Friday, 9 December 2011

To be in my shoes........

This letter was written on an Autism website.

I can wholeheartedly relate to it........

Dear Parents of Special-Needs Children I’ve Taught In the Past,

I need to make a big apology. You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.

I didn’t know. Not even a clue. I thought, mistakenly, that having two special-needs children in my family made me more sensitive to your needs as a parent. It didn’t. And I’m so sorry for operating under the assumption that I did. I’m not attempting verbal self-flagellation here. I meant well. I knew a lot about autism and some about other special-needs conditions. I did care about your child. And I did want to do right by him. But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class. I thought being extra nice and seating her at the front of the room was what you needed from me.

But you needed more. And I didn’t understand that. You needed communication. A lot of it. You needed me to understand your depth of worry. You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child. You needed me to understand that I was teaching your child, not an I.E.P. You needed to know, not assume, that I would go out on a limb to make sure your child’s needs were met all over the school and not just in my classroom. You needed to not worry that, when your back was turned, I was still doing everything that I promised as well as thinking of better ways to meet your child’s needs. You needed to talk about your child in meetings and not worry about the clock.

I know better now. In just a few months, I am going to be placing my special little boy into the hands of the public school system. Because he is non-verbal, I will have no way of literally knowing how his day went, if he is being treated well, and if those to whom I am entrusting his care really do care about him. This kind of fear is paralyzing. And more so because I know just how little training (read almost none) that most of the staff in a public school have in dealing with children like my son. They, too, will mean well. But they won’t know. They won’t get it. I now know why you carry The Binder of Epic Proportions to every meeting. Mine is getting bigger by the day.

I look back now at all of your children and wish that I had picked up the phone more, written quick notes home more often, challenged your child more often rather than less, and make you feel certain that someone else loved your baby in your absence. For that, I’m sorry. I promise to do better for those kids in the future. I promise to not assume anything about your child’s unique situation and needs. I won’t just react to bullying of your very different child. I will actively be on the lookout for it. I will remember your child and her possible confusion on activity bell schedule days. I will take more time each day to get to know her. I promise to do my best to push, cajole, educate, and even take to task my colleagues who don’t get it in the years to come. I pray that teacher training will improve in the future and that my son will reap the rewards of that. And I hope that I am just as patient, kind, and understanding with his teachers and schools as most of you were with us.

And those of you who weren’t? I get you too.


Your Child’s Former Teacher

Wednesday, 7 December 2011

Emotional rollercoaster Number 432321

Today I took Amelia to look at a "special school".

It was hard.
Very hard.

It is something that you never expect to do when you are pregnant with your first child.

In front of Amelia I was happy and relaxed.

Inside my mind I was confused and emotional.

I wanted to cry but could not exactly work out why.
So I just swallowed lots.

I wanted to show Amelia the school.
I wanted to give HER the chance to see others similar to her.
I wanted HER to tell me whether 1 day a week next year is a good idea.

I explained this before we went.
She was genuinely excited !!!

EMOTION 1 : for me...... being there with her.

We were shown the classroom Amelia would join.
She was invited to participate in the activities.
Initially she chose to observe but as I was leaving to have a cuppa she began to join in.

EMOTION 2 : Observing the other children in the room.

The smile on her face was huge.

EMOTION 3 : Realising that she was one of them.

This emotion hung around for a while.......

Acceptance can be difficult.

Amelia and I love her "mainstream" school and she will not be leaving it. But I think Amelia needs to be given the chance to interact with others like her.
To become familiar with an environment that may be full time in the future.

All of the children were intellectually normal but their physical skills were prohibiting them from functioning at a "normal" level.

They were social towards Amelia.
The staff were extremely welcoming.

EMOTION 4 : Accepting that your child would be "happy and comfortable" in this environment is confronting.

But it is also comforting.

Seeing other children struggling but still enjoying themselves was obviously attractive to Amelia.

Next week she is going to spend a few hours there again ........ without me.

To give you an idea of what "Amelia thought"........
When I came back to see how she was going she spoke some words.
Everyone thought she said "Don't forget me".
Knowing her language better I understood what she said.

"Don't get me".

She didn't want to leave.

Even though I need a REALLY good cry right now I know that I have been strong in investigating something that is good for Amelia.


Sunday, 4 December 2011

12 months ago.....

This week will be 12 months since Amelia's hospital visit.

5 days of tests that changed our world forever.

We were admitted on December 6th and discharged on December 10th.

On that final day we were told to "go home and cherish what time we had with her".

In the past 12 months so many amazing things have happened BUT I will never, ever forget that week.

Staying in hospital with Amelia the entire time was difficult.
The showering, toileting and food.
But it was nothing compared to what happened to Amelia.

Holding my child down for many tests and then slowly hearing information that will devastate and change anything I ever thought.

The tears were endless.
I told Amelia it was because I was tired.

My memory is not very good, BUT I will remember every single moment of those 5 days forever.

When we arrived home I did not cope well.
The tears would not stop and my body felt lifeless.
I wandered around the house in a haze.

Today we set up our Christmas decorations for 2011.......
Amelia has not stopped asking to do it for 10 days.
Last year, she also insisted we decorate after we arrived home from hospital.
Amelia had no idea about what A-T was.
She just knew she had it.
Scott and I had to dig very deep to find the energy and happiness Amelia wanted to get ready for Christmas.

I was going to also mention tonight about all the wonderful things that have occured in the past year.......
But I can't.

I think I need to just work through my memories.
Remember the week we were told our 7 year old daughter had a terminal illness...........