Tuesday, December 11, 2012

No manual ABR yet :((

We had a bit of a turbulent time with a family member recently, and well it was a bit of an eye opener, especially when someone has a mental illness we believe.

Because it's not visual, you don't tend to notice it.

Somehow I have to gather up what I have on Cerebral Palsy and do a mini presentation on what CP is, which funny enough to make it concise for then someone to translate (I might use google translate to help lol!).

How do I explain Oatie, he is what you see and what you see is what you get!

Today he went on a field trip to a heritage centre and we almost didn't let him go as in the past they haven't cared for him properly. Only one other Aide did look after him properly and we still visit him each time we got to Montreal he's a top bloke!

So Oaties dad phoned the school this morning to make sure that they would look after him properly! he was tired as you would expect, but he had a good day and came back in one piece, whether he had an illness relapse we'll find out, but he did love the outing! It was his very first one that I wasn't 3 minutes away or with a sibling... so he was a big brave boy going on the bus and his school best friend wasn't there either so it was a challenge I suppose for him.

He couldn't tell me about his day, he could answer if I asked him direct questions... he said he loved the blue swing and he had fun. That's all I know of his trip. I know he had fun and that's all that matters and his pants came back dry so that was good, meaning he wasn't distressed....

Sometimes when I look into his puppy dog eyes, I get all choked up, as I know there is so much he wants to say but can't express yet... each year his speech gets better and better and more spontaneous... but he obviously had a great day but can't express that in words.... yet. And with that the bit that makes me choked is that at times being him must be lonely.

From my own experience of not being able to talk for 2 weeks after the surgery, I felt lonely... I'm a touch typist a PA for a career... so I type fast, I had a fantastic app on my ipad and iphone the app was called "Speak it" brilliant, so I had a verbal voice even when I went out shopping etc.. and you can pre type sentences or as much as you would like and then press play etc etc...

but even with that I had to be near my ipad or phone or a pad and pen to communicate... and at times it was frustrating and in the end, I only communicated my important thoughts... the nuances of your day, the snippets of news etc... became a hassle to communicate... The only time was when a friend who has the patients of a saint would sit with me and have a conversation and wait for me to type back on my speak it and vice versa.

During this time, The upside was one of the mothers at skating is deaf and so we bonded and gelled on a different level (she liked to read my ipad speak it)and one that I wished I had taken the time to sit with her more as we had really decent conversations, really in-depth and she is a most interesting person.... etc and became good friends. But if i sat there ordinarily with my ipad to speak to her she would be offended... (she has hearing aids and likes to not draw attention to her hearing deficit).

So i look into my Oatie's eyes and at times sees loneliness and sadness.... he's used to his brother or sister starting a train of thought from a field trip and then Oatie would run with the story....

I will try and ask the aide if she could jot down 5 things he does each day, as conversation starters.... so that way I can use those to ask him about his day so he get's that practice/skill to converse in that way.

I find that because in some ways he's 2 years younger than his age... that when kids usually acquire skills, he doesn't naturally acquire, so its almost like you have to teach the skills that the others naturally picked up.

That's why I think the dog would be so good for him as he will have his pal by his side. someone who will just love him, and not bully him..... and someone to be there when I, his dad, or his siblings can't be... so he doesn't face life outside the house alone.

Some people have blanched at the idea of a dog on top of 4 kids and 5 cats... but I say that the dog will be our 5th child... and might be more work for me, but I think the benefits for Oatie will be HUGE!

Well our littlest one had her 2 month jabs today... and they update your adult vaccines too (well i never! would have thought that they did that) well I quite liked the idea of it, my sore arm is thinking differently... but I got my tetanus booster:) something I was thinking of getting around to... and haven't... so that was good:)

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...