July 15, 2011. I got an email from a good friend working at the Autism Treatment Center saying that my blog was one of the top blogs that popped up when googling the Son-Rise program. He also informed me that a person quoted my headline from a previous post “My beef with the Son-Rise program” dated May 1, 2011 as reason for not attending. I wish I could get that person on the phone and tell her to actually read my blog post and look at our website not just draw conclusions based on the headline. In response to this email I would like to set the record straight. Here is an email to this person and to all you who will read my blog post about our challenges, which after much deliberation I’ve decided to let stand.
there are a lot of ways you can educate and help your autistic child, and not every approach works for every child. So many different therapies you can do, and in the end all will help in some way. The only wrong thing to do is nothing. Any interaction will help your child’s brain grow. However, I found the Son-Rise program is the only program that was really created for the parent. It is the only program that will give you hope, that will teach you how to love, understand, and believe in your child, even if he never changes. Spending a week at the Autism Treatment Center is like getting an oil change for your car. It borders on essential to make that 5000 mile journey ahead of you without your engine breaking down. As you see in below post, I let my engine break down (my beliefs not serving me), and guess what? My personal family counselor at the Autism Treatment Center found my blog post, saw we needed help and called us. That’s how awesome they are. I wish I could spend a week with them every 3 months just to recharge. The Son-Rise program is the BEST thing that ever happened to our family, as a married couple and especially to Ezra. The staff at the Autism Treatment Center are extremely helpful, loving, enthusiastic, and awesome. Afterwards you feel so refreshed, pumped, and like you could conquer the world.
Yes, it’s hard to run the program when you don’t have volunteers. But how much easier is it to cough up $75,000 for one year tuition at an Autism school? And in my post below you can see just exactly how hard it can be, but please understand that our situation is also very different and unique. We live in the Netherlands. Our family isn’t close, we have like three friends, and are navigating not only through a foreign country and bureaucracy, but especially a culture that couldn’t be more different to America. They don’t believe in customer service, volunteer service, or any service really. NO ONE works for free. The Dutch culture is a very frugal one, they pride themselves of being excellent budget keepers, and bargain hunters. On the other hand, things are also quite expensive here. I find I have to work part time just to make ends meet.
Essentially the people who really want to work with autistic children here have made it a job, and get paid through what is called the PGB (personen gebondene budget) which basically means a personal allowance from the government to pay for the kind of care not covered by school or health insurance. Every single full time Son-Rise family that I’m in touch with in the Netherlands says they get about 45,000 Euros a year for therapy, and they use it to pay people to work with their children. We didn’t get that money, until recently (and then only about a third of what others got). Thus my frustration below. However, if you read this post right, you will see why I’m so desperate to make it work. The Son-Rise program is so awesome for Ezra, I put up with all the bureaucratic crap they threw at me, and fought off authorities in every way, so I can keep a Son-Rise program for Ezra. Yes, it’s that good, and yes it’s worth all the trouble. So go ahead. Read about my challenges, and know that most of the challenges you experience will come from your beliefs, as I recognize mine do as well. But, you know what? It can be a challenge to run any program for autism. At least with the Son-Rise you see results that will matter in a relationship way, and you really grow to love and understand your child. I know a friend of mine who took out a second mortgage on her house to pay for an ABA therapist for her son, and according to her account, they quit, and although he can sort of keep up in school he has no friends. So, after some deliberation I’ve decided to leave the following post up. If you’ve read this letter, it will show you that in the end challenges are just stepping stones. Either way you grow. And to end with a quote from Barry Neil Kaufman himself:
“It’s not the endings that matter but about what each of us is willing to do and actually does. It’s not about perfect outcomes or predictable conclusions. It’s about love. It’s about stepping out. It’s about expressing ourselves, as imperfectly as that might be, because we decide we want to contribute and make a difference.”
I don’t want to be the reason someone decides not to do the Son-Rise program. So go ahead. It will be the best thing you ever do. You won’t ever regret it.
For more reasons why to do the Son-Rise program, read what I wrote on my other two posts on my personal blog:
ORIGINAL POST, “My beef with the Son-Rise Program”
So here it is, the naked reality of the Son-Rise program. It works fabulously for Ezra, IF you have volunteers. Remember that post about the Best Day Ever?! Sadly that was an isolated occurrence. Since that day most of our volunteers have jumped ship (due to mental-, health-, emotional-, scheduling-, and pregnancy problems). In fact by summer we’ll have none left. Ezra is hardly in the playroom at all, perhaps 2-5 hours a week. He is totally overloaded with the presence of his brother Micah, who just loves him and wants to play with him. He desperately wants to go to school and play with kids, but so far, it looks like we won’t be able to get him into a school by September, if at all.
When we have Ezra in the playroom all day these are the improvements in his behavior that we see:
- He is calm. He doesn’t have any tantrums or melt-downs.
- He is more organized in his movements
- His attention span increases
- He is more flexible
- He uses words instead of screaming, crying, and tantrums
- He is kind to Micah
- He sleeps much better because his brain got such a work out during the day
When Ezra isn’t in the playroom much, these are the behaviors we see all day:
- He is anxious and inflexible. Crying, tantrums and melt-downs are frequent, at least 4-8 a day lasting from 2-25 minutes
- He is chaotic, unfocused, doesn’t plan actions well
- He is so hyper that his attention span is very flighty. He can’t pay attention, doesn’t listen or respond.
- He is very inflexible and controlling (for example, if he doesn’t get his way he has a tantrum, won’t try new foods, insists on the activity he wants to do or screams)
- Decreased verbal skills, using crying and screaming instead of calmly asking to get his needs met
- Hurts, pinches, and hits Micah a lot. Once we put him on time out about 14 times in 2 hours. Of course time out doesn’t work, in the sense of teaching him what not to do, but it does keep him away from Micah for the time span of the time out.
- Poor sleep, and crazy appetite. He is actually very hungry, and wants to eat constantly, but won’t sit still long enough to get a whole meal down. He is so unorganized that he has a hard time using a fork to eat, and then gets frustrated, gives up, and jumps around. He’s completely obsessed with food, but will only eat high starch foods like chips, potatoes, rice, etc. So he is always hungry, and has violent mood swings.
Things are hard on me as well. The staff at the Autism Treatment Center told us that the most important person in the Son-Rise program is the mom (or the one running the program). I am totally stressed out right now, because I can’t find (or really, retain) volunteers. I am trying to
- Create advertisement (like news paper articles, flyers, radio shows, etc.)
- Find and interview volunteers
- Train them (takes at least 20 hours) and do weekly feedback
- Research treatments for autism, read literature published etc.
- Find doctors here in the Netherlands that know about treating autism (haven’t yet), and then read up on what tests are done, so I can tell my GP what to get
- Work with authorities (fill out forms, go to meetings, make phone calls, meet with psychologists, etc.) to get Ezra a school
- Home school Ezra
- Do all of the Son-Rise playroom time with Ezra myself
- Administer sensory integration therapy, and speech therapy myself, since we can’t find therapists here.
- Run a household with grocery shopping, laundry, cleaning, cooking, etc.
- Plan a new diet that doesn’t include any of the irritants Ezra has, and then spend a lot of time cooking food they won’t eat
- Take care of my other son Micah
- Work part time as editorial assistant and voice teacher to make ends meet
- Find some time to exercise and take time for myself
You can guess how well it’s working to fit all that into a week. It isn’t. Right now I’m trying to figure out which things to cut out, because if I’m stressed, the whole program doesn’t work. But most of these things are worthwhile things to do. Why don’t we move back home, is the question most people ask me here. Yes, why don’t we? Well, first things first. We can’t afford it right now.
OK. I could continue to blog, but I think for once, I won’t and will just try to relax a bit. Wishing you all a beautiful May.