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?
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?
No eggs, Melanie - only compassion and kudos for having the courage to post your thoughts and feelings, Oatie's feelings. And no follower is going to disappear because we ALL understand and appreciate your experiences. Your outrage, your sadness - all appropriate responses to the situations that you have faced. You do everything in the name of love and devotion and I respect that. Our culture has so much to learn about equality. Hope the rant was cathartic!!
ReplyDeleteNo eggs from me either and you will not lose any followers from my family. We know exactly the feelings that you describe and still after 12 years experience the same situations, over and over. There are, however, those few who do understand and respect and care.
ReplyDeleteI just cannot imagine how our kids feel and experience the indifference and sometimes outrageous behaviors of those whom they confront. They may not be able to express it but they feel it. We also feel the indifference from others and institutions because it hurts our kids. And, telling those people is of little value because of a social wall of denial that is built by them.
I wish I had a hint of an answer, but I don't...as I tell Sharon, it creates in oneself a healthy disdain for most of humanity...there are a few exceptions and those exist mostly in the world of disability.
I hope tomorrow is a better day.
You both are so lovely... Words cannot say how special and lovely you are. Ok it looks like scrambled eggs or omelet all round! Lol! I agree, The nicest people I have met or the least selfish is in the world of disability. Today is one year for us since his diagnosis. With Oatie I see the hurt go in, he doesn't say but he has this shrug-huff thing like it's shield (if I want to be involved or included I have to endure this... And pretends he didn't hear it) if I call my kids down for dinner in a quiet voice, it's Oatie you'll hear at frog hop full speed, not my older two who just want to play x for a minute more.
ReplyDeletei love your honesty.. i'm also thinking how come I don't know what ABR is I'll google that. I have a special kiddo too.
ReplyDeleteDear Sherry,
ReplyDeleteThank you for your kind comment, it took two special friends a month to get me to post yesterdays one. (Sharon and Phil).
Thank you for visiting our Blog and please feel free to follow Oatie if you like. I'd also love to hear your story.
I found out about ABR by accident, I was looking for a book about what to do about Brain injury, it was one year ago today, when we got his diagosis and I remember being sat at my computer like, OK he has brain damage now what? Either I can accept it, or we can do something to help him and I came across a book "So you have a brain injured child... now what" or something to that effect, and I'm still on the library wait-list, well while I was googling for it's ISBN I found a very short sentence on ABR and it took me one hour to find ABR on the internet.
ABR (advanced biomechanical rehabilitation) I'm not the best person to explain it but, basically all the core muscles collapse in brain injuries like Cerebral Palsy which is what you spend your time working on "reinflating the core muscles".
Here is the website: http://www.blyum.com/
If you look at Oatie's popular posts, below the cat photo, you'll see a photo of Oatie in his Diaper/Nappy and you can see his before ABR last March and after 6 months of ABR, each child/case is different. What I really like is that you feel part of a team of your child's rehabilitation and all the tools and exercises and techniques are all tailor-made for your child. We are really pleased with our choice of ABR.
If you wanted to read about other families who are all doing ABR who have blogs too, have a look on the Right hand side above the cat photo under "Cool links"
It is s a pain free therapy that you do at home, yourself on your special kiddo. At any of the ABR locations they can train you and it a several day trainings to help you develop the technique, in the first year you go back quarterly, the trainers are amazing and well, we're coming up to one year of ABR in Feb/March and we're really pleased, with ABR, with all of it really.
They also offer a free no obligation DVD which they will post to you so you can see some case studies.
If you have any questions about ABR or any of my multitude of ramblings, please feel free to contact me,
Mel
x