What “normal” people don’t get or the Joy of Autism

I found this article online because one of the trainers Ezra had in our Son-Rise intensive at the Autism Treatment Center of America posted it on facebook. I have no idea if I’m allowed to re-post the article in its entirety. I wanted to pick and choose some excellent quotes, but frankly it is just excellent all together. I will certainly take it down if it is not allowed, so contact me if I’m breaking some law here. The author is Julia Bascom. It is so beautifully written and offers insight into autism that can only come from an autistic persons perspective. it helps me rethink some things I say and do, and reminds me to be more accepting and loving.

THE OBSESSIVE JOY OF AUTISM, by Julia Bascom

“I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to beincredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are: sudoku and GleeI am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now. It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Gleein any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”.

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happyso enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?”

 

Screaming, tantrums, and aggression

Ezra has been going through a phase of increased screaming, and aggression, and decreased flexibility. He is starting to throw tantrums again. Sometimes I think it is related to the full moon. He seems to scream more during the full moon times. His granny used to work in a home for severely handicapped people, and she said that during full moon the residents seem to all be on edge, verbal, and violent. He has made so much progress in many ways, but right now we hope that the increased vocal outbursts, the pinching, spitting, and hitting, are a sign growth rather than regression. We noticed that whenever he is making strides in one area, he has a huge shut down, where everything goes back to before and it seems as if all progress has been extinguished. I would be lying if I didn’t admit that those moments are scary and unsettling, and I think…what now? Where do I go from here? But I try to have faith in the training I got in the Autism Treatment Center where they taught us that when the brain grows it’s like downloading new software to a computer. In order for it to work, you have to restart the computer, and during that time you can’t do anything but wait patiently until it’s rebooted, and then you enjoy your newer high speed computer application. So that’s what I hope for. That’s what I want to believe in.

Ezra has become more aware of other children. The other day Micah had his first real school friend over to play. Ezra wanted very badly for that friend to be his friend too. He craves friendship, but doesn’t know how to go about it. He can’t really converse well in English or Dutch. On the playground he sees other kids playing together, and he wants to take part. It is exciting and difficult at the same time to see him want to interact, and knowing how far he still has to go to have a normal relationship. He now speaks a bit of Dutch, but not enough to truly converse. He speaks too loud and in a strange voice, so whether it was proper Dutch or not, anyone could tell that he’s different. The other day I was a ways off on the playground and turned around to check on Ezra who was on the swings, and saw that two older boys had started harassing him. I walked over there and sorted out the situation with a look that put the kids in place. No need for words. Kids speak back to him, but he doesn’t yet understand. During those times I feel guilty and helpless for living here, in a country where he can’t possibly make local friends in our community. If I had the money I would immediately move across the border to Germany where there are lots of kids from our ward who speak English, and then I would send him to the international school. Still, despite everything it is exciting to see him grow in his desire to interact.

Update overdue!

Today is October 22, 2011. It has been 5 months since my last entry on this website. There is a reason for my long silence and failure to update. The first one is pretty trivial. I didn’t like the design of our site anymore and have been looking for a new one. The second reason is that I’ve actually been primarily using my other blog Vanessa’s Vignettes to update, because I wanted to change the content of this blog a bit from describing my experience as a parent to cataloguing Ezra’s progress. And the third reason is that I was simply too discouraged and overwhelmed to blog. Our Son-Rise program totally flatlined. But now in the meanwhile loads of things have happened and we will hopefully be back up and running very soon.

So where to start? The last entry was about the fact that there was no school in sight for Ezra. Well, in the meanwhile we have found a school for him. He had an IQ test done which showed two things, first that Ezra’s IQ is supposedly 67, and second that the IQ of an autistic child can really not be measured by locking him up in a room alone with a clueless stranger he’s never met for two hours, testing him as if he were a normal child, trying to get him to do things he finds boring. Yeah, good luck with that. So anyway, his super low IQ “qualified” him for a different type of school for the severely mentally and physically handicapped (they call that cluster 3 here). Ironically he was classified for cluster 4 which is for kids with ADHD and autism, but no school accepted him. They looked only at his score on the paper. It blows my mind that the government can give him funding and a referral and the school can simply say: er…no thanks, he looks too stupid for our school!!!

ANYWAY, I met with the psychologist of his current school. She looked at his papers and asked “So what’s wrong with your child that no one wants to take him?” My reply was simply  that no one ever bothered to meet him. They were the very first to say, OK, well first let’s have him come to the school, so we can see who he is! I felt like doing a halleluja dance, and hugging her. To shorten this long story, they saw what we always knew, which is that Ezra is totally adorable, and super smart. They offered to help him if no one else would, and no one else did, so here we are. Ezra is loving his new school experience. He gets a catered individual program to fit his capabilities which are far beyond his class mates.  The head psychologist of the school also told me after a few weeks that the IQ test was completely ridiculous and in no way showed Ezra’s personality or ability. HA!!! Not only that but Ezra, who everyone predicted wouldn’t learn Dutch, is soaking up the language like a sponge and within three weeks came home speaking Dutch. Is it perfect? No, but give him another 6 months! Is this school the ideal scenario? No. Ideally he would be in an English speaking school with kids that are typically developing so he can model them, instead of coming home modeling spitting, aggression, and vocal isms from the other severely autistic child (who I wish could also have a son-rise program). But the thing about this school is that the teachers treat him as smart and celebrate his successes, instead of cutting him down. I can’t say enough good things about his teachers and psychologists there. They are so kind, and totally awesome. I’m really grateful Ezra gets to go there.

We also have started the GAPS diet with Ezra and Micah. So far the main success we have seen is that they eat a greater variety of healthy foods, whereas before they ate mainly carbs. We are doing it mainly to heal his stomach lining which is damaged and can’t absorb nutrients right. Ultimately it should diminish his ADHD and autism symptoms as well. So far we haven’t seen any dimming in hyperactivity though.

Now to Son-Rise. Oh, how I love it. However, you read my blog about volunteers. Thanks to our totally fantastic MEE worker we now have funding to pay workers to come and do Son-Rise. We’ve given up on volunteers. This is just not really part of the Dutch culture, because they pay so many taxes, and expect the government to take care of needs like ours. But I’m not going to get into that now. We will be putting out adds in the newspaper to look for people.
Check back with us here for updates. I will do my best to keep updates to Ezra’s progress, and put my parenting journey on my blog.

No school in sight!

I had another meeting yesterday with the person from the municipality responsible for finding Ezra a school, and a MEE worker. MEE is an organization who is there to help parents find the help they need for their children. Last Monday Ezra had another IQ test done. We are still waiting on the results. This one was done in English. He was in the testing room for two hours. He had to take a break and play for a while, but he made it through it in amazing form. The woman administering the test, had no idea how miraculous it was for him to sit still for two hours and just work. He has ADHD and autism, so sitting still is a challenge in and of itself. When I have some more time I’ll write a blog post about the uselessness of standardized IQ tests for autistic children, but for now I’ll leave the topic.
Either way the outcome of the meeting was that there is no school for Ezra now, and if the Rungraaf (that special needs school) doesn’t feel like they want to take him or can help him, then there is nothing we can do to force them. So essentially I’m coming up blank here. There is another International school in Brunssum, which perhaps could admit him if he had an IEP and if we could manage to scrape up 18,400 euros somehow. We can’t pay that ourselves, as we barely make ends meet as it is. I don’t really know what to do from here on. I’ll take suggestions if you have them.

April update

Has another month really passed since my last post?
Perhaps I’ll update the site more with little achievements so that you don’t have to read an entire chapter every time you log on. I’ll spare you the flowery language. Here it is. I don’t want to call it good or bad, so I’ll let you decide what you make of it.

April 9: Ezra is going through a really exclusive phase. He is screaming a lot again. He is very aggressive, hurts Micah, is inflexible, and exclusive. He is so hyperactive that his attention span has shrunk back down from 10 minutes to 5 seconds. He has however retained his ability to speak in sentences. I have five possible reasons for this development.

  1. Lack of protein in his diet which exacerbates his ADHD (he used to get eggs for breakfast) and possibly stronger reaction to nitrites and fats in the Salami he has been eating.
  2. Lack of time in the playroom because volunteers cancel
  3. Stressful environment and lack of sleep
  4. Normal part of his growth which goes two steps forward and one and a half steps back
  5. Who the heck knows. I don’t. Could be anything really


April 8: We have only two volunteers. One of them will quit by summer (because her mandatory volunteer hours from school are up), and the other one will do an internship and will also be gone, so as of now we have no volunteers for 2 months from now.

April 4: Our re-application for PGB was approved and we will now get a small amount of PGB for a year. If I can find people to work for 10 Euros an hour then I could possibly run a full time program. At the meeting Ezra for the first time uttered an appropriate goodbye, shook a hand that was extended to him while looking into that person’s eyes.

March 24: At a meeting with all the school boards and psychologists they determined they couldn’t find a school for him here because he fits no category. They determined to meet again some other time in a month or two when they have thought about it.

March 23: Their blood tests for food intolerances showed that between Micah and Ezra there is  little left they WILL eat. They could eat meat,vegetables, and selected fruits, but Ezra is extremely exclusive and inflexible right now, and has reverted to screaming, throwing food, and can’t sit at the table for more than 2 min without jumping up, going outside, and bouncing around. I need to meet with a dietitian to figure out what I can give them so they have adequate nutrition. They have to avoid gluten, casein, buckwheat, eggs, nuts, vanilla, and coconut for 12 weeks (Micah white potatoes, Ezra brown rice). Ezra also has to avoid all acidic fruits. They can still eat corn…for now.

18 months of banging my head against walls

Typically I prefer to write about Ezra’s progress and the good things that happen. It’s more uplifting and inspiring to read about how things are working out. It also helps me focus on the positive. You might have noticed that since my second to last post (BEST DAY EVER), I have hardly posted. That is because unfortunately most of our volunteers quit out of personal reasons, ranging from new job to pregnancy. So not only have I been trying to find a school for Ezra here in the Netherlands, I’ve also had to run the program with just 3 volunteers, and do most of the work myself. In the last six weeks we have tried to find Ezra a school here, and we’ve come up blank. The following is an account of what we’ve done since coming to the Netherlands 18 months ago (actually 2 months by now). Remember that as you read, I’m not being negative. I’m just stating things as they are. This post is intended to give you insight into how judging a child by a label (like Autism, ADHD, American, IQ 75) can curtail his future, and leave him to fend for himself. I posted this on my other blog.

Here is an overview of my battle with the Dutch windmills of bureaucracy:

First let me explain that there is something called PGB. It’s a type of assistance the government provides to those with special needs, whose needs aren’t covered by health insurance. Health insurance is supposed to cover speech therapy and physio therapy. It does not however cover occupational therapy more than 10 hours per year. To effectively treat the sensory integration problem that underlies most autism ideally you would get at least one hour a week if not every day, for 2-3 years. So this is something you could use the PGB for, if it is obvious you need it. PGB also covers physical help at home if you’re handicapped, group therapy, parent respite in form of weekend camps for their handicapped children, etc.

Here is a chronology of the help I’ve been trying to get for Ezra:

2009
August
Calling International School, Therapists, etc. No answer until September when school is in.

September
Finally get people on the phone. Make appointments 2 weeks to 3 months from now for initial intake. Then you get an appointment after that 3 weeks later to see if you can get help (therapies etc.)
International school says: “we don’t want a child with problems.”
I get an appointment with Bureau Jeugdzorg (youth office) responsible for giving the diagnosis of help. I explain exactly what I want, and that I need PGB in order to do the Floortime therapy as prescribed by Dr. Greenspan.

October
Ezra starts school at Tomteboe, what I thought was a school for special needs children with Autism.

November
Still haven’t found a speech therapist who can work in English. Start work with an occupational therapist.

December
Ezra leaves home at 8 am and comes home at 4 pm on the taxi every day totally overwhelmed and either cries for hours or obsesses over the DVD player (i.e. pushing DVD’s in and out).
I visit him in school. They aren’t doing anything I asked them to do. Ezra is completely bored and overloaded by the chaos and noise of the classroom (although there are only 10 students). They don’t speak to him in English. I learn that they really aren’t a school, but a medical baby sitting service. Kids get put in there to find out what school they should go to after this. What they call treatment doesn’t look any different from Micah’s typical playgroup, just less kids, and a visual schedule. Still no therapies for Ezra at the school. They said they first have to observe him for 6 months to determine if he needs therapy (despite having a detailed treatment plan from the foremost authorities on childhood developmental delays, and the treatment plans and evaluation of his former speech & occupational therapists).

2010
January
I finally get the translation from the indication from Bureau Jeugdzorg. They say we won’t get PGB, because Tomteboe is all he needs. We arrange for an interview with the school leaders. Together we agree that it isn’t working, and they said: Ezra is too autistic for this place. We can’t help him. I determine to take Ezra out of school by March.
I attend the son-rise Start up in the UK, and learn about the Son-Rise program. First time I see some hope.

February
Ezra is out of school at 1 pm every day. He’s doing better. Final meeting with Tomteboe and B.S. from bureau jeugdzorg. She gives me the absolute smallest amount of PGB, because I don’t want Ezra in that “school”.

The main problem is that Dutch people don’t know how to treat autism according to me, and they certainly don’t believe that you can recover from it. They are so far behind in their research. Everything in this country goes slowly and with a lot of paperwork. They still think that Autism is a psychological disorder, and wait to diagnose it until they’re older. In fact many of these special needs schools for kids with Autism don’t start until the kids are six years old or even older. To me that doesn’t make any sense in light of all the research proving that early intervention is critical.  I’ve even had them tell me that if you wait it out it gets better. Well it doesn’t, and there are loads of accredited studies that prove that. Early intervention is crucial!

March
We start our son-rise program at home. Life seems great. Micah is now going to playgroup every morning.

April-June
Things are looking up. We don’t have a lot of volunteers, and aren’t terribly good at the program, but progress is being made.

July
I finally get the PGB that they promised in February. Six weeks later I get the translation of the paperwork. It states that if I want to complain I have to do it within six weeks. Great. After talking to my friends, I learn that they get thousands of Euros in PGB for their programs, and we got barely enough to cover anything. SCREWED, but, oops too late to complain.

July-September
All volunteers go on vacation, and Micah and Ezra are home together all day. Ezra becomes aggressive and starts to hit/bite/pinch make Micah scream non stop. Micah goes from happy camper to crying, screaming teasing all the time.

October
Things are getting more difficult between Micah and Ezra. It’s constant fighting. I get the local authority to clear Ezra from obligatory school. He’s excited about the Son-Rise program and impressed by what it accomplished. He also says that doing this program saves the government at least 17,000 Euros a year in schooling costs for Ezra.

November-December
Hire a professional to fill out our forms to reapply for PGB, because it’s up January 16, 2011.
AWBZ tells me I need to have an indication from them to get special budget. I fill out a form, and they return it to me saying that Bureau Jeugdzorg needs to give me the indication as Ezra is under aged. I fill it out and Bureau Jeugdzorg says CIZ is responsible. I call CIZ and they say AWBZ is responsible for giving me the indication. WTF? So finally I fill out the form, give it to Bureau Jeugdzorg, and they tell me that because Ezra’s IQ is so low I have to send it to CIZ. Oh good!

2011
January
After numerous calls to CIZ, I finally get a response around the 10th. I get an extremely unfriendly, defensive person on the phone. She denies my case, saying that because I don’t send Ezra to school we have no right to help. I can appeal however within the first six weeks. Hurray! Of course it takes months to process it.
I call International school pleading with them to take Ezra. They again deny him, saying he wouldn’t be able to function in a normal classroom setting (and they’re right). I call the special needs school central to see if the local special needs school could take Ezra half days or at least give me written proof that I tried to put him in school and was denied. They explain that he first has to go to a normal school for six months so they can find out if he qualifies for normal school with assistance. Have I mentioned: he has a speech delay, doesn’t speak a lick of Dutch, and has ADHD and autism? OK, so I’m promised that they will call me back, which in my experience is equal to: “Don’t call me. I’ll call you!” So I call them again. This was our conversation:
M: It will be very difficult to get an indication for Ezra to go to a cluster 4 school

They have normal schools, and then special needs schools: Cluster 1-4. 2 is for communication difficulties, and 4 is for behavior challenges like autism).

M: He wouldn’t be able to function in a classroom there because there are too many students. You should put him in Tomteboe for two days a week.
Me: I asked them to do that, but they said it would be too disruptive to their process.
M: They wouldn’t be able to do son-rise program with him school.
Me: Yes, I realize that, but CIZ needs me to prove that I’ve tried putting him in school. I don’t think it’s the best thing for him, but they’re not interested what’s best for him, only what fits their definitions.
M: Perhaps you could put him in the International school.
Me: I’ve tried twice. They said no. We’re only here for another 18 months, so I really would rather have him speak English, because he doesn’t understand Dutch, and it would delay his speech even further.
M: A.O. from Tomteboe told me he had communication problems. He should try a Cluster 2 school.
Me: You can only get an indication for a cluster 2 school if you have six months reports from a speech therapist which we don’t have, because we couldn’t find a speech therapist in the Netherlands who speaks English.
M: But coming to a Cluster 4 school wouldn’t help his language. They speak Dutch. He wouldn’t be able to integrate there.
Me: I KNOW! That’s why I’m running a son-rise program at home.
M: OK, how much PGB do you get?
Me: None.
M: What do you mean none?
Me: I mean, the Dutch government specifically CIZ isn’t giving me any PGB, because they say I chose to keep him at home.
M: But where can you send him?
Me: Nowhere, that’s the point. The only English speaking school in the Netherlands for autistic children is in The Hague and costs 18,000 Euros a year.
M: Can’t CIZ give you the money for that to cover it?
Me: Nope, I tried.
M: I’ll help you get an indication for a Cluster 4 school.

February

Our Son-Rise program goes from 8 to 3.5 volunteers, and I spend a lot of time filling out forms, calling people, visiting schools, to try and find a school for Ezra. I call all schools. International said no again, Cluster 3 won’t take him because he’s not physically handicapped, Cluster 2 won’t take him because he has no speech therapy reports, Cluster 1 doesn’t apply because he’s not blind. Montessori school said no, and the regular Dutch schools rightfully point out that he wouldn’t be able to function in that classroom.

March

Had another meeting with the person responsible from the community to find a placement for Ezra in a school, and he after 6 weeks work, couldn’t find one either. The special needs school in our community said that Ezra’s IQ was 5 points too low, so they won’t take him.

I’m not sure what to do now. I’ve tried it all.

TROETELS, and The Magic of Motivation

What on earth are Troetels? Click on the link and find out.

They are these tiny little fuzzy animals that you get when you go shopping at a certain store here in the Netherlands. For some reason Ezra totally loves them. They have done amazing things for our family. One of Ezra’s biggest challenges with autism is of course that he doesn’t want to interact with others, and thanks to his ADHD if he does interact it’s for a  very limited time. His attention span is maybe 5 minutes (typical is 5 min per year of child, so he should be able to concentrate for 25-30 minutes). I still remember the time where he held toys for less than a second, before moving on to the next thing. Since the Troetels came along however, he has developed the ability to sit down and just play with them in various ways. True, for the most part he just lines them up. There is this new game however that he loves to play. I sit somewhere in either his bedroom, playroom or living room, and chuck/hide the Troetel somewhere while he closes his eyes. After I hide it he opens his eyes and asks me where it is, and I give him clues as to where to find them. He will play with me for as long as I am willing to play. This is just the most amazing development. My autistic boy is wearing me out, wanting to interact with me all the time, to the point where I have to say: you know what, I need a break! It’s just incredible, how motivated he is by these little creatures.

The risk here is of course that one can get tired of playing these repetitious games with him. I however see those Troetels as the greatest key to Ezra’s learning: MOTIVATION. And more than that it is a doorway into his world. If a child has fun doing something, if he/she is motivated, then it isn’t work at all. Learning becomes easy, and interacting becomes fun.

Here are just a couple of ideas of how I’ve built in things I want to teach Ezra with this one game of hiding troetels.

Variation 1

Goal: following complex directions. I give him hints in varying degrees of difficulty.

  • Easy: It’s next to the red ball
  • Medium: It’s next to something red and plastic
  • Hard: It’s lying next to something that is plastic
  • Harder: It’s on a flat surface between something round and something made of concrete
  • Harder still: It’s next to something that I could use to knock over bowling pins

Variation 2

Goal: Taking turns

Taking turns is still a challenge for him. I try to have him throw the Troetels so I can go find them, but he usually runs to them himself. In this variation we can teach how to wait.

Variation 3

Goal: Asking simple questions/Answering simple questions

Ezra has only just learned how to ask questions. In this variation we would play like a 20 questions game, where the person hiding them gets to answer yes or no, and he, who is looking for the hidden troetels could ask simple questions like

  • Is it on the bed?
  • Is it on something red?
  • Is it next to the window?
  • Is it behind the curtain? etc…

This is a huge challenge for Ezra and with this game alone we would really make a huge leap in development.

Variation 4

Goal: whatever you want. For example, right now I’m working on teaching Ezra how to greet others and say goodbye. It’s not as easy as it sounds. It has to be said loud enough for them to hear, we have to figure out if it’s hello or goodbye, hi or see you later, etc. Handshakes need to be firm, we have to look the person in the eye, but from an appropriate distance, and not get freaked out by someone else touching our hand etc.

So, I play the game exactly the way he wants to play it, to keep his motivation up, and then before I do what he really wants me to do (which is hide the Troetel), I ask him to do a greeting, shake my hand and look into my eyes.

Variation 5

Goal: Peer play, turn taking

Simple. I just add Micah, and have them take turns.

Variation 6

Goal: Translate what you hear into spacial awareness

Version one: Play hot and cold game. Say warm when he approaches the troetel, and cold when he moves away from it.
Version two: Have him listen closely when he closes his eyes, so he can locate the Troetel just by hearing where it has been thrown.

Those were just a few variations on what I do with the Troetels in that one hiding game he likes to play. Of course there are so many other games I can play, using this motivation. Just a couple of examples:

  1. Use the Troetels as figurines in typical board games. GOAL: Turn taking, playing a board game
  2. Make several cards with formations on them. Take turns lining up troetels under time pressure. GOAL: Lengthen interactive attention span, reproducing a visual cue, turn taking. Motivation: lining up troetels, seeing a timer count down.
  3. Troetel basketball. Throw troetels in a basket from varying distances. Goal: physical participation, hand-eye coordination, turn taking, interactive attention span
  4. Troetel Math lesson: Have the troetels be the math objects, or pretend play math lesson
  5. Troetel pretend play. Create stories using the troetels.
  6. Imaginative play: if you want to play pilot, or zoo keeper, or tourist, whatever, just incorporate the troetels.

I could go on and on. Perhaps you’re wondering, but shouldn’t he be able to play with other toys too? Shouldn’t we encourage him to branch out? Surely such fixation isn’t healthy. The answer is of course: Yes, he should be able to, and yes we can encourage him, but the point is, he is autistic and isn’t able to do a lot of things that other kids can. And of course we encourage him, but we use whatever he is motivated by to include ourselves into his repetitious games. Our ultimate goal, and the goal of the Son-Rise program is to teach him: humans are fun to play with. WE are the most interesting toys! It feels good to be a part of this world.  When an autistic child learns to want to interact, not because he has to, not because we expect or want him to, not because he is less human if he doesn’t or he’ll be judged, but simply because it’s fun and it feels good, then he is on the way to recovery. And that is what we have been seeing more and more, thanks to these little troetels.

Best Day EVER

There can be miracles, when you believe. That’s one of Micah’s favorite songs. It would be my theme-song for the day, even though it probably would be on the cheesy side.

Today was the first day EVER, since we had Ezra in the playroom all day from 9am – 5 pm. The difference was just incredible. Let me rephrase:

THIS DAY WAS SO INCREDIBLY AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!

When Ezra was in the Son-Rise intensive in the playroom from 8-6 all day, we saw a different child. The shackles of his handicap started to fall away, and for the first time we got a glimpse of who Ezra really is. And his soul is so beautiful. I found this image online and I think it sort of shows what I mean.

He would talk with us, was calm, affectionate, sweet, never screamed, yelled or barked. When we returned to Europe he immediately went back to screaming, jumping around, contorting himself in strange positions, and 80% of the time I wondered if I had given birth to a 50 lbs yapping poodle, because he pretends to be a dog. Micah, his little brother, does what little brother’s do best, which is love their bigger brother to tears, by annoying Ezra until he screams/cries/yells/punches. Ezra was constantly overloaded with Micah’s teasing that it was pretty much nothing but screaming in our home. For you who are curious if I’m making this up or exaggerating, here is an audio feed taken with my iPod at 6:30 am some other day. He wakes up every morning at 5 and starts screaming until we all wake up. And then arguing begins.

So how was today different?
In one word: peaceful. There was no screaming, tantrum, or fights. A peaceful lunch for him in the playroom with Kelly, while mommy and Micah ate in the dining room. No fighting to get my attentions after lunch, instead, he was in the playroom being loved, and inspired to interact. And as a bonus, Micah for once was not left being spectator to the parade of lovely people passing through our house, all coming to play with Ezra, not with him, but had my full attention. After all the sessions were over, Ezra was so exhausted, that his handicap again seemed to fall away. He was calm, clear, reacted to what I said, looked me in the eyes when he asked for more food, and even asked me for hugs twice during dinner, which never happens. His brain burned so many calories making new connections, that he ate more than I’ve ever seen him eat before. And I can’t say enough, how amazing it was to see him eat. This is the child whom I couldn’t serve anything but potatoes, pasta, and rice to, without him having a screaming tantrum, who would skip meals for as long as it would take until I gave him his potatoes. I remember the times when he would throw food across the table, and cry for an hour if I just put a piece of chicken near his plate, not to mention something of the color green. I dreaded mealtimes more than any other time of day, because of the fight I knew would ensue. Tonight he ate everything: fruit, cranberry sauce, potatoes, chicken, and even the salad!!! (For my exact dinner strategy to get picky eater to eat, read here).

What does eating have to do with the playroom? He was mentally so exhausted from making connections, that his brain was finally at rest. He spoke so clearly, explained what he wanted and didn’t want, and when I spoke to him he responded immediately. It was truly incredible.

What made the difference? Four letters: L., K., J., and S. (I abbreviated their names, because I haven’t spoken to them about permission to publish their names). They went into the playroom with Ezra and loved, and encouraged him. The results showed! These women are part of our Team Ezra, and today wasn’t a single effort. It was a cumulative effect of everyone who ever passed through our playroom. Every time someone goes into the room with him we see the repercussions, and I can’t help but hope that many more volunteers sign up, so we can see results like this every day. I have no doubt that if we did that he would be able to attend school full time end of this year, as an equal, not as a handicapped boy.

These four women today,  have busy lives, and their own fair share of hardships and setbacks. L. is a mother of five, with an incredibly tight schedule and autistic son of her own. Still she made time for Ezra. K. showed up limping with two crutches and an indomitable spirit, despite being in incredible pain because of a sport injury. J. left her adorable one year old girl at home with daddy to show up in full face paint, and spent half an hour drawing rainbows and planets on Ezra’s arm, and S. came despite a difficult personal setback, and came out of her session radiant. They together with our other team members represent the best of the world to Ezra, right there in his playroom. They show him how even despite personal challenges, we can chose to be happy, we can chose how we want to feel, and we can be there for others. They not only inspire Ezra, they inspire me, to want to be a better person. I feel so blessed to have them in mine and Ezra’s life, for however long they stay.

This post is dedicated to you, volunteers. You are amazing. You’re blessing our lives so much. Thank you!

Our Miracle Moment

What you have to understand about this video is that to us this is nothing short of a miracle. Most people think of miracles as things they have no explanation for, amazing feats that don’t seem possible for humans to accomplish, something that defies their logic, or in my opinion, defies their knowledge of laws and principles they have yet to discover. My four year old walks up to a computer at the airport and touches the screen to make it move, and is surprised to see that it’s not touch screen. 30 years ago touch screens and small devices with which to communicate with someone far away were the stuff of crazy writer’s imagination. Our kids take for granted that we can just get on an airplane to fly across the northern Hemisphere to visit family 8000 miles away, all within the same 24 hours. I even take flying for granted. I’m quite certain that if someone who lived even only 500 years ago could see this, he would consider it a miracle, an impossible feat. As long as we can explain it doesn’t seem all that miraculous, like flying for example: after all we understand the laws of aerodynamics, and we know how to manipulate the elements to manufacture parts with which to make an airplane. Perhaps one day we will understand the workings of the mind better than we do now, and the following video will seem just the result of hard work and good treatment rather than the miracle it is to us.

10 months ago Ezra spoke only in one – two word sentences. He made no eye contact. He couldn’t answer a question. He wouldn’t interact with us really. He couldn’t sit still long enough to do anything, let alone read a book. All he would do is flip through the pages. If you touched his book he would scream and recoil. He didn’t answer questions, and he certainly couldn’t ask any. Then when he became more aware of his surroundings, he started being violent towards Micah: pinch, bite, push, kick, hit, shove, annoy in any way possible, just to get him to scream and cry, only to then run away and laugh, and come back for more, all day, every day!

So with this in mind, would you not also call this a miracle? And how do we explain this miracle? The Son-Rise program, and what it stands for: love, and acceptance. Love is the only power that grows by sharing it with others. If anything or anyone is to change for good, it is through love, and a belief that people can change.

Interact versus entertain

In the last couple of training sessions I have noticed a theme that has come up amongst our volunteers, and that is the thought that they feel responsible for entertaining Ezra. Often times this concern comes after a session where the volunteer expressed not having a very good time.
Autistic children are in fact masters at entertaining themselves. That’s exactly the problem! They are totally content in their own world. We might think it mind-numbing to bark like a dog for an hour, jump around in patterns, flip through pages of a book just to read the numbers over and over, draw planets for months, but they are happy, completely and utterly absorbed in their activities to the exclusion of the entire world.
I can see how the issue might be confusing. When Ezra is ready to interact with us, and we get green lights from him, we absolutely attempt to lengthen his interaction with us by being as entertaining as possible. Being entertaining and entertaining are two different things though. When we go into the playroom expecting to entertain Ezra we really pressure him to be entertained. We judge whether or not we are entertaining by his reaction. If he looks bored, we interpret that as we’re boring. If he doesn’t want to play the game we brought, it’s because it was boring, and so we judge ourselves, because Ezra isn’t responding. In my experience whatever we accuse others of, we probably don’t like about ourselves. When I hear someone say, he wasn’t entertained, or I can’t come up with enough to entertain him, I suspect one of two beliefs at the heart of the problem:

a) I don’t think I’m entertaining or fun, or

b) I think Ezra’s games are boring, and I’m not entertained.

It could be either one of those. So essentially when we go in with the attitude: I have to entertain him, you’re really saying: Ezra has to stop acting autistic, interact with me, and play my game, for me to feel good about myself and my game.
If we however go in with the intention to BE entertaining and have fun no matter what Ezra does, and if we adopt the belief -I am so much fun that eventually he won’t be able to resist me-, we free up all the pressure we create for ourselves and Ezra, because we have already decided that we are going to have a good time. We no longer need to prove something, or have to “make” something happen or “get” him to talk to us. It is true simply because we believe it. Those are the sessions when I see volunteers come out with excitement glowing in their eyes and the question has-it-been-two-hours-already?

What we want is for Ezra to want to interact. The key in teaching him how to want to interact, is by giving him control. Leave it up to him, and then when he gives us green lights that he’s ready for interaction, we are there: ultra user-friendly, fun, pressure free, accepting, loving, silly, hilarious, you name it. The most entertaining game we can show him is how much fun human beings are, and how much fun it is to play with one of them, versus focusing on their names, birth dates, and license plate numbers.