Welcome, why not introduce yourself?

sianwhite 2016-11-28 14:35:17 UTC #1

Welcome to FamilyHub, our brand new online community! I’m Siân, and I’m one of the people who look after FamilyHub. I’m here to help you, so just shout if you need anything.

Here are the guidelines to help you understand how to get involved with FamilyHub (including all the dos and don’ts). The guidelines are pretty handy so make sure to give them a read.

But, first things first. Introductions! I’ll start, shall I?

My name is Siân, I live in London and grew up in Bristol. I’ve worked at Mencap for two years and in my spare time I love reading and making jewellery.

Now it’s your turn! Introduce yourself and let us know a bit about you. Here are some questions to get you started:

What’s your name?
If you are a parent or family carer, tell us a bit about your loved one, if you want to
What are your hopes for the New Year, and what are you most looking forward to?

Again, a big welcome to FamilyHub. I really hope you enjoy using our brand new space where parents and carers can connect.

If you have any burning questions, fire away!

Siân

P.S. A handy tip to get you started... When you create a post, try to select the category it fits into best. This will help people find it. If you can't find a category that is relevant, please suggest one by emailing us: community@mencap.org.uk

Introduce myself

richard.deniese 2016-11-30 16:57:17 UTC #3

Hi,
My name is Richard. My twin sister, Collette, has Down's Syndrome. We were born London, but moved to Sussex at the age of 7. We are both 27 now. Collette is really excited that she has started a new job in a children's nursery one morning a week and is hoping after a successful trial to make this a full day in the new year. Fingers crossed!

sianwhite 2016-12-01 10:19:39 UTC #4

Hi Richard, welcome to FamilyHub!

Thanks for sharing a bit about you and Collette.

Did you see we have a siblings category? If you've got questions to ask or advice to offer, why not get stuck in there?

Welcome again!
Sian

KiddER 2016-12-02 12:22:55 UTC #5

Hi, I'm Raz and have an 18 month old boy and a 9 week old girl (who has DS). Our family are completely smitten with the new addition! She's amazing. We're in London and thought I'd join here so we can get a taste of some of the challenges which may lie ahead for us.

I've developed a bit of a bee in my bonnet about the negative language used by healthcare professionals (did we have any 'warning' about DS, was I 'high risk', would i screen a future pregnancy etc etc). Maybe that's my ignorance about DS? I think it's just plain rude when talking about people who happen to have DS though. Rant over!

This seems like a great space to share experiences so thanks for setting it up!

Raz

sianwhite 2016-12-02 14:52:33 UTC #6

Hi Raz, welcome! Congratulations on your new little girl!

Feel free to take a look around, start a new conversation, or just have a chat. It's great to have you here!

Jasperlad007 2016-12-02 18:35:46 UTC #7

Hello,

My name is Paul. I am the father and parent carer (with my wife) of our 30 year old son. Now while I realise our son is now an adult, his learning disability did not vanish when he passed 18 and we feel now, that we have much we can offer by way of our experiences, but also we are hungry for information. Our son has only this year been diagnosed with having Autism as well as multiple other conditions which have complicated his early year development and in many ways we are having to engage our son as if we would have many years ago.

I guess we are looking to be an activist in getting people to understand that conditions we all face, do not end when the individual pass 18 or 21 or 25, they are life long and need good effective support to integrate into the world around us.

I hope you don't mind me being here, and hopefully we can share valuable lessons that will help us both.

Best regards

Paul

Ands1 2016-12-06 14:28:38 UTC #8

Hi. My name is Angela and I have 4 children, one of them a son with severe learning difficulties.

He is one of a twin and now as a teenager (aged 14 and a strapping 6ft 2!), the differences in him and his peers are very pronounced and lead to a lot of angst especially as his twin does not have his challenges.

He was not diagnosed with LD's until he was 11 as he was written off as 'naughty' and 'not willing to learn' early on. It has taken a 6 year battle to get a diagnosis and an EHC Plan.

I am very interested to talking to other parents of teenagers/adults with LD's, such as Paul above, to get tips on how to support him, especially into whatever small amount of independence we can help him into, so he can live his life as fully as possible.

sianwhite 2016-12-07 14:07:21 UTC #9

Hi Paul, welcome to FamilyHub!

Thanks very much for joining us and sharing your story.

We have a category for parents of adults with a learning disability. As FamilyHub is so new, there aren't any threads in there yet, but feel free to start a discussion!

Thanks again Paul!
Sian

sianwhite 2016-12-07 14:11:08 UTC #10

Hi Angela, thank you for joining us on FamilyHub! I hope you find it a useful community

We have a category for parents of teenagers with a learning disability - why not start a discussion with some of your questions? There will be lots of parents out there with information and stories to share.

Thanks again Angela!
Sian

MazzyM 2016-12-07 16:21:32 UTC #11

Hello
My Name is Marion and I am mum to Robert who has duplication of chromosome 15. He has severe learning difficulties and epilepsy. He is 22.

sianwhite 2016-12-07 16:40:58 UTC #12

Welcome, Marion! Thank you for joining FamilyHub.

If you've got questions to ask or stories to share, feel free to start a discussion in one of our categories - there are lots to choose from

Thanks,
Sian

steve_downs_dad_uk 2016-12-07 19:26:59 UTC #13

Hi Richard. My last podcast was for the dads. https://soundcloud.com/user-646683117/downs-with-the-kids-episode-3-the-dads

steve_downs_dad_uk 2016-12-07 19:29:06 UTC #14

Hi there. Steve here. My son Stan is nearly fifteen and for much of that time I've been documenting his life. http://downswiththekids.blogspot.co.uk/ - Always happy to speak to other parents.

sianwhite 2016-12-08 08:33:18 UTC #15

Hi Steve, welcome to FamilyHub!

Thanks so much for joining and for sharing your blog - I look forward to giving it a read!

If you've got any questions, fire away!

Sian

craigmason1971 2016-12-08 09:58:41 UTC #16

hi my name is craig i am a adult with aspbergers i am currently looking for work but having no luck so far

sianwhite 2016-12-08 10:23:24 UTC #17

Welcome to FamilyHub, Craig!

We've got some information on our website about our employment services, you can take a look here. I hope you find it helpful!

Thanks,
Sian

SylviaW 2016-12-08 13:39:00 UTC #18

Hello, my name is Sylvia and I am the mother and main carer of my 42 yr old son Nicholas who has a severe learning disability. Nicholas was born in Berkshire, diagnosed at 19 months then when he was 9 we moved up to Staffordshire with my husband's job and lived there for 33 years with our 3 other sons. Last year we made the big move back down south to Suffolk which Nicholas took all in his stride and very happily settled. I am looking forward to exploring more in this lovely county.

sianwhite 2016-12-08 14:29:04 UTC #19

Hi Sylvia, welcome to FamilyHub!

Your move sounds lovely, really glad Nicholas settled into it well.

We have a category for parents of adult children with a learning disability. If you have questions to ask or stories to share, why not start a discussion?

I hope you enjoy exploring FamilyHub (and Suffolk!)

Sian

richard.deniese 2016-12-09 12:16:45 UTC #21

Thanks Steve I will check it out

Alex_Donohue 2016-12-09 16:41:23 UTC #22

Hi everyone,

This is my first post in the FamilyHub community – it's great to see it so active already!

I work in the Digital team at Mencap, where I co-manage the Mencap website. I’m passionate about digital being inclusive for people with a learning disability. The internet is a huge part of our lives now, and it should be a safe and supportive environment for everyone.

My personal connection to learning disability began long before I joined Mencap. When I was at secondary school, I had a close friend who had (and still has) an older brother with a learning disability. Though we didn’t all go to the same school, we’d spend many summers together in our hometown playing cricket and pool.

A fairly relatable experience you might say, but what’s maybe slightly surprising is that I have no memory of ever seeing my friend’s brother (who, I should point out, is also my friend!) being bullied for having a learning disability when we were growing up. Sadly, this wasn’t always the case for other children with a learning disability at the secondary school I went to.

I think attitudes of people towards anyone who’s deemed to be ‘different’ (whatever that means) begin at an early age, and they shape our experiences as adults – for better or worse. I feel fortunate for being able to understand what a learning disability is from a fairly young age.

I look forward to reading more of people’s stories and experiences on here in the future!

FamilyHub

Welcome to FamilyHub. We're all here because we care about learning disability. Some of us will have questions, and most of us will have stories to share.

Take a look around, have a nosey, start a conversation. This is your community.