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Don't pity me because my child has Down syndrome
Jules' story


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#26 just roses

Posted 10 May 2011 - 02:03 PM

When I was pregnant with my second baby, we were told there was a high risk that she would have Down syndrome. Because we never had further testing, we didn't know for sure until after she was born.

It turns out that our daughter doesn't have Down syndrome, but while pregnant I realised that the thing I feared most was that I would have to spend my life justifying her place in this world.

Isn't that sad? I knew we'd love her, I knew she'd be awesome, I knew we'd cope with any medical problems or setbacks. I just worried that we, as her family, would be the only one to know the full value of her life.

Thank you for your article. I hope many people read it and that it helps to change some of the attitudes that people have. And I hope that, as parents, we can all be free to rejoice in our children; to celebrate the things that make them uniquely them.

#27 TeachmeMum

Posted 10 May 2011 - 02:20 PM

Thankyou Julia for sharing both your stories, you are one amazing woman who never gave up. I always love looking at your gorgeous girls in your sig. You are truly blessed to have 4 beautiful girls happy.gif

#28 vegiepatch

Posted 10 May 2011 - 03:30 PM

Beautiful story

#29 Sares83

Posted 10 May 2011 - 03:45 PM

Love the story Jules, thanks for sharing!

P.S. That photo in your article gave me the biggest smile, Georgia is just gorgeous! original.gif

#30 OzSpen

Posted 10 May 2011 - 03:57 PM

QUOTE (EBeditor @ 09/05/2011, 11:12 PM) <{POST_SNAPBACK}>
Read more
http://www.essentialbaby.com.au/life-style...0509-1ef62.html

You may know Julia (Jules363) from the feature member story she shared with EB in 2006, or from the adorable sig in her profile. Her journey has since led in a new direction, as she shares in this update.

You can leave a message for Jules here.

Jules,

You were such an encouragement to me with your lovely story and love for your daughter - and I'm a Dad and Grandad.

May you be enriched in your love every day.

#31 ~JASB~

Posted 10 May 2011 - 05:37 PM

Beautiful original.gif  Thanks for sharing!

#32 .Jerry.

Posted 10 May 2011 - 05:54 PM

Great story! original.gif

It's fabulous reading about Georgia's progress.

Best wishes...

#33 RCTP

Posted 10 May 2011 - 06:34 PM

What a great article. Well said Jules.

Georgia is a beauty  biggrin.gif

#34 Angel1977

Posted 10 May 2011 - 06:45 PM

Jules I love when you reply to a thread as the photo of your four gorgeous girls makes me smile every time I see it  original.gif

#35 charliebean

Posted 10 May 2011 - 08:20 PM

Your sig always catches my eye too, not because your daughter has DS but because all 4 look absolutely gorgeous, happy and connected with each other.

#36 Pearson

Posted 10 May 2011 - 09:00 PM

I never look at DS parents with pity, nor DS kids.  I look at them with a smile from ear to ear. The experiences I have had with DS kids has been nothing short of enjoyable and joyful.  The love that they have in their hearts, and the affection that they show to their nearest and dearest is extraordinary.

I promise Jules, if I ever see you with your daughter, my smile will only increase!!!
You are so lucky to have all of this love from your 3 daughters, your husband and that cheeky Georgia in your picture!

hugs and love

#37 CallMeFeral

Posted 10 May 2011 - 09:22 PM

I love your attitude to your daughter but I don't really see how people feeling sympathy (call it pity if you want to make it sound more patronising) for you is deduced by you to correlate to loving your child less. People sympathise about things that are hard. Things that are joyful can still be hard. Things that can make you grow as a person to someone you'd never have been - can still be hard. Nobody, I'm pretty sure, wishes for a disabled child. People wish for a life as perfect as it can be - even if that's not the life that will build their character and deepen their highs and lows. It's just what we're built to hope for. And then sympathise with - or pity if you like - people who don't get it.

My brother has a disability, and as a child another child once said to me that she pitied me for having a disabled brother. I was furious - it was like she was making him only his disability, and making him a less desirable brother because of it.
Which of course wasn't true. I defended him hotly. He was a wonderful brother.
BUT... my life will be harder because of him. I will be forced to support him at some stage.
My mother's life was more stressful because of him. She cut short her plans to have a bigger family, because of the work my brother would require. She had to worry about him long after the age when most parents see their children become independent and able to care for themselves.
Ditto my father.

Life will be harder because of his disability, for many people. Do we wish he weren't around? Definitely not. Do we love him less? Quite the opposite. Was he a joy to be around, as a child? Absolutely. Did we become deeper and less superficial people because of his presence in our life? Possibly.

Would we wish a disabled child ourself?
No.
Life would be harder, and we don't wish for a harder life.
That's what the sympathy/pity is for.

It's not an insult to your daughter.

#38 jules363

Posted 10 May 2011 - 10:22 PM

Hi CallMeAl,

Having a child with a disability certainly isn't easy, and I was at pains to try and make it clear that I am not trying to gloss over it.  I spend a lot of time and energy worrying about the future, the amount of support she is going to need, and who is going to provide it.  I am sure the same can be said for all parents of disabled children....it is a very real concern.

Some people most certainly are well meaning in their sympathy, and some do sound patronising I'm afraid, and even insulting.  What would you make of a comment hoping that I had other children?  To soften the blow, because this one is a little disappointing?  I am pretty thick skinned when it comes to this kind of stuff, but I can't hear something like that, and not hurt...for her.  As a PP said, I do spend a lot of time justifying her place in the world...sometimes I feel like I have to almost sell her to people.  I shouldn't have to do that.

None of us know what is going to happen tomorrow, but for now, she makes us happy.  She's there to be enjoyed, and treasured like every other child, and it's nothing less than she deserves.  I have to try and change peoples attitudes, change the way they see her.  I have to fight for her.  That's my job original.gif


Edited for typo's and to make sense...

Edited by jules363, 10 May 2011 - 10:27 PM.


#39 Guest_FuzzyMum_*

Posted 10 May 2011 - 10:26 PM

QUOTE
QUOTE (jules363 @ 10/05/2011, 10:22 PM) <{POST_SNAPBACK}>

I have to fight for her.  That's my job original.gif




Judging by this, you're doing a brilliant job. Keep fighting for her. original.gif

#40 monkeys mum

Posted 10 May 2011 - 10:44 PM

Gorgeous to read how well she is going!



#41 Alejoviveros

Posted 11 May 2011 - 12:42 AM

Julia,

I can relate to you. I have a boy with down, he is almost two years and for me and my wife is the best thing ever happend to us. He is beautiful and always happy. I have seeing people that looked at us with pity but they are ignorant, they cannot imagine who a child lke this can change your life and give you so much joy.

#42 EJMUM

Posted 11 May 2011 - 02:45 PM

Oh - your daughter is so gorgeous! I love this photo! thanks for your article - I am sad at how ignorant and insensitive people are.

#43 CallMeFeral

Posted 11 May 2011 - 07:01 PM

QUOTE (jules363 @ 10/05/2011, 10:22 PM) <{POST_SNAPBACK}>
Hi CallMeAl,

Having a child with a disability certainly isn't easy, and I was at pains to try and make it clear that I am not trying to gloss over it.  I spend a lot of time and energy worrying about the future, the amount of support she is going to need, and who is going to provide it.  I am sure the same can be said for all parents of disabled children....it is a very real concern.

Some people most certainly are well meaning in their sympathy, and some do sound patronising I'm afraid, and even insulting.  What would you make of a comment hoping that I had other children?  To soften the blow, because this one is a little disappointing?  I am pretty thick skinned when it comes to this kind of stuff, but I can't hear something like that, and not hurt...for her.  As a PP said, I do spend a lot of time justifying her place in the world...sometimes I feel like I have to almost sell her to people.  I shouldn't have to do that.

None of us know what is going to happen tomorrow, but for now, she makes us happy.  She's there to be enjoyed, and treasured like every other child, and it's nothing less than she deserves.  I have to try and change peoples attitudes, change the way they see her.  I have to fight for her.  That's my job original.gif


Edited for typo's and to make sense...


Fair enough original.gif
And in a way I guess I feel the same way. As much as I know my life is harder because of my brother, I still do get super defensive if someone implies or suggests he's defective in some way. Some people only see the disability.

At the same time though, I feel for people who have special needs children, because every pregnancy that is one of my fears - that my child will not be normal, that my whole life path will change for one significantly more difficult than my current one. Spurred on of course by the ones I consider the extreme end of the spectrum - people who have had to give up work and their own lives and interests to become full time carer to a vegetable... etc etc. In contemplating whether to have another child this is constantly in my mind... what if all does not go well... what if I end up with a child who requires so much attention that my existing children get neglected... is it fair on them for me to even expose them to that risk? Things like that weigh on me.

Therefore... I feel for people anywhere on this spectrum. And I would hate for that to be confused with not being able to see the value of the child, or thinking them as lesser, or just being patronising or even thinking that non disabled children are 'better' (easier yes I think because the world is catered to them - but that's different from better).

But you're right - there is a lot of judgement still out there, and a lot of patronising - and that comment about hoping you have other children is awful. Even their reaction sounded awful... when I imagine myself in their position - smiling at you enjoying your baby - I would have thought I'd have smiled even wider when I saw her, saw her disability, smiled more deeply to see how loved she was.
But I'd have felt for you too. The same way, on mothers day, I was feeling for my mum, and how her life path changed when she had my brother, how scared she would have been (his disability was rare and nobody knew the prognosis), etc etc.
And I'd hate for that to be mistaken for an insult.

#44 LeeB

Posted 11 May 2011 - 07:26 PM

They say that children born with Down syndrome are new/innocent & pure souls.  I think they are all so beautiful!  Your article is well written & lovely.

You are so full of love, it's just beautiful! hheart.gif

#45 Sentient Puddle

Posted 11 May 2011 - 07:39 PM

Powerfully and beautifully written Jules - you and your girls rock - thanks for sharing! wub.gif

#46 jules363

Posted 11 May 2011 - 08:16 PM

I didn't know much about this world until I was thrust into it, either.  I hadn't really known many people with disabilties, though I had been fortunate to know a couple of people with Down syndrome a little bit, which helped, and sometimes hindered my thought processes in the days following Georgia's birth.  I know both these people had a great life, were loved by their parents etc, so that helped me feel more positive, and I could never feel sorry for these families, as I could see how happy they were.

In the case of more severe disability (Down syndrome is only "mild to moderate" on the "scale") however, I was more ignorant, I guess you could say, and I would have felt very sorry for the parents of some of these kids, that is if I wasn't crossing the road to avoid them, because I didn't know how to react.  So, to this end, I understand to a degree, but now I know differently, I want to try to help people understand that.

When Georgia was 12 months old or so, her Vision Australia case worker asked me if I wanted to become involved in a support group he was setting up for parents of children with vision impairments, as well as something else (in Georgia's case it was DS of course).  I said I would love to, and went along, not having a clue what to expect.  What I found was a small group, thankfully, there were only five of us all up,  and the others had disorders so severe that none of them were expected to survive to the age of 10.  I just sat there with silent tears running down my face, and then felt compelled to ask them whether I was really welcome to come back again, as i felt like I was rubbing my healthy baby, with the potential to walk, talk, learn etc in their faces.  That really put things in perspective.  They soon put me straight, and these mums are dear friends, long after our 6 week support group ended.  It's been a learning process for me, but I have come to realise that they don't want pity either.  They want acceptance for their child..perhaps a little less "us and them".  They want you to ask how their baby / child is today, and they want you to tell them they're beautiful.  They want to live as close to normal a family life as they can, with provision for their child to be included to whatever degree possible.  There are always going to be people with disabilities in the world.  Wouldn't it be ace if we could start seeing this as normal, sooner rather than later?


Disclaimer...I guess I should say that is what my friends with kids with disabilities seem to want...I can't speak for everyone, I'm still learning!

Edited by jules363, 11 May 2011 - 08:25 PM.


#47 CallMeFeral

Posted 12 May 2011 - 10:44 AM

QUOTE (LeeB @ 11/05/2011, 07:26 PM) <{POST_SNAPBACK}>
They say that children born with Down syndrome are new/innocent & pure souls.


I love this idea. Since my kids were born I have started to believe in this old/new soul business - DD just arrived like she'd been here before, whereas DS was much 'newer' IYKWIM.
Although in that context sometimes I think maybe the Downs kids are the old souls, who know how to be happy and life simply and not get caught up in the rubbish of daily living.

Jules... I guess something I'd never considered is what you say about many people not really knowing. Because disability has been in my life for as long as I can remember, I'm probably not fully aware of what it feels like to not know it, and the extent to which people might need to  be educated. I probably take that side for granted.
And your original article would be really important for that.

#48 MamaNita

Posted 13 May 2011 - 11:48 AM

Oh I don't pity you Jules.....I think that DS children / adults have the most infectious personality.

Your girls are beautiful  wub.gif

#49 shazallo

Posted 13 May 2011 - 07:31 PM

I read your story and remember how many times I have felt the same pity, cruel remarks, stares, well meaning & misguided comments over the years but none of it can ever take away the joy & love I feel for my daughter & the love she daily reciprocates to me.  She will be 25 this year and is not only my daughter but my best friend and the best travelling companion I good ever have.  
She has opened up a whole world of experiences that I would never have had without her and I hope you experience it too with your daughter.  My daughter has been an inspiration to my family as we have watched her overcome many obstacles to grow into the lovely young woman she is today.
The only downside to my life with my daughter with DS is that I can be extremely quick with nasty comments & swear words when I am provoked too far by insensitive and/or ignorant people!  sad.gif    
Watch out with this as it gets increasingly worse as your child grows, especially the school years!  ohmy.gif  



#50 anniesmum

Posted 14 May 2011 - 01:37 AM

My DH & I recently returned from a trip to Italy (not Holland, although that too would be worth visiting).

Whilst in Venice, at the top of St Marks Basillica, there was another Australian family with 4 girls, one of which had DS.  I did not have pity but absolute awe at the how organised this family was.  Far more organised than us & they had 4 gorgeous girls in tow.


Life is there to be lived.  Jules363, you are an inspiration.

anniesmum





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