Person first language

I saw this poster of Down Syndrome Ireland in the library today. I liked it so much that I was thinking about it the whole day. Here is a more detailed explanation of their person first language.

It really-really resonates with me. Especially these parts:

• "A baby born with Down syndrome is not a “Down’s child” or a “Down syndrome baby.”" 
• "It is also important to use correct terminology. A person does not “suffer” from Down syndrome, nor are they “afflicted”. It is not a disease. Down syndrome is a chromosomal condition which results in an extra copy of the 21st chromosome. It was discovered by Dr. John Langdon Down." "
• Person First language emphasises respect for the individual. A child is much more than a label. Help to educate family, friends and professionals about the preferred way to refer to a person with Down syndrome."

Trying to translate these statements into dwarfism terms would be very interesting, wouldn't it...

• A baby born with dwarfism is not a dwarf or any other label e.g. noun.
• Dwarfism is not a disease but it is a genetic condition.

Only one question remains, why do members of the dwarfism community promote the use of labels such as "dwarf" and "little person"? 

Murphy should resign...

I think everyone who have kids can relate to this... My life is a chapter in Murphy's book of laws... I am not saying this to complain, I have resigned to the fact by now.

In a few words:
- first day of school and creche
- deadline for assignment submission because jerk FAILED ME by 1 %...
- up all night with Tara vomiting
- nanny still on holiday
- husband not working from home for 1 day
- work calls on my day offs
- and the clingiest toddler in the history of mankind...

Can Mr Murphy please just resign.

Oh wait I have another one... Tomorrow is my first work day and I will start bright and early at ENT with Tara because I had to drug her up every day of the holiday

I came across this fascinating article

while writing my latest assignment for my masters... It was on additional learning needs and I wrote about achondroplasia... And when searching on a historical explanation about society's attitude's to people with short stature, I bumped into this incredibly well-written piece... Enjoy

Got to boast....

We went to see Fi's paediatrician today, we attend her at the busiest maternity hospital in Dublin, but she actually works as a neonatologist at one of the children's hospitals. She asked me if I would be interested in giving a presentation to the registrars at the hospital about hypochondroplasia and about our experience and all the research I have done.
I am not sure if it will actually happen, but I guess this explains why she is our paed, although she is officially a neonatologist, I am not letting go of her, and she is not trying to discharge us either... :-)))

Cognitive dissonance

according to wikipedia is the term used in modern psychology to describe the state of holding two or more conflicting cognitions (e.g., ideas, beliefs, values, emotional reactions) simultaneously. An example of this would be the conflict between wanting to smoke and knowing that smoking is unhealthy.

What I have been wanting to write about is not cognitive dissonance in the true sense of the word, but I can't find a better term for it. How can someone be so imperfect, yet so perfect to me? How can I be so aware most of the time of her condition and how can she not? How can I raise her to believe that she is just like her sisters and has no limitations?
I can't put my head around it. You all know me by now, I need to rationalize until the point of understanding or utter exhaustion.

It is Sunday night

and I am hectically trying to finish up all work, get the house sorted, do all kids Admin, etc. Before I head off to London for a team meeting for 3 days.
I work every night, it's the price I pay for having the afternoon for my children... Most nights I don't mind, but now as I will be leaving for 2 nights, I would like to snuggle up between them (Tara and Lia share a double bed :-))...

For 3 days, I will be a career woman, I will dress up nicely, have proper make up on, wear business clothes with no food, snot and puke on them. I will be known for me, as the funny and intelligent and humble creature I am... I will wear jewelry without it becoming a choking hazard. I am getting a manicure done tomorrow morning, YAY for business trips...

I will bring 2 books along, I will get tipsy with my colleagues - for my American readers, this is a European thing, we have thins thing, we must get drunk together with the people we work with... Don't ask me why... I won't get very drunk, good Lord, I have been pregnant and/or breastfeeding for 6 years, I take 2 sips of wine and I am done...  Long are the days of my alcohol tolerance gone.

I will be up until the early hours in the morning, chatting with old friends, feeling like a person in my own right. I may even have a bath, I don't think I actually had one since Fi was born.

And then by about Wednesday afternoon, I will start to miss my children terribly, I will look at all my career focused colleagues in the city and know that this self-important life wouldn't satisfy me any longer, I want snot on my clothes... and I am happy to be someone's mummy... This is when I will turn to Louise, she is the only other female on our team on about 20 30 some year olds with kids... We made a pact that we will go to a quiet corner and do the mummy talk when we get really desperate...

So yes, I am all freaked out about leaving Fi for 2 nights, she LOVEs to feed, she comes up to me, and pulls on my top and bra and says milk-milk ever so often... I have no idea, how she will cope, but probably she will be a lot less upset than I am for having to leave them for a few days...

I know that I have an easy life and the vast majority of women need to get up and get dressed and leave their kids every day, and even over night... I do realize how extremely fortunate I am to have such an amazing employer. But still, I will miss them terribly... Maybe one of my work mates will throw up all over my clothes, that may make me feel a bit better...

Surviving August

I know I will... Just not sure, how... Here is the set up...
Number of children in the house: 3...
Number of parents working full time: 2 albeit from home and flex hours but still needing to put in 8-10 hours a day...
Number of parent having to complete masters needing lots of help from wife: 1
Number of parents whose client's contract just got renewed and will be mad busy with transition - 1 and it's me...
Parents wanting kids to have a great August - 2...

We will figure it out, we have help for 6 hours every day so we'd better make most of it... Tara will do camp for 1 week, that will help...

I really need to start to share here all my research about the growth hormone treatment and start listing my questions as I will be taking Fi to see the French endocrinologist involved in the interesting study in Sep...

Some light holiday reading

I was going to post about our holiday without internet access (YAY) but bumped into this article... I have been wanting to post about the subject of the new genetic testing whereby screening for a multitude f genetic conditions will be possible in the early stages of pregnancy without an invasive test.
I will save my personal thoughts and confused feelings for another post, but for now. Read this truly remarkable article:

Other parents' blogs

Bloody blogger just deleted all the blogs that I have been following. I will try and recreate the list based on comments, but if you used to be on my blogroll and can't see yourself, please comment here. I do want to follow, I just can't remember everyone's URL... ARGHHHHHH

Rhetorical question of the day:

Why does someone become a pediatric orthopedic consultant if they hardly even look at a patient? I realize hospitals in Ireland suck, they are busy, dirty, a bit like a horrible zoo really, but wouldn't you want to make a difference?
When he reviewed Fi's x-rays he actually said that he wouldn't think that her x-rays belong to someone with HCH as her bones look all normal. Yea, this is why hypo goes undiagnosed until kids are 2 or even older... Can't wait to see him again in 6 months...
I asked him 2 test questions, both answers were incorrect, so none of our ortho questions got answered today. Lucky we will see Dr. Standard in October...

Random

How will I ever be able to say no to these eyes????

Ok so this one made me cry and smile

I am not into this whole thing about finding a meaning why Fi is our child, but this one made me smile and cry at the same time...

http://www.downsyn.com/bombeck.php

No New Year's resolutions for me

Nope, stopped doing them at 21 or so, not great at following through and way too cynical to even try... Instead I will do a wishlist for each member of the family, not the same thing, not at all :-))

George - I hope that in 2012 he will enjoy his job, he just started a new job and he had 2 horrible bosses in the last few years so he really needs a decent boss and a job that offers enough challenge but allows him to still have a life, I think it looks like he may have found it...  Oh, and I hope he can finish his MA, that's a huge thing for him.
Tara - since she got hear ear tubes her hearing has become so much matter - please may this be the year that her speech will catch up so I can stop worrying myself to death, pretty pretty please... This is a special request to the speech fairy... Please fly by...
Lia - She is perfect the way she is, really, so I just hope that I will somehow have more patience for this 3 year old who is just like ME so drives me up the flipping wall... Please, patience fairy, come by QUICK...
Fiona, - I just hope that her speech will be good, since we are bilingual and she has HCH, please speech fairy, we really need you...
For me... Ok this is a long list, I am a selfish person... OK, I need to stay employed, so I really need our client to extend this contract, pretty please, contract extension fairy... And I need to continue to work on my masters too and it's so BORING.  Oh and I stopped eating sweets for Fiona, because we will need to watch her nutrition, so now is the best time for me to stop as she is starting solids, I can do it for her, easy-peasy, and this is not a resolution, not at all... And last but not least, I have perspective, I really do I just have to remember to focus on it. LOTS.
Oh and we really need to get on with the grandparents this year, can't have any more drama...

We'll celebrate Christmas tomorrow morning

Because I am too excited and because my husband will take the 2 older girls to visit the grandparents on the 27th, so I wanted to have a chance to admire the kids playing with their new toys for a day longer. Fi and I will stay, because I can't stand the cold, I need to work and need to write 2 assignments for this course I am taking, I am doing an MA in Learning and Education, it is a really cool online course...
Tara will be up at like 6... so I hid Lia's present behind the curtain in case we don't hear when she sneaks downstairs, that wouldn't be good... :-)

This and that

I haven't written for a while, I have so many things that I want to write about, why am I not doing it..?. I guess I have realized that I only have 2 weeks left from my maternity leave, so I am trying to spend it with the kids and I also started a masters, strangely enough I will have more time when I start to work, because I will have a nanny looking after Hannah every morning, so I haven't given up my hopes to make this blog a really informative one...
I also need to start to write more so that I don't freak my poor husband out by oversharing all my worries with him, it's a thing that we, mothers do, and men can't really relate to.
Fi is doing great, she really is the cutest baby ever, so chatty and smiley... I can't wait to see how she will change once she will get her ear tubes in in 2 weeks, it will be so nice to know that she will hear a lot better after that.
She also had a head CT, the local radiologist said that it looked good, but I won't believe anything until Dr. Pauli will have reviewed it next week, as this is the same radiologist who sent us home telling us that there was nothing wrong with her.
Tara has had so many playdates since she started school this September, well, I am sure other kids had much more, but for my standards, having 4 friends that regularly want to get together with her is fantastic, so this week another mum texted me organize something and when I said it to George he said the most painful thing again: He said that he bets noone will want to play with Fiona. He says something like this and I spend 3 weeks  thinking about it, chewing over it. He is such an introvert, he just gets on with it, yet from little comments like this, I can tell that he is always thinking of her condition and how she might be disadvantaged because of it...

This and that

I haven't been writing much lately, I guess the main reason is that I have done most of my research, I think I have done more writing and taking notes than in the last 10 years total... If I would only find the time to at least add all the links here... I will try...
The second reason is that Fiona is doing rather well, so I have stopped worrying all the time, well at least for now... I think both her HC and height are still on the average height chart, but only just about... She is nearly 4 months now and is a real sweetheart, she is interacting so much, full of smiles and chuckles, she is chewing on her little chubby hands and is now properly manipulating her toys. She can hold things now in her hand, just won't grab on her own yet.
The third reason is that I have been quite busy working with Tara on her speech and school stuff...So it has all been very busy, I can't wait for my maternity leave to end, so that I will have the childminder in the house for when I work and will actually have a few minutes to myself, I know this sounds bizarre...
We will go and see Dr Pauli in 2 weeks am very excited about it, not sure what he will say...

If I was a radiologist...

If I was a pediatric radiologist, who had sent a woman home with a 3 day old baby assuring her that her child didn't have achondroplasia or hypochondroplasia, telling her that the x-rays were all clear, I think I would want to see the list of radiology findings (if offered to me by the mother) that another specialist could list based on the same x-rays I have reviewed...
I think I would try to get over my pride and my desire to learn from my mistake would be greater than my ego...

Sadly the radiologist where Fi was born doesn't think like me, so only God knows how many children will go un-diagnosed, because they don't have a pathologically information hungry mother who sends their baby's X-rays to the one of the best experts in the world...

Grandma list 1

For the longest time, well, ever since we started having kids, I have wanted to start a list for me, when I will be a granny, to remind me of what I as a young mother needed as help. I hope that I will to see all 3 girls having children, but I won't go down the sentimental route now...

So why the granny list, because both grannies in our families - as gorgeous and well meaning as they are - because they are both lovely and always have our and the kids' best interest at heart, have been driving us up the flippin' wall ever since the girls were born :-). We love them dearly and we know that we too are far from perfect...

So I will add the first item today: When my daughter will spend her daily hour in front  of the computer without having to attend to any of the children, I shall not initiate the discussion of recipes :-)...

Fifi's lullaby

Random 1

Fi is not quite 6 weeks today and as I was walking to the pharmacy today I had a really sad thought, which I haven't had since the  first little people meeting we attended a week ago.
I saw a man standing in front of the bookies at 9:56 in the morning, waiting so anxiously for them to open...