What’s next?

What to do, when what you want to do is not possible? And is it really not possible? This blog post has no answers. If you have suggestions, by all means, as long as they are respectful and you have even had experience with them, I’m all ears. This is more a bit of an insight into the ongoing challenge it presents when you have a child with autism, and trying to figure out what to do next.

We have seen amazing outcomes in running a son-rise program, and I’m confident that had we been able to run it right when we got here, with the financial help we get now, it would have led to total recovery. As it was, we had to modify it and run it on a very limited basis. One of the major challenges is that the Dutch are a very hard-working and honest people, but volunteering is also paid (?!). So when you hire the people who really want to work with autistic children here through what is called the PGB fund, they a) think they are the experts and know everything and b) they work hard for their money and try to “make results happen” instead of joining, so obviously that is exactly the opposite of the Son-Rise philosophy. Even the Autism Treatment Center says that it works best when run full time (so on a 40-70 hours a week basis), but of course a little is still better than nothing.

Now we are  wondering how to continue. We are legally required to send him to school, and when he comes home he is totally exhausted. I know the person responsible in our community for placing children in school will not allow for him to be taken out. At the same, time being in a highly overstimulating environment with noisy kids who have their own behavioral challenges, having to take the Taxi to school for at least 1.5 hours each day and being forced to cede control to an imposed schedule are certainly the cause for a lot of behavior we have been seeing, such as aggression, inflexibility, rigidity and repetitious behavior which currently is verbal obsession about numbers and especially the schedule/time. He is also still not sleeping well and waking up early and during the night.

His psychologist suggested the use of a certain medication which is an atypical anti-psychotic called Risperdal which helps with just the above symptoms. She is not the first to suggest it, so have his pediatrician and his psychiatrist. How far do we trust our medically trained people is often the question. They all pointed out that generally they see very good results in the majority of children. However just  about every medication when researched online you find all the bad things that can happen. So here is the scary list of potential side effects.

The severity of adverse effects often depends on the dosage. Risperidone has been associated with weight gain.[10] Other common side effects include akathisiasedationdysphoriainsomniaelevated prolactin level, low blood pressure, high blood pressure,muscle stiffness, muscle pain, tremorshypersalivationconstipation, and stuffy nose. In addition, risperidone treatment causesphotosensitivity, and patients should be warned to avoid prolonged exposure to the sun or to use effective sunscreen (SPF 15+). Other skin conditions have also been reported, including rash, xerosis (dry skin), acne vulgarisalopecia (hair loss), and seborrhea. At high doses, skin hyperpigmentation may also occur.[11] Irritabilityaggressionsleep disorders and eating disorders are also common due to the blocking action of serotonin and dopamine that risperidone produces. Also heart arrythmia, bradycardia and heart palpitations often occur.

Many antipsychotics are known to cause hyperprolactinemia, which may lead to hypogonadism-induced osteoporosisgalactorrhoea(unexpected female breast-milk production), gynaecomastia (male breast development), irregular menstruation and sexual dysfunction.

Neuroleptic malignant syndrome has been reported with risperidone, with at least two fatal cases reported. Tardive dyskinesia, an irreversible movement disorder, has also been reported with risperidone.[12]

So we can’t really run a full-time son-rise program here in the NL. We can’t really go back to the States because Aaron is finishing his  PHD here for another year. The diet we did with him helped but didn’t cure and now he is even more controlling about food. He eats pretty healthy though and does get a good amount of fruits, beans, veggies and good grains. The Neurofeedback we would like to do with him is hard to do because I still have a hard time figuring out exactly where to put the sensors. The integrated Listening system is a challenge because of his very limited attention span and being totally exhausted at the end of the day. So giving him medication is an option, but then we risk these gruesome side effects. Not giving him medication and we risk him missing several years of school because he can’t pay attention for more than 20 seconds. I still think that his ADHD problems are almost more dominant. And almost all of the medications for ADHD say…well it could either make the very symptoms you’re treating much worse, or it could totally help them go away. 50/50 chance?! And then I have this bone to pick with medications in general in that they treat the symptoms, not the problems. More interesting is WHY is he doing what he is doing, and then can we address that? But research is so very inconclusive on the matter and we are still left with having to help him as best we can from day to day NOW, not in ten-twenty years.

So what to do from here on out. If any of you have tried Risperdal successfully I’d love to hear from you, and likewise those who have had negative experiences, please tell me. What other option am  I missing here?

 

 

A Miracle in Progress

This is an inside view of our most long-time and faithful Son-Rise worker. 

Working with Ezra was definitely a challenge for me. I started out two years ago after reading an invitation to play. I wanted to just take a look and then make up my mind about working with Ezra or not. I had never met an autistic person. I had no experience, no credentials. I just simply enjoy being with kids and was trying to give something to someone who does not walk through life as easily as I do. Vanessa told me to just try it out and she would provide me with some basic training and answer all my questions.

Ezra was not quite like I expected him to be. He did not sit in a corner, rocking back and forth, that’s pretty much the image I had in mind of an autistic person. He did, however, flip pages of books or spin the wheels of cars for hours. One of my first questions was: What do I do when being in the same room? The answer was simple: Just copy what he does and try to find out why he loves it so much. And I have realized in the last two years, spinning the wheels of cars can be interesting. Why do they not all spin for the same length of time, how do they catch the light while spinning?

Playing with Ezra was in some ways easier than I thought and harder than I thought. The idea was to use the three E’s in his playroom: excitement, enthusiasm, energy. Sounds easy but can be challenging if you are tired or having a bad day yourself. Some days were great, we had loads of fun with a game that I had thought of or we made up together and the next day would be frustrating for me because Ezra would just want to play the exact same game again, creating a seemingly boring ism out of an interaction. One of the greatest challenges during the past two years manifests itself in exactly this situation: MY attitude. If I went into the playroom confident that we would have a great time, that I would just be fun, loving and accepting no matter what Ezra wanted to do, we always had a great time together. I could join him in his isms for hours and still felt like we had achieved something and in the end I was usually rewarded with a look, a touch or a smile. If I, instead, had very clear expectations of how Ezra should behave (because of a previous interactive session or a specific goal that I felt I needed to reach), then Ezra would react by being very exclusive. He would not look, speak or invite me to play in any way; he would definitely not do what I wanted him to. Those were long hours and I felt frustrated in the end.

I have seen Ezra progress a lot during the last years. In the beginning he barely talked, sometimes he answered questions with just one word if at all. He would scream a lot, he would not look at me and he did not like to be touched by me. By now, I know he has beautiful brown eyes. He loves looking at me when I do something funny, he loves it when he can scare me and I always pretend I did not know he was sneaking up on me, he loves numbers, he likes to draw and tell stories. He loves talking about elevators, airplanes, family and friends. He knows the birthdays of everyone in my family. I always have to be careful when making up stories; he remembers them better than I do. He still screams and throws tantrums but if I stay calm, he calms down quickly. And I have to say, I totally love it when he comes up to me and snuggles with me when reading a book together.

Looking back I can say it was a wonderful experience watching Ezra develop and knowing, I am part of the world that Ezra has decided to join. I have learned a lot as well. I now know I can be fun, enthusiastic, creative (create games for every motivation), patient (pressing the imaginary elevator button for the 60th time), excited about small and seemingly boring things (house numbers, for example) and I can celebrate like hell if I know it will light up Ezra’s face. Appreciation for the small things in life Ezra has taught me: gestures, looks, sentences like “will you come to the playroom with me, Leonie?” make my day. I have learned how hard it is to truly accept someone for who they are without trying to change them but how important this unconditional love is to the other person.

With Ezra, I know that I left a mark in his life. And I know that he will always remember me.

After these two years, there is only one thing left to say: Ezra, I love you. See you in April! And to everybody else: Do not be shy, try it yourself. It is time spent wisely!

Leonie joined our team in the early stages of our Son-Rise program and was with us for two years. She is now moving on to her internships. We are sad to see her go, but grateful that she was such a big and precious part of all of our lives, especially Ezra’s. We love you, Leonie. 

Being attached to the outcome is bad for relationships!

This started out as a Facebook post, but I thought it worthwhile to share here. This is an example of using son-rise principles. The principle I’m trying to teach is this:

You can be happy, even when you don’t get what you want.

January 4th, 2012
Lunch Time
 

I’m in the process of teaching my kids how to eat food they don’t like without complaining. Today Granny made pea soup with potatoes. NOT my favorite. So I made a big deal out of the fact that I don’t care for the texture, the look, and the taste, but that I would choose to be grateful anyway because she made. (By the way I used lots of exaggerated facial expressions, and a bit of slapstick, because my kids are motivated by that. They think it’s funny). I I taught them the shoulder shrug and how to say “Meh, it’s not my favorite thing, but it’s OK.” Then I tasted it and said, “It’s not that bad. Not my favorite, but not that bad.” It worked! I mean, IT WORKED!!!! They both ate it, no complaints. However, I did have one food in there that they both really liked which was potatoes. I just put them in the soup and they realized that the soup tasted OK. Not great, but OK.

Dinner Time
Just to follow up with the same procedure at dinner. They were in full complaining mode about the salad. I explained to them that they could choose to complain all they wanted, but it wouldn’t get them what they want, and it wouldn’t have any effect on my happiness. I repeated the shoulder shrug lesson. It worked AGAIN! Yay! They ate the salad and then got to eat their preferred foods.

January 5th
Today was another story, and illustrates well what the key factor is to success of above model. Tonight’s dinner: Quinoa with coconut curry pork chops. HIGHLY delicious. However, there were two downsides. There was no food that Ezra really liked. Ezra started his usual routine of yelling at the food, throwing himself on the floor and saying he wouldn’t eat it, and then going to punch Micah. I figured this is just his usual “warm up” and after it’s over he sits down and eats. This time however, I was attached to the outcome. I wanted him to eat (which he never did by the way). He ended up not eating and having a 40 minutes screaming, sobbing, and banging doors melt down in his room (where we sent him to, because he wanted to physically take out his anger on Micah.) I went with him to help him calm down, but when that didn’t work and after discussing it with Aaron we decided that Micah was the one who tried and ate his food, and he was downstairs getting no attention, while Ezra was getting all the attention. So I went to Ezra told him that I loved him, and knew he would figure it out by himself, and that I was going downstairs with daddy to play with Micah, and he was welcome to join us as soon as he felt ready to. It took him 4 minutes before he showed up completely calm and ready to play with us. I remembered several lessons I thought I had already learned.

  1. If I am attached to the outcome, I’m empowering my kids to act out and my relationship with them is no longer important. Getting “the outcome” becomes the most important thing.
  2. Give attention to the behavior you want your children to have. So we went to play with Micah, instead of “helping” Ezra through his tantrum. Really why were we trying to help him anyway? So that we could feel better?
  3. Trust my child to figure it out for himself, and make his own choices. If he would rather be hungry than try the new food…OK. I didn’t want him to be hungry because it means he gets cranky, wakes me up early, and whines a whole lot more for food.
Alright. Carry on everyone. Thanks for letting me share.

 

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.

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.

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.