Oatie's making his own disco

Oatie's Making his own NYE party, it was the first time he ever played the drum, he went and found it and found two beaters and just started to tap out a rhythm! 

New Years Eve

Well mum doesn't believe in New Years Resolutions well, for this main reason why wait till a particular time of year to make a positive change, any day in the year will do just fine.

Here we're playing a honeybee game and I'm counting the bees in French.

Ok I'm wearing my Sheriff outfit, someone got to see that the rules are followed! Sheriff Oatie !

I wonder if any of the police force have cerebral palsy?

Well, Happy New Year!

Love

Oatie xxx

Delayed bench

Oatie asked so nicely that we couldn't resist building one truck of his Lego set it was a team effort.

Snowy Wednesday...

Yesterday Oatie's dad said how when the snow on our shed gets to one inch it will snow, and well it did!  I think our shed has to be kept secret or the weather people might be out of work as his theory has been proven over 2.5 years.... YES!!! We have been in our new country for 2.5 years yesterday.... how exciting, I think we're going to make a special meal and pudding to celebrate tonight.

Oatie and his brother had a nice bath together, his brother asked if he could wash him and Oatie confessed his brother only washed his tummy!  When Oatie's brother is at home, Oatie when not on his bench is his constant shadow. and being 4 years apart sometimes has his challenges for both boys.  Oatie's brother likes play in the bath with Oatie as it's a place where Oatie's impairment isn't paramount, so they can again just play and be kids with out all the physical limitations.

Oatie and I are about to commence on our ABR Bench session but the boys are hanging up Oatie's brother's clothes and I can hear Oatie, say Tidy up now in a menacing way to his brother and then laughing!

This holiday Oatie's brother and sister have decided to see if they can teach Oatie to read, he can pick out numbers and letters and occasionally without any pictorial cue knows what something says... which as you can't ask him and get a straight answer you wonder if he read it or if it was by chance.

One of my pet hates, is when people talk about Oatie or ask a question about him to ME instead of him,  right in front of him while he's awake and it would be an answer a child of that age would answer for themselves.  I just say, why don't you ask him yourself?I suppose the annoying bit is another time they have a question they do the whole bypass thing, like he's not a person and I really don't like that, OK his speech isn't a coherent as an average person, but he isn't an average person, I think he's extraordinarily intelligent but just trapped, and just as gifted as his brother or sister or if not more as he tries sooooo much harder than they do. 

The brotherly bond is deteriorating into a battle of wills and even though Oatie isn't articulating as well as his brother he's holding his own in their verbal argument, even if it's no no no no no which is annoying his brother to bits as he can't get a word in edge-ways and as he does Oatie laughs and goes back to no no no no....  I think it's time for Bench!

2:35 and it was great apart from...

Ha ha no it's not post 2:41! Today we did a 2:35 of Manual ABR, we watched Barbies Fashion Fairytale which Oaties sister got for Christmas. Oatie put me through Super Babies Dora the Explorer. I don't mind Super Spies Dora as Swiper is the main character. I like watching the TV show "Modern Family" and I loved the bit when Cam said if he watched Dora one more time he would SNAP. Whenever Oatie requests Dora, that always makes me chuckle.  We also did a quick whirl in Toys R Us, and Oatie picked out his very first non Duplo lego, yes.... it's is a plane and car and trailer set, which is his favourite type of toy.  I'm hoping that it won't frustrate him, like Oatie can't do it on his own, but hopefully he'll accept help from one of us... it was very sweet, he held the box in the stroller, at Ikea he gave it a kiss and put it in his car seat, on the way home he hugged it and at night he put it to bed the box still sealed on his car garage.  Today we bought Oatie's brother and sister REAL plates and glasses. They are really excited.... Mummy treated the family to Creationary, which is the lego version of pictionary.  Well Oatie can't use a pencil like his brother or sister can at that age but we thought he's quite apt a lego so that might be a game that we can play as a family.

Boxing Day

My hot wheels toy, its a toy I can enjoy, I put the car in the launcher and hit the top and off it goes.

Christmas Day

Today no bench apart from my Machine, here I'm playing with a toy from Santa with my big brother. I was excellent. I/we could play as equals no able/less able issue!

No bench but...

Ok we had the unhealthiest day ever, well we did have a wholesome breakfast followed by gingerbread house for Lunch, we did have cheese on toast for snack followed by a stack of 14 inch French crepes with yummy toppings. It was the first time Oatie ate crepes like that as the texture used to make him gag. We made some homemade mince pies for Santa. Tomorrow homemade English scones with Jam for breakfast. Followed by a traditional Christmas Dinner and Harrods Christmas Pud. Merry Christmas! Love Oatie xxx

Christmas Eve yummy

It's Christmas Eve and I'm getting things ready for tomorrow, hopefully I'll have time for bench.

Gingerbread house still in one piece

Ohhh that gingerbread house is staring at me! I think we're eating it tomorrow Oatie's brother make a banana bread all by himself, (apart from putting and taking out of the oven) Today we did 2:55 manual ABR ! We watched Dora and Shrek2. This afternoon Oat's dad put up 3 sets of curtains, our Dining room, oat's and his sisters room, the kids have blackout lining which really gives you lovely quality of sleep. It's taken us two years to get around to putting them up lol! I'm excited about the dining room, it's really made the room cosy, for our 3rd Christmas in North America. The little ones are about to watch the snowman, followed by bubble baths and into bed.

I have a willing volunteer, his brother said when he's old enough he'd like to help mom out with rolling Oatie, ahhh.

The Gingerbread is still standing

Today we're about to start our Manual ABR, Oatie, goes to the DVD rack and picks his bench entertainment.  The Gingerbread house is still standing, the problem is that it is YUMMY and addictive!  as Oatie's brother and I counted out our whole family in gingerbread people, make some trees and an angel, stepping stones etc, after they were baked but before the house assembly, we kind of had a few extra gingerbread people which we shared out and ate, unfortunately Oatie ate Oatie, Oatie ended up in the eating pile, so Oatie became a teddy bear.  Well!  we had to make sure sure the gingerbread was OK after all it was a new recipe.  We're switching to N.American recipes as our European ones don't as well here, the ingredients are different, different altitude and humidity, which is nice as we're applying our knowledge to a new experience or method... Where am I going with this, well baking a cake or making bread or cookies is a scientific experiment each and every time, and it could come out different each time you make it just to one uncontrollable or controllable variable, but it still tastes ok or sometimes better.  ABR to me is science, logical, sensible science, what I also like about it, is that you feel like you are actually doing SOMETHING to help your child, rather than being passive as just waiting for the "miracle".  The thing is, as the ABR administrator so to speak, sometimes you as a person have leg aches, or arm aches or don't feel 100%, but the thing that always rings clear (I remember the trainers saying about a 3rd party rolling your child at school, may not be as good as perfect technique ABR, but better than not at all) to me is that even if your technique isn't on par that day, it's better than not doing ABR at all, a bit like your cake.

Well my top tips for rolling for me, are, We inherited a lovely thick carpet and thick underlay in our den, which our bench sits on, I'm by a huge window, so I get beautiful scenery of our yard we're on an acreage, I have my i phone with ear buds so when you've seen Dora for the millionth time.... you can tune it out and.... I have my Sketcher shoes, they are the banana shaped soles on them, and so amazing for rolling in.  We do 90% of our ABR standing up, or where possible, mainly as a result of a previous back injury.  Keeping fit, I find the fitter I become the easier it is me for our Daily ABR marathon.

I think we might take Christmas day off, for sure, but Oatie misses his bench.  He's still having 10-14 hours at night on his machine too.

Here's our house

We did over 2:35 hours of ABR today it was an awesome day on the bench, here is the homemade gingerbread house, is by the front door, mummy is holding my hand. Oatie is in the green

Gingerbread house Yummy!

This morning mum baked the bits of a gingerbread house, 2 hours later the house still smells yummy. We're about to start our bench in a minute, a quick advent calendar chocolate and we're off...

Yes, Oatie wanted a dinosaur outside the house when we've built it, with trees and our family in gingerbread people

I have a post in my drafts that I'm not brave enough to publish... yet!

Well the onslaught of the ski shop spilled in to, today.... I didn't realise how much it affected me this time or Oatie, which has made me wonder whether to shield him from such events or not, or then is it pretending that he isn't really physically less able?

It affected me so much, that today we had the worst manual bench session since March, Poor Oatie was full of phlegm and he didn't want to be there, he also I realised today enjoyed his new found freedom of Chronic pneumonial Bronchitis, he got to play all day and he as was I enjoying having some downtime.... and not be attached to a bench for that time.  On the upside it's the Christmas holidays so without the school run dashes etc, he and I both get some time to do other things rather than being as I call it a pingpong.

The bit you are "missing" was this whole bit about being on your own, but with emotion, how the only people who really have any time for you, are for example your ABR friends, people who themselves have the least amount to time to spare, have the most time to give.  Just a one-liner is all it takes and it feels like the biggest bested hug and I'm a hugger!  It also adds the contrast that these people have the least amount of time and the people with far more time are not there for you.  Your support network if it's like ours fits on one hand, the empty promises give the enticement of support, but is like stepping on a cobweb, you think it's strong as a web, but it's as strong as one strand and it's not really there.  You have the "brushers" under carpet who think, Oatie will be CURED, and he's just experiencing a life blip, like club foot and it will all just go away with time and he'll be just as able as you or I and on the really tough days, I just have to put on the brave face as, you can't be honest and say how it is as then you get accused of being self-centered and Yes I know there are millions of people out in the world suffering, dying of terminal disease, victims of war and famine.... and so many more people worse off than Oatie or I.  But at the end of the day, I'm just a ordinary person, I don't profess to be anything else than that, I have feelings like Oatie and I hurt too.  My poor Cat has had so many tears on her coat through out her life, she's 11, she's the one I always turn too, even though it severely messes up her fur, she's always willing to sacrifice it.  Oh dear, it's turning emotional again...

Well I had this whole bit about parental sacrifice how you'd chop or donate a bit of you, to spare your child, but that (I could be the only person in the whole world who feels this) feel that that is the easy option, sacrificing time on an ongoing basis for me is harder.....

OK, I have just chopped off the latter part of this post and saved that in my drafts too, as I'm not sure if I'm brave enough to publish that part either it ended up being a less emotional version of post "2:41", what if my few followers disappear too as a result?  It was the my version/feelings of a snapshot "word flow chart" of life with a Cerebral Palsy special person.... do I post it or not.... the hesitation is because it's the truth, well, as I see it.... and it's not what "people" want to hear....  OK going to find my cat....

Tears in the ski shop

Today we took the kids to the ski shop. Our goal is to take Oatie skiing when he's five as he'll need adaptive gear which is very expensive. It dawned on me that we'd need to have our older two be able to stop and turn safely before Oaties dad or I ski with Oatie. I'm glad we're good skiers so when the time comes that bit is taped. Anyway the poor love cried so much in the ski shop. Oaties helmet. Oaties Skis oatie's boots. As usual you got the looks of Oatie being a spoilt brat where he was actually just mourning with tears for his handicap which I know he HATES, it's like I knew what he'd ask Santa for or his birthday wish, it wouldn't be a toy game or gadget, it would to be as able as his brother and sister.

We did it

We're back on bench. Today we did 1:10 which was good for our first manual session. I was out of bench shape lol! So tomorrow I'm hoping to do a full session.

Oatie's bouncing back!

Oatie is bouncing back! ABR support is really great, our Area resident trainer is on annual leave so another branch trainer emailed with some exercises to do get him through his ill period, but he was so so so ill I just couldn't do anything apart from put his machine on, but today he looked like he could be up for his manual ABR. The only thing is, is that mummy got used to having more time on her hands (from not rollling him for hours each day) to play with the kids and have a more relaxing time at home life, I even painted my nails and not feeling like a ping pong ball. But... Going to push the selfishness away and get back on track, Oatie needs me and my other two are so lovely and unjealous they don't mind me rolling him for hours and actually encourage our bench hours, they can see how much ABR helps him.

Phew! That was close...

I have Bronchitis, and the doctor couldn't believe it was my very first antibiotic since I was born!  The Dr said that if it had been left and with the CP, it was almost certain it would have developed into pneumonia, mum and dad have pneumonia radar fortunately!

I'm on my way home, it's a 30min wait at the pharmacy for my prescription so dad and I are buying some things to go in our Christmas Crackers that we make, at least I'll get to go to the Cinema on Saturday after all, I've been looking forward to it all week. and... I'll get my manual ABR back when i can breathe better, I've really missed it with my brothers school skating and my bout of illness.

Love Oatie

I'm at urgent care

Dads taken me to urgent care, I remind mum and dad of Luke he had a full appetite and happy when he had pneumonia, so let's hope it's nothing!! So dads taken me to get checked out, I was so excited for the expedition, I packed some toy cars, taken my Dora DVD to occupy the wait, meanwhile my brother was crying in bed thinking I'm going to die and my sister declared she couldn't live without me, for a little brother who enjoys terrorising my siblings on an ongoing basis, they sure do love me, by now mum will have the sewing machine out to take her mind off worrying.

The Preschool Plague

Being handicapped adds a new dimension to the preschool plague, maybe as my hands are on the floor lots or maybe just bad luck. I've been ill since just after Halloween with 3 back to back illnesses, shook off the first, shook off croup and now I have something else. My mum and dad have kept me home when I was really ill on the ill ill days where as the fad seems to be take ill kids to school with fevers, who by bad luck cough or sneeze right in my face and voila my next illness... I missed school again today, so I might be taking a whirl to urgent care just to be on the safe side.

One more day of reduced bench hours

Today, we did  35 minutes of Manual ABR, one more day of reduced hours...  Today we played "What's that" lots, and Oatie turned it around so he would want to be teaching me the names of things, it was very cute... he also does an Eddie Murphy-ism, when he says something funny and ends it with a Yes, and it's hilarious.  Oatie's standing was super again today and his core seems to be so much stronger.  Oaties dad noticed that the leg with the cramp is lessening and, when asked to flex his foot it went straight up rather that the hesitation.

Today I copied the sign gestures from the TV

Today we didn't get to do bench as I was really tired and we were going to a choral concert at my brothers school.

This evening I stood in front of the TV next to my brother and stood unaided and... Copied the sign gestures while singing/speaking the words. Mum thought it was amazing.

Me at the concert

My first day back at school

Yesterday, I stood up in open space un-aided, I haven't done that since the Summer.  I wanted to go and stroke Crystal my brothers cat.  Mum said I stood up so much easier and... I didn't wobble, while I took steps towards Crystal I was chatting away.... something I don't usually do as I used to have to concentrate on every single step and my balance and yesterday it was like I didn't have to think about walking or taking steps, I just DID.

Well.... today was my first day back at preschool.... and my teacher shouted at my mum, regard..... regard... regard, so my mum peeked around the door and saw me with my lunch kit in my hand... chatting away walking unaided out of the classroom door.

I haven't improved my distance, but my core stability, and I am so much more sturdier and I could chat, hold a weighed bag and walk.... A very close supportive family friend whom I call my uncle, who saw me walk out of the class, was so happy and proud he gave me a huge kiss on my head and told me he was so proud, which made my day!

3 more days of school skating and I get my manual ABR back.... I've been bereft without it... at least I get my buzz bench (Machine ABR), but tomorrow I should get a few hours of manual in.

The weekend

Here I am, super cheerer! For my brother and sister competing this weekend. .. My brother skating...

I can chat, while doing head gesture and take some steps

Today mum was amazed I havent stood up without a prop since the Summer! Today I stood up in open space and walked across the living room, while chatting non stop I was walking with a more normal gait and it turned on the spot and looked around while doing so! Mum was sad as she only got 30 mins of manual today, as my big bro has school skating in town this week. Here is a photo from this weekends skating comp, I love watching the competitions, I shout out my brother and sisters names to cheer them on.

I'm better...

I am so much better today. I'm laughing and giggling again, so mum is so happy to have her comic relief back...

I'm laughing the jokes from Dora.

We did over 12 hours of machine and mums done half way on my bench...

Is it almost Friday already....

Well.... I've been off school most of the week, my mum after having the flu, then got a form of my croup virus... as she has now totally lost her voice... my mum LOVES to talk.... so she says that she gets to experience a fraction of my frustration when this happens to her... as she feels so pent up not being able to articulate....but having lots that she wants to say....

We have been doing around 12 hours of Bench a night... and.... mum even thought my brother has school skating (It's just for 2 weeks) been able to get 2-3 hours of ABR in each day... Dad has helped by taking my brother/sister skating or helping mum organise things for the next day...

Today I got 3 hours in.... hooray!!!