Wednesday, 2 November 2011

Amelia, A-T and friends.....

Today was Amelia's first day back at school after 5 weeks holiday.

Tonight we have had to have one of "those" discussions.
A discussion where Amelia has overheard other children talking about her A-T.

It was a very innocent conversation about Amelia having a "disease".

Thankfully she spoke to a very reliable staff member and we have been able to address the matter at home.

When I asked her if we could talk about what she had heard she replied "we will talk about it later".
She maybe needed to process the word and what she felt about it.

A few hours later I raised the subject again.

"I have not got a disease" she snapped. "you cannot catch it".

So we talked about a lot of diseases you cannot catch like daddy's diabetes.
I explained that some of the doctors call A-T a disease.
Other people cannot catch some diseases, we are just born with them.

"Well they shouldn't be talking about my A-T. It is none of their business" she snapped loudly.

I explained to her that I disagreed.
If her friends were going to understand her differences then they also need to understand A-T and how if affects her body.
We talked about how some children are shy, wear glasses, get angry easily and are very short.
Everybody has differences.
Amelia's difference is she has difficulty walking and talking.

Wouldn't she like her friends to understand A-T and how it affects her?

"No" she said." I do not want them to talk about it near me".

So we discussed the close friends who do understand her, treat her normally and she loves.
I said I believed that they do understand Amelia has A-T and she needs a walking frame to help her. They are also very patient while taling to her.
If all the children understood what A-T was then there would be no whispering or wondering.
They would just know.

Then I asked her "Do you know how A-T affects your body?".
Amelia then pointed to her head and said "there is something wrong up here telling my body what to do".
I corrected her and said "not something wrong. Just the messages get confused".

I finished with "and always remember that there will never be anything different about the clever, thinking part of your brain. That part will always work properly."

Hopefully she will become more confident in teaching her friends about Amelia and A-T.


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