Wednesday, May 30, 2012

Adaptive Bike, Adaptive skating oh and the School Buses with no Seatbelts Take II

I rest my case, if you really really want to kill a conversation, or get rid of people... don't eat baked beans... just talk about school buses with no seatbelts!

So many things have gone on, I can't blog fast enough.

Well it's a few months wait for the school bus safe wheelchair and his new walker.

Oatie has been busy getting Bike fit for his 1km bike ride... he's almost raised $1000 for his bike ride, which is AMAZING!

We went skating, I can't find the photo of him from Sunday, so here is another one from a few weeks back. He asked to go ice Skating so we took him. He had a great time as usual.

Oatie's dad has taken a different job so he's working full time in town, so Oatie has been going to the Gym Creche which had no problem taking Oatie in... well it was nice as one of the ladies is also his ice skating instructor from the fall so he LOVES seeing this lady.

She was very impressed that he likes to skate out of season too.

My throat lump doesn't hurt anymore when I swim... it's almost taken a whole year for the post surgery pain to go... but at least it's gone. I can't talk over loud noise or shout... and i have to really look after my voice, but at least I have one!

Oatie has been enjoying playing a bug game where you hold a mini fishing rod style stick with a spider+ magnet and you have to catch the bugs of a vibrating platform. he manages to get them all and has a great time playing it.

He's been keeping his potty training up too. The ear muffs stopped the painful ears with hockey pucks...

Today he drew me a drawing on his sketcher...

Oatie erased it so he re drew it in one minute flat... but it was a great drawing of mountains and a river... he said he's missing skiing.

Oh and the bus... WELL... my elder two and many other kids if not all of them in the bus were thrown from their seats into the seat in front. At first I thought this happened at 100km per hour.... or something as they said that they got hurt.

It was the level of hurt that Safety Council Canada and Canada Transport say that they kids should feel at 100km speeds...

Well, the driver went to pull out of a junction from standstill, and then saw a car that was in his blind spot so stopped suddenly. The bus hadn't even got any speed nor did it even get above 10km/h!

So the kids got hurt at 6m.p.h, yep I run faster than that! The bus companies still even now saying that the bus is compartmentalised and safe... well 2 of my children got hurt HITTING THE COMPARTMENT that is meant to be so safe... and they figure skate so they are not adverse to pain... and they said that it HURT!

So what the heck would happen to them at 100km/h? No one in Canada cares... the other parents (conversation stoppers, all say well in our day... blah blah... and I was like in your day there was like 5,000 people in the town, which has now grown to 30,000+ people... so quite a different place from when they grew up.... The Bus company doesn't care, and why should they when on one of the Government websites having 3 deaths/very serious injuries is a OK statistic for them.

Oh and the statistics that they keep on throwing at me are totally FLAWED! like totally... they are not current, they have no method that I know of reporting minor incidents on the bus, they don't collect data either so where are they getting these numbers from. This is the second minor incident in 8 months, the last one one kid got a cut head from being flung from his seat.... so 2 instances on my kids route and both times the kid/kids were propelled from their seats!

My favourite line of their argument is that in the event of a fire or a bus rollover... that the kids are hindered by the seat belt! Well if you are thrown around the bus in that event you're most likely to be DEAD or unconscious.... so what's better someone alive or a dead easy to move body? You also get quoted that they won't be able to undo the seatbelt by pressing the button... well that's hogwash! Even OATIE can undo his seatbelt and he's got CP in his hand! SO if a handicapped kid can undo a seatbelt, surely these other kids can undo their seatbelt in the event of an emergency...

I think yesterday was a warning, and that a second instance on our route of kids being propelled from their seat and the driver did nothing wrong, the driver should be able to make a judgement call whether to pull out or not without having to think about kids flying around the bus....

Why can't they compromise...the kids who's buses go on the highway get the seat belts and the ones who cruise around town and don't go above 30m.p.h/50km/h don't have one as the bus wouldn't really even get close to that.

so speaking of busses, Oatie was meant to go on his first ride on Wednesday coming... but he CAN'T as get this.... (he would need his Wheelchair with a seatbelt, to be in the bus and secured...)... well he doesn't have one yet... so they said that I could ride with him and when the drop the parents off, I would have to stay with him and I was like what's the point.... he want's to be treated like everyone else, he doesn't want to be sitting on my lap like a baby... so we've declined... for now... The bus company couldn't find 1 wheelchair for him to borrow for 20 minutes... so he can't go unaided.

Friday, May 25, 2012

Headphone ear muffs are here! and Hospital!

OMG I just don't know where the week has gone... well on Tuesday Oatie and I went to the childrens' hospital to order his walker for school and a wheelchair for the bus!  I don't really understand all this vendor stuff... so I let the physio at the hospital pick a vendor as I don't have a preference and as long as he gets his walker and a chair It doesn't matter to me from whom it came from.

Basically you appoint a vendor and they bring in the equipment and fit it for your kid and then you pay them and then they get paid etc...  Anyway our Vendor was really nice, really nice he taught adaptive skiing for over 10 years and was a lovely guy, so happy to help and just loved kids too.

SO Oatie chose a black wheelchair OVER the blue one... he said the black would go FASTER!  after 10 minutes he learned to steer it... their aim is that he could wheel himself to the bus (its at the end of our drive way)  and have some independence....  The Walker is like the one he has now but it has a seat... 4 swivel wheels and a ratchet so he can't roll backwards and is Yoda Green.

Well, it might take 3 months for the wheelchair!  So thankfully I was on the organised side and he should get it just before kindergarten starts!

We were in the hospital for 3-4 hours... but they were very nice and even though she doesn't endorse or support ABR she was open minded and really tried to think outside the box which was nice...  Oatie was on top form....

Last Saturday was my eldest's birthday, he turned 9!  9! I know... then on the Sunday he went to a friends birthday party at Laser Tag..

Oatie and his sibs have been practicing for Oatie's bike rally very hard... most evenings they are out with Oatie gettting him bike FIT!

Will post more tomorrow...

Tuesday, May 15, 2012

Hypercausis.... errrrr what? and Cerebral Palsy

Phobia's Vs stuff you didn't even know existed! Well until yesterday! I don't know about you but I really don't like labels, I live with them as I have tried to be creative in different words for handicapped or disabled... etc, but although you or your children may not live by the labels, (I Don't) you end up having to check the box when it comes out on Forms or when you're speaking to a "health professional".

So when there are multiple labels I guess for something, I tend to put that down to the "health professional" not having a clue and just labelling enough things like tags on a blog!

My own personal favourite was anything gut related was IBS. (Irritable bowel syndrome) lol!

Well my eldest had phobias of bouncy houses (bouncy castles) and trampolines and fair ground rides and people dressed up as characters... My daughter who picked and carried a black ball of wool to the checkout later that even screamed and had a panic attack at the very same ball of wool... and refused to go near it... All those things you encourage for example your kids to face. And yes you can break your leg on the bouncy castle, but it isn't likely... you'd teach them to jump near the back or middle and not the edge for eg.

Well, I felt like a huge FAILURE yesterday. Oatie has become what I thought was 'scared' of the banging of the pucks against a rink wall. We HAVE to go past this ice surface to get to our peaceful figure skating one... but we have to go past it. Oatie since he was 1 wanted to play hockey and had a collection of duff pucks some players kept giving him each week they saw him and he still has. We've heard the banging of the pucks before but I have to admit this is somewhat louder!

Since he is out in his walker, he feels more exposed, in his stroller he felt "SAFE" and that was another reason I wanted him to be in a walker as he was getting very very agoraphobic. and it was the toss up between the perfect line towards his ABR goals and him getting agoraphobia, so we decided that he wouldn't really "use" his body if he was agoraphobic nor have friends or who knows what the knock on effects would be to a 4 year old afraid of going out... so anyway he's very social in his walker a total transformation back to 'himself' again.

The problem being... that he for the past week has SCREAMED as we walked past the pucks banging,... not being able to see them coming like a taller person I thought he was developing a phobia... So I sat with him while he was so very upset hands over the ears immobilised by the banging. After 15 minutes I got him to walk on... each time I had calmed him another bang. In the end another mum asked them to stop smacking the wall for just a minute!

Well I and Oatie felt very drained after that, it was so upsetting that not matter what I did or said I couldn't give him comfort and I felt like I had let him down in a way. He was so upset that his eyes were all puppy like. Then my husband said, maybe he has hyper sensitive ears...! Oatie can hear through walls, (well i can too) so I never really thought much of it. The we looked at each place he would have a mild panic attack and it was all SOUND related! The Wind... the Train...

SO last night I googled it just to see if there was any correlation at all...and voila! OMG there is heaps and heaps, lots of diplegics with super hearing too/Hyperacusis. Well it can affect ANY CP kid, not all... Accounts from adults, teens all debilitated by sudden loud noises and often WALK AROUND WITH THEIR HANDS ON THEIR EARS! Well now he's in his walker he can't walk and have his hands on his ears.

The term is Hyperacusis, and it can affect anyone anyway, but particularly people with Autism, low birth weight, CP and other types of brain damage.

Well I never knew. and I woke up in the middle of the night and cried as there I was trying to get Oatie to calm with the sound (treating like it was phobia related) or Irrational 3/4 year old behaviour... and whilst it must have been like torture to him. I just felt SO bad, again as I had really really let him down. I NEVER knew that CP kids hearing could be affected too. Well I did find some non electrical ear defenders of such... online at 3am they look like headphones... and they can take out 105db. Hopefully they arrive soon, but on Wednesday I'll have my hands over his ears for him.... for sure!!!

Tuesday, May 8, 2012

Skylon at Niagara Falls and Glass Factory

Before the Skylon we went by the Glass Factory, it was amazing to see them make glass ornaments. I have seen this in Europe quite a bit but my kids have never seen it... I was pretty worried in the showroom as each piece was like $100 and up.... lots of pieces were $500.... Well they were beautiful and they have Cranberry Glass.

Well I was chuffed that I managed not to BREAK anything! Lol!

then we went off to the Skylon....

If you have a blue badge, you can park at the Skylon for FREE! not advertised... but there is very limited disabled parking in Niagara.. So you can park for free.

If you want to go to the Toilet in Skylon with a wheelchair... aim to go 30 mins before you want to go as you have to go to the front desk to get a person to use the elevator and take you down so you can go and then wait for the person to come back and pick you up!!!

The Skylon itself wasn't bad value...

But it wasn't very wheelchair friendly like to go on the observation deck outside you have to get down 3-4 steps, no disabled doors and is a 2-3 person job! and Oatie as you can see is SMALL!

It was nice and you got some nice vantage points....

you can save if you buy online, but you have to print out your tickets or you get stuck at the desk for 30 minutes.

When I was a kid there was a place where you could get a Barrel photo like you're going over the falls... the only place in Niagara where you could get that special effect photo was at Skylon and for $25 you could get 2 different portraits and I thought it was good value for what you got.

DO NOT go for the Legend of Niagara, part of the Skylon package.. esp if you are in a wheelchair....

We were told it was in the basement where the disabled toilets are... it was OUT SIDE THE BUILDING.... then you had to get down an escalator, 30 or so steps or use the elevator. The Elevator and the escalator were BOTH BROKEN!!!! BOTH! my husband and almost 9 year old had to take Oatie down in stages, it was a nightmare...

Then inside, it was a horrid Violent jerky cinema system, it's meant to be 4d... but Captain Eo at Disneyland California is smooth and quiet and Oatie loved it. This was like you were in a car crash!

Can you believe that there is NO WARNING TO TELL PREGNANT PEOPLE IT WASN'T SUITABLE EITHER!!! totally shocking! Do NOT GO!!! even if it's free, do NOT go to Ledgen of Niagara with a wheelchair! there is also no really wheelchair friendly seating either...

After that we went to...

Another nice Indian in Niagara Falls was the Guru, it was full of Indian people so that's always a good sign lol! (I'm Indian) and well it was very nice and there was another family with an Adult with quite severe CP. We didn't get stuck in the corner, they had this other family and us in the middle of the restaurant and they were very lovely to Oatie.

After spending $60 per attraction... we decided to find some FREE attractions...the glass factory was free... we decided to take the kids to the St.Catherine's museum... it's how the big boats get around Niagara falls... and is Canal Lock System... there are loads in England... but the first locks I've seen in Canada.

The museum was nice, it has relics from the past and things about the Canal, and it was free to enter and you could give a donation if you liked towards the upkeep... but the whole viewing of the locks was free too... so a great day out and it was FULLY wheelchair friendly...

There was the warm observation lounge and you could get out to the Catwalk walk way with the wheelchair from the elevator... so someone who can't walk can enjoy it just as much as those who do.

We spent 3 hours there had a picnic inside the observation lounge and the kids found it fascinating!

It was time to say bye to Niagara and head up to Toronto! More tomorrow

Sunday, May 6, 2012

Niagara Falls

So the next day we went to Niagara Falls, it was out of season, and rather BRISK i'd say, but there were no queues.... quite a long walk for someone in a walker, but Oatie REFUSED to go in his wheels! The staff were all pleasant and it was all wheelchair friendly aboard the Maid of the Mist.

The last time I went on it was when I was 12/13 I think? It was my 4th Visit to the Falls as we used to visit my mums elder sister in Toronto every year or so when I was little. SO it was nice to take my kidlets on and see their faces and wonder if mine was like theirs in total AWE of something so natural and raw power and beauty.
Oatie on the Maid of the Mist... other people wanted to borrow it as we were all not very steady on our feet! He stood up for the entire thing.

The only thing is that if you're in a wheelchair it would be very hard to get up to the top deck to see anything... so you'd have to be lifted up the stairs... Luckily Oatie is not that big.... yet!

Another boat company is taking on the falls boat ride next year, i wonder if it will be more wheelchair accessible?
We have a photo of him smiling but I think it's on my husbands phone... I couldn't see when I took this photo from all the mist!
After the Boat Ride...

We then went to Boston Pizza... DO NOT GO! unless you want to spend 2 hours in there and be charged $3.15 for one soda! The service was rubbish... the only good thing was that the kids meals were good value... but $20 for a spag bol....??? hmmm! Both the Chinese and the Indian in the heart of Niagara were better value and more filling than the Boston Pizza and the service at the other two was brilliant! After Boston Pizza we headed for the Skylon...

Tomorrow I will tell you about the Skylon!!!

Friday, May 4, 2012

Montreal... watch out Oatie's about!

I have just lost my post for this, and I really quite liked it:(

I don't know if take 2 will be as good! lol!

We had a great trip to Montreal and the next day we went for our ABR training. We had a fantastic training as usual with Fehim and Marianna. They both are totally outstanding, they are so clear and explain things so nicely... I don't know if it's the same for the other ABR families but the 3 hours just fly by! There is a group synergy in the room, each person with their unique CP but we're all working towards the same goals and a lovely camaraderie!

Oatie on his Bench watching his cartoons.

It was the first time Oatie doubled up on his sessions, I will update the comparison photos but that will be a blog post for another day! As it is I think I'll have to break our trip into different posts so many photos

Oatie in McDonalds, we gave in to the kids lol! Oatie says that's where Frutopia comes from!

At our Favourite Indian in Montreal, well in Canada ! Moghel Tandoori the details in the restaurant section of my blog! As usual fantastic experience, wheelchair diners so welcome and brilliant service the owners nephew is special needs so he just loves Oatie when we come in. He was super chuffed we came back!

We also met up with Oatie's LOVELY preschool aide who was wonderful as always!

Fuel for what was our 9.5 hour journey from Montreal to Niagara Falls... I think it's meant to take 6... but we had a few pit stops along the way and Tim Hortons was one of them! Oatie usually gets 1-2 timbits... so he's never seen a donut before! He thought they were one HUGE timbit and was so excited!

We made it to Niagara, this is at a Chinese in Niagara Falls, it's called the Lotus Garden I think super handicapped friendly, great value and sweet service!

Tomorrow I'll post about Niagara Falls!
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