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.

Snuggle

Ezra is an affectionate boy, but snuggling usually doesn’t happen with him. He requests it, but then ends up acting like an octopus stranded on a beach. I’m not sure what it is that gives him a hard time lying still, but we usually only get to snuggle with him when he’s really sick. Today was a rare and delicious exception (although he did feel just slightly feverish). I was resting on the couch and he came up to me to snuggle, brought his blanky with him and actually stayed cuddled up to my side for 15 minutes.

Read First Book

Ezra has been able to read since he was two years old. However, when he speaks, and when he reads, he slurs his words, and when he reads, he usually skips 4-5 words and only half pronounces the words he does sound out. We have been really focusing on clarity of speech in the playroom. One of our volunteers, Marco, did a fantastic job of encouraging him to speak and read slowly, and then celebrated him for speaking clearly. Tonight, we read his current favorite story about a raccoon family that is spying on their human friend. He sounded out each word. I had to prompt him, and encourage him to read slowly, but he did it! I’m so excited!

Because I knew you, I have been changed for good!

The greatest part about doing what I’m doing is what I learn about myself. I get such an amazing opportunity to grow. I’ve noticed that my blog posts tend to highlight the hard parts, and the trials, and then brush over the miracles happening. Bare with me while I do some work on this: why do I highlight the hard parts? Because I feel it important to be truthful and authentic, and unless people know about the bad, how could they appreciate the good? I like to do a lot of research before starting a new program, and I want to be helpful to those in my situation by providing an accurate account, so they are prepared and can know that this is not just some miracle therapy, but that any miracles that happen come as a result of hard work. As I reflect on what has helped me the most, motivated me the most to action after reading blogs, it is not the trials families have faced and recorded  in the chosen therapies, but rather the amazing results. I do appreciate it when I’m having a hard time to read that others have gone through the same challenges, but unless they show how they solved that problem, I find the accounts of trials rather depressing, and not useful at all.

Another side effect of my blog posts has been that the two volunteers who showed up so far to check out the program were moved out of pity for my situation. Every time pity only got them through our front door, and in face of actual commitment and stepping out of their comfort zone they were right back out the same door. Pity is not the proper Son-Rise room motivator. Honestly, who likes it when people feel sorry for you? And what good does it do, when people say “I feel really sorry for you”? Um, thank you, I’ll just write that word on a piece of paper and throw it on the fire. Maybe then at least I’ll get a spark of warmth out of an empty word. Feeling sorry for someone is only useful if it moves you to action. But guilt-tripping yourself into the playroom is not what brings about miracles. Change is a result of love and acceptance. Mother Theresa was a great example of love. It wasn’t guilt or pity for the orphanes of Calcutta that got her up every day. It was love, love for them and love for the God who created them.

Here are some of the things she said:

  • Many people mistake our work for our vocation. Our vocation is the love of Jesus.
  • I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.
  • In this life we cannot do great things. We can only do small things with great love.
  • Intense love does not measure, it just gives.
  • It is not the magnitude of our actions but the amount of love that is put into them that matters.

And here are my three personal favorites for our work with Ezra, and what the Son-Rise program really stands for.

  • The miracle is not that we do this work (Son-Rise Program), but that we are happy to do it.
  • The success of love is in the loving – it is not in the result of loving. Of course it is natural in love to want the best for the other person (Ezra), but whether it turns out that way or not does not determine the value of what we have done.
  • If you judge people (Ezra), you have no time to love them (him).

Why am I asking for volunteers? Is it because I’m pitiable and more stressed than the average mom, because I just can’t handle it? NO. I know that Ezra will benefit from being loved by many people. I bring the world into the playroom, so he can emerge from his own world on his terms. Why am I running this program for Ezra? Is it because Ezra has no where else to go in the Netherlands, and because his future is extremely limited without intervention? Yes, and no! I am running this program, because I love Ezra, and because he has a beautiful spirit. He is an amazing gift to me and to those around him. To be loved and known by him is special, it is precious. To go into the room with a child who is anxious, who is trapped in his world and can’t find his way out and then see him emerge because you were there, loving, and accepting him and yourself, that is a feeling you can’t get in any other way. You will know that you’ve given freely without expecting anything in return. It is true service. I believe children with special needs are a gift to humanity. They are like mirrors. When we look into them we will see our human nature reflected if we chose to judge, criticize, correct, ridicule, yell, neglect, ignore, or pass over them. Or we can see our divine nature when we see through their physical and mental prisons into their souls. It is my belief that special needs children have not been given to us for us to improve them, but for them to help us become who we can be by helping them.

One of my favorite songs (and Ezra’s favorite musical) is from Wicked. It’s called For Good. I find the story line (which I won’t go into detail about right now) and especially the lyrics very applicable to our Son-Rise Program.

I’ve heard it said, that people come into our lives for a reason, bringing something we must learn. And we are lead to those who help us most to grow, if we let them, and we help them in return. Well I don’t know if I believe that’s true, but I know I’m who I am today, because I knew you!

Special needs children help us become the best we can be. Through them we can learn patience, acceptance, love, wonder, curiosity, trust. I’m so grateful that God entrusted me with Ezra. He is helping me become the person I want to be. I’ve learned to be more patient, more loving, less judgmental, and more accepting, and self-sacrificing through him. And you know what, it feels good. And if you volunteer maybe Ezra’s words to you one day will be (also from Wicked):

It well may be, that we will never meet again in this lifetime. So let me say before we part, so much of me is made of what I’ve learned from you, you’ll be with me like a hand print on my heart. And now whatever way our stories end, I know you have rewritten mine, by being my friend.


Back on track

Attitude is the key. After writing my last blog post, I decided I needed to just live in the moment when I’m in the playroom with Ezra, and leave my baggage outside. We had a really great session, with great eye contact, good interactive attention span, and shockingly, FUN. Yes, I had fun, and so did he.