Wednesday, July 27, 2011

Happy Birthday! Oatie is 4!

Oatie turned 4. The main thing is that he had a brilliant day! We hadn't decided on a birthday party as such as a lot of our good friends are on holiday or about to go this week. So we'll probably have a gathering of people to celebrate his birthday in a few weeks time. I am sure he won't mind... he'll get another cake!

If you don't want to read a rant! then scroll down to the photos below! (It's about disabled people being excluded by able people)
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For me it was a day of mixed feelings, I suppose the difference between my older two's birthday and Oats. My older two at the same age, had a hall full of people... and Oatie, well not many of his peers would come.

Still even now, you think someone has got it, got Oatie and on your inner circle of Oatie Supporters... only to find that this person, when it comes down to the crunch.... is actually no different, at the core than the people who view "disability" with disdain...... it's the exclusion, I think it's the exclusion that I find the hardest. (In a nutshell, Oatie doesn't get invited to a party but a non-physically restricted person does, who both (Oatie and this boy) know the boy, both from the same place). It wasn't that Oatie didn't get invited as such, it was that it was all "secret-secret, hush-hush" as the mum was I thought from the inner circle of families that I trust. I think what it was was the fact that it was all hush-hush, but then they spoke about it right in front of me, and rubbed your face in it too... not once but over DAYS! (the boy in question and Oatie are a few days apart in age so it wasn't like he's 8 and Oaties 4) and it wasn't like she said..., "I'd like to invite him but it's going to be a boisterous kick a ball around party..." and give him the choice. It was also at her house so it wasn't like 15$ per person nor did she ask If I would stay with him as I would do.

Then the mum (also a friend of mine) from the boy who was invited... did say, when she asked about directions..."Oh I thought that Oatie would be invited, as (friends/same age/ your neighbours). and she felt bad... she then said... "ahh Exclusion.." "I was like, yep probably..." And told her not to feel bad, they can invite whom ever they want and it isn't and won't be the last time Oatie will be EXCLUDED from things.

nevertheless, you cannot be surprised at other peoples crapness... I feel like Jack Burns from "Meet the F's..." she's out my circle of trust! lol! All I wanted was honesty... and not some whisperings behind my back!

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Oatie showing off his Drinking Skills with a Glass
A new Dora DVD for his ABR Bench time...
Dora Cake with Sparklers and Candles
Today (Wednesday) Oatie and I got in 3 hours of ABR, we did one of the new style exercises and two favorites of mine. We watched one of his new Thomas Tank DVD's.

Wednesday, July 20, 2011

Looking forward to resuming Oatie's bench ABR with him - Time Management

Today I tried swimming, I didn't want to...but some mums on the bench pretty much forced me into the pool.   I swam very very very slowly, 48seconds for 25metres... YEP I didn't know I could move that slow in a pool.  I was swimming in slow motion and then stopped at the end, had some water and did the same thing back.  After about 20 minutes.... my throat felt like I had stitches in it, which had gone tight and felt itchy.... so I immediately got out, got dressed in 2 minutes flat and went back to my car and found a throat lozenge and had a warm soothing tea, which made it feel much better.  On the upside... it felt nice having a open airway, I must have had that lump for YEARS!!!  The Surgeon said I could have swum 9 days ago, but I really couldn't picture that at all!

For the past 3 weeks, my older two have been at Figure skating camp, its in our local recreation centre so the pool is 20metres from the rink.  My 6 year old learnt her loop, and has got some new music for this upcoming season, dance of the Sugar Plum Fairies.

My 8 year old, regained his Loop, and learnt his Flip and Lutz.  And is skating to a new track too.  Don't ask me what the jumps look like! I just sew the outfits and lace them up and get their skates sharpened and clap when necessary!

I had a heart in my mouth moment, my 6 year old who is wearing a two layer, lined with sorbothane soled touque mushroom hat, with a super thick woolly hat on top (it's a bit like an Ice Halo but hidden inside two wolly hats), yes so she does look a bit like Toad from Mario... She Went down and well no one could tell if she bumped her head on the back or not, there was no sound at all, and usually you can hear it....so I have been told...  It was my nightmare, the reason I held on to the helmet and held her skating back..she would jump with it on and fall because it would throw her off balance having this thing on her head.  I am learning to skate and if I try a basic jump one that my daughter could do at age 4.... the helmet does give me a huge headache and puts my neck out..... Having ONE brain injured child... It was very hard for me to let her, skate without her helmet, so this mushroom hat was our compromise...  well as it turns out, she was shocked, it's the first time in nearly 3 years that her head has remotely got close to the ice...fortunately no bang, and if there was any impact the sorbothane must have taken it out as she was absolutely fine...  What was ironic....  we were in the changing room just yesterday, her glove was missing so I bent down to look in her bag she stood over the top of me and I didn't know... I stood up and WHOP!!!! we SMACKED heads, mine hurt a lot... she got a bump and break in the skin on her forehead... but fortunately no concussion...  I know helmets are topical at the moment, but she was more injured from what happened in the changing room than what has ever happened to her on the ice.  When they compete, and their adrenaline is going that's the only time I worry and when they step back on land, I'm jumping up and down shouting, no brain injury WHOO HOO!, my friend said don't you care where they place... I'm like NOPE!!!

Because of the age of my daughter 6, and last year and the year before because of my Son he was 6, so this is my third Summer on the Bench for 3 weeks.  One of us ideally should be rink side, for lacing and just because they are\were so young, and when they are 8 or so they can be left.  There are some nice mums ont the bench/stands so it's a nice social for us... something I don't get to do as much since Oaties diagnosis...as I spend a lot of my free time doing his ABR...

Last Summer I managed the 3 hours ABR from Lunch till 4pm on the back of the skate camp (7.30 to 3.15) as my husband took over the "pm shift" and I'd fit a 1km swim in the morning while the kids were doing dry land training between 9-10.  This year, upon swapping with my husband, Oatie and I have been taking a naps in the pm's during the past 3 weeks.  It's the only thing that will take the pain away in my throat, resets it and makes me sociable in the evening. And today was my first 9-10am swim.

So From tomorrow or Friday I am looking forward to getting back into our ABR routine as Thursday is the last day of camp.  Speaking of ABR, I cannot believe that we are their blogging winner for this quarter.  The other ABR families who also have blogs have fantastic blogs and well I am honoured, flattered, stunned and a bit speechless that we won.

Thank you to every one who reads our blog and follows Oatie.  Oatie turns 4 on the 25th July!


Tuesday, July 19, 2011

RSI has recovered and need to buy some bulk ear defenders LOL!

OK, I'm back! and No I have been a good patient and not spoken too much... but I thought I'd be bursting to say stuff that I wanted to say for 2 weeks but really I wasn't.  I know that people go on retreats that do this... but I had mine with a cold laser.  (Benign Granuloma on my vocal cords).

I am a 50-50 extrovert introvert according to the psych tests they did at British Airwasys.  They loved that I was a 50-50 extro intro split.. and did a different test to see if it came out the same and it did.  Well I AM a Gemini what did they expect!

So as much as I LOVE to talk, I am quite happy being silent too.  But when I talk I do talk with passion and super fast... well you can get more words per minute! lol!

What I found shocking from not speaking, was how FANTASTIC this speak it app was.  OMG if you ever lose your voice, please download it... for a long term speech app, they need to have a conversation page skype style so you can press return rather than pressing speak it all the time but apart from that!  I don't think I would have survived without it.  It was the best few bucks I have EVER spent! The accents were life like too, not too bad, not robotic and pretty good actually....

Ok, well the few things I found shocking from not being able to talk for two weeks was:

  • How people perceived you, like people you encounter on a daily basis.
  • How willing your friends were to help or not help...
  • How people try and take advantage of you financially, I had one person try and short change me thinking because I couldn't speak... that she could do it and i can't complain!  Well! she wasn't prepared for my iphone app or my Ipad to come out and me tap out a SUITABLE response back to her!!!
  • How you get IGNORED!
  • How you get taken advantage of......
  • How you can't shout for help
  • How even with the app, you can't convey the nuances or your feelings as you do when you have a "voice"
  • How isolating it really is... thank goodness for this app... but even with that... WOW! it made me want to cry!
  • How rude people are to you... 
  • How people see your not speaking as an annoyance to them!
  • How they automatically think you're "ill"
  • The ILL treatment I got at hospital after the operation and I couldn't COMPLAIN!
  • Or when the surgeon came around after and asked if I had any questions!!!  (I'm like are you a total idiot!) he wasn't ready for my pre printed questions was he lol!
Oatie and I went out together, and it was almost a comic act, he can't walk and I couldn't talk... so he did the talking and I did the walking.  We had this comic moment where I asked for a price check... Oatie swiped my phone and wnated to play.... so I swiped it back and typed that I needed to thank the cashier(she was a nice one) and he said "OK I do it!" swiped my phone back and did his letters during the transaction.  I had just paid... he looked up and said "Thank you LADY!! Have a nice Day", turned back to me in his stroller and said "done it Mum, lets go!".  I wished I could have laughed out loud...

I even had one man, we live out in the country, and I pulled over on a road that has 5 people a day on it.  It's a dead end road.  This NICE person pulled up next to me... I just got a call and pulled turned off the main road to this dead end road to reply back and play the pre recorded message to say phone my husband....  This man asked if I was ok, so I gave him the thumbs up... he then asked if he could talk to me... and I shook my head no....  He said put my window down NOW! and talk to him or he'd call hte police as he thought I had been STRANGLED from not being able to talk!  Anyway there were like 100000000000000000 mosquitoes outside... and I was like arghghghg.  I was a bit annoyed by this stage as I didn't want the mosquitoes in my car, they love Biting me! and well I had just got the pre-recorded message to play down the phone to the person who had just rung me... so I had to delete that to find the other pre recorded message and then add to it to say that I was fine and can't talk from my throat operation.  By this stage he's shouting he's dialling 911!  So i opened my window a smidgen and held my phone outside and played the recording to him....  he was like OH! so you're ok? I'm nodding... no one has hurt you and I'm shaking my head... no... meanwhile 100 mosquito's came in the car!  I couldn't even scream when they bit me :((

I was thankful that he stopped to see if I was ok as in the UK they would just drive by... but I think it was the frustration of not being able to communicate... something that we all take for granted.

How often do you think how lucky we are to have speech?  Well I went home and squashed my Oatie, as he can speak but it's sometimes unclear and not many spontaneous words and he expresses basic feeling but not the nuances that my other kids do... like the detail.  I am thankful that Oatie has that... but my not speaking for 2 weeks has really opened my eyes to how my aunt must have felt who had some strokes and degenerative diseases and Oatie and his friends who are special like him.


Please please please, do not speak at all if you lose your voice... just don't do it... download "Speak it" from the app store if you are an apple user!  So many accents you can choose from!

I'm hoping my operation isn't a failure as my friend and I went to see Bridesmaids 3 days after I could talk again and I hadn't laughed so much in ages... she wanted to see it during my silence and I'm glad I didn't as I would have broken it for sure!

The Ear Defenders and Tylenol are for my friends who I've been madly tapping away at my keyboard on my speak it app for two weeks and now catching up properly....

Monday, July 18, 2011

ABR Oatie Comparison File March 2010 to May 2011

Here is a comparison photo of Oatie before ABR and after one year of ABR





Look at his spine and his shoulder blades and the tops of his shoulders.  On the Left photo he had to be supported or he would fall over and he was sat on a firm surface.  On the Right he is sat on a mattress... so it's squishy and less supportive.


March 2011
May2010

Before ABR, I called this the sack of potatoes look... you could push him over with a gentle shove...
Wider pelvis allowing a better sitting platform. One can also see the better definition between the right, left and central segments of the back. May 2011

Sunday, July 17, 2011

Animal Bop

Today I found Animal Bop in my Itunes Library. We The kids haven't danced to it really since we moved. today I came across it while looking for a different tune....

The kids Loved it... Oatie was in his element and enjoyed dancing to it as much as my daughter. My eldest got into the spirit of it after initially saying it was babyish... but enjoyed rolling around the floor with the rest of us too all pretending to be snakes.

Tomorrow I feel strong enough/ recovered to try doing Oaties ABR with him. I found the weeks before the op that I found any physical activity hard... as I felt the lump got in the way (even though i have been told that that isn't possible?) I notice the difference eating and drinking too... or lifting a kid.

We were playing around with the photo booth App with my ipad... Here is Oatie finding it a total scream!

Saturday, July 16, 2011

Tuesday, July 5, 2011

Oatie Chalking...

We have had this easel for years, we bought it when my eldest was 1 years old.  In England I used to have a pottery studio off the back of our garage and well, since we've moved all my pottery things and this easel have all been in our garage.

Oatie doesn't really like art, he really doesn't like getting his hands dirty.  Anyway he liked Chalking outside with my daughter so we lifted the easel in and pushed it up against the wall and put it by the front door and well he now LOVES it, as it has letters down the sides and he's now drawing !!! Yippee!

Still recovering from the operation... :)
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