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.

Crash and Burn

11:00 pm I need sleep, badly. I don’t want to write now, but if I don’t I know I won’t get to it until tomorrow night at 7 pm and then I’ll be too tired also.
Things have been rough lately in our Son-Rise program. I could just not talk about it, pretend that this program is the greatest thing ever, and encourage everyone looking for a solution to go do it. Then again, that wouldn’t be honest, or helpful.

Of course the program is a good one, the best, really. The principles and techniques are sound. That doesn’t make it easy though. Here is my list of challenges: 1) finding volunteers, 2) paying for training, 3) figuring out Ezra’s bad behavior, 4) wanting to go in the playroom.

1) My biggest struggle is getting volunteers. How exactly do you get volunteers in a country that doesn’t believe in volunteering, where both parents usually work, because it is so expensive? How do you go about hanging up posters when you have the kids with you all day, and are trying to run a program by yourself? How get volunteers when everyone is on vacation? And then when I do get volunteers, are they energetic, open, creative, and do they do what I ask them to do? Do they show up on time (or at all)? Right now, it’s only Grandpa, Grandma, and I, and soon Aaron will leave for 10-11 days. The other two volunteers are on vacation for three weeks, like all of Holland.

2) Paying for training. The truth of the matter is that we are about 1500 Euros in the hole each month, on a budget that covers only our very basic expenses like housing, utilities, food and health insurance. Aaron just doesn’t get paid enough as a PHD student. I can’t get a full time job (and almost every family here has both parents working), because Ezra is autistic, and besides running a son-rise program there is nowhere for him to go while I work. The government has this thing called PGB that is a personal budget to pay for therapies/treatments that aren’t covered by the state or the health insurance. We got some, but really got screwed over. Dealing with the government here is like everywhere else, except less friendly. In fact, the standard answer I get is: well you shouldn’t have this problem, we can’t help you, try this other person, they can’t help you either. They don’t volunteer any information. If they can’t help me, they don’t tell me, oh this other agency is in charge of that. I really feel like I’m fighting wind-mills. And of course everyone is on vacation, so no one gets back to you over the summer. So we’re left to fund-raise, which is fine, just not that easy to do from a remote location.

3)  Ezra has turned quite violent. He hits, pinches, and pushes Micah at every opportunity. Every time I turn my back he’s hitting Micah (not exaggerating). I’m even worried about taking a shower. If I tell him “no” to something he wants, he just goes to punch Micah. Sometimes he hits him for no reason. He’s made a sport of taking Micah’s toys away from him. Micah gives him a huge reaction (crying, screaming, running) so Ezra’s under-active Prefrontal cortex lights up like a Christmas tree and gives him a lovely dopamine dose (i.e. Ezra is using Micah’s and other people’s reactions like a drug. Now that is also exactly why the Son-Rise program is so brilliant, because essentially we take him into the playroom and give him a huge, exciting, fun, interesting to look at reaction for looking at us, and making any effort at all that is positive. In that way his brain gets trained to get huge dopamine pay offs for communicating and interacting socially. We rewrite his brain, to love looking into people’s eyes, and once he looks he is open to all sorts of learning.) His brain is also specifically conflict seeking (because he gets the “good” feeling from it). In a way, he blocks out the world but cues in just on people’s reaction. He’s a keen observer to anything that irritates me (us), and then he uses that to get those reactions that feel so good to him. So imagine living with a little robot that never gets tired and has a motion sensor on it to follow you around wherever you go doing the things that annoy you the most. Then if you do react, it recharges his batteries, and he’ll do it more often and louder.  So really the cure for his behavior is perfect patience, and to just run the son-rise program with him…which I can’t because I don’t have enough volunteers. Micah of course is all “monkey, see, monkey, do”, so he has taken to hitting me when he doesn’t like what I tell him, or hitting Ezra, just so he also gets to go in time out. I need to write a separate blog post about time out. It just doesn’t work. I’m sorry, all you people with your well meaning parenting books. I’ve read them. Time out doesn’t work with an autistic child. And then how do you discipline your normal 3 year old, when your autistic child doesn’t get disciplined with time out? Spanking? No good, sorry. I can’t teach the kids that hitting is wrong by hitting them. Plus fear, and intimidation might work for a little while, but it doesn’t build a good relationship and the point will come where they’re too big/strong to be intimidated by fear and hurt, and when the bond isn’t there because I spanked “my lessons” into them, they won’t care what I have to say.

4) And finally the real problem. I don’t want to go in the playroom with Ezra right now, because I bring all the baggage with me (points 1-3), all my problems, concerns, and judgments. You can’t do son-rise unless you love and accept your autistic child the way he is. In fact, acceptance and love are the keys. Love the fact that he wakes me up at 6 am and screams bah for an entire hour, love the screeching noises he makes during the day, and love everything about his violent behavior. Stay calm, ignore bad behavior, because responding makes it go up. Funny thing is, Ezra doesn’t act that way around others as much, because others aren’t as bothered by noise as I am.

OK. So that’s why I feel like I’ve crashed and burned with this program. I know I’m just stressing out because we’re low-staffed right now. In all actuality Ezra has made such amazing progress that I could just be thankful (if I managed not to be so stressed out). He is speaking much more clearly and is answering questions more consistently. He’s even started to answer “why” questions, and he is now starting to tell us about past events. That is of course totally new and really exciting.

I do have to get some sleep now. I think I’m going to scale back the son-rise time and just focus on getting volunteers, and readjusting my attitude. In the end nothing is good or bad. We decide how we want to look at things.

One month into the program

I don’t get to update as often as I would like. Every two weeks we are supposed to assess where Ezra is, and then write goals to progress towards the end of the program, and full recovery. The problem is that we weren’t really taught exactly how to assess him, and how to write the goals. It isn’t too much of a mystery, but I do feel that the next program, NEW FRONTIERS, will be helpful in teaching us how to do that exactly. Because we haven’t assessed him with all tools, it is a bit difficult to determine the difference a month of home therapy has made. Difficult, but not impossible. Perhaps I should say, general, not specific. These are some of the things he never did before which he does now on and off:

  • answers who, what, where questions about 70% of the time
  • has answered two or three why questions
  • shows empathy (when I hit my foot on the table and said “ow”, he asked: What happened Mommy? When I told him I hurt myself, he came over, gave me a hug and said: “it will be OK, mommy”)
  • asks us questions that are about our feelings:”how was your day?”, “how are you feeling?”

Other than that, his eye contact has improved as well, and he calms down quicker. He has discovered a coping mechanism. When he is angry or frustrated he wants to bite things, which is potentially dangerous to his teeth, and to anything or anyone coming in contact with them. Now when he is frustrated, sad, or angry, we give him a towel to bite. Identifying a coping mechanism is one of the first fundamental mile stones any infant must learn. The ability to self-soothe is what allows us to move past images, sounds, smells we can’t process, that frighten or overwhelm us. The ability to be calm is essential to learning, analyzing, and processing. Anyone who has ever tried to reason with a ranting toddler will know how much easier it is to explain to a calm child why they can’t have something right then.

My personal experience with the program so far is that I go through phases of great motivation as well as frustration. We simply need more volunteers at this point. The children barely let me get away from anything during the day. I clean when they’re in bed, tidy the playroom, and then am supposed to continue to watch webinars, plan playroom activities, coordinate volunteers, schedule, and all of that after 8 pm. I get tired sometimes. I spend all my day with the kids, and autism is all I work with and think of during the day, so in the evening, I don’t feel like learning and reading more about it. I want a break and want to recharge, and yet there isn’t really a time I can prepare the next day activities until the kids are in bed. It’s a dilemma I haven’t solved yet. Nonetheless, I wouldn’t have it any other way. This is still much more productive than me driving him all around to get ineffective therapy. At least we are seeing beautiful results.

Leave me alone, mommy

Bitter sweet. An example of progress, and the question, do you really want to know what they’re thinking?

I was in the playroom with Micah and Ezra and we were taking turns in the swing. We had a great time, until Ezra decided that he didn’t want to give Micah a turn. Micah was already in the swing, Ezra flipped out, started screaming, and started hitting Micah on the head because he was so angry. What to do:

1) calmly and quickly remove Micah from harms way, and tell Ezra that this behavior is not alright, and put him on time out for hitting.

2) calmly and quickly remove Micah from harms way, acknowledge the bad behavior with a sentence like: I can see you’re angry, and then proceed to ignore him, giving the under-active parts of his ADD brain no opportunity to light up with your overblown reaction.

3) give him a furious look, get to his eye level, point your finger at him, so he knows you mean him and hiss: We DON’T HIT!

So in retrospect it is obvious what I should have done. Unfortunately I chose option three, acting on protective instinct rather than calm. Ezra ran crying out of the room. I followed him, trying to calm him down. He gave me a hug, I said I was sorry for hissing, but that hitting was wrong. He said, it’s Ok mommy. So why am I telling you this story, other than to publish my poor parenting moment? First of all, let’s keep it real. After all, I was given an autistic child, because clearly, I was in greater need to learn patience and temper control than apparently all other parents. And second, it led to a remarkable progress. When I sat next to him, he stammered “alone”. “Mommy alone”. After a few tries he managed to say: leave Ezra alone, mommy. He was telling me he wanted some space.Leave me alone mom, is definitely not the message I want to hear, at least not from a four year old. I would expect it from a teenager. It made me sad, but I was also thrilled that he was communicating an emotional need, a state of feeling. He very rarely says anything about how he’s feeling. Once in a while, he’ll say he’s happy, but that is it. Ezra is progressing nicely. I hope I can keep up his pace.

Increased ism-ing

It seems that this last week was a bit of a challenge for me.  I think it has to do with Ezra being very hyperactive. When he’s hyperactive his isms increase, and although it should not cause me any concern, it does still worry me. In general they have gone up dramatically. Two possible reasons come to mind: he cut his finger pretty badly last week and had to wear a pressure band-aid. A kid as sensitive as him could be very distressed by that constant source of pain. When we tried to change his band aid he would cry and scream as if we were pulling his limbs off.  His vocal isms have been very strong, which have made me more distracted, as I am very sensitive to loud noise (really any noise is hard for me to bear). So if I’m not calm he senses it and is more withdrawn. The other reason I suspect is that we pretty much have taken away his TV time completely, except for now and then, when I have to be gone, and granny is with them. They told us at the sunrise program that if we took away the electronic devices we would see the true measure of his autism come out, because he would start ism-ing in other ways. That has held true for sure (although a little, unhelpful, selfish part of me thinks: quiet and happy kid zoning out in front of the TV for half an hour or screaming, screeching and jumping all over the place? Which one would you choose at the end of the day, when you’re tired and worn out?). I spent most of my playroom time with him just ism-ing.

Road Bumps

There were bound to be some days that are more difficult than others. In general there isn’t much that I would change about my decision to have Ezra home. We have a much closer bond already, and I see more talking, and cooperating.

The road bumps I have encountered are these:

  1. This week two of the three volunteers were sick. That creates some problems for me because,  A) Ezra doesn’t want to hang out in the playroom just with me for 7 hours (we both get tired. Imagine cheer leading for 7 hours), B) Micah wants my attention too, and wont tolerate being locked out, C) being in the play room requires preparation, because Ezra is more and more engaged and wants to do activities. Also, Ezra relies on his schedule, and has difficulties accepting change. So if I tell him a volunteer will come, and then doesn’t it’s very difficult, especially when he looks forward to seeing him/her.
  2. Trying to find volunteers in a culture that isn’t service oriented, and finding those willing to speak English, rather than their own language, is a challenge.
  3. Ezra misses friends, peers, just being around them. I wish there were some kids his age here that he could play with, especially boys.
  4. When Micah or I get sick  I can’t do much with Ezra.
  5. I stay home a lot, and start feeling a bit trapped.

What do I mean by trapped? I mean, that there are lots of little errands that pile up because I can’t really just leave Ezra and Micah at home with Granny to go do them, because they would freak out, especially Ezra, because he wants to leave the house. So that sometimes leads to me feeling like I never have enough time to get all the things done that need to be done, and I feel ineffective, and overwhelmed. Driving in the car is an ism for Ezra, as is going to a store, because it is visually stimulating. What happens when I do take him to the store is that we all end up frustrated and angry, because he will run off, won’t wait for me or listen to me. When it’s time to leave the store he’ll throw a tantrum, and Micah will usually follow suit. Then when I come back home he’ll throw a tantrum because he doesn’t want to get out of the car. So for everyone’s sanity it is best to minimize trips to the store with him. The whole reason for keeping the kids in the playroom as the Son-Rise program suggests, is because they can’t cope/behave in the outside world, and in the playroom we can go through these scenarios and give them complete control and teach them how things normally work. That is especially effective for autists who are hypersensitive to noise/smell/sound/images/etc. The playroom is a very distraction free, calm area for them. Ezra is hyposensitive, it seems, and so he craves input, but can’t properly organize it.

Anyway, so I feel a bit trapped sometimes, not necessarily because I’m home with my kids, but because I feel I can’t take them anywhere. It’s certainly an emotional/attitudinal problem that I need to sort out. I need to either be OK with them screaming and crying when I leave, or them screaming when I take them to the store. I’ve also noticed that it doesn’t really matter how much time I spend with the kids individually and together, they just want me around all the time.

Alright. I need to finish up this post. Ezra is crying upstairs again. He had a really bad night last night, and this one promises a repeat.

The first Day of Ezra home full time totally rocked

This day was absolutely AWESOME. I can’t believe how great and fun life can be. I think the fact that the sun was shining definitely added to my mood too. I’m so thrilled with how well this day went. I think it was successful because I had planned the schedule out and written it down for Ezra, and I took care of myself first, and so had enough energy. I have to admit I was a bit worried about having Ezra home full time, and was certainly anxious about today. I’ve had Ezra at home before and typically it was horribly stressful, and not fun at all, because he was all over the place, and I was constantly trying to modify and/or control his erratic, loud, and compulsive behavior, which if any of you have tried with your autistic children is a battle lost before it began. I got up extra early so I could do some meditative reading in the scriptures, and get ready before the kids were up. The morning started out so relaxed, because I didn’t have to get Ezra ready for school. Typically he has to be out the door by 8 am. At 8:30 am I said goodbye to him and left him to play with Granny while I took Micah to his little playgroup. After picking up a few groceries I headed over to the music school to practice. It is amazing how happy I am when I get to sing. The autism treatment center really stressed that the most important person in the Son-Rise-Program is me. If the administrator isn’t happy and at ease the whole program doesn’t work. Their view is also that our children are our teachers, and not the other way around, and that we can learn from them. This is why if you will be following this blog you’ll read a fair amount about my development too. So in order to have the strength and energy to work with Ezra, I first went to fill my well, by doing what makes me happy, which is sing.

At 9:30 am I came back home and played with Ezra for an hour and a half until it was time to go get Micah. It is such a revelation to just join your child in whatever he does, without trying to modify and control everything. Control is a real fun-killer. We had such a great time together, with lots of eye contact.I won’t give you an entire play by play, but here are some of the highlights of today, things he has never done to such an extent.

He gave his volunteer Daniel a hug and a kiss. When he was playing with Daniel we saw the longest pretend play sequence we have ever seen from him. He had daddy and mommy go to the bathroom, wash hands and then go to work and back again. Then mommy and daddy both cooked dinner in the microwave. During this play he answered a what, and a where question without any delay. Typically he doesn’t answer, or I have to ask 40-50 times. It was very exciting.

And earlier in the day he had his first coherent conversation on the phone with my brother. He just adores his uncle Dave and wanted to call him on the phone. With some prompting he waited for the signal and for Dave to say hi, and then said hi back, and asked him if he was working. When Dave said yes, Ezra said: when uncle Dave come home (our house). Dave explained he had to work still, and Ezra said, uncle Dave come soon, and then ended with his typical high pitched, loud, BYE and the hand wave to the phone.

I had never thought life could be this fun. Sure it required a lot of energy on my part, but I’ve learned through this program that energy isn’t something you have. It is something that comes when you act energetic.

First Son-Rise day

Today Ezra stayed home from school, so one of the social workers could come and film him and me working. Micah was in playgroup, and we had an hour and a half to ourselves in the playroom. I found it was much easier to be in the moment and play with Ezra when I wasn’t worrying about Micah. The play session went great. Ezra’s eye contact was amazing and he really communicated what he wanted at least 30 % of the time. He loved the hammock that we use as a swing and used some imaginative play while in it, pretending to be on an airplane or in a restaurant. Trea also gave it a shot after filming and did really well. Ezra gave her several glances. After our session we watched the video on TV for review together with Ezra. I noted how much he enjoyed seeing me on TV. We’re supposed to get rid of all electronic devices as that is his -ism…his way of of turning off half his brain and staying in another world (and if you’re honest, it does the same to you too, right?). I had the idea though that I could video tape myself looking into the camera and telling stories, so Ezra would love to start looking into my eyes. Later in the day Ezra sought out more interaction with me than usual. Grandma came over and did a session with him. It was the first time that we closed the door of the playroom with me not in it, and predictably he screamed for 6 minutes and banged on the door, but after that it went really, really well. The most remarkable thing is that in the afternoon, his language suddenly increased. He was talking much more, making more eye contact and then he had a whole pretend play episode where he took the baby doll in the stroller to the hospital to see the doctor (me) and after the baby felt better, took her home to put her to bed. He even sang her several songs. It was the longest, most remarkable creative play he has ever done. I’m really excited. Such a huge difference after only 3 hours of son-rise time today. I can’t wait to see what will happen when we get all our volunteers trained and set up. I bet he’ll be in normal school by next year!