Tuesday, April 22, 2008

My son and Asperger Syndrome

This is my son, Trevor. Trev will be 15 years old in July, he's currently in the 9th grade at the same high school that I graduated from, many years ago (OK, it wasn't really THAT many years ago, at least it doesn't FEEL like it - is 18 years that long? HOLY COW, I'm going to have to go to a TWENTIETH HIGH SCHOOL REUNION in a couple years???)...

OK - I had to go lay down for a minute and recover from realizing how old I am. Now back to Trevor - Trevor is an awesome kid. He has always been a unique mix of being mature for his age, and being immature for his age. For example, he gets along much better with adults than with other kids,and he can hold a very intelligent conversation with just about any adult - but he also still enjoys activities that most teenagers have outgrown, like Legos and building things. Trevor has always had a hard time with his peers, he always seemed to have poor social skills and a hard time developing friendships. When he was in elementary school, he would meet a new friend at school and come home talking about his "best friend John" - I would wonder how someone he just met that day could be his best friend, but he was young and so happy to have a friend, I chalked it up to eagerness.

We had a lot of problems with school from the time Trevor was in the 1st grade in a small town school. It began with speech problems, which he went to speech therapy for. Trevor was picked on a lot for his speech, and later for just about anything, and I was called to the school often for various reasons - Trev would get migraines and need to come home, he would break down crying when someone picked on him and would be inconsolable. By the time we moved back to the city where I was born and raised, Trevor was entering the 6th grade. His grades were always borderline passing, but he scored high on standardized testing (MAT 8's, MCAS, etc.). We had already been to numerous doctors, counselors, psychologists. We had been through IEP's, psychological exams, and tried out a few medications. They thought he might have ADD, ADHD, an emotional or social disorder, or possibly be suffering from clinical depression. We had one psychologist who after several sessions told me that "Trevor is a good kid." How many years of medical school did it take you to come up with that diagnosis, Einstein? Are you kidding me? I KNOW my son is a good kid! What I couldn't figure out was why no other KIDS seemed to know that. As long as I kept Trevor with me and other adults, things were usually fine. Even cookouts and family events would turn sour if there were other kids there. It got to feeling like Trevor was LOOKING for conflict, and it became exhausting dealing with the effects of the drama. I couldn't understand it and it was breaking my heart.

Fast-forward to middle school - what an absolute nightmare. Middle school is hard enough for kids without problems. For kids who have a hard time with social skills and their peers, middle school is downright awful. The two years that Trev spent there were just terrible - I gave him credit for even getting up and going back to that place every day. If I were him, I don't think I could have done it. Every single day was another day of Hell for him. He was constantly hit, pushed, shoved, had things thrown at him. When he'd go to class and sit down, other kids would push their chairs away from him while doing the "ewwww.... Trevor" thing. It was all I could do not to bring my child to learn martial arts and instruct him to whoop every single one of their mean, pathetic, heartless butts. Hell, it was all I could do not to march up there myself and beat the crap out of these brats. What I did instead was beg the school to help - why are kids allowed to behave this way, to treat others like that? I was told that Trevor over-reacted, he needed to learn to ignore the bullies, etc. the school bus was another nightmare, every single day I would hear stories about the kids on the bus being mean to him, tripping him as he walked by, etc. We'd try to talk to the school, who would try to blame Trevor and tell us that they had cameras - but when we asked to see the video from the cameras, suddenly the cameras weren't working that day, or the videos were corrupted, there was nothing to see. So we tried yet another counselor and asked him, "What should Trevor do?" His suggestion - to chuck the middle finger at the kids on the bus who were mean to him as he walked away. BAD IDEA for a kid who is already a target. Let's just say that counselor didn't last long.

In the meantime, I'm reading stories about school shootings and violence and I'm saddened and shocked like the rest of the world every time it happens. Only I have a different perspective - I'm the one wondering what the kid with the gun went through for the past 10 years of his life. Was he picked on relentlessly? Did his parents and/or the school ignore his cries for help when he was younger? Did he learn that no one was going to help him, so he figured out a way to help himself? Were the poor kids he shot just innocent victims who happened to be in his way when he had finally had enough, or were they the kids who did the tormenting, thinking it was just funny to pick on some kid who was different and not realizing that they were ruining a person's LIFE? Don't get me wrong, shootings are not justified no matter what the circumstances - but you have to at least wonder what kind of emotional trauma can cause someone to do that, to give up their future because of how badly their past and present hurt them. I vowed every time I read or heard a similar story that my child would never feel abandoned and alone, and that I would fight for him to be treated fairly, even if I drove the school and their administrators absolutely crazy. And I don't know if it's luck or good parenting, but my kids and I, we talk. My kids tell me things that sometimes make me want to stick my fingers in my ears and go "La-la-la-la-la-la-la" really loud, but I suck it up and I listen and we talk, we figure stuff out together. I love being a mom, and I love my kids more than life itself.

When Trevor was going to high school this past September, we were thrilled when he was chosen in a random lottery to attend a local charter school. Our elation was short-lived - one particular little girl found Trevor to be a target and said some pretty disgusting things to him (let's just say they involved telling Trevor to suck a certain part of anatomy that she most likely does not even possess, being that she is a female), along with comments about his mother, me, who she had never met or even seen. Trevor has learned to put up with quite a bit, but he has never been able to ignore anything to do with his mom - he loves me to pieces and even gets mad at his sister and his nana if he thinks they have done or said something to hurt me. So he was NOT exactly accepting of this particular little cretin's remarks. It became a running argument between the 2 kids, to the point that other kids would encourage Trevor to ignore this girl, and the girls' friends would make comments to Trevor in the hallway when she wasn't even around. The school got involved, and I had a couple of conversations with them during September and October, nothing big. Trevor seemed to be doing pretty well, actually.

Towards the end of October, Jeremy and I were called to the school, where we were confronted, in a giant meeting room, with the school principal, assistant principal, superintendent, a couple teachers and the school's psychologist. Apparently, Trevor had been told that the school psychologist was a safe person for him to talk to, and that he could go to her when he needed to vent. When you give Trev an opening like that, he takes full advantage of it - he NEEDS a safe person to be able to vent to during the day when things happen to him - things that might seem little to others, but are a big deal to him. So he did that, and she turned around and used everything he told her in confidence against him. I was mortified - Trevor and I had a discussion the previous summer about using journals to vent your feelings. Trevor had a group of kids in the neighborhood who delighted in tormenting him, they'd make snide comments out their windows when he rode his bike by their house, they'd make videos of themselves making fake bombs and posting them on You Tube while saying "we're going to throw this at Trevor's house" etc. So Trevor had said to me, "that's a good idea, I can keep a journal of all those kids names and the things they do to me." Now I know my son, and he's thinking "PROOF! This will be proof of the mean things they do to me" - because he's just the type of kid that ALWAYS ends up getting blamed or looking guilty, even when he is not (and trust me, he's a good kid but he's not an ANGEL, let's be realistic!). I immediately said "Trev, a list of kids' names is NOT a good idea" and I explained the Columbine shootings to him and how a list can look bad, and people get the wrong impression. I encouraged him to use a journal more to write out his feelings, how he felt when kids said and did those things to him. Well, this school psychologist apparently mentioned journal-writing to Trevor, so he repeated our conversation to her. She took this as a threat and put it in writing that "Trevor has talked about making a list of kids who he doesn't like, and that his mother told him that a list would not be smart because of things like Columbine. Trevor said he doesn't need a list, he knows the kids' names and has the list in his head." They told us at that time that we could either withdraw Trevor from the school or they would expel him. They actually suggested that I should hospitalize or institutionalize my son. I sat there with my jaw dropped open, barely able to speak. THIS was the school that we expected to make a positive difference in Trevor's life?

I was beside myself and had no choice but to withdraw Trev from the school and enroll him back up at the local high school. The first day there, I was walking down the halls with him and a teacher when I heard kids walking by saying "Oh, look, there's Trevor" in that tone of voice that you just know doesn't mean "oh good, there's Trevor" but more like "Woo hoo there's Trevor, can't wait to see him when no teachers are around." I instantly stopped in the hallway, and Trevor turned to me and said "Mom, don't worry about it, just keep walking, it's no big deal." I don't think I have EVER been more proud of my son than I was at that moment. I was this close (put your finger and thumb about 1/2 inch apart) from running down the hall and taking that kid and putting him right over my knee for the ass-whooping of his life-time. Ironically, Trevor saved that kid's behind right then and there. Funny how things work out like that, isn't it?

So we got Trevor signed up at his new school and he was put into a class called STEP, which was for kids with "emotional and behavioral disorders" - mainly because he could not get through a day in the "regular" classes without either having an emotional outburst (crying or yelling at another child, usually for doing something annoying but not really MEAN or violent, something like throwing a pencil at his back), and he was kind of just getting by. He joined the Air Force ROTC program, which he LOVES and has absolutely thrived in from day one. I was a bit surprised, mostly because of the rules and how strict it is, I wasn't sure if Trevor would clash with his instructors, military people. He has very strong opinions on everything from religion to politics, and he's not afraid to share those opinions with ANYONE. LOL But he fit right in to this group, something that Trev has a hard time doing (fitting in), and what I learned later on brought it all back full circle to make perfect sense (keep reading).

During all of this, I am still searching for something to help explain my son to me. I just don't "get" him sometimes, and it's frustrating and depressing. My sister mentions to me one day that the summer before, she worked at a summer camp and there was a kid there who reminded her a lot of Trevor, and that he had something called Asperger's Syndrome. I looked it up on the Internet and I almost fell off of my chair. I couldn't BELIEVE it - they were describing my child! Asperger's is on the autism spectrum, so I immediately started making phone calls to different autism agencies in and around my area (Worcester, MA) and eventually I connected with the AANE, the Asperger's Association of New England. I was put in touch with a psychiatrist who specializes in Asperger's, and after one visit with him, Trevor had a diagnosis of what is actually called Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), which is also on the autism spectrum, very similar to Asperger's.

This was in December of 2007, and things have happened very quickly since then. I have learned WHY Trevor is the way he is, and I am learning to help him with the things he has problems with. Trevor himself has grown up a lot this year, and him and I have both learned to laugh at things that frustrated us both before - one of the ways that PDD-NOS affects Trevor is rigidity and strict rule-following for everyone, so if he notices that things are not "fair" (in his eyes or perception), then he cannot move on. He focuses on that and can't get over it. In school, it usually happens like this - a child walks by and hits Trevor on the back with his hand. Trevor tells someone (a teacher) and the person tells him to ignore it. Trevor cannot ignore it, and can't concentrate on anything else. When the same kid walks by 2 hours later, Trevor will hit HIM on the back, and then get in trouble. That's it, at that point they have lost him for the entire day - now he's done nothing for 2 hours because he's been waiting for that kid to walk by so he could "get back at him" since the teacher didn't help or do anything about it. Once he feels he got even, and HE gets in trouble, he becomes a basket-case, not understanding why he is in trouble for doing the same thing that the kid did to him to begin with and that kid did NOT get in trouble. This is a very much watered-down version for this blog, but this has been our LIVES for over 10 years now. Taken directly from the AANE website, here is a list of some of the things that people with Asperger Syndrome usually experience (I have italicized and bolded the ones I see in Trev):
  • Difficulty knowing what to say or how to behave in social situations. Many have a tendency to say the “wrong thing.” They may appear awkward or rude, and unintentionally upset others.
  • Trouble with “theory of mind,” that is, trouble perceiving the intentions or emotions of other people, due to a tendency to ignore or misinterpret such cues as facial expression, body language, and vocal intonation.
  • Slower than average auditory, visual, or intellectual processing, which can contribute to difficulties keeping up in a range of social settings—a class, a soccer game, a party.
  • Challenges with “executive functioning,” that is, organizing, initiating, analyzing, prioritizing, and completing tasks.
  • A tendency to focus on the details of a given situation and miss the big picture.
  • Intense, narrow, time-consuming personal interest(s) — sometimes eccentric in nature — that may result in social isolation, or interfere with the completion of everyday tasks. (On the other hand, some interests can lead to social connection and even careers. For example, there are children and adults with an encyclopedic knowledge of vacuum cleaners.)
  • Inflexibility and resistance to change. Change may trigger anxiety, while familiar objects, settings, and routines offer reassurance. One result is difficulty transitioning from one activity to another: from one class to another, from work time to lunch, from talking to listening. Moving to a new school, new town, or new social role can be an enormous challenge.
  • Feeling somehow different and disconnected from the rest of the world and not “fitting in”—sometimes called “wrong planet” syndrome.
  • Extreme sensitivity—or relative insensitivity—to sights, sounds, smells, tastes, or textures. Many people outgrow these sensory issues at least to some extent as they mature.
  • Vulnerability to stress, sometimes escalating to psychological or emotional problems including low self-esteem, depression, anxiety, and obsessive-compulsive behaviors.

Now that you've read those things, can you imagine going through 7 years of elementary school and 2 years of middle school with all of those issues, and no one helping you work on them, but telling you to ignore everything that bothers you and to "get over it." This is Trevor, he cannot change who he is - yelling at him for being the way he is can be compared to yelling at a blind person for not being able to see. Telling Trevor that he has to change is like telling a tall person that they must shrink, they cannot go through life that tall. It's ridiculous to expect that, and I cannot even put into words what relief I felt to FINALLY have a diagnosis that made sense, that FIT. NOW we could start helping Trevor to deal with the issues and figure out ways to make life (school, to start with) a little easier for him. He was moved into a program at school called COAST, for kids on the autism spectrum, a few weeks ago, and he has been doing pretty well so far. He was needing an ibuprofen and an anti-anxiety pill every single day before school previously - he has not asked for either since he was moved to this program.

Trevor has been hooked up with a WONDERFUL counselor who we see every other week, and who has really helped me to understand Trevor better. I have learned not get mad at things that Trevor cannot help. He was always a kid with a heart of gold, I didn't understand why certain things would make him mad - like the way the bus stops were not spaced evenly (I'm not kidding you) or why it would bother him to see kids running when they were supposed to be walking - I used to get frustrated with him and argue with him, "Trevor, why do you CARE what they do?" He was constantly threatening to sue every single person, company, or city that did something he didn't agree with (including the school). Now, when these conversations begin and I can see Trev getting worked up about some non-issue like evenly spaced bus stops, I make light of it without making fun of HIM - I'll say "Should we hire a lawyer?" and he'll giggle - or I'll say "WELL! When you grow up, you can make it your mission in life to be sure that all bus stops are evenly spaced!" and he will look at me like I'm crazy and start laughing, and then we laugh together, which is the best thing in the world.

Now I feel 100 times more qualified to talk about what is best for Trevor with the school, with my family, with friends. It's challenging and it's something that we will have to deal with for the rest of his life, and something that we'll have to teach him to deal with once he's an adult. I hope that we can help him learn to overcome some of the challenges of Asperger's, but I also wouldn't want to change Trevor even if we could. Asperger's makes him ..... well, it makes him TREVOR. The only real regret I have is that we didn't figure this out sooner. I wish we had this diagnosis back when he was 4 or 5 and we could have begun school knowing these things and maybe life would have been easier for him- but at the same time, I do believe that everything happens for a reason, even if that reason isn't apparent for a long time. But who wouldn't wish that life could have been easier for, and kinder to, their child? I think the hardest part now is getting people to be accepting and understanding, and to change their reactions to the things he says and does, especially my family. My first instinct is to just shield him from life, to keep him home with me where I know he's safe and loved and understood. But I know that in the long run, that would be the worst thing to do. He needs to learn social skills, which both the school and the therapist are working on, he needs to learn to deal with conflict appropriately, even within the family, and I have to accept that there is going to come a day when he will be on his own, as much as that thought terrifies me now. I wish so much that I could keep him safe, protect him, for the rest of his life. But I'm confident that I'm doing what I can NOW to teach him to do exactly that, and I guess ultimately that is the job that parents have, anyway, isn't it? Whether our kids grow up without any issues or have lots of them, eventually they all do grow up and live their own lives.

There is so much more that I can say about Trevor, but this post is already ridiculously long - however, I want to end it on a positive note. Asperger's is not all about the "bad stuff", there are a lot of positive aspects that Asperger's brings out, too - his ability to interact fabulously with adults (it's kids and his peers that he has a hard time with), his intelligence (he's really smart), his focus on completing a task that he's interested in (building incredible Lego creations), etc. The last thing is his determination - I am in awe of his determination and his willingness to plod on regardless of the circumstances. I am extremely proud of this kid and I would not change a thing about him.

April is Autism Awareness Month - my hope by posting this blog is that you'll think twice before making assumptions, in any given situation. For most of Trevor's life, people "assumed" that he was a cry-baby, that he was acting out for attention, that he was jealous of his near-perfect sister (in his eyes, anyway) - I am even guilty of assuming a lot of those things for a very long time. I now feel that I am Trevor's best advocate and I fully intend to play this role as long as he needs me to, with whoever he needs me to!


  1. Hi Jenn, I am so glad you are raising awareness this way - you go girl! I know you have been through so much trying to get Trevor the school experience he deserves and I hope the rest of his HS years are wonderful. I'll catch you when we get home from Vegas and the wedding! hugs, Linda

  2. Oh, Jenn, my heart goes out to you and Trevor! I have a dear friend whose daughter has to deal with this as well. I am thankful that you are a strong advocate for him, and I wish that the charter school could face repercussions for NOT catching on! (That's the angry part of me talking--I know it won't happen. :-() I hope that his life gets easier as he works through this!