Friday, October 12, 2012

Getting my head out of the sand.

There is too much going on apart from the daily tasks my mind is all over the place and i have no idea where to begin.
There was this facebook group someone pointed out to me when the family had that crasy meltdown over the last failing playschool.
An energetic mother with two kids on the spectrum started this group in order to prepare for a group pushing for changes.
I of course stuck my head in there....lots of wonderful parents with stories of a sucky failing system.
We met...established a grpup party whatever this would should be called.
Since then two press interviews...one with other two parents and our picture on the front...it does not take much to get anxious me going and I admit I hardly slept for a week after that one.
I feel I cannot back down that would be failing what is right. But I am not sure I have the stomach for this...I am so afraid of  say something wrong, not to have all the facts straight and to offend someone. The darling husband encourages me and says I will get used to it. But I am not sure.
I am stuck...
I want to stick my head in the sand but then I would not want too look at myself again....
... so I am stuck.
We will meet again tomorrow and decide the next steps...one will definitely be calling the attention of the media. We have to call for a debate with psychologists teachers special education and all the others.
There is now a policy of full inclusion in the schools. Now many and perhaps most of us long for our child to be fully included and to be able to function in a "normal" school but that can not happen unless the schools accommodate and know how to accommodate. The University that educates our teachers has not one single course on what can go wrong in a childs development...nada about autism adhd and all sorts of other labels and diagnosis.The have no knowledge and nothing has been changed in the education system in order to welcome and accommodate those students that come from special education schools and are now mainstreamed. Unless you have an IQ above 50 you are mainstreamed. Exceptions been made in rare cases.
Mainstreaming is a great thing when it works..and oh boy how I want this winter to work out for my little one.
But it has to be done well. People have to know what they are doing. I know there is a lot of knowledge out there about how to make mainstreaming work. The thing is without the right resources nothing works at all and mainstreaming lots of special need children least of all.
The first step seems to have been closing down special needs schools...not building resources in the main education system. Not educating the education system.
The irony is that a few years ago teachers studied for three years to be able to teach children now it is five years....they refused to add education about special needs.
There are waiting lists everywhere for every step.
Our story is that even though my son had a preliminary diagnosis at two and a half years of age he had official ABA at 3.8 months old.
One and a half years was lost. We started on the beginners level of almost everything with therapists starting on zero ( I call a five days course on ABA zero)
Catching them early is a joke in this system.
There is a weird consensus going on that parents should not be pointed towards scientifically proven methods, but are given a choice.
...a diagnosis and a choice of action...It is a horrible choice.... a scary and unfair choice.
The responsibility of the right choice lies with the parent. Do we all have the means to read science studies to catch upon the best autism treatment while we come to terms with the emotional turmoil of our childrens diagnosis.
It is a sick play.
The participants represent doctors and educators psychologists and special education teachers who all fend their positions knowledge and power and try at the same time not to offend each other because it is nicer as they all have to drink their  coffee in the same cafeteria.
We are a very small community her in Iceland.
And this choice between methods is somewhat real as far as play schools go in theory at least but when you enter elementary school....you just take what you get and if you are lucky you get some nice people to work with your kid....any notions of ABA....better get that out of your head.
...it only leads to trouble.
People post questions like.
Does your kid have an individual education plan?
Do you get to see you kids IEP(equivalent)?
I might be mad enough to get over my stomach...anxiety and longing to keep my head in the sand.
Our story is nothing compared to the ones I see in our group and compared with the horrors parents of older children have gone through.
I write this to clear my thoughts and to see if I am mad enough and I think I am.


6 comments:

  1. That same depressing story of less funds and trying pretend to make a silk purse out of a pig's ear:-(

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  2. yup that is about right...and we all want so badly that silk purse

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  3. Sounds so very stressful and frustrating! Glad your husband is encouraging and motivating with you. I am glad you found a small group of other parents 'in the same boat.' I hope your kiddo has one of those exceptional teachers who try to learn about each student and their uniqueness. The teachers there should have incorporated those special kinds of cases into their ciricullum (there are always more, not fewer cases, and they're not going away....they need to know!)

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    1. ...he is lucky to have asweet teacher.

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  4. I hope you can pour that anger into action - it's very hard, isn't it?

    In the US, it's much the same - but here and there is a state or a district or even a single school doing it well.

    Our town only does it well if you have a lawyer involved. It's so frustrating...

    How is little Sturla doing?

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    1. ...I sincerely hope that this group that has been created will accomplish something.
      Sturla is doing good...this winter is starting out better than anyone could hope for actually :)

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