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.

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.

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.

What autistic children can do that we can’t!

Yesterday we had a group meeting. The Autism Treatment Center teaches us that the group meeting is key to the success of the program. Typically the families who see the most success are those who manage to create a strong spirit of team work amongst their volunteers during those meetings. I’ll skip the details and come to the main point that most volunteers brought up. They have a hard time finding it interesting to do the same thing over and over. This is a true challenge, and the area where autistic children become our teachers. No one knows how to enjoy repetition and make it fun as much as an autistic child. What an amazing ability, to stay so focused, and on task. Yes, we would like to play the piano as amazingly as Menahem Pressler, or surf the waves of Hawaii like Clay Marzo, but could we put in the hours, days, and years like they do, and find joy not only in the skill we acquire, but the process?
They live in the moment. The enjoy the moment and make it count, doing what they want to do to the exclusion of the world around them. Wouldn’t it be amazing if we could learn from them how to live in the moment, and find joy in the process? And then in turn, they could learn from us how to include their world in their joy.
I think the son-rise program can be summed up in this approach, in one sentence: we first learn to understand and enjoy his world, and then we inspire him to learn about ours. The process can be very fun and liberating, as long as we enjoy the moment.

PS: and just to add this thought, I think that approach to first learn to understand and enjoy someone else works with all your children, friends, family and coworkers.

Clearer speech

There are so many theories out there on what causes autism. Wouldn’t it be nice to know the answer to that? Then we could just invent a cure. One of the theories out there is that Autism is really the result of a low-grade infection (as well as low-grade inflammation)  that causes an auto-immune response in certain children with genetic predisposition. (Link to an article) Also I personally believe that there is no one-fits-all cause. I have however suspected that Ezra might have a low-grade inflammation or even an infection. Why? I noticed that whenever we gave him antibiotics, his speech would suddenly become clear, he would look at us, his body would be calmer. Then as soon as the antibiotics were gone, he would revert back to the way he was before. My thoughts were usually that the antibiotics were killing not only the virus they were prescribed for, but also the other infectious material floating around in Ezra’s blood stream. I of course can’t prove that, but it is intriguing.

Ezra has not been feeling well lately. He is really tired. It seems like from one day to another he suddenly started speaking very clearly. His grammar was almost 90% correct, there were even spontaneous utterances. He acted a lot calmer. I wondered if it didn’t also have to do that his immune system is working harder to fight off that bug and in the process of it killing off some of that low grade infection. One morning last week was particularly bizarre. He was so calm, and clear. He looked at us with normal eye contact as if it was the most natural thing in the world. He answered without delay when we asked him questions. Then in the afternoon he informed his volunteer he was tired and wanted to sleep. That never happens. He just doesn’t sleep in the afternoons, yet he slept for 1.5 hours. When he woke up he was back to the autistic boy we know, jumping up and down, running around with no ability to sit still or concentrate, and lost all desire to use communication other than screaming. I think he screamed for about 4 hours that afternoon all the way  up until we put him to bed. His speech has increased a lot lately, and his eye contact, even though the screaming is still every present.

5 Years Old!

He blew out his candles one by one. With the last flame extinguished he looked up into the faces of the people he loves, and smiled. A simple scene, nothing extraordinary, one that is repeated by everyone at least once a year to celebrate the change of the number attached to their name. Except this scene was not normal. It was extraordinary. The smile, the blowing out candles by himself, the month long excitement leading up to this day, the hours spent pretend-playing in the playroom that it was his birthday, the wish-list that got longer and longer every day that he got closer to the event, the longing for cake and impatient fingers being dipped into the icing, the guest-list of friends he would recite over and over to invite to his party, all these “normal” behaviors are extraordinary, because Ezra is not normal. His autism had him so disconnected from the world around him that on his previous birthdays he hardly emerged from his world at all. Presents were just pretty paper to him to put in his mouth. He showed no interest in unwrapping them. If more than three people were in the room for 30 minutes he would get restless and scream. What’s the big deal if he gets birthdays? It means that the people present have loved and accepted him so much that he is willing to enter their world, be a part of it, be celebrated, and loved. It means that he is willing to leave his own little world long enough to enter another world. It means being aware that the world is a good place to be in, that people are kind, that they care, and they show that by making time to be there for him, simply because he desires them to be a part of his birthday and his life, and they bring him thoughtful gifts that he cares about, like airplanes. It means one step towards being a bit like everyone else. Why should Ezra want to be like everyone else? That’s something only Ezra can answer. For those of us who are able to observe and assist Ezra’s journey from “special” to “normal”, might more fully understand all that it takes to “act normal”,and that there is no such thing as “normal. What humans can do without aid, how they can love with no reserve, connect, smile, enjoy, delight, engage, talk, respond, fear, look forward to, remember, is extraordinary. I wish for you all that you can for one day look at all the things you do, that you take for granted, from the simplest shoulder shrug, to the complicated mechanism that allows you to move hundreds of muscles in your body to respond vocally to another human, timing it exactly right, not too soon, or too early, on topic, looking him in the eye without fear, holding entire conversations, and then sit back and marvel at yourself. You are amazing. What you can do is amazing.

Shining Moment!

Daddy’s been gone for 9 days, and things have been hectic to understate it. I got to take the whole day off on Wednesday though, and it probably saved my sanity. I can’t even remember the last time I had the whole day to myself. The freedom was amazing. I look forward to next year’s day off. I drove an hour West to lovely Antwerp which not only has the most diamond dealerships in the world but also sports an excellent shopping district (unlike Eindhoven). I bought myself some earrings (the fake kind, sadly), enjoyed a waffle and a fresh sandwich, and also found some adorable church shirts with vests for the boys. Ezra is very fashion conscious. The earliest time he started checking himself out in the mirror and kissing his image was 6 months old.
The boys did need new Sunday clothes, but I had another motive for buying them a special outfit. Once a year the primary classes in our church present what they have learned during sacrament meeting. Classes go from 4-12 years old. Each class gets up and every child has prepared a little line to say. The older the more elaborate their little talks get, and then all the kids sing the songs together. We’ve attended these programs in the past, and they can be a mixture between amusing and painful. Ambition and misbehavior are equally entertaining. And it only gets painful when the program goes on and on and on. Ezra was so excited about his outfit, and very excited about the primary program. He loves Church, he loves the kids there and his teacher Sister Karen. He asked me every day from Wednesday till Sunday to put on his Sunday clothes. Yesterday, he finally got to wear it and he looked very handsome. How did I not take a picture? Badly done, mother. Anyway, after sacrament was past all the kids went up to the front of the chapel and took their places. Ezra sat down in the front row not at all sure what all this was about. He hadn’t understood that the program was actually going to be during the sacrament meeting. He kept on saying “nursery” to me from the front to remind me that I should leave now and take Micah to nursery. He was so confused why the adults weren’t moving that he didn’t sing the first few songs, just looked out at the crowd with an adorable frown on his face. The familiar melodies managed to catch him up though, and soon he was singing along. When it was his class’ turn to go to the microphone, he waited patiently for his chance to say his line. After the confident little blond girl strutted back to her seat he marched up to the Mic and looked expectantly at sister Karen who had forgotten his part, and had to rush to her seat to get it. He gave her a quizzical look and turned back to the mic, starting his sentence without help in the clearest, loudest voice I’ve ever heard him speak in. He had gotten out two words, when sister Karen rushed back with the rest of the statement which he read out as if he was speaking in General Conference. Enthusiasm and love rang through his voice and radiated from his face as he spoke, and his two grandmothers next to me teared up. When he sat down he had the biggest smile on his face. People came up to me afterward complementing Ezra, saying they liked his little sentence the most out of all the children because they could feel his enthusiasm, and because it was clear that things didn’t come easily to him. I was grateful that they noticed the difference, and wondered if they and you, dear readers, were aware of how much was involved in him being able to do what he did. Just to list the things that six months ago would have been unthinkable: he sat still for an hour; he looked at the crowd instead of hiding; he showed non-verbal expression of feelings (quizzical and expectant); he looked Sister Karen in the eyes; he formed clear speech with his mouth; he read loud but not too high pitched, not too fast, not too slow; he read every word instead of skipping most of them and half pronouncing them; he sat down calmly after he was done; he sang; sang in public; he never yelled, shouted, screamed or ismed in any way during the whole hour. I was so incredibly proud of him. He has come so far in these last six months of Son-Rise program.  And all this change came through just a few hours in the playroom. How much could we accomplish if we had volunteers full time?

On a side note: Turns out also that primary programs aren’t half as bad when you’re kid is participating and you’re not the one who taught the kids the songs and have to conduct.

Flowers please

I had to take Micah to the hospital to get an MRI today. Granny was babysitting Ezra during that time. As she was preparing lunch, she heard him take her cell phone, and pretend to call someone. He said: Pink Flowers please. Yes, the hospital. Micah is sad.

I have no idea how he came up with pink flowers, but it was very exciting to see him show awareness of his brother. Then later today I hurt myself and exclaimed Ouch. He came running in from the other room and said: what happened, mommy? Oh, I kiss it better, and gave me a kiss to where I pointed.

His eye contact was super today too. Very exciting.