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MumsnetGuestPosts (MNHQ) Tue 09-Jun-15 13:41:03

Guest post: SWAN UK - "As parent carers, knowing somebody cares for you too is a lifeline"

It's Giving Week at MNHQ, and we're going to be hearing from each of the five charities chosen by you. Today, it's SWAN UK, the only dedicated support organisation for families of children with undiagnosed genetic conditions. Do give what you can, and Mumsnet will match your donations to a total of £25,000!

Share this on Facebook, and tweet using the hashtag #MNGiving to help us spread the word.

Helen Piper

SWAN UK

Posted on: Tue 09-Jun-15 13:41:03

(5 comments )

Lead photo

"We all support each other, as only people who are in the same situation can."

The moment our son was born I became a Parent Carer. I didn't realise it at the time, and what followed were many denial-filled months.

I was also mother to my 9-year-old daughter, wife to my husband and employee to my employer, but it was 'Parent Carer' that would and still does define me. Much as I'd like to say otherwise, it is my beautiful, soon-to-be five-year-old son who, more than any other aspect of my life, affects and influences the choices and decisions I make every day. For Alex cannot walk and cannot talk and has extremely delayed development in all areas.

"Do you want to come out tonight?"
"But who will look after Alex?"

"Shall we go to the park Mummy?"
"Will Alex be able to come and have fun too?"

"Have you ever thought about working full time?"
"I don't think that would work."

I try not to be begrudging, and most of the time I succeed. Because he is my son. Because he is gorgeous, cheeky and a delight to be around. Because I love him. But it is exhausting. Of course, being a parent is exhausting for everyone, but adding an extra caring layer can tip you over the edge. In an already busy life of children, school and work, I'm also trying to chase up appointments with hospitals and doctors, and squeeze extra minutes into all activities so that Alex has time to eat, and get dressed. All the while, I try desperately not to think too much about the future, because that's when my head explodes.

Will he ever be able to walk?
How will we move him around when he gets too big?
Will we always be able to accommodate him in our lives? What happens if we can't?

These are not questions I ever think about our daughter, Emma. Those are much easier:

We felt that surely, no-one could understand, and no-one could help. People reached out and we pushed them away. It was a very lonely, very scary time, and we couldn't keep it up.


Should she really be playing on the IPad so much?’
Surely that's enough Taylor Swift now?
Isn't it time for bed?

I'm only able to keep going because I can share the load. Back at the start - during the dark time when we were realising that Alex was going to be a child with complex additional needs - we worried about all the possible outcomes for us, both as individuals and as a family. We felt too much pain, and too much guilt, to share him with anyone. This was something we had to deal with by ourselves, we felt that surely, no-one could understand, and no-one could help. People reached out and we pushed them away. It was a very lonely, very scary time, and we couldn't keep it up.

Slowly, we let people in. It was our Health Visitor who provided that first, all important, lifeline - some funding for a nursery place. Alex was a "child in crisis", and looking back, it seems obvious: he was stuck at home with us, being ferried between the school run and hospital appointments, and his only visitors were the Physio and Occupational Therapists. It wasn't right for a little boy.

After much searching, we managed to find a nursery that was positive about us placing him with them. And so he thrived. Alex turned from a quiet, unresponsive little boy, scared of loud noises, frightened of babies crying, into a robust, outgoing, inquisitive one. They took him on and advocated for him. He had specialist seating, standing frames, and trips to sensory rooms. They recognised his needs and they met them. We will be forever grateful.

And us? We began to breathe again. We were able to re-group, and build ourselves a new life – not one we had anticipated, but one that would work for him and for all of us. We had the time and space to create a different family unit.

Our support base is broad because our caring needs are great. It ranges from the obvious (therapists, charities who fund his equipment, his nursery and then his school) to the not so obvious, but equally important - the children who say “hi” to Alex in the street, the people who ask us how we are doing, and who don't forget to include us and him as much as they can in their lives. And SWAN UK. I can never fully express what a wonderful support they are. When we found out that Alex an undiagnosed syndrome and we had no idea where to turn, SWAN UK brought us together with other parents, all of them in the same boat, and we all supported each other, as only people who are in the same situation can.

This week is Carer's Week. It's an annual campaign to raise awareness of caring. 1 in 10 of us is a carer in one form or another. Whether it be an ageing parent, a terminally ill or a disabled child, we all do it. Many more of us will come to it later in life, too, so it's important to remember what support is required in order to keep on caring. It is beyond a challenge sometimes, but often, just knowing that other people care about us too is what stops us falling to pieces.

By Helen Piper

Twitter: @SWAN_UK

coffeeisnectar Tue 09-Jun-15 14:37:53

I recognise your name, probably through Facebook either from another SWAN parent or from the SWAN page. I'm not a SWAN parent but do support SWAN UK and follow the page, as well as being friends with a lot of parents with SWANs.

I loved reading your post. All of the parents I know are cheerful and positive and focus as much as possible on the positives, the small steps their children have made which are actually massive given the obstacles they face and I cheer along with them when a child has achieved something they were told would never happen.

But I've also sat in a field and listened to them listing long lists of appointments and the endless merry go round of hospitals, doctors, physio etc and that they wish it could just stop. And my heart aches for the weariness and exhaustion they are living with all the time.

And I'm so happy that I nominated SWAN UK and that mumsnet chose it as one of their charities this year.

ProbablyMe Tue 09-Jun-15 15:09:46

I'm so pleased that you've got the support that you need. I've had a different experience though - my son has a named, though rare, syndrome (Prune Belly Syndrome). It's not well known and doesn't attract attention like so either conditions do and I often feel like the world doesn't care. The only support group is in the U.S. I would love to have someone say "it's crap, but you're not alone" but he's nearly 12 now and I'm still waiting. I've lost my career, lost friends and sometimes it's hard to keep my chin up.

ProbablyMe Tue 09-Jun-15 15:10:13

*some other

2boysnamedR Wed 10-Jun-15 00:12:31

My son has a unique genetic condition. It's charities like these that make you realise it's not just you. Although no one has the same condition there's a lot of people on the same journey

Springtimemama Wed 10-Jun-15 07:28:44

Message withdrawn at poster's request.

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