New Beginnings Are Hard

I found a picture in W’s backpack of him and his teacher Mrs. N. I knew when I found it that he would want to put it someplace special. He loves Mrs. N. It was an emotional day for him because it was the last day of school and as he puts it “the last day for me to enjoy first grade”. I am blown away sometimes by how perceptive he is about things that most of  his peers give very little thought to. I have heard it said many times that children with Asperger’s and other ASD’s have no emotion and miss out on relationship building. I couldn’t disagree more.

W goes about building his relationships in a very unconventional way and so has trouble with his same age peers. Most kids his age don’t have the patience or understanding to follow his lead to friendship. This is why, I believe, he has such intense attachments to the special adults in his life. It has been very painful at the end of each school year for him to let go of his relationship with his teachers or to understand how the nature of the relationship will change. In his mind, there is no reason for this change and that it is a silly formality that we don’t just continue to hang out with his teachers. If it were up to him we would have his teachers and their families over for dinners and to play on a regular basis.

Sometimes I wonder what it would be like if those boundaries that we neurotypical folks adhere to weren’t so solid. Sometimes I think that W is onto something and that the way he thinks about relationships is more evolved than most.

Anyway, I found this picture and decided to give it to him as he was reading books before bed. We hung it up right next to his bed and then he started downloading all about how much he will miss Mrs. N and how he is sad that he won’t see her until next year. He said he didn’t understand why he couldn’t just keep the same teacher over and over. I felt sorry that I had brought the picture up right before bed because he had been upset earlier and I didn’t want to upset him. I thought having it would make him smile, and it did, but it also reminded him of the sadness he felt. We talked a little more about how he was feeling and then I kissed him goodnight.

Five minutes later I hear, “Mama, can you come here?” I walk to the bottom of the steps and see him standing there with tears streaming down his cheeks. My heart was broken for him. We climbed into bed together and he sobbed about how she was his best teacher and that he would miss her so much. When my husband asked him why he was feeling so sad he said “because I can never go back to first grade.” Then all the fears started coming out about second grade and a new teacher. Mrs. N understands him and what he needs, he says, and what if the new teacher doesn’t understand that?

Good question. This is the question that I ask myself every year. And every year it gets harder to answer. With as much as he matures each year, the challenges change. Some ways it gets easier and in some ways it gets much harder.

He understands cues enough to pick up on how people feel about him. He can tell that his P.E. teachers are frustrated with him and the challenges that he represents. Having this knowledge doesn’t change who he is or make the difficulty he feels go away. It just makes him feel worse about himself on top of  feeling out of control. He pointed out to me tonight that he didn’t want me to read to him because I was “all stressed out.” That was hilarious to hear!

He misreads cues sometimes too. He became really angry with one of the aids, who up until this point had been his favorite. There was a lot of stress for him for about a week and it just escalated until he finally refused to work with her. All week long I was questioning him about why he was feeling this way about her. He just kept insisting that she was angry with him and that she didn’t like him. Turns out she had stopped giving him mints as a reward because she didn’t have any left. That’s it. That’s what had him so upset. He saw her not giving him mints as a sign that she didn’t like him anymore.

I am so proud of him for the connections that he makes that are successful. I know that with time this will get easier. I share his sadness now though that the relationships he works the hardest on at school are the ones that are guaranteed to change because they aren’t permanent. This isn’t to say that he won’t continue to have a relationship with Mrs. N or any other teacher. But for him, the consistency of the relationship provides so much comfort and security and it is painful when it changes. It isn’t just about the consistency in the routine or schedule as some might suggest. It is about people. He loves people, especially those that love him back. This is one of the most endearing things about him.

Plan To Change Plans

It seems like yesterday that the boys were little. I mean, they are still little, but I’m talking about really little. W was 2 1/2 when H was born and now they are 7 and 5. I remember so vividly the day things changed for us. It seems like so long ago, but also like not much time has passed and so much has changed since then. My perspective, my attitude, my relationship with my husband, my expectations for myself and my family – all so very different than the time before we knew that W was somewhere on the autism spectrum.

He was 3 and attending preschool two afternoons a week. He loved going to school and was one of the only kids in his class that didn’t cry when I left. He would walk in and go straight to the easel, pick up the brush and write 1 2 3 across the top of the page and a W with a circle around it in the middle of the page. Then he would go find the blocks and sit down to build. His teachers and the other parents were amazed that he could write his letters and numbers and were shocked that he could read. I had no explaination for his talents and sometimes felt like I was lying when I told people that I didn’t teach him those things. He just knew them, plain and simple.

After about 6 months of school the director called me into her office. I didn’t much care for her. She was hawkish about W and I always thought she had it out for him because he was a little different. But I was intimidated by her and so I listened to what she had to say without much question and immediately started to panic. She told me that she was concerned that W was displaying echolalia and that she wanted my permission to have a speech and language pathologist test him and that echolalia is sometimes associated with autism and that I should make an appointment with this doctor friend of hers. I was so overwhelmed I couldn’t believe it. It was like my brain shut down and my emotions completely took over.

We had no idea what we were getting into making this appointment with this doctor. I was told that  W was getting a “developmental screening”. So, I thought there would be playing involved and then the doctor would tell us what our pediatrician always told us. He’s creative, maybe he’ll be an artist someday. I LOVE our pediatrician. I should have called her before seeing this guy and saved myself a ton on heartache, but  then again, the lesson was so valuable. I filled out a mountain of paperwork prior to the appointment. Developmental milestones, all on target. Brilliant mind, what could be wrong with that? Temper tantrums lasting more that 30 minutes sometimes, seems age appropriate to me.

We got to the appointment and were put in a room with no toys and no books. We waited for 15 minutes before the doctor came in and within 5 minutes he diagnosed W with autism spectrum disorder PDD-NOS. He then asked us a series of questions, not once addressing the child in the room. I couldn’t believe it. After 45 minutes of this, W started to get pretty frustrated. He kept trying to open the door to leave so the doc put his chair in front of it to block his way. It was almost like he was baiting him to have a meltdown. And of course, when W lost it and hit me and then hit little H, who up until that point had been sleeping in his carseat, he got out his prescription pad and wrote us a script for Risperadol. It was incredibly sad and shocking.

We never went back to see that doctor and when our pediatrician found out who we had seen she said he is known as the “autism doctor”. You go see him when you need a diagnosis of autism and some meds to fix it. I felt so mislead by the school and I was so angry.

W is seven now and has never been medicated. He has since been diagnosed with Asperger’s Syndrome and we deal with the challenges that we face one at at time. I never want to feel as overwhelmed as I did that day in the directors office and the days following that doctor appointment. I have gone from denying the diagnosis to embracing it and advocating for my son.

Through W’s diagnosis we discovered that Asperger’s Syndrome explained much of my husbands childhood and current social awkwardness. This was hard for me at first and is sometimes hard on our marriage. I always thought of him as socially aloof and found it quite endearing and very charming. I read an article by David Finch in the NY Times, http://www.nytimes.com/2009/05/17/fashion/17love.html, and it really hit home. He talks about how the things his wife found endearing and cute before marriage and children, became the things she complained about the most. The same is true for us. I still find his aloofness cute and his natural charm makes him undeniably loveable, but I wouldn’t be honest if I didn’t admit that there were things that I thought he would just “grow out of” that he hasn’t. He is messy, but extremely particular about the care of things. He is logical and literal and finds it very easy to argue without his emotions getting the better of him. This can make him seem arrogant and without feeling. He is meticulous even when doing the most basic of tasks and so it takes him way longer than most. These are the things that have threatened to pull us apart.

Accepting and understanding these things has been easier for me because of W. Through my understanding of him I am learning about my husband. I didn’t like it at first. It was like it watered down my understanding of W or maybe it was just too much for me to take in at the time. But now it makes so much sense and I am able to look back on so many situations that left me feeling dumbfounded and understand.  

I was talking with my sister today who is engaged to be married. She was telling me that while she doesn’t feel in a rush to be married it is just something she feels compelled to do despite the fact that she just graduated college and doesn’t have a job. Much of her life is uncertain, but she is in love and excited to enter this phase of her life. That is the one thing that she is certain of. That is the only thing she can be certain of. Jobs come and go, stability comes and goes. No amount of planning guarantees anything and there is no insurance that you won’t get totally screwed. When I got married I didn’t envision the life I have now. I didn’t plan for autism. I don’t think anyone does. What I told my sister is that it is how you handle the unplanned situations in your life that show your character. That is when it counts.

Who Needs Sleep?

W can’t sleep. He is so tired, but his mind just won’t shut off. Last night at 9:30 (he had been in bed for an hour) he called me to his room because he wanted to tell me some things. He talked for 2o minutes straight, stream of consciousness style. I call this downloading. He does it almost every night, but not like this. This was like major download. Most of it was about school. School is hard, it’s too much work, he can’t focus on his work because there is all this other stuff going on, he can’t keep track of his work, his teachers don’t understand him, his friends don’t understand him, he doesn’t have any friends and he needs a break for one day.

He said all this to me the sleepiest voice, trying so hard to keep his eyes open. I felt bad for so many reasons. I felt guilty because when he called me to his room I was frustrated because I just wanted some time to myself. He started telling me all this stuff that was in his head and I wished in that moment that I could do something to make things easier for him. That is the trouble with Asperger’s Syndrome. The things that come easy for him no one cares about.

Oh, sure, people care about him and it is charming that he knows so much about maps and street signs and clocks. And it is great that he has been reading since age 2 1/2 and that he has an unbelievable memory and that he can hear a melody and play it on the piano with very little effort. All undeniably cool stuff.

That stuff doesn’t integrate well into a large group setting. In a classroom full of twenty kids these things don’t matter. Because suddenly you don’t see these cool things. What you see is a child who doesn’t follow the directions and does things his own way and hyper focuses on things that are trivial to everyone else. He doesn’t perform up to his ability and doesn’t come close to looking like the intelligent little person that we know him to be.

There are glimmers of progress. Stellar days sometimes. Those days leave me wondering what was so different? I honestly can’t say that we have done anything different at home to make those days happen. I am starting to think that he holds it all in until he can’t any longer and then he just explodes and we get a series of days like today. He is so obviously frustrated and I feel absolutely powerless to help him.

He has one more week to go of school and  it will be hard. The routine will change and there will be a lot of excitement all over the school. He will absorb all that excitement and bring it home each day and who knows how it will manifest itself.

If I play my cards right it will manifest itself as a lot of energy at the swimming pool and then a lot of much needed sleep at night. Sleep can’t solve all our problems, but it sure can help.

Superflex Is Where It’s At

Social Thinking

My son, like many people with Asperger’s has a tough time socially. He is an extrovert and will make attempts over and over again to draw people in to what interests him. He likes to share knowledge and ideas with anyone who is willing to participate. When he has a willing participant, he is at his social best.

Unfortunately, this only happens some of the time.  When he is being asked to leave his comfort zone is when we run into problems. His school day seems to be one uncomfortable thing after another with a few areas of comfort mixed in. But, sadly, I do think most of his day is spent in a state of confusion which, for him, manifests itself in the form of disruptive behavior. This can range from singing, making other noises with his mouth, moving his body in an unexpected way, leaving the group, or lashing out verbally to his teacher and peers.

This is the bad news. The good news is that his teachers are using a curriculum with him that I believe to be genius. It is called Superflex and was developed by Stephanie Madrigal and Michelle Garcia Winner. It is a curriculum teaching kids how to be better social thinkers while following a story line that most kids enjoy. Superflex is a superhero who has a super flexible brain. His job along with W’s help is to defeat the other superheros who have power over our brains called the Unthinkables. The Unthinkable that W struggles with the most is Rockbrain. Rockbrain makes people get stuck on their ideas so that they are unable to focus on anything else.

This curriculum is hard for him. It pushes him way beyond his comfort zone, but does so in a way that the focus is off  him and on the Unthinkables. He has formed the opinion that Rockbrain is not a very nice guy and that he can make people feel like he doesn’t care about them or their ideas.

We are using the same language at home, and while at first he was really angry about it he has come to be okay with it. He knows that he has Asperger’s and what that means for him. It is a difference that he is proud of and I wouldn’t want it any other way. When he gets frustrated about the things that are hard for him I remind him that he has the ability to learn strategies to make social thinking easier.

I am happy that we have Superflex to help.

Water, Water Everywhere

He loves water. When he was little he would stand on a chair at the kitchen sink and play with funnels and containers for as long as I would let him. Which was usually until his little fingers and hands looked like prunes and he would still put up a fight about stopping. When he was a little older he developed a fascination with toilets. He liked the vortex and the big swish that went round and round, but he didn’t like the noise and so he started building  his own “toilet flush” with his water toys.

It didn’t take him long at all to figure out how to make the vortex using the funnel and holding the water hose at just the right angle. Then he needed a handle, which could be a wooden spoon or a straw or really whatever was within reach. I miss seeing him standing on his chair making these creations. His creativity didn’t end at the sink though. At the pool he would call over to me “Mama, look at my toilet!” I would look over to see him standing with his funnel next to the waterfall in the pool beaming with pride.  He would then demonstrate the flushing with an extra long and powerful vortex while asking over and over “Do you see the vortex? Don’t you like how fast it goes?” and then refill the bowl so I could see it again. That always got us a few curious looks.

Now, he still loves water and he experiments with it whenever he can. It’s just that after all the faucets in the house have been taken apart a few times they stop going back together correctly and the little screens go missing and then everytime you turn on the water you get splashed. This is what water play has done to pretty much every sink in our house.

Now that the weather is warmer he will head outside with the garden hose as his water source. For this and many other reasons I am happy it is spring! Now on to replacing the faucets in the house!

My First Mate

At our house we have adopted ship terminology to establish the hierarchy. W didn’t learn this from being on an actual boat, but from Trader Joe’s. Their store managers are “Captains” and the assistant manager is the “First Mate.”

Last night I hosted a party at our house for my Mom who sells Silpada  jewelry. You might think that aspergers would keep my son from wanting to be in social situations, but it is quite the contrary. He LOVES being social and especially loves playing host. I think this is because there are a lot of jobs to be done when you are the host. He seems to thrive when there are tasks that don’t take too much time and that all link together somehow. This is why, I think, he asked if he could be my first mate at the party.

I asked him what it meant to him to be first mate. And his reply was “Oh, you know serve drinks and show people around.” We talked a lot about the social expectations of being a first mate at a party with a bunch of ladies shopping for jewelry. I was amazed by how many good ideas he had for making people feel welcome at our house. A few of them we ultimately decided were not the best choice for the party, like making announcements over the “loud speaker”, which is basically him calling our house from my cell phone and answering on speaker phone and talking into the cell so that his voice echoes throughout the room. We also nixed the idea of him modeling the jewelry.

All in all the party was a great success! He was a great host. He introduced himself when he answered the door and showed people where the drinks and appetizers were. He offered name tags for everyone and even gave an ink color choice!

We all want is to be accepted for who we are. W is always going to do things a little bit differently and he will probably make some colossal mistakes along the road to learning to think socially. I can’t imagine what it is like for him trying to learn what comes completely naturally to most of the population all while trying to integrate and keep up with the rest of the world. It must be so frustrating and completely confusing. I see it in him when he melts down. So much of his day is spent trying to figure out what everyone else is doing and why that should be important to him. So, it makes me so happy to see him in a situation that gives him so much joy and to see that joy radiated back to him by others is the icing on the cake.

This is a good one…

Somewhere Inside, A Path To Empathy

I just read this article written by David Finch for the NY Times and while the authors aspergers manifests itself a little differently than my husbands I really identified with this story. I think it is wonderful that these two people have chosen to help each other and reconnect in their marriage.

Yep. Authority Still Doesn’t Work

Every now and then I slip back into thinking that I can deal with my children the way my friends deal with theirs.  It’s almost like I need to check and see if it will work. Like maybe today we’ve moved past that part of them that doesn’t notice that being the Mom makes me the ultimate boss. Not that I want my children to fear me, but I envy those parents that can give a single look and it stops the behavior in their children immediately. No words necessary. Or those parents who say “I am only going to say this once”. Yeah right.

I’ve tried these things and more. Repeatedly. It never works. Why do I continue to try? It’s like once a month or so I forget momentarily, but long enough to make it worse for myself, that my seven year old son has aspergers. In the moment, I just can’t stop myself. There is a voice inside and sometimes one on the outside (belonging to my husband) telling me that W can’t understand what I am asking of him or that I am going about getting what I want the wrong way. I know that it is true, but I try it anyway.

When I have had my fill of trying I feel a great sense of release. I am frustrated in the moment and then something clicks and I see him for who he is again. He is so sweet and loving and smart. He is so confused too. It’s kind of comforting in that moment to know that we are both confused. For different reasons, but confused non-the-less.  In that moment we share a common ground.

The Cliffs of Insanity

It always happens like this. We are having a great evening. The kids are getting along and actually playing together. Like really getting along. And then one of us – tonight it happened to be Eliot – suggests that we do something out of the ordinary. He suggested that we watch a movie as a family. Of course, it was 7:15 when he came up with the idea, the grass was half cut and needed to be finished and the kids were covered with dirt and needed to be bathed. A sane person would have looked at all that needed to be done and said, eh, we’ll do it another night. But we went for it.

I showered the kids while E finished the lawn and went to get the movie. We were torn between E.T. and The Princess Bride. We opted for the later because it is shorter. We put in the movie, made popcorn and passed around some treats. We had a great time.

The movie ended at 10:30. Two hours past bedtime. W is totally revved and getting his second wind. He is running around repeating “the cliffs of insanity” over and over again, wildly laughing. I thought this was actually a very appropriate line from the movie for him to be repeating at the moment because I knew what was coming. Total chaos and insanity. I managed to get his teeth brushed during the post movie craziness and thought I might get off easy and be able to talk to him quietly as he drifted off to sleep, but upon going into his room he announced that he would not be sleeping tonight until “way later” and that in fact he would be drawing in bed with his new Flair felt tip pens and that I would have nothing to say about it. I know that somewhere in his head he knew that I would not agree with this concept based on pure logic, nevermind his tone of voice.

Twenty minutes later I am reading to sweet little H, who has been patiently waiting for a story while we are trying to diffuse the chaos from his big brother. As I was laying with H and he was falling asleep I started to feel mad at myself for deviating from the routine and allowing this late movie. Everything I read about autism tells me to stick to a strict routine. After all that is what most kids need – autism or not. Kids need routine. Well, he has a routine and even when we don’t deviate he has meltdowns. Big ones sometimes. He was even saying it himself during his rant. “Why did you let me stay up late? I wanted to write with my pens and I watched that stupid movie and it had those battles and so now I am battling with you because you’re stupid. I am suppossed to be going to the park to ride my bike tomorrow and now I will just have to sit under the pavillion and write with my pens. All because of this stupidness!”

It’s easy to assume that what he was angry about was the lack of routine. He said it himself. A year ago I would have been convinced that we just shouldn’t have let him stay up. That his little rant was a plea for the normal bedtime routine. What I couldn’t see then is that he had some new pens and he was excited about using them. He wanted to spend some of his time using them before bedtime. He had them out all throughout the movie and he wasn’t expecting to not use them while he was watching. He became so stuck on the idea of using his pens that he couldn’t put it aside once the movie ended. I thought he forgot about his pens, but I have come to realize that he doesn’t forget. He just puts things on hold for awhile.

I think I am right to have a  routine for certain parts of the day. Both of my children benefit from this. I don’t think it’s right to assume that every meltdown could be avoided if I would have just stuck to the routine. And even if I could avoid all meltdowns by sticking to the routine I don’t think it is the wise thing to do.  Wouldn’t that be teaching him inflexibilty instead of flexibility? Isn’t that giving in to the challenges that asperger’s presents him with rather than challenging them? Would it be okay for me to not shift my perspective so I can better understand my husband and children just because I am not wired that way?

As much as I want to run from those insane moments and do everything in my power to make sure they never happen again, I know I won’t. And that is a good thing.

Wait…what?

So, this morning was a special day at school for W. He and his first grade class had invited the moms to come enjoy a breakfast of donuts and juice and a special surprise performance. He was so excited about it! All the hard work that he had been doing was going to come together in this great morning. The first part of the week  he was telling me in his best sneaky voice “You are just going to loooove what we have planned for you in my classroom!” And then again later in his softest, sweetest voice “I just love you mama.” Whenever he says that to me followed by an ear to ear grin, my heart just melts. Anyway, back to this morning. We had a nice morning of getting ready with no resisitance about really anything. We are getting ready to walk out the door and I said I thought how nice it was that he was doing this at school and that I thought his teacher really appreciated the work that he was doing to help get the morning ready. It was at that point that I should have stopped talking. But no, I had to continue on by asking if there was a special job for setting up once he got to school. Just trying to make conversation. Bad idea. He said he didn’t know and could he call his teacher to let her know that we were just leaving and ask if there was something she’d like him to help with. I said that he could call from my cell phone and he did and the conversation was great. She said she was just putting on the finishing touches and that she was excited to see him. He hung up the phone, we are in the garage at this point, getting into the car and he throws his backpack down and yells: “I didn’t want to wear this! I wanted to be fancy! I am going upstairs to change.” He wanted to wear his tuxedo because this was a special occassion. It wasn’t clean. The pants have been rumpled up on my closet floor since the last time he felt the need to be fancy like two months ago. I won’t go into details about what happened next, but let’s just say it was not good. He was frustrated and angry and I was trying to be understanding and find a compromise. This process took 30 minutes and involved a lot of yelling on his part and refusing to go at all and “you are the worst mom ever” kind of stuff. My heart was broken for him because I knew that once he came out of this obsession with wearing his tuxedo he would feel sad that he was late and upset because he missed some of the party. It is at these times that I struggle with what is important. Part of me was saying to myself that I should just let him wear the dirty pants to school and be done with it. But then the other part was saying that I have a responsibilty to teach him about hygiene and more importantly, flexibility. Should I have changed my mind in the middle of the melt down and just let him wear the pants? I really wanted to. I really did, I just wanted him to have what he wanted so that he could have his moment at school that wasn’t going to wait for him to figure it out.

It ended up working out. He wore his jeans with his tuxedo shirt and his fancy shoes. After he was dressed, he looked at me and said he was sorry for all the yelling and terrible things he said. He said he was sorry that he made us late and that he was sad about it. Just as soon as he said that though, the most amazing thing happened. It was like the whole bad part of the morning was gone for him. He picked up right where he left off before the meltdown. That is one of the greatest things about him. He doesn’t hold a grudge or hang onto the feelings that bring him down. He doesn’t sit and brood over situations after they have passed and he never stays angry after an apology has been given or received.

Is that part of his aspergers? Who knows. But, I want to be more like that.