He warms the hearts of all those around him,
His cheeky smile lights up the room and brings out the smiles in others.
He's half the clothes size he should be, but larger than life.
He's passionate about nature and dinosaurs, reciting facts from encyclopaedias.
He runs like a cheetah, jumps like a kangaroo and climbs like a monkey,
He talks like a parrot, can speak like a grown-up and stuns us daily.
He is our sunshine, our superstar, our everything...
BUT HE NEEDS ADDITIONAL SUPPORT
His brain is wired differently, and the world we live in is all too overwhelming for him to cope without!
Hi, my name is Alison, and my husband and I are working closely with Kentisbury Grange, Barnstaple, North Devon (see bottom of page) to raise funds for 'Apple Tree Farm' and the ‘National Organisation For FASD'.
This hugely important campaign raises awareness of a hidden disability that is currently not as well known as other hidden disabilities like Autism. Still, thousands of families in the UK live with FASD every day. Whilst doing so, we'd like to say a massive 'Thank You' to Apple Tree Farm (our local farm therapy CIC) for their tremendous help.
You see, a large part of the support our family has comes from the remarkable team at Apple Tree Farm that goes above and beyond for so many children with additional needs every day.
APPLE TREE FARM WOULD LIKE TO BUILD A SENSORY ROOM, AND WE'RE HELPING TO RAISE THE FUNDS...LIFE FOR CHILDREN WITH DISABILITIES WITHOUT SUPPORT CAN BE DARK AND LONELY; HELP US TO KEEP THE LIGHT ON.
Please continue to read to learn more about our story and how having the proper support does make a difference to families like mine :) And then please, please, please DONATE.
OUR FASD JOURNEY
Five years ago, we adopted our little bundle of joy, and I’m so pleased for him that I can write this whilst sitting in the barn watching him be pulled along on his pretend quad bike with a trailer loaded with hay; he’s enthused and comfortable.
He was so different in 2020, aged 4, living in fear of the world. He’d got to the stage of refusing to go out; he’d distanced himself from friends, didn’t want to go to preschool, was unable to sleep and spoke like a parrot day and night without making sense. When he wasn’t zoned out in front of T.V. watching clips of ‘Whales’, he would constantly be on the move, jumping, running, spinning and hanging. Unable to stop, he’d fleet from one activity to another without being able to focus on joining in any appropriate task. He had no impulse control or awareness of cause and effect, so his actions were unpredictable and often dangerous.
Defensive emotional behaviours were shown physically and with no warning he’d lash out with hands, feet and/or head, towards himself, others and property and behaviours were mirrored at preschool, on the occasions he managed to attend. He would also frequently flee. He’d struggle to understand our words to him, and be forgetful, and his words to us lacked meaning and were often inappropriate as he’d go off topic reciting words from encyclopaedia and repeat like a ‘broken record’. When he could verbalise what he wanted to say those words were restricted and often muttered and jumbled. I can only describe our small, isolated family, as like one of his toys, we were being thrown out of control and falling fast, constantly hitting a wall and questioning why. We felt constantly judged and/or patted on the head. Every day was a battle to complete the necessities of washing, dressing, eating and drinking. He was sensitive to praise and sounds of celebration so typical parenting methods wouldn’t work, even some therapeutic ones. He was sensitive to music, background chatter, road noise, movement, crowds and some lighting which meant also the weekly shops had to be done online. For safety reasons, all times he was awake, we had to keep him at arm’s reach, hold hands or use harness. Life felt on hold, existing but not living…. Everything seemed to either overstimulate or overwhelm him into meltdowns. I guess the frustration from having no personal space got to us all and we were exhausted.
At the end of 2020 we got a diagnosis of Foetal Alcohol Syndrome (FASD), and this helped in the sense we could label his behaviours, understand why developmentally he was still 2 years old (half his chronological age) and knew we’d done nothing wrong. But we didn’t have clear pathways of how to get the support he needed. This we had to find and fight for ourselves.
In 2021 and at rock bottom we reopened our door to the Adoption Services. Understanding how therapeutic animals can be from loving many wonderful pet dogs throughout our own lives and having already researched the benefits of animal therapy for children, we were then searching for similar therapies based outdoors, a simple point in the right direction by our Post Adoption Support Worker led us to Apple Tree Farm.
I remember vividly how Apple Tree described him as the youngest and one of the most complex children they had ever welcomed and at first meeting they too were unsure what they were able to do to help this little man, he was full of fear and saw no boundaries and would flee unpredictably over fences on impulse. It took time, but the farm was FASD aware and after a few weeks he began to respond, first with encouragement he wore ear defenders to block out farm noises.
To gain his trust, his support worker would let him lead and show her where and what he wanted to do, this meant waiting at the car until he was ready to come out and then spending many an hour hiding in the barn together with the smaller animals.
Nearly 9 months have passed and with their patience, hard work and commitment, he is no longer wearing his ear defenders and has a routine of activities of feeding the animals, and sometimes bakes for himself and others in the farm kitchen. He no longer needs to take the lead; he feels in control doing routinely tasks as set by his 1:1.
The farm has focussed their energies on helping him gain some self-control and use his words which has improved his self-esteem, strength to over-come his fears, anxieties, and well-being. The farm educates in life skills, provides core body exercise (sensory diet), and is a place he goes to repair, recharge and regulate. The predictable pattern of his two weekly sessions helps him to manage challenges at school and get through the week without becoming overwhelmed.
Apple Tree Farm has acted somewhat as a support hub for us, to get access to the right support, for guidance, an opportunity to meet other parents going through similar and for little man to meet and spend time with like-minded peers, of variable age, without expectation. The farm gave us light when we most needed it and time to rest and regain our family’s strength, no longer do we feel that we are just existing, we are now living.
Our fight for support also led us to a messy play workshop and sensory room for children with SEND. The sensory room has helped our son to regulate when the world has got all too much. We so want Apple Tree Farm plans to come to fruition as we know how important sensory rooms are for those with sensory processing disorders, Autism and FASD.
WHAT IS FASD?
Foetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the life-long impacts on the brain and body of individuals prenatally exposed to alcohol during pregnancy resulting in a spectrum of physical, emotional, behavioural and neurological characteristics. The injuries caused are permanent and incurable. It’s important to be aware and understand that individuals living with FASD have their own unique areas that create daily challenges, no two persons are exactly alike, and that they will also have their own unique strengths and talents which, with support and nurture, they can achieve great things with and be the best they can be.
FASD can cause disabilities of varying levels of severity; these can be mental or physical and is often hidden.
Signs and symptoms:
Short attention span, unable to concentrate, easily distracted.
Hyperactivity e.g., they might be excessively active, restless, overly talkative, fidgety.
Academic issues (especially with mathematics).
Speech and language issues e.g., they might have great expressive but poorer receptive language.
Short term or working memory issues.
Adaptive functioning impairments that grow more recognisable with age.
Struggles with emotional regulation.
Social challenges including difficulty making and keeping friends even though they can be very sociable.
Sensory impairments such as vision or hearing.
Can be oppositional or defensive when requests are made.
Inconsistent performance - can do something one day but cannot the next.
Abstract reasoning issues e.g., ability to look at things from different angles, analyse information, detect patterns etc.
Inability to generalise e.g., difficulty applying something learned in a different situation and setting.
Lack of cause and effect thinking with no sense of danger.
Difficulty with identifying and understanding their own emotions.
Some physical signs include low body weight, vision or hearing problems, heart, kidney and or bone defects, shorter than average height, small head size and abnormal facial features.
FASD is not easily recognisable making it difficult to provide affected individuals and families the supports they desperately need. The good news is that FASD is not hereditary and only occurs if a woman drinks alcohol in pregnancy and therefore is 100% preventable and the hope is that new medical guidelines (NICE) being prepared for release will help improve awareness throughout the community and professionals to hopefully reduce the number of children born each year with FASD whilst helping to identify, diagnose and support those in need. Of course, no mother would deliberately hurt their baby, they’re just not aware of the real risks.
Often the condition goes undiagnosed or is diagnosed for example as autism or ADHD rather than those conditions being recognised as related presentations of FASD.
Without the right support, what are the likely impacts on life?
Defensive behaviours develop when there is a poor fit between the person with FASD and their world. These behaviours can be lessened or prevented with diagnosis and appropriate support. Failure to meet the needs of the individual could lead to issues with their education, mental health, and difficulties with independence and employment. They could also have increased susceptibility to victimisation and/or partake in criminal activity.
What therapies and interventions are effective?
As with all individuals it is important to find out what the person does well and encourage them in it, some common personal strengths include being Caring, Articulate, Friendly, Musical, Artistic, Creative, Practical, Athletic, Animal skills, Nature Skills. Supported activities that enable individuals to use their strengths and talents are key to sustaining emotional wellness. Regulating outdoor therapies are proven to be the most successful together with support groups and workshops, and sensory integration therapies. One of the outdoor placement types listed is ‘farm therapy’.
Go to https://www.nationalfasd.org.uk or https://www.fasdsouthwest.org for more information and or support
WHY DO WE WANT YOUR HELP TO SUPPORT APPLE TREE FARM?
Support Services are few and far between and are under extreme pressure to support the growing number of children in need; largely because of the effects of COVID-19 lockdowns. Most of these services rely on charitable fundraising and public donations. Apple Tree Farm provides vital outdoor farm-based therapies proven as effective for children with disabilities, and many of these children have sensory impairments, learning difficulties and developmental disabilities and would benefit from a safe and cosy Sensory Room.
What is a Sensory Room?
A safe and relaxing space which contains a variety of sensory stimulating and interactive equipment including fibre optic and reactive lighting, musical instruments, tactile objects and tools that develop cause and effect response. Users are helped to understand and engage with the world around them in a safe and comfortable place that builds up their confidence and ability.
Learn more about Apple Tree Farm, visit http://www.appletreefarmservices.co.uk and http://www.facebook.com/appletreecarefarm
Donated funds will be split: 80% Apple Tree Farm / 20% National Organisation for FASD
KENTISBURY GRANGE, NORTH DEVON is sponsoring our campaign. For one night only, they are opening, not-for-profit, and will host a fine dining experience in their excellent restaurant 'The Coach House', together with a pledge auction set for Monday, 7th March 2022. The evening will be a celebration of our beneficiaries' marvellous work whilst continuing to raise funds. There truly is some fantastic food and items on offer. If you are interested in joining us on the night and/or would like to participate in the auction, please visit Kentisbury Grange's webpage for further information https://www.kentisburygrange.com/news-and-blogs/fasd-awareness-fundraiser-event-for-apple-tree-farm you can also explore Kentisbury Grange on Facebook https://www.facebook.com/KentisburyGrange/