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Mothers of kids with special needs?

  1. #1
    nicolejoy's Avatar
    nicolejoy is offline Registered User
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    Mothers of kids with special needs?

    I'm currently expecting my 2nd child (actually today is my due date) and we found out earlier in the pregnancy that she had skeletal dysplasia - which is a generic term for deformities of her skeleton. At the time they told us she had a high chance of not surviving - although in later scans etc we found out that it appears to be a form of dwarfism. Although physically she will be different, mentally and all that she will be "normal". Life span is normal, quality of life is fine etc... there are going to be obstacles of course, surgeries from a young age, frequent doctors visits (she already has her first visit with the geneticist lined up, and she's not even born yet...), and in order for her to live her daily life, she will need things adapted for her unique body shape...

    I'm wondering if any other mums over here have kids with special needs - I know probably it'll be hard to find other mums with kids with dwarfism, but any kinds of special needs... How do you find society in Hong Kong with those special needs? Are people understanding and accommodating? What about the doctors - are they pretty good? Our regular GP has already asked us "why did they allow us to continue with the pregnancy"... What about schools etc?

    Just looking for someone who has in some way "been there done that" and can give me a bit of an idea of what to expect in terms of HK society... I've made some great contacts online with parents who already have children with similar conditions to our daughter - but most of them are in the US and society there is so different to here...

    Thanks in advance :)

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    pipinhk is offline Registered User
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    Hi Nicole

    We arrived in HK when our daughter was 10 months old. She has Down's Syndrome, albiet mildly affected she still takes a little bit of extra time to do things and does require some extra help to progress.

    It felt a bit daunting when we first entered the 'system' and it still feels a little bit complicated but once you make contact people are genuinely helpful and caring. I can't speak for medical professionals because we are fortunate enough that our little girl does not suffer any health issues but the 'practical' professionals have all been outstanding. There are basically 2 English speaking options for children with Special needs in HK, The Child Development Centre at Matilda and Watchdog which is near The Peak and In Jordan, we opted for Watchdog because the trip to Matilda was too far and we are there 3 times a week.

    You can get Governement funding and the process seems a little long winded and I was asked to complete a questionnaire (about me even though is was for my daughter's funding?) which included questions on whether I had ever felt suicidal or homicidal, but I found it was just easier to go with the flow unless there was something I really wasn't sure about.

    Your Pediatrician will be able to help you with the first steps.

    I know your little one's needs are different to our's but be reassured that there is support in HK and you will find it in some unexpected places.

    Best wishes for a speedy and safe birth!

    xx

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    nicolejoy's Avatar
    nicolejoy is offline Registered User
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    Thanks Pip, it's so nice to hear such a positive experience. I've been kind of dreading "the system" here, and also the reactions of the people we know... Some (especially locals) don't seem like they would deal with differences very well. My husband and I have been here for going on 4 years now and planned on staying for another probably 5 years or even longer, although in some ways I feel like this MAY make us want to go home sooner... I think it would be "easier" in our home country (Australia).

    How old is your daughter now? And do you have other children too?

    Also what pediatrician do you go to? Do you go to one who specifically has experience with special needs?

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    pipinhk is offline Registered User
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    Hi Nicole

    Pip is 2, she's the only one at the moment, too much fun with her be thinking about more just now.

    I have only been to the pediatrician once, and it was so long ago I don't actually remember her name! For everything else we just go to the local GP, but as we've only ever been for vaccinations I can't even really comment about their care, other than everyone we have spoken to have been very good and professional.

    From our experience when Pippa was born we first came in to contact with a Neonatologist (the nicest man I have ever met) but this was back in the UK. He gave immediate post natal support but after a few weeks we saw a pediatrician (again, UK so allocated by the NHS), but even that was just a home visit to see how we were feeling.

    I would start with your Obestetrician, they should be able to help you find a suitable pediatrician.

    We have always found that the best thing to do is ask, ask, ask, no one thinks you're stupid, a lot of the time it makes perfect sense to everyone else but not you because you're the ones trying to take everything in all at once, and there will be a lot to take in! After a while it all just seems like normal, and you can't even imagine what all the fuss was about.

    Be aware that you will get a lot of 'sympathy' from friends and family. It's unintended but people do it without really thinking how they come across. I distinctly remember a voicemail from a family member where they were practically in tears and sounded like someone had died. Try not to let these things get to you, it really isn't what people mean, but sometimes they just don't know how to react. You don't have to be a super mum and defend your daughter, she's born this way and she will do the very best she can with all the love and support from the people around her and that's the main thing to remember, she's yours and you wouldn't change her for the world.

    Having a child with special needs might seem daunting to those who have never experienced it but when you're the one who goes to bed and wakes up with that child, it's just life, and you love every minute of it.

    A x

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    nicolejoy's Avatar
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    This daughter is my 2nd, and I have noticed that friends and family have treated this pregnancy SO much differently to my first. I think part of it MAY be because our first daughter (21 months old) was the first grandchild on both sides of the family - but I also feel like there is a bit less excitement due to the complications in this pregnancy too - maybe that's just me being super-sensitive though...

    I'm currently only seeing the public doctors/public hospitals here - I started out private but ended up being referred to the public, it seems that a lot of the top doctors/specialists are there when it comes to rare conditions... but the downside of that is that they are a lot less accessible as well, I feel...

    I've done so much research, so much so that even the doctors have commented on how well informed I am. I need to be though because I know that as her mother, I'm her advocate in the medical world.

    It's definitely daunting - I don't think that ANYONE thinks in advance that something like this will affect their family... particularly when there's no family history or anything like that... I feel more like a "first time mum" this time around than when my first was born! I feel like I have no clue what to expect and all that...

    Have you found any "support groups" over here? It seems like other countries have a lot of support networks for things like this, but HK doesn't seem to have so many, just from my initial searchings...

    Also, in your previous post you mentioned CDC and Watchdog - are they just for children with specific learning delays, or would it apply in our situation as well? Our daughter will probably have physical developmental delays (walking, crawling etc) but not so much mental/learning etc...

    Thanks so much :)

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