Monthly Archives: August 2010

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

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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

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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.

Crash and Burn

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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.