The difference of one

"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."

And there it is, one of those special people walks into my life.  A life saver.  

What makes them so different?

Session one, they listen.  They don't judge.  They don't comment.  They don't label.  They don't blame. 
Their body language is open.  
They reframe.  Session two, they start to add in context.  
They make links to my mess, they join the dots.

From my point of view I can sense the difference.  It is tangible.  Even without words it was tangible.  Even the first meeting.  Prior beliefs are seen in body language before words are even spoken.  

Then the linking of ideas.

For example - It is not the  behavioural approach  or..................    it is behavioural approach and..........  
Medication works in context.  It requires the environment to be working as well.  (Ecological theory).  You can't just rely on the medication to be enough.  If the environment is working then the Medication can do it's job.
Teachers need to spend time with Miss A, just being and building relationship.  Not doing any new learning.  Spend time in play with her and others.  
We will reframe the behaviour so others can understand it is not being naughty.  A strategy to help a team to understand.

Here are two really important keys here for us as practitioners.  

1.  Our delivery of knowledge is just if not more important than the knowledge itself.  You can't have one without the other.

2.  The ability to listen to people, and then bring them new information from where they stand takes real skill but is very powerful. It is affirming.  Start from the person's belief and then put that belief, those ideas, in context, move on to the next new learning creating a link.  

I begin to understand that it is not knowledge alone or practice alone, but the ability to link the two in context of the team supporting the individual.

Help I'm drowning

Help I feel like I’m drowning.

I went to get help, but I forgot that getting help requires energy.  Everyone wants to hear the story.  And then the questions start in your head “Is it my fault, is she like this because of my bad parenting”.  

Miss 7 years old and her meltdowns have increased in frequency and in intensity.  I don’t know what to do now.  The recommended way of dealing with anger and hitting by a child “time out” isn’t working, she is going from 0 to 10 in an instant.  She is throwing things, rampaging, she is very angry.

I went away for the weekend for work and I walk into her having a session.  She has been at Gran’s for the weekend.  Everyone is trying to sit around the dinner table to celebrate Gran’s 75 birthday.  Apparently nothing happened, she just snapped.  She is out side, pulling plants from the garden.  I sit down for my lunch.  Miss 7 comes in, continuing her rampage, knocking over a pot plant she runs down to the bedrooms and starts to throw things around.  No one can stop her because no one can hold her.   Unbelievable you think?  It is true, we have tried.

At CAMH’s (Child, Adolescent, Mental Health Service) the next week, my husband and I sit with the person we have seen for over a year on and off.  He has a thick file in front of him.  We share what is happening.  During our conversation we have to remind him of details we have told him many times.  We ask… “Could it be triggered by the medication? Could we see a Psychiatrist?”  The answer returns, “no because we don’t have one at the moment”.  Where we live no one wants to come and live, so Doctors fly in from Auckland, but the one at the moment we normally see is on long term leave and the other, ‘well, they are only giving her ‘easy cases’ so she doesn’t leave and our case is not easy.

“So there is no one to ask if this is made worse by medication?”    “NO”.

We agree to drop the dose anyway.   

So I ask, “you still haven’t answered my question, what would you do if your child was rampaging at 7 years old?”   The answer is cagy.  He suggests we work on the positive side since the consequences are not working.  So we discuss ways of ‘noticing her’.  Basically, he can’t help either.  And he informs us that the service is down 5 or 6 Psychologists.  They just can’t keep them, they leave with stress.  The ones they have are dealing with ‘worse cases of suicides’.  I laugh out of shock, “well our 7 year old given another couple of years will be there, so I guess we will be seen eventually!”

Later we hear that we can go and see a clinical Psychologist in a fortnight who will mark the latest behaviour assessment filled in by teachers and met the 7 year old.

Meanwhile, we were accepted by RTLB in partnership with Special Education.  The RTLB has been in and observed.  The Special Education person comes next week.  She has just moved from CAMHs to Special Education.  She comes highly recommended, not that we have any choice.  We are told that we are ‘lucky’ to be accepted by the service and it is unusual to be accepted so quickly.  

Here’s the thing I forgot from the last time I travelled this crazy roller coster… each service has forms to sign and new people to meet.  And each one wants to here the story and wants to know what you want them to help you with.  How do you tell 7 years worth of mothers intuition.  Where do you start?  What parts do you tell first?   And then you feel like you are so ‘lucky’ to get help that you don’t want to offend them and scare them away.

And all of this comes on top of continuing to deal with stressful behaviour.  It is tearing at the family.  It wears down your ability to respond to your partner of 26 years decently.  You go into survival mode, you look for things that you can find respite in and often this is work for me, seeking knowledge.  But it could so easily be drink and sometimes during the worse sessions it becomes food.

It takes resolve to keep perspective.  Even remembering how we made it through for daughter number one and how wonderful she turned out becomes hard to believe.  I do remember the effort required to find the services and help to achieve that.  

Each day becomes a walk of faith.  Moments upon moments, I keep positive, I remember to praise Miss 7 because in the end, that is all I can actually do at the moment.  I remember to hug her and tell her I love her even though every thread of me is tired and love is such a momentary word.   And I remember to breath because I am holding my breath, no major meltdowns for 4 days.  And I hope there will be no more, even while preparing for the next.

And the feeling of drowning occurs in the times that I stop and reflect.  I am grateful for my faith and my strong family.   I am grateful for help that we do have and for study and knowledge.  And for the experience which can only make us all stronger, more understanding and filled with a life with things that count.

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