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:)

Wednesday, December 5, 2012

Oaties self portrait

Here is Oaties drawing of himself:)

I couldn't believe his portfolio it is brilliant, I am so proud of him and his sibs who also got stellar school reports.... Oatie did better that we thought he would which is just brilliant...

Oatie is loving his ice skating and his bi-ski has just been delivered.. his new aide is really nice and getting over his toilet phobia (with a bribe of a magic 8 ball), it's noisy and annoying so naturally kids love this thing!

his baby sister is doing great too:)

This Saturday I am hoping to resume his ABR so keep your fingers crossed....

Thursday, November 29, 2012

Cerebral Palsy Christmas party

We had a brilliant time at our local cerebral palsy Christmas party, it was a really great time.

It was held at a dinner theatre, and it has the most wheelchair accessible venue I've EVER seen, a wheelchair could go at any table or seat... it was lots of ramps all over like a maze it was brilliant.

Santa was there and there was a candy bar... and a crafts table and it was a great party which everyone had lots of fun.

This week is a busy week with skating test days, and baby appointments and piano tuning appointments and parents night at school.... lol!

Tuesday, November 27, 2012

Aide we go again....

Well since September, we have had a few aides for Oatie. The first and 4th on was really nice, but her mother was ill and has now retired from the school year on compassionate leave, poor lady... feel for her with that.

The next was a guy, he was super happy but had a different idea of safety compared to me, like he'd put Oatie on slides etc... and that would be fine, but this was like a 16ft slide and metal and Oatie doesn't have the core stability like other kids his age not to fall back and smack his head.... he also gave Oatie a toilet phobia...

Then we have the temp fill-in from the school, who is the BEST so far, she has filled in on and off since September and Oatie comes back happiest he has a good time (safe) in the playground... and he goes to the washroom on the toilet not the potty with her and she is always smiling, even when she tells kids off apparently...

So Aide we go again... the worrying part is that they put the advert for Oatie's new aide out to parents, which might get another NAFF experience like we had when he was in preschool with a person who just wants some money,... rather than a person who has chosen a career path helping people with challenges which is a totally different thing for me...

The bad experience he had in preschool was a parent... all the nice aides he's had are all along the path of special needs of some sorts...

Thursday, November 22, 2012

Oatie can from standing fully squat and then stand up again! like seriously!

yes, yes yes... you read it right.... Oatie can go from standing and fully squat and then stand up again and then go back to a full squat and stand up again.

He can now walk around the house much more and spends very little time crawling around... he's such a beautiful kid!

Tuesday, November 20, 2012

Oatie's new Wheelchair!

Here is Oatie's New Wheelchair, he was going to use it just for going on the school bus... but he likes steering it and having independence.... so I'm tempted to take it out shopping with us, so he can then go where he wants to go, (like his walker) but this way it won't damage his legs like he walker will.

We still want to follow the ABR route as much as possible and so I always pack the walker, so Oatie can see it and knows there is a "choice" but then for distance he's usually pushed in his stroller.

Wheelchair "driving" test... my older two make a variety of mini exercises for Oatie to practice this is just two of them. These are for 360o's so he can practice pushing and pulling.

There is a go down an incline and then stop... and a steering test too. All the kids had great fun :)

Wednesday, November 14, 2012

How heavy is the wheelchair?

Seriously! How heavy is the wheelchair. Oatie has the most basic one that you can get... it's the only one that or healthcare system would contribute to... and it so heavy!

It's wheels and a basic frame... there isn't really a seat it's a hammock... and nothing to the back rest... the wheels do come off but that's not the heavy part... I'm no wall flower either... and even Oatie's temporary aide who was a man said it was heavy.....

I lifted it once during pregnancy with my eldest and I wished I never had... it wrenched all my ligaments under my bump and i hurt for an entire week... so my husband has kindly (I am happy about this) forbid me to lift it until I have recovered from kitkat...

I have looked online and there are aluminium rails that you can unfold and wheel it up that way, my husband said that the amount of force to push it up that is worse than lifting it...

You would think in this day and age that they would make them lighter... I understand that they don't want them tipping back or forwards... but his wheel chair has the stabiliser wheels at the back... anyway as without it tips back.

I should be grateful as at least it's cost share with the government... and I should be grateful that they LET him have a new one... but it still weighs a tonne!

AND it is rubbish in the snow! does anyone have any good tips for wheelchairs in the snow? it's snowy here for 6 months of the year....

Monday, November 5, 2012

I'm a special needs momma and....Blogger and Apple I wish you'd sort it out lol! I'm not interested in your techno wars....

I don't know about you, but every minute in the day is special to me... either awake or asleep!

Well i lined up lots of blog posts, which was automatic, it said it was scheduled but well whatever, you guessed... they didn't end up automatic and If I post them now they will be all BACKDATED for the past few weeks! I just wish that Apple/google would sort it out.... I don't know about you, but I don't really give a dime about their techno war.... I just want the technology that is out there that is compatible (by force) to just WORK in harmony... and stop this competitive rubbish of whose tablet can sing and dance!

Well you can look forward to the store of blog posts that I wrote in the days before "KitKat's birth".

Yes my little kitkat is here! very excited and she was born at home, and the midwife came with 30 minutes to spare... only because I thought she would be called out to someone elses birth and we live 45 minutes from hospital that I knew we'd never reach.... And yes to egg the labour on I was out at a rink just 3 hours before I gave birth watching my eldest 2 ice skate... it was on doctors orders... as he said at our last scan which was 12 hours before ktikat made her entrance... that do something stupid. financial loss or insane to get her out... so that's what I did, I went to 2 ice rinks with contractions!

Saying that, she LOVES the rink... and she is also going through the night... reason for stacking up my blog posts was that!!!! she basically feeds throughout the evening and then sleeps from 1am to 9am! each night since she was 2 weeks old....

I don't know how long that will last... but I am enjoying it while it does! as you know it could all change just like that....

Oatie is a super big brother as we knew he would be...

He has still been clean and dry for months now! the only problem is that he has a toilet phobia at school induced by his AIDE!!! yep THANKS FOR THAT - hope you detected the sarcasm!

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