It’s been a wonderful experience running Iris’s shop for her and the sales have supported her home education and therapy costs, a massive thankyou to everyone who has contributed towards this. Nothing lasts forever though and I feel next year it will be time for us to move on to new things. I will keep Iris’s website, facebook page and her other social media sites open and update them when we can. We started sharing her story to raise positive awareness about autism and to inspire other families and that won’t change If you are interested in her Original Paintings you can email me at any time at email@example.com
Like so many of us, Jessica prepared for the birth of her first child with family advice, parenting books and classes. Her experience did not follow the predicted path, their son was born with cerebral palsy and it filled them with frightening uncertainty, exposed to all of the difficulty and unfairness of life. They were fighting to keep their son Ben alive. Jessica was fragile, lost without a clue of what the future may hold and my heart ached for her and their family. Rather than finding the demands of parenting impossible, it was the relentless demands that keep her going. Being held together by her love for Ben and the family’s love for her.
Jessica’s beautiful words and her intriguing honesty have given me a deeper understanding about embracing disability. Her drive for people to understand what their life is like and so many others living with disabilities is inspiring as it will create better support and possibilities. Without a doubt, her book will be extremely useful for my work with The Little Explorers Activity Club that supports families with special needs. Packed full of thought-provoking discussions, she learns to truly listen with deep respect and love.
Extract from Chapter 4
‘We get a train from the nearest village into Edinburgh where the festival is on. While James goes to a comedy show, I take Ben to a gallery of modern art. We see an exhibition of Hiroshi Sugimoto’s images of photographic plates being electrocuted. They are dark pictures with bright white explosions of light, what he calls ‘Lightning Fields’. He seems to have made the invisible visible in all its unpredictable, unique beauty. Perhaps this is what is going on in our bodies– microscopic crackles between synapses and cells that we don’t normally see. Maybe we all have little fizzing rivers of energy flowing from our brains to our muscles, but Ben’s are more like these bright cracks and unpredictable explosions of activity. I am hoping Ben will let me see the whole exhibition, wary that if he is unsettled or something goes wrong with his milk I don’t have James there to help me. But as I push Ben around the museum in his laden buggy he is calm, looking up at the flares of light. I buy a poster of one of these white lightning bolts frozen mid-strike, with the artist’s name in bold text above and the Edinburgh gallery written below. For the next two years, until we move house and the frame gets accidentally smashed, the print hangs above our bed. A little flash of inspiration.’
I’m inspired and will be recommending her book to parents as a testament of following your parenting instincts. Inclusion and environment is the key, Ben is included in all of the love and unique beauty a family can share. Eleven years on, with two siblings he jokes and laughs with them using the Alexa speaker from his eye gaze device, he listens to his father read Harry Potter and a great many other books from their ever-expanding library. Their story spreads an uplifting feeling of hope and I admire what she has achieved and how it will bring light and joy to other families.
Inclusion for Ben is at the heart of everything, so for parents who feel a little lost about where to start to revamp/re organise their homes I asked Jessica if there were any key factors, thoughts, ideas that she felt would be helpful to think about.
‘This is a huge topic. I had an enormous advantage in being an architect so I could tell when I looked round potential houses which would be appropriate for adaptation. I think the most important considerations are level floors and easy access in and out. It’s crucial to be able to get in and out of the house easily (we love having ramps rather than needing use any lifts) and then to have as large an area as possible on the ground floor without needing to push a wheelchair around sharp corners or bump over thresholds multiple times a day. Also, everything needs to be bigger than you think! I thought the landings and widened doorways were ridiculously large but now Ben is eleven I can see that we really need that much space (and still the walls are covered in marks from where we’ve bashed them). But also, good design is key. I feel passionately that designing a house to suit a disabled person doesn’t mean compromising on how it looks, it’s just that a lot of accessible design is bad. A fully accessible house can still be a beautiful house.’
After Jessica finished writing her book it should have been a time for celebration but the Pandemic has been very difficult for many of us for a variety of reasons. I can imagine it has put a huge strain emotionally on families with disabilities as the hospitals were filling up and unable to cope. I asked how she got through those dark moments of worry and what has helped her in these tough times.
‘We had a particularly difficult time at the beginning of the pandemic because I had an accident which meant I had to have major surgery on my ankle just before lockdown. Just as I was discharged from hospital, unable to walk, our daughter developed a cough and fever and so we not only all had to self-isolate at home, but we also had to separate her from Ben within the house. We have always encouraged Max and Molly to be very tactile and relaxed around Ben, and it was heartbreaking to ban her from touching him. At the same time I was reading reports of criteria for hospital treatment and it seemed like Ben’s ‘frailty’ would mean he might not be prioritised should he need hospital care, and we knew he was vulnerable to respiratory infections.
I coped with it by buying an oxygen saturation monitor in the hope that we could care for Ben at home as long as possible if we had to, and we barely left the house for months. We were lucky that some of Ben’s carers were still able to come, and as we headed into the summer last year I could walk again so it has all seemed easier since then. In fact, because we have been so cautious, Ben has been healthier than ever over the last year.
I have found parts of the last year incredibly difficult, as have so many people, but I’ve been lucky to have a husband to share the challenges with, and we are fortunate to have brilliant carers for Ben who have helped us enormously. Still, the pressure of needing to do and be everything to him (teacher, physio, speech therapist, nurse) has been a lot. I actually think the difficulties of Ben’s early years, and the ways in which we are used to our everyday lives being complicated, in some ways prepared us well for the pandemic. The past year has been hard, but we’ve had lots of hard periods over the last eleven years and so I think we have some experience in how to deal with difficult situations!’
It has been a dream of mine for a long time to create an online service at The Little Explorers Activity Club so we can help many more families through our approach. Now, with the Covid19 Pandemic it has become vital that we take the time to develop this support for families in their own homes so they can apply our methods.
With a grant from the Leicestershire County Council Communities Fund this dream has become a reality. I’m delighted to announce that for families that live within Leicestershire, the 30 page E-Booklet is free of charge. To receive your free E-Booklet email us at firstname.lastname@example.org
The power of flip thinking has turned the tragedy of the Pandemic into something that will inspire and support families around the world.
We are trying a new way of auctioning Iris’s Paintings this month, it will be done by a ‘sealed bid/silent auction’ where the buyers will kindly submit their highest bid in one email rather than bidding as the week goes on. I want to adjust our system as the interest in her paintings is so widespread around the world that this seems to be the fairest way to conduct the auctions to fit in with everyone’s time zones.
‘Hiatus’ is painted on thick watercolour paper with many layers of acrylic. It has also been dry mounted onto board and will be sold unframed. If you are bidding from abroad we have a brilliant International Courier Service which we have used to send her art safely to it’s new home in the past.
Iris has been working very hard over the past few weeks on her new home ed project documenting life with her animals. She has also narrated the film. This project was created with her own interests at the core, it has improved her confidence while recording her voice and built on many skills as we worked together creating the film. I have a feeling this will be the first of many as she has really enjoyed making this one with me.
I hear you even if you do not speak. I watch, noticing the details, see and feel more than I ever imagined I could. I stopped focusing on what was hard, I stopped pushing those things that frustrated you, aggravated or even blocked your learning. Together with the help from our animals, you are learning to use your voice.
We have learned how to be with each other without needing these words and I feel that has helped you, the pressure was lifted. I am so proud of you for creating this video with me and sharing it with others, to inspire them to give their children the space and time they need too. x
Reading can take a lot of energy, as adults we take it
for granted but for kids that are learning this new skill it can be exhausting
so go at their pace, little and often is key.
Follow their interests
Before choosing or buying a book have a think about
what they love. What captures their
imagination? What films do they like to watch? What’s their favourite animal?
What cartoon characters do they like? What sensory preferences do they have?
For example if they love water play a story with water would be great.
Read stories that they connect with, share books and
encourage them to explore and read where the motivation is intrinsic because
it’s about something they love.
If your child’s passions are a little unique you can
create your own stories.
Pair up their interest with the book too, so if your
child loves cats, read a book about a cat to a cat.
Cars – read a car book in the car.
Bikes take a bike ride and a picnic and read about a
Thomas the tank engine on a train….you get the picture
Make the stories come alive, inspire your child.
Create themes around a book and other fun activities
to go with the story.
Reading doesn’t have to be just with their children’s
books. It can be recipes while helping
in the kitchen, ingredients, choices for activities, shopping lists, tv guides,
apps, sign posts, letters, magazines…They will start to see that reading is
useful, reading means freedom of choice and knowledge.
Notice where your child goes to relax, where do they
naturally chill out? It could be in the garden under a shady tree in the summer
with a bean bag, a warm place in the house, a big comfy chair, some love to be cuddled
under a duvet in bed. Or lying on the
trampoline, maybe beside their favourite pet.
Take their books to them, if they are happy with you
being in their space read a little and settle in, appreciate what they love
about this chosen place and notice how they use the space.
Some children need physical space to learn and that includes us being a distance from them, I have read books to Iris from another room, knowing she is listening and absorbing the words. Don’t always expect a picture of you beside your child turning pages together. Remember to follow them and take their lead.
Freedom of choice
I like to keep a selection of books in most rooms so
where ever we are Iris can take a book of her choice and have a read or just take
a look at the pictures. It’s useful for
us to notice when their interests shift onto another topic, it allows for new
stories and learning and stops the possibility of getting stuck.
Children are naturally curious, if you would like to encourage their interest in a particular subject or book create an enticing display with toys and props to ignite their curiosity in that book.
To learn new words children need a lot of repetition
so for this I like to use Iris’s ipad with story book apps that say the word
out aloud for her to hear every time she touches the word. Some books highlight the words as they are
read out aloud.
I also buy as many books as I can with the unabridged
audio book so she can listen to the cd while she reads the book.
It’s there so let’s use it
Interactive Story Book apps are incredible these days!
Films spark an interest in more stories, more books
and turn those subtitles on, it all helps.
Find lyrics for their favourite songs (Youtube)
Google Maps, Google Images
Video calling friends and family to encourage
The list goes on and on. Encourage typing, encourage curiosity
Be safe, add parental controls and passwords where
needed. Check search engine histories
and youtube history for security but also to give you more information about
their minds, what do they want to know about?
their own stories
This can start with picture stories with photos of
what happened that day or on holiday.
Add in short sentences and then create stories. Encourage your child to have their own voice,
telling a story, this can be drawn, acted, played or danced. It doesn’t have to be written down. Be creative.
They will turn pages before you are ready, skip pages, rip pages, dirty pages, interrupt you, leave the room, come back, leave the room, come back…not have the faintest interest and then 6 months later that one book and them could be best friends. No predicting it I’m afraid, Iris even enjoys a book on horseback! Just go with the flow and no pressure. Add some reading time into each day but that can be in so many different forms that it doesn’t have to feel like a job or something to tick off that list. Reading becomes part of life.