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.

Sincerely,

Your Child’s Former Teacher

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.

xxxx

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...........

xxx

Tastes good

To really confuse my body, I joined the family for dinner tonight.
They were ordering Chinese and I decided I needed a treat.
Even though I have lost 5 kg in 11 days, I still loved every single mouthful.
The taste is so powerful when you have been deprived of any taste for almost 2 weeks (and watching others enjoy it).

I would appreciate it if you didn't tell anyone....... but I had 4 chocolate balls, 2 hours later!!
OMG !!!! They were awesome.

Back on the diet again tomorrow.

I have not blogged very much recently because I have been feeling flat and unhappy.
Unfortunately my survival depends on sweets, chocolate, coffee, tea and anything I want to eat.
But that is also why I managed to reach a very heavy weight.

Amelia has also been unwell and sad.
Except she HAD to go to school on Friday to "present" her project.
Something that she put so much effort into.
She was so "proud" of her masterpiece.
The staff also had her making chocolates on Friday, so she was happy at the end of the day.

Tom?
An issue I have working through recently is that he is going to school next year.
After my emotional breakdown at the first school orientation, I have come to realise that he has helped me stay positive this year.
Instead of dropping Amelia off at school and then coming home depressed, I have still had our other child in my full time care.
He is so talkative, active and creative, I have had to "hold it together" for him everyday.
I felt like I was going to lose my "little buddy" who has helped keep me sane all year.

But there are also other interests in my life that will assist me to continue on my positive path.
I am fanatical about an "organised" house.
I feel that when my house is organised I am relaxed in my mind.
With Tom at school I will not have an "imaginative" area set up in EVERY room of the house everyday.
It has been fascinating watching him move between building, hairdressers, a resturaunt, a fishing boat etc etc each day.

I suggested to Scott that I wanted a labrador puppy.
A new friend.....a baby to look after......a friend for Scamp.

Some of you may remember our Barney.
He was our labrador for 7 years.
He was our first child.
We adored him.
Barney was almost human in the way he understood everything I said to him.
He laid with me when labour began with Amelia and then again with Tom.

I cried for a very long time when he died.

I thought a friendship like that would help next year.
But I also believe Barney was "one in a million".
It would be very difficult to get such an obedient, loving, loyal dog like him again.

I thought about pursuing the idea of writing a book, getting some paid work and maybe just having some "me" time.
But will "me" time send me into depression ?

I have begun thinking about Amelia for next year too.
Grade 3 gets much harder.
At some stage I am going to have to start seriously thinking about what is best for her.

It is so hard because I do not know what is best for her.....

At what stage do I begin intergrating her to a school where everyone has similar strengths and weaknesses as her?
A school where there is two staff members to nine children.
There is one nearby that has a class where everyone is her age. They are verbal, social and 60% of them are still walking, 40% are in chairs.

I absolutely adore the school she is at now.
It is the one Tom is going to next year.

But when is the right time to start getting her used to and comfortable with a "special school" ???

Amelia has a degenerative disease.
She is going to get worse.
She is already getting worse.

I do not want to move her abruptly when she is already struggling, coping with the change within herself.
Adjusting to ANY new school is hard.
I want to do it once or twice a week over at least 2 years.

I think that I may need more Lindt chocolate now.
I have got myself upset.
But as always, it is another issue I need to work through.

And I will.
I am a tough cookie !!

Thank you for listening.

xxx

Warm and fuzzy

Feeling very warm and fuzzy right now.

Amelia has invited a school friend to stay tonight.
This little girl is new to our lives this year and she is absolutely beautiful.
She treats Amelia as an equal.
But she does things that she would not have to do with other children.
When she is talking to Amelia she says her name and waits until she knows Amelia is listening.
A child of 8 years old that is so patient, caring and accepting makes me very emotional.

I regularly see children talking to Amelia loud.....slow.....and over pronounced at school.
When I have discussed it with Amelia she says "I hate it".

This little friend knows that Amelia is just like her.
She just needs to focus her attention on you to particpate in conversation and games.

Absolutely fascinating to watch.

xxx

Some happy news ........

At the moment I feel like I have taken a valium.
My whole day is in slow motion.
I have no caffeine or any kind of substance in me to make me move and think faster.
Today I looked at my speedo on the dashboard of my car because I felt like I was doing 20km/hr.
I was travelling at 60km.
BUT......
In 2 days I have already lost 2kg.
The diet explains that you lose a lot of built up fluid and toxins from your system in the first few days.
I am looking at my urine and it actually looks like wine !!!!!!!
(sorry for the visual!!!).

Anyway, today I was told that Amelia has come back a different person from America.
Her teacher said that she is doing really well.
She seems refreshed, happier and has more energy.
(I tried to refrain from explaining what she is currently like at home but couldn't help myself !!).
It has made me smile to know that some of the "old Amelia" is still alive.
I miss the constant smiles.........

Yesterday Amelia and I started and finished a project for school.
Sorry, I mean Amelia pushed me away and told me when to come back and help her.
She did not like any of my ideas.
I was just a slave doing what she told me to do.

She LOVED making this project.
It reminded me of her enthusiasm to complete projects last year.
So, I have decided that we are going to try and do 1 project a fortnight.
Something that is beneficial to her learning.
First on my list is money.
At the moment she has no idea about our currency and what it is worth.

I am looking forward to helping her learn life's basics because up until now she has not been co-operative or enthusiastic to me trying to help her learn.
I have found a way that she likes so I am happy about that.
Hopefully Tom will want to join in too.

And finally.......Tom.
His NEW favorite word is "Desperate".
"I was so desperate to get that chocolate".
"I have been so desperate at Kinder to get "the star of the day" ".
"I am looking desperate mum".

Had me laughing all afternoon !!!!

xxx

Very bland and boring.......

Tonight I come to you a very different person.

Bland and boring.
(although some may say there is no change then!).

I have begun the diet from hell.
It works.
After losing an average of 2 kg a week 12 months ago, I know it does.

Then Amelia was admitted to hospital and our whole world was turned upside down.
On day 3 I ran down to Macca's on the ground floor to begin my emotional eating.
Best chicken caesar I have EVER had.
On Day 4 the beautiful Donna brought a bottle of wine in for me to drown my sorrows.
End of diet.
But the 11 kg I had lost stayed away for a few months.......

So now I begin again.......

My motivation ???

90% of my wardrobe no longer fits (even some of the America clothes).
I am soooo tired all of the time.
I have always wondered what it was like to be a yummy mummy.
(do not laugh....I have !!!).
And finally Queensland in January.
We are going to stay with a gorgeous friend (and please take the word gorgeous literally) and her 4 beautiful daughters.

Now the older 2 girls are in their teens.
They are taller than me and have figures like supermodels.
The mother ?
Well you just want to hit her on the head with a hammer.
Drop dead gorgeous and absolutely no indication that she has carried 4 babies.
So.....to avoid getting rolled out to sea to join my "whale" relatives, I am aiming to look ........ thinner.
Plus it will make me feel good !!!

So I will now begin writing with no caffeine, alcohol, sugar, carbs OR chocolate within this unhealthy body.

Let me begin with my "little cherub" Amelia.
She is currently behaving like any 8 year old girl.
Her behaviour is stubborn and defiant.
She will not co-operate or help me.
Amelia needs a lot done for her or at least extra assistance with any task.
When her behaviour is like I have mentioned, it makes EVERYTHING difficult.
She is yelling at me rudely and storming away constantly.

BUT she is falling over a lot more.
She cannot stand without losing her balance.
She can no longer "spoon" most foods into her mouth at meal times.

Ataxia Telangiectasia is a very cruel disease.

My other "little cherub" Tom, is behaving good then bad, good then bad.
I cannot keep up with his mood swings, especially his angry outbursts.
But when he is nice, he is very very nice !!

And Scott, "the big cherub" ?
Plodding along as usual.
No change in HIS behaviour.
Thank goodness. I cannot send him to his room !!!

So now I will go and wait to begin bouncing out of bed again once all of the "toxins" are flushed away (with my 2 litres of water a day !!!).

Amanda
xxx