Monday, January 31, 2011

Fantastic a Government Agency that appears to do NOTHING!


Well the good news first I feel so much better - Hooray!  Oatie might return to school tomorrow which he'll love.  Santa brought Mummy a "Re-bounder" and today was the first day that I felt well enough to have a go, it was amazing and awesome, and actually quite addictive.  I feel like going for another bounce.  Another ABR family recommended it not for her son with CP, but for herself..., and well I recommend it too!  I know you're bouncing, but it's very uplifting and rejuvenating, and a good place to get some aggression out when the world run by idiots makes you cross!

Well, the nice Speech Pathologist who works at Oatie's school, referred us to the Children's hospital for Oatie's speech... or so we thought well we've been referred to the most USELESS govenment agency that exists... I challenge our followers to tell me of a more stupid agency.

Well the whole thing was a joke.  They sent out a letter which we got one month after the letter date for some reason as did our Dr as he was laughing about it also, so I know it wasn't just lost in the post.  Then it stated that you had to phone OR email to make an appointment for them to call you to discuss your child.  (This happened in about 5 minutes,....So I emailed, and got a rude response back, and said that I had to phone, so I phoned, and got this persons voicemail, and then she emailed me saying I got it wrong.. so I phone back and left a message reading out the paragraph where it clearly stated that you COULD email to make this appointment, and then I emailed back to her email I think it went back and forth again, when eventually I said this is CRAZY just phone us, one of us is by the phone and let's just make this phone appointment, (which we did and the earliest was a weeks wait to be phoned!).

We got our phoned appointment and then they said that they couldn't read French, well that's fair enough so why didn't they contact the speech lady at my sons' school as she's bilingual anyway.  So my husband filled them in on Oatie and he got asked a heap of questions (this is for SPEECH) but how well can he walk, how good are his feet?  How well does he sleep?  Well after the barrage of questions, they are not allowed in the region to sanction the use of an Ipad or an Itouch (just in case Oatie used it for another purpose?) what is he meant to go and do, go on to his day job at the exchange, grab an i-novel, on-line banking, more like he might use it to draw and develop his fine motor skills?, and Oatie would get maybe a few hundred dollars towards an archaic speech device that probably would cost thousands of dollars and weighs far more than an ipad!

Our expectation from this "department" was that they would look at Oatie as a person and see which speech device would be best for him and see how his hands moved and how well he tried out different devices to help his communication levels.  but no!  We are being posted some leaflets!  FANTASTIC! so useful? Not!

Last year, there were these two mums at my older son's school and they were nattering about their kids speech therapy, and I couldn't help but interject, "they have speech therapy?", well everyone in this area has speech therapy, in England unless you have a real problem communicating like having Cerebral Palsy for example you wouldn't get it and even the "criminal-esq" scummy people all spoke to an acceptable standard.  Well anyway this one mum said that her daughter's speech therapist said that her daughter wasn't speaking for "control" issues and this other mum's sons' speech therapist said he's not speaking as you'd like as you don't ever play with him.  So these kids, get speech therapy for other issues like how their domestic "bliss" is like or isn't in these cases, not because they have an actual problem speaking, and probably cost the state many thousands of dollars as they went for a good year, the parents got to pick when they quit... but Oatie, who has Cerebral Palsy gets this for a referral!??!?!?!?  $200-300 dollars towards a piece of junk!  Fabulous!

So what this "department" actually does apart from being paid to be useless? is a total mystery to me and to my husband who after he put the phone down said, what was the point of that call?  the mainly asked about his legs!

I will go back to my son's speech pathologist and tell her of our fantastic experience after the referral and I guess start over again? C'est la vie!

Well in our nearest town, people in wheelchairs are obviously not allowed to "drive", we went to the Vehicle registry to renew our vehicles plates, as the step up is just over 1 feet high!  I struggled getting Oatie's Stroller in the building... I don't know how anyone with a physical impairment would manage!

When I was Senior high age, my friend and I were on a school trip together and I remember her beach bag had this slogan on it, "Life's a Bitch and then you die"...  At the time I thought it was a rather pessimistic  slogan... I have been a "minority" I suppose,(as I don't see myself as one) my whole life (my skin colour), but I never let bother/define me and I never saw myself as a colour...  Now I'm the parent of someone in a minority, Oatie, even though it's not dwelled upon if you know what I mean, society or the world doesn't let you "Blend", people in the same "label" as Oatie, are treated as a stinking diaper/nappy, and have 1 feet steps to get into a building which anyone who could drive, should be able to get in the building...which includes people in wheels, which just draws attention to the struggle and being humiliated,  rather than letting them be and blend... and get substandard treatment!  Same as swimming pools, like the "Disabled Hoist", where you get hauled out like a whale, why not have a gradual slope to the side of the pool?

Ohhh that's right, they have idiots running things!  I really firmly believe that anyone who has the authority to plan, design or authorise public/community building really should spend each year a minimum, of a week in a wheelchair and see how they like it!  Go and visit a school that they designed or authorised and see how wheelchair accessible these public/community places are!

Oh and we got 2 hours of Manual ABR in today and he's going to get 11-12 hours of machine.

Sunday, January 30, 2011

Happyland Vs Errands... arghghghg! don't you just love them...!

You might have guessed that I like to "Rabbit" on,... yes I am a Chatterbox, and have been since I  could talk, and haven't stopped since, (unless I lose my voice!) but now I have our blog! and you could probably tell from the length of the post, when I'm blogging from my i-phone or from the luxury of my keyboard.... Fortunately in my former-life I was a PA so touch typing does have it's uses!

Yesterday while Oatie's daddy and our older two were having their Ski lesson, Oatie and I popped up to town to get my elder two's skates sharpened, Oatie has been drawn to Hockey since we moved here 2.5 years ago, and the old-timers when they see him give Oatie some pucks so he has collection. The skate shop does both Figure and Hockey, and have a Huge TV with either sport on there., yesterday a Hockey game was on and Oatie was shouting Good Job when he saw a goal! The nice man who held the door open for us asked if he played Hockey? (Yep a Dagger through the heart moment, I just said not yet...) and then later the nice man was watching Oatie in the shop looking puzzled... as he could hear that he was intelligent from what he was saying to me, but then looking at his legs...

We had a fast dump of snow so using Oatie's wheels was not an option so I carried Oatie in, he was amazingly good, he knew why we were there and he wants to skate SO bad, and our backyard rink is a right-off this year, it is now 4 feet high of snow! so as it has the  mesh fence around it the snow is trapped.  You can see just the top of our Hockey Goal poking through the snow.  Oatie walked everywhere holding my hands and we looked at bags, to tops to hockey stick to whatever he wanted to look at and my favourite thing he does at the moment is "What's that?"... "What's that?" the game can go on for hours, but he just wants to know what EVERYTHING is and what EVERYTHING is called... and I can't deny him that! so after we announced everything in the shop, he looked at the blade covers and picked out some snakes, I thought he wanted them for himself, but he said NO, for his Brother... and what I loved was he carried them in his not so good hand, dropped them did a full squat, while holding my hand and dropped them and another squat... he was so good.  My kids skating coach gave them a Reddi rink as a treat for being hard workers, so think I'll get that out and maybe Oatie can have some fun on that.

 Today started of how our usual relaxing Sunday's have been our week's usually  fairly action packed so it's nice to have an "unwind" day... but not today, The Elder two had their early morning skate, and Oatie was playing his Happyland... which my older two like to play with him too, we alternate between our Thomas more serious set for half the year, and then Happyland for the other half of the year... set up in our Bonus room.

 I love Happyland, and when my eldest was a baby this toy shop always had a buy two get the 3rd item free so we have a huge set.  Oatie loves playing it, he sets up traffic jams or multiple trains or bath's the characters.

My husband who's the sensible one, reminded us of the impending errands that needed to be done, (my eldest)"oh no! we have to leave the house on a Sunday?"  In-between the questions why you don't get a "Snowbow" when it's snowing and Sunny from my daughter.  I remember the time when even with the three of them, Oatie as a baby, I'd have the double stroller and my eldest holding my hand, and pop by the Supermarket for some bread... or something you fancied for dinner...

 Well now, our shopping / errands are kind of compartmentalised, I have a Super app on my iphone called "pocket informant" it's available on the ipad too I believe, and one of the organising settings you can have a "project" with contexts for tasks, and each context is say a store, so under one project called shopping, I have all the stores, so if we head to town, I can see everything that we need to buy at that store, for me it saves so much time, so efficient and that what we do so we can get our ABR hours in.  Yes, when I see someone with a pint of milk, I do inwardly smile, oh how that was once me...We bunch up the errands and hit them in one go, in a logical circuit.  That way we do that once every 4-6 weeks rather than weekly, you save on the drive there and back and can systematically get through the list fast...as no one is really enjoying it so no one wants to browse and job done....  On the way home we stopped of for a meal treat, one that the kids weren't expecting, yes it was the one with the Golden Arches, say no more, and you can see who LOVES it, the photo at the top.  We don't have that type of food very often, so when we do the kids really enjoy it.

So that's how we deal with errands, bunch them up and get them done.  My husband does the weekly shop on a week-night .

When we got home, my husband bathed the kids and washed their hair and they settled down to watch a film, while mummy made home made snacks for the week+ banana bread, granola bars, chocolate brownies, gingerbread cookies (OK I have a secret addiction for them! well they dunk fabulously in a cup of tea!) and I'm making a Valentine's Cake, I banned my husband from buying me a card and flowers years ago, I'd rather a mug that I can enjoy day in and day out...(let's see if he's reading my blog!!- joke) and will Ice it tomorrow and pop it in the freezer, and I might go all out and pipe some Royal icing flowers which I'll make and store and then assemble the day before.  Oh and my darling husband did Oatie's Neck ABR exercises while I was baking.

Oatie's up to 15 flashcard words, today we added 'Flower', today we combined two of his flashcards and he was delighted when he read them... it was "red car".  Just before Bed I put on on Oatie's favourite Tune of the week which is Black Eyed Peas "Meet me Halfway" and he stood up in open space and bopped for almost a minute before diving on the beanbag.

Well I would have rather been at home playing Happyland, but at least the errands are done till the end of Feb lol!



Saturday, January 29, 2011

Oatie Buggy Skating!

 Today my eldest two had a figure skating clinic with a famous male figure skater which was really nice as he's a really nice guy.  So my husband and I did "Oatie Switch" whereby I needed to chaperone our elder ones and then mid afternoon he does a "drive by... with Oatie" so he pulls up out front, I hop in the drivers seat, we exchange keys and that's Oatie Switch done! and my husband stayed with our elder two so Oatie and I could do our ABR session today.

We got in 2.5 hours which I was pleased with as still don't feel 100% and neither does Oat.  Well lots of snippets happened today, nothing major but my middle one is still enjoying her Sorbothane lined hat raspberry in colour... I start singing the a prince song "she wore a Raspberry Beret..." yes I am old enough to be a Prince fan...  She actually looks steadier without her helmet, which I have to admit, I can't look as having one brain injured already....  Whereas my eldest, is actually is safer on the ice, on land he falls up the stairs, down the stair, slips lands on his bum on the floor... on the I  I think I've see him fall 3 times this season on his skates maybe, if that and when he does he falls well.

Well they had a blast, and Oatie and I had fun at home, below is a snippet of Oatie dancing wheeling his shopping trolley/cart.

Rink side chat is always bizarre, well once again is a minority bullying within a minority, something that I have found odd, like at French school the bulling against Oatie's cerebral palsy.  Well, we live in a hockey town, thru and thru, and for the seminar the town REFUSED to let our club hire the community room which they would have got paid for, because it was the figure skating club... the room which is up a level in between the rinks, sat empty all day not a single user....  They were saying how for Summer camp the town has cut the ice amount and put up our ice fees by 45% at the beginning of this season all because we're not Hockey.  I have nothing against hockey ice or otherwise, In England I, my dad and my husband all played Field/Grass hockey at school and I keep my husbands hockey stick near by when I go out in the yard/garden at night...

So our skating club gets' bullied by the Town and by the Hockey community for being a figure skating club.  Out of all the day to day people we meet, the parents at the club are the most supportive and interested in Oatie's Rehab, I'll give them that.

Well I'm not fan of PC, Black is Black and white is white, why have all these fancy non de-script words... I'll never forget when I did "Check in" for a National Airline and this lovely FAT man came to my desk and bought one seat when he'd need 3... so I said to him, I don't want to offend you but how would you like me to describe your "request" to the guys in "close outs" the people who could give him "free" if space was available seats rather than making him pay for them...  He said, please tell them that I am "hugely FAT!"  Well I phone up and said "I have a really NICE gentleman who requires three seats, because of his body size..." and they were sweeties and gave him 2 extra seats complimentary. 

Well the parents today were chatting about which way people spin and the ones who spin the other way to the "norm" have funny terms in the skating world... well unless you're Patrick Chan and is an ambidextrous skater..., and one mum said I spin the "retarded way too!", "retarded" isn't a word we use in England any more in descriptive language as it's considered rude.  Then they went on using more terms usually reserved for handicapped people laughing... at least at themselves.

Well at my kids level, the parents for the most part are all encouraging each other's kid and it's a nice atmosphere on the bench.  Where the older/better standard skater is out there it's all catty, is the way I describe it....  Even-though for the most part it's an individual sport, we are one club, and the skaters can learn from each other, one of them might be able to show or explain in a kids way that just makes that skilll click for another kid...  The reality of reaching the pinnacle in this sport or any sport for that matter is an not an achievement reached by most, so why all the hostility, catty, bitchy behaviour?  This sport is an unforgiving sport, repeated pain, you could be the best skater in the world and catch the wrong edge and one slight minuscule mistake and it's game over.  So the skater has to skate from their heart (not their parents), aspiring for the Olympics if that's their dream, but really the parents on the bench need to take a deep breath and remind themselves that this is their kids activity, cheer in their triumphs and give them hugs when they fall or things don't go how they planned, why do they sit there on the edge of the bench, glowering at them or shouting "tips".  Or when their kid has moved up a level, not all but a good amount of parents will not speak unless they have to to the lower group parents... - ridiculous! 

The reasons...I don't understand the bitchy, nasty side of people really, actually I find it unfathomable, How can people, actually devote energy and time to be purposefully rude and mean to people, and have to remember who they will speak to and who they won't, and who is beneath them in their eyes.  Ludicrous!  All that energy and conscious thought and NEGATIVE energy, rather than just being able to enjoy your children having fun and learning new skills, keeping fit and making friends. 


Well, I know one of the reasons and it happens to all humans when they are in confinement or over congested...  Our club cannot get any more ice time for the growing club  in a small town with 3 Full sized ice rinks, who have many successful skaters past and present and upcoming maybe to the Olympic team, because the Hockey teams won't get all the ice that they want.  It's almost like the town is trying to Squeeze the club out.  So our Ice sessions are all FULL... so there is little margin for error and on occassion skaters do by accident get in each others way... or in the senior sessions they have this stupid pecking order thing which the parents could irradicate and get all the skaters together and just have it out in an open forum and just say either skate with courtesy or get off the ice had cool off... but just let it continue... as there is protocol on the ice depending who's in a lesson, who's music is played etc....! but due to the pecking order it at the higher level isn't being observed... 

During the day at the rink it's a joke.  Apart from the pre-school learnt to skate programme which is fabulous, the rinks are allocated for Shinny at lunch and unless a school wants to use them they are left EMPTY for most of the day.  They won't allow public skaters to skate on them and there is only one public figure skating session a week.

Well my older two did really enjoy the day, and I felt the more they cemented/bonded their friendships at this stage, if they have strong bonds and us with the other parents can have a good bond so to speak, maybe our level of skaters as they move up, can stamp out this nonsense!

Which was my point really, seeing the photo of Oatie so happy on the ice, I must progress his ice sled/ or being permitted on this "town's" ice of inclusive skating.  If they are like that to figure skaters what will the town be like to Oatie?  Unfortunately due to Oatie and I having the lurgy we haven't been able to get up to the other side of town to check out the sled skating yet.






Thursday, January 27, 2011

One year since our diagnosis of Oatie...



Well it's too late to un-post Yesterdays post now...!lol!  Today we had a good first day back on the Bench, we did 1:45 I thought we'd see how much we could do and Oatie, Crystal, Wow and I had a great time.  We watched Winnie the Pooh in French.  Oatie hasn't made it back into school... yet.

Oatie has improved so much since we started ABR, I remember Annie asking what was our goal/expectations did we have, and I said any improvement would do... I'll see if I can dig out a photo from last year.

Something my eldest said, my eldest's school has around 700 students in the whole school, which isn't a big school by any-means, and well I said jokingly more than anything, make sure you stay away from anyone with the lurgy (cold/flu) at school... (he has a fun few days lined up) he chimed back, no one is sick at my school.  Which got me thinking.... how come in a school of 700 which has kids from G1-G12 do they have so much more reduced sickness than at my younger two's.  A Grade 12 student would be involved in far more social groups out of school, than say a Grade 2 person.  The whole Grades 1-6 were in close proximity for weeks rehearsing their fantastic show.

My younger son (Oatie) and Daughter's school has a total max of 70 kids in it.... Yep 70!  They perpetually have different plagues going around all the time.  The difference is that my eldest's school have a "lock down room" if you're ill and get you sent home.  My daughters and Oatie's just let people who have vomited during the night go to school a few hours later!

Oh and my daughter has been bullied again, to the point that she was pushed over on ice in some slush... a very strong email to the school from her mummy.... and well, I was very impressed with the response I got back, they have been really good and done some role playing in class and have taken it school wide,  of social behaviour and antisocial behaviour and they are planning a everyone's different theme but everyone should be accepted.... which I'm really impressed with.

Wednesday, January 26, 2011

The Flow.... For Phil, Part B (Hope you got the Eggs already)...rest of 2:41

This was written just after we went to the Ski Shop in December 2010... and Oatie crying made me cry....
Well, I've been reluctant to posting it, I suppose as it's one of the more personal post.

This evening I bumped in to a mum who's kid was in my eldest class, the left the school last school year, with the vision of returning, the mother was in her "Sweater dress" swanning around like she owned the joint...and said "Oh Hi... I see nothing has changed... still LUGGING HIM in your arms"  (Him was Oatie) being some what stunned at her rudeness!  So I came home and said Stuff it!  The post is going up!

Remember: I am not complaining, nor an I miserable or depressed, Nor do I want Pity, HOWEVER!!! you may throw eggs at YOUR screen if it's an anti climax!!!  (I won't be there to clean it!!!) and before you read further my home isn't a sewage pit!

Well I'm starting to feel better when I'm ill I stuff being PC in the BIN (Garbage), so it's one year since we found out about Oatie's Diagnosis.  So in your Honor Oat.  and just for you Phil... you had better laugh!!!

And this was why I was thinking of "Bring a Mug" afternoon...

This is how the post was written in December...as it was...
------------------------------------------------------------------------------------------

Well, I'll put the flow down (I'll try with out the emotion), here it goes...

You have Oatie with Cerebral Palsy, you have NO support, Dr's want to chop them up and put metal in them and scan and label them, and chuck them back at you, you find the only thing that actually helps, but isn't medically recognised (probably as it works and would put these useless documenting/chopping people out of work), but ABR, it's expensive <but it does work>, you're rock (partner in life) has to therefore work all hours to pay for the treatment but can't help out with the physical treatment side as much or the chores, you have no immediate support network, even though you have family not more than 5 minutes away, you juggle a hundred plates continuously, trying to have a balance for everyone, and strive for equality amongst your children and fight for them in their daily lives too as well as Oatie, meanwhile you can't work as you have a true-dependent-dependent (even-though you wanted a family while you were young so you could resume your career and financially planned that you would, but now can't), so you cant' earn any extra money, you planned for most eventualities just not a born disabled child...you get told by 'people', it was your choice, it's your doing, you made your bed....I accept that, but you don't plan for a child with big challenges.... just take one everyday ordinary task that you took for granted when I had 2 able bodied children, like cleaning your house,....you then have the toss up of cleaning your house or treating your son, (ok my hubby nicknamed me Monica from friends) "Friends" that's so funny an unintended pun and a TV show to make you feel worse, so totally unrealistic (as if you had friends like that then you wouldn't feel like this), so I pick treating my son over cleaning the house, so even if you had a "friend" round while you treat your son, you feel that you cant' as your home isn't clean as you'd like, I used to love an immaculate home, but presentable would do these days, I've adjusted my reality radar HUGELY on cleaning my home but even then with that huge adjustment it's still under par, as you then have the Healthy Square meal or junk, yep we go for the healthy meal, but you can't afford any help as you're paying for the the treatment, and then you're not allowed to complain (society and family dictates) or to your nearest and dearest  or even utter a word of upset as that's frowned (in my culture TOTALLY) upon so you suffer in silence and slap some gloss on it, (with the exception of my lovely hubby (an one other family member who will remain nameless) but I don't want to bore them in a coma and I do have a special friend who's ears must go numb with my rabbiting on) Which isn't an ounce of what Oatie must feel on a regular basis (It all spills out from Oatie when you visit a ski shop for example, the poor love must bottle it up and out it spills when it's in his face), which makes you feel selfish for feeling all the above when he has way more **** to deal with...  And no, my husband nor I are skiing (we felt that it would be nice to give our older children an opportunity and a taster of one of the national sports of our now country as their (lift passes are pretty much free this year because of their ages)  my husband and I are pretty good skiers, so our aim was to get the older to with ski feet to stop and turn safely, and then when Oatie's ready and I've sold my hair...(I'm joking about selling it, I grow and donate a wig length or two to cancer charities, when it's long enough) we can get him some adaptive ski gear oneday....and yes the aim is we ski as a whole family...one day.  We have already cut out obvious luxuries such as TV and landline, vacations, etc from our life before you judge or even think I would even contemplate to spend money on a manicure and then complain,  OK I'm going to find my cat....
If you ever see post 2:41, you know that I published it....however this has ended up like post 2:41 anyway....  Yep, we did 2:41 on of Manual today, tomorrow will be better as the emotion of the ski shop will be behind us and we're back on track with our manual and well I got my rant off my chest, Oatie has just started crying his eyes out in his bed (probably from yesterdays upset) up goes the gloss, going to give him a hug.... ok I'm back, he was crying about yesterday's upset, he was crying saying "I ski too" and explained that mom and dad aren't skiing either, which made him feel better, and he's settled down to his afternoon nap... the delay in posting, well, I feel like it's turned out to post 2:41 and am I brave enough to post this or not?  What if my few followers disappear too?

I love the theatre!


On Wednesday evening I saw my brother perform in a grade 1-6 school musical and I LOVED it BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Here is part A, for Phil... get the eggs ready!

OK. Here's the thing... I've been laid up in bed the past day or so, so Oatie's having a ball playing the loudest 3 most irritating toys for his dad who's working from home.

When I threw up on our deck, Oatie cheered and clapped "good job mama... Really good job.. Now shaking his head with pride... Excellent mama!"

No I'm not with child, it's a long boring story but I have a screwed up endocrine system. I tried a new med without food as this wonderful Specialist said and printed on the bottle, and after being sick for most of the day, I looked online and best to have WITH food like a huge meal!!!

This post below was one of the few I didn't publish last Thursday...

The flow from post 2:41 will be published as part B, I don't do PC when I'm ill, so this is dedicated to Phil who said he could do with a laugh!

So here's my disclaimers disclaimer!

---------------------------------------------------

So from last Thursday...

No Laughing...I started to write a post about people being totally irresponsible with their two year olds, by trying to get their toddlers Killed in the car park, as on slick black ice these idiotic parents let their 1-3 year olds trail 15feet behind them on their own at our Rec centre car park where it's poor visibility for drivers to see and if the driver tried to stop they wouldn't. The parents are sipping coffee or chatting on their phone not like they have an arm full of other children! To then re-writing it... I think this is my fourth attempt... well the indecision of which post as my Husband is working and I have been waiting to watch one of our favourite shows together since the kids went to bed...

I got tempted to post the "Flow" the bit from post 2:41 that I haven't been bold or brave or stupid enough to post. I almost got tempted too....

My reservations for not posting the "flow" post, is that I think it would come over as me; complaining, moaning or being depressed, neither of which would be true. Another Blog that I follow said the same thing, that the keyboard doesn't let you convey your feelings as you would from a "face to face".

Maybe I will publish it, but put a huge disclaimer for it to be taken in the way it was meant. The reason for the re-think of posting is that a friend of mine was saying how she never see's me apart from when we're nattering when our kids do an activity together and wanted to meet up for coffee.

Well, I know coffee mornings aren't a novel idea, but I wanted to start a "Bring a MUG" once a month at our house. So if people really wanted to see me, then we could have a social and if people wanted to turn up they could... the idea for the mug was so people could recognise their own drink.... and then they also take their mug home too... so no 80 mugs to wash afterwards..... and I could see my friends as since doing ABR, my time has become regimented.

Regimented sounds too bland, I have a "window of Opportunity" from when we started ABR from the time we did till he's 7 to make the greatest gain. Being an ex-and maybe once again an endurance "athlete" I'm not and didn't consider myself one, but my friends did. I set my eye on the line and go, never been one to be competitive with others, just with myself. Well that's how I see ABR if you're going to have a go, do it with your heart, give it a fair chance and commit. What's 4 years? Like really... We look to do ABR longterm beyond the 4 but I think it would be a nice case study for the ABR team as Oatie's had no other therapy or intervention than just PURE ABR.

I want to make clear that I LOVE all my children equally, we don't have favourites in our house. And Yes, if I could magic away Oatie's CP I might consider it... but would that change who he is...?

Monday, January 24, 2011

Well, We had a great Manual ABR Day...

Inbetween me feeling mildly feverish - hey! no laughing... Oatie and I did 3 hours. I concentrated on his lower half and did an hour on each lower exercise as I didn't want to make him uncomfortable or move him too much and he was happy and I thought I do as much as I can without making myself feel worse.



He had his bench companion join him Crystal and he really enjoyed that I think as much as she did.



We started off watching Baby Einstein, Oat goes through phases of what he likes to watch, his choice was "Baby's first moves" well, the last time he watched that one was a year ago, I did say are you sure... (It's kind of rubbing his CP in his face!) he said yes, and after having a discussion in my head about whether I should have let him pick it or should I have shielded him from watching it... as yes he see able people walking everywhere but not how to crawl on DVD or how to stand on DVD as this one is on... So I had just decided that if he asked to change it I would casually and not make a thing of it and put the car Baby Einstein on as he loves that one. When he said different one..., so I said I like the music on the car one, he agreed so we switched....



The other day with my PC self screening on having a kid with CP I know... PC-CP! sound like the CO-OP lol! I wrote a post about people taking un-necessary risks with their kids, I don't mean an "organised activity which has risk assessment, like the Scout Troop I help with went Snow Showing in a Mountain resort at the weekend (I couldn't go as I didn't have anyone who could take Oatie for 9 till 5pm), there was an avalanche warning but not for over 10 miles away) or skating or riding your bike, all have risk but acceptable risk. Today I let my middle child, figure skate without her helmet for the very first time, she has been jumping and spinning for a whole year without incident, and the head coach has given her falling lessons, her hair has grown so she can have a ponytail (added protection) and ok... this might be a bit far... but I bought some sorbothane sheeting and lined an inner woolly hat with the Sorbothane all around the head and a double layer around the back of the head and she puts a very pretty hat on top. (Sorbothane is used by runners for shock absorbing insoles, so runners save jarring their knees and no shin splints etc). My dad took my older sons helmet of him last year for his figure skating and vetoed me as his Grandad and said he loves him soooo much, and told me that my eldest has the "Right to live" and not live in cotton wool just because of Oatie's condition, we had just found out one year ago tomorrow.



Well I saw something that annoyed me unsupervised children, and well today it was worse... We were at the rec centre and a person I know's 6 year old went missing for 40+ minutes.... the mum was chatting as always and neglects her kids, and lets her 6 &1 year old roam freely in a public facility each week. The one year old has fallen down a flight of stairs, I went to take my 7&5 year old for their yoga class and saw this girl bounce down the stairs on her head, I carried the poor girl back to her mum and explained what happened and she just SHRUGGED her shoulders, like whatever, she's fine... Well today her 6 year old went missing, mine were in their supervised Yoga/jump class and so I helped her look for her daughter, I bumped into a neighbour and she joined the search, we got the Rec Centre on lock down and they phoned the police, they had every rec centre staff from cleaning to management with tabbards and on the PA system to find this girl. EVENTUALLY the found her POOLSIDE and I know for a fact she is a weak swimmer! The two pools were heaving with lessons, and swim club and for a girl that small to be there without an adult not knowing and not looking out for her could have been catastrophic... from life guarding myself as a teen, we had strategies for a busy pool, we would lifeguard as a team and it was almost like a dance, we'd rotate and one would be perimeter sweeping, one would be looking at the bottom looking for possible bodies, one would be head counting and one would be up high on the highchair overseeing. I know that at this pool a lifeguard refused to jump in for a girl with epilepsy during a seizure, her mother told me, as it was a pre-existing condition fortunately her mother was a lifeguard in her youth too and jumped in and saved her (this was 5 years ago) before we moved here. So when our kids Skating club for the summer camp had swimming as an afternoon activity, and it was my volunteering day to supervise the kids, I had my swimming costume on under my clothes shoes off and (I know I must have annoyed the lifeguards there, but they know me as a regular swimmer there) as I lifeguarded the kids I supervised as after the epilepsy story I couldn't trust the lifeguards and either myself or my husband were present poolside.



So when I look at my beautiful Oatie and see the struggles he has on a day to day.... and then see this mum who is a nice person, just carelessly put her kids at risk, not once but all the time and for no called reason its not like she's nursing a baby so hence restricted... and my husband says it's neglect, It really gets on my wick! How many times does her one year old have to fall on her head or the 6 year old to go missing? This is a public facility with 3 rinks, 2 pools and a gym and multi leveled and full open access, I said to the mum once we found her, I still feel sick, like we were fearing the worst... I asked her if she did and she said NO! the other mums who were helping felt sick too.. I even phoned my husband who was going to pick us up outside, as if he saw someone leaving with this girl, he'd recognise the girl and intervene....and he felt sick, during our dinner we still felt sick. Before the 6 year old went missing the 1 year old almost head-planted down the benches into the concrete another mother grabbed and saved her! James Bulger, Maddie McCann. How can people treat their kids like that? How can they take their lives for granted like that?
BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Malade Lundi!

Well today we were only 3 in the car for the school run. Oatie was malade, It was a shame as the lovely French Speech Therapist was coming in to visit Oatie at school today. My husband did say to the school about the lapse schools sickness policy or the lack of enforcing it... Anyway they know that's a problem at least they are aware that they could try and enforce it better which is better than denying it is one. One of his friends left school after being ill and making 6 days at school in 2 months. Oatie I think gets it worse as his hands are on the floor a lot of the time. For a sick bunny he's full of beans! My throat feels awful, but I'm going to try and do his manual ABR; as he fed his bus breakfast with a spoon, told me to say "cheese" as that makes you better and said bench mama 3 minutes OK!!?!?!?!! so with a fed bus and a good old smile how could I refuse! Oatie walked to feed his bus breakfast BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Sunday, January 23, 2011

Instead of Sore Throat it should be called RAW throat!

My throat is so sore! Well I wasn't up to much today and neither was Oatie, so we had a pj day at home. My older two were back from the rink at 9am and we rolled out some gingerbread cookies (yes it's my latest obsession) and we played, watched some films, I did a small sewing project and My eldest flew his remote controlled helicopter thing and my daughter did some crafts. Oatie seems better and is snuggled with his ABR machine on.

Occasionally Oatie spontaneously stands up so I snapped a photo of him and one of him eating some of his Christmas Chocolate, yes, he has some every now and then... I think his stash will last till Easter!

School tomorrow, I had better get on with the packed lunches.
BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Saturday, January 22, 2011

Oh which one to post...

Well, I had written a few posts the last few days, but then changed my mind well they weren't very PC, so I have 6 now in my drafts and didn't post any of them on Thursday or Friday.  Today Oatie and I are ill.  My older two and their dad are out for the day.  So between the fevers I manage to do something whether it's putting on a wash or making Oatie his lunch.  The one thing I detest most is being ill, is that I want to go and do things, but feel too sick, I see all the chores piling up.  I wonder when I'm feeling like that if Oatie feels like that, like really wanting to go and do something but can't...  Today, I want to go and bake, and clean the house and maybe take Oat out shopping and do some ABR... but on a day like today climbing the stairs wears me out.  Where my desktop is, it's nice and cool, so I might be back later...

Wednesday, January 19, 2011

The laughter is echoing !

Just a funny snippet, today the "knight" was walking out of Oatie's school with me when he saw the girl with crutches for the first time, and he was shocked that she was parked there, (he didn't see this mum yesterday) and he seemed genuinely annoyed that she gets to park there but not offered once to Oatie... so he loudly said slightly sarcastically, loud enough for the mum to hear, "Maybe you and I should park there, we have little kids, we have our arms full..." at which point I was grinning, (as I knew why she was parked there), so the mum very curtly snapped back " my daughter has Broken her leg, so I HAVE to park here or she can't come to school!!!!", I couldn't resist, I wanted to seize the moment, (not to be mean), but I really wanted to plant the seed in this ladies head, that other people have that "inconvenience" that she is experiencing everyday - forever... (her daughter has 6 weeks of difficulty getting about) so I said, "well my son is disabled" and she could see that I was walking back to where we had parked, he then later said that's "outrageous" (at the two tier system) shaking his head, which made us both burst out with laughter.



I was so chuffed that someone who wasn't an Oatie supporter at all has turned around so much, for him to outwardly say to the mum (the girl with the broken leg) that it was an outrage, to saying that if I wanted to park there for Oatie, he would help me campaign the school. If Oatie was older/heavier or more physically restricted then I would, but now we're parking where the path is the same distance, but just about walkable and is flat, I don't mind the trek.



Our town seems to be open to disabled people well that's what they advertise, I'll be seeing how friendly it is as my next stop is campaigning at our rink for inclusive skating to be permitted! One human on side, a few thousand more in town to go... BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Tuesday, January 18, 2011

Cavemen R us?

Oatie standing, he was a bit scared, he's never stood on snow on his own before
Today Oatie experienced 3 of his classmates laughing at Oatie's cerebral palsy, how he walks to a broad range of his physical limitations. It went on for a good few minutes with giggles between each nasty comment. So I did say to the lady in charge, I know kids will be kids but... I told her what I heard and I requested that that it's nipped in the bud as comments like that would become habitual and if not told it's "out of order" the kids will think it's ok to say when it's not.

Anyway told my new knight in shining armor what just happens as I found last time I needed to rally the supportive parents to defend Oatie when the anti-CP brigade bitch about Oatie. My new knight said how he thought we'd evolved from being cavemen... So I joked back that it appears that we still are cavemen just living in a different style of cave with electricity!

Seriously what's changed, survival of the fittest, the world is based judged on physical prowess, like the Olympics, Wimbledon, Football World-cup, Basketball, Super Bowl etc, The amount of TV coverage given to Sporting Events to Intellectual TV for example, and even then the sporting events TV coverage is weighted on "manliness".  (I admit, I too love the Olympics).  I used to love watching the London Marathon, and did so as a young child till we left the UK, since I could remember, I always cheered for the "Wheelies" as I thought that was so much more impressive what they did compared to the traditional "runner".

Look at another example where many societies globally have all this FREE help in-school out of school to the intellectually UNFORTUNATE, so if you're thick there is lots of FREE help to bring these kids up-to "standard" in mainstream schools. I have nothing against that per say supporting these people, but where is the FREE help for physically restricted people in the same abundance, I've also noticed how people with behavioral disorders get so much more "help" than the physically restricted too. But if you are physically restricted you could be a brainiac like Stephen Hawkin, but you're on your own, pay financially for your or your Child's 'restriction', many times over, whether it be a special chair, essential equipment etc etc and for a bonus, in general EXCLUDED from so much day to day as even today, modern buildings still aren't designed for an inclusive community, it's EXCLUSIVE!  This FREE help isn't free anyway, as it comes from our taxes.  So we financially contribute to the well-being of the intellectually unfortunate (I don't mind that in principle) but I get none or very very very little help for my son's physical restriction.  Where is survival of the fittest now then?, looks two tiered to me... if the intellectually unfortunate person is that way inclined, why not leave them be, like it is done to the physically impaired?  It should be, help those who need help equally in a way that would be helpful, I wouldn't have a problem with that, but why help some people but not all or have such a marked difference between levels of help?  Why does it appear that those who can't create a "Stink" get the raw end of the deal?

What made me roar with laughter is that a 10 year old girl came to school in a leg cast... (that bit wasn't funny..) but what was...Did she have to trek the 200m? NO mummy took her to the door almost mowing down children as this mum drove on the school playground!!! So here's the thing, you have a 'temporary' impairment you get special treatment, the amount of fuss inside the school was funny! Gets driven door to door, wouldn't want the broken leg girl to suffer out in the cold...... But you have a long term/permanent impairment who cares if it takes 15mins to go the 200m so you have to suffer, Ludicrous!!!

Then go inside school and have your cerebral palsy LAUGHED at by Neanderthals. I rest my case. Cavemen R us? BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Sunday, January 16, 2011

Is it Friday Yet? I like the weekend!

Today, we had lots of fun, we're allergic to cow's milk, well mum's allergic and dad's intolerant. So about 95% of our food is homemade and, all our snacks for school, cakes etc. So we did some baking today.

My brother had a climbing wall session with his Beaver Scouts, I'd like to be a Beaver one day, the nice thing about the Scout Movement is that they accept anyone and everyone and it's fully inclusive, the only thing that they won't tolerate is repetitive anti-social behavior. My parents are both Scouters but with different age ranges.

We had a comic moment, I wanted to do my flashcards, they make me feel good as I KNOW that I'm really good at them, mum and dad were going to challenge me by adding two new words, but I "Swiped" another word, I saw my brother's name so I took that one too. I got them all right yippee!

We played, had a long bath, watched a family film, we read some books, we baked we web-camed with our Nana and Granddad which I LOVED. They are coming for a visit soon and I'm really excited. So a nice family day...

My marble run toy got accidentally knocked over, so mum's going to relocate it for me, so I was showing my granddad bits of the marble toy you can see in the photo.

Night Night, I have school tomorrow and manual ABR tomorrow, I wonder if mum's granola bar or fruit buns will make it in my snack bag....zzzzzzzzzzzzzzzzzzzzzzzzz

Saturday, January 15, 2011

Super Saturday...

Oatie on the bunk, passing me suffies
Oatie on his brother bunk bed helping me wash the sheets, by passing me his brothers stuffies, but first kissing each one and saying hi to them.

Today Oatie and I had a busy but quiet day at home. Oatie's dad took our older two for their skiing lessons. So Oatie and I made some banana bread, got dinner organised and did a bit of housework together. Oatie gets out his toy mop and dustpan had a good play. We finished the day with a couple hours of Manual ABR and then rest of our crew arrived home, they all had a bath, homemade pizza bit of Wizards of Waverly place and the kids were tucked up in bed. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Friday, January 14, 2011

Victor Meldrew !!! One foot in the Grave! - I did you proud!

Oatie's mum is originally from England, you probably could kind of tell by the spellings that I use, and maybe some of the British phrases.  Well, there was one funny Sitcom was called "One foot in the Grave" on the BBC with Richard Wilson as the starring role, (He's currently in Merlin also on the BBC).  Well his Character Victor Meldrew's catchphrase was "I don't believe it", the link is some of his best "I don't believe it's", but if you love British Sitcom, then check it out on YouTube... 

Well, I came home the other day, my older two had just finished an activity and my Oatie was at home with his dad, having a nap.... and I got home and the first thing I said was 'I don't believe it!', at which point my husband also British, roared with laughter, (he loved the sitcom too, but when we watched it we had never met!), we're also were both independently "Trekkies" Followers, please don't abandon Oatie's blog!!!  Anyway, the thing was, my friends noticed I was being rather Broodie, and well you know I posted one about people not treating us differently because of Oatie and not mincing their words, well, I had my "wish", we were standing in a group of 4 ladies, and they were ribbing me for cooing at all the babies and how I would love to have our fourth but......, when my friend who's older than me, said how she couldn't be done with babies now, her time is past etc... and the chances of Disability is so much greater.... (At that point I was rather amused to see where it was going...) she then went on, to say how she would HATE to have a disabled child, and how horrible it would be, a HUGE ball and chain, and all the extra work and how you couldn't do everyday activities, the extra financial burden, not being able to go places etc etc etc.. and how she would HATE it HATE it HATE it. meanwhile the other two ladies had their jaws dropped open at I suppose the insensitivity, as I was standing there...  I just said, Yep, it is tough, (yep she started the backtracking realising what she had just said!!!) but you don't plan it and well it's not like you can then say, oh no... lets hand our child back!  Well, I wasn't offended, and actually found it highly amusing...at the open frankness to my face, but I did go home and said "I don't BELIEVE IT" I did it with the all Victor Meldrew's dramatics, and told my husband who thought it was really funny what she had said!

Oatie may be physically challenged, and not be able to communicate as my other two did at 3, yes at times when my arms are shaking and burning from carrying him over long distance or whilst I'm in the splits in the car-park, or when I don't know what he's trying to tell me, or when he's crying because he doesn't want to be left out and that's heartbreaking and I wish things were different, but that's not realistic and now how it is.  Oatie is so special in other ways, he loves holding my hand, he's the first to give anyone a hug if they are feeling low, and he's caring and loving and there is never a dull moment, he give the best hugs and he's so jolly and he has the most polite manners!  Laughing lots, he has a wicked sense of humor, like he could one day do "stand up". (I mean that would be funny for his opening joke!) and as you can see from all his posts he's a smiler...  He's the dedicated ABR person, he will come and ASK to have his manual ABR, and If I say in a little while, he's says, "Many Minutes?" and then he'll haggle!  If for some-reason he doesn't get his manual ABR at the end of the day, he'll cry... He gets his ABR machine every-night since we got it, which he also LOVES, but he want's both.  He's super smart, and yes you wish this "accident" which called the brain damage never happened but it has so I hope you don't think I'm weird for saying that, I feel privileged to be with him on his journey and I have no idea what he'll be like as an adult, not even a guess, I get to see what he achieves, it doesn't matter how big or small in the eyes of others, like when he put on his own glove this week, it's exciting!, yes there are often more down's than ups, but the ups make up for the downs, to me the up's are exciting.  Oatie, I LOVE YOU xxx

Thursday, January 13, 2011

Say cheese...



Today Oatie had another awesome day at school. His usual aid was ill so it was interesting to see how it went. Another surprise, one of the ex-ignorants (people anti Oatie being at school as they thought he was a danger to society)actually asked questions about Oatie and was interested in his therapy. So glad the antagonism has stopped. Because the adults have stopped the kids seem to aswell. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Wednesday, January 12, 2011

My post vanished! oh well...

Oatie in the tunnel at School this morning, (with a car of course!)
Yesterday I diligently wrote a post, but with my wonderful (I really actually LOVE IT) Iphone, I swished the screen by accident and well I forgot to save it... oops!


Oatie's recognising of site words is amazing, we added a new word "pig", and instantly after being told what it was, he said the letters and then after shuffling his existing cards, he said them all correctly... I suppose what was so endearing was when he tests us back, he's started to use inflection in his voice to ask the question back, so he held up Cow and said "what's that Dadda?" so his dad cheekily said PIG, Oatie was like, nope, here's "pig", he found it in the jumbled pile on the floor and this is "COW", it was that which I was just astonished, I guess.  My daughter self started to read at 2.5, but his retention and accuracy is amazing. 

Well Yesterday I had two questions, but today I want to throw out another?

  1. My first, was what should people say, when they don't know what to say, you know like when they are confronted with your child's disability, lots of people don't' know how to react, and go all funny, and look away or the next time you bump into each other ignore you... as YOUR CHILD makes THEM feel uncomfortable.  Or should they say nothing?
  2. Well this is more on a personal note, we always wanted four children, so did/does my husband.  So I'm feeling broodie at the moment and I suppose it's been a year since his diagnosis and I'm beginning to heal a little from the shock and ready to take life by the reins again and move on from the diagnosis...  But what would the probability be to have two children born into the same family with CP?  I hope it never would, but it could and that scares me.
  3.  Which I suppose give me a supplementary question, if people could during their pregnancy SCREEN for Brain Damage caused in the womb, I have read recently that pregnancy caused CP for example happens in the first trimester, would YOU have a scan for that? and what would your actions be?
Here is a photo from this morning, Oatie has been loving school after Christmas, he's been on the goodbye mat joining in the songs, and today he put on his own hat and one glove as he was going to take the one he put on off, to put that one on...  and today to my regular "rock" at school he said to that dad, "So X, how's it going, you going in your pizza car (it's red and all red cars are pizza cars) now?"

Tuesday, January 11, 2011

Wow offer of help! I'm chuffed!

Today it took me 20minutes to get Oatie into school on the 200m path it took ages to get out the car to get Oatie out, I ended up in near splits while holding Oatie. I sent my daughter off ahead as she was going to be so late. Anyway someone who was so anti Oatie at the beginning of term offered to help us back to the car at pick up. I was like WOW! I decided to park in the staff carpark in the end as the usual parking bay is dangerous for Oatie and I.

Monday, January 10, 2011

No School today...

Well for some in the area it was a "snow day" we've had extreme weather Since Saturday night, it's high winds -16 but feels like -30, you say, hey that's normal, but at the moment it's WET cold, it's 80-95% humidity... usually here it's really dry, so even if it's the -20's you don't feel it.

Well, I have taken my kids to school in some treacherous weather, and I know when they are there they'll be fine, but during that journey, I'm like what am I doing out here this is NUTS! So today, I heard some schools were closed and waited till Sunrise to make our decision to go or not. So I took my eldest two out they were both keen to get back to school after the long break. The roads were OK a bit hairy but ok. I felt bad as I took my daughter into her school but not Oatie. we couldn't park in the bay as it wasn't snowplowed at all, it was 3 feet high, so they only parking was in the staff car-park, the path wasn't shoveled and neither was the disabled ramp. So there was no way I could wheel Oatie in at all, he would have to be carried, My daughter in that situation would carry his backpack which is way lighter than his and I carry hers and Oatie and she does the doors and helps with his boots, holds his hands so I can take my boots off etc... It's like a comic act, but my daughter is just LOVELY. (The sensation of "breaking into School" is like walking up a mountain). His teacher saw me in the hall and totally understood, she said that when she arrived at school that it would be really hard to get Oatie in. The thing is that he's growing as kids do... so he gets heavier but I am not matching in strength! If I had more time, I would shovel the ramp myself. Only one family (if they see us), ever helps us, only 1 and I am thankful that it is 1 and not 0, and my point is... that it's not like England where some buildings are centuries old.... these are recent buildings where people have known of physically less able people when they were designed, planned, approved and built! Why don't they have a service road be designed around the back of the building say...that could be used for vehicles carrying people who need wheels and they could use it for emergency vehicles like fire/ambulance or even deliveries on each majorly used public building, on right from the onset, and not an after thought! I feel bad as I wonder if we will lose his aid, from Oatie's sporadic preschool attendance, but if he can't get in to school without it being an iron-man challenge for mummy, then he can't get into school. I've seen what it's like for tomorrow, so I will put on my winter camping gear, and psych myself up for the challenge!

Today Oatie got all his flashcards correct, first go, so his sister added Dad to his flashcards. We did 2 hours of manual ABR and as per usual, he'll have 11-12 hours of Machine ABR tonight.

Oatie is excited as he'll be going into school tomorrow regardless, come rain, shine, arctic storm, arctic front and mummy's burning biceps!

While I was doing guided reading with my eldest, Oatie spontaneously built a plane out of stickle bricks...
Building his plane
adding sound effects
enjoying his plane
BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Sunday, January 9, 2011

My first reading experience

Today my brother started my first guided reading experience, my brother and sister are going to teach me to read.  My big brother told me what the words were, only once, anyway dad came down to see as he could hear everyone clapping, and even after he shuffled the words, I could recognise the words correctly and I got them all right, we started with 3 words, Cow, Bear and Dog and my sister added Car to it.  I then wanted to make sure that my dad knew what they were, so I tested him and taught them to him, just in case....  I was using my finger but I decided to use Goldie (my toy car) parking at the correct word as my reading companion!

video
BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop 
(Mum posted 13 second video of me, but on mum's iphone it's just blank space, if you're wondering why there is some blank space)

Saturday, January 8, 2011

Ski Day

Today we took my brother and sister for their first ski lesson, I was a bit sad, mum spotted some sit-skiers one of which is on our national team. Mum pointed out the nursery slope and told me that's where I'll be starting, one day, I told her "nope! That one" pointing to a blue black, that (pointing at the nursery) "too slow!"

In the lodge I met a few other physically restricted people with paralysis to Parkinson's. At the lunch rush people kept jostling and bumping my stroller which I hated, I might be small but I'm not invisible, a older guy in a wheelchair parked up next to me so no one could bump me and said they could hit him instead and he told them off.

Mum decided that from next we will do our ABR at home and play and stay at home and dad can take them for their ski lesson each week.

I would like to ski too! And I WILL x My favourite show at the moment is Wizards of Waverly Place. Here is a photo of me watching it BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Friday, January 7, 2011

My new haircut

Today I had my haircut. Had a nice bath, I'm playing marbles with my brother, and about to go on the bench.
Look! I sometimes standup to play my marble toy. Love Oatie xxx BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, January 6, 2011

Oatie's best friend

Crystal

Today my mum taught my brother and sister how to put their ski gear on and I piped up with my boot, Oatie ski??!?!? My dad told one of our friends at skating this evening about what I said and she burst into tears her youngest is a boy and a few months older that me. This evening we popped out and I used a whole sentence asking for Timbits I was so cute look! "yummy Timbits!" BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Wednesday, January 5, 2011

Lollipops

When Oatie and I first went to Montreal to start ABR, we travelled alone by air. Travelling with a 2 year old wouldn't usually be daunting or a challenge as I worked for our national airline. But travelling with a child who couldn't stand, walk or fit on the change table on your own was a very special eyeopening experience and a lonely one. Like when you've hurt your leg and then noticed the path had an incline but you never noticed it before. Oatie is very attached to his dad and was crying on the plane when this nice Canadian soldier popped his hand through the gap in the seats and handed Oatie his very first lollipop. Oatie has loved flying eversince. This nice soldier helped us off the aircraft to all the way to the taxi rank.

We're slowly going through our Halloween candy, so today the kids choose a lollipop each, when Oatie goes "airplane yeah!"
Today we did 2:20 manual ABR

First day of school for Oatie

Today is Oat's first day back. I waited in the car as his dad took him in as I almost burst into tears; Oatie's excited about going back to school and I'm happy that he loves school but with such a long break the idea that the bullying could start up again could be a reality. Wow his dad drops him off quick he's already back at the car. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Tuesday, January 4, 2011

Swiper the Fox - PR representative for Foxes with potential CP wins again...

Yes, my beloved daughter has now convinced her older brother that Swiper is in fact a misunderstood Fox with potential CP and receives poor treatment from Dora. Today while Oatie and I were doing our bench session (Oatie hugging Swiper), Oatie's older brother was watching Dora too, saying that Swiper was trying to Swipe Isa's cupcakes and that he was a BAD fox, well that was it, Oatie's sister stated her whole case from A-Z, asking her brother where was Swiper's invite? If he was included then he wouldn't feel the need to Swipe to get attention from being ignored!


Anyway I use my iPhone for our Manual ABR, I have a app called "TIMELOGGER" I love it, I put all his exercises in it and it has a start and stop feature and you can add deductions, and well whenever you want, you can see you actual time you done, and email it as an excel sheet to your desktop.


Oatie's sister unplugged my phone, switched it to Camera and too photos of the TV, of Dora shutting a hedge door in Swiper's face and Boots smiling!


I know it's just Dora the Explorer, but what I like about Oatie's sisters theory is that she has been thinking outside the box, she has thought about someone else's feelings and also rather than just shutting Swiper up, by saying Swiper no Swiping, she want to resolve the problem or conflict, she would want to mediate, get in there and try and make a change and create understanding between Dora and Swiper.


OK and she did persuade me to post the photo she took...

Today we did just under 2:45 (no not 2:41) we could have creamed 3 hours, but I decided to help a friend in need which did take up a few hours of our day. Before we had Cerebral Palsy in our life like known which is coming up to1 year end of Jan, I would have given my time in a blink of an eye. Now, I feel torn between hitting my target of ABR hours and volunteering my time, when for me there aren't enough hours in the day. I still do volunteer with the Scouts Association each week, but unscheduled spontaneous helping out of others for me, come more from the heart now than they ever did before, not because I don't want to help but I don't tend to have "Luxury" time like I used to, everything is executed down to military precision...



So.... what I don't like even more now after having CP in our life, is people wasting my time, like if you went to a meeting and the objective was sidelined not for any other reason but it being ill chaired, for a natter (chatting about nothing), I don't mind a good chat about nothing but when that was what was planned. Or just sheer incompetence of others, which ends up wasting your time, like courier companies and bureaucrats, I hope that doesn't sound too harsh, maybe I will post the "The Flow" part of "post 2:41" to explain what I mean.


Yes, every now and then, unintentionally people put their foot in it or rub your face in it, but if it's done un-intentionally I don't mind and have no ill feeling towards that person, at least they are talking to me normally and unguarded, I'd rather that then they feel that they can't talk to me because of Oatie's CP. Yesterday a friend and I were at a public facility coo-ing over a few month old baby, it was a beautiful child and well, my friend said, we're (me and her) are looking afar at the baby, as we're past that stage, all of ours (mine and hers) are running around and independent, not at that awkward in-between crawling-walking stage. Well, 2 of mine are and one isn't, Oatie although 3.5 at the end of the month, is like an 8 month old in walking, he'll stand up take some steps, sometime he'll make his target, and other times he won't as he'll fall most of the time he'll frog-hop crawl to get around. In another way it was flattering that she see's past Oatie's CP and see him as just Oatie a kid. But inwardly, you feel the hurt, pain and loss of your brain injured child all over again, like a dagger through your heart, how you pictured your family, and the actual picture of your family. We have a lovely photo my mum took of the 5 of us when we got home from hospital with Oatie, all of us beaming, it's on a digital frame by our bench, and how we had no idea at the time that he had brain injury and what we were in store for. Our family photos still have beaming faces, just that Oatie's grin is the HUGEST!


Swiper shut out from the secret hedge door BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop
I was looking at that strangers baby, wishing (inwardly to myself) that it didn't have "hidden" CP, as you couldn't tell with Oatie when he was a baby, we bought a plastic hamburger for Oatie to kick on the ice when he could walk, Oatie's brother has saved all his skates for Oatie, but I cant' part with them as it feels like we've given up on the idea of improvement, and his brother won't let me part with them either as he's saved them for him.

Monday, January 3, 2011

Swiper earned the Sheriff Bandana

Today we did our session in 3 bits which was very unusual for us as we normally do the 2-3 hours in one go. Oatie let Swiper wear his Sheriff bandana today and snuggled with him on his bench. I don't know if Oatie previously overlooked this toy or maybe he wasn't strong enough as you have to have some core strength to push the spinning top down to make it work but today Oatie discovered it and loved it. It was one of his big brother's very first toys. Oatie played Wii Mario and build lego and watched his brother and sister skate. We didn't hit our 3 hours today, we got in 2:35 today. Oatie put his cuddly stuffies on his bed and only when it got to Swiper, he said Buzz Bench YES, (Buzz Bench is Oatie's ABR machine's name.) BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Blog Makeover - and Does "Swiper" the fox have CP?

Today I gave Oatie's blog a little, blogger makeover, rather than the snow background, there is now an ice background, I was going to take a photo of the ice of one of Oatie's brother or sisters ice-tracings and use that as the background.  My ice tracings are not textbook... (I'm still learning to skate) my one foot spin looks like a roller-coaster lol!  I like skating too, and I really enjoy our adult lessons, it's one hour a week, where Oatie's dad and I, (with our helmets and padding) learn something new and have some fun too.

Oatie played with his plush Swiper, and played role play with him and invented a scenario where Swiper was the Hero (from Dora the Explorer), yes it did involve his sister's Barbie car and the "people" that needed rescuing were also cars.  As, his Sister, the other day (after Oatie insisted on having Dora on his screen and the main TV for his WHOLE 3 hour bench session) came up with a huge story, defense and evidence on how Swiper could have cerebral palsy for a fox, and how, therefore he couldn't communicate his words, thoughts or feelings as well as Dora or boots, as what he says is very similar and limited to a few phrases like her brother Oatie, and how he would like to be a nice good fox, but he can't express himself verbally very well, so he would like to just play with Dora and boots and go on their adventures but as he "doesn't fit in" he gets excluded and never gets a chance to join in as before he does, it's always "Swiper no Swiping".  And on the odd occasion Swiper is allowed to join in the adventure like getting baby fox back to his mum, Swiper was the hero.  Oatie's sister also backed it up with further evidence on how Dora made her baby twin brother and sister LIFT her and boots up in the air in the episode "Super Babies", and how this was another example of Dora was further taking advantage of other people.  Well, anyway after the case was won by Oatie's sister, Oatie went into the playroom and found a mini soft squishy ball, and started to roll Swiper's chest and Oatie said "Swiper Bench YES!"...  since that day, Oatie has taken Swiper shopping in his cart, and taken him to bed and to me, it looks like he has kind of has taken Swiper under his wing.  Watch out world, Oatie's BIG sister is 5 and is one of Oatie's stongest Advocates, so if she has this much passion and spirit at 5...just watch and wait...

Happy New Year!  Love Oatie's Mum
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Related Posts Plugin for WordPress, Blogger...