Considering the Son-Rise program?

July 15, 2011. I got an email from a good friend working at the Autism Treatment Center saying that my blog was one of the top blogs that popped up when googling the Son-Rise program. He also informed me that a person quoted my headline from a previous post “My beef with the Son-Rise program” dated May 1, 2011 as reason for not attending. I wish I could get that person on the phone and tell her to actually read my blog post and look at our website not just draw conclusions based on the headline. In response to this email I would like to set the record straight. Here is an email to this person and to all you who will read my blog post about our challenges, which after much deliberation I’ve decided to let stand.

Dear Reader,

there are a lot of ways you can educate and help your autistic child, and not every approach works for every child. So many different therapies you can do, and in the end all will help in some way. The only wrong thing to do is nothing. Any interaction will help your child’s brain grow. However, I found the Son-Rise program is the only program that was really created for the parent. It is the only program that will give you hope, that will teach you how to love, understand, and believe in your child, even if he never changes. Spending a week at the Autism Treatment Center is like getting an oil change for your car. It borders on essential to make that 5000 mile journey ahead of you without your engine breaking down. As you see in below post, I let my engine break down (my beliefs not serving me), and guess what? My personal family counselor at the Autism Treatment Center found my blog post, saw we needed help and called us. That’s how awesome they are. I wish I could spend a week with them every 3 months just to recharge. The Son-Rise program is the BEST thing that ever happened to our family, as a married couple and especially to Ezra. The staff at the Autism Treatment Center are extremely helpful, loving, enthusiastic, and awesome. Afterwards you feel so refreshed, pumped, and like you could conquer the world.

Yes, it’s hard to run the program when you don’t have volunteers.  But how much easier is it to cough up $75,000 for one year tuition at an Autism school? And in my post below you can see just exactly how hard it can be, but please understand that our situation is also very different and unique. We live in the Netherlands. Our family isn’t close, we have like three friends, and are navigating not only through a foreign country and bureaucracy, but especially a culture that couldn’t be more different to America. They don’t believe in customer service, volunteer service, or any service really. NO ONE works for free. The Dutch culture is a very frugal one, they pride themselves of being excellent budget keepers, and bargain hunters. On the other hand, things are also quite expensive here. I find I have to work part time just to make ends meet.
Essentially the people who really want to work with autistic children here have made it a job, and get paid through what is called the PGB (personen gebondene budget) which basically means a personal allowance from the government to pay for the kind of care not covered by school or health insurance. Every single full time Son-Rise family that I’m in touch with in the Netherlands says they get about 45,000 Euros a year for therapy, and they use it to pay people to work with their children. We didn’t get that money, until recently (and then only about a third of what others got). Thus my frustration below. However, if you read this post right, you will see why I’m so desperate to make it work. The Son-Rise program is so awesome for Ezra, I put up with all the bureaucratic crap they threw at me, and fought off authorities in every way, so I can keep a Son-Rise program for Ezra. Yes, it’s that good, and yes it’s worth all the trouble. So go ahead. Read about my challenges, and know that most of the challenges you experience will come from your beliefs, as I recognize mine do as well. But, you know what? It can be a challenge to run any program for autism. At least with the Son-Rise you see results that will matter in a relationship way, and you really grow to love and understand your child. I know a friend of mine who took out a second mortgage on her house to pay for an ABA therapist for her son, and according to her account, they quit, and although he can sort of keep up in school he has no friends. So, after some deliberation I’ve decided to leave the following post up. If you’ve read this letter, it will show you that in the end challenges are just stepping stones. Either way you grow. And to end with a quote from Barry Neil Kaufman himself:

“It’s not the endings that matter but about what each of us is willing to do and actually does. It’s not about perfect outcomes or predictable conclusions. It’s about love. It’s about stepping out. It’s about expressing ourselves, as imperfectly as that might be, because we decide we want to contribute and make a difference.”

I don’t want to be the reason someone decides not to do the Son-Rise program. So go ahead. It will be the best thing you ever do. You won’t ever regret it.

Love, Vanessa

For more reasons why to do the Son-Rise program, read what I wrote on my other two posts on my personal blog:

Post: What to do when you suspect or know your child is autistic
Post: Call the Son-Rise Program Immediately

ORIGINAL POST, “My beef with the Son-Rise Program”

So here it is, the naked reality of the Son-Rise program. It works fabulously for Ezra, IF you have volunteers. Remember that post about the Best Day Ever?! Sadly that was an isolated occurrence. Since that day most of our volunteers have jumped ship (due to mental-, health-, emotional-, scheduling-, and pregnancy  problems). In fact by summer we’ll have none left. Ezra is hardly in the playroom at all, perhaps 2-5 hours a week. He is totally overloaded with the presence of his brother Micah, who just loves him and wants to play with him. He desperately wants to go to school and play with kids, but so far, it looks like we won’t be able to get him into a school by September, if at all.

When we have Ezra in the playroom all day these are the improvements in his behavior that we see:

  1. He is calm. He doesn’t have any tantrums or melt-downs.
  2. He is more organized in his movements
  3. His attention span increases
  4. He is more flexible
  5. He uses words instead of screaming, crying, and tantrums
  6. He is kind to Micah
  7. He sleeps much better because his brain got such a work out during the day

When Ezra isn’t in the playroom much, these are the behaviors we see all day:

  1. He is anxious and inflexible. Crying, tantrums and melt-downs are frequent, at least 4-8 a day lasting from 2-25 minutes
  2. He is chaotic, unfocused, doesn’t plan actions well
  3. He is so hyper that his attention span is very flighty. He can’t pay attention, doesn’t listen or respond.
  4. He is very inflexible and controlling (for example, if he doesn’t get his way he has a tantrum, won’t try new foods, insists on the activity he wants to do or screams)
  5. Decreased verbal skills, using crying and screaming instead of calmly asking to get his needs met
  6. Hurts, pinches, and hits Micah a lot. Once we put him on time out about 14 times in 2 hours. Of course time out doesn’t work, in the sense of teaching him what not to do, but it does keep him away from Micah for the time span of the time out.
  7. Poor sleep, and crazy appetite. He is actually very hungry, and wants to eat constantly, but won’t sit still long enough to get a whole meal down. He is so unorganized that he has a hard time using a fork to eat, and then gets frustrated, gives up, and jumps around. He’s completely obsessed with food, but will only eat high starch foods like chips, potatoes, rice, etc. So he is always hungry, and has violent mood swings.

Things are hard on me as well. The staff at the Autism Treatment Center told us that the most important person in the Son-Rise program is the mom (or the one running the program). I am totally stressed out right now, because I can’t find (or really, retain) volunteers. I am trying to

  • Create advertisement (like news paper articles, flyers, radio shows, etc.)
  • Find and interview volunteers
  • Train them (takes at least 20 hours) and do weekly feedback
  • Research treatments for autism, read literature published etc.
  • Find doctors here in the Netherlands that know about treating autism (haven’t yet), and then read up on what tests are done, so I can tell my GP what to get
  • Work with authorities (fill out forms, go to meetings, make phone calls, meet with psychologists, etc.) to get Ezra a school
  • Home school Ezra
  • Do all of the Son-Rise playroom time with Ezra myself
  • Administer sensory integration therapy, and speech therapy myself, since we can’t find therapists here.
  • Run a household with grocery shopping, laundry, cleaning, cooking, etc.
  • Plan a new diet that doesn’t include any of the irritants Ezra has, and then spend a lot of time cooking food they won’t eat
  • Take care of my other son Micah
  • Work part time as editorial assistant and voice teacher to make ends meet
  • Find some time to exercise and take time for myself

You can guess how well it’s working to fit all that into a week. It isn’t. Right now I’m trying to figure out which things to cut out, because if I’m stressed, the whole program doesn’t work. But most of these things are worthwhile things to do. Why don’t we move back home, is the question most people ask me here. Yes, why don’t we? Well, first things first. We can’t afford it right now.

OK. I could continue to blog, but I think for once, I won’t and will just try to relax a bit. Wishing you all a beautiful May.

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.

Wrap up from the Intensive

The intensive is now two weeks behind us. With it being Christmas season right now, I have been too busy to work out all the video footage we have. Eventually (sooner hopefully than later), I want to make a little documentary about our time there. How much I wish we were back in that simple apartment free of distractions with an entire staff to support our journey with Ezra. The bottom line is that Ezra was amazing during that time. Having him in the playroom for eight hours a day not only showed us how many challenges he really has, but how much he is capable of, and how valuable the Son-Rise program is in assisting him in his recovery. We learned so much from watching the staff play with him. Coming to the intensive was really necessary for us. Honestly I’m not sure how you can run an effective program without going. They helped us really assess where Ezra is, gave us a clear plan of how to proceed, and what to work on, but most importantly they helped us with our own challenges as a couple, as individuals, and as parents. The option process which is sort of the heart of the Son-Rise program is useful not only for playroom application but for every day life. We really worked through several of our difficulties. Rather than writing all my insights up again, I’ll refer you to my other blog in which I discuss what helped us most. I hope it is helpful to you in some way.

Discussing Divorce
Why we fear divorce
The real problem and the solution
What almost wrecked it for us
How your marriage affects your kids

Third and Fourth Day at the Intensive

I can’t believe we have only one day left. I just want to move here to be in proximity of such great teachers. In the last two days we’ve gotten opportunities to go into the playroom with Ezra and receive feedback on our techniques. I for one feel like I learn best through observing others. During the Start-Up and the New Frontiers we would talk about and watch videos of the techniques applied with children. That was certainly helpful, but even more effective was to see those techniques applied by professional staff with Ezra. Autism is a spectrum and the repetitious exclusive behaviors (referred to as “isms”) manifest in as many different ways in children as do their idiosyncratic facial features. It wasn’t easy to translate the principles of joining to Ezra’s isms as his are actually quite different from most autistic children. One thing that was challenging for us was that he is so flighty with an attention span of 2 seconds. He will go from one activity to another within seconds. For example he’ll be reading a book, then get up and pull down a bear from the shelf, walk over to the toy school bus, drop the bear, push the bus back and forth, and then move on to climb on the little play structure. And all of this in 30 seconds all the while narrating the mental image reel that plays in his head. This can go on all day. When he gives us a green light (an action implying that he’s ready for interaction) then we move in and build on that activity. Through observing the staff we learned a wonderful technique of weaving his interests back into one main theme. For example, if we come in trying to teach him how to play baseball (our props being a bat and a ball) and he would be talking about “naughty uncle scar from Lion King” and he was looking at us directly, we would say something like: yes, uncle scar made some bad choices, but you know what he was really great at? Swinging a baseball bat! And this is how you do it…etc. Here’s an example of a format of working with Ezra:

  1. Enter room with prepared theme
  2. Explain the theme
  3. If he is isming join, if he is into it: go for it
  4. Wait for green light (longer looks, verbal or physical cues)
  5. Celebrate the green light
  6. Assign him a role with a physical action to help him participate in your game
  7. Become the show, celebrate every action
  8. He wonders off goes to isming after maybe 3 seconds. Starts talking about mommy and daddy, or uncle Dave
  9. Wait for green light
  10. celebrate the green light when you get it
  11. Build using his last motivation i.e. mommy and daddy and weave the theme back into it: you know mommy and daddy can hit a ball  blind folded

We have found that to be tremendously helpful with Ezra, as it is simply impossible to get a good build when you have no direction and purpose. We learned how to do feedback properly, got verbal and video feedback on our sessions with Ezra, learned how to fill out the forms, and had a practical Q&A about our situation in the Netherlands and the volunteers.

I have to admit I had some reservations about the Son-Rise program. I thought that the whole joining thing made sense, but I didn’t truly understand it’s purpose. Part of me was also thinking: isn’t there a faster more effective way, and I know I can get to interact with me, why should I wait until he chooses to? This week I understood that what Ezra and autistic children have the most challenge with is wanting to connect with others. Through joining him with love, and enthusiasm in his world in whatever his chosen activity is, for however long he decides to do it, and refraining from trying to get him to interact, we allow him to exercise what he has the most challenge with, which is to decide for himself to want to interact. If we don’t truly join, and keep on going after the interaction, or prompting him, then we are not giving him the opportunity to chose. By refraining from prompting through questions we know he can answer, or constantly interrupting him in his activity we help him commit to really want to play with us, or not, and all the while learning that if he wants to play he needs to do to be clear. When wanting to interact with a peer, he usually walks up to them and either stands too close or too far away and shyly mumbles “want play” while his whole body and face are turned away from the peer, with only his butt pointing towards the peer. And almost every time I had to step in and speak up for him, give clear body language, clear communication. By joining him and waiting for strong green lights we help him understand what is necessary to engage a peer.

We have seen such amazing progress with Ezra during this week. It really makes a difference to have him in the playroom from 8:45 am to 6 pm. I can easily see how working with motivated people could end in his full recovery. The challenge that we’re facing is of course that we simply don’t have the man power as of yet. We have three fabulous volunteers helping us, but we really need about 6 or 8 for the maximal benefit to Ezra. We agreed in our Q&A that for the moment we really need to prioritize finding volunteers in our agenda.

Soul Searching Second Day

Today we dove right into playing with Ezra. We spent 25 minutes each with him in the playroom and were observed by Becky who then gave us detailed feedback. I always wondered how we were supposed to give 30 minutes feedback on just 15 minutes of watching someone in the playroom. Now I know! I got to really work on my attitude and beliefs that have been limiting me and the program. After feedback we had lunch and then more time in the playroom followed by another 2 hours of feedback, and then watching a session with the amazing Kim while Amanda commentated on her work. Seeing the Son-Rise principles applied so beautifully was inspiring. I realized that many of my doubts that I had about the program were the result of not seeing it done properly, and my fear of wasting my time with this. Essentially I’m very result driven, which kind of kills the effectiveness of the program. It’s not about results, it’s about loving and accepting Ezra and myself and thereby inspiring his growth.

Joining has been an issue for me and the volunteers we have. Most of the time we interrupt Ezra in his isms, try to get interaction out of him, prompt his interaction with questions, cues, etc. Becky explained today that what he has challenges with is deciding to want to interact. By truly joining him, we strengthen his “decision muscle”. Yes, he will give us little green lights, little cues that he’s ready, but they are not clear, they’re not committed. Becky pointed out that with such unclear signals to peers he would have a hard time engaging him. I have definitely seen that in application where he would go up to a peer and sort of mumble his desire to play, usually with no eye contact, and the body turned fully away from the person. So by joining him and really only engaging with him when he gives us clear signals we help him with his biggest challenge: the desire to want to interact with others, and the way to communicate it. When he does show us that he wants to interact or glances the way we help him gain confidence is by acknowledging and celebrating his efforts in looking at us.

Another technique that we learned today is how to use a theme, and keep on tying his motivations back into the game we are trying to play. We haven’t heard about that before, but it was really inspiring to watch Kim prepare a game, and keep his interaction going.

I’m excited for tomorrow.

First day at the Intensive

We are staying in a special unit here at the Autism Treatment Center. There is a large bedroom with two beds for Aaron and I, a fully functional kitchen with a stocked fridge, a living room with couches from 1980, a bedroom for Ezra with two beds, a bathroom, and best of all a special playroom for Ezra complete with toys, and observation room. There are no visual distractions anywhere, no generic hotel paintings, or decorative pillows. There are childproof locks on all the doors. This is the way to vacation with an autistic child. Except that we are of course not really on vacation. We are here to work, to be taught, to grow, and to learn how to run an effective Son-Rise program.

Our day started with an orientation meeting. Ezra got to go into the playroom immediately with the trained staff while we gave them a history of Ezra up until today. We talked about challenges we have in the program, and what we want to accomplish this week. We did a bit of option process dialogging, which is a special way of talking about things to determine the beliefs that hold us back in the program, and frankly in our lives. The most important thing about a successful son-rise program is the program administrator, so ME. If I have reservations than the program doesn’t really work. Son-Rise is not just a way to teach your child how to want to interact with others, it is a way of life, a commitment to refrain from judging others, and most importantly from judging yourself. It’s not about choosing to be happy all the time, although with an awareness of your beliefs you’re more likely to feel happiness, it’s about owning what you feel, and not judging yourself for it. So while the staff is going to be working with Ezra our main work will be to unearth our beliefs, work on ourselves, and do an in depth exploration of who we are, what we want and what is holding us back.

In the afternoon we got to go into the playroom with Ezra, while being observed by Susan. She the gave us feedback on our techniques, and then we got to watch 2 hours of Ezra in the playroom with Amanda, while Brandi commentated for us. After that another hour with Ezra in the playroom and we were all done by 6 pm, exhausted, and ready for bed.

I learned today how many more techniques there are to get him to look at us. I’m excited to share that with our volunteers when I get home.

Trip to US and the first day at the Son-Rise Intensive

What a full day we’ve had! Daddy and Ezra are taking a walk in the crisp night air, while I’m at the laptop, using the last bit of energy I can muster to write this post. Ezra was like a little traveling superstar yesterday. We left our home in the Netherlands at 6:30 am. Ezra had been up since 4:30. We arrived in Brussels two hours before our flight, and just barely made it on to the plane because of the long check in lines, passport control and then security control. By the time we were in the passport line we finally got smart and stood in the handicapped line, which moved us through much quicker. I was amused to see some people with guilty looks and smirks on their faces move through the handicapped lane. I did however get the new and enhanced “full pat down”. It wasn’t nearly as invasive as I’ve heard some people say, but perhaps that is because with an autistic child and a performing business background I have a much higher tolerance for invaded personal space. Once again, I really doubt that this enhanced pat down would reveal much more than a trained K9 could sniff out. Put the money into the dogs please, crazy American government! They’re more effective in detecting explosives, and much faster and fiercer in chasing down suspects trying to escape. And we could be helping so many animals in the shelters! Anyway, best not open that can of worms.

The plane ride was relatively smooth. Ezra got restless, but aside a couple of screams, false calls to the flight attendant, playing with the toilet doors, and us having to remind him every 2 minutes to keep his seat belt on, the plane ride was very smooth. We landed in Newark around midday and were greeted by the most amazing blue sky. I can’t even begin to tell you how amazing blue skies are after the Netherlands. We ran into a little bit of trouble with immigration because Ezra’s American passport had expired a month ago. I had taken along his Swiss passport because that one was still valid, however unbeknownst to be it lacked the chip that US immigration requires. They escorted us down to an additional screening area where we were essentially given a warning like: well that was naughty of you not to renew the passport. Pay better attention next time, but you’re good to go. I was most amused by the sign on the desks that read “soft, second screening”. I wish I could have taken a picture of it. I don’t want to know what the next sign would read: “third trial through terror” closely followed by “fourth, final, and fatal if failed screening”.

We picked up our rental car and had a great time driving up to White Plains, because it was such nice weather, and there is so much air traffic between New York and Newark. Ezra stayed alert and excited at seeing so many airplanes and helicopters. We stopped at a mall and took advantage of some of the great salesn right after Thanksgiving weekend, had lunch at Applebees, and just LOVED, LOVED, LOVED getting free refills on drinks, and friendly customer service. It’s the little things really!

I was certain that Ezra would fall asleep in the car, but he kept himself alert and awake the entire trip. We arrived at the Autism Treatment Center at 7 pm. Ezra had fallen asleep only 15 minutes earlier. We acquainted him with our apartment for the week and went to bed at around 7:30pm. At this point Ezra had been up for almost 20 hours, with no real problems. Such a trooper. Unfortunately he woke up at 2 am, and didn’t go back to sleep, so that is why I’m so tired right now, because I was up with him.