Feeling Excluded

excludedNOTE: I wrote this post this past weekend with the event fresh in my mind.  I originally wasn’t sure if I was going to post this, but it felt good to get it all out.  After a few days, though, this still bugged me and I decided that I needed to publish this.  Hitting publish isn’t going to help my child, but it might get people thinking about how children with special needs can be excluded from events.  I’d also like to thank JSL for loaning me his rubber duck collection for a quick photo shoot (even if he was asleep when I borrowed them).

Today, my heart broke.

As many of you know, I was bullied as a kid.  (If you didn’t know this, read My Bullied History to catch up.  The rest of us will wait.  Done?  Ok.)  Anyway, due to bullying and Asperger’s (undiagnosed and definitely not known about when I was in school), I always felt like the outsider.  I longed to communicate with people, to have friends like the other kids had, and (once I was in high school) to maybe even have a girlfriend like many of my schoolmates had.  Unfortunately, I always felt like everyone was judging me.  Every word I said, I immediately wished I could rewind and delete from existence.  Friends?  I had one.  He was a great friend (still is), but I wanted a huge social network of friends.  Not a ton of acquaintances and one good friend.  As for the girlfriend front?  Not even close.  (Those embarrassing details I’ll save for another post – and trust me, they are incredibly, scar-you-for-life embarrassing!)

Anyway, when NHL was born, I knew many things I wanted to provide for him in life.  Love, food, shelter, an encyclopedic knowledge of Star Wars, a love of Looney Tunes.  You know, the essentials.  But there was one thing I didn’t want him to ever experience:  Bullying or feeling left out.  When we got his Asperger’s diagnosis, it broke my heart.  Not because we knew he had Asperger’s.  That was fantastic knowledge that turned helping him from "stumbling in the dark" to "action plan that would make Hannibal from the A-Team proud."  Instead, it was the actual report.  There were lines about kids rolling their eyes at NHL.  Girls moving their chairs away from him.  In short, kids were looking at him as if he were a pariah and an outsider.  NHL was blissfully unaware of all of this, but we knew it was only a matter of time before it struck him.

Today, my heart broke again.

We went to temple like we do on many Saturdays.  NHL is getting ready for his Bar Mitzvah and it’s important for him to be exposed to the whole Shabbat Service experience as much as possible.  Pulling in, I noticed a lot of cars in the driveway.  This is odd as our Temple isn’t usually packed.  Oh well, I figured there must me some event or celebration going on.  I even looked forward to it because these events usually mean a good Kiddush afterwards.  (For you non-Jews out there: After services, there’s a "Kiddush" where we all eat and socialize.  It’s a practically a contractual obligation in Judaism that any celebration needs to be accompanied by a metric ton of food.  And, yes, I’m shameless about motivating NHL to go to temple via promises of attending the Kiddush afterwards.)

As we walked in, we realized that it was a Bar Mitzvah.  Not only that, but it was the Bar Mitzvah of someone in his class.  Someone who hadn’t invited NHL to his Bar Mitzvah.

I didn’t feel weird walking in on this because Bar Mitzvahs are public affairs.  Yes, you invite family and friends, but anyone from the temple can attend the service and Kiddush afterwards.  So we would attend as "members of the Temple", not as "invited friends of the Bar Mitzvah boy."  No biggie.

As we sat down, I noticed a huge group of kids in the crowd.  Again, not a big warning sign.  It’s the boy’s Bar Mitzvah and many invite every friend they have from school.  I didn’t recognize most of the faces so I figured they were from his regular school.  We did notice some kids from his Hebrew school but it’s not a requirement that you invite EVERYONE.  We certainly hadn’t been planning on inviting every kid in NHL’s Hebrew School class to his Bar Mitzvah.  So we stayed until services were almost over.

That’s when it happened.

The rabbi invited all of the Bar Mitzvah boy’s friends and family up on the stage.  NHL started to rise, but I stopped him.  This was for the people invited to his Bar Mitzvah, I reminded him.  We weren’t invited to be there.  We were just there as temple members, not as his friends.  So NHL got the "wonderful" experience of seeing all these kids get up on the bimah (the stage/platform where the service is led from) while he was excluded.  Did I mention that there were a lot of kids?  It took a good three minutes for all of them to get to the stage and get up the stairs.  When it was all done, the Bar Mitzvah boy was surrounded by friends/family and NHL was alone.  (Yes, I was there but I know enough to know that your dad never counts in these mental equations.)

NHL excused himself to go to the bathroom.  There were only three prayers to go in the service, so I stayed while I let him go.  I couldn’t pray, though.  My insides were wracked with nerves.  Was he really that upset?  (A combination of NHL not being good at showing his true emotions and me not being good at – and doubting my ability at – reading emotions didn’t help.)  Should I race after him?  Should I stay here in case he comes back?  Will he be coming back?  I was paralyzed.

The second services ended, I raced out of the room.  Thankfully, I can be single-minded to the point of ignoring social protocols at times.  I didn’t get caught up in any hand-shaking or "how is your family doing" moments.  I just barreled out of there and headed right to the bathroom.  NHL wasn’t there.  My next guess was that he finished up and went right for where Kiddush would be held.  I went down the stairs, dodging people who had caught up to me after my brief check-the-bathroom side trip.  I was a man on a mission and nobody was going to stand in my way of making sure NHL was alright.

Sure enough, NHL was there already saving a table.  I asked him if he was alright and he assured me that he was.  He was upset only that I prevented him from immediately digging into the food that was laid out.  I felt that social protocol demanded that we at least wait for more people to arrive instead of just piling on food and stuffing our faces.  (Not to say that piling on food and stuffing faces didn’t happen, but it happened when more people were doing the same.)

NHL seems fine now, but again there’s that whole hiding his feelings thing.  He seems to have inherited a really bad habit I have.  He takes his most horrible feelings and covers it over with an "I’m fine" attitude.  He’s perfectly fine until that moment when the veneer crumbles and he lets everything spill that he’s been holding in.  And then he replaces the veneer and is "fine" again until the next crumbling.

I, on the other hand, am definitely not fine.  I’m not sure how I appear on the outside.  I probably seem fine.  Maybe a little quieter than normal, if you really pay attention.  Still, the sickening feeling is sitting right in the pit of my stomach.  I know this feeling well and can even predict how long it’ll be there for.  I’ve seen this kind of thing affect people who aren’t on the spectrum and they seem to get over it quickly.  A day later and it’s ancient history to them, or at least not something that they seem to obsess about internally for hours on end.  For me, though, I’ll be reliving every second of this event for the next three days, at least.  I’ll replay the scene hundreds of times, each time pausing it and criticizing my decisions.

"Now, see.  Right here?  Where you did A?  You should have done B!  How could you be so stupid as to have done A?  What were you even thinking, considering that A was an option?!!!  Sheesh, you’re such an idiot."

Yes, I will insult myself also.  I’ll let my internal critic rip my self-worth to shreds.  Ironically, I’ll self-exclude myself from social interactions because engaging in them means crawling out of my own head and this will seem about as easy as scaling Mt. Everest.

"Sure, I’d love to have a conversation with you.  Let me just get out some ropes and scale this sheer rock wall, first."

Eventually, I’ll get over it.  Where "get over it" means I’ll internalize it enough to not think about it and will "be ok" until the next event pushes me back into my self-criticizing hole.

The worst part?  The feeling that NHL is going through this too.  Maybe he’s perfectly ok.  Maybe he had his upset moment and moved on.  If so, I seriously envy him.  Or maybe he’s secretly ripping his self-confidence to shreds as well trying to think of what he could have done to have been a better friend so he’d have been invited.  Maybe he’s thinking back on every "wrong" action he’s ever taken (regardless of whether he was really wrong or not) and criticizing himself about it.  And, if he is doing this, then I have no clue on what to do to help him.  How do I help my son defeat a demon that I myself have yet to slay?  One that, right now is sitting on my shoulder telling me that I’ve failed as a father and obviously have never helped my son with anything ever.  (A complete lie, I know, but the demon is persistent and says it until I begin to believe it.)

How do I make him feel ok with being excluded when I still feel that pain of being left out?

Autism, The Friendship Void, and The Communication Chasm

autism-chasmAt a local Autism support group we belong to, we recently covered the subject of friendships. Kids with Autism can find friendships more difficult to form and keep than their neurotypical peers. We went over ways to help out kids, strategies we could employ, and pitfalls to avoid.

Overall, the night was very productive, but it did make me realize that this is one area of life that I’m not going to be able to help NHL much with. As it stands, I have no friends of my own. I have people I feel I can be open with to some degree at work. I have people I can talk to on social media. However, when it comes to actual, real life friends to hang out with our talk to, I don’t have any.

For me, it goes beyond not having any friends, though. I honestly don’t know HOW to make friends. The idea of walking up to some stranger and introducing myself fills me with anxiety. My mind will go completely blank and I won’t be able to introduce myself much less carry on a conversation. If I do manage to get a conversation going, I’m likely to forget about how conversations need to give and take. I’ll dominate the conversation – talking only about myself and not asking about them. It’s not that I’m trying to be rude. It’s just that chit chat doesn’t always come naturally to me.

Work friendships tend to be easier since I can initially limit conversations to work topics, slowly expanding the range as I feel more comfortable.  These friendships are self-limited by the fact that they take place at work, though.  No matter how comfortable I might feel around a work-friend, there are just some topics are off limits that would not be unusual to discuss with a friend from outside of work.  The same holds true for social media friends.  I feel more comfortable typing responses rather than talking (more on that later) so social media is a perfect outlet.  However, again, this tends to be self-limiting.  When I feel like complaining about something or someone, a public forum is not always the proper venue.  After all, a conversation with a friend can be private.  Tweets are not.

Of course, this situation isn’t new. I wrote about this way back in 2009 and again in 2011. Most days, I manage to hold myself together just fine, but recent changes have been happening in my life that have weakened me. I can’t stand change normally, but change plus a realization of how I don’t have friends? I’m barely keeping it together now.  This is where a neurotypical person would know exactly how to express these feelings. For me, though, it tends to be more complicated.

First of all, my emotional cage tends to keep all of these feelings bottled up. I feel like there’s a chasm between me and everyone else. I want to tell the people on the other side how I’m feeling, but I can’t shout it loud enough for them to hear.  To make matters worse, the stronger my emotions, the harder it is for me to express them. The worse I feel and the more I need other people’s support, the less I am able to let others know what it is I need.

The one reliable communication method I have is writing. When I write, I can type out my feelings, edit them, reword them multiple times, and hone the message until it’s perfect. Writing also lets me express myself without fear of immediate negative reaction. In contrast, talking to people requires me to come up with the perfect phrasing on the fly (with no undo capability) while risking rejection or mockery if I don’t get it just right.

Then, just when it seemed like interpersonal communication was as hard as it could possibly get, my brain tosses in one more curveball. In Battling My Own Brain, I wrote that my mind will play this refrain for me over and over:

Nobody loves me.  Nobody understands me.  The world is against me.  People are doing things to hurt me on purpose.

This morphs slightly when I plan conversations in my mind. My mind will fill in the replies with the worst possible responses that can be uttered. If it’s a mental conversation with my manager, my brain will have him firing me for no good reason. If I’m picturing a discussion with my wife, my mind will steer it so that she demands a divorce.  To be clear, neither of these things have happened and I have no evidence that either one is anywhere in the realm of possibility at the moment or for the foreseeable future.  Still, lack of proof doesn’t stop my brain from devising nightmare scenarios.

As you might imagine, this does NOT help with my communication issues. I often begin conversations upset from imagined slights and on the defensive over even the slightest wrong turn the discussion takes. It takes a lot of mental willpower to see through my mind’s deception. It feels all too easy to fall into despair over imagined slights.  I also need to use a lot of mental resources to not only push past the emotional instinct to stay quiet but to figure out the proper on-the-fly responses during a conversation.  All too often, this requires more than I have and I wind up feeling like a prisoner in my own mind. I’m trying to scream to be let out, but no words come to me. I want to hang out with a group of friends to discuss hobbies, current events, and personal issues, but friendship requires communication which can be very difficult.  Many days all I’m left with is a brain that seems determined to sabotage any effort I make to communicate with others.

NOTE: The chasm image above is by Pearson Scott Foresman and was donated to Wikimedia Foundation as public domain.  (I added the tiny "Help!")

Perks From Being Bullied? I Don’t Think So!

Recently, a tweet crossed my stream lambasting someone for writing an article about all of the benefits kids with Autism get when they were bullied. I couldn’t believe it. Surely, nobody could seriously argue that being bullied actually helped kids. I was sure that the article would be dripping in sarcasm with "benefits" like "stops trying to socialize with anyone so they don’t get hurt" or "learns not to trust anyone ever." Instead, the article actually claimed all sorts of benefits that kids on the spectrum could get by being bullied.

I’m both the parent of a child with Autism and has been bullied and someone with Autism who was bullied growing up. My bullying experience left me scarred for many years. Any insinuation that being bullied is a good thing that strengthens kids hits close to home. Needless to say this article upset me.  I know I should treat this article’s author using the classical "Don’t feed the troll" method, but I get the feeling that the author seriously believes her words. Furthermore, I fear that someone without experience with bullying or Autism might believe what she writes to be the truth. Therefore, I’ve decided to post a point by point refutation of her article. I’ll give each way she claims bullying makes kids with Autism stronger, a synopsis of her reasoning, and then an explanation of why she’s wrong.  (I’ll note that I’m not going to link to the original article as I don’t want to give it any more traffic than it has already gotten.)

Promoting Autism-Friendly Programs

The author claims that bullying can be the result of misunderstandings about why children with autism soak and act the way that they do. This, she concludes, the bullying is a good thing because it can be used as an opportunity to educate.

There is a grain of truth in here. Bullying can be done out of a lack of understanding. Also, educating students about why a child is acting the way he acts is a good thing. That being said, an act of bullying – even if it is used to begin an education campaign – is NOT a good event. At best, you are trying to take a bad situation and prevent more bad situations from occurring. We wouldn’t say that it’s a good thing that someone came down with an illness because then they can educate others about the affliction.

Team Work

The author claims that a bullying event will cause you to work closely with teachers, aides, counselors, principals, etc. Since this is a good thing, the author says, it means the bullying was good for the child.

Again, the author mistakes a good follow-up from bullying with the bullying itself being good. Working with your child’s school is good whether or not your child has been bullied. Bullying doesn’t make this partnership good. Again, you’re trying to help prevent further bad events in the future. This doesn’t mean that bullying is good.

Autism Awareness Every Month

The author makes the claim that bullying kids with Autism raises awareness of Autism.

Raising awareness of autism (and of bullying) is a good thing, but there are better ways of doing this than via being bullied. The ends don’t justify the means.

Kids Learn Skills

The author claims that dealing with bullies teaches communication (both verbal and nonverbal) as well as "survival skills, civil liberties, and independence."

I couldn’t disagree more. Being bullied will taught me NOT to communicate with others. The more verbal or nonverbal communication, the more ammunition I handed my bullies to use against me. Bullying will just frustrate kids with Autism, not make them feel more comfortable socializing.

Builds Strength

The author’s theory is that bullying builds strength in a child with autism because they grow closer to parents, friends, and teachers.

This is total bull. Bullying doesn’t give a child stronger ties, it weakens ties. It makes children feel inferior, threatened, and like they have no safe place. Bullied kids often feel like they can’t talk to their parents, teachers, or friends about being bullied because they might be seen as weak. Bullying isolates kids, plain and simple.

Furthermore, it isn’t a foregone conclusion that bullied kids receive support from those around them. Perhaps the bully is a popular star quarterback and dealing with the bullying might mean the team does poorly.  Maybe the school administrators are in denial about their school having a bullying problem and so don’t want to hear about any incidents.  In either situation, the person who is bullied can be shamed and pressured into either staying silent or even into "admitting" that they were the cause of the incidents.  When this happens, the bullied child won’t feel closer to people, but even further isolated and alone.

More Friendships

The author claims that discussing the bullying can lead to more people being friends with the bullied child. In addition, the author contests that bullied kids will seek out new friends and new social activities.

Again, the author is wrong. A bullied child will feel isolated from his or her peers, not drawn to new peers. When social interactions – already a situation that makes those with autism nervous – becomes associated with all of the negatives of bullying, a child with autism is more likely to withdraw within himself or herself and not try to make new friends.

Overall Well-Being

The author contests that teachers looking out for bullying can supervise and intervene better.

Like some previous arguments, the author is both right and wrong. Alert teachers can supervise, intervene, and prevent future bullying. However, this being said, this doesn’t mean that bullying can take the credit for the higher rate of intervention. If a rash of muggings caused people to take self defense courses, the muggers wouldn’t get thanks for any benefits that the self defense courses provided.

Healthy Relationships

The author thinks that bullied kids will learn valuable skills that they can apply to sibling rivalry, "stranger danger," or other threats.

My bullying experience led to anything BUT healthy relationships. When I was bullied, I became so paranoid that I thought that anyone laughing was laughing AT me. This didn’t help me deal with confrontation, it taught me to withdraw further into myself to better protect myself. A child with autism who is bullied might also think that – as horrible as they felt when they were bullied – this is how people treat each other. Without intending to be mean, the child might become a bully himself simply because he’s modeling his social behavior off the wrong people.

Increased Life Skills

The author claims that the bullied child will become a better citizen and act nicely towards others.

When I was growing up, my mother has a poem on the refrigerator called Children Learn What They Live. In short, if a child is raised encountering a behavior, they will think of that behavior as normal and emulate it. A child raised being tormented will learn that fear is the norm. Even if the child winds up being kind so that others aren’t bullied, this didn’t excuse the bullying. It’s more a testament to the child’s reaction to the bullying and not something to thank the bullies over.


The author contends that bullied children get self-confidence and improve their self esteem.

I don’t know what bullied child (if any) she looked at, but I certainly didn’t learn self esteem from being bullied. On the contrary, I learned that I was nothing but the target for everyone’s abuse, I was powerless to change this, and I should withdraw from the world as much as possible. It was only when I went to college – escaping the bullying I suffered in high school – that I started to learn that I was a good person who could have good friends and could contribute to social situations without people mistreating me.

While it is true that people’s reactions to bullying can lead to positive events, this didn’t mean that bullying is a great thing that should be celebrated. Any positive outcome from reactions to bullying are thanks to the people who help out the child being bullied. The bully and his or her actions are not to be credited with any of this. For as much positive that people can make out of the bad situations that is bullying, much more good would come to pass is there was no bullying in the first place.

Happy Birthday NHL–The Sky Is The Limit!

NHL-At-The-BeachToday, NHL turns twelve years old.  He is officially one year away from being a teenager.  That’s a scary thought as part of me still thinks of him as my little baby.  The time from his birth to now has rushed by in a blur.  I’m sure there was some wibbly wobbly timey wimey stuff going on since it both seems like a lifetime ago and yesterday when he was a little baby.  Part of my brain keeps insisting he’s a baby but the other part is starting to plan for him having his bar mitzvah driving a car, dating, going to college, and other milestones of him growing up.

Still, as much as I like to look forward, I think that birthdays are a great time to look back as well.  We’re constantly and changing.  The people we were a year ago are nothing like the people we are today.  I figured this would be a good time to think back on everything that NHL has accomplished this past year.

First and foremost is middle school.  Going into sixth grade, we were afraid of how NHL would do in middle school.  Given his Asperger’s syndrome and his problems with executive function, we were sure that the transition from class to class would throw him off.  We mentally prepared ourselves for a year-long fight to help prop him up as he crumbled apart.

That fight never came.

What we failed to see coming was that NHL, like many on the spectrum, thrives on schedules.  He likes knowing just what is coming and hates when plans consist of "well, we’ll see what happens."  Furthermore, when a schedule is set, changing it causes disruption equivalent to have a 8.0 earthquake hit.  In elementary school, there was one teacher teaching everything (except for a few special classes).  This meant that the teacher could extend one lesson a bit longer if he or she felt like the extra time was needed.  For NHL, though, these willy nilly schedule changes rocked any security he had in the world.

In middle school, though, there was a loud buzzer that would ring to signal the end of class.  It didn’t matter if the math teacher really felt like she needed five more minutes to finish this lesson.  The buzzer sounded which meant this class was over and they had to get to their next one.  The structure of this routine (combined with an amazing sixth grade support team) helped NHL shine as a student.  As for us: for the first time since NHL first started daycare that we really felt like we weren’t fighting major battles.  There were times when we had to go up to bat for NHL, but it felt like we were moving couches and painting rooms, not trying to get four walls and a roof in place.

NHL’s second accomplishment is the nature of his academic achievement.

NHL began to take pride in his grades and loved school.  Granted, I think he has always liked school a lot, but there were times when these "like school a lot" were punctuated by moments when he cried over going back into bad situations.  This year, though, he LOVED school the whole way through.  His love of school translated into a love of learning and he really showed how powerful his brain really is.  He got silver honor roll the first two semesters and, not satisfied with that fantastic performance, made a declaration that he would get gold honor roll the next time around.  He put in the hard work, stayed after school when he needed additional help, and pushed himself.  In the end, he got gold honor roll in the third semester.  They don’t give this award out in the last semester, but he would have gotten it then as well.  To give an example of how much he pushed himself, his science final exam took his class grade down because he "only" got a 97 on the final.  Previously, he had a science class grade of 100.

Another example of NHL pushing himself was when he participated in NYSSMA.  His band teacher wanted him to play the snare drums, but NHL had his eyes set on timpani drums.  I’m not a drum expert by any means, but from what I can gather, timpani are much harder to play – in part because they need to be tuned.  While NHL was waiting to be called in, he talked with a girl from his class.  She mentioned how she was really nervous.  NHL, however, was perfectly calm.  There was no sign whatsoever of any kind of performance anxiety.  He was going in to do something he loved doing and was totally confident in his skills.  (I envy him when he’s like this.)

I was allowed in for the first part of NHL’s performance.  He was asked to tune the first drum and was allowed to use a bell as a reference tone.  Then, he was asked to tune the second drum to a different tone using only the first drum as a reference.  He carefully tuned the instrument.  When he was done, the instructor asked if he was sure that it was right – seemingly giving him a chance to correct a mistake.  He confidently said it was right and then the instructor dropped the "you made an error" façade and agreed with him.  The end result was that he did really well in NYSSMA.  His band teacher thought that timpani would be too difficult for him, but he set his mind to the task and pushed himself until he achieved his goal.

NHL also accomplished a lot in social development.

Due to Asperger’s Syndrome, NHL has always lagged behind his peers in social and emotional development.  He may have been 11 years old, but socially and emotionally was about 8.  Needless to say, an "8 year old" in a class amongst 11 year olds – especially one with an intellectual age of about 14 – doesn’t tend to make a lot of friends.  It’s not that NHL didn’t want to make friends, but he genuinely doesn’t know how to or just what constitutes a "friend."  (I have similar issues with this, but that’s a topic for another blog post.)  Still, he learned how to work with other kids and while this might not have turned into a ton of friends, it has laid some important groundwork.  He seems to have a slightly better idea of friendship and can interact better with his peers.

As an example here, I submit the case of the white water rafting trip.  NHL typically doesn’t like being splashed.  He detests water in his eyes and, so, we were very apprehensive when we were told that there would be a white water rafting class trip.  We won’t even go into the fact that he can’t swim.  (See my embarrassing pool lesson post from nearly 6 years ago.)  It didn’t help when a teacher joked with NHL that she was going to squirt him with water during the trip and he took this a) seriously instead of as a joke and b) as an statement of malice from the teacher directed at him.  We decided that it would be best for me to accompany NHL to help defuse any meltdowns before they occurred.

The trip went swimmingly, though.  (Pun intended.)  He took a front seat on the raft to help lead his group and didn’t care that this meant he’d get splashed more.  In fact, he seemed to relish when the water drenched him.  In a calm area, when the students and teachers got to use water squirters and buckets on each other, he relished shooting his peers/teachers, enjoyed helping his fellow raft-mates to shoot peers/teachers (by steering the raft in exactly the right direction), and even was happy when he himself got hit by others.  It was all in good fun and he not only recognized this but was fully participating.  Somehow, I don’t think One-Year-Ago NHL would have done quite as well.  At the end of the trip, he begged me to bring him back – only this time with B and JSL.  (Sadly, we didn’t get to go back this summer.  Maybe next summer, though.)

There is so much more I could go on and on about how NHL has grown.  Though I still want him to remain my little boy for as long as possible, I’m constantly amazed and proud of the wonderful man he’s becoming.

Happy 12th birthday, NHL.  To quote Matt Smith’s doctor as he began to regenerate:  "I tell you what – it’s gonna be a whopper!"

Asperger’s Syndrome and Siblings

I’ve written quite a lot about Asperger’s Syndrome over the past couple of years.  I’ve written about how people with Asperger’s can be excessively honest, reliant on schedules, and can have trouble expressing their feelings.  One thing I haven’t examined, though, is how those who are neurotypical react to those with Asperger’s.  Specifically, how does Asperger’s affect the neurotypical siblings?

In many ways, NHL is three different ages.  Years-wise, he is eleven.  Intelligence-wise, he is twelve or thirteen (sometimes more).  Socially and emotionally, though, NHL is often actually younger than his brother.  At times, this means that the boys get together well – since NHL is operating at about the same level as his brother.  Other times, though, JSL will get very frustrated with NHL.

When it comes to playing games or watching television, NHL will often dominate. He chooses what they watch/play, when, and has been known to alter the rules as he sees fit. He doesn’t mean to act like this, but the give and take that neurotypical people take for granted is hard for him.  NHL can also focus on topics and talk about them long after the conversation should have ended.  He doesn’t always realize that everyone isn’t always interested in what interests him.  He also have trouble recognizing the line between playing hard and playing too hard.  When the boys lightsaber fight (using pool noodle lightsabers), NHL will often get so into the game that he will hit his brother and me too hard.  Thankfully, the soft foam means no injuries, but it still hurts.  Finally, NHL can engage in some socially inappropriate behavior (verbal outbursts, bodily functions that should be done in private).

For the most part, JSL is patient. He will let his brother choose the television show and will (pretend) to listen as his brother talks about the latest video game developments. Recently, though, cracks have formed in JSL’s patient facade and he’s grown frustrated by his brother more and more often.  His frustrations will spill over into yelling, hitting, and stomping.  (And his teachers think he is so polite and quiet.)  JSL has gone so far as to demand to be taken to his grandparents’ house so that he can escape his brother.

We try to give JSL some time away from his brother.  We go on "date nights" where B and I each take one boy and head off to do something fun.  This lets us bond with our kids and gives JSL some room to be himself without his brother around.  Still, we can’t keep them apart all the time.  During weeknights, with school the next day, having JSL sleep over his grandparents’ house isn’t an option.

Sadly, when you have a child with special needs, that child often demands more attention than your non-special needs child.  In your quest to get everything your special needs kid requires, it can be easy to overlook a non-special needs child.  The stress of living with their special needs sibling can take its toll, however.  Never just assume that your children who don’t have special needs don’t require special attention themselves.

(By the way, when I asked JSL for him permission to write about this, he gave an excited shout and proclaimed "Now people will know what I have to put up with!")

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

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