Inclusion within inclusion

I'm thinking about my eldest daughter.  It is fascinating talking to her now (16) about what she remembers form when she was younger and at Primary School.  At Primary School she became extremely anxious and didn't want to stay at school without me.  Back in 2004 no one had heard of Autism in Nelson - at least not in the mainstream schools.

I was so happy to met another parent whose children came to the school whose mother was a world renowned Autism expert in England.  This mum knew her stuff about Autism. The principal hired her to help me and my daughter.   From my perspective she was like an Angel, what a gift, I finally felt validated and had some ideas on what to do!

So she told me of the 'best practice' stuff to help with anxiety.   We went about setting up all the 'obvious' changes to my daughters classroom.    We did out the storeroom and made a lovely quiet place with her own box of goodies.  We moved her desk to a 'quiet' place in the classroom.  We made a journal up with pics in it so her teacher could use pictures with her to communicate and she could use pictures to ask for help from her teacher.  We asked for some technology to help with her writing, as handwriting was difficult.  And a couple of other things as well.   

Of course, you know what happened don't you...   My daughter rejected all of it.  She wouldn't have a bar of it at all!

Now at 16 she tells me off.  Mum, I hated all that stuff you did to me in Primary school.  I hated being different.  I hated you making me leave the classroom and go and talk to all those people.  

UDL allows in the most powerful way, for difference to be accepted by everyone.  What would have made my daughter less anxious and more included?  Probably if everyone was able to access the quiet space and the fun box.  If everyone had access to pics to express their desires.  The teacher was very rigid and very black and white.  UDL allows colour into the classroom while keeping everyones dignity to be included alive.

Sometimes I just want to shake the world.

Why do you have to be so black and white?

Why do you wear blinkers?

What happened to your patience and understanding?

What happened to you being able to help?

Where is all the grey and colour gone?

Why do you put everything in boxes?

Is it because a square is safe?

What is wrong with a circle or triangle?

Can you delight in difference or

Could you weather challenge to

your traditions and your blinkered normality?

World, why so right and wrong?

If I could close my eyes and imagine a world,

It would be colorfully filled with unimagined shapes

Joining together to communicate,

Acknowledge,

Help.

To be,

Different and

To love it all with abandon.

By Tara

Written 20 August 2014 

A teachers gentle communication of a problem

When my daughter started school she wasn't diagnosed.  I told the Principal she was outside of the box (meaning she was different) and he was happy to accept that.  Her first teacher accepted her just as she was.  The class was small in numbers, quiet, roomy and positive.   My daughter was happy to go to school.  Most weeks we got some positive feedback.  Slowly, the feedback seemed to be about her writing.  The teacher told us how my daughter wrote the most extraordinary stories.  They were outside of the box.  My daughter would also include the most detailed, pictures.  As a family we experienced success at school in the form of positive feedback from the teacher.  As parents we felt confident that the teacher valued our daughter.  She could see her special talents.

Towards the end of the year, while walking towards the staffroom, the teacher gently said "I think your daughter may have Autism".   "Thank you, Yes, we now think that too, we will go ahead and get a diagnosis, do you know how?" We felt supported because all year the teacher had been feeding back to us positives.  The news that our daughter may have Autism was well received because of the relationship we already had with the teacher who clearly accepted our daughter and saw her strengths.

Tara O'Neill

A Point of View

A Point of View

Before I had a child labeled Autistic, I thought that parents of children with Autism were unskilled parents.  Since my eyes were opened, I see parents of children with Autism as amazing, dedicated, strong, resilient humans, raising equally amazing, talented and welcomed humans.

There it is - Before and After. 

Before I couldn’t see out of my tunnel.  I had no idea, I had no experience, I had no understanding.  I had a lot of judgement and ignorance.  I wasn’t a bad person, I was just one in a tunnel.  I couldn’t see what I couldn’t see. 

After I could see.  I had compassion, understanding, empathy.  I wasn’t a good person, I was just out of the tunnel.  I could see. 

As humans, we sometimes make sense of the world by using our world.  We look out of our tunnel and explain a world without a tunnel like our own.  All we see is the reflection of our own walls, our own thinking and our own feelings.   Worse, we let these images, these ideas and values limit us and confine us to the known.   They also confine others.

I feel the stares as my child screams behind me as I walk into school.  I hear the rumors of how I am a bad parent.  I remember the misunderstanding of family, the silent dismissal of others who can’t understand. 

 I experience with incredible gratitude, the kindness of one who understands.  The words they speak that put my world into a reality that feels like I can survive.   The way they listen, the time they take and the love they show.   I appreciate that they can see where I am. They can understand why I am and who my child is, even though they are not in my tunnel.   How grateful I am to them.  They change my world.  They change my child’s world.  To me they are superstars.

By Tara O’Neill

2014