Christmas Holidays Oatie Style

Having a great Christmas Holidays, Santa brought Oatie a Nano Raceway track, so now his nano's can run around and race and sleep in a safe environment. Oatie is so happy that his nano hexbug family can do that!

Xmas Eve Skate

We had a wonderful time on Xmas Eve, we went for a family skate. Including our new family member, so all 6 of us were out on the ice!

We had a brilliant time, it was so lovely all 6 of us (well the baby couldn't hold hands) the 5 of us holding hand together :)

Special people in your life :)

WOW, some people are just amazing! and totally restore your faith in the human race! My Oatie was going to a Christmas Crafts day, the first year that he could go 2 years ago he had the worst croup and only my (now) elder daughter could go, and last year my Oatie went (but with his dad because he was potty trained).

But THIS year, Oatie's last eligible year! And Oatie is potty trained!!! Oatie was all lined up to go. He could go without an adult this year... but then I had thoughts of Oatie being bullied, ending up soiling his pants... or whatever... The said family member was meant to go, but well they were not what we expected at all.... so at 23:30 the night before the Christmas workshop, I sent an sos text to one of my best friends and guess what.... whilst she was a hockey game, she arranged that one of her sons would take Oatie.

I might add that her younger son who took Oatie is 18 years old, just turned, and was on college holidays.... and works as a supervisor at a fast food restaurant so was up late as well the night before till like 1am working. Got out of bed shortly after 9am and spend 3 hours with Oatie. They had a total blast! Yes my friends son is 18, prepared to take Oatie to the washroom etc etc.... and hung out on his holiday with a 5 year old (a pretty cool 5 year old) and didn't want paying..

Like who does that, was just so sweet, he (college student) didn't want paying for it either! My friend has 2 wonderful young men for sons... just wonderful. I am so blessed having them in my life... :)

Wonderful Christmas play

Today Oatie did his Christmas Performance and I have to say he was fabulous! Totally fabulous, well his elder siblings were too, but Oatie really did himself proud.

Last May before he got his Walker, he was beginning to get agoraphobic... and because he just can't thrust himself out there... you would wonder how he would be on a stage?

My elder two both figure-skate and are used to competing having the whole ice to themselves and with strangers watching etc etc.... so I wouldn't expect them to be shy... lol!

But Oatie was lifted onto the stage and he stood for a full 5 minutes singing in with the rest of his class and he was so awesome that he had people coming up to him after and commending his performance!

It was a fabulous evening and yes it was in French, I am yet to ask Oatie what he was singing lol! but it did sound really great!

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:)

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....

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!

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...

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!

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 :)

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....

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!

Another Brilliant week at school:)

Oatie LOVES his temporary aide, I just wish he would be his permanent aide... as do the other parents and well everyone really.  He's young, funky and absolutely LOVES Oatie...  Treats him with respect and Oatie is flourishing!

This week, he's still kept his pants clean and dry, sorry if TMI but it's now a MONTH if not longer!!!  He's been out with one of my best friends on a lunch date, she picked him up from school and took him out for spaghetti.... and he's been on the swings in the playground... and he sings the welcome song, he's talking more and more in french.... and he's unbelievable... and just when you think he can't blow you away like that again, he does something else which blows you away again!

They had a sibling photo at school that they all enjoyed... it was a bit tricky as no one could wear any green as it was a green screen shoot...  Tough when the boys love starwars and angry birds.... but we found something that then complimented their sister...

No news on the new arrival...

unfinished posts lol! and Oatie's huge progress

Phil is this a good team???

I tend to use my ipad these days with keyboard and rarely go to my desktop apart from syncing with itunes.

I found some unpublished/unfinished posts on my blogger on my desktop that I haven't seen for a really long time.  Anyway they're out of date now lol!

Need to ask my dear friend Phil, if this is a good team, I found this cap and have no idea! lol!

Oatie has made huge gains in self development.  He has been clean and dry day and night for over 3 weeks now!  He got his Mario Kart DS game, he was so over the moon!

WOW!!!!

So Happy he got his Mario Kart DS!

He did the Terry fox run/walk in his wheelchair (super bumpy terrain) and next year I think I'll let him take his bike, I can't lift it at the moment as it's super heavy but next year should work quite well.

New Wheels!

In the middle of October, he is riding his bike on a sponsored walk, one of my daughters has a life threatening blood disorder and the kids/we are walking to support her friend and his family.  So he will be riding his bike for the 1km distance, he is very happy to be able to join in and not be pushed...

His Sentences have come on a long way and there have been no complaints about him or his behaviour at school at all...he started to try on his antics again... and we told them to not have it and be strict with him and he stopped...  (he has a temp aide as his real aid is away on compassionate leave). so Oatie tries as any kid will do see how far they can push it/get away with stuff...

The only aspect I don't feel happy about is not being able to do Oatie's Manual ABR, he's grown rapidly recently and I can start to see bad changes in his physique... I know returning to his manual ABR will sort this all out... but I feel bad and he's complaining he's in pain and I feel bad about it...

Well if there is a positive, ABR SO DOES WORK!  he's not getting worse from not rolling him, it's because he's grown and that's when the "bad" changes happen.. All i can say is thank you ABR for your night machine as Oatie gets 10-12 hours of that a night, we restart it before we go to bed...

Oatie with his "big boy lego" we said he could have a set when he used the potty, he built the ship it took us 5 hours to do over 2 days but he did build it himself I helped him orientate the pieces and i told him what came next but he found the pieces and put them on where I showed him where they go:) I was so proud of him!

Oatie and his big boy lego!

Water Spray Park.....

First time at the spray park, we didn't go before as Oatie could't get around it, he couldn't crawl on the concrete... so none of us went.

But this year, he had his walker and so here's Oatie....

Decided to enjoy one of the last +30oC days before we enter the -30oC days lol!

Someone whom I would like to meet... fab article, I wonder if she would endorse ABR?

Oatie has been asking about Karate. His dad, big brother and Sister all do Karate and well naturally Oatie wants to go too. Each time we drive past the school, he says that's where Karate is... and now he's doing super with his potty training, he says, now I can do the potty, I can do this _____________ (whatever activity he's thinking of at the time).

So just 2 days ago he mentioned Karate.... and yes my husband immediately said... "I wonder what Sensei would say?", (it's a family that run our local centre, husband and wife and 2 sons who are all black belts.)

Well me being me, I said I'm sure he'd say YES, he would HAVE to... (I don't think Oatie is ready to do that now, but maybe in a few years...., I wouldn't write it off at all).

And then we had the cliché bit, where hubby said, "but it's all about balance and co-ordination and the very things that people with CP are challenged with", but I then said that's why it would be so good for him!

I know from my own personal experience of ice skating, that the more you skate the better your balance is... and same for riding a bike, if you haven't ridden for 10 years and get on you're a bit wobbly... but after a few mins you're a lot better and more frequent the better your balance is....

Well I know that they an immediate family member with CP, from what I have gauged from a conversation in the past.

So I said yesterday that I would be Oatie's aide for Karate, not tomorrow lol! but when we feel he's "ready"... So while I was looking up the "viability" of kids doing martial arts with CP... I found this article, might be a bit old... but I would sure love to meet this woman.

Cerebral Palsy and Martial Arts, NY Times

My Favourite quote from the article above is:
''No one expects someone with cerebral palsy to be good at martial arts, which require focus and motor control,'' Dr. Brunstrom said. ''Yet some of these children learn to take down a 6-foot-2 black belt. It really opens people's eyes to what someone with cerebral palsy can do, and it gives the kids a real sense of accomplishment.''

Still going strong now in Elmo's

Wow! Well Oatie is still going strong! He cried when the pull up's ripped, which they do by midday so today I decided to get out the Sesame street Elmo (REAL) underpants that he chose about 1 year ago!

So today he is wearing REAL Underpants, Elmo ones, he loves them and says how comfy they are and what he likes the most is how that they don't RIP! and how that they are comfortable.

His racetrack shaped chart that I drew and stuck to our magnetic board is going down a treat, his magnet is his car and each day he get closer and closer to his MarioKart game :) he is so happy, I'm so happy! Oatie is even dry at night!

So we agreed Diaper/Nappy at bed, Pull up's for school and Cotton REAL pants for home. He seems happy with that and when I'm confident that they will let Oatie get to the potty when he needs to go at School, then he can wear real pants at school too, but I'd rather he has a pull up on just in case so he doesn't suffer humiliation in front of his friends.

What's nice is that he's actually enjoying being clean and dry, and just so proud too:)

If you asked me a year ago if I thought he would be potty trained this time next year, I would have thought no...

So over 8 - 9 days of not one single accident, that I am hoping that Monday at school goes ok, it would be so sad as I think if he wets himself I think he will be devastated and very upset and yes.. on Monday he has a New Aide too! The other aide loved him which was really nice and she'll be back in 2 months. His new aide is a lady who already works at the school as a floating helper and for the time being while the other lady is having leave, she will look after Oatie. This lady like Oatie's current aide has know our daughter since she was 3 and she is really very nice too.

Such a difference being out of the preschool that was "hiring" one of their rooms to being an actual part of the school.

My eldest is coping really well with yet another change of school and really enjoying it and his new classmates some of whom he has skated with a few years back or danced with are in the same class and as it's a split class, my daughters friends from Preschool when she was in the preschool are in my eldest's class (my daughter was after the Feb cut off so ended up in the grade down), so far so good. My daughter is so glad to be back, I never thought I'd ever hear her say that but she loves the small school feel and seeing both her brothers all day around school in the hall, eating lunch with her big brother and getting to kiss her little brother in the playground on the cheek has made her so happy. Long may it continue :)

He's Still going:)

Still not wanting to jinx this... but Oatie is still on a ROLL!  Whoo hoo!

I don't want to jinx this but I thought this day would NEVER come! sorry if TMI!

Well since Oatie left the French school last year, after his "aide" shouted at him for not producing a "result" on the toilet.... (and my daughter in the next stall/cubicle overheard)....

We've had a long and very up hill road with Oatie to use the potty.

Easter came and I did stock up on those foil wrapped chocolate eggs as enticement in the end for him to just sit there for 30 seconds...

Gradually and gradually... he started to use the potty but needed constant reminder.

Then about a month ago, some days he would be dry and other he wouldn't bother... and didn't have any success with the non-peeing side....

So I set up some more tangible bribes, I've never bribed mine to do anything, actually I did bribe them to learn to swim. So this is my second bribing lol!

Well last weekend it was a huge breakthrough!

So after x days he got something he really wanted which was a DS game, and today he earned it... it wasn't available anymore so I had to go to the secondhand games shop and pay brandnew prices for it ROL (Roar of laughter!)! but he is so happy! so during the day he's in pull ups...


So for 48 hours, Oatie has been clean and dry, he wasn't at school today as last week on his first day they "accidentally" gave him a Greek yogurt, which they didn't realise was Cows milk... a parent brought it in and they never checked with me... so the poor love won't be going to school tomorrow, but with that, he will have another day hopefully of being clean and dry and I'm hoping he likes it and doesn't look back. I remind him every now and then but he suddenly gets up and says I need the potty! ! !

I've have never been so excited about a potty in my life before! He won't go at school so I am not sure how that will work out yet... especially that's where he got his phobia from.

I have to say it was ABR when I rolled his Pelvic floor for 6 months solid that gave him the function. it wasn't there before at all.... and after rolling him for 6 months he did have bladder control but didn't want to use it like he does now!

ABR is amazing and I'm feeling bad as my hours at the moment have dropped off... he still getting his bench at night but I am keen to get rolling again with him hopefully in a few weeks time.

Our local leisure centre

Annual Shutdown... 2 weeks, will they actually do what they say they will.... repair and fix the facility?

This has been like this for well over 6 weeks, this is the disabled toilet in the ladies...

Yep, that one of the shower curtains... nice eh?

We've been here 4 years and the place just gets worse and worse each year....

Like when was the last time this was wiped down?

At the Children's Hospital

We have a really nice vendor, he's the main one that the hospital use and I can see why...

He was a volunteer ski aide for disabled people for well over 20 years... he's coached down hill sit skiing and just a really nice guy.

The physical Therapist there is so nice, she doesn't know anything about ABR but, she does recognise that Oatie is doing great with it... never pushes braces or AFO's but if I ask a question she's happy to help or find stuff that might help within the scopes of supporting ABR...

photo of the cafe ceiling at the children's hospital. This facility is so nice, the staff are nice, it's clean, it has a disabled outside play area with adaptive swings and just a cool facility.

Today is the day that we pick up Oatie's Wheelchair for the bus...

so excited about picking up his wheelchair he's waited 3 months for it to be made... it's a standard self propelling wheelchair, but it still took 3 months..... got it just in time for school....

Wreckless....

We got season passes for the local family Theme park. Every single ride has, not advised if you're pregnant etc... as they do at Theme parks.

Well today, my husband, has been rotating, between taking Oatie on his own, then Oatie with his Siblings... and then the older two on their own. So today he took my elder two for an afternoon out... etc...

My husband just messaged me a photo of my kids in the line for the log flume... it's not one for the faint hearted... you have to hang on and there are not foot holds or anything to brace your feet on... Anyway I happened to notice this, in the corner of the photo....

Look how pregnant this lady is....

So, I'm txting him back, like there is no way that she'd go on that ride, it's not like the perimeter train or it's a small world at Disney....

but she did go on the ride...

things like this make me annoyed. There is a mother, who is carrying an unborn child, pretty heavily pregnant and taking an unnecessary risk! And as sods law has it, they'll have the non handicapped child even after going on a ride that is like being in a minor car collision... and there are people like us who wouldn't even consider doing that to an unborn child... who have the kid with the brain damage. See if you're in a car collision, then that is part of "being alive" / bad luck taking a risk by going in a car but you don't get hit every day... going in a car is a calculated risk.... going in a log flume is pure selfishness on that pregnant mother's part...

I'm not wishing any bad to this woman at all.. or dissing our Oatie. Oatie has brought so much pleasure in to our lives, as you all know he spends most of his day smiling and is such a character with an awesome sense of humour and puts most able bodied people to shame with his determination etc, although I do admit his physical limitations have altered the course of our family's path totally. My parents camped since I was 2, and have been in the Guiding and Scouting movement my entire life, and by the age of 16, I spend more than one year of my life under canvas camping with the Guides) a lot of my friends go camping and hiking most weekends with their kids, etc) and we're yet to be able to do that, I'm working, looking into solutions to make this possible for our family, not for each weekend, but so Oatie can also experience the pleasure of the outdoors too. I also hate it when "so-called friends" say, especially in the Summer, what you haven't been to this blah blah falls, or you haven't gone on this trek... I'm like no we haven't, Oatie can't WALK, or climb up rock or steps....

Altering your family's path, isn't necessarily bad, my husband and i have found that our talents/past sporting interests or physique (met in a gym), has all be so useful in our new path, like me being a lifeguard & Swim Instructor as a teen when I had a huge water phobia from almost drowning 4 times as a kid until I was 10... so now both skills really help Oatie with his swimming development. My husbands pretty serious back injury from Rugby through his 7 year recovery, taught him balance and control and even though I'm a better single skier than him (he may not agree) but he's a way better aide for Oatie on the Bi-ski, his turns and stance are perfect for the Bi-ski. I wanted to learn to ice skate since I was 5 and when we moved I did, I even tripped over my picks which had my knees bruised for 18 months... but I persisted and luckily I'm a good enough aide to skate with my Oatie. I LOVE skating with him, absolutely LOVE it!

So my next challenge is to get us outdoors more as a family... I think I might have found a solution, It's an "off road wheelchair" like the 3 wheel strollers but more robust...but it won't be until next Summer it comes into effect and we'll start small by camping in our yard... and having so many wonderful Scouting friends, I can ask them who have been on the trails etc (not the so-called friends), which ones terrain is suitable to start to experiment with being out doors more. With the help of ABR, I feel this is possible, where as before ABR any bumpy terrain even in a car park would have Oatie screaming in pain.

Nor am I saying that we should wrap everyone in cotton wool either, you know that my elder two figure skate and we're an avid skiing family.... all have risks... but in my opinion, going on a log flume is just plain STuPID when you're that pregnant.

I just think that this heavily pregnant lady is insane... this is one that could be avoided, it's not Disneyland with millions of strangers... it's a family park.. and you usually bump into at least 5 families that you know there... and like today my eldest had to ride the roller coaster sat next to a stranger as my husband was sat with my daughter, it's like when you go skiing and other people share the chair lifts with strangers or help take a ski-school kid on the chair with them. Ok, I won't see the outcome, but where we lived in England we used to go to an animal farm and had season passes for that, and I saw really pregnant women jumping into a shallow BALL PIT, others riding down the astroglide slide with a toddler on their lap and one Running for ice cream and falling flat on her tummy just because she was wearing flipflops.... and all 3 had non-brain damaged children. It's not like they were being sensible and then had an accidental fall, all are just plain stupidity... and just slaps you in the face how unfair life can be.

Rant over and out and yes, I'm hormonal as I'm pregnant... 33 weeks on Tuesday:), (I haven't been that public with it as I am excited but have all the past emotion of Oatie's birth with it), we went to the theme park with one of my friends who's daughter is my eldest age and she rode the ride in my place a month ago and said she had not had that much fun in ages having a tiny hand in hers on rides... And Last weekend I did go with my family, but I didn't ride any of the rides, I enjoyed watching my family riding the rides, and I enjoyed the precious gift of my unborn snuggled up safely, who kicked each time he/she heard his/her siblings approaching after coming off a ride.

My Extra Pair of Hands - I found them

Yes, Oatie is wearing Glasses again!  Well, we found out what was wrong with the other pair... they had the - instead of a + or the other way round.  I don't wear glasses myself so it's all greek to me... the poor guy couldn't see properly for 4 months and then we just took them off him and as it was a Machine which gave his prescription a "human" put it into the computer wrong and so hence his lenses were made totally wrong.

I don't know yet to whom I am to complain as they are Dr's in Canada, that practice should really get a big black X by it's name, that they couldn't even check what they ordered!

My Extra pair of Hands is the IRobot Zumba which my kids have called it "Munch",  I have to say I love it for several reasons!  First, they have to pick up all their tiny bits of lego or Munch will eat it, their rooms have to be tidy or Munch will attack what's on the floor and thirdly they are really enjoying having carpets vacuumed much more often!  (as do I)

I have found it bliss, I can sit happily playing with the kids, while Munch gets to work!  It has a spot clean function so you can put him under the table and he'll just get all the crumbs!

I've only used him for 3 days but I LOVE Munch!

Few more days of holidays and another huge school dilemma.  Where my older two went last year, they increased their bus journey to 1hour to go 10km! which I think is rather naff... they might tolerate it but Oatie won't.  We've heard nigh or high whether he has an aide, they sent us the wrong paperwork for which class Oatie was going to be in, and all the school supply list is useless to Oatie, as he wouldn't be able to use most of it.  instead of the chunky felt tips, he needs the small pip squeak style crayola ones instead.  No one from the school has contacted us or done anything really.

The school has expanded beyond belief that they are now at almost double capacity from what the school was originally designed for and have added portables and more portables.  The French Immersion was not what I thought it would be at all, it was dull boring and none of the other kids could muster more than a basic sentence after an entire year/or for some people 2 years of French immersion.  My eldest who is also very bright got super high prediction in his PAT's but I think he would have got that wherever he went really.  Things like the Disabled parking bay, there is 1 for a school of 700 pupils, which is in the BUS LOOP so it's prohibited to use during school drop off and pick up.  So I had the choice of sticking him on the bus for 1 hour, or parking 15 minutes away and pushing his wheelchair in -35oC on unshoveld paths or taking him and his siblings in 45 minutes late every day for school.  None of that bodes well for me really.  I emailed the school transportation officer and I got a reply that she would look into what she could do at the end of September!  I'm like that's RUBBISH!  what about the disabled bay that is in the bus loop?  I would have thought that prohibiting me from using the disabled blue badge bay would also be illegal?

So I'm wondering about French school, it  is pulling me back in that direction.  Oatie wouldn't be in the preschool he'd be in Kindergarten and have the same teacher that his big sister had... and she is LOVELY, the classes are smaller, it's a small building his big brother and sister would be 20-40 feet away at all times so they would see each other all day.  Oatie's dad works 5 minutes from there and so in Winter he's suggested that he goes and shovels the disabled ramp before he goes to work.  We know what their "let downs" are and as he's out of the clutches of the pre-school, the rest of the school which is run independently from the preschool the teachers seem to be nice.  We've known them for 4 years since we moved as My daughter went there for pre-school too but it was run differently back then.

My daughter who is like a Hermione Granger, started to play up (she was so bored last year) and I really think it's down to intellectual boredom.  My husband went to schools where you had the brain power to do the work they'd give you more and more....  I went to a school where I finished the work in 5 minutes flat and was just left to sit at my desk until everyone else finished.  My eldest copes with it by sketching in a sketch book or daydreaming... and my daughter is now very frustrated.  (they are both beyond their grade at reading) and my daughter is fluent reading in French.  So the appeal of them going totally into French French and doing all their schooling in French is sounding more and more appealing. They also learn Spanish too.  I have a core group of parents who (all stood up for Oatie) who would help.

So I've set a meeting up next Thursday to meet with the principle and the head of special needs from their school board.  I'm hoping it's not all a huge hormonal reaction on my part....lol!  We shall see....

Photos and Binoo

Another actioned packed week, Oatie and his Sibs had a photo shoot just the 3 of them on Friday, which was a nice end to the week followed by a "treat" of junk food lol!

Oatie watching one of his sib's pulling funny faces for the camera :)

Binoo, caught, we have an automatic tap in our main floor washroom and the other day someone left the door open, we were watching a movie and heard the tap go... so I was thinking if we're all here, who's using the tap?

Well before I lysoled the sink,... here he is, the Binoo washing his paws before he eats....

Binoo

Binoo, has been a wonderful addition to our family. He has managed to make all the cats LOVE him... and the person who loves him the most is... Oatie...

He's so thrilled to get his very own pet... we thought that way he could learn responsibility before his service dog arrived.

Oatie's new walkers arrived one for school and one for home... and his Wheelchair is arriving at the end of the month too.  The Wheelchair is for the bus and I wanted someway for him to get out of a building if it was on fire... at least this way he can be put in his chair and wheeled out.

Also he can propel himself... so maybe we might use it shopping and then he can have the independence that he craves... but without the walker.

I try to limit his use of the walker as I feel it does go against the ABR that I do on him... so it's a delicate balance of letting him walk over feeling like you've undone this mornings session if you know what I mean.  So I keep it in the car and then we gauge how much walking there is to do..  if I leave it in the car then he knows that I haven't taken it away from him and then he feels it's his choice not to use it.

i love Ikea!

Today we went to Ikea to celebrate my eldest and my daughter passing their ice dance tests.

We were going to Ikea anyway... as Oatie has been looking forward to the Swedish Meatballs and fries for a while. It's also a nice place to go if you're feeling homesick as the same Ikea in the UK tastes exactly the same in Canada lol! The UK Ikea that we went to was 5 mins from our home and with their free baby meals and kid friendly environment, we found it a nice place to go where you got real plates but food on a budget. Also the refill of coffee or tea was also very nice :)

Wow, where has the time gone...

Super Oatie-Lightyear

Oatie loves this costume and has wanted to wear it for years... my eldest wore it when he was 3.

happy birthday Oatie

Today Oatie turned 5! We had a hospital appointment, then It took the kids to Starbucks for a treat and then we went on to my elder two's skate camp. Which is bliss for Oatie and I, We get to sit and relax together in a gorgeous air-conditioned building... to get away from the 30oC temperatures... and my elder two get to let off some steam for an hour. The camp is only 1-2 hours long, not all day like our previous skate club... so that's a nice amount of time...

I made the cake and, I thought that the "bomb" was his favourite, so I made chocolate cake... and then a day before he was telling me how he loves the Red bird.

The Day before we went to the British Fish and Chips for a special treat, Oatie had been looking forward to going there for a few months for his special birthday meal.

We watched his favourite movie and his kitten gave him Angry Birds T'shirts to him and his siblings so they were all matching, It's the first time mine have ever worn matching outfits lol!

It was a great day and he loved his presents... especially his "Binoo" his new kitten...

Binoo is so lovely and loves hugs

Binoo is a human-dog-cat... He loves human food so you can't leave a scrap out...he pounces, and sniffs like a dog lol!

Binoo and Oatie love watching curious george together

Oh Mannnn! not again!

I haven't had a puncture in like 16 years... but I got 2 in 2 weeks! Really got on my wick !

AT least Oatie loves the tire/tyre shop.

We've had a hot Summer so far which is nice... especially after our brisk winters....

The puck imbecile...

Today we met another "Daft Puck" imbecile... No it's not a typo... lol! We were walking past the glass and there was this man on the ice and he was deliberately hitting the pucks as hard as he could on the glass right when we were walking past and the most Oatie got upset the more he did it.

Well, I like to believe in Karma... what goes around comes around... and in this situation... It made me jump out of my skin.

Anyway when we were leaving the complex I asked the operation director why do they have to hit it on the glass where people walk by why not the other side by the WALL... and he was a twat too, saying he can do whatever he likes as long as he's on the ice. My favourite part is this guys office is right by the "daft puck" ice surface and while I was complaining... the Daft Puck, man hit a cracker that made him the idiot I was speaking to in the office jump out of his skin.

Karma, Karma...

Apart from another puncture yesterday... things are going pretty good...

We're almost at our target of saving for his bi-ski.... so just need to put our grant applications in the post in September :)

just having a huge SCREAM!!! arrrghghgghghghghghhggh if only I could scream!

Well majorly annoyed! In Canada, the government give the money to help special needs families to a "seniors" section AGENCY!, for for a start the website is geared to seniors only!!! so that throws you off the scent.

When you do finally get to the organisation and get a home care worker out... which is 2.5 years AFTER the official diagnosis... you still get nothing no help nothing!

Why! Well because of Oatie is out of the medical system so to speak, that I won't let them cut him up and do physiotherapy on him (because for him it won't do any good)... although I could do with some ROL (Roar of laughter!) we don't get any help for respite at all!

I have said it before, our "home" suffers, as I don't have time to run around with a vacuum cleaner. I really would love someone to sit and read with Oatie or reinforce his numbers as we all think as does his wonderful preschool aide who we're still friends with think he's is capable of university one day, it just getting him there or giving him the opportunity to get there if the wants to...

Our bottom line goal is to get him as independent as possible, so he can have the best quality of life that he can have and I think he could have an amazing life... i truly do... it's about not cutting off opportunity for him. He has declared he wants to do a tandem parachute jump one day... and also wants to learn to surf.

Well for the incontinence supplies... we were seen by the case worker in end of Jan and by April I found out it was authorised but no one bothered to even tell us! that's how rubbish it is... and you don't even get 100% you still have to pay a huge chunk, it's like a discount which is almost negligible as you can't use Walmart or Superstore.. you have to go to SAFEWAY which is more expensive to start with... so I don't even know if it's going to be viable...

Does it support SWIMMING! NOPE! well that's considered a luxury!

I think that for any disabled person out there should get hydrotherapy or access to a pool for FREE and the paraphernalia to go with it... swim nappies/diapers, buoyancy aides, and hopefully volunteers who are prepared to go in the water with them if the parent isn't able to.

How on earth do people who can't walk, get regular CV exercise! I bet it's next to none! It's not fair and it just isn't right and I really can't stand the system it STINKS!

Oatie is lucky that we do have a membership to our local leisure centre and I was a certified ASA Swimming instructor. What about the other Oaties who don't have that access or ability?

I might think about making a swim diaper for him as he's never has soiled himself not even in the bath... not ever.. and do that so I can them re-make one as he grows...

The whole thing if you excuse the pun, STINKS! it so does!

Oh and out of all the toilet seats that this government agency will sanction for him which is worth $50... there is the choice of just 1, which probably won't be suitable and will need my husband to modify it for Oatie!

Don't forget the means tested disable access ramp too. Yep if you earn more than less than minimum wage, you get means tested for a flipping ramp! and no I'm not joking!!!

Stinks, stinks stinks!

Oatie's 3 Sports days

Well the school year is officially DONE! Last year my eldest went to a school that finished a week earlier and I think our school was finished last. Yesterday I had a cup of tea with a friend and she was already starting the "wind-down" and I was thinking, 24 hour more to go...

Since my eldest finished his PAT's they've been pretty much in Summer holiday mood... so I thought I'd add to it with some Cupcakes with faces, they were kids faces, thought I'd throw some Sugar into the mix on the last day!

After school we got some Summer clothing as they are already stocking the shops with SNOW GEAR!!! yes SNOW GEAR! I thought my friend was joking that on July1st that's when you buy your WINTER GEAR! I had to believe it to see it!

We had a lunch out which was a nice treat and then we went home.

Oatie had his 3rd "sports day" he was very disappointed that he didn't have a sports day so the rec centre creche organised the gym last week so Oatie and the creche friends could have a sports day too, it was pretty cool, they put up slides, nets tunnels, balls etc... they had so much fun they did it again on Friday and today Oatie was really sad as today was the last day of Creché until September, so they went to the gym but he was just so sad. The other day he almost made me cry as we drove past where his preschool was that he went last academic year, (that he couldn't go this year as they had a neurotic aide for him who despised him) said that's MY SCHOOL, I MISS MY SCHOOL.

Well he's going to his brother and sisters school in September, so I know he's looking forward to that.

Oatie has been approved of a Service Dog !

Hooray! Yesterday we got a letter saying that Oatie has been approved for a service dog, which is excellent news as it will mean when he gets the dog, he won't use his walker very much at all as he'll used the dog to get around instead!!! With us or a dog Oatie doesn't toe walk and walks properly as he walks slower... in the walker he speeds around and toe walks which isn't very good for him... not to mention having a BFF, and someone who can help him take his mittens of, open doors pick items up for him, be with him when he swims and ice skates and goes to school...

Scene On A Dog Meeting Sept. 2009 In Kiel, Germany Royalty Free Stock Photo, Pictures, Images And Stock Photography. Image 8117674.

Binoo and Oatie are so happy together...

Binoo and Oatie have settled in very well together, Oatie is Binoo's safety blanket... as Oatie spends most of his time on the floor, if one of our elder cats makes Binoo feel intimidated, Binoo jumps straight on Oatie's lap. Oatie is feeding Binoo and spends most of his day babysitting Binoo so they are getting a really good bond.

Our other cats have pretty much left Binoo alone and if Binoo gets too close the other's either hiss and run or just run...

Binoo cries if he is apart from Oatie, so when Oatie calls him, he beeps and comes running to Oatie, it's so cute.

Binoo the CAT!

Well, We have had another busy week, my older two passed the same ice dance, but tested individually with their coach. They both shocked and had me in awe at the same time as they only worked on it for a few weeks. It might mean that they will compete as a pair on the fall in ice dance..... (as well as an individual).

We went for a lovely dinner around a friends house and when I got back I decided to look on the classifieds for a kitten.... and low and behold there was one just down the road from us, a boy kitten and the type of breed that we were looking for... so on the buy and sell site, i msg-ed them at 1am ROL (Roar of laughter!)...

The next morning it was Father's day and the kids really wanted to go and sing in the school choir at church... so we did that, then took Oatie's dad to Starbucks for a super coffee and we got the call from the "cat lady", so we went and had a look,,,, Oatie and the kitten bonded instantly and well, put it this way... we came home with "Binoo".

Oatie has been sharing my cat, but he really wished for a pet of his own... we're still waiting for news on the Service dog, but already him having his own pet has made such a difference as Oatie picked him out and each time the kitten is away from Oatie, he cries....

What kind of influenced our decision was that the "cat man" had a terrible accident, and broke 39 bones in his body, his back in 3 places, his pelvis and legs the lot with a car falling down on him... They were told he'd be lucky if he wasn't paralysed... and then when they told him to stand they didn't know if the pins in his pelvis would take him standing or whether it would split apart and he'd never walk again... well luckily he will make a great recovery whatever that will be as he isn't paralysed (but they can't operate on his back where the injury is) and he can stand... and is now learning to walk. He's been out of work for 4months and will be lucky if he could return to work at Christmas, he just got out of hospital a few weeks ago.

So after that, we decided that it was fate that I happened to look at the classifieds for a kitten for Oatie just then and buying the kitten will help "Binoo's" cat family out... too.

So there we have it, Oatie got an 'early' birthday present as when we saw the kitten we were expecting that we couldn't take him home for another month... but the "cat lady" said we could take him the same day....

Oatie's Cerebral Palsy Bike Rally

Last Sunday in the most horrid winds, Oatie, who really dislikes WIND rode his 1km bike ride and did it with style. His Brother, Sister and I made some sparkly things to bling up his bike... and we wore his hot pink skating top, but underneath some layers.. it was so windy that my eldest put on his snowpants and ski jacket!!!

It was meant to be a pretty level course but with the wind against us, it was that type of wind where you can't breathe!! takes your breath away!... the CP kids struggled battling the slight incline...

The adults and kids were AMAZING, if you ever feel that YOU can't do something, do and see something like this where non of them were distance walkers... they all needed "wheels" of some sorts, so to see people who can't walk on land but pedal was just totally brilliant.

Oatie all along the route in the wind said, "money for more bikes for friends" it was his mantra to get through something he hated with something he LOVED (the bike).

Oatie was awarded the highest fundraiser and he raised over $1315! my original target was $100.... I have left his page open for a week or two more as he's still getting sponsors in...

He had a brilliant time and his brother and sister rather than riding off ahead with the other able-bodied siblings wanted be with their brother, and cheer him on.

after the half way point we were out of the wind and Oatie left me for dust... his brother and sister ran along side him and he finished the 1km on his wheels before I got there on foot!

To finish the ride, they all got potato chips and then after we had hotdogs and pop.

It was a brilliant morning and Oatie is looking forward to doing it again next year...

My first fieldtrip !!!

Today I went on my first fieldtrip ever. Mum wanted me to experience it, just like my able bodied friends, so I went with my aide (no mum or dad). I found out afterwards that mum was only 200m away. First we went to the supermarket and then the police station. I had the best day and no separation anxiety. My aide said I was great, I've never done that before have time away from mum apart from school. I had the best day and said "mama I love fieldtrips, maman j'adore fieldtrip" he told his dad about it and his sister too.

Art... Felt Tip Pens.. Cerebral Palsy... and Bikes

Oatie's Bike Rally that he's participating in is this Sunday. Our Original target was $100, and I just kept on raising it... and I cannot believe everyone's generosity... Oatie has raised OVER $1200! He has a few more pledges to come in... and Oatie's Sister and I have made some "bling" to stick on his bike.

Oatie is amazing, he can walk about 20feet on land which is brilliant in it's self... but on his bike he can ride for over half an hour. Yesterday, he rode on our hard surface patch at home for 30 minutes and when i told him that we'd have to take him off the bike as the bus would be pulling up soon, he asked if he could ride to the end of our drive where the bus drops the kids off...

As the bus approached... all we could hear was cheering and screaming... all the kids on the bus cheered for Oatie...

I just hope the weather holds out for him...

Oatie would also like to one day do adaptive surfing... (good job I'm a swimmer and ex lifeguard!!!) and a parachute jump... he saw my photos of the one I did when I was 18... and would like to do one too, I told him he'd have to be about 18 but he said ok... oneday...

As he loves biking so much, I think that in the future, I'd like to get an adaptive Tandem bike for he/I so I could take him on the the "ride to conquer Cancer" which is a 200km bike ride... I managed a 60mile/100km London to Brighton in England when I was 11... so I am sure I could do it, if I trained hard enough... so It would have to be adapted that when he was tired he could rest his legs... but that would be so great. My friend was telling me about some triathletes who take their sibling who is unable to enter a conventional triathlon on adaptive gear so they can come too....

One thing I do know, Oatie LOVES sports, high paced action sports, he's such a sporty kid... just like my other two, I love it that we all share a passion for sports together/individually... I think giving your kid "fitness" is a precious gift these days... and I was telling another lady at swimming how the government does NOTHING to help get people who can't run up and down their stairs at home to keep fit... to keep fit.

The bike will help keep Oatie fit, as does his swimming, skating and in time his skiing will too, when he learns how to lean or control his bi-ski himself...

On a separate note... Oatie has discovered felt tipped pens.. he has crayons but really doesn't like them. The other day his big sister was colouring and she is such a sweetie she shared her felt tip pens with Oatie, they were special as she got them from her birthday... but she shared them fully and helped Oatie with the caps etc.

Oatie has discovered ART... the drawing above is of a River and the Ski Mountain!

Unlike lots of other 4/5 year olds, he is very respectful with them, he doesn't push down and damage the nibs he colours with them like he was much older.

A quietish weekend after a manic day, which consisted of swimming, getting some forms for skating tests next week, picking up my elder two, shopping for birthday gifts for their friends... home and lunch, ice skating and making birthday cards, and decorations for Oatie's bike ride... Phew! Glad it's date night...

Looking forward to a nice takeaway/take out and a film!

Hope you have a great weekend too.

Sunday Triathlon... ice Skating, Swimming and Bike riding...

Sunday we had a very fun packed day... the Oatie wanted to go Ice skating, then the kids wanted to go swimming and then bike riding... Oh and we slipped in a quick hair cut all round... cupcakes for my eldest's class party the next day... a BBQ and later on hot chocolate and fire pit toasted marshmallows...

The ice skating made me tear up a bit as one of my older two's figure skating friends was out there and he really likes Oatie. This boy is an only child and has a special bond with Oatie.

So there was Oatie, wearing my eldest's hot-pink ice skating carnival top... with 3 really good figure skaters for their ages all fussing around him and my husband too. It was super cute and it was the first time Oatie has ever had a friend on the ice before (apart from his family...)

After that we had to dive to WALMART of all places, to collect some photos for the kids to take into school for Father's day projects... we bought some flip-flops for the swimming pool too.... then we went swimming. When we got home we played inside a bit and had a snack...before heading out on the bikes which is always great fun, followed by the BBQ and then hot chocolate and marshmallows... oh and we squeezed in 30 minutes of one of our favourite family films too.

We had a great day, but I have to admit I was pretty tired by the end!

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.

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...

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!!!

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

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!!!