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Hello all - new parent carer - Page 2 - Carers UK Forum

Hello all - new parent carer

Tell us a bit about yourself here.
Angela_151123 wrote: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
Hugs, Angela. My son's 13, has epilepsy, learning difficulties and autism. I can't condense everything I've learnt over the years into one piece of advice! But to try and be as brief as possible:
1 I've found other parents a far, far better source of information than professionals so chit chat as much as you can - it doesn't matter whether your children have the same condition or not as a lot of things are universal and will apply regardless of your child's diagnosis.

2 In the same vein, don't assume professionals always give you the correct information. Ask for clarification if you need it, seek a second opinion if you want to, read as much as you can - I found knowledge about my son's difficulties really helped me to help him.

3 Try and hang on to something of you. Life can become a whirlpool of appointments, letters, phone calls, forms and other things that aren't a lot of fun. Try and hang on to something that you love - a band you follow, cinema trips, gardening, whatever it is that you really enjoy and that makes you feel like you.

4 Try not to sweat the small stuff. Let minor things go, look at the bigger picture, you'll find what matters in your life changes and I found that hard to deal with at first but your priorities will shift and letting go of stuff that doesn't really matter makes it easier to concentrate on what does.

5 Savour those little moments with your boy. We've been through some tough, tough times and there were plenty of times I wanted to run and I didn't think I'd ever get through it. But I look back and I can remember him snuggling down into my arms when he was a baby, climbing in 'the nest' (I'd sit cross legged on the floor and he'd squeeze himself into the gap and sit there reading a book), the look on his face the first time his bare feet ever walked on grass, the look on my face when he finally started talking after years of not being able to, there are so many things that are lovely for any parent but when you have a child who 'might' not be able to do certain things it makes the things they can do so much more incredible and those are the moments to hang on to when things are tough.
Thanks Jenny and Scally, Emma I have PM'd you.

We have had a good day today with our son trying to make a bit of progress in trying to eat. Hurray!

He does teach me how to value the little things sometimes :D that's when I'm in a good place!

A x
A very sane, wise post from MwC......

Angela, one thing I promise you, ALL babies teach us to value SLEEP !!!!!!!!!!!!!! :) :) :)

Wishing you and your precious little one well - kindest regards, Jenny
Hi Angela,

You've got some great advice here! I also wanted to let you know how much your post reminded me of Dawn, who was on the front cover of our latest issue of Caring magazine: http://www.joomag.com/magazine/caring-m ... 1443796120

Dawn's twins were born at 26 weeks, thrusting her prematurely into the role as mother and, ultimately, carer. We interviewed her for the magazine, and also included a letter she wrote to herself five years, which we found on her blog. You can read that here: http://compassionatecarer.blogspot.co.u ... chive.html

Dawn shares some really honest and raw reflections on what the first five years were like - the struggles and the joy her children have brought her. Well worth a read!

All the best,
Kate
My advice to you would be ..... You know your child better than anybody else! Don't let the professionals fob you off. Don't sit back and wait for things to happen. If somebody says they'll get back to you and they don't then get on to them again.

I know Scally means well and he is entitled to his opinion and is very, very well informed on caring issues. However, I know several people who have kids and young adults with Down's syndrome and they are all very easy to get along with. My closest friend has a daughter in her 20s with DS and she plans all her week for her and the daughter is happy to do whatever Mum thinks. They never have a cross word and it's very easy for her to enjoy life with her daughter because she is easygoing and biddable.
If you have a child who, due to learning disabilities or ASD, is rude and hurtful to you pretty much of the time then it's not so easy to just go with the flow and accept that this is your lot in life.

Anyway, back to you ..... If you have other family members who can help out, let them because you do need some "me time." Let us know how you go on. X
there is a lot of help out there bUT finding our about how and where to get this help is the problem. So get hold of as much info as you can from the various Agencies and thru pamphlets. Join Carers groups as then you can be made aware of just what is ` out there.`
Dear Angela

Thank you for your PM. I have tried twice to send you a reply (the same one), but both copies are sitting in my outbox, and I'm not sure how to get them to send properly. I didn't want you to think I've been ignoring you.

Emma
Emma_1507123 wrote:Dear Angela

Thank you for your PM. I have tried twice to send you a reply (the same one), but both copies are sitting in my outbox, and I'm not sure how to get them to send properly. I didn't want you to think I've been ignoring you.

Emma
Hi Emma,

In the forum, private messages sit in the outbox until the person you have sent it to has read it. So the message will have gone through, and once Angela logs in she'll be able to read it and it will move to your sent messages folder.

Hope that helps!

Kate
Many thanks for clarifying that for me, Kate. Wouldn't it make more sense then to label the 'sent' folder as 'read' or 'received'?
Emma_1507123 wrote:Many thanks for clarifying that for me, Kate. Wouldn't it make more sense then to label the 'sent' folder as 'read' or 'received'?
I agree with you! Although I'm not sure we can change it - we use off-the-shelf forum software and a lot of this stuff is pre-set. I will make a note of this though and see if we can make it clearer in the future.