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.


Brain Scan

I wish I had another $3000 lying around to get one myself. It is very fascinating to see how the brain works. Typically when people go for a treatment they get two scans, one before treatment and then one after implementing some strategies. With Ezra this wasn’t really possible, because he had to be sedated and because he is so very young.

One of the reasons we had to fly to California is because Ezra could never hold still for 2 minutes, let alone 15 minutes of absolute stillness necessary for the scan. The California clinic is one of the few clinics that administers anesthesia. While talking to the doctor she explained that very few people do this kind of anesthesia, because it is very difficult to get them to sleep while still maintaining the brain function necessary to yield results for this specific scan. Thankfully all went well.

Ezra was injected with a radio isotope before the scan which travels through the blood stream into his brain and imprints on the brain showing the areas of activity. It was a bit funny, because they wanted to do a concentration test with him to see how the brain looks like when concentrating. The test consisted of him looking at the computer and hitting the space bar every time he saw a letter, except when the letter X popped up. He was really freaked out by the whole doctor’s office and people trying to put needles into him, so he couldn’t do the test at all. The only way I got him to calm down is by giving him my iPod and letting him listen to Wicked. It was slightly hilarious to me that we couldn’t explain the simple test to him, but that he knew how to scroll through the iPod interface and find the songs he wanted, which has at least five more steps in directions then just hitting the space bar.

Always so precious when asleep. I was very impressed by the clinic itself. This is Ezra in the wake up room. It had a comfortable couch, muted colors, a nice painting, and basically looked like a tidy home office in someone’s home. The staff explained that Dr.Amen wants his patients to be comfortable, and not frightened by a sterile, mechanical environment. The waiting room for kids too had a big bean bag, a TV with videos, games, and toys. I thought they did remarkably well.

The doctor gave us a picture of a typically developing 4-6 year old brain, and then showed us Ezra’s scan to compare. In the scan the brain functions have three colors: blue for medium activity, red for high activity, and white for extremely high activity. A typical brain is mostly blue throughout with a red part in the rear of the brain (cerebellum) that looks sort of like a bat seen from the top. Ezra however had several red centers throughout his brain, and some big white spots for extremely high activity. You might think that extremely high activity means he’s extra smart, or a high activity is good. It isn’t. It means the brain is overworking, which explains for example his repetitious behaviors, compulsions, and accounts for his ADHD. It also explains why he can’t sleep through the night and wakes up every day at 4 am. He can’t figure out how to rest. In the front part of his brain the ACG is lit up like an oval red disk the size of the thumb. If his ACG wasn’t so overactive he would be able to easily switch focus, and wouldn’t fixate on counting numbers and asking the same questions over and over. Another part that was overactive were his temporal lobes, which explains his temper tantrums, and anger outburst. The scan also showed that his cerebellum has problems analyzing sensory data which explains why he makes loud noises, jumps up and down etc. And finally there was some brain trauma evident probably from birth. The strategies he gave us to help all of these areas were:

1. Continue Son-Rise program. He was very impressed with how well Ezra was doing. Just looking at the scan he was surprised to see how functional he really was. He hadn’t expected that.
2. Continue with Gluten Casein Free Diet, find out the other food in-tolerances, and implement a higher protein, high vegetable diet.
3. 30 minutes a day of high aerobic exercise to boost blood flow in the brain
4. Take various supplements to help calm overactive areas
5. Do an interactive metronome therapy to help synchronize the brain halves (we can’t do that here in the Netherlands)
6. Get sensory integration therapy to help his brain learn how to process sensory information

Am I glad we got the scan? Yes, very much. I highly recommend it to anyone considering it. As of now we have not seen huge changes, but that is because its’ rather difficult to get an autistic child to eat what he doesn’t want to eat, and Ezra is a self-declared vegetarian who shuns all form of meat, and insists on potatoes, rice, pasta, and fruit. We also haven’t figured out how to get Ezra exercising aerobically, unless we get a dog, in which case he’s very motivated to run after doggy in the forest, but that means more work for me. We’re working on the sensory integration therapy, but haven’t yet found a therapist in the Netherlands who has time for us. The Son-Rise program is coming along now that we have some volunteers. I wish I could implement everything all at once, but I have to learn patience.