughter as I turned to him and asked, “Who says that?” And with no hesitation he replied, “Grandpa.”

Of course, Grandpa felt so bad. We saw them later and told them what happened and we all had a good laugh, but what was so interesting is that Grandpa had said exactly those words in the same spot on our street as Wolfie said them. He had forgotten about his soda on the dashboard and started driving when it spilled.

Now that Wolfie is older I don’t ask him “Who says that” very often and today I learned that I should.

He has been going to this play group therapy for about six months now. He has a love/hate relationship with group. He loves the other kids in group and he hates how hard it is for him. Specifically how hard Ms. T  is on him. She is trying to teach these spectrum kids how to be social thinkers. It’s a big job and no doubt it requires some toughness on her part. Or does it?

Wolfie mimics everything. This is how he learns how to behave. This is how we have taught him almost every social thing he knows. We model it.

He has always had meltdowns or temper tantrums. These come from built up frustrations and over stimulation. We have been having a whole lot of sassiness, back talk, and just general rudeness coming from him. These are learned behaviors. I could talk for days about all the places where both of my children pick up on bad behaviors. Never did I think one of these places would be group and the one teaching the behavior would be the therapist.

He has been snapping in people’s  faces when they start talking and he doesn’t want them to. And he cuts people off by saying really loudly “Ah!” He only does these things when someone is saying something he doesn’t want to hear or if he is under the impression that you have just interrupted him.

So, today was a group day and he announced that he didn’t want to go. Actually he refused to go and said he wants to quit. I told him that we could discuss it when he felt that he could tell me what was bothering him. Right away he said he didn’t like Ms. T. This is nothing new. I asked him why and he said she is hard on him.

I asked him what she does that makes it hard for him.

Wolfie: “Well, she does this.” He snaps in my face.

What??

Me: “Ms. T does that to you? When does she do that?”

Wolfie: “When I am not paying attention or not listening.”

At this point I am just floored. I mean, we have been trying to figure out for months where this behavior came from and how to solve it. It has been an absolute nightmare.

 If there is one thing I have learned from raising an Asperger’s kid it is that our words and our actions mean everything. Wolfie picks up on everything and doesn’t have a well developed filter that can tell him which things to keep. So he keeps it all.

I really believe that Ms. T thinks that those tactics are effective for getting the kids attention and for that purpose I am sure they are. Wolfie is afraid of crossing her because he doesn’t like how stern she is. But he is not afraid to mimic her in situations that seem similar to him. The obvious problem with her approach is illustrated by the story above.

As a parent, I struggle with the pressure to participate in therapies designed to help Wolfie integrate better.  They are expensive and no one really knows how much of it helps. There really isn’t a way to measure it. Did I mention they are expensive? I have put my faith and my little boy in the hands of many therapists over the years and have never liked the feeling I get when I let him go behind a closed door without me. I hate that this experience has given that feeling a stronger edge and I am sad to think that the one thing I am certain he is getting out of group is something that is distasteful and disrespectful. Ugh.

Thunder, Lightening, and Funnel Clouds

It is thundering again.

Wolfie is sitting on the couch watching an episode of Scooby with his ears covered and with each thunder yelling “Mama!” It’s like a reflex for him. Kids with Asperger’s develop patterns. Some are OCD about their things and that is where the pattern lies. Some want the schedule or routine the same. And in cases like Wolfie the pattern starts with any situation that leaves an imprint on him. Good or bad, that pattern that has just been imprinted is gonna be around for awhile.

It took me a long time to figure this out about him. When he was in preschool he had a rough afternoon getting ready one day. I think he wasn’t feeling well. Something set him in motion for a bad day. I mean really bad. They  had to clear the room because he was having a meltdown and no one could figure out what set him off. I’m still not sure.

What happened though, is that he started refusing to go to school. It was one of the hardest times in my life because I didn’t get it. I had no idea why he was acting this way. I was desperate to change it, but I didn’t know how.

We had a meeting with his preschool teacher and the inclusion facilitator. Two of the most wonderful women on the planet. These are women who were born to do the jobs that they do. They are gentle, kind, full of information and most importantly, I think, eager to learn from the children that they work with and their parents. Great listeners.

Anyway, after I talked about how desperate I felt and described Wolfie’s behavior, Alison, the inclusion facilitator said to me “Sounds like he’s developed a pattern. We have to help him make a new one.”

Those words were like gold to me. It was so empowering to think that I could help him create a new pattern. The things that happened next were so simple and so effective. I wrote a social story for him about what we do to get ready for school and how we feel when we do it. We read it every day and every night. Within a few days, he was getting in the car without freaking out and he felt safe again. It was incredible to watch and to be a part of.

Since then, we have written many other social stories. Some we even wrote together and I honestly think having them around helped me as much as it helped him. It was like getting the instructions to perform a dance. We knew some of the moves naturally, but we needed help with some others.

It is no coincidence that Wolfie is intrigued by and also afraid of storms. They lack predictability and that makes him uncomfortable, but I think he identifies with that. I think it is a great analogy for his behavior.

Just like the clocks he became fascinated with as a little guy, we will learn as much as we can about storms. We will learn about clouds and what they tell us with how they look and which direction they come from. We will learn about thunder and lightening. And we will eventually watch a funnel cloud form on video. This is something we can’t even discuss right now. But we will get there and when we do we will have what we need to feel safe.

There is nothing more powerful than knowledge.

The Hard Lessons

You know how you get where you are going only to realize that you forgot something you really need? It sucks doesn’t it? I mean, sometimes it is no big deal. You turn around, you get what you need and no one gets hurt.

So often, though, it goes something like this. You get where you are going, realize you forgot something, turn around to get it while listening to what sounds like the world coming to an end in the backseat, get home, retrieve what you need and then watch, completely dumbfounded, as your children fall apart at the seams.

Today had been challenging enough. Wolfie went to bed late last night and woke up at 5:30 am. He had jelly legs, which is what I call the way he kind of goes limp and presses into me,  and a demanding attitude by 7:00 am which was my first clue that the day would challenge both of us. He woke up so early in part because today was the day he would be working with Grandad at his business, Childgarden.

He takes this job very seriously as we all found out yesterday when Grandad had to change the schedule for Wolfie’s time at the office due to a meeting. His normal time to work is Tuesday and Thursday mornings. NOT Fridays. There weren’t any meltdowns, just a stern reminder to Grandad, given by Wolfie,  that the schedule is very important.

By 7:00 this morning he was dressed in a nice shirt with a tie, blue jeans, his dress shoes and his favorite 4 gel pens in his shirt pocket. Ready for the day. Or the morning anyway.

The afternoon has been a completely different story. We have been experiencing a lot of thunderstorms lately and he has come to associate a cloudy sky with the impending doom of a storm. It is overcast. It’s not particularly hot. We are headed to the pool anyway. I knew we wouldn’t survive another day at home and I just wanted to get out for awhile.

Putting our suits and sunscreen on was  filled with silliness that could have turned into straight up violence between both boys. And lots and lots of potty talk.

There are few things that I dislike more than potty talk. The problem is, I have children who don’t give two hoots what I say when they are in the throes of silliness and on the verge of complete insanity. Somehow we managed to get all the way to the pool without anyone getting seriously injured.

When I realized that I only had one water wing for Hammy I had a fleeting thought. “Maybe we don’t really need the water wings.” Hindsight is always 20/20. We should have gone in and dealt with not having the water wing. He needs to learn eventually, right? We’d most likely be having a blast on the lazy river and for once in many days there is NO thunder. I wish I would have listened to that voice.

We live only three minutes from the pool, so it didn’t take long for me to get into the garage and get the water wing that was left behind. I turned around to get back in the car and see that Wolfie is out of the car, slamming the door, and announcing as he is walking into the house that he is not going to the pool today.

Great!

So I, in a desperate attempt to regain control, offer the choice of either going to the pool or spending the rest of the afternoon in his bedroom. I really wanted him to choose the pool so I repeated this choice many times. He made things worse for himself by closing the door and locking me out of the house. Yep. It got that bad.

When things like this happen I wish I could hit the rewind button. All afternoon I have been asking myself,” Why didn’t we just stay at the pool?”

I remembered that one of the other doors was not locked and I got into the house within a minute. The look on his face was one of pure astonishment. It was like I had performed some incredible magic trick. He still doesn’t know how I got in the house. Who knows what he planned on doing with me locked out of the house. Probably not much.

Teaching the hard lessons of life is hard on everyone in our house. Growing up, I always had the sense that life was hard for just me, the child.  My parents just didn’t understand, I thought. Of course, now that I am a parent I realize how hard it must have been for them. My kids are very different from me, but in many ways I can identify with their frustrations. I see a little bit of me in everything they do.

“I want to hear people say that I do the RIGHT thing!” He yelled this in my face. “I am always doing the wrong thing.”

This frustration that he feels is isolating for him. The lesson that we make choices with our actions and our behavior is hard to teach and so hard for him to understand. I told him about all the things that he does right. There are so many of those things. So many ways that he makes people smile. So many ways that he has made me a better person.

Always at the end of a hard time he starts sharing his feelings. He was not happy about going to the pool because it doesn’t have an indoor option for rainy days and he doesn’t want to hear thunder. Why didn’t we join a pool with that choice, he wants to know. “There are too many things going on at the pool and I might not be able to handle it.”

That’s it. That’s the reason we didn’t go to the pool today. I just didn’t know it until he said that.

Last But Not Least

This morning H says, “You cook really good pancakes, Mama. You are like a chef in a resternot.” Resternot. I love when he says resternot. He has been saying it this way since he first tried to say restaurant and I can’t bring myself  to correct him. My other favorite is “soupcase”. I get the pleasure of hearing him say this every time he packs for a sleepover at the grandparents house. Every time he says soupcase I get the same visual. H with a chef hat on, barefoot (because that is always his preference) in his bedroom pouring a homemade soup concoction of his very own into his suitcase with a giant ladle. This is sketched in my mind Maurice Sendak style.

These little H-isms won’t be around for much longer. He is five and growing up fast. These two are the last of many mispronunciations. All of them were super cute and for some reason these have been the ones that I just don’t want to correct. W tries and tries to correct him when he says one of these words while he is within earshot. This is always followed up by a shush from me and somehow H just manages to ignore all of this and just continue right on saying things  the way he thinks them in his mind.

I always thought I would have more than two children. I don’t know why. Maybe because for awhile, as a child, I wished for more siblings. I wanted a brother and was jealous of my girlfriends who had brothers. Maybe because I have a huge extended family that always felt larger than life to me growing up. In my mind it was family = lots of people. Of course having a baby changed the way I thought about everything. I loved every minute of being pregnant with W. I felt so good and I was so incredibly happy. Honestly, it was the best time of my life. The miracle of growing a baby is unbelievable.

When he was born I was so in love. It was like time stopped and nothing else in the world mattered. We had made this perfect little being and we were both so mesmerised by his beauty and his ability to capture our hearts so completely. I vowed to do it again and again.

I was so thrilled when, 20 months later, we found out that H was on the way. Pregnancy was a little different this time around, but even through the heartburn I felt great and was amazed at what my body was doing. W was an active toddler and kept me busy, but evenings were time for me and H. I would lay in bed each night feeling him roll around and kick and dream about what he would be like. How would our lives change? Where would I find time for both? Could I possibly love anyone as much as I love W?

Yes. Yes I can. Having H was amazing. Giving birth to him was an experience that I would do again for sure. Everything went the way I wanted it to. He was born less than two hours of our arrival to the hospital. There was no time to hook me up to any of the machines. He was ready and he wanted out.

This might sound hokey or too new age-y, but when I look at the way each of them were born, much about their personalities is explained. W was 10 days late and I was induced. For some reason the pitocin didn’t work so our doctor broke my water and 5 hours later he was born. He weighed in at an enormous 9 lbs. 13 oz. He was born on a blue moon, alert all the time and a ravenous eater. H was born a week early. I didn’t realize that I was in labor because the contractions were never consistent. My water didn’t break until I started pushing and he came out a delicate 7 lbs. 4 oz. He was very alert and mostly played when he was supposed to be eating.

W doesn’t like to be pushed into things. He takes his time and looks at everything from many different angles before settling on anything. And even when he is settled, things are always subject to change. He has a hard time figuring out what he is supposed to be doing according to the people around him. He is perfectly satisfied to manage his own time using his own guidelines and execution. He is always hungry for food, knowledge and attention. He is bigger than most of his peers and his ideas are even bigger. He walks through life with a heavy foot and a huge smile and his presence is never missed. He has an abundance of love for people regardless of age or appearance. Convention means very little to him.

H is a mover and a shaker. He has big ideas and is great at getting others to do the execution for him. We’ll be hanging out and he’s telling me about this great idea he has and the next thing I know he is in the next room doing something else and I am working on his idea. Unbelievable. He is sensitive, kind and a deep thinker, full of insights that seem too advanced for his young age. He rarely wants to sit down to eat and when he does he mostly talks.  He walks on his toes without shoes whenever possible and especially when excited. He is small in size, very independent and has a great sense of humor.

My boys share personality traits also. They are both creative, insightful, and incredibly smart. H has said on more than one occasion that he has Asperger’s too, “just like W and Daddy.” He will be doing an art project or something else that has his attention and he will make that proclamation. Totally out of the blue. I ask him why he thinks this and the response is always the same…”because I am really creative and smart and sometimes I have a hard time with the rules.” This definition of Asperger’s is so simple and so true. This is an H-ism that I hope we never grow out of.

Get Your Stretch On

I used to view parenting as an opportunity to share something of myself , to teach and to pass down wisdom. In that belief there was heirarchy with the power being with the parent and not with the child. These were all the beliefs I had before I had children.

My views have changed dramatically, not completely and they have definately become more complex. Both of my children have forced me to look at myself in ways that no one else could ask me to. I guess they could ask, but I wouldn’t feel compelled to listen.  Lately I have been thinking about the way our society is set up and how that relates to W.  His mind is so full of ideas that are creative and inventive. When he has room to tinker with those ideas he is absolutely brilliant. He is happy. Everything is in sync. When his mind is occupied with something he enjoys, his social skills are better and he is less prone to agitation. Isn’t this true for everyone?

The huge difference, in my opinion, is that most people can filter out those big ideas when the situation asks them to do so. Or they see the value in channeling their creativity to appeal to or include others. Or maybe they would rather go with the flow and follow a leader. Whatever the case, most people see why it matters to do what is expected from the larger group. In most cases it isn’t even taught. People just know.

Trying to teach this to W is unbeliveably hard. It seems with each day he is growing more and more frustrated. On the one hand, I see the importance of social protocol. It makes things easy, and organized. When you follow social protocol you know who has the power, or whose turn it is to talk, or what is appropriate to talk about. When you don’t follow social protocol you are an outcast and you create chaos. That is something that most people are really uncomfortable with. Especially in school and other large public places. On the other hand, as in the case of my husband and W, it can make things confusing and cloud the larger issue which, to them, would be experimenting and engaging in ideas.

I look at W in his school environment and I am reminded of a wild animal. The more you try to cage him and teach him a new trick the more agitated he becomes. My husband and I have been talking a lot about authority and how it relates to parenting. During one of our discussions he suggested that if you are going to be authoritative, you have to be willing to go all the way. Going all the way would be corporal punishment. Spanking. Spanking sucks on so many levels. I hate it. I’ve done it and I hate it. It takes me back to that wild animal image. That is a method of training. You are teaching obedience through pain. Neither one of us wants this. There is so much pressure though to teach W the rules and he pushes back so hard that sometimes it feels hopeless. Like he will never get it.

But I know better. W is a smart little cookie. He loves reward systems for learning, but they get old, fast. I am not sure he is really learning anything . I think he does what is being asked of him to get the reward. He’s not learning the importance of doing it. He isn’t learning the why does it matter part. Only when he learns that part will he grow to be a social thinker.

I watched a pretty huge transformation in my husband, who also has Asperger’s. He and I have been together for 16 years, since we were 20 years old. When we began dating, I was drawn into his intelligence and his creativity. It seemed like he could do absolutely anything and he had extensive knowledge about so many things. I affectionately called him the encyclopedia. I still feel that way about him. He has the patience of a saint and will spend hours upon hours teaching himself to do things that no one sees the value in at the time. The rest of society catches up eventually and suddenly people want to tap into his brain so they can learn from him. This used to make him pretty angry. He felt wronged a lot of the time and so had no reason to care about social protocol. Social protocol was screwing him every time. Of course, this was before we knew he had Asperger’s and when he would get this way I would tell him he was being pompous. I told him that he needed to respect the opinions of others and learn when to talk and what to talk about. I started seeing his behavior sometimes as stirring the pot just to piss me off. Those were tough times, but always he was loving and patient with me. Looking back on that time, knowing what I know now, I am amazed sometimes that he and I are still together. But then, I’m not amazed because I think we found each other for a reason.

He has since found his place in society. He works for himself and all the good parts of him shine through so that because of his differences people want to be around him. This didn’t happen because someone shoved it down his throat until he was willing to comply. It happened, I think, through trial and error and having knowledge and skill that is valuable to others. Most importantly I think it happened because of our little boys.

We change when we have to. I have been thinking of our family as a family of shape shifters. I like this image way better than the one where we are taming a wild animal. We bounce off of each other and absorb the shock. Sometimes we melt into each other. Sometimes one of us is rigid, usually me or W. We tend to get stuck. I am learning, from my guys that being rigid hurts and that flexibility is good for everyone. This is the new yoga.

I’ll Take Therapy For Two Please

I knew this week would be hard and I felt so prepared for it. I should know by now that preparation really only makes one of us feel better. I’m sure that in some indirect way my preparation makes some things easier for both my kids, but I can’t put my finger on which things. 

So, it is Wednesday and we are halfway through the first week of summer and I realize that this is the day W’s play group therapy starts up again. He loves this group because it is made up mostly of boys who have Asperger’s and he fits in. He told me once about group that it was a place where he can talk about Asperger’s and that everyone there understands him. For me, that is all I need. For him to feel accepted is enough.

Group didn’t meet at all in May so this was the first time back since the end of school. It was a rough transition back. It has been a rough week and it was most definately a rough day. In the words of Alexander it was “a terrible, horrible, no good, very bad day.” It started out okay with a free summer movie at our favorite theater. The perfect answer to a rainy, chilly June day, except they were having technical difficulties with the sound. We ended up watching the movie at very low volume with a buzzing noise over the top of it. I couldn’t wait for it to be over.

At home is when I noticed that he wasn’t comfortable in his skin. He was leaning on me, leaning on the dog and just generally looking floppy. When he does this I know that there is trouble brewing. I wish that there was some magic trick that I could perform so that he would feel better and we could go about our day. I get so irritated that the “sensory diet” ideas don’t seem to work for us. We have it all. Swings – indoor and out. Bikes. Mini-trampoline. Fidget toys. Games. Therapy Putty. The list goes on and on. How can this stuff work if the kid doesn’t want any part of it when he needs it most?

When he is like this he doesn’t want anything. I ask him in my best excited voice, “Hey, you wanna take Chippy for a walk and you can ride your bike?” His answer, “No, I just want to lay here with him.” He is laying on him. Chip is an amazing dog. We got him through Support Dogs as part of their Youth Companion program and it has been wonderful. I was trying to appeal to his desire to be with Chip while giving his body what it so clearly needed, but he didn’t take the bait. He hardly ever does.

Before long he was refusing everything. Even group. This was the thing I thought he needed most and so I was clear with him that skipping group was not an option. I told him we were going even if we were late. In all the therapies we have done, I have learned that if you skip because of behavior you are teaching that the behavior will get you out of the commitment. And so, we eventually got out the door.

We were 15 minutes late and I was on the verge of a meltdown myself. I felt so overwhelmed by our day and so unprepared. The whole drive there I was wondering what I had actually prepared for last week. Was I totally delusional to think that an organized house, a daily routine and all my sensory stuff in place was going to make a difference for him? I am sure that next week all these things will help, but that doesn’t help me now does it. The last thing I needed or expected was to get chastised about being late from the group leader. But that is exactly what I got.

“Mom, you really need to make an effort to get here on time.” She says this to me as she is handing me the paper and markers that he insisted on bringing with him, even though I told him that she wouldn’t allow it. We had just got there and he had disrupted the flow of group. I couldn’t believe it. I felt like a crazy person. I was immediatly back in highschool, late for school again because I didn’t hear the alarm. She took note of how stressed I was after saying this to me and said, ” I understand it is hard.” “No you don’t.” I replied after she closed the door.

In all fairness to her, she has never had children and is wonderful with mine in such an unexpected way. She is extremely rigid with the rules and can be somewhat harsh, but somehow it works for W. Having those other kids around him who share common neurology and having her brand of personality guiding them in their social thinking, I don’t know how, but it works. She was not intending to scold me, it’s just her way.

Thank god I wasn’t alone in that waiting room. The women who were there waiting for their sons were the best gift. It is an unbelievably good feeling to know I am not alone during the worst of days. I don’t have many friends who have the understanding that these two women have of my situation and I of theirs and to have had that today was wonderful.  Most of the time around friends I feel like that family. You know the family who is loud and whose children say the wrong thing in front of the wrong person. Or the family who has to leave early because the kids can’t handle the situation. Or the family you don’t call because you’re just not sure you should. Around these women I feel like one of the gang and I am not embarrassed about anything. 

As with all therapies we have done with W, it is hard to know how much this group is helping him be a better social thinker. Some of his progress is maturity and some of it most certainly is this group. It is hard to measure though. The one thing I can say is that he was a much nicer little person after group and I was breathing easier. My shoulders were descending from their attachment to my ears and it was all thanks to those other Aspie Mamas. Hopefully, one day I can return the favor.

Aaaaand We’re Off

We welcomed summer with a bang today. W and I were up by seven o’clock discussing the days schedule. H is a late sleeper so I knew that we would have plenty of time to hammer out the details of the day over coffee and cereal. It was a process. He got out his Daddy’s laptop as a special treat and created a work station on the kitchen table. He had the computer elevated on a cardboard box about four inches high for a nice effect and to protect the computer while he was eating his cereal.

First we made a list of “We might’s”. These are things that we want to do over the summer break so that we don’t forget. It goes something like this. We might go to the zoo. We might go to the Magic House. We might go fishing with Grandad. We might go camping. When I suggested adding the pool to that list he said, “No, that goes on the ‘We will’s’ list.” I was glad he cleared that up because I wasn’t aware there was a difference.

Once that list was made we started talking specifically about today’s plan. This is when it got tricky. At school he is used to things being done in 20, 25 or 30 minute increments. At home we do something for as long as it takes. And even though he complains about these fast transitions at school it was obviously something he was craving or expecting or used to. I’m not sure what was motivating him. Probably just sameness and routine.  The morning part of the plan was pretty easy to deal with. The times were simple and we didn’t have much to do. Walk the dog, run up to school to get some things we forgot, have a little free play time. It was lunch and the afternoon that had me hustling to keep up with the times he insisted on.

Lunch 12:00 – 12:35

Clean up after lunch 12:40-12:50

Pool 12:55-3:20

I warned him that at home it is hard to stick that closely to a schedule and I told him that having a routine was great and it is also really important to go with the flow. He was listening, but I know he didn’t hear me.

H really has a way of pushing W’s buttons. He’s five and loves to get a rise out of his brother. It is hard to balance the attention between the boys. W requires a lot of attention and unfortunately lately he has been pretty explosive. Of course at those times all of my attention is on him because I am trying to keep everyone safe and calm him down. I see H doing a lot of things just to get that attention. A lot of it is typical five year old stuff, but I know some of it is him testing out ways to nab the focus off W and on to himself. I sometimes feel guilty about that.

Anyway, we made it to the pool behind schedule and W wasn’t happy about it. Both boys were not happy with how crowded the pool was. It was crazy. We were totally out of sync. W was having fun playing with a friend and H was complaining and asking to go home. Then it was the other way around. I had finally had enough and we packed up to go home.

At home I could feel the meltdown brewing. I was doing everything in my power to make it stop. I tried therapy putty, swinging, writing on the computer. It just kept building and building until he finally exploded over the silliest thing coming from his brother. H was playing office and pretending that me and W worked for him. W said that he didn’t work for him that he was doing work for Daddy’s company. He said this in his most frantic voice. I really think he believed that H was being serious. He had no clue that this was a game.

The meltdown totally sucked the life out of both of us. Today it was easy for me to manage him though. I really felt bad for him. I always do, but for some reason today it really clicked for me how hard all this change is for him. Often in the heat of the moment my own emotions get in the way of seeing all his rage for what it really is. Sadness, fear and confusion. And it is such a release for him to get it all out. All those feelings cloud his senses and he is so out of touch with himself and everyone else. I can see him come back into focus afterward and I am so glad to have him back.

We were in the kitchen and I was doing the dishes in my own world thinking “what the hell just happened” and trying to get myself centered again when he comes up to my side and says “I’m sorry Mama. Why aren’t you smiling?” I told him “What just happened felt sad for me, that’s all.” To which he responded, “I know. Would you smile now?” I looked down at him and he was searching my face and then he smiled at me.

I couldn’t help but smile. Welcome, summer.