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Carers UK Forum • Hello all - new parent carer
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Hello all - new parent carer

Posted: Mon Nov 30, 2015 9:06 pm
by Angela_151123
Hi all,

I'm new to the forum, in fact to any forum! I'm new to this caring malarky too, so hello all.

My baby son has significant emerging disabilities including blindness and motor problems. We are getting to know a whole new world of hospitals, social services, charities etc, etc. We are busy.

I suppose I'm hoping I'll learn something and get to know some people in the same position, albeit online.

What one piece of advice would you give to new carers?

Thanks x

Re: Hello all - new parent carer

Posted: Mon Nov 30, 2015 9:47 pm
by Elaine
Hi Angela
Way, way outside my experience, but just wanted to say welcome and I hope you find Mums in a similar position on this forum, who can give you some advice.
The one piece of advice which is common to all carers and reiterated many times on the forum, is that you must have some 'me' time. It is essential that you, and your husband, singularly and together, get some time each week to relax away from the stress of caring, just to recharge your batteries. It doesn't matter what it is. A visit to the hairdresser, an hour at a friend's house, a swim in the local pool, a lunch at the pub, anything that you can enjoy, in peace, for just a little while. Perhaps to start with you could each give each other some free time?
I'm so sorry to hear of your little one's problems. I hope you get all the professional and family help that you and the baby need and deserve.
I wish you all the very best.

Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 6:10 am
by lonewolf
Dear Angela

My son is now 5, he has a rare genetic disorder, a variety of disabilities including hearing and vision impairments, and has a tracheostomy (trachy) and is on a ventilator when asleep.

Being a new mum is tough enough without having the kinds of issues that our sons have. I hope you are getting enough rest. One thing I would say, is to take each day as it comes and don't necessarily allow your expectations to be limited by your son's diagnosis or by what the professionals say.


Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 9:20 am
by Angela_151123
Thanks both,

Elaine, taking time to do other things is definitely on our Christmas wish-lists. I think working out how to fit some exercise back into my life is going to be important. I just can't quite see how it's going to slot in - but I'll join the January crowds of people trying something new ;)

Thanks Emma. It sounds like our sons have a similar range of issues, certainly coming from the same kind of place. I hear what you say about not limiting expectations. I find that quite hard as the condition my son has is also very rare and there is no prognostic information about what happens from here. I have to accept he will make his own little way...but, boy is that hard! How do you manage it?

A x

Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 9:34 am
by pollyanna3
Hi Angela
Your post struck a cord with me! My beautiful daughter now 34 was born blind with a rare condition and other disabilities and I vividly remember those early days of diagnosis, hospital visits, physios, social services,e etc ....also the deep sadness.
I must admit I was quite a while before I contacted other parents in similar situations and when I did I found Contact a Family very helpful.. this is a national organisation. Also I seem to remember an organisation for young families with visually impairfed children called Look.
Most importantly look after yourself.

Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 11:46 am
by jenny lucas
Dear Angela

I would say this to you - as sensitively as sensitively as I can possibly manage (which may not be much or anything, but here goes):

The one thing I learnt with stark bitterness when my husband died of cancer was this: that while there is life there is hope, but when life has gone, then hope goes too.

The reason I say this is because although I know this can sound like the glibbest, 'cheapest' thing to say, please never ever give up hope that as medical science and treatments advance, that your child's condition may be ameliorated, perhaps perhaps perhaps even cured.....

I know that saying that can sound crass, and insensitive and glib and all the 'easy comforting things' that 'passers by' to you can mutter and murmur and then stroll on by thinking 'Oh, I think I helped that poor mum a little bit and now I can go happily back to my own comfortable life'.......and yet it remains true for all that.

Despair is the hardest thing to bear, the absence of hope of improvement, and that is why I say that while life remains, so hope remains. The future may not be as bleak or difficult or sad as it is now.

In that respect, therefore, one of the things that you may find sustains you in the time ahead is to get as much, much, much information as you can find about your child's condition, what the current state of research is (or needs to be!), and where it is taking place in the world, and who are the other parents in your situation, anywhere else in the world. I found, when my husband was diagnosed with terminal cancer, that trying to 'get a handle' on his disease, gave ME a sense of 'control' of 'fighting back' and that he wasn't just some 'passive victim of a deadly disease' but there were things we could do, and learn, and hope for, if not for himself, then for his fellow patients.

Wishing you all the best possible for the time ahead - kind regards, Jenny (and apologies if you think my post insensitive and glib, for it was not intended to be.....)

Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 9:43 pm
by Angela_151123
Hi Pollyanna, thanks for your message. It is really good to hear from someone who has been there too :) thanks for advice on Contact a Family, I'll look them up. I do feel sad sometimes, usually if I'm away from our son, or if I'm tired.

And Jenny, thank you too for such a heartfelt reply. I do usually feel hopeful. Just as you say, where there's life there's hope and there is so much love and life in our little man! We are trying to learn about his condition, it's hard as its so rare that very little is written, but it is on my to do list to contact one of the few UK based researchers in this area to check we have all the info we can get. Thanks for your warm words for us.

I'm feeling the fellowship from you all already! :D

Re: Hello all - new parent carer

Posted: Tue Dec 01, 2015 10:17 pm
by Scally
Contact a Family are good, and they work closely with Carers UK (as well as stealing some of our best staff, lol)
I take a more laid back, philosophical outlook on life than some people here. We are all destined to live and to die, we all have limitations and strengths, and of course, as parents we have a duty to help our kids make the most of their lives, regardless of ability or disability. Helen Keller's biography would be a good start, but there are plenty of other inspirational people out there who battled disability and still have a great life, and there are also many more people who touched our lives in much smaller ways - it is not the length of life, nor the reach of influence that counts, it is enjoying every day the best we can. Same goes for carers, really: we do have a responsibility to ourselves first and foremost, to stay strong and healthy, have fun, enjoy life, achieve our own potential.
And then one day we will get run over by a bus, and frankly, it won't matter any more.
Breathe in. Breathe out.

Re: Hello all - new parent carer

Posted: Wed Dec 02, 2015 7:20 am
by lonewolf
Dear Angela

To be honest, I'm not sure how we (my husband and I) have made it through these 5 years, and we've had some scares along the way. Once again, the only thing I can think to say is to take each day as it comes, try not to think too far ahead and follow your son's lead. He may or may not reach all his so-called milestones, but he'll do whatever he does in his own time. It's strange, but a number of professionals involved with him have said things like 'just think, we didn't think he'd do X, but now look at him'. But it didn't really occur to me that he might not sit up, stand, walk etc, I assumed perhaps naively that he would eventually :D . Also, the professionals don't know it all, especially with rare disorders like those of our sons. One ophthalmologist we saw at GOSH said, in as many words, that my son's vision was so poor that there was no point making any interventions. This completely devastated me, and went against what my husband and I felt. And our son has proved her wrong. He does have a visual impairment (as well as a hearing impairment), but he makes very good use of his vision. We are currently patching his left eye to strengthen his right eye and try to correct his squint. You'll be the experts in your son, you know him best so don't be fobbed off by professionals if you think they are wrong.

I would also say, that although there are some bad/inefficient professionals out there, there are good ones too. I've made it a policy to accept any help offered, at least on a trial basis as you can always decide you don't need them, but sometimes it's harder to get helper further down the line.

I hope you are getting all the health/social services support that you and your son are entitled to. Feel free to PM me.

All the best.


Re: Hello all - new parent carer

Posted: Wed Dec 02, 2015 11:35 am
by jenny lucas
Glad my post didn't upset or anger you - but I also have to say that Scally's post impressed me too. None of us gets 'perfect' lives and 'making the most of what we DO have' is essential for us to have any kind of happiness or peace of mind at all. I guess it's a question of finding that 'balance point' between 'accepting the situation and maximising the potential there is' and 'pressing for improvement'. One does not want to 'resign' oneself nor 'over-stress' on endlessly seeking 'cure' etc etc.

I agree with Emma about the medical professionals - they are a 'varied bunch' and I know from my time in Cancerworld that opinions and outlook can vary enormously amongst the experts, so, yes, dont' necessary 'accept' a 'negative' opinion, and if you find doctors who resonate emotionally with you and you are comfortable with, then that may well be the most important factor of all.

Wishing you all the best possible, Jenny