18 months of banging my head against walls

Typically I prefer to write about Ezra’s progress and the good things that happen. It’s more uplifting and inspiring to read about how things are working out. It also helps me focus on the positive. You might have noticed that since my second to last post (BEST DAY EVER), I have hardly posted. That is because unfortunately most of our volunteers quit out of personal reasons, ranging from new job to pregnancy. So not only have I been trying to find a school for Ezra here in the Netherlands, I’ve also had to run the program with just 3 volunteers, and do most of the work myself. In the last six weeks we have tried to find Ezra a school here, and we’ve come up blank. The following is an account of what we’ve done since coming to the Netherlands 18 months ago (actually 2 months by now). Remember that as you read, I’m not being negative. I’m just stating things as they are. This post is intended to give you insight into how judging a child by a label (like Autism, ADHD, American, IQ 75) can curtail his future, and leave him to fend for himself. I posted this on my other blog.

Here is an overview of my battle with the Dutch windmills of bureaucracy:

First let me explain that there is something called PGB. It’s a type of assistance the government provides to those with special needs, whose needs aren’t covered by health insurance. Health insurance is supposed to cover speech therapy and physio therapy. It does not however cover occupational therapy more than 10 hours per year. To effectively treat the sensory integration problem that underlies most autism ideally you would get at least one hour a week if not every day, for 2-3 years. So this is something you could use the PGB for, if it is obvious you need it. PGB also covers physical help at home if you’re handicapped, group therapy, parent respite in form of weekend camps for their handicapped children, etc.

Here is a chronology of the help I’ve been trying to get for Ezra:

2009
August
Calling International School, Therapists, etc. No answer until September when school is in.

September
Finally get people on the phone. Make appointments 2 weeks to 3 months from now for initial intake. Then you get an appointment after that 3 weeks later to see if you can get help (therapies etc.)
International school says: “we don’t want a child with problems.”
I get an appointment with Bureau Jeugdzorg (youth office) responsible for giving the diagnosis of help. I explain exactly what I want, and that I need PGB in order to do the Floortime therapy as prescribed by Dr. Greenspan.

October
Ezra starts school at Tomteboe, what I thought was a school for special needs children with Autism.

November
Still haven’t found a speech therapist who can work in English. Start work with an occupational therapist.

December
Ezra leaves home at 8 am and comes home at 4 pm on the taxi every day totally overwhelmed and either cries for hours or obsesses over the DVD player (i.e. pushing DVD’s in and out).
I visit him in school. They aren’t doing anything I asked them to do. Ezra is completely bored and overloaded by the chaos and noise of the classroom (although there are only 10 students). They don’t speak to him in English. I learn that they really aren’t a school, but a medical baby sitting service. Kids get put in there to find out what school they should go to after this. What they call treatment doesn’t look any different from Micah’s typical playgroup, just less kids, and a visual schedule. Still no therapies for Ezra at the school. They said they first have to observe him for 6 months to determine if he needs therapy (despite having a detailed treatment plan from the foremost authorities on childhood developmental delays, and the treatment plans and evaluation of his former speech & occupational therapists).

2010
January
I finally get the translation from the indication from Bureau Jeugdzorg. They say we won’t get PGB, because Tomteboe is all he needs. We arrange for an interview with the school leaders. Together we agree that it isn’t working, and they said: Ezra is too autistic for this place. We can’t help him. I determine to take Ezra out of school by March.
I attend the son-rise Start up in the UK, and learn about the Son-Rise program. First time I see some hope.

February
Ezra is out of school at 1 pm every day. He’s doing better. Final meeting with Tomteboe and B.S. from bureau jeugdzorg. She gives me the absolute smallest amount of PGB, because I don’t want Ezra in that “school”.

The main problem is that Dutch people don’t know how to treat autism according to me, and they certainly don’t believe that you can recover from it. They are so far behind in their research. Everything in this country goes slowly and with a lot of paperwork. They still think that Autism is a psychological disorder, and wait to diagnose it until they’re older. In fact many of these special needs schools for kids with Autism don’t start until the kids are six years old or even older. To me that doesn’t make any sense in light of all the research proving that early intervention is critical.  I’ve even had them tell me that if you wait it out it gets better. Well it doesn’t, and there are loads of accredited studies that prove that. Early intervention is crucial!

March
We start our son-rise program at home. Life seems great. Micah is now going to playgroup every morning.

April-June
Things are looking up. We don’t have a lot of volunteers, and aren’t terribly good at the program, but progress is being made.

July
I finally get the PGB that they promised in February. Six weeks later I get the translation of the paperwork. It states that if I want to complain I have to do it within six weeks. Great. After talking to my friends, I learn that they get thousands of Euros in PGB for their programs, and we got barely enough to cover anything. SCREWED, but, oops too late to complain.

July-September
All volunteers go on vacation, and Micah and Ezra are home together all day. Ezra becomes aggressive and starts to hit/bite/pinch make Micah scream non stop. Micah goes from happy camper to crying, screaming teasing all the time.

October
Things are getting more difficult between Micah and Ezra. It’s constant fighting. I get the local authority to clear Ezra from obligatory school. He’s excited about the Son-Rise program and impressed by what it accomplished. He also says that doing this program saves the government at least 17,000 Euros a year in schooling costs for Ezra.

November-December
Hire a professional to fill out our forms to reapply for PGB, because it’s up January 16, 2011.
AWBZ tells me I need to have an indication from them to get special budget. I fill out a form, and they return it to me saying that Bureau Jeugdzorg needs to give me the indication as Ezra is under aged. I fill it out and Bureau Jeugdzorg says CIZ is responsible. I call CIZ and they say AWBZ is responsible for giving me the indication. WTF? So finally I fill out the form, give it to Bureau Jeugdzorg, and they tell me that because Ezra’s IQ is so low I have to send it to CIZ. Oh good!

2011
January
After numerous calls to CIZ, I finally get a response around the 10th. I get an extremely unfriendly, defensive person on the phone. She denies my case, saying that because I don’t send Ezra to school we have no right to help. I can appeal however within the first six weeks. Hurray! Of course it takes months to process it.
I call International school pleading with them to take Ezra. They again deny him, saying he wouldn’t be able to function in a normal classroom setting (and they’re right). I call the special needs school central to see if the local special needs school could take Ezra half days or at least give me written proof that I tried to put him in school and was denied. They explain that he first has to go to a normal school for six months so they can find out if he qualifies for normal school with assistance. Have I mentioned: he has a speech delay, doesn’t speak a lick of Dutch, and has ADHD and autism? OK, so I’m promised that they will call me back, which in my experience is equal to: “Don’t call me. I’ll call you!” So I call them again. This was our conversation:
M: It will be very difficult to get an indication for Ezra to go to a cluster 4 school

They have normal schools, and then special needs schools: Cluster 1-4. 2 is for communication difficulties, and 4 is for behavior challenges like autism).

M: He wouldn’t be able to function in a classroom there because there are too many students. You should put him in Tomteboe for two days a week.
Me: I asked them to do that, but they said it would be too disruptive to their process.
M: They wouldn’t be able to do son-rise program with him school.
Me: Yes, I realize that, but CIZ needs me to prove that I’ve tried putting him in school. I don’t think it’s the best thing for him, but they’re not interested what’s best for him, only what fits their definitions.
M: Perhaps you could put him in the International school.
Me: I’ve tried twice. They said no. We’re only here for another 18 months, so I really would rather have him speak English, because he doesn’t understand Dutch, and it would delay his speech even further.
M: A.O. from Tomteboe told me he had communication problems. He should try a Cluster 2 school.
Me: You can only get an indication for a cluster 2 school if you have six months reports from a speech therapist which we don’t have, because we couldn’t find a speech therapist in the Netherlands who speaks English.
M: But coming to a Cluster 4 school wouldn’t help his language. They speak Dutch. He wouldn’t be able to integrate there.
Me: I KNOW! That’s why I’m running a son-rise program at home.
M: OK, how much PGB do you get?
Me: None.
M: What do you mean none?
Me: I mean, the Dutch government specifically CIZ isn’t giving me any PGB, because they say I chose to keep him at home.
M: But where can you send him?
Me: Nowhere, that’s the point. The only English speaking school in the Netherlands for autistic children is in The Hague and costs 18,000 Euros a year.
M: Can’t CIZ give you the money for that to cover it?
Me: Nope, I tried.
M: I’ll help you get an indication for a Cluster 4 school.

February

Our Son-Rise program goes from 8 to 3.5 volunteers, and I spend a lot of time filling out forms, calling people, visiting schools, to try and find a school for Ezra. I call all schools. International said no again, Cluster 3 won’t take him because he’s not physically handicapped, Cluster 2 won’t take him because he has no speech therapy reports, Cluster 1 doesn’t apply because he’s not blind. Montessori school said no, and the regular Dutch schools rightfully point out that he wouldn’t be able to function in that classroom.

March

Had another meeting with the person responsible from the community to find a placement for Ezra in a school, and he after 6 weeks work, couldn’t find one either. The special needs school in our community said that Ezra’s IQ was 5 points too low, so they won’t take him.

I’m not sure what to do now. I’ve tried it all.

2 thoughts on “18 months of banging my head against walls

  1. oh Vanessa. I really feel sad for your situation. and I think all you can do is pray. i mean, what else is there?

  2. I am so sorry to hear of all your problems. I can relate in a small way having many friends who are in simalar situtations. Not quite as bad as they are Dutch and able to use the Dutch schools. But I do understand the problems for English speakers living here. I would love to meet you and your family to see if there is any way that I might be able to help.
    Rachel Bird

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