Marking World Autism Awareness Day: Sam’s Speech on Bullying

For years, I have struggled to understand why my son was apparently “emotional,” “aggressive,” “grunting” and many other adjectives and verbs that were used by some of his teachers to describe his behavior. I was summoned to the school on many occasions, (sometimes as soon as I’ve dropped him off) with the request to pick him up, as he’s suspended for bad behavior. Looking at that angelic face, surrounded by curls, with these big teary green eyes with the longest eyelashes you’ve ever seen, I couldn’t help but wonder: What makes him act so differently at school than at home? What was the trigger that had such a strong influence on his normally very gentle character? His elementary school teachers finally agreed with me, after almost three years, in second grade, that they may need to do a functional behavioral analysis, to identify the trigger points and times of the day. And bingo! It was the lunch line! They fixed it by having him take a different route than the other kids, but they never really found out what exactly was happening in the lunch line that was so distressing to Sam. 

Today, almost 6 years after we had these issues, he finally told me what was going on back then. And it wasn’t in a candid one on one conversation, but in an essay he chose to write and present at school as part of his Language Arts public speaking assignment. 

The speech he wrote is focused on bullying.He researched and wrote it for days, and then he also practiced reading it. He asked me to listen to him and told me that he had looked for inspiration to none other than the speeches of Martin Luther King, and JFK. He had watched their videos for hours, until he decided to read his speech to me. (I must confess I could hear the speeches through the door of his room, but decided to wait until he was ready to tell me why he was watching them.)

There is no better day to release it than on the World Autism Awareness Day! Bullying is not exclusively reserved for children on the spectrum, however, it is almost inevitable as kids with these type of social interaction issues, are such easy targets. 

He said, he chose bullying as his topic because he wanted people to know, and “when they know, they won’t do it..” he said.. 

 

Here is Sam’s take on Bullying:

BULLYING: How to Identify and Stop It

There are at least 160,000 students who miss school every day because they are afraid of bullying, intimidation and abuse. This is a statistic from the national education association (NEA). The reason I decided to focus my research on bullying is because I have personally experienced how some children have said hurtful things about me, like how I smell bad or commented how I look. They say it in a way that I don’t see it coming and it makes me want to defend myself and fight back. I try to answer their insults to the best of my ability, and sometimes I feel frustrated, lonely and sad.

My teachers and my mom say I should ignore these remarks and I try, but sometimes it’s very hard. So I decided to use this project at school and let people know what bullying is and how to stop it. In this paper I talk about:

• what are the signs of being bullied,
• what are the types of bullying,
• how to avoid bullies,
• how often does the problem occur,
• how to prevent bullying in schools and neighborhoods,
• how schools should respond to bullying, and
• cyberbullying: what is it and how to stop it.

The first signs of a child, being bullied are that he or she feels sad, isolated, scared, lonely, has no friends, and is frustrated. My personal experience is that I became agitated, angry, and I was very loud telling the kids, sometimes bad words to hurt them back. But that backfired because then the teachers and my mom thought I was bad and mean. It took me a long time to tell them how I felt.

The types of bullying are

• physical,
• psychological
• cyber.

I first experienced physical bullying when I was in second grade. A boy from my class used to sneak up behind me in line for lunch and give me a painful wedgie. Another time when I was in sixth grade, a boy used to kick me in my private parts and run away. There were many other instances when I experienced physical bullying. They are too many to mention.. Every time, they [the bullies] did it so fast that no one saw them. I was left with pain and anger. And my anger was very loud. It was so loud, that it got me in trouble and often I ended up in the principal’s office or in time out. Physical bullying can be very painful and scary. No one should have to go through it. I was too confused to tell the teachers or my mom what was happening. I thought I could defend myself.

Psychological bullying is even sneakier. Bullies can tell you something in passing or they can laugh at you and then they can say they are just joking with each other. My experiences were very difficult. Since as far back as I can remember, there were always some kids who would call me names, or who wouldn’t want to sit close to me, and laugh, and point, and make faces at me.But It was always very hard to prove, and even harder to stop. I hope that all kids who experience psychological bullying are brave enough to share it with teachers and parents, because that’s what helped me the most.

I don’t know much about cyberbullying because I don’t use technology to communicate with my classmates. From what I read about it, it can be as bad as physical and psychological bullying combined. Bullies can spread bad rumors about you and that can be also used to bully you at school physically and psychologically. So don’t let the bullies win, always talk to an adult and ask for help.  

There are not that many ways to avoid the bullies at school. They could be in your class, or in the lunch room, or even in your own neighborhood, so you would be stuck with them on the bus on your way home. Some of the ways that have worked for me are:

• Just ignoring what they say
• Walk away when they start annoying you
• Surround yourself with friends
• Stay in touch with a trusted adult – like talk to your teacher or principal. (I like to talk to my vice principal Mr. V! He always has great ideas for me!)

Bulling can happen once in a blue moon or as often as many times during the school day. It doesn’t matter how often it happens, it’s wrong and you shouldn’t be silent about it.

So, how to prevent bullying altogether. Unfortunately, there is no easy answer or solution. Educating people about bullying is one way. Schools and neighborhoods can create focus groups and meet weekly to discuss ways of identifying bullying behaviors and bullied students, so that the problem doesn’t get worse. It would be a good idea to also educate students who are being bullied that there is no shame in admitting that your life is miserable because someone is bullying you.  Also teach students that it’s ok to ask for help.

I think schools should respond very quickly to cases of bullying and talk to the parents and students about it. The best way is to probably call an assembly of all students, parents and teachers and let them know what they found out and how they plan to deal with it. Of course no names should be mentioned, but the problem should be discussed immediately.

Cyberbullying is just what it sounds like: bullying on the internet, or through text and email. The cyber bullies send mean messages, post embarrassing photos of someone, kick them out of online groups, spread nasty rumors about the person, and many more.  The best strategy to dealing with cyberbullying is the same as in physical and psychological bullying: ignore and remove yourself from the situation. Next steps is to seek help from someone who is familiar with that technology, and find ways to block the bullies, while preserving what they write for evidence. Most of these cases can end up really badly for the bullies. Unlike the psychological and physical bullying, there is a lot of evidence that they are doing it.

In conclusion, I would like to say thank you to everyone who has helped me overcome my problems with bullying and my reactions to it. I hope that this paper can help someone in their silent fight against bullying.

Thank you for your attention!

–Sam

Autism, Age, and Social Interactions

The Third Glance

The original title of this post was “Mental age” and Autism, which really does fit to what I am about to discuss, but since it can be read numerous ways, I changed it so that the title itself was (hopefully) more clear. I also wanted to stress that this is how this applies to ME, and while I would guess that there are people who relate, it is by no means ubiquitous.

I’ve always had friends who are a little bit older than me. One of my closest friends is a year older (almost exactly) and we’ve been basically inseparable since first grade (for me, 2^nd grade for her), despite being in different classrooms, schools, and ultimately, coasts of the continent, we’re still extremely close, thanks to the wonders of the internet. It’s a pattern I’ve seen most of my life. I do not get along with my…

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Braces! Day 2 SUCKS!!! or How to get Homunculus to move out…

My poor munchkin is now with a metal smile! I did everything possible to persuade him how he will have the most handsome smile and his teeth will be aligned and beautiful.. and he really bought into it the first day… But today (day 2) has been a nightmare! He woke up in the middle of the night, he didn’t eat dinner, he hardly touched his breakfast, he complained and  complained, while I was trying to keep his spirits up and tell him it will get better very soon. 

Not even an hour after I took him to school, as I am driving in a manic 8am traffic jam on a 5 lane freeway (why do they even bother to make 5 lanes… it doesn’t help anything. They even open an extra emergency lane in the morning. Who are they kidding?! Nothing makes this molases move.) But I digress. It doesn’t take much to get me there with traffic. 

So I got the call while I was in the longest stretch between exits. Something like 5 miles until the next exit. And when traffic is trickling down like a clogged sink with dirty dishes in it (yep it’s gross!) and you get a call that your child is crying with real tears and is in excruciating pain, and you can hear his deep voice (he went from a squeaky high pitch we were so concerned about, to a firm bass-bariton in a matter of weeks when he turned 12) in the background… All you can think of is my heart aches with him and I need to be there in this second, and this traffic is holding me back.

I called the office that I will be late, waited (impatiently) in a 50 car line to cross a traffic light on my way back to the school, while still on the phone with him and his wonderful teacher, stopped over by the Orthodontist, Starbucks, and RightAid drugstore to get my supplies! 

I made it about 30 min later (for a distance of 5 miles that’s almost the speed of light in morning traffic) with a grande vanilla bean frapuccino, no whip (just the way he likes it), a bottle of Advil, Orajel, and a mouth rinse. I found him in the most miserable state I’ve seen him a long time, in the nurse’s room. His face was covered in tears. The pain was pouring out of his beautiful eyes. My heart sank. Here comes, I can just feel that wave pouring over me… the GUILT!

“I made him get braces! What’s so wrong with his teeth. Look at my teeth, I had no braces and I turned out ok and people complement me on my teeth. And now, I made my baby suffer! LIke it’s not enough that he needs to cope with all his other Aspie related shortcomings, he needed pain! You are a cruel mother! You should go right back and have these torture instruments removed from his mouth. .. “

Oh yeah, I have mastered this one! I have made a true commitment to daily punishment of myself. You know how I know? Because I have a little helper in this one. Yes. Not a day goes by without that little devil creeping into my head, pulling up a recliner (he always has one handy, go figure!) and a cocktail and just sitting there, basking in the fire glow of my raging guilt-tripping! And because I provide, he’s grown and is developing nicely. I’d say he is soon to be in the 90th percentile and growing. Yeah, I might as well call him my third child. And, oh, I have discovered, that I am so protective of him, that nothing can ever harm him. Anyone dare tell me that I should let him go and never look back – I am not a nice person with them. I find all the reasons (He helps me with the list) of why it has always been and always will be MY FAULT! Oh, yes, he’s there to stay! He’s got the food, he’s got the recliner, he’s got the constant supply of flaming guilty energy to keep him warm… Yes, I am growing my own personal Homunculus! Remember Faust and his Homunculus?

(this is a drawing of mine from some time ago, that I did name Homunculus.. thought it would fit here.)

 

Yes, except instead of the Philosophy stone, I have no idea, what will my dude help me discover? I have no idea why I’m keeping him so cozy. Well, he is a flatterer, for starters. He knows exactly when to throw me a bone and tell me I am doing the right thing, because I’m being easy (on myself and on my kids) and he’s rewarding me for that. “See?, you are being understanding and patient and supportive..That’s what you should do. You should let things happen, and at the sign of the first resistance, just stop, give in, and let him do it, so he’s not feeling deprived.. because remember, after all, it’s your fault that he is different, and now you have to pay for it. And pay for it you shall. Don’t worry. I’ll make sure of it every single day. I’ll find a little thing for you to feel guilty about so you don’t forget. Yep.” 

But then something miraculous happened. Just as I was about to tell Sam “Ok Baby, let’s just go to the doctor and have these removed.. ” I was touching his forehead and cheeks lightly to make him feel better, as he was drinking his smoothie, when he looked up at me and said: “Ok Mom, I think I can do it! I am a big boy! Link would do it!”  (Link is the one who he identifies with from Zelda.. – video games people! learn your video games!)

My mouth was still open, ready to say what Homunculus wanted me to say, but Sam, a.k.a. Link just shut him up! I couldn’t believe it! And I knew it, that at this moment, Homunculus just realized, it ain’t gonna be that comfy any more in that head… So, I think he’s packing now.. I’ll keep you posted! 

Meanwhile, after Sam finished his smoothie, I applied the orajel, gave him an Advil and a big hug, and he just took off, because “I have a big art project to finish! Gotta run!” he said. 

As for me, I doubt there will be a greater accomplishment anywhere else in my life today. I don’t think anything else can top that. 

Even the traffic is now somehow a much needed slow down in the rapids, that is my world. 

 

I figure if Tom Cruise can pull off braces, then we can too! 

Grow Out Of It, Will You?

When they say it’s World Autism Awareness Day, does that mean, everyone is now sufficiently aware? April 2nd, 2008, the UN announced that this would be THE day to learn more about autism. It was a big to-do. I was a producer at a major international TV network and we were going to cover this day, wall to wall! Programing was rich with actual autistic and Aspergers children and adults, experts, book authors, doctors, parents. I was thrilled to see so much attention as well as new information pouring out of the TV screen. I was so proud to have been an instrumental part in making this happen. Then, a year later, April 2nd came and went, and there was absolutely no mention of it. 

Stories have been coming and going, experts have agreed to disagree that vaccines are to blame partially for the increasing number of autism cases, children have miraculously “healed” while others have been accused of cold blooded murder

And on that note, I would like to point out to the media, that autism is NOT a mental disease! Had it been mental illness, there would have been a pill invented that would cure the aforementioned disorder… such pill is not invented as of yet, so would the media kindly cease the use of Mental Disease in connection with Autism and Aspergers !…. 

In a flurry of contradicting opinions, painful experiences and a myriad of “cures” or lack thereof, I can’t help but ask: what good has come of having a world autism awareness day? What has changed because the Empire State Building or some other building in Dubai, have been lit blue on April the 2nd, or that a woman has decided to keep her blue lights on a whole month in honor of autism? Do the stories in media, blogs, videos, films about it, changed anything.

Ummm NO, and paradoxically, the rate of autism diagnosis among school aged children has jumped in the last years. 

According to a CDC study:  Children aged 6–17 in 2011–2012 were born in 1994–200 (approximately) and would have been about ages 2–13 in 2007 when the previous NSCH was conducted. The estimated prevalence of parent-reported ASD for that birth cohort in 2007 was 1.16%.

Clearly, the awareness is now here. Loud and clear, we know that autism is prevalent. More children will be diagnosed with some form of autism spectrum disorder this year, than with AIDS, cancer and diabetes combined! 

Unfortunately, the awareness has done nothing to make the disorder more socially accepted. While some neurotypical children are completely and totally accepting of their ASD peers, parents  of neurotypical children continue to be “protective” of their children and either discourage, or find a more politically correct form of avoidance of children on the spectrum. And later, when the neurotypical children become neurotypical adults and neurotypical parents of other neurotypical kids, they will do the same – prevent and avoid contact with anyone who’s slightly different than their child…  Until, one day, they find out, their child’s quirky habits and lack of eye contact, are just that – autism!

As a result of this social lack of acceptance, the ASD children’s social ineptness is exacerbated, and their social inadequateness, magnified by the rules and punishments imposed in the public (and private) school system.

This may go against the grain of many “autism friendly” private schools and their supporters, but my personal experience with a number of them, is that not only are they poorly equipped to meet the special needs of their already struggling students, but they are also not helpful when it comes to counseling and creating effective and comprehensive IEPs (individualized educational plans) and BIPs (behavior intervention plans).  

In the light of the latest depressing statistic that one in 50 children is on the spectrum, what is a parent to do? You have three choices: public, private or homeschool. I have tried all three. There is no panacea, there is no one straight and definitive answer, because it will always depend on the PEOPLE who work with your child. Homeschool is of course entirely dependent on the parent. One would think, this is perfect. The parent can create the perfect program, teach it to the child in a perfect way… Not so much…

Have you noticed how even parents of neurotypical children complain how the kids don’t come with instruction booklets, and they have no idea if they are doing the right thing with their children.

Well imagine how a parent of a special needs child feels.

First of all, there is the guilt trip. No matter what religion you are or not, it is inevitable that your conscience will whisper in your ear night and day, that it must be something that you did, or didn’t do that contributed to your child being that way. 

Then come the different stages of acceptance. Speech is delayed, so you attribute it to various factors, from too many languages spoken in the household, to a stressful situation, or a dog barked too loudly close to the baby, and he got scared.. . Then you sort of start to see the signs, but you refuse to look at them, and more importantly, refuse to label your child. I mean WHO wants that?! It’s AUTISM, it’s not LICE! You can’t just shampoo it off, wish it away.. NO. It will stay with you, and your child and your family your whole life! 

Then it slowly starts to sink in, and the permanent heavy feeling settles in, that your child may never have a life on his/her own, may never have a family of his/her own, and the worst fear of all parents:

When you die… your child…no matter how grown up he/she is, will have NO ONE to take care of him/her! 

This is probably the most terrifying fear of all… You feel so helpless in the face of time and this.. this.. whatever this “condition” is, that deters you from actually meeting your child!

I saw “The Notebook” the other day. Hadn’t seen it when it came out. Unfortunately, the descriptions cable gives, have usually little to do with what the movie is about. Her Alzheimer’s onset in many ways reminded me of what Aspergers is about. Except Alzheimers takes away someone you already knew. They had these glimpses of her real self, tiny increments of time, when she was “back” and could talk normally and recognized her husband. Well my son recognizes me, and everyone around him. He remembers everything he’s ever seen or read. We have long conversations about his interests and characters he plays with, or music he’s learned or listened…So in that regard, we are lucky. He has memory for all of us put together.  But will I ever have a conversation with him about how he feels about something? Will he ever grow out of it???

It’s a beast of a “condition” I must say… It is unpredictable as the March weather we have right now. There are some months, when he “outgrows” certain traits in leaps and bounds! He’s interested in cool things, he knows everything there is to know about the American Presidents, the planets and galaxies and stars, and most recently about guitar, guitar players since the 50s and their biographies. These are the times he usually excels in school, and has a mild and friendly demeanor and is extraordinarily engaged. 

These however are followed by periods of irritable disposition, lack of interest in anything school related, resistance to doing things he didn’t mind before – like writing his homework on his own, reading aloud in class. 

This outgrowing thing, is sort of a tango that we keep dancing during the years – two steps forward, one step back. 

My favorite is when friends who have no children on the spectrum, or any children what so ever, are quick to offer advice on how I shouldn’t give in and spoil him with satisfying his wishes or spending time with him when he asks. And I am yet to find the most polite way of telling them to go …… themselves. One doesn’t necessarily want to burn bridges, but if the “awareness” we’ve created in the past five years is still not effective, then it’s time for a different campaign.

That’s why I am attaching a blog post by someone who is going through this every day. Read their experience and spread the word.

It’s not only about acknowledging the problem and making people aware, it’s about looking for a solution, each and every day! 

And in the meantime, teach people to be tolerant, accepting and welcoming differences of any kind! 

 

Savant, a new type of artist

Always acknowledge and appreciate amazing Aspies!
Aleksander Vinter a.k.a. Savant, the Norwegian composer/musician/producer is on the spectrum, yet he creates music since he was 4! He transformed classical pieces, video game music, black metal and house, into a distinct style that music industry experts are trying to fit into dub step, electro house, glitch-hop, trap, and moombahcore.
He’s unique, multifaceted, prolific and obviously very humble!
At only 24, he just released his 9th album since 2009! He should be way more famous than he is.
Psyched that he’s making his first US trip and first stop in the ATL! Can’t wait! Shout out to Savant!

Savant – Mother Earth (Original Mix)
Savant’s track “Mother Earth” off of his December ‘Alchemist’ LP. Beautiful electro house tune, very similar synthwork to Mord Fustang. Enjoy!

New Study Offers Hope for Rebuilding Synapses in the Autistic Brain

Following up on my previous post on Temple Grandin‘s brain scan, I researched other sources and found this study, that I think is ground breaking in the decoding of autism. 

There are people who say Autism is NOT a disease for it to be cured. And I completely agree, it’s not a disease, and our children are far from sick or disabled. But wouldn’t it be simply amazing to be able to meet them… to really meet their personalities, if this treatment really works. 

I welcome comments and suggestions!

English: A “puzzle” ribbon to promote Autism and Aspergers Awareness. (Photo credit: Wikipedia)

A new experimental treatment of autistic children gives hope for reconnecting of impeded links between synapses in the brain. A double blind randomized controlled trial bumetadine with 60 autistic and Aspergers children showed some promising results.

An abstract of the study is below. The full article was published in Translational Psychiatry (2012).

Gamma aminobutyric acid (GABA)-mediated synapses and the oscillations they orchestrate are altered in autism. GABA-acting benzodiazepines exert in some patients with autism paradoxical effects, raising the possibility that like in epilepsies, GABA excites neurons because of elevated intracellular concentrations of chloride. Following a successful pilot study, we have now performed a double-blind clinical trial using the diuretic, chloride-importer antagonist bumetanide that reduces intracellular chloride reinforcing GABAergic inhibition. Sixty children with autism or Asperger syndrome (3–11 years old) received for 3 months placebo or bumetanide (1 mg daily), followed by 1-month wash out. Determination of the severity of autism was made with video films at day 0 (D0) and D90 by blind, independent evaluators. Bumetanide reduced significantly the Childhood Autism Rating Scale (CARS) (D90−D0; P<0.004 treated vs placebo), Clinical Global Impressions (P<0.017 treated vs placebo) and Autism Diagnostic Observation Schedule values when the most severe cases (CARS values above the mean±s.d.; n=9) were removed (Wilcoxon test: P-value=0.031; Student’s t-test: P-value=0.017). Side effects were restricted to an occasional mild hypokalaemia (3.0–3.5 mM l⁻¹ K⁺) that was treated with supplemental potassium. In a companion study, chronic bumetanide treatment significantly improved accuracy in facial emotional labelling, and increased brain activation in areas involved in social and emotional perception (Hadjikhani et al., submitted). Therefore, bumetanide is a promising novel therapeutic agent to treat autism. Larger trials are warranted to better determine the population best suited for this treatment.

Temple Grandin Goes on a Journey Inside Her Brain

Fascinating brain imaging done on Temple’s brain at Carnegie Mellon University. The discovery is incredible, and it explains so much about why autistic and aspergers kids would be brilliant at some things, but lack the socially acceptable skills.. Worth watching and sharing with parents of neuro-typical kids!

Halloween “Gangnam Style!”

Sam’s been waiting for Halloween anxiously this year. It was 2 days before Halloween and he still hadn’t decided on his costume.  Years past, it’s been much easier, as his interests have been very concentrated into pretty much one thing. We can go

Captain Jack Sparrow (Photo credit: Wikipedia)

back and name every Halloween we’ve had: The Jack Sparrow year, The Darth Vader Year, The Year of Megatron, and so one and so forth.. This year was a hard one.
For the first time, Sam began expanding his interests, and not completely cutting all ties with his previous interests. It was also the year he began being interested in fiction – both books and movies. We had the hardest time in language/ arts when there were books with stories he had to read and analyze, as he had no interest whatsoever in a made up world of characters. He wanted to read about planets, stars, and American Presidents. But this year, after much deliberation he started embracing fiction characters.
Thus, the choice of costume… he wanted to be Blu… you know.. the bird from Rio. Oy! good thing I suggested, Psy, the Gangnam style dude. Toned down much? Not really. Easier to achieve as a costume – yep! As Psy says – “Dress classy, dance cheesy!” – it was a perfect fit for him.
So on Halloween morning we are all gelled, fly-ed, button-ed down in a purple silk shirt, cerulean colored blazer (we had to keep some of Blu’s characteristics) and Blues Brothers type of shades, and “Opa Gangnam style!” we are all ready to go.

We played the song in the car, to really get in the mood… 10 minutes later, arriving at school. And it’s not looking very festive. Kids coming out of their parents cars, dressed just as on any other day.. Hmmmm, something’s fishy.
I decide to walk inside with him, to make sure it is Halloween, or have I confused the days. The lady at the front desk says, with the straightest face possible: “Halloween is forbidden in Middle School!”
Ooops! So now what?!!!?!?
I look at “Psy” who is so cool, he hasn’t even taken off his shades and smile off his face, and then back at the lady..
“Sooooo, should I take him home to change? or bring clothes?”
She gets up and gives him the up and down look a few times, purses her lips left and right a few times.. (i was feeling the “American Idol” jury pressure right then..) And after much deliberation, she announces:
“He’s fine to stay like this.. it’s actually almost an uniform look.”
Phew! We passed that test, but I immediately started thinking about all the laughing and making fun of, he may have to endure from the other kids.. So, I asked him:
“Are you sure you will be ok staying like this today? Even if all the other kids are dressed in regular clothes? Would you like me to take you home and change, or I can bring you clothes to change in here?”
He pushed his shades down to the tip of his nose and looked at me from above, and with the calmest possible voice said to me:
“Mom, it’s time for school and I’m already late. Gotta go now.”
Flicked his shades back up, turned around and left with a confident stride.

My mouth stayed open for a second. I turned around, looked at the lady at the front desk, shrugged, and left.
From the car, I emailed his teachers, “warning” them of possible “gangnam style” dude dropping a dance on them today.

Then a took a deep breath, started the car, and drove off.

Lesson #8674: Sam’s fine! It’s Mom who has the fear, and everyone else who may have an issue with his appearance or dancing can just kiss his @#*^!

Thus my decision to sign him up for cotillion…

To be continued

Field Trippin’ (A Lesson from a Confident Aspie)

Acceptance. Why is it so important to us, neurotypicals? What difference would it make if Suzy thinks that I am a fabulous person and that I’m someone to hang out with.. Or why is it depressing if are left outside a circle, or if we hear gossip about ourselves, or when we see giggling groups at the office… Most people say this doesn’t bother them, but I’ve seen people fall to pieces, after being fired from their jobs or having been rejected by a girlfriend or a boyfriend… For children this can be magnified tremendously, to something that stays with you your whole life. I still remember how some classmates of mine isolated me while they played a game that somehow couldn’t involve one more person. They laughed… It hurt. Eventually, some of us grow out of this need and some just can’t find that one point of balance, or one person who would have their best interest at heart and then it won’t matter.

When I first faced the possibility of a life with Asperger’s syndrome, I was in denial, I was embarrassed, I thought it was definitely my fault. Most of all, I was ready to protect my boy (and his neurotypical brother) from any and all harm, bad word, or a fight.

But as the years passed and Sam grew into his big preteen self, I realized… when one door closes, another one opens, and somehow the balance is there.
Quite early on, Sam has already learned that acceptance is what you give to yourself, so that everyone else sees in you what  you see in yourself.

Yesterday, my angel was on his first ever sleep over field trip! I am so excited and nervous to greet him back!

He’s been literally attached to his iPad and his guitar day and night, so to see him voluntarily relinquish his favorite things in favor of going on a bus to a place he’s never been to before, with no family members….. I don’t know about you, but for a Mom of an Aspergers child , this is one huge deal! He was so excited about doing such a “grown-up thing” with all his new classmates, that I had a feeling, I am going on my first field trip.
One thing about Sam is never-failing! His enthusiasm is infectious! He just can’t hold it back!

And boom, here we fall in the #1 pitfall of Aspergers – social nonacceptance. And why may I ask, is it inappropriate to act anything else but jaded, if you are to be accepted as a “popular” kid or adult for that matter?
We arrived in the morning at the crack of dawn at the school, all packed, bright eyed and bushy tailed. Well, at least one of us… No copious amounts of Starbucks can bring my brain in its original location at 5am, but I was there going through the motions. We did a final check of his items and entered the school, being one of the first ones to arrive.
I sat with him and told him I will wait for as long as he needs me and I can also wait to actually put him on the bus. He looked at me, took a breath, and said: “We’ll see how it goes..” I said ok.
We sat there, in silence, while he was observing all the other kids arriving, greeting each other, finding each other in the crowd, giving each other the bump or the high five, or the shoulder nudge… They all have these “secret” greetings, the cool kids. But no one came to say hi to him. Except one boy and .. surprisingly 5 girls!!! (Go Sam!!) He was beaming with pride and a bit of embarrassment, especially when the girls came around and cheerfully said “Hi Sam!”
So i thought, he’ll be ok. He doesn’t need to be with all the popular kids. God knows, I wasn’t and I turned out ok and best of all, my self esteem wasn’t a direct function of whether the group accepted me or not. There are certainly good things that come out of being the nerdy, dorky, quirky or any other synonym of “weird” kid, growing up. And I believe Sam’s making the best of it.
What I wish is that I could turn a deaf ear and a blind eye to some of the nasty condescending remarks I overheard from a group of boys sitting close by…. I am so happy he has that ability – to switch off negativity and focus on what’s important to him!
What could I have done? I could have sat with the boys and asked them why they think it’s ok to talk about others or laugh at them, I could have asked a teacher to interfere, I could have asked the boys if their mothers were there and have a talk with them…

Would any of this have helped? Perhaps… But will they be the last ones to misunderstand uniqueness for weirdness? I don’t think so. Would their parents agree with me? Probably not. As parents of only neurotypical children, they probably have no interest in discussing something that would be in their eyes a “hearsay…” So I looked at Sam, saw that he was completely happy waiting for his great adventure to start, and had chosen to stay focused on the positive!

I live, I learn, I love! Every day, I become more positive and focused on what’s important. And I know this is because of Sam, and his patient and beautiful older brother (whom I will address in another post.. Or may be not.. It  would not go over well..)

The School Of Rock is on a Roll!

Last week was a “super exciting week” for Sam! He attended a rock band camp which ended with a bang – a concert at a real concert venue! I haven’t posted in a while but since his birthday present – the guitar from a recording artist – came an obsession with rock music and guitars. Next thing you know, Sam downloaded a number of iPad apps and started teaching himself to play bass guitar. We had one forgotten bass left over from his brothers rock-obsession period. Now that he was all pumped up and primed, I thought signing him up for a rock camp would be the next step.

The first day of camp he was ready at the crack of dawn. He got his Sting Labyrinth tour t-shirt out (I bought it form him when I went to see Sting LIVE in concert last month), he also has privatized a hat of his brothers, which gives him that SoCal-Sugar-Ray kind of look. Bass and iPad in hand he was in the car and waiting for me one hour earlier than we would have needed to leave. 

Every day that week he came home “super excited” (new favorite expression) and inspired. He kept asking for pens and notebooks and he kept writing stuff that he wouldn’t share with me.. He said, he was working on his band name and song selection. I thought he was taking things a bit too seriously because I imagined that the teachers at the camp would be assigning them songs depending on abilities. 

Little did I know, fast forward five days later, that I will be sitting in the audience, armed with my DSLR, looking at the band leader announcing his band “Kings of Rock” and their first song – none other than Jimi Hendrix’ Purple Haze! My jaw dropped! Who was that boy on stage?! There was NO stage fright, NO pause or stutter, NO inhibition! He was a real performer! 

“Welcome to our concert! We are the “Kings of Rock” and we’ll perform for you “Purple Haze!” Yeaaaaah! Enjoy the show!… A One – a-two – a one two three… ” And he strum the guitar.. He was really into the music and the rhythm. From watching all these rock concerts and videos, he has picked up a few moves that I had no idea he could or would do in front of so many people. His back and forth rocking with a little head shake was reminiscent of some Mark Knopfler moves. But then at one point during their second song “Pumped Up Kicks” he went in the trance inducing head spin of Flea… Oh boy, was his older brother embarrassed! But Sam was on stage – body and soul – and he could care less what his brother thought of his self expression and moves… 

They took a break and let the other bands play, then came back with a round of Cold Play and the Rolling Stones! Seriously!? Jimi Hendrix and the Rolling Stones – in one week! 

What transformation! He wouldn’t want me to take a picture of him last month. He always kept his hand in front of his face.. and just look at Sam now! 

Thinking ahead to his school year, and looking at the state of special education, the reduction of funds and programs… it saddens me to think that the most important programs for our children – music and physical education – have been hit the hardest from the recent budget cuts.. It’s as shortsighted as it gets, to deprive all children, and especially the ones with special needs, of such enriching programs that contribute to improving their memory, cognitive abilities, lateral thinking, communication skills, and overall culture and health. Instead, it’s all thrown back at parents to find extracurricular (high-priced) solutions to supplement their children’s education…

Camp is not cheap, but I will do anything to keep that momentum going! He is going back next week! I can’t wait for the new performance!

Sam is like a chrysalis that takes some time to mature, but I can already see the beautiful butterfly that’s about to burst out of the shell! 

Of course I haven’t had time to upload all the photos and videos I took, but when I do I will post some. The life of a fulltime working single mother… you’ll understand.

In the meantime, this is one my favorite photos that accidentally allegorically portraits what he has overcome and what is still ahead. 

Peace and love to all!

MomOfSam