Friday, 14 March 2014

and now we know...

For the last six month we have been in the middle of an inquiry to learn more about my son, and why school is not a natural learning place for him...

Today we met up with the social worker and psychologist to hear their official decision as to his diagnosis... as it became clear fast that there would be one...

My son has been diagnosed with ADHD/autism - this diagnosis now opens up a whole toolbox of help that we can turn to in order to be better parents - and also to equip him with the right tools to get through school. We have the opportunity to turn to both the ADHD Centre and the Autism Centre... we also have the opportunity to apply for financial support if this is necassary to help my son... for example I have just reduced my hours at work to be able to be with him more... full time was adding too much stress, as the long days were exhausting him...

For children like my son... it is not just the learning that can be tiring, but having to work hard to be like the accepted norm... THAT is the most exhausting... the lack of flexibility in school to meet his learning needs and interests... not necessarily the fault of individual schools but a general "the way schools are" problem.

I feel that if my son can get through school he will thrive in real life, because he will find what he enjoys and he will excel at that. I believe in his competency. I have less belief in the competency of the school system to meet the individual needs of the children that HAVE to move through first grade to ninth. Homeschooling is illegal in Sweden... that is not an option.

I believe in his teachers... I see them, I talk with them... I see that they really see my son... and that they like him and care about him... but they also work in a system that doesn't allow them the flexibility to teach and meet the individual needs as they wish...

At the moment I have a strange sort of calmness.
I have known this since he was 2 years old... this EXACT diagnosis. And have been told again and again by preschool teachers and teachers that all is fine, it's just a phase... there is nothing wrong... and yet I received little positive feedback about his days... there was always the moaning about his transitions and his not following instructions and his interactions with other... so as a preschool teacher myself.. I knew what all this meant (I could see him at home too) - and yet when I asked should we take this further, they backed down - no no, its just a phase he is perfectly normal...
(yes he is normal, and there is nothing wrong with him... but it was so obvious he needed more support and more positive feedback than what he was getting).
NOW, after seven years, despite the sadness that life/school is going to be a bit trickier for him, I feel happy that the school system will now have to take me seriously. I had to get these four pages of official writing that sit in front of me right now. Now it is just to see if it will make a difference. I know his teachers will continue to do an amazing job... I just hope that these teachers will get the support they need to meet my son's needs, and those of other children in his class.

But this calmness... it's a bit strange.

But now Michael is asking lots of questions... what is ADHD... what is autism... why me... is there medicine that can take it away and make me better...????????????????

We talk. We watch films. We talk more.
We watched a film during the week on ADHD... where he turned around and told me that I was a good mother, as he could see the frustration on the parents in the film
.....and I was in disbelief how non-pedagogical they were... so it was good for me, too, to watch ... that maybe I am getting things right... with so much opposition/defiance it does make me feel like a bad mother at times (many times) especially with the wonderful parenting advice of Janet Lansbury because my reality is so far from wonderful all the time, its so far from calm all the time, and to be honest at times I wonder how I still have hair!!! But the film made me realise that I am calmer than I thought I was (because I am not calm inside), that I am saying much kinder words and choosing them more carefully (even though it all feels heat of the moment) that I am much more patient than I thought I was (even though it's something I feel I want a shipload more of)...
Of course, having access to centres that can shed more light on his ADHD and autism is going to help... both with how to deal with him and also how to deal with my emotions about my parenting... as well as support for his sisters... after all he is not the only one living with ADHD/autism - we all are... and the films have helped him to understand that... well when he is capable/ in the mood for understanding at least...

He is an amazing soon-to-be-10-year-old with an eye for detail, an amazing imagination and a wonderful intact childishness which I hope he never loses... as it is truly magical. It let's you believe in things that others deem impossible... a valuable asset to have at times!
I remind him every day that I love him, and that even if  I don't always like the things he does, I will always LOVE him, I will always be on his side, even if he does not feel like I am. Because I am fighting for what is best for him and not for what makes him happy now.

OK, I am going to stop... the strange calmness is lifting... the emotions are starting to rush in.....

4 comments:

  1. Wow! How brave you are to tell about your personal journey. I am a long time advocate for children with autism and a huge fan of your Blog and the experiences you so freely share with the world. Michael sounds like he is an amazing boy with an amazing mother. It is also a lesson to all educators to listen to our parents as their instincts usually are correct . It shows how important the home - school connection is in creating positive learning environments for all students. Thank you.

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    1. it IS a scary thing to share these sort of stories... and thank you for acknowledging and understanding this as something brave.
      I have done it because I hope that it can help others... parents who need to feel encouraged to carry on asking questions and making sure their child get's the support they need, whether or not there is a diagnosis... and for teachers to be able to see the WHOLE child... to maybe gain some insight so they can offer a better and more genuine understanding for children that are sometimes seen as "problems" when being a "problem" is the last thing on their mind... they are always trying to please... just stuff gets in the way...

      Thank you
      and thank you for being a long time advocate for children with autism.

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  2. I am really touched by this story. I am a teacher of kindergarten children. I see kids who are a bit quirky, a bit more active, a bit less focused, and I know that we will not apply any labels of a diagnosis for at least a year or two. I have always driven myself to refocus these kids and provide accommodations or modifications that will help them be more successful in a rigorous curriculum. And now, with just a few years til my retirement, I have had an epiphany of sorts. I now view the kids as being more "okay" and in fact - dare I say gifted! I cannot "fix" them so they are learning while following the narrow confines of school plan. By viewing them through this lens, I have found more patience and understanding with an eye toward building on their special skills.
    In a few months, they will move on to grade 1 and even though I will explain what I see to the new teacher, they will need to come to their own epiphany of sorts if they want to better serve all of the children.
    Thanks for sharing your reflection. I too need to learn more about all of the kids.

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  3. Thank you for posting. I know it will help others, so they will not feel alone. As an early Childhood teacher, I know I must be understanding of each child as an individual. I pray you have supportive, loving teachers through out your son's life.

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