Sunday, May 12, 2013

Through the eyes of a stranger

Our favourite place 7am

This weekend has brought about the quiet realisation that my son is profoundly autistic and also has an intellectual disability. I, of course, have always known this in the back of my mind, however, it is not something that I have wanted to think about too deeply. Let's face it, there is always the hope that something miraculous will occur in order to make him more like his peers.

It is not going to happen. Nick will never be like his peers. Am I okay with this?

No, not really......

Whilst I accept Nick for the person that he is, I still mourn for the person that he could have been. 

I mourn the fact that I have to make provision for his future. I have to be prepared for all eventualities because as it goes, he will outlive me and who will look after him when I am gone?

Our favourite place 9am

On Friday we went to visit a residential facility that wasn't very far away from our favourite place. In fact we planned the visit to coincide with our weekend at the cottage.

As we drove into the grounds of the facility, we were immediately struck with the peacefulness of the surroundings. The Manager was a lovely woman who genuinely cares for the people who live there. She spent over an hour and a half with us, explaining how the facility was split up into areas of ability (gulp) and how the days were structured in order to be productive and meaningful for all.

We wandered around the grounds, visiting the different houses that catered for the residents. We were blown away with how happy everyone seemed and it was reassuring to see they were treated respectfully by the many staff. 

Nick was not happy and showed his stress by continually tapping my shoulder and saying "car". In all fairness, we were there for a long time and he was included in the walk and talk. **Woohoo, love that he can now say "CAR"**

Our favourite place 10am

It was hard not to observe Nick through the eyes of the Manager. From her perspective I could see my boy's limitations and his inability to integrate with the other residents. Through her eyes, I understood why she took us to the residence that looked after people who had high needs. Through her eyes, I understood why she placed particular emphasis on the fact that they did have residents that were low functioning (her words, not mine).

I observed the Manager watching Nick and taking note that his stress level was actually not that bad. Through her eyes, I understood that she would *consider* placing Nick on the waiting list. Through her eyes I saw Nick sit with the residents and to which she exclaimed, "oh, he does look to be social!"

However, through my eyes, we hit a snag. If Nick was to be placed there today, he would be unable to participate in any activity that is organised for the residents. He would be totally dependent on the adults around him. He is only able to communicate with those nearest and dearest to him. I can only but imagine how scary it would be for him to be left there without us. Yes, the facility is for intellectually disabled adults, however, Nick is autistic and the facility does not cater for autism, although they were quick to say that many of the residents had autistic tendencies

Regardless of the fact that they don't know autism like I do, I will still be applying for a place for Nick. It is my Plan B as I have to ensure that all my bases are covered. If he is accepted onto the waiting list, I have at least 10 years to work on Plan A.

Our favourite place 12 noon

There you have it. A few reflections on the reality of our life!! :-)



13 comments:

  1. My heart was breaking reading this, for once I'm really lost for words. I think you're very brave and very adult to be doing this, but it sounded like a really really hard thing to do ((hugs))

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    1. Blue Sky, it wasn't hard at the time, however, it has really hit me now.... that I even have to think about doing something like this. Sucks.

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  2. I can't imagine how hard that all must have been for you, and my eyes watered when I read the part about Nick saying 'Car'. But it is good to know that your first impressions of your Plan B are good and that the residents are happy and well cared for. And although they don't cater to autism right now, there is a good chance they will in the future with autism so on the rise. Just see if he is accepted to the waiting list. You have a decade to come up with a Plan A but in the meanwhile you have a solid Plan B.

    A big hug for Nick and for you, his very brave mother.

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    1. Thanks for commenting, Dana. It really was a nice home and also very close to our favourite place. But, wow, I really feel the need to stick my head back into the sand because just thinking about Nick in ten years time is very hard.

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  3. I can't imagine how hard that visit must've been. It is one of those things we never want to think about. But of course we must.
    I admire your courage. It is good to get all your ducks in a row first, and then push all those unpleasant thoughts far to the back of your mind :) that's what I do anyway.

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    1. Sophie's Trains ~ I so wish that we didn't have to think about it. Yes, that's it really... getting all my ducks in a row. Damn ducks!

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  4. Gosh that sums up how I've been feeling recently. Henry is, I think, quite similar to Nick - sociable, happy and calm most of the time, but with learning difficulties that are masked by his general air of sparkiness. I was interviewing at our local special school last week and was struck by the fact that even the seemingly 'most autistic' kids in the classes I saw were way ahead of him (admittedly they're 4 or 5 years older, but even so...) He has never 'fit' easily into a group - he's too sociable for severely autistic groups and too learning disabled for the MLD groups that would benefit him socially. I can feel a blog post coming on...
    He also says 'car, car' repeatedly when wanting to leave somewhere, so that part brought a tear to my eye. And is also completely dependent on us for his communication.
    Not quite sure why this is listing me as 'anonymous' - it's me, Sue, from movingbeyondthelabel!

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    1. Hi Sue. Oh crumbs, our boys do sound alike! I think that we need to compare notes more often! I look forward to reading your blog post. Thanks for stopping by. x

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  5. When I saw your cutting carrots video I was really struck by the similarities - lovely, as I rarely come across other young people who are like Henry!

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  6. Oh, big hugs Di. Sorry it took me so long to get to reading this. So, so difficult but such a brave, strong mother you are.
    You are right to look ahead, you have to but it is heartbreaking.

    ((xx)) Jazzy

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    1. Thanks for stopping by, Jazzy. I was okay on the day, although it did hit me a few days later. So wish that I didn't have to think about the future! Such is life, hey! xx

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  7. Ah yes I recognise these thoughts. It does look a beautiful setting though...

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    1. @alifeunlimited ~ I guess we all have those thoughts at some stage or another! The setting is beautiful, although it is not actually where the residential home is... around 1/2 hour drive away. Thanks for taking the time to comment.

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