Happy Birthday!

So Sam is now officially 12. One more year of pre-teen-hood.. officially, because unofficially he’s already there. He was so excited he could hardly sleep for days.

He wrote his list of presents he “needs” and just to make sure I don’t forget, he also emailed me his detailed list. With prices and possible places where I can find them. His number one wish was to have a NintendoDS 3D.. I have refused to get one for him every since they came out. So now, the guilt really got me, and I succumbed to yet another digital mind numbing device. He’s been so attached to his iPad lately, that I figured, he will get the 3D and forget all about his wonderful science apps that he is using now. But I couldn’t not get it for him after he asked and begged since Thanksgiving last year.. Then followed the numbered and alphabetically organized Hero Factory and Star Wars lego sets.  The list was fairly long, but I couldn’t help but aplaude the fact that he knows exactly what he wants, and has spelled it out perfectly!

So, one day of shopping and a couple of hundred dollars later, I had checked everything off the list, plus my own list: Balloons – check, Cake ingredients – check, a bottle of carbonated apple juice in a fancy champaign looking bottle – check. Yes, I did make him a Vanilla Cake with Vanilla cream filling and sliced almonds on top…

The morning of his birthday, I took one of the balloons and went to wake him up. He shot out of his bed, unlike other mornings when he takes his time to wake up… He grabbed the balloon, said “thank you!” and rushed downstairs.. I was running after him to tell him that he doesn’t have time to open presents now, as we had to leave very soon to get to an appointment. He turned around and said “I know I just want to check if you got it correctly…. ”  Wow, no pressure.

He peaked carefully in every bag, nodding in approval, and mumbling. .”uhum.. yes.. ok.. yeah..that’s it..” and then he said, “You are missing two..but that’s ok, I love you anyway..” He was about to rush upstairs again to get ready, but I stopped him. I said “Sam, aren’t you going to say something?” “Oh, Thank you!” he said.. And rushed again.

If he were your neurotypical 12 year old,  he would be considered selfish, inconsiderate, bad mannered… But Aspergers and Autistic people don’t think like you and I. And there is nothing wrong with not using the generally accepted rules of courtesy.

The funny thing is, that sometimes, Sam would blow your mind with courtesies – he would introduce his grandmother to people we meet outside of home, he would open the door and hold it for other people, he would ask his tutor how her weekend was, and if she would like something to drink. It inevitably makes me ask myself, whether it’s family members that he considers unworthy of his effort to be courteous. Or is it may be the fact that he thinks, ah well, they know I love them, and they love me, so why should I keep telling and showing them something they already know..

But also, people easily forget that children and adults with Aspergers are not as tuned in to other people’s emotions as neurotipicals are. They don’t understand why they need to say all these niceties when they’ve made a logical request, they’ve calculated everything, they’ve asked you, and you’ve delivered. So the logical thing would be to check if everything is in place, and oh, yeah, some things are missing, but “I Love You Anyway!”

That last statement for me was more than enough to show me that he appreciated the presents and he loves me. I will take anything and understand and encourage him to be more sensitive. But unless I actually give him specific examples, feed him lines in certain situations, he will not voluntarily come up with it. And it’s not something that Sam or any child like him should be punished for, if they don’t do. Their brains are wired differently, and unless caretakers, teachers, parents and relatives, understand this, the children will suffer, and they will not know exactly why. There is no need for the “consequence” route. It will not sink it! It will not have the desired effect, and ultimately it will make them more resentful, because they don’t understand WHY they are being punished!

I love the fact that he built all of his 6 lego kits in less than 5 hours… A task that would probably take me 5 days… And I don’t guarantee success..

He may not be always on the ball with other people’s emotions, but boy, is he focused, smart and skilled!

Happy Birthday Sam!!! I love you too!

–Mom

Rock and Richmond

Have been too busy to blog lately.. One of the reasons is that we made a little 2 day trip to Richmond Virginia. I had to go there for work, and decided to take my mom and Sam along with me. They haven’t been away from the city in a while, and both of them have birthdays this week. So, off we went to the airport to catch an early flight to Richmond. Sam was very excited. He loves traveling and although he may seem at times disconnected from his surroundings and entrenched in his ipad, he sees more than you would give him credit for. We seemed to hit it off right, because as we arrived for check in, they offered to bump us up to First Class. I personally have no preference when it comes to domestic flights.. First or Economy, who cares, it’s an hour flight, and you don’t get anything besides peanuts and pretzels anyway.

Sam was excited though. He plopped himself in 2D window seat, immediately put his headphones on, buckled up, and ordered a juice from the flight attendant. Yep, he is quite the social charmer and knows exactly what he wants and how he wants it. I think this alone puts him in three categories higher than many neurotypical folks and kids, who spend their entire lives, not sure what is it exactly that they want of life. His methodical planning and precise list of needs, wants, goals, and places he wants to see, could make a professional travel agent, or organizational coach, jealous.

We landed in rainy Richmond much earlier than scheduled. Got into a cab and headed towards the city.
As we were driving down the freeway, Vanni says: “Target! We have to go to Target!” Of all things on the side of the road, he notices the bright red Target sign, and of course with his birthday approaching, he was already planning what he wants.
Alas, we didn’t have time to stop at Target, and that was the source of his frustration for several hours that day.
Whenever he gets that upset about something so minuscule, I always try to overanalyze the situation, compare to other similar situations before, was there a Target involved, is it maybe the unfamiliarity of the new place, and the fact that Target feels like home, or is it because he is tired, or hungry.

I ultimately think it’s the familiarity aspect. He likes how Target feels, the sense of order and orientation that the place gives him is probably something that he needs to find equilibrium in his new space.
Note to self: cancel reservations for Kenya safari, Vietnam culinary tour, and the Greek Islands tour.
Somehow, i was able to distract him off of the Target obsession.

It takes incremental bits of patience to move him away from a very strong denominator in his life.
I start by ignoring his pleas to go there. We manage peace for about 5 minutes.
He starts nagging again.

I say:  “Target is very far.”
He says: “NO, I saw it on the way here.”
I say:  “Precisely. .”
You read it and you got it. But for someone like Sam, “Precisely!” as a response, means absolutely nothing! It has no context, it has no additional tangible information, thus no meaning.
I realize that, but I still say it. It takes him by surprise. He is unprepared and now he’s thinking (you can almost hear the wheels turning, and see the thought bubble above his head..)
I’ve scored another 5 minutes of confusion and formulating a comeback.
And he strikes: “We can get a cab, just like we did before. I can even show the driver where it is, because I remember! I saw it.. ”
I saw this one coming..
“Well, we can’t really because by the time a cab comes and we get ready and go there, the store will close..”

At this point, he says “May I use your phone for a minute?” Of course I give it to him. Two minutes later, he turns the phone to me, showing me a map with Target in our vicinity and its opening hours, and victoriously says “No. They will not close until at least 10pm…”

So now, that he’s beaten me on my game, I decide to just stand my ground, no matter what. He was not exactly happy. But it’s a game I’ve decided to play and win this time. As long as I play it cool, and nonchalant, he fizzles out, like a soda bottle you’ve accidentally dropped. Then you let some of the bubbles out, and he’s calm again….  We live, we learn..

We passed the Target test. Onwards with the activities.

I was invited to a film festival, so I took them (My Mom and Sam) along for the red carpet and award ceremonies. My Mom was very happy and enjoyed every film. Sam… actually loved the films! I was so surprised! Every time I’ve tried taking him to the movies before he’s refused, saying it’s too loud, too dark, too fast, too this and too that.. Now suddenly just before his 12th birthday Sam became engaged in documentary films about orphans in Kenya and Uranium-poisoned water in New Mexico, affecting the Navajo Nation. I couldn’t watch the movies so carefully, as I was really observing his reactions and if he follows these stories. And he did, and he commented after every film. It was quite an epiphany that he really IS growing into his skin.

After the festival, we realized we can’t really take a stroll back to the hotel, as it was snowing violently and covering up the ground quite rapidly. We took a cab and decided to stop over for dinner at a nice steak house to celebrate my mom’s birthday which was the day after.

The Tobacco House was unexpectedly lively – full of young people, live music, on three distinct levels and with  great view of the stage downstairs. We enjoyed a beautiful meal, had the cake with a candle and went downstairs to wait for a cab. We were told wait times could exceed an hour, so we cozied up by the fire place and decided to enjoy the live music while waiting.

Sam has picked up guitar recently and is taking lessons once a week. He also knows pretty much every great guitar player in the last 100 years. He recognizes bands, that a child his age or even older, would be clueless about – Black Sabbath, Jimmy Hendrix, Johnny Cash – you get my point..

We are sitting there, and watching how the band is prepping for their appearance on stage. He suddenly walked up to the band by himself and asked one of them if he can have a look at their guitars. They said sure!
One of the guitar players approached us. He asked Sam: “So, you like guitars and rock music?” Sam’s eyes lit up “YES! I do “I immediately jumped to intervene or help him express himself (I know! I should stop doing this!!!!) But he was doing quite fine, and had no need for my help.

“In this case,” he said, “here is a guitar! You can take it to town man! You can jump on it, and break it! Do whatever you want with it…”

“Whoa!” I said “Don’t give him ideas now!”

Aaron (the guitar player) says “No, I mean it! He can have this guitar! It’s my training guitar! And I hope it brings him a recording contract when he grows up!!”

So there, long story short. We went to Richmond and got our Rock&Roll on! 🙂

Now, I’m not sure if it’s because of luck, the crazy weather, one too many beers (for Aaron) or just because he is really a charmer!

Perfect timing with his birthday also!

It’s today!

Happy Birthday SAM!!!

I say potato, you say Angry Birds! or “BEHIND THE CURTAIN”

The Sun was shining straight into his eyes, making him squint and wrinkle up his nose. This half-old, half-baby look gave him an appearance of a wise man who never had interest in keeping up with the time that flowed around him. Like a stone in a river, he just got shinier and smoother, but didn’t engage in the race of the water currents. He looked at me and said, “So, you want to play a game? I know my brother has Angry Birds on his phone, so we can get it on my iPad too and play it!”  But that wasn’t what I had in mind. I wanted to play a word association game.

He looked at me and his first reaction was “Is it on the computer? Do you have a toy with it? Is it on your phone?” “No,” I said. “Oh, so then it will be very boring!”

I can see how a conversation without a device in the middle can be a problem, not only for children on the spectrum, but also to people of all ages. I’ve noticed, (myself included) that there hardly are any more uninterrupted conversations. A quick glance to check if someone messaged me, or to just see the time…

He was apprehensive, but we started anyway. I wanted to find out how far from a word’s meaning he can deviate, so I can try to track his thought process and see what led him to that word.. How Jung-esque of me to attempt to enter my child’s mind, by tricking my way in behind the colorful curtain of his world.

“Potato!” – I said. “Angry Birds!” was his answer. That’s great, I thought! There is an abstract notion and logic that I could go after with some additional questions to find out, what led him from potato to the Angry Birds game. Alas, as our game progressed, I found that his initial response, was simply reiterating his desire to play a game that involved a device, rather than a psychological journey of association.

In this case, I said to myself, let’s go the other way, and say something expected, to see what else he will come up with. So I said “Bird!” “Trees!” he replied.

Me: Bench –  Sam: Chair

Me: Piano – Sam: Harp

Me: Japan – Sam: Tokyo

Me: Elevator – Sam: Escalator

Me: Shopping – Sam: Target

Me: Bullet – Sam: Shotgun

Me: TV – Sam: Video

Me: Boxing – Sam: Figiting

Me: Doves – Sam: Seagulls

Me: Fabric – Sam: Hair

Me: Music – Sam: Notes

Me: Paint – Sam: Colors

Me: Elephants – Sam: Grey

Me: Venus – Sam: Mercury

Me: Books – Sam: Library

Me: Mountains – Sam: Hills

Me: Cheese – Sam: Cheddar (his favorite)

Me: Winter – Sam: Summer

Me: Mexico – Sam: Scandinavia

Me: Desk – Sam: Table

So, needless to say, my Jung-inspired experiment failed. There are only a couple of times when he had an unpredictable answer that shone some light, and brought hope that with practice, this may be a good communication enriching tool. The one kernel of hope is in Fabric-Hair, where I thought he is definitely reaching out of his pre-conditioned self.

Ever since I found out (or rather, accepted the fact) that he is on the spectrum, I have been looking for common ground, for shortcuts, and baits, for his personality and knowledge to come out. When he was a baby, and wasn’t expected to speak, we had most intense “dialogues” with our eyes.  I’d look at him with a thought of a game I want to play with him, or a place i want to take him to, but I wouldn’t verbalize it. And he would look back at me with an expression of “I got it! I’m so excited, I can’t wait! Let’s do it! Let’s go!”  Once, my mother noticed me looking in his direction in that manner, and asked what I was doing. My dad told her “They are talking… Leave them alone!” The connection with him has always been very intense. So much so, that his ability to recognize my emotional status without me telling him anything, was absolutely amazing. There was a time, when I had a lot on mind. So one day, even though I smiled and told him we would go to eat ice cream if he wanted, he sat in the back of the car, and said – “I have the saddest mom in the world.  And I don’t know what to do to help her be happy.”  This of course was at a much later time. He was about 7 or 8 when he made these Yoda-like observations.

Now, at age 12, with a deeper new voice, almost 5.7′ tall, and a bit of facial hair, he seems so much more adult and “proper.”  Together with his baby high-pitched voice, he seems to have sadly lost some of his eccentric, almost clairvoyant ability to read the deepest secret feelings of people..

Given the fact that he is diagnosed with all these disorders (Aspergers, Autism, ADHD, in no particular order of importance), at age 12, his thinking is quite straight forward. Using correlation with an almost mathematical precision,  he moved from one word to the next, conforming carefully to what’s expected to be the “correct” answer.

In a way, although not completely successful, societal norms, have robbed him of his ability to be entirely spontaneous and creative… With some exceptions he provided answers, that in the “real” world will be accepted, in a multiple choice setting. How sad is it, that the most that’s expected of our kids is to make a choice of 3 or 4 answers, with only one considered correct. Well, what if, when left without options for correct answers, children like Sam, as well as the so called “neurotypical” kids, can look beyond what’s already discovered, catalogued, numbered and regurgitated a million times, and actually INVENT something new! What if it’s the 21st century, there is more that we don’t know, rather than what we know. Kids like Sam hold the key to creativity and unconventional ways of achieving goals, shortcuts to success, which we may have long lost, given all the norms and rules we need to follow.

I observe Sam growing up and as much as my concern about what will happen to him as he gets older, is growing proportionally with him, there is a sense of promise. There is also a feeling of security, that he will be ok. In all his corkiness, dorky-ness and naiveté, there shines through, a steadfast determination to achieve and learn whatever stands in his way of knowledge and perfection. He approaches everything with curiosity of a child, the methodical research of a scientist, and the repetition and preparation of an actor. His joy is infectious, his smile is like sunshine and I know, that he will go places. On his terms and on his time…

Not Another Autism Blog…

Welcome to Mom Of Sam’s blog! I believe there are no two children alike. I believe, there are no two children on the spectrum that are alike either.  I believe Autism is NOT a Disease! So no pills are going to make it better. But I also believe, that care, patience, targeted therapies, physical exercise and arts will help a child struggling with social conformity to overcome some difficulties and flourish in the process.

I will not discuss symptoms and medical conditions in this blog. I am leaving this to professionals and medical publications.

I would rather want to focus this to be a home for learning from these wonderful human beings and share with each other what they are teaching us each and every day.

I have long contemplated writing a blog, book, diary, anything, to keep track of my own thoughts, and learning process. For some reason, today is the day that I got inspired, and got over whatever scruples were keeping me from doing it.

There is too much valuable experience that mothers of children on the spectrum learn as they navigate the stormy waters of society, rules, preconceived notions, judgments, and criticism. If we only learn to listen, they will show us what the best options for them are, what the best foods for them are, and how to help them stand up when they fall. They know it – we are the ones that have to learn to understand their language.

After all this time, I realized it’s not fair – neither  to my son, nor to myself to keep this knowledge and experience I’ve acquired over the years to myself.

In this blog, I will publish in chunks whatever I have learned. I don’t promise that it will always make sense. It may be convoluted, ambiguous, emotional, full of typos, forgotten hyperlinks, and many more mistakes. But I am learning from Sam – I am letting go of my inhibitions, and concerns that it may not be what’s expected, and throwing it all in here.

I will also include practical experiences, from teaching him techniques to conquer overwhelming emotions, to games with educational purposes, to figuring out systems of education, laws that help, good and bad approaches to things we’ve tried to change..

However, this will NOT be a place for strong inflammatory statements and opinions, political disagreements, partisan positions on the diagnosis of autism, bashing and calling out names of officials, and/or any regular people.

What I’ve experienced and described here may be contrary to your experience and your belief system. In this case, just don’t read it any more. Please don’t insult me, my child, or anyone else who is posting here.

For anyone who is disagreeing with what I say – happy to answer any concerns which are worded in a civil and respectful manner.

For anyone who wants to join me and use this as a platform for their experience – let’s talk! Would love to have guest bloggers!

For anyone who is plain visiting – you are welcome to come back any time.

Please give suggestions, feedback, and/or anything you may think of as useful to further the message of our amazing children.

The road is steep and narrow and has many obstacles, but it’s always better navigated and more fun with someone by your side.

I’d love to hear from you!

Grateful I am,

–Mom of Sam!