Tag Archives: learning difficulties

Fostering is one of the best decisions we ever made: #100days100stories

Isabel is a foster carer with Scope’s fostering service. She and her husband foster Rosie, aged 12, and Isabel has shared her story as part of Scope’s 100 Days, 100 Stories campaign. We have changed all the names here, as confidentiality is important in foster care.

I grew up with a friend whose mum fostered disabled children. I’d always thought I’d like to do it, but I thought I’d wait until my children were older.

But then one day at the bottom of my payslip was a message: ‘Interested in fostering?’ And for some reason, I couldn’t stop thinking about it.

We were in our mid-20s when we started fostering five years ago, younger than most foster carers, and our own children, Anna and Chloe, were still very small.

I’ve worked with adults with learning difficulties ever since I left college, and of course I’m a mum as well – so for me, fostering is both profession and family.

Meeting Rosie

Rosie came to stay with us five years ago, when she was six. She goes to a special school, and she has complex learning difficulties. When she arrived, I think she could say one word – ‘no’ – and that was it.

When you start fostering a child you’re shown reports from the professionals who work with them, and Rosie was described as ‘passive’ and ‘stuck in her own little world’. I was told: ‘She doesn’t really communicate, she just cries’.

Over the first few months she was with us, she just completely changed. Soon she was being described as full of life, confident, sociable.

Apparently a little boy at school asked the teacher, ‘Who’s the new girl?’ and it was, ‘That’s not a new girl, that’s Rosie!’

Rosie still has a birth family who loves her, but she didn’t feel safe with one of her siblings, who also has complex needs. When she came here, I think it just gave her the relief she needed to develop to her full potential.

Rosie today

Mostly she just likes bounding about the place! She loves books and photography, she loves playing in the garden, going on the trampoline. This morning we were playing together, feeding a soft toy monkey a yoghurt.

She gets on really well with my own children. They’re just like sisters now – so they get on each other’s nerves and argue a bit! But they care about each other, and they look after each other really nicely.

We’ve done a lot of work with Rosie to help her learn sign language. She still doesn’t have a lot of speech, but she’s very good at making herself understood now.

But I think the main thing we could do was just make her feel safe and secure, and make sure she feels loved and wanted.

It’s not like a conventional job at all. On a day-to-day basis, I just feel like Rosie is a member of my family – the only time it feels like a job is when you have to go to meetings and reviews and that sort of thing.

But when we’re out at the beach or going to school, it just feels like we’re a family.

Getting permanency

After Rosie had been with us for about 18 months, we went through the process that means Rosie can stay with us permanently, through to adulthood.

Scope is still there to support us and nothing has really changed – it just gives us stability and the comfort of knowing Rosie is here to stay. And for us, she’ll always be part of our family, even when she’s grown up.

Deciding to foster was one of the best decisions we ever made. We’ve got so much out of it as a family. There have been lots of high points, but just having Rosie in the family is a high point in itself.

40% of children waiting for a permanent home are disabled. Can you help us be there for them? Please donate to Scope’s Fostering appeal – you can help another disabled child find a safe and loving home where they can thrive.

10 Christmas present tips for parents and carers

The festive season can be a stressful time. Our online community has hundreds of practical tips to help you this season – from dealing with extended family to having days out.

Here are some of our favourite tips from the community for buying, wrapping and giving presents this Christmas:

1. Have a whip round

Friends and family never seem to know what to get George for Christmas and what they do give him nearly always ends up getting
broken or ignored. So this year I’ve suggested they contribute towards buying him a tablet, which he will definitely use. I think they’re quite relieved not to have the stress of choosing something for him.

2. Sparkly Christmas paper

For visually impaired children or those with a sensory impairment,
buy lots of sparkly Christmas wrapping paper as it’s very good for
catching and holding their visual attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well.

3. A few of my favourite things

Wrap up some old favourite toys as Christmas presents if your child is not keen on opening presents as they have new and unfamiliar things in them. You can secretly hide some favourite things in the weeks leading up to Christmas – sometimes unwrapping something familiar is very reassuring!

4. Sometimes the simple things are the best

A couple of years ago we bought Reece helium balloons, and I think we spent about a tenner – and that was what he played with all day! Whereas everything else we got him, he didn’t want any of it!

5. Play with wrapping paper

Give wrapping paper to play with ahead of Christmas, cut, tear… so your child gets comfortable with the noise and look of it. Choose less
‘visually noisy’ paper and avoid patterns that can produce sensory
difficulties to your child.

disabled-girl-given-present6. Ready to go

When we give our daughter a gift, we make sure all packaging is removed, batteries are in, and it is set up ready to use as soon as she’s unwrapped it. For someone with limited attention and suspicion of new things it can make the difference between acceptance and rejection.

7. Spread out the presents

Don’t feel that all the presents have to be opened on Christmas morning in the traditional way. Our son would get so overwhelmed he couldn’t cope so it was much easier to allow him a few gifts at a time throughout Christmas Day and Boxing Day. He opened them all in the end without any tantrums and was much calmer and happier, meaning we all had a far more enjoyable time!

8. Design your own wrapping paper

Get your family to design wrapping paper. Simply buy lots of plain brown paper and allow them to have fun with paints in seasonal
colours.

Parents-with-disabled-son-unwrapping-Christmas-presents-half-size9. Opening cards and presents

My son has trouble with fine motor skills so I ‘doctor’ his cards and presents to allow him to open them easily. Makes for a much happier time for all and gives him a sense of satisfaction that he can complete tasks!

10. Don’t forget the giving

Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills like thinking of other people, other people’s needs and interests and being kind and helpful. I support my daughter to make gifts for her family and friends. She also looks forward to actually giving out the presents as well!

Got your own tips to share? Share them on the community or let us know in the comments below.

(Photo credit: Katy Warner)

What makes me frustrated? People not listening to me – #100days100stories

John lives in a shared house in Hereford, with support from Scope staff. We first shared his story in December 2014, and we’re republishing it here as part of our 100 Days, 100 Stories campaign.

The night before John and I met, he hosted his 50th birthday party in a local social club. More than 100 people came, from all parts of his life – friends, people he’d met while volunteering, support workers, even his fitness instructor.John in a coffee shop near his home

John lives in a supported living house run by Scope in Hereford, and has chosen to share with two others rather than live alone. He has cerebral palsy, uses an electric wheelchair and has learning difficulties.

Becoming more independent

I met him, along with Lottie, who manages Scope’s service in Hereford, in the café of a theatre near his home. John arrives dead on time, unsupported and under his own steam. When we’re settled, Lottie reminds him that this wasn’t always the case.

“We worked together for about two years, learning how to go independently in and out of town. We’d go into town together – I used to sit in a coffee shop in the centre of town, and you used to go off and cross the road to the newsagents and then come back when you’d bought whatever you needed to buy”.

“We did that for 12 months – you’d have different tasks to do, going into WH Smiths or the bank, and things like that.”

“[Now] I get it all by myself,” adds John.

“You do a lot of things yourself now. Whereas if you go back 10 years, you would have probably spent about an hour a day on your own, and that was only at home, never out. You’ve learnt these skills.”

John and Lottie have worked together for 20 years, and tJohn in a coffee shop near his homehey have a strong mutual understanding. Lottie encourages John in the conversation as talking is quite difficult for John, but he listens and often adds his own thoughts.

Leaving residential care

As a young man, John lived in a large care home for disabled people. It had more than 60 beds, and was out in the countryside miles from the nearest town. John had little control over his day-to-day life and most decisions were made for him, from what to eat to what time to go to bed.

“[It was] horrible. You couldn’t do nothing. There was no town to go into. You’d have to ask the staff to take us out in the van,” he says.

John lived there until his mid twenties, when he moved to a house run by Scope’s community support service. He later became a tenant in the house, which means he can change his care provider if he chooses without having to move out. He pays for his team of support workers out of his personal budget, signing the cheques himself.

“I like to choose”

He is involved in all kinds of activities – from gardening at a local college to wheelchair football, to a music club where he volunteers to collect members’ subscriptions and take the money to the bank. During our conversation, at least half a dozen people stop to say hello to him.

“[In the future I’d like to] do more, like I am now,” he says.

Towards the end of our talk, Lottie asks John what makes him frustrated. “People not listening to me,” he says. “I like to choose. My own food. Be treated normally.

“I do things by myself, but there’s someone there if I need them.”

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

Amanda’s story: Caring for a disabled child and supporting other parents

Guest post from Becky, who works in Scope’s fundraising department.

Being based in Scope’s office in London, it’s easy to become detached from the day-to-day reality of what life is like for disabled people and their families.

AmandaAmanda and her husband Neil found their lives changed forever when their daughter Livvy was diagnosed with autism and severe learning difficulties at 22 months. A freelance journalist at the time, Amanda had to change direction and, in her own words, she was given “a new path”.

Amanda now works part-time for Scope as the Coordinator for Face 2 Face in Brighton and Hove.

When we sit down in her living room and start chatting I am immediately struck by Amanda’s resilient character. As well as Livvy, now 13, Amanda has three other children aged three to 11, works for Scope and is a governor at two of her children’s schools.

But despite her obvious strength, I’ve no doubt that things must have been very difficult for Amanda at times.

Livvy developed epilepsy aged five and has tonic seizures every day which Amanda says are “really horrible”. This means that Amanda and Neil have to monitor Livvy during the night, taking turns to care for her.

Recently Livvy has had to spend more and more time in a wheelchair, and has lost some of her communication skills. But it is the spontaneity of Livvy’s seizures which seem to have the biggest effect on Amanda, and it is the only time during our meeting that I can sense any vulnerability in her.

Family holidays are out of the question as it would be too overwhelming for them to take Livvy away overnight. Amanda tells me that she would be really nervous about something happening, and so they use some of the time Livvy spends in their local hospice, Chestnut Tree House, as a safe holiday instead, with the family going along to stay with her.

Amanda says that getting support for Livvy from her local authority has not been difficult, because Livvy is so severely disabled. But this is not the case for a lot of the parents she meets – many of whom are struggling with the system, and have to fight for everything.

Amanda is a powerful spokeswoman for these parents – definitely someone I would want to have on my side if I was a parent of a newly-diagnosed disabled child.

When I leave the family’s house I feel uplifted by Amanda’s story. Her outlook on life and appetite to achieve positive change for disabled people reminds me why I chose to work for Scope.

10 tips for parents and carers this Christmas

Guest post by Emma from Netbuddy. Next year Netbuddy will be joining Scope.

The festive season can be a stressful time, especially if someone in your family has learning difficulties or autism. So, to help you put the fun back into Christmas, we’ve pulled together these tips from parents and carers. Download all the tips in a PDF (731KB).

Christmas presents

English: Gift ideas for men - wrapping paper e...
(Photo credit: Wikipedia)

1. A few of my favourite things – Wrap up some old favourite toys as Christmas presents if your child is not keen on opening presents as they have new and unfamiliar things in them. You can secretly hide some favourite things in the weeks leading up to Christmas – sometimes unwrapping something familiar is very reassuring!

2. Use foil – Foil is an excellent wrapping paper. It is very sensory and makes for an easy to open present!

3. Ribbon for wrapping paper – Instead of using wrapping paper, I wrapped a present in a piece of material and tied with a ribbon. Once the ribbon was in person’s hand she pulled and hey presto, she had unwrapped it herself!

Christmas decorations

English: Artificial Christmas tree with lights...
(Photo credit: Wikipedia)

4. Decorations outside of the house – If your child can’t cope with decorations being on the outside of the house, try telling them that the house is getting dressed up for Christmas!

5. A sensory tree – We have sensory items on our Christmas tree. Different textures, smells and things that make sounds – so the little girl I look after with a visual impairment can enjoy it too!

Christmas visitors

6. Preparing for a crowded house – I’ve started to prepare my son for a crowded house at Christmas by inviting his friends around for Sunday Club and making a party for the family to have dinner or a disco. Announce visitors on your child’s visual timetable. Allow quiet time if he/she needs to step out.

7. Talk to family members – Talk to family members ahead of time. Discuss your child’s specific needs, and gently but firmly tell them what your plans are. Be sure to let them know that this will make the whole experience better for everyone. Ask for their support.

8. Prepare a calm place – I used to worry about Dan’s behaviour when spending time at family member’s homes over the festive season. Basically, I’d take him and hope for the best! However, I’ve found that planning and preparation in advance hugely helps. I work with my family and we make sure we have a calm room or a space he can go to for when it all gets too much. I put his favourite blanket in there. Having some time alone, or just with me keeps meltdowns to a minimum.

The excitement

Girl unwrapping presents

9. Spread out the presents – Don’t feel that all the presents have to be opened on Christmas morning in the traditional way. Our son would get so overwhelmed he couldn’t cope so it was much easier to allow him a few gifts at a time throughout Christmas Day and Boxing Day. He opened them all in the end without any tantrums and was much calmer and happier, meaning we all had a far more enjoyable time!

10. Stay Calm! – If your child reacts badly to stress, staying relaxed and low-key over the Christmas period is one of the best things you can do to keep your child’s behavior in line. Save the tantrum (yours) for when you get home.

What are your top tips for Christmas? Let us know in the comments below.

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.