hmmmmmmmmm

This is our local area! We are fine, we live on a very steep hill....

Bureaucratic red tape...

Today Oatie had a visit from the lovely "speech pathologist", I've always found that term different as pathology to me usually means the study of diseases and causes etc. Oatie doesn't have a disease... oh well!

Well, anyway she's very nice person, very approachable and totally into her job which is just so nice to see and it's actually genuine too, which is just fabulous.

I don't know if you remember my post about A government agency that does nothing... well this lady contacted them, to find out the outcome, as she was the lady who referred us, and guess what??? she's left two messages and they haven't returned her call in two weeks! The funniest bit, was when they said that they didn't endorse Apple products, this lady actually went to a seminar where one of this "team" stood up and gave 2 different demonstrations on apple products...

Well back to Oatie, she was amazed at the progress that he's made, from joining in in the class routine, to the whole reduction in the aggression in the room since the bullying stopped, his recital of the alphabet and his speech and well everything really including his walking.

I was also told how due to red tape and funding cuts, it was why we haven't seen her for ages, as her budget was already used up... but apart from having an aide (who is magic by the way, this man who's Oatie's aid is just first class, through and through and I have the highest respect for this man, he is just so nice to Oatie, and they have a special bond and everything he does with Oatie is fun, he make learning fun). They haven't really done anything else to help with his speech or his OT at school. Luckily his teachers/aide and my husband and I are all working as a team for Oatie which ultimately is going to be us to do that in the first place, I suppose I would have liked to see some "strategy" or plan on making sure that when he gets to kindergarten age, he'll have the skills to be in a mainstream classroom, which is still 18 months off, but the plan I think needs to be in place now. So I go back to the drawing board, speak to more people find out the low down and go from there, which usually starts at the Swimming pool funny enough....

So this nice lady, did bring her itouch and her ipad to see which worked better for Oatie and we both decided the ipad is the best device for him, so just waiting till Friday to place our order for his Ipad. He calls it his "Magic Book". He actually asked when could he use the magic book again, it helps!

Well I'm going for a nice cup of tea and chocolate cake.

Love Oatie's Mum
xxxxxxxxxxxxxxxxxx

Mallet - Hammer game at a fair...

Stuff the term "chicken and egg", I'm going for whac a mole!

whac-a-mole

Oatie and the review meetings!

Well My own life feels like I am a plate spinner... lol!

And then Oaties' life feels like Whac-a-mole...

You have the diagnosis... and then there is the forward and the backwards steps and then you press here and this pops up so you hammer that and then elsewhere pops up... and well it is just "Whac-a-mole".

I didn't even know what this was called in North America, I have an aliens version of it from the UK. I just remember loving playing it at fairs when I was a kid...

For example... Oatie was getting beautiful structure from his ABR therapy... but then became agoraphobic as we wheeled him everywhere so he did stay and not undo the hours of work... (by him mangling his body further).

However, with the Agoraphobia came missing out on his childhood of exploration as he couldn't go and see stuff for himself and had us wheel him where we wanted to go rather than his older sibs who would tug your hand to go and look at something.

So then came the walker,...the walker made me cry.... on the one hand, he started to LIVE and be a person rather than a kid with CP. He had choice and made decisions where to go and what to look at... HOWEVER (what made me cry) was how he is mangling his body in the walker...

So then came the exploration of the service dog... multi fold of the companionship, love, and balance aid from the dog (we are waiting for the dog it might be another year until we get the dog) but that will be way better than the walker!

With the walker, he matured enough to go to Kindergarten where he has the best friends in the class that anyone could ask for... everyone loves him in the class and he has genuine friendships... genuine-genuine... (not manufactured by parents).

So this year, he's done amazingly, he has closed a 2 year gap on his speech to one year... which is brilliant! (partly from him using the walker as he's been able to walk where his peers do and be involved in every aspect of the class too).

So today we have his "where to next... meeting". The speech lady on the phone said that she is happy for him to go to g1... but then at the meeting today they were wondering whether him repeating K all over again would be a good idea....

Both Oaties dad and I were like no! (the K teacher is actually the nicest teacher in the entire school and she is brilliant) so nothing against anything.

I said, that if it was the preschool class that he was in, then maybe (to get away from them would be worth it)... but he actually has a "family"in his class, they play and interact and LOVE him, and that to me is priceless... totally priceless.... you can have extra maths lessons and language lessons, but you can't buy genuine friendship! To us, that network of friends that he has around him at the moment are part of his support network! For him to see his old friends go up a year and him start all over again with building friendships would crush him. Also a lot of his current classes older siblings are in his siblings classes so it adds even more strength to his network... as their big brother or sisters are friends with his brother and sister.

Oatie as we know is very bright... and by holding him back would really kick his confidence... (the school saw a huge improvement in him this year and didn't want him to find grade 1 too hard), my point was at some point he will have to leave kindergarten and my eldest ended up repeating Kindergarten twice (because we moved country) and it switched him off from learning for years.... in the end I stuck him in pure French, (he could only speak English) in Grade 4... and for the first time ever Oatie's big brother has had to work. (his big brother gets like 100% in his PAT) tests.

So I said, if he didn't leave K, and just stayed there, then what happens next year and the year after and the year after... Sometimes you need to release the bird and let them soar! Oatie has me, his dad and his older two sibs to help him as well with his school work.

So we made the decision to let him leap to Grade 1 with the rest of his class. It will mean that he will have to do full days at school as that was their condition. So I agreed thinking that we might just re-arrange Oatie's day to fit in his ABR. But I would like their support back to get him to the swimming pool which is 400m from the school if that a few times a week and get him in the adaptive riding programme too.

I said that if a few times a week he could swim at lunch, it will get rid of the recess fatigue of being in his walker, it's relaxing for him, he gets CV workout too and I found it realigns his focus to learning.

With Oatie, Skiing, riding, swimming and skating, it will also help him to mature up too.

So, now I need to try and work everyones schedules out, so I can schedule in his ABR and full time school now for September!

So hence it's like Whac-a-mole, you push here and then that area of his life pops out and so you push that back in and well... that with the plate spinning....

stupid really...

I don't know why i expected any different... we went for Oatie's annual visit to the childrens' hospital and well even though we are lucky as he's an openminded consultant and keeps the door open for adaptive equipment and a point of call....

He went on about how Oatie will end up wheelchair bound without surgery and all this other usual medical stuff.... he said that he'd end up there he's seen it time and time again... (afterwards now I've calmed a little... It thought his only empirical data is surgery cases) so that consoled me a little that with surgery they've ended up in a wheelchair...

What' has caused Oatie to regress a bit and get "worse" is the flipping walker, but if you look back at my blog to the dilemma of the walker, Oatie was becoming exceptionally agoraphobic being in his chair.

The consultant said that Oatie will reach a stage where the wheelchair will take over over him choosing to walk and negative spiral that way.

We've minimised the walkers us to school only and at social gatherings... when he walks on his own he's alright...

AND... I haven't rolled him in one year now with his ABR... he gets is bench each night except when he's ill.... and I need to roll him.

I'm hoping that by rolling him he will get back to where he was and carry on his improvement.

I don't know why i came out flat from that, what was I thinking!!!! what was I expecting...!!! Silly ME! How could it have been different or better... (we are lucky he isn't an arrogant A@@e!

I suppose it was the guilt trip of not doing the surgery or the other stuff....

What I do know... maybe it was the kick up the butt that I needed to get rolling with Oatie again! maybe it's just what I need!

Oatie had a brilliant weekend

We all went to the kids BFF's house on Saturday and Oatie rode a horse for the very first time. It was a brilliant day!

My eldest turned 10! My baby tried her first roast and loved it...

Oatie climbed up a ladder and managed to go down their slide himself....

All in all it was a brilliant weekend!

Have you ever encountered a friend who then reveals their true colours as a bully? as an ADULT lol

No the title is exact... yes, I have a "friend" that status is now in quotes, as in my mind it's in dispute!


URGH! people can really SUCK!

Oatie is great, in a few weeks he's going for his annual assessment at the hospital.

We are sad to miss the upcoming ABR traning... but C'est la vie!  next time :)

One month on Paleo... and I've dropped 18lbs yay

One month on the paleo lifestyle and I've dropped 18lbs!  Still have 40lbs to go but this is without even trying!!!

It's awesome and I have got my short term memory back, and I can follow a recipe again and I have the energy to read the kids a bedtime story again and I LOVE it... I don't actually like eating meat at all... but if it means that I can roll Oatie and do all the things that I need to get done in a day... I will eat meat.... as long as it's "responsible" farming practices if you know what I mean.

My skin is great and my hair is too and I just feel GREAT!

Finally feeling able to get organised...

I'm an organised kind of person, and I don't like disorganisation, as it's a waste of time totally!  When I execute a plan, it's done to military precision! and no I'm not kidding!  I was a PA lol!

Today I finally got the babies passport done... had a moment of disorganisation when my friend the guarantor forgot to bring her passport the other day and then we both forgot that she didn't phone her number through.. so at the office they were like the form is great but!!!  I was like arghghghg my friend is not home during the day much... nor is she one to carry a cell phone either!  Howerever as Luck will have it... she was home and had her passport to hand!!!!! YAY!

So the babies passport is sent off :) and now I just need to send the Babies and Oaties off to Washington State for our other passports.... We have one dual citizen in the house and that is the baby!

When we got back I cleaned the inside of my car, which looks great and, the kids piano recital has been moved to the week after, after a double booking so we have a free weekend!!!!  There is a disability expo tomorrow so might go to that other then that!  I don't know what we are doing which is also FUN!

But gradually getting things back into a grove and looking forward to getting my rolling time back with Oatie very much so!