Sharing Secrets

“Hey, Wolfie, I want to tell you a secret.” Hammy said this to Wolfie yesterday afternoon right after Miss. N arrived. Miss. N is our ABA therapist and it was her first day. Wolfie didn’t feel like hearing a secret so I asked Hammy to tell me.

“I don’t want to be violent or disrespectful while Miss. N is at our house,” he said in my ear. Little sweetie. He was remembering the time a few weeks ago that Miss. N came to have a get to know each other play date and things between him and Wolfie went sour. There was some kicking, hitting and a lot of back talk. He was embarrassed about that. I told him I thought that was something he could say out loud and I encouraged Wolfie to listen. Hammy said it and Wolfie agreed with him.

Miss. N said she appreciated that both of them were having such positive attitudes. I’m sure you can guess where the story is going.

Things were going fine until Wolfie earned 8 points and was given the opportunity to pick a choice out of the box. The box is full of special items that the kids will get to choose from when they earn 8 points. Once the playtime with the chosen item is over, it goes back into the box until points are earned again. The items in the box aren’t to be played with outside of when Miss. N is here.

This was explained to the boys several times prior to letting them see the box. Everyone said that they understood the rules.

I bought all the items in the box with both boys in mind. These are things that I knew they would be interested in, but that I didn’t want to give them access to all the time mainly because they are messy or have the potential to get messy or out of hand. In short, adult attention is pretty necessary.

Wolfie chose the fountain pen. He LOVES pens. He loves to make signs and he especially loves to make signs with cool pens. The pen is cool. Miss. N made signs with him and challenged him a little with how he makes the signs. He handled it well and earned a few more points. Then it came time to move on and so the pen had to go back into the box.

This is when things got ugly. I have seen things get ugly like this before, but there was a major difference this time. I had a professional there with me who was supportive and kind. She coached me in how to handle the meltdown and together we got him to calm down. It was hard. And it was heartbreaking. But at the same time, not. It’s weird, I think I have lived with for so long and become used to these meltdowns so much that the sadness has been squeezed out of me and in it’s place is resolve and determination.

I know that Wolfie can learn to control himself. I know he can do it without medicine. I know he can do it because we love him and are committed to helping him no matter what.

I almost think that the absence of my sadness is what makes things work when they do. He had to calm himself down. And after about 20 minutes he did.

I am a firm believer in at home therapy. There is so much good that comes of it. I am involved and learning, as is the rest of the family. This therapy isn’t just for Wolfie. Hammy, Eliot and I will all benefit individually and collectively. I believe that doing this as a family will strengthen us and solidify the relationship that Hammy and Wolfie have with one another.

“I think I have something that will help Wolfie!” Hammy was walking around on his toes with a piece of paper in his hand and a crayon. He looked excited and he was talking with urgency. He felt bad that his brother was having such a hard time and he wanted it to stop. He had written him a note and he wanted to slide it under the door to Wolfie. I told him I wanted to read it first. It said, “You are bad.” Miss. N looked at it and said, “Maybe there is something positive you could say to Wolfie instead.” They decided on something together and he wrote it down.

“I hope you get calm,” the note said. He slid it under the door. There was a brief silence followed by a a request for a pen. Wolfie sent the note back under the door. I turned it over and read his writing. “Thank you, Hammy,” was what it said.

It was one of the sweetest things I have ever witnessed.

It is no secret that life is challenging sometimes in our house. We have shared stories in hopes that it will help another family and we have sought help from our families and close friends who understand. But there is something about having someone who doesn’t know the back story witness what happened yesterday. It made me feel lighter. She has no emotional ties to Wolfie or to me, yet she was empathetic and offered no judgement. She had the ability to see what none of us on the inside can see because we are so attached and so in love with our little boy.

I am glad that the big meltdown happened on the first day of therapy. Maybe now, we can begin to make some headway. I know it isn’t the last big meltdown we’ll ever see, but it is a step in the right direction and that is how you start. Baby steps.

It’s The Little Things

I got to eat lunch with the boys today at school. That is always so much fun. It was especially fun today because they were both having really great days. I was proud of Hammy because he walked into school on his own with Wolfie this morning. No tears and very little fear about it. Wolfie was very proud because he could help Hammy and do a good job at being big brother. I drove away from school this morning without that dull ache in the pit of my stomach and I was grinning from ear to ear. 

Today was fancy day for Wolfie. I have agreed to let him wear his fancy clothes to school once every two weeks. He loves to dress up in his nice shirt, his tie, dress pants and dress shoes and belt. He looks like he is going to work. The image of him dressed like that, holding Hammy’s hand on the way into school is one that I will always remember.

I was standing in line at Subway getting ready to order Wolfie’s lunch when my phone rang. I recognized the number immediately. It was school.

“This is Mrs. S’s room, Wolfie speaking!” This is what I heard when I answered. He sounded so happy!

Before I could finish my hello to him, he was telling me as fast as he could that he had just had a fire drill AND an intruder drill and he did just fine. He said he was a little afraid of the intruder drill, but that he was really OK. He was so, so proud of himself.

There was no announcement of the drill. It just happened and he was absolutely fine. I am so glad that the new school counselor was willing to try this out with him. Removing the announcement at the beginning of the day elimated all the anxiety that he normally feels about drills. I couldn’t be happier.

We had a fantastic lunch. Hammy and I ate together first and put together a car from his happy meal. Then Wolfie and I ate together and he invited two friends to join us. Watching him interact with his friends and seeing how proud he was of his accomplishment with the drills was wonderful.

Our school situation may not be perfect, but I am happy to have such good people working with Wolfie. All it takes is someone to take ownership and try to make a difference and today his teacher, his special ed coordinator, and his counselor really did a fantastic job.

All I can say is Thank You.

Following The Leader

“I want to quit REACH. I’m just a quitter and I’m not going back.” This is what Wolfie said to me when I picked him up from school. I knew something wasn’t right when I saw his face as he walked toward me after school. He had that look. The one where he was trying not to cry and not to smile. He was confused and embarrassed and he didn’t want to talk about it.

I just gave him a hug and told him we didn’t have to talk about it until he was ready. Poor guy. There is nothing that I dislike more than the idea that I send him off everyday to a place where he feels misunderstood the majority of the time. It is heartbreaking and frustrating to see such an able little boy with so much to offer struggling because he can’t conform socially.

Rules are hard. People constantly telling him what to do about trivial stuff clouds what is important. Wolfie’s greatest assets are his inventive ideas about systems and his knowledge about technology. His greatest asset socially is that he is outgoing and wants to engage with you. He wants to share his knowledge. How I wish there was a school that understood this, embraced it and encouraged it.

REACH is the gifted program at his school. He isn’t actually “in” the program, but is being allowed to audit because he is clearly gifted, but had a hard time proving it on the various tests he was given. I appreciate that he is being allowed to audit, but I find myself wondering if it is worth it.

It looks like, for Wolfie, REACH is more of the same on a more intense level for one day, three times in that day, once a week. There are a lot of transitions over the course of the day and he misses much of what happens in the regular classroom. The program is designed for kids who enjoy being challenged and thrive working and collaborating as a small group. The challenges are provided by the teacher and do not necessarily embody anything that Wolfie is interested in or motivated by.

This is hard for Wolfie. He has specific interests and would like nothing more than to explore those more to see where they lead. And why shouldn’t he? Why is our society so obsessed with group stuff? Albert Einstein wouldn’t have been the mathematician that he was if he was forced to participate in small group collaboration all the time. He probably holed up somewhere and immersed himself in his own little world of numbers and symbols. Was that expected? No, absolutely not. But aren’t we glad he did it?

I am not saying that this is what I want for Wolfie, but a little balance would be nice. Some acknowledgment on the part of the system that he doesn’t fit into their educational plan without it causing emotional pain and distress because he DOESN’T GET IT. The system needs to make room for him and his ideas. It needs to be soft and allow for his shape. He is driven by his ideas as we all are and he doesn’t come equipped with the social protocol filter that makes us all give a shit what someone else thinks. He has to learn that. And he is doing his part. He is trying.

I think the worst part of all of it is that he does have the capacity to know when someone isn’t happy with him. Today he didn’t feel that anyone was happy with him and he really didn’t know why.

He forgets how important it is to show the people around him that he is paying attention in the conventional way. He needs reminders of that because it doesn’t come naturally for him. If he can’t focus sitting in his chair then he gets up and moves around. He is still listening and in a lot of cases he hears better when he does this.

But it isn’t expected behavior to just get up in the middle of group work or when everyone is listening to the teacher from their seats. When he does this, it is distracting for the other students and for the teacher. Suddenly he is being reprimanded and he really doesn’t understand why. He wasn’t trying to be disruptive. He just needed to move a little. He feels misunderstood. He is constantly being asked to modify, to do it differently than his instincts tell him. No one is honoring WHO HE IS. What about what he needs to be successful?

“I want to quit REACH because it’s too hard. I don’t know what I did wrong today and Mrs. B raised her voice at me when she told me to go back to class.”  He started telling me about this again at bedtime. I questioned whether she really raised her voice. He said she did a little bit.

“It’s like she doesn’t understand that I have Asperger’s. And, anyway, I want to keep that private.” I reminded him that when we talk about his Asperger’s we are helping people understand why he does some of the things he does and that Asperger’s is just a difference. It isn’t anything to be embarrassed about.

We did a presentation last year to his first grade class about Asperger’s and what it means for him. Wolfie created the whole thing in Power Point and we went together and he presented it. The class loved it. They asked questions and made connections. It was one of the proudest days for him. From that point on, things changed for him in first grade. The kids made room for him and seemed to understand him better.

“I think we need to ask Mrs. N to forward that presentation to Mrs. B and Mrs. S so they can understand me better.” I love the way his mind works. Mrs. N is his first grade teacher, Mrs. B teaches REACH, and Mrs. S is is second grade teacher. I told him that we should create a new presentation or add on to the one we have and present it again. He liked my idea.

So the whole mess of an afternoon today was caused by Wolfie challenging Mrs. B and getting up from his seat to wander around the classroom. Maybe he was bored? Maybe he was uncomfortable in his chair? Maybe he listens better when he is walking? Either way, concessions should be made for different learning styles. Give him something to do that has meaning to him. Use what he has accomplished and build on it. His participation will be different from that of the other kids. That is a guarantee. 

He isn’t a follower of rules or of anyone just because you said. I have had to learn this over and over again about him. Really, this is true about everyone. No one likes to be told what to do. We are all unique individuals who have something to bring to the table. Wolfie’s is more complicated to get to, but if you are willing he will lead you there. You just have to be open to following.

New

On May 23, 2004 I woke up with contractions. I made Wolfie pancakes and tried to ignore the pain. I was not ready for labor. It wasn’t supposed to happen for another week and I wasn’t ready yet. I had no bag packed and Eliot’s parents were out of town. I drove to my parents house with Wolfie and we hung out there for awhile. Eliot was finishing up some things around the house and going to pick up a dresser from a friend. My Mom took one look at me and told me I was in labor. I didn’t believe it. It hit me like a ton of bricks around 5:00 why I had been denying that labor was, in fact ,here. Wolfie was playing with blocks on the floor and I was struck by his beauty and how much he depended on me. This would be the last time we would be a family of three. He was going to have to share. We all were. This was a time for bravery and I wasn’t sure I was up for the challenge.

All of those thoughts went completely out the window as soon as I looked into Hamilton’s eyes. He was a beautiful and healthy baby and I was in love immediately. Of course I had enough love for both. Why was it ever a question? Looking back on that day prior to his birth I understand that I was afraid. I didn’t know how it would all work out and that was terrifying. It was hard at first, but we found our groove and never looked back.

While my children were little, people would ask me what I was going to do with myself when my kids were both in school. I would think about what it would be like to “get my life back”. What it would feel like to have hours during the day to focus on something just for me. I had no idea that time would come so fast. Or that it would knock me off my feet the way it did.

The first day of school I had a bad case of butterflies all day long. Pretty normal I thought. After all, I had just dropped both of my babies off for the day. I cleaned and organized closets and grocery shopped on my own, while obsessively checking my phone for any missed calls. The second day was pretty similar to the first. Lots of cleaning and organizing and checking of my phone. I avoided writing and now I know why.

Yesterday I was sick of cleaning. We didn’t have a good morning before school and I had an enormous lump in my throat. I took apart some toys that had been taking up space in the basement and I contemplated working in the garden. I settled on a shower and then sat down at the computer. I intended to write about the morning, which I did, but I also kept wanting to interject little tidbits about the kids that really had no bearing on the story. The floodgates opened and I felt the pain I had been stuffing down all day with full force. I missed my kids. My identity for the last almost 8 years has been wrapped around these little boys of mine and now that they were gone for the day I really had no idea what to do with myself.

I wasn’t expecting this. At all. When my kids were home all day I tried to stay in the moment and realize that the little phases that we went in and out of wouldn’t last. Good or bad, they were all temporary and just part of them growing up and the beginning of a long lesson in letting go for me. I am here to tell you that it all went by way too fast for my liking. And I wonder, could I have embraced those times more? The answer is absolutely yes. Yesterday I found myself longing for someone to hold or someone to ask me a series of questions over and over until I thought I would explode.

I have never understood why people choose to have another baby at the precise moment their other children are in school all day. It seemed like such poor planning to me. I get it now. I completely understand the desire. I was immersed in it yesterday with a force so strong I thought it would pull me under. I had no idea I would feel this way. 

I am not saying that I want another baby exactly. I am not at all ready to make that leap. I have heard it said that you should do what you are passionate about. And, it turns out that what I am most passionate about are my children. I am okay with my role as Mom, first and foremost. Being Mom to my boys is the best thing I have ever done and while I miss them as babies, I am looking forward to enjoying them at this phase of life.

I no longer have complete control over what they do with their time. I cannot shield them from pain they will feel from the outside world and I cannot control what phrases they hear and who they spend time with at school. I have to place trust in the people educating them while I am not there and I have to trust them to ask for help when they need it. These are the years that shape who they will be as adults and I don’t want to screw it up. I feel an enormous amount of weight going into the choices that we make now for our boys. Choices are fluid, I know, but they seem so much more impactful now.

It was easy when they were babies to just love them up all the time. Feed them when they were hungry, change them, sing them to sleep and watch them learn new and exciting things. All under my guidance and love. I am giving over some of the job of guidance to school and I’m not sure about that. I think it is good to not be sure. It will keep me from becoming lazy in my quest for quality education and social interaction for them. My role is different, but the important stuff remains the same. Love, trust and understanding. This is what being a mother is all about. This is what I will do. It’s what I am passionate about.

This is the beginning of a new phase of mothering. Time to put my brave face on.

Not Enough Of Me To Go Around

This is day three of school and it didn’t start well. Yesterday’s fire drill left an impression on Wolfie so strong that at 6:30 this morning he was still maintaining that he would not be going to school.

I tried all the tricks I know. I tried distracting him with other conversation. I offered to make him his all-time favorite breakfast. And we talked at length about the reason for drills and what would happen if we didn’t practice for fires and other disasters. This seemed to make it worse, but he wouldn’t stop talking about it. All of this happened before Hammy woke up at 7:15.

Hammy started kindergarten this year. He goes all day and it has been a HUGE transition for both of us. I’ve missed him terribly these last few days and am so excited for pick up time. For the first time in awhile, I just can’t wait to play. I’ve had all day to get stuff done and I am eager to put my arms around both my boys and pile on the attention. The trouble is, no one is interested. At least not yet anyway.

Hammy has not been himself before or after school. He isn’t eating much and he is crabby and more quiet than usual. I remember this adjustment period when Wolfie first started kindergarten, but it was different. Hammy needs some extra love right now and I don’t have the time to give it when he needs it. I am always so worried about Wolfie and dealing with his response to things. I remember all the preparation that we did for Wolfie to start kindergarten and I didn’t do any of it for Hammy. It totally snuck up on me. I really wasn’t prepared for school to start so soon. It sounds crazy, I know. Most Moms I have talked to have been waiting for school to start so they could have a break, but I was savoring this summer. I was savoring it because of these kinds of mornings.

So, I was absorbed with sending an e-mail to Wolfie’s teachers when Hammy woke up. I was trying to get information about the tornado drill that Wolfie was absolutely certain was happening today. Hammy laid on the floor next to me while I finished the e-mail and then we went to the kitchen to make breakfast. I sat with him while he ate and we talked a little about school. He says he doesn’t have enough time to eat and that is why his lunchbox is coming home basically untouched. He told me he wanted to try to buy lunch today because it was pizza day.

By 8:00 Hammy was dressed and ready to go. Wolfie was still maintaining his “I’m not going to school today” mantra and getting more and more animated by the second. I started to panic. I was worried that any minute Hammy would join in on the refusals to go to school and we’d really be up a creek. I got Hammy involved in a project in the kitchen and went upstairs to talk to Wolfie.

Wolfie couldn’t keep his body from moving around. His legs were fidgeting and he was rolling around all over the floor. He was desperate for some kind of stimulation, but he refused to allow me to help him. When he gets like this there is no going back. It’s like watching a train wreck that could have been avoided if only the driver would have seen what you can see from your vantage point.

We have been talking a lot about trust. I have told Wolfie that part of understanding the stuff that is hard is having trust in those trying to teach. We talk a lot about what it means to love someone and to trust someone. And I tell him that I love him so much that I feel compelled to not allow him to make choices that hurt me. And I tell him that I feel compelled to teach him the things that are difficult even though it sometimes causes emotional pain. And I ask him to trust me.

Trust is hard for him.

I called my Dad and asked him to come get Hammy to take him to school. And then I called Wolfie’s special ed coordinator. She is awesome. I felt better just hearing her voice, and was hoping she couldn’t hear Wolfie throwing toys down the steps. She got on the phone with him after we talked and that was all it took. She reminded him that there was an all school assembly scheduled for today and she reassured him that there would be no tornado drill. He agreed to get in the car almost immediately. He got his shoes on and we were out the door. But not before making a last minute lunch for Hammy who had changed his mind about the pizza and asking my Dad to back out of the driveway before Wolfie saw that he was there.  

It is hard to see when someone else is more effective at getting Wolfie out of his funk. I know it is because she isn’t his mother that he was so quick to change his tune and I am happy that it all worked out. It makes me sad though because I try so hard to help him, and sometimes it seems fruitless. I have to remember my own words about love and trust.

I walked Hammy down to his classroom and kissed him goodbye. He had tears in his eyes and we talked about the story The Kissing Hand. I gave him a kiss on his hand and he pressed it to his cheek and walked into class. I know that other parents know the pain of loving and letting your children go. It is so hard. As I walked out of school, I thought about how much of the morning was spent managing Wolfie and how that can’t be the way it is. Finding the balance that will work for this new phase is one that I didn’t think about until now. I am happy that the weekend is here so that we can relax and prepare for a fresh start next week.

What’s In A Name?

I have been thinking a lot about Wolfie’s diagnosis and what it means to have one. It seems that more and more people on the spectrum are being diagnosed with other things on top of the ASD. They call this co-morbidity. Why must everything surrounding ASD’s be so doom and gloom?  I don’t see his Asperger’s as an illness at all. I see it as a difference in how his brain works and how he makes connections to his ideas and his surroundings.

I have no doubt that, given some of the challenges he faces on a day to day basis, seeking a doctors opinion or care with any regularity about those things would result in a prescription. It would also result in some other diagnosis on top of the Aspergers. There are symptoms of his Asperger’s (and I am speaking only of my son, not anyone else who may have Asperger’s) that sometimes look like Oppositional Defiance Disorder (ODD) or Attention Deficit Disorder (ADD). But these symptoms are not present all of the time.

The ODD -like symptoms are present right now with respect to rules he is asked to follow that he sees no logical reason to follow. He is seven and he is desperate to be independent, yet he struggles with understanding the social expectations that are present everywhere. Even the ones he understands he does with an unconventional flair. I’m okay with that. What is interesting to me is the way he has catagorized the heirarchy of whose rules he has to follow and whose rules might be flexible.

He has developed a habit of saying “nope” to me pretty much anytime I ask him to do something like brush his teeth or get dressed or really anything he doesn’t feel like doing, but is expected to do. When I approach this with a choice like “if you don’t brush your teeth you will get cavities and then you won’t be allowed to have any sugar because your teeth will hurt”, usually results in a response from him like ,”Oh, fine. I’ll do it one minute.” This is a good time for me to tell him thanks for seeing my side of things and next time maybe just ask me for another minute instead of refusing.

The trouble is, I don’t always respond that way, and neither will the rest of society. But interestingly, he doesn’t respond that way unless he knows the person really well. He would never respond that way to a person of real authority like a police officer or pricipal of a school. He would respond that way to a teacher though. Why? Because he says the police officer and the principal are the boss. In his mind, the police are the boss of me and the pricipal is the boss of the teacher.

His ADD-like symptoms are present when he is bored. It’s as simple as that. At school, he is completely unsatisfied with most of the classroom stuff. Worksheet and writing exercises are so mundane. He has been writing his name clearly since age two and reading since age three so you can see why at age seven practicing writing his letters over and over again might result in not wanting to do it or moving around a lot. At home, I see these symptoms when he is looking for something to do and can’t quite figure out what it is that he wants. I have felt that way too. It’s called boredom.

I am going on and on about this for a few reasons. We have now been declined twice for health insurance for my son. Why? Because he has Asperger’s. How sad that this brain difference, that for my son poses no health risk, is being considered worthy of recoiling  from completely. Maybe I am over simplifying when I suggest that this is one of the biggest forms of social protocol gone wrong that I have ever seen. To deny people coverage because they pose a risk of some kind? Why have insurance then? To look cool? To be able to say you have it?

To make matters worse, or better, depending on your situation, if you join a “group” it’s suddenly no big deal that you have a kid on the spectrum. I’m sure there is some explanation for this, but it seems like a load of B.S. to me. Thankfully for our family, my husband is self-employed and in our state you only need two employees to qualify as a group. I write this with pride as the new “office manager”.  My heart goes out to those families who for whatever reason don’t have this as an option.

All of this could be avoided if Asperger’s weren’t considered a pathology or disorder. Some of our societies greatest inventors and achievers are believed to have had Asperger’s. The stigma of illness or disorder is doing these great people an incredible disservice. For society to hold people with Asperger’s on the one hand as if they were sick and needed to be cured and on the other hand brilliant for inventing things that have made life better and a hell of a lot more interesting is mind boggling to me.

I hold out hope that this will change through the education and advocacy being done on the part of my son and people with Asperger’s everywhere.

When Life Gives You Lemons…

This morning Wolfie woke at the crack of dawn to the sound of thunder. He doesn’t like thunder. We got out of bed and found his ipod and he listened to a Judy Blume book while I exercised. Even though it was early, it was nice to be awake and moving. I have been neglecting my exercise over the last several weeks. What can I say? It’s summer and the routine has kind of gone out the window.

Over the last week the anxiety in our house has been at a high level with school looming. Wolfie is excited, but not really, if that makes sense. There is so much to be said about back to school, but that is for another story.

After my workout I was reminded that today was the day he would be going back to school shopping with Grandma. He has been looking forward to this for a week. After calling to talk with Grandma about the plan and having some blueberry pancakes, he went up to change. He told me he was going to wear something fancy.

He is enjoying dressing up very much, which I get an enormous kick out of. I try not to encourage it because all of his nice things are getting ruined, but I have a hard time denying him. His face just lights up when he is in his fancy tuxedo pants, his button down shirt, and his zip tie. He radiates happiness and confidence when he is dressed this way.

Hammy and I did some “nature” while Wolfie was gone. This consists mainly of walking through the back yard, picking wild strawberries and trying to catch flying bugs. I love my time with him and I felt a pang of sadness today knowing that he would be starting kindergarten next week. Where has the time gone?

Wolfie came home very proud, with an armload of packages, and announced he had a surprise for me. He couldn’t have smiled bigger if he tried. I agreed to wait for him downstairs while he went upstairs with Grandma to change into his surprise.

I decided to check the mail while he was preparing. When I saw that  there was something from Anthem Blue Cross, my heart skipped a beat. We had just applied for health coverage and I knew this would be the letter announcing our coverage. I’m not sure why I was nervous. Probably because my husband’s Cobra plan expired the first of the month and if we didn’t get this coverage I knew it would not be good.

I opened it and saw that Hammy was accepted. Eliot is accepted. I am accepted. Wolfie is denied.

What???

Why??

The reason was “confidential health information from phone interview on aug. 6th and claims history.”

Wolfie has never been medicated nor has he ever been sick with anything that required extended care or medication. I was completely dumbfounded. I still am. I feel like I’ve been punched in the stomach.

Wolfie has Asperger’s Syndrome. He has this diagnosis not for medical purposes, but because the school demanded a diagnosis before they would provide him with an IEP and the services that he needs. Last year we had to choose between protecting him medically and advocating for him educationally. The crappy part is that I didn’t know I was making that choice. I really thought, stupidly, that our choice not to medicate him and pay for most of his therapy out of pocket would protect us from this discrimination with the health insurance companies. I thought they looked at each individual on a case by case basis. Again, stupid.

I could go on and on about why this is not right. I could list all the reasons why it isn’t fair. I could spend hours talking about how even though he has the medical diagnosis and the IEP, society is still failing him. He still doesn’t fit in and his school experience is not up to par. And now, as the extra added bonus he is being denied health coverage.

I know that this is but one bump on the road called raising kids, and I know that somehow this will work out. It feels good to know that it will work out. Even if I don’t have the slightest idea how.

I look at him now, as he is putting on his surprise again (it is a suit) to show his Nonnie and Grandad, and I am so proud. I am proud of him because I think he is brave to go out into the world everyday, even though it is hard, and smile and make connections with people he meets along the way. And I am proud that he has inspired me and many others to understand him. 

But mostly I am proud to be his Mom.

The Grass Is Always Greener

Sometimes I feel like scooping up my family and going someplace remote where we can live without all the stimulus and social pressure that living in an American suburb or city provides. I truly believe that Wolfie belongs near the water. He loves the water and is drawn to it whenever he is near it. There are so many logistical and practical reasons for not relocating. Our families are here, our network, our support. Everything we have ever done is here.

I know that for most people the practical choice is the best one. I’m not so sure that is the case for my little family. We are a family filled with impracticality and unconvention. I feel like so much of my days are spent trying to make us all fit inside this shape that was predesigned and is unmoving. This is what I dislike about the puzzle piece symbol for Autism. Yeah, people on the spectrum have a difference about them that is hard to figure out and maybe that is all that is meant by the symbol. But, I can’t shake this feeling that most non-spectrum folks would like to see ASD cured and that there is a sadness associated with ASD. Or that people on the spectrum are sick. Or that they will never fit.

The sadness I feel mostly is from the rejection that my son feels on a regular basis from his peers and many adults. It also stems from my own pressure on him to conform. This feels like such a double standard. I want him to be who he is and for that to be comfortable for him. When I really examine it, I think he is comfortable with himself. He’s not comfortable with everyone else’s view of him and our ideas. And we aren’t comfortable with him.  As his parent, it is so hard to strike a balance with my own feelings and desires for him, his feelings and desires and those of the rest of society.

It is this banter that goes on in my head everyday that makes me realize that I need to create more space for him. My practicality will win on the not moving thing. But there has to be some compromise between what we expect from him and what he expects from us.  And his strengths need to be put to good use regularly. In my desperation to create tools to help him do what is expected, I sometimes neglect to nurture the parts of him that make him shine and show off the beautifully, unique person he is.

I am not beating myself up, but rather taking note that the balance is off. I remember when the summer first began I had these wonderful ideas of how we would spend our days. Some of those ideas we have made reality and some have gone by the way-side.

We found a way to bring the water to Wolfie. He and my Dad created a wonderful back yard pond and waterfall for him to play with and enjoy. He uses different objects to make the waterfall look different and then swings while he studies the pattern of the water falling. Watching him do this is very peaceful. I can see the happy-go-lucky little guy I know and love so much while he is tinkering with the water. 

Dreaming about life somewhere else helps me be creative with the life we have here and develop new ideas and strategies for whatever obstacles are present.  I know that uprooting our family would be more disruptive than anything else because we have relationships here that are irreplaceable. I must continue to remember that the challenges we face with Asperger’s will be with us no matter where we are and the best thing we can do for ourselves is to make happiness right here at home.

Let It Ride

I was reminded today, as I am very often, that life for Wolfie must feel like one correction after another. A pile-on of reminders that he is doing things differently, and not in a good way.

“Hey buddy, can you look at me for a second?” I asked him this while we were waiting in line for the Scooby Doo ride at Six Flags. He gave me no response. I asked him again to look at me. He yelled at me to get away from him. I tried and tried to keep my voice quiet and let him know that he wasn’t in trouble and that I wasn’t angry with him.

I was painfully aware that he was standing too close to the woman in front of us. She and her family kept looking back at him and then at me because he was standing in their family space, totally unaware. For me, this was hard to watch and not want to interject my own feelings about the situation. On the one hand, I wanted to let him alone. He wasn’t hurting anyone. But, I could tell that the woman was uncomfortable. At least I think she was.

This is just one of many examples of how his limited social awareness creates discomfort for those around him and then for himself. It’s like a vicious cycle. He does something out of the ordinary, people notice, we try to help him to be more conventional, he becomes angry, he becomes sad, we talk it out,and then he’s happy and loving. Repeat.

I am juggling a lot of feelings here. I am sad for him because I hate to see him in pain and his life is painful right now. He feels let down by society and I get why. We are asking him to do things that don’t feel right to him and he has no real reason to comply because none of it makes sense to him. Why should that lady care that he is standing a half an inch away from her body? 

I am happy for him because I adore who he is and get the biggest kick out of his quirky imagination. He is genuinely loving and so sweet. He makes everyone around him smile because of his unique way. He draws people in and that’s good.

I am afraid for him because he is angry. When I ask him why he is so angry he says it’s because he’s tired of being wrong. When I ask him why he becomes violent he says so he can have power.

He has some pretty sophisticated ideas about the world and yet, there is so much he doesn’t understand. This fact alone, makes things complicated.

He had an enormous meltdown in the parking lot of Six Flags as we were leaving. It was a response to all the stimuli he encountered while we were at the park and he was clearly overwhelmed. By the time I saw that it was coming there was no way to diffuse it. We had to ride it out and it was no fun at all. We were hot and sweaty to begin with and the giant explosion of emotion made it feel ten thousand degrees hotter.

It occurs to me as I write this that Wolfie’s meltdowns are not unlike the release a person feels from riding a thrill ride. You scream and scream, and you are frightened and exhilarated and there is a huge array of emotion. After the ride, there is this sense of calm and newness almost. It’s like when you have been riding on a boat or an airplane for a long time and then you have to walk a straight line. You know you can do it, but your body keeps feeling the motion of the boat or plane. Eventually things even out and you don’t walk crooked and things go back to normal. 

As we pulled into the closest drive thru I felt relieved and very blessed to have the sisters that I do. They handled the days events with a great attitude, even though it was challenging at times, and I never felt  judged by them. So, my sis who was driving ordered five enormous ice waters, some fries and a few sandwiches and all was well for the drive home.

I sat next to him in the back seat and was struck by how quickly he recovered. He just kept commenting on how nice the ice water tasted and how much he loved the french fries in his now hoarse voice. It was as though nothing had happened. He was himself, happy again and I wouldn’t want it any other way.