Tag Archives: complex needs

We were offered a termination. No one ever said: “He’ll bring you joy every day” – #100days100stories

Guest post by Alexandra from Dunbar. Alex’s second child, one-year-old Benjamin, has very complex needs which were discovered before he was born. She writes a blog, and shares her story with us as part of Scope’s 100 Days, 100 Stories project.

We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child.

Alex's son Benjamin at two days old
Benjamin at two days old

Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple. There were big holes in the middle and smooth surfaces where there should be intricate folds.

He may not breathe on his own, they said. He would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk.

Benjamin in blue jumperWhile we weren’t pushed towards terminating the pregnancy, if we wanted to, the papers could be signed there and then.

We went home to think it over. We returned to the consultant again and again, we spoke to friends, relatives, counsellors, we scoured the internet.

A weekend turned into a week as we considered the implications for our baby – his likely suffering, his quality of life – for ourselves, and for our 21-month old daughter, Jackie.

I know it was the doctors’ responsibility to prepare us for the worst. But no one, no one, said: “There’s a chance he might be happy. There’s a chance you might still be able to do the things you wanted, just with a little more planning. There’s a chance he might enrich your lives in ways you never imagined.”

Our adorable son, Benjamin, is now one year old, and he has changed our lives for the better in so many ways.

Benjamin and his sister Jackie in Santa hats
Benjamin’s first Christmas with his sister Jackie

We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike rides, bought a big old house on the coast, been abroad on holiday. My husband and I are closer than ever. I have learned that life is not so much about principles – it’s about caring.

We met some amazing people – mothers, fathers, grandparents, carers– fighting for their children, fighting to make their world a better place, sharing everything they have.

Benjy’s big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not! He’s the first thing she asks for when she wakes up in the morning.

Benjamin with his mum Alex
Benjamin today

Our son is a contented, even joyful, little boy and aside from his disabilities, he is healthy.

Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet – things may, and probably will, get harder.

But I firmly believe that Benjamin will continue to brighten our lives every day. He proves that there is another realm of possibility outside the grim, medical, worst case scenario.

Find out more about the 100 Days, 100 Stories project, and read the rest of the stories so far.

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.


10 tips for a stress-free day out this half-term

Netbuddy have created a fantastic pack full of tried and tested tips from parents and carers who are supporting children and adults with complex needs this half-term. Here are just 10 of the great tips from the pack:

  1. Prep for outings – When attempting a new activity or outing, e.g. horseriding, theme park etc., prepare in advance by showing pictures, books, leaflets & talking about it. We have found YouTube invaluable as most venues & activities are in video form. Also many attractions have apps you can use.
  2. Take a camera – We went to Nymans Gardens recently and my son Toby walked so quickly that we couldn’t enjoy the beautiful surroundings. In his head, a walk means a walk to somewhere. Half way round we gave him our digital camera and he slowed down to take loads of photos. We will now always take a spare camera with us!
  3. Separate outings bag – I keep a separate outings bag always packed and ready to go with a change of clothes, pads and wipes etc. I just need to add snacks and off so then I’m not flying around at the last minute when going out.
  4. Reserve a parking spot – Lots of places have reserved disabled parking in their staff car parks. Phone ahead and try and book yourself a spot.
  5. Just ask! – Most attractions offer disabled discounts, special access, carers-go-free solutions, but carers often don’t ask for it. Please do ask whenever you are visiting any facility as it can save you a small fortune.
  6. Remembering days out Make it easier to communicate about days out – use a camcorder or camera phone and scrapbook to record special moments that you can look at together at the end of the day. Use a scrapbook to tell other people about favourite days out.
  7. Planning ahead – I think it’s important to always have little snacks and toys when you go on an outing. John loves his special Mary Poppins back pack where we keep his favourite things which I use to comfort and calm him if it all becomes too stressful or noisy for him. I put in his Nintendo, a toy, a book, drink, snack/treat and also a walkman so he can listen to a story or music.
  8. Transporting medication – If we are going to be out of the house when my son’s evening meds are due, instead of taking the bottles with us, we measure the meds out in a syringe and pop them in one of his old glasses cases to transport them (it holds 2 syringes perfectly!)
  9. Radar key – Get a radar key. These cost just a few pounds and are usually available
    from town halls and tourist information centres. They save us from queuing at public toilets, and are often cleaner and of course more spacious.
  10. Getting lost – If you are going to a theme park, and are worried about loosing the person you are caring for, when you get there take them to the guest services and introduce them. Also write your contact details on a piece of paper and put in their pocket.

We hope they will help you plan a harmonious half-term holiday!

Download the complete pack

What are your top tips for caring for children and adults with complex needs this half-term? Let us know in the comments below.