I am so annoyed, so very annoyed!

Indirect discrimination against Disabled people!  I HATE IT!

Well I am really annoyed.  Like really.  One of our kids after school activities clubs, signed up for hosting an event which mine can't participate in (that's totally fine)but they wanted $500 cheque if you don't volunteer per child.  So ok $1000.  They never stipulated the hours required till it was time to fill out shifts.  So when they said I had to do 32 hours over a 4 day period, with a 7-5 and handicapped 3 year old I was like...... Oh OK.  So I diligently was one of the first to put my shifts down, and got up to 27-28 hours, maybe 30 as one was sketchy end time it ends when the jobs are done..., with the view of topping up should it be needed.  So all was hunky dory or so I thought.

Well today, Oatie and I had just got back from picking him up and my daughter had an entrance test to get into my elder son's school, and I went to check my email and came across the schedule.  Well apart from the fact that I said I couldn't do Saturday, and I picked Wed Evening, All day Thursday and All day Friday, they changed all the posts that I put my name for (quiet non shouting ones (I am a chatterbox so I do hope there is nothing sinister wrong with my voice as I do like to chat) but I can speak lots, just not shout/raise my voice.... so they changed my volunteer position to something I explicitly said I didn't want to do out right (I can't shout because of my throat, the lump is still there) so it would just be a disaster as how can I shout and call people if I can't Shout?  And then without asking me first, they put me on Saturday without my consent and then PUBLISHED and printed it, not like sorry, you HAVE to do Saturday... Nope... I accidentally clicked on Saturday and saw my name.

So they took away 8 of my 28 hours, so it looks like now they will claim they can cash my $1000 cheque... what's makes it worse was that I spent 3 hours contacting the Guides and Scouts in the area and my eldests school who do volunteering towards a youth award, and out of that I got one young lady who is doing 7 hours.  Which they wouldn't have even got the 7 hours if it wasn't for me.

Previously they said that child over 13 who volunteers adds to your hours say if you had an older child... now they say not!

Don't get me wrong, I have nothing against hard graft (Hard work) but it has to be fair.  How can you take peoples hours away when you were first in line and then give you a day you didn't consent to?

My husband is going to be working full time and being Super dad collecting and picking up all 3 kids while I'm doing my "32" hours...

The day I didn't consent to?  Here's the thing... having a "Disabled" child...., who wants to look after them?  (other than you of course) Your Extended Family... NO!  Hey do you think someone wants a play date with them? haaaa!  NO, Oatie is a nice gentle polite soul, a really loving guy, but no one wants a playdate with him EVER!  Finding a babysitter... NO! They know I have a disabled child, I wasn't asking for special favours, I had put all but 4 hours on the sheets in times where my husband could be Super dad and I could find an intravenous drip of caffeine...and (spent 3hours finding other volunteers (not counted in the 28-30hours) but that doesn't count either).  (So I can't find anyone to look after him for the day I didn't consent to, as I tried to do that to do a sponsored run to raise money for cancer a few weeks back,)...So what do they expect me to do, stick Oatie on the pavement/side walk? When were they going to tell me they put me down for a day I was never going to be there for originally?

My husband re-arranged his work, appointments everything so we could do the days that we put down, it was one grid chart not like there was dupes...   And what was best for Oatie, we (his parents decided we'd take the brunt of the exhaustion) and let his routine be his routine and cause him the least amount of upset, he's doing so well, he doesn't need to be stressed and panicked and feel trapped being strapped in a claustrophobic environment)

The day I didn't consent to, I have been put on a "Walking about post", so how am I meant to "walk" with someone who can't! in a highly busy area where there are STEPS!  His stroller wouldn't be an option and he would just SCREAM.  If it was a stationery post where he could watch a DVD on his player or something I might be able to do it but how fair is it to strap a 3.5 year old in a stroller for 4 hours for something he's going to HATE!  I think that's cruel!  (hence I didn't want to do Saturday) and was prepared to do a 12 hour shift both days plus the Wed's night set up.

It has really upset me, as if it's not enough to deal with the prejudices against less physically able people, I thought that was rather insensitive, lets RUB your face in it, and give you a walking position which isn't even fathomable and cruel to even suggest, and then say sorry for the 'hardship', caused to anyone's who's shifts we've changed......, and take and change your hours that you put down first, first come first served, take them away, make you feel bad for having a child that no one wants to play with because he can't run, and then claim they will bank your cheque!  Just makes me feel sick!

Wowwzer's Monday

Well, I think you know I'm slightly obsessive about time management, (I was a Executive PA), well I really really do like to squeeze as much in a day as possible. There are a multitude of reasons, one of which is really personal, was my aunt, who my mum nicked-named "Joan Collins", well my mum and my dad's sister had a spirited but healthy rivalry, and looking back it was rather surreal, but does make me smile, I think my mum and my aunt quite enjoyed the banter. Well the sad bit was that while my Aunt was what most people call their prime in her 40's, (although I think being in your 60's is your prime!) she had a stroke and had a combination of muscle wasting diseases and from being a feisty spirited, very handicraft type person to not being able to move a muscle apart from a blink. I still have the toy seal she made me when I was 7, and what occasionally chokes me is that after her first stroke and she realised that her health would deteriorate, she made pictures and hung them around her house, and wrote notes on the back for whom they were to go to, but never told a soul, after she died, her husband found them, they hung there for years. I don't know why I'm telling you this, I suppose it's just gone past her death anniversary, and I love sewing, a friend today was admiring the skating dress I made for my daughter, and she, my aunt loved sewing, but we never got to sew together.

Well, after seeing my aunt when I was 17, she could just about chat then, and we enjoyed watching "pretty woman" together, I vowed never to 'waste' a day again. Waste meaning Take for Granted. Hence my days are actioned packed.

Well to further streamline my schedule, I found this app, it's actually quite useless, but I kind of really needed it(for me), I think in pictures and well your day is a pie chart, and you put your daily schedules in and you can visualise you day (as you can see quite useless) but for me, I actually like it. I think the idea is that you balance your work, rest and play, and I suppose seeing the segments of each it nice. This evening when "Freetime" went ding on my phone I was like, ohhh that's nice!

Well today I had a great day, I swam 2k, ran 2 miles, I straightened my hair and painted my nails, did 2:55 of Bench (ABR), made the lunches for tomorrow, took the kids skating and made dinner, a banana cake, well it was just nice.... not too rushy but just nice.

Oatie will be returning to School tomorrow, he didn't make it today as each time he goes in he picks up another cold, and I was beginning to wonder if it was the floor... so my husband was hedging asking as diplomatically as he could when, so we found out today that the floor hasn't been mopped since September-October last year, the cleaner they just sacked said he never knew he had to clean in the preschool room ewwewewewe! 

Oatie walking to put the fence back in Happyland today

Quiet Saturday's are nice...

My oven is busy making all these dishes.

Today we had a quiet day at home.   It wasn't as quiet as I thought, as I did a bit of spring cleaning, I know I've mentioned my oven a few times, but I really do love it, how many ovens can you clean while your cooking?  My oven was grilling sausages, had a casserole, frying onions, a huge rice pudding, and cooking rice and had the contents of my quiche filling, oh and making me a cup of tea too!  (Yes that is a giant sized mug, it's my ABR mug).  I can make a nice cup of tea it stays hot and is great especially for $0.50cents!

We took today off from ABR, and Oatie played with his less sturdier cart, this morning he stood up and went to walk with it and lost his balance and fell on his bottom, he was about to crawl away and cry, when I told him that he was able to play with it, but he couldn't lean on it as it won't take his weight,and he'd need to put a few of his cuddlies/stuffies back inside the cart to help, so he said "OK Mama" and stood up in open space and had another go.

What's ironic is that having the combination of "able" and less "able" children in our house, at times, I'm not sure who's the less able one, as Oatie rarely spills anything, gets any food around his mouth, where as my 7 year old.....!  So it's quite funny, even though they have differences physically to Oatie, they all 'struggle' with similar goals just in different ways,  my older two are trying to perfect their "sweet-spot" on their figure skates whereas Oatie is trying to find his "Sweet-spot" on his feet too.  When he stood up, with his cart after he fell, he rocked back on his feet and forward, looked like he found his balance (same look as my older son on his hockey skates last week) and then was off...  It's called his "speed cart" and it's full of all his stuffies/cuddlies.

Meanwhile, Crystal was hunting the sausages...

I can smell Sausages...

A change... a good change but a change...

I'm perplexed, doesn't happen often but, I'm had a few moments of actually looking, not believing my eyes and looking again! I suppose it was subtle, but just a good few 'subtles' today which was eyebrow raising for me.


If I could ever have multiple me's like Multiplicity (with Michael Keaton), I would kind of love. The rest of the world wouldn't as there would never be any peace for a start and if they could chat half as much as I can... then it would be "God save the world", as I am a Gemini too, but 50-50 extrovert-Introvert straight down the line.

Well I have decided what "jobs" they would all have. I'm sure you who read my blog can guess what, one for ABR, one for running the house... But ultimately I don't think I could as they would be like Slaves and I just couldn't stomach that. I wouldn't mind employing someone to help, but they would have to treated "tiptop" for sure.

The reason I think of Multiplicity.... is the balance, my plate spinning goes awry at times, I hear a few chinks of of Stoneware hitting the floor. I would say China, but I only like my cup of tea in China. Good old Stoneware is so durable.

My "old life" was predictabley boringly balanced, too balanced, I like running things to perfection, (OK i'll admit it) it was a tad dull,... there is never a dull moment now! Be careful what you wish for!!!

Today my younger two had teacher training days, (I can hear you shouting WHAT ANOTHER ONE!!!) like I said between Oatie picking up every illness at school... and the Teacher Training days of 3 different school calendars... I have job some days working out who is meant to be in the car and who isn't!

Well, I decided to take my daughter to the public figure skate, not because she was lacking in ice time but just to spend some one on one with her. She skated this evening for another 1.5 hours but we went for a giggle together, we held hands, she looked at my 3 turns, and we really enjoyed it too. The trade off was Oaties ABR so I did manage 1 hour and I thought one hour is better than no hours and well it has a knock on to the dishwasher not being run and then adds a few chinks to my well oiled machine. Oatie is still having everyday 10-14 hours of ABR Machine a night. I suppose I wish I could be there for everyone whenever they need me (highly unrealistic) but it was what my "old life" before his diagnosis was like and I did really enjoy the freedom of the past, I don't want it to sound bad as I love Oatie just as much as my other two, and in some ways he's the least trouble as he always does his best and listens most of the time and doesn't have strops. What I mean is, I liked being able to "waste an afternoon chatting to a friend about nothing", or not multitasking EVERYTHING, all the time, and as long as the basics were done, laundry, dinner sorted, school run and clean kids, didn't really have a care in the world, I suppose the simplicity. Hence the thought of multiplicity.

I thought this was going to be a short post! Well I wished I could roll (ABR) Oatie more, not because anyone is making me do it, or out of guilt as I don't feel guilty about what happened to him. But on days like today, for a fleeting moment I do wish I got our "usual" hours in, especially when you see him progressing.

Here's why I was gobsmacked...today, he spontaneously asked for food, when offered lunch he said no, later!, and then told me which pudding he'd like, when I said it wasn't available (he hmmmmmmed and then said something else), he stoutly was opinionated, used words I had never heard him use before and, pushed his other cart that he couldn't hold even if I was holding it he'd fall over (I felt bad for buying it as it seemed cruel that he had this toy and couldn't use it, so I hid it in a corner behind the door in the playroom for the past 2 years)..., today he got it out, did squats with it and pushed it along and I was like, OMG!!!! and said to my husband "did you see that?" he looked up and just said yes (automatically) thinking Oatie was with his usual more sturdier cart, when he looked up again and went OH! He found two stuffies from this cart, decided they were friends, and gave them names and told me what they liked!?!?!? (OMG!) Watching Skating this evening he sat on the bench watching his DVD holding his dad's hand (usually he'll stand up) and he walked to get his bedtime water and opened the underbed-drawer to get his ABR machine out, and well he was just "different" like a good change had happened again, nothing major, but all the little bits really added up to "WOW" for me, and that's why I couldn't believe my eyes.

Well it's our Friday night Date Nite, our Takeout/Takeaway is arriving soon, so I'll leave you in peace... for now! Hope you all have a great weekend too.


Love Oatie's Mum (Mel xxx)

Peppermint Creams

Today Oatie had a teachers training day. So my daughter and I made some peppermint creams together as a practice run for Scouts next week. Well they are pure sugar with egg-whites, so rather sweet...

We did 1.5 hours of ABR purely as I couldn't focus with all that sugar buzzing around. So this evening at scouts I inflicted all the other scouters with them.

The Wrong Trousers - I hope I'm not Wallace, I have do have a Gromit & Shaun!

 Oatie at Preschool using Scissors...  I was very impressed, and taken back, I didn't realise he could use scissors like that!

Oatie using Scissors today...

The Wrong Trousers?

I love GROMIT xxx

Wallace And Gromit Graphics &; Wallace And Gromit Pictures";

I hope I am NOT Wallace, but I had/have to be creative with Oatie's Trousers/Pants... as "normal" ones don't last at all.

Today Oatie's trouser prototype "1" bit the dust. It served well it lasted 9 months well I did make a few pairs so that's not bad going.

Trackpants, I cut and resewn to be CP Friendly for Oatie

Until now, I got his existing pants and rehashed them. Like I'd cut the seams off, and pretty much remake them adding the hard wearing material in the front. I learned that it was best to bind the edge of the patches before sewing them to the hard wearing fabric. This time, I've decided to make them up from scratch. It's more work than making them up from scratch. I'm not doing ribbed cuffs as I'd like to have a hem for growing room. In principle I like them, my daughter chose the blue fabric, I might buy some black fabric to mix it up.

So "normal pants/trousers" are wrong for Oatie for a brand-new pair of jogging bottoms/tracksuit trousers, Oatie can wear the knees through in 3 days. I could also use a pair of those trousers featured in Wallace and Gromit, it would be perfect for getting Oatie around.  

I'll be making him some new ones very soon, which reminds me to prewash the fabric, so I had better go and put a wash on.

If you click on the photo you can see the black patches on the knee- thigh, the ankle cuffed ones ride up like that.

Today we did 2.5 hours of Manual ABR

Pizza car at the gas bar

Today was -34oC and with the wind chill it felt like -40oC.  If you weren't wearing gloves after about 20 seconds you hands were burning....  OUCH!  I don't normally mind our winters but this one is very "special" and I am sure I will treasure it in my heart... NOT!

Today we got 2:30 of manual ABR, which is more than usual on a Tuesday.  I didn't swim and Oatie didn't make school either.  But I did go to the Flag Ceremony.  It was really sweet, and for me looking into the Francophone community, it was nice that they wanted to be fully integrated into Alberta.  I do love O Canada in French, it sounds lovely!

My older two had dance, and my "Michael Jacksons" Thriller jacket arrived for recital, he was so excited... fortunately his figure skating pants are now above his ankle bones so they should be perfect for the pants to go with the Thriller Jackets maybe a minor mod to them.  My daughter is one of his dancers... in sparkling fuschia pink two piece they look gorgeous.


Today Oatie, found a lego ladder from on of the lego dumpster trucks, added a block to make it a "bridge" and then got Pizza Car and took him on the bridge which was Pizza car at the Gas Bar.  We do love his games, he's so inventive and it's super cute.  

 

I've contacted the Mayor

Today was a special Flag Ceremony at my daughters and Oatie's School... and guess who sat next to me,... none only other than the Town Mayor (we're not officially in the town) but we're in the sprawl in the countryside so we're like honorary town members.

So whilst I was emailing him his photos, I asked if he could do something to improve disabled peoples access/rights in and around the town.  He really is a nice guy, probably the nicest politician I've met, so we shall see.  What I like about him is that he really does seem to care about what his role is and I have no idea how good his French is, but he was really making a huge effort and it was nice.

I even sent him a photo of Oatie Buggy skating from Sunday so I'm hoping that his cute smile might win him over.

Oatie and I'll be back later.