Patronising professionals?

[Caezzybe]

I wondered if anyone else has come up against health professionals being patronising towards them because they have a child with a disability.

I'm sure that my health visitor thinks I'm in denial about my child's Down's Syndrome, but that is so far from the truth. She treats me with what appears to be pity and asks if I'm OK every time I see her, so I say I'm fine and my child is doing well. Then she says, "but are YOU doing OK?". Why should I not be?

I had a bad day at the GP surgery as it was the first week I had seen other people's "normal" children since my baby was born. I burst into tears in the GP's office, but told her why and said I was usually strong and absolutely fine, but it reminded me that my baby would have problems that others won't have to deal with. She asked me to go back in 3 weeks to check for my son's apparently undescended testicle (which I had seen) and then when I went back 3 weeks later (and she found it) she wants to see him again in another 3 weeks "just to check it's still descending". I'm convinced she thinks I have PND and is actually checking on me rather than my little boy - I don't have PND and was absolutely fine at the last appointment. I suspect she thinks I'm in denial as well.

Now here's the funny thing, I'm NOT in denial I'm in complete acceptance of the situation and have my eyes wide open. I know my son has a disability and will have health issues. I know he will have learning difficulties and will almost certainly take longer than other children to achieve his milestones. However, I have embraced this reality and know I can't change it. I love him unconditionally and know that I will give him the best life I can, despite any setbacks life may throw our way. At least his paediatrician knows that I genuinely feel like this and am doing all I can - so why does everyone else I come across in the world of healthcare seem to disbelieve me? I'm scared to turn down offers of baby groups and classes in case they see it as a sign that I'm unable to cope (when in reality I'd like to spend more time at home doing things like counting, alphabet flash cards, signing, songs and cuddles with my little man).

Is it just me or has anyone else had to put up with this sort of nonsense?

 

[Midnight_Fairy]

Hi, I have not had to put up with it in the same was as you but when people find out my son has autism they assume I cant cope and put pity on me. I dont want pity, do you know what I mean?

Sorry I cant help more but feel free to have a vent here. I hope your ok xxx

 

[midori1999]

What makes you think the fact your son has Downs is even relevant? Wouldn't a HV ask any new mother if they are OK? If they are coping? Having a baby can be hard work and if it's a first baby, not all are prepared for it.

As for the GP, maybe she just wants to make sure? Far better see someone a couple of extra times for no reason than leave a woman with undiagnosed PND.

It's hard not to be over-sensitive about these things, and yes, some people and some health professionals are patronising (ony a couple of weeks ago a midwife scanning me said 'sorry' when I mentioned my son had Downs, I just told her no need to be) but try not to take it to heart. Considering how many ladies choose not to continue a pregnancy because their baby has Downs, for some, it would be a pretty big deal to find out their newborn had Downs.

 

[indy and lara]

When I was PG the mw was watching me like a hawk because I was at high risk of pnd/ pre natal depression because of the death of our son. This continued after Emma was born and the hv put me on an enhanced post natal check. The thing was that I was fine and I knew I would be but they didn't know this. They were really just doing their job.

On the other hand a friend from my antenatal group had a little boy who was diagnosed with Downs at birth. She saw her hv once and they just left her to get on with it really. The support she should have been given was just not there.

While it can be irritating to feel they are watching you, try to look upon it as them doing their job. So often we complain about the medical profession being neglectful but this just seems like an example of people really watching out for you.

 

[kelzyboo]

Glad your doing well, think they just want to make sure that your ok so that they can give you the right help and support, something they should do for all new mothers! Perhaps you are a little sensitive that people will think you can't cope but don't worry you sound like your doing a great job and its good to know that the support is there if ever you needed it. Everybody needs a little help at some point in their lives, not just mother's of children with special needs. Never feel ashamed to ask for help if you feel you need it, if you don't need it then thats great and i wish you and your little boy the best of luck x x

 

[Emmea12uk]

I can see your frustration - but you need to understand a little more about the hv's job. She is responsible for making sure you have all the support you need. She may be a little overbearing about it, but it is her job. Since baby p - they have to watch you like a hawk and assess your mental health.

It took me a year after my son's birth to even start to come to realise that I was struggling emotionally - physically I was fine, but I had needed to be strong to get through the days, so much so that I wasn't even feeling my own anxieties and pains. You may not even be aware how you feel right now. You can be the last person to know you need support.

Having a disabled child is really tough - not many people sail through it, so it is understandable that people are concerned. You might feel fine now, but that can change at any time. I know my limit is a solid line, one side of it I am great, the other side I crumble. I have no idea that line is coming until I suddenly burst.

In the end I got so much comfort from my hv and all the groups etc I go to. Maybe not so much the mainstream, but the disabled groups were great.

 

[Aidan's Mummy]

Whilst I can understand it's frustrating. They are only doing their job. She is looking out for you and your son and has your best interests at heart. If the doctor thought you had PND she would tell you hun.

You are being offered amazing support. That's all their trying to do hun, support you
xx

 

[angelstardust]

And I know its frustrating, but it is better for them to ask than for them to completely ignore your feelings.

You also tend to find that us mums get by the first while on pure adreneline and feel fine at first, then one day it does hit us hard. And usually over something silly.

Please don't take this the wrong way, but this stage is easy. It's once he should be walking and talking and should be doing bla bla bla... that it gets harder.

But you sound like you are doing great, and your little boy is gorgeous! `

 

[Lottie86]

It's once he should be walking and talking and should be doing bla bla bla... that it gets harder. `

^^WSS. It will hit a lot harder as Logan gets older. I have been pretty much fine (of course with bad days here and there) but on Friday I saw a little girl from a few doors down running around and playing in the snow and chatting away and then it hit me, she's the same age as Findlay, I really could have about it.

 

[Tegans Mama]

It's once he should be walking and talking and should be doing bla bla bla... that it gets harder. `

^^WSS. It will hit a lot harder as Logan gets older. I have been pretty much fine (of course with bad days here and there) but on Friday I saw a little girl from a few doors down running around and playing in the snow and chatting away and then it hit me, she's the same age as Findlay, I really could have about it.

This is really, really true.

I cope pretty well with Tegan's Spina Bifida - the overall having a disabled child is not what bothers me. The only thing I can say REALLY does is the fact that she cannot, and never will, walk. It makes me cry just to think about it, even now, and she is 27 months old. I even get angry when I see other kids walking around sometimes, thinking it should be Tegan.

I was fine until she reached a year old. Exactly a year. When my friends were buying trikes and little scooters for their one year olds, I was stuck for what to get her and the anger started to build. I have days even know when I feel like telling people to get lost if they start telling me about how well their baby is doing with walking. You might be surprised how differently you feel once your LO is older and it starts to really sink in.

 

[angelstardust]

It's once he should be walking and talking and should be doing bla bla bla... that it gets harder. `

^^WSS. It will hit a lot harder as Logan gets older. I have been pretty much fine (of course with bad days here and there) but on Friday I saw a little girl from a few doors down running around and playing in the snow and chatting away and then it hit me, she's the same age as Findlay, I really could have about it.

This is really, really true.

I cope pretty well with Tegan's Spina Bifida - the overall having a disabled child is not what bothers me. The only thing I can say REALLY does is the fact that she cannot, and never will, walk. It makes me cry just to think about it, even now, and she is 27 months old. I even get angry when I see other kids walking around sometimes, thinking it should be Tegan.

I was fine until she reached a year old. Exactly a year. When my friends were buying trikes and little scooters for their one year olds, I was stuck for what to get her and the anger started to build. I have days even know when I feel like telling people to get lost if they start telling me about how well their baby is doing with walking. You might be surprised how differently you feel once your LO is older and it starts to really sink in.

We had friends with a little boy the same age as DS2. Knowing all about DS2 and that we had been told he might not walk, they started calling us almost every night to ask if he was walking yet because their lo was walking and crawling and running and doing the full river dance...

Eventually at 22months, 3 weeks and 4 days old he did walk. Obviously we called EVERYONE to tell them as it was such a huge thing. Those friends said 'oh right, yer, lo has been doing that for months now... did we tell you that he can say dictionary?'

They were dropped just after that.

Some folk just don't have any sensitivity at all. It was HARD seeing other children doing things and DS2 still not even sitting up. But we managed to put on a brave face. But thats what we do, put on a brave face and get on with it. Because at the end of the day, their children will walk and they will be happy. Our children will just do some small little thing and we are ecstatic! And they will never know that feeling, they think they do, but they don't. I was happy with DD walked but it was nothing compared to how I felt when DS2 did it. And I'm not ashamed to admit that.

 

[Midnight_Fairy]

My son has autism, so bit different to physical disibilitys but all the same in other ways. I agree with Tegans mama that I do get on with it but sometimes I see other children his age and feel sad. Its not that I dont love him (I love him more than I could ever describe and thats just how he is etc etc) but it does hit me some days, maybe more if I am feeling low. I guess the main issue is that I talk about things that annoy or upset me now and that makes it easier. Maybe the HV is just checking you are not holding it in x

 

[jessr123]

I kind of understand where you are coming from. I saw a specialist health visitor yesterday and she really riled me. Talked to me as if I was the one with special needs, and kept aiming her questions at my mom (who had come to look after my eldest), instead of at me. Hello, I am an intelligent woman, and they are MY children. I am going to address this issue with her next time I see her.

 

[Emmea12uk]

Sorry, if a hv spoke to me like that, I'd say something too

 

[Newt]

It's once he should be walking and talking and should be doing bla bla bla... that it gets harder. `

^^WSS. It will hit a lot harder as Logan gets older. I have been pretty much fine (of course with bad days here and there) but on Friday I saw a little girl from a few doors down running around and playing in the snow and chatting away and then it hit me, she's the same age as Findlay, I really could have about it.

Same here, i am mostly ok but then I may see another child doing things that Oscar doesnt and I bounce it around in my mind for days and usualy cry too. I was in town one day and a little girl, younger than oscar reached out for me, looked me in the eye and showed me here toy while saying 'lady'.
It devistated me for days

I think you need to trust your professionals a bit, try to build a good working relationship with them and they will be there for you in future, you will need them, if not for yourself for you little one (gorgeous, by the way), there will be health, educational financial support they can help you with all sorts