We want to build a better world for children with with severe and complex learning needs
We formed Incredible Me to pursue this mission, and it guides everything we do.
We have three key goals:
- Offer information and family support
- Develop play and leisure activities
- Provide educational resources
Our children’s challenges
Children with severe and complex learning issues face major physical and mental challenges on a daily basis. This obviously severely impacts their lives.
Due to this, their parents and carers need to deeply understand those challenges so they can do everything they can to support them.
Below is some useful information concerning the nature and significance of the challenges in question. The more you know about them, the more you’ll see why our work is vital.
Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people. It shapes how they experience and interpret the world around them. According to the National Autistic Society, there are currently more than 700,000 adults and children on the autism spectrum in the UK.
Autism is a spectrum condition. All autistic people share certain challenges, but their autism will affect them in different and sometimes unique ways. Some autistic people also have learning disabilities, mental health issues or other conditions, which may require differing levels of support. All people on the autism spectrum can learn and develop. With the right support, everyone with autism can be helped to live a fulfilling and rewarding life of their own choosing.
To learn more about autism, please view these short films:
Amazing Things Happen – by Alex Amelines
What it's Like Being Autistic (Sensory Overload) Short Film - National Autistic Society
Communication can be challenging for those with autism. Around 40-50% of children with autism are either non-verbal or have difficulties participating in conversations. It is hard for them to read facial expressions or anticipate what somebody else might be feeling.
People with autism may also have difficulties in expressing their own needs and may become isolated and detached from others. Many children with autism suffer from Sensory Integration Dysfunction, which includes sensitivity to sensory stimuli such as sound, taste, smells, sights and textures.
Some autistic people may be over-sensitive to the feel of different textures such as fabric against their skin or grass under their feet. Others may be under-sensitive to pain and discomfort and struggle to protect themselves from injury. Some children with autism can struggle to filter input from different sources, so they experience everything at once, which can be overwhelming and disorientating.
Repetitive behaviour patterns are also common among children with autism. Behaviours can include repetitive body movements, the constant need to follow certain routines or fixating on organising items in a certain way.
Children on the autistic spectrum often experience difficulties with vestibular processing. In particular, balance and body connectivity. They tend to struggle to understand the inter-connectivity of their body parts and how this relates to the space around them.
Sequencing activities and activities that involve bilateral coordination, such as jumping, throwing and catching can be a challenge to those with autism. Children with autism are often at a higher risk of experiencing accidents and injuries caused by misjudging the distance between steps, or how far away an object is as they are walking towards it.
A child who suffers from problems associated with vestibular processing can find many aspects of everyday life difficult. Their reaction to movement may be either hyporesponsive - where they crave movement, or hyperresponsive - where they are fearful of any changes in gravity and position, or both.
A child who is hyperresponsive to the vestibular sense may be fearful of movement because they feel insecure and unbalanced. They tend to prefer sedentary activities and avoid situations where their feet leave the ground, such as swinging or climbing. They may be fearful of going up and down stairs, find it hard to sit upright and concentrate and may find moving around difficult, often moving slowly and cautiously.
On the other hand, a child who is hyporesponsive to the vestibular sense may appear to be in constant motion, unable to sit still or stay in one place. They are always on the go, and this can really have an impact on their ability to sustain concentration without moving. They may appear clumsy and uncoordinated, impulsively running, jumping and moving around all the time, unaware of any physical dangers.
The Resource Base specialises in educating and engaging autistic children. Its work involves creating a safe space for autistic children to grow and develop. It tackles the challenges that they face, providing them with a supportive environment in which to grow and develop.
The Resource Base prides itself on being a completely inclusive educational environment. The children have a full range of severe and complex learning difficulties. The majority of children who attend the Resource Base are on the autism spectrum. While they currently have no children that require a wheelchair to access the Resource Base, this could be a requirement in the future.
Many children in the classrooms have various special educational needs outside of autism that require significantly differentiated and adapted learning activities and environments. At the Resource Base, the staff create a meaningful learning environment that meets these children’s diverse needs within the context of our setting.
The children with severe learning difficulties (SLD) may experience significant intellectual or cognitive impairments. Their cognitive and/or attainment levels are normally at or below the 0.01 percentile. This has a major effect on their ability to participate in the school curriculum without support or within a specialised setting.
Often with SLD, the child may also have difficulties in mobility and coordination, communication and perception and the acquisition of self-help skills. To achieve their potential, they will need support in all areas of the curriculum.
My name is Charlie, I am five. My family are Mummy, Daddy and my sister Isabelle who is three years old. All of my Grandparents live away from my home, so I don’t get to see them very often.
I’m very active, don’t like new places, don’t always understand what people are saying to me, don’t stop when I’m asked to and can’t sleep in a normal bed.
This means my family and I can’t go away to visit anyone or go on holiday, so everyone has to come and stay with us.
I don’t always enjoy this as my home is my safe place and new people change that. This does mean we are on our own quite a lot as none of Mummy and Daddy’s friends understand that I’m not just being difficult.
I don’t talk, so it’s difficult for me to let people know what I want and, likewise, what I don’t want. At the moment I show them by leading them to the object or pointing but when they don’t understand I can get very frustrated. If there’s something I don’t like, for example loud noises, I can’t tell anyone to stop or help so I can get distressed.
I’m consistently on the go, always moving, jumping, pushing against things or people as it helps me figure out where I am in the world. My body doesn’t give me the feedback yours does, so most of the time I feel like I’m floating in space.
When it’s bedtime I always have to do the same things before bed. This makes me feel calm and I know what to expect. My bedroom has no natural light as I’m very sensitive to the light and it wakes me up. I have no toys in my room as that’s just where I sleep. My bed is a very special tent made especially for people like me.
I have no idea as to what is dangerous or what can hurt me. This is because I don’t feel pain in the same way as you do. This means I don’t always know when I’ve hurt myself and don’t cry when I should do, so that I can let someone know I need help.
My bed helps keep me safe at night and means Mummy doesn’t have to sleep by my door at night as she knows, even if I wake at my normal time of 2am that I will be ok. My blanket is also very special as it’s extra heavy, so stops me floating off to space.
My Mummy calls me her little Houdini as I try to escape and run from everywhere, I go. I have learnt how to climb over the stairgate at home, so now we have a dog guard. I love to try and burrow under the fences in playgrounds, so have to be watched all the time to stop me from escaping. I’ve also learnt how to open my front door — it’s really fun running down my street on my own! Mummy and Daddy have had special door locks put in place which stops me doing this now. Boring!
I have been at Long Cross Resource Base now since September 2020. I’m one of eight in our class — Puffins. My teacher is called Ellie and our learning assistants are Deb, Anna, Becky and Tash.
I needed lots of cuddles from Ellie when I first started at Resource Base. This was to make me feel ok about Mummy going. This made Mummy very sad.
I really struggle to build relationships with my peers and adults. It’s hard for me to trust new grown ups as I don’t think they will be able to understand my needs. I get very upset when I first meet someone new. Now, though, I love going to Resource Base. I bounce about in my car seat before I go in and run into class. Mummy knows I’m happy now as when I leave at the end of the day and say goodbye to Ellie, I give her a kiss — I’ve never kissed anyone other than Mummy and Daddy.
Mummy has made lots of friends with the other Mummys, teachers and learning assistants at Resource Base. We’re one big crazy family who are there to support each other.
Being in a family like mine can be isolating and lonely. Resource Base is full of people who understand us and can share, laugh and cry about and with us all.
We all have lots of different things that make us upset or scared, but everyone at Resource Base sees us as the little people we are, not the label we have been given.
This helps me, my classmates, and all the Mummys, Daddys, Grandparents, Aunts and Uncles, Brothers, Sisters and friends face the rest of the world.
How we achieve our goals
Here’s a more in-depth look at the specific actions we take to achieve our goals:
Offering information and support
To help children get the education and care they need, we offer free and impartial advice concerning education, health, and social care. We chiefly focus on the pupils who attend Long Cross Resource Base by supporting their parents and carers however we can.
We have three key focus areas:
- Helping parents understand and complete paperwork
- Liaising with other services and organisations
- Showing positive outcomes for parents of children with severe and complex learning needs
This empowers parents to make appropriate and informed choices.
Developing play and leisure activities
It’s extremely important for children with severe and complex learning needs to be active, which is why we’re dedicated to developing playgrounds and outdoor activities that meet their needs.
There are three things we’re focused on:
- Enabling access to rewarding activities such as swimming and horse riding
- Making outside spaces viable for safe and accessible outdoor learning
- Furthering the forest school method for experiencing the natural world
Long Cross is part of Lawrence Weston, an area mainly consisting of council rented flats, populated by residents who are semi or unskilled workers or claiming benefits and who have little or no qualifications. This is reflected at the school in the proportion of disadvantaged pupils eligible for pupil premium funding being well above the national average.
Deprivation in the local area means that additional support is required to help fund the resources that these children need. The additional resources that the funds provide will directly improve the lives of those who need the support most. Below are some stats that make the situation clear.
Accommodation in the Long Cross area of Bristol consists predominantly of flats, which is common in inner cities, student neighbourhoods and poorer suburban settings. (Please note that the figures may include adjacent streets.)
The Long Cross area of Bristol contains a higher than average level of social housing, with 66% of household spaces managed accommodation. This contrasts with the national average of just over 18%.
Social Grade approximations are derived from an algorithm created by the Market Research Society. The figures shown are per-household rather than individual - more specifically, the job title and employer of the ‘household reference person’ is used. This figure is analogous to what traditionally was called the head of the household. Only household reference people between the ages of 16-64 are included.
Education & qualifications
Typically, residents in the Long Cross area have few or no qualifications. This is in stark contrast to the UK average., At the time of the 2011 census, across the UK 22.9% of residents had no qualifications, 13.2% had 1-4 GCSEs, 15.2% had 5+ GCSEs and 1-2 A/AS-Levels, 12.3% had 2+ A-Levels, 27.1% had a degree (or similar), and 3.6% had an apprenticeship.
The qualification levels are based on current qualification names. The former Ordinary Levels (O-Levels) and CSEs are included in the GCSE figures. Former Higher School Certificates (HSCs) will be counted as A Levels.
Indices of Deprivation
In 2019, Bristol 003C Layer Super Output Area (LSOA) ranked 1,587 out of 32,844 LSOAs in England (where 1 is the most deprived LSOA). This is amongst the 4.8% most deprived neighbourhoods in the country. In 2015, this LSOA was ranked 1,499 out of 32,844- amongst the 10% most deprived neighbourhoods in England.
Bristol 003C is one of 263 LSOAs in Bristol, City of local authority district. Using the IMD rank of average summary measure, this local authority ranked 76 in 2015 and 82 in 2019, out of 317 local authorities.
In 2019, Bristol 003A LSOA was ranked 3,871 out of 32,844 LSOAs in England; where 1 is the most deprived LSOA. This is amongst the 11.8% most deprived neighbourhoods in the country. In 2015, this LSOA was ranked 2,383 out of 32,844- amongst the 10% most deprived neighbourhoods in England.
Bristol 003A is one of 263 LSOAs in Bristol, City of local authority district. Using the IMD rank of average summary measure, this local authority ranked 76 in 2015 and 82 in 2019, out of 317 local authorities.
Here are a few examples for the thinking behind the play equipment choices we have made.
The sensory tunnel provides a fantastic and immersive sensory experience that provides stimulation for all five of the senses through its fantastic features. Sight, tactile, audio, taste and smell are all targeted on this journey as children learn through play.
An enchanting space is created as light hits the multi-coloured polycarbonate panels. Rainbows of light transform the tunnel into a calming space for the children to self-regulate themselves. Wide enough for careers and wheelchair users, it is fully inclusive for those of all abilities, enabling each and every child to stimulate their senses on a magical journey.
Pull up bars within the playground will allow children to take their feet off the ground, swing and hang upright or upside down, any which way they can. They require lots of movement, posture adjustment and visual stabilisation. They offer children valuable opportunities to practice balance, to move at different heights off the ground. Stopping and starting and changing direction is also supported.
In-Out Shapes are an inclusive resource that have been designed with the intention to provide children with Special Educational Needs, specifically those that affect communication and language skills, with regulatory, heavy work activities and a breakout space in their outdoor environment.
As many children find free-flow, open-ended, physical play activities therapeutic, the free-standing shapes enable children to relieve tension. Presenting children with an area where they can participate in self-regulatory play enhances their understanding of how and when to calm themselves. Recognising when they may be feeling frustrated or need to refocus themselves, children can use the shapes to feel focused, centred and ready for learning.
Get Set, Go! Blocks are a brilliant obstacle resource for children, presenting alternative movement options including climbing, crawling, stepping, jumping and rolling. They can be set up in different layouts which enable us to increase or reduce the challenge and to alter the range of movement required to complete the course.
Sensory Spinners provide visual, audio and tactile stimulation. Children can spin the spinners to make noise, create rainbows of colour as light hits the polycarbonate panels, or touch and feel the artificial grass or Saferturf tactile triangles. The spinners are a wonderful, space effective addition to any playground for children with SEN.
A specially designed trampoline would allow children to bounce safely. Bouncing supports self-regulation. It can be calming or alerting, depending on the needs of the nervous system at any given moment. It provides proprioceptive input to the spine and lower body joints, which is also calming, organising and regulating. Bouncing can improve a child’s awareness of their own body and their body in space. For children who also experience physical disabilities, it can help the lymphatic system with circulation and drainage, improves core strength and help lower body proximal stability and weight shifting.
We are applying for funding to build an exciting, engaging and safe outdoor learning environment.
The new playground has been designed to fulfil the needs and requirements of our diverse range of children. It has been created to provide a safe, secure and rewarding environment for sensory learning and physical activity. The space will be able to be used in all weathers and be fully inclusive to the disability needs of our children.
The space needs to be segmented and planned with due consideration for how children will transition from one area to the next. There needs to be adequate room to manoeuvre, space to escape easily, if interventions are needed and the ability to minimise interruptions within calmer spaces from messier and noisier activities.
We will have three clearly defined play and learning areas, each with their own identities and learning purpose. These will include:
- Active and Adventurous Area:
where children can engage in motion on spinners. They can also partake in physical development by hanging on pull up bars, climbing through the In an Out shapes and enjoying highly active activities where play will be busier and louder — riding around trikes on the path or using the Get Set Go blocks.
- Sensory Sheltered Outdoor Classroom:
where learning and play will be more structured and purposeful by using the covered sandpit which lets adults lead play from the same level. There will also be free flow opportunities that extend straight from the classroom with a sheltered canopy for all weather outdoor play.
- Forest school:
encourages the use of our magnificent woodland and grass areas, with inclusive accessibility through paths that allows the areas to be part of lesson activities and play.
Spending time outdoors often exposes children to unpredictable situations. This means they should learn to adapt to changing weather conditions and seasons. For some SEN children, change and unpredictability is a real challenge. It’s also an incredible opportunity.
Children with special needs and severe learning difficulties can benefit immensely from regular physical activity and exercise. Evidence has demonstrated that being active offers huge benefits to physical, mental and social development, for example:
- Improvements in muscle strength, coordination, and flexibility
- Increased exercise endurance and cardiovascular efficiency
- Better balance, motor skills and body awareness
- Improvement in behaviour, academics, self-confidence and the ability to build friendships
- Positive changes in health, quality of life and a well-needed boost to their self-esteem
- The ability to experience a sense of accomplishment and possibly the taste of success and personal satisfaction
- Increases in attention span, on-task behaviour, and level of correct responding
- Increases in appetite and improvements in the quality of sleep
- An outlet for their physical energy
- Helps them cope with stress, anxiety and depression associated with their disability
Numerous research studies into disability groups have found that participation in physical activity and sport leads to improved levels of physical health and wellbeing. Children with a diagnosed intellectual disability may have additional physical disabilities which can result in below age-level performance in typical motor skills. Regular involvement in physical education and sport can help them to develop the skills that they need for a more independent life.
When encouraged to participate in frequent physical activity, many children with special needs see improvements in everything from their hand-eye coordination and flexibility, to their muscle strength, endurance, and even cardiovascular efficiency. These are all simply the natural benefits of exercise, the development of better motor skills and enhanced physical health.
Regular exposure to sports through physical education, specifically in the outdoor environment, isn’t just good for a child’s body, it’s beneficial to their mind. Physical activity improves general mood and wellness. Frequent physical exercise is linked to improvements in self-esteem, social awareness, and self-confidence which are all essential for empowering the lives of young people with special needs and disabilities.
Providing a physical space for children to play may help them to better cope with anxiety, stress and depression. The interaction and involvement with other children can give children a sense of accomplishment and confidence. For many children with special needs, developing a sense of self-esteem can be particularly important, as they may often feel isolated and excluded from groups.
The hands-on nature of physical education in the outdoor environment causes cognitive improvements in children with special needs, allowing them to utilise skills that aren’t challenged within a traditional classroom setting. The structure of sport – which comes with a set of rules and organisation — can be an important learning tool that helps children to practice self-regulation and enhance their decision-making skills. On top of that, children with special needs can learn to focus on specific goals, and improve their verbal communication by interacting with their peers through sport.
Physical education is about a lot more than simply learning how to engage in a sport. It teaches children a range of skills, from how to work as a team, to how to solve problems, increase attention span, and focus on task-based behaviour. Eventually, those skills can transfer into other classroom settings and life in the community too, so that children with special needs have a greater ability to learn and engage with their peers outside of physical education.
Scientific research has demonstrated repeatedly that physical education can enhance academic performance and cognitive function. However, for children with special needs, it offers additional benefits, from providing an opportunity to build collaborative and social skills, to teaching individuals how to focus on specific goals and overcome obstacles. As a school, we are inspired to find creative ways to ensure that every child with special needs and disabilities can be successful in physical education and within our supportive school environment.
Children must be provided with a range of platforms and opportunities to engage in activities that support the vestibular processing system. Regular play and exercise on specially-designed equipment that allows children to experience vestibular input — the sensation of any change in position, direction, or movement of the head — requires children to practice classifying, integrating and processing the input.
Of course, the children will have no idea that they’re learning valuable life skills while enjoying themselves. As far as they’re concerned, it’s all about play — and so it should be! But it’s exactly the kind of play that will enable them to better attend to, and cope with everyday functional tasks, giving them a better and more independent future.
Other benefits of a new playground
The Resource Base is in an area of high deprivation. A significant proportion (56%) of local families live in flats. Attending the Resource Base and being able to use the playground may be the only source of freedom and open space that they regularly get to experience and enjoy.
For those who don’t live in the immediate area, many of our children are brought to and from the Resource Base via Council transportation. This journey may take them over an hour, as they stop to pick up other classmates. When they reach the Resource Base, many of them could have been sat down for over an hour. Being able to begin the day with a structured outdoor activity first thing in the morning could be hugely beneficial to their health, wellbeing and progress.
The new playground will also be used in therapy sessions with Occupational Therapists to work on the children’s gross motor skills and develop their sensory diet. These interventions will then be delivered by the teaching team in the new environment.
Outside of school hours, many of our parents are limited to the spaces they can go as a family. This due to their child’s restrictive behaviours and a lack of understanding of risk and danger. Here are two examples:
- A playground that isn’t entirely enclosed with escape-proof fencing would not be safe, as the child could run and many don’t respond to their name, nor stop on command. This could result in a child running onto the road.
- If the child tends to climb then a set of monkey bars may look harmless. However, if your child has no concept of risk or danger, this could be a major hazard.
Therefore, a secure playground that has been specially designed to meet their needs and allows them independence and freedom in a safe environment is an imperative resource for parents and children and a real investment in them now and their future development.
Providing educational resources
Making life better for children with learning difficulties takes more than just activism and advocacy. It also requires investment, which is why we’re working to secure funding for the following:
- An array of useful indoor activity equipment
- The development of a calm area suitable for children with severe and complex learning needs
You can find a breakdown of the costs on our donations page.
Incredible Me is a passion project, founded and run by parents of children who struggle with complex learning difficulties. Our stories below will give you an idea of why we do what we do.
Who am I?
Born in Hertfordshire, I moved to Bristol for university, met my husband in Bristol and have been here ever since.
My background is in finance, the stock market in particular. I worked as an office manager before leaving to go to New Zealand for a year with my husband. When I came back to Bristol I continued working in the same sector I’d previously worked — until I left to have children.
Since having Charlie and Isabelle, I have been concentrating my knowledge gain in areas relating to autism. I have become highly skilled in delivering and understanding speech and language therapy and sensory-based occupational therapy. I have developed a comprehensive understanding of an educational physiologist's role and am now able to actively contribute on a professional level to Charlie’s needs.
Through my own determination, I have learnt about the social benefits system and what parents are entitled to when they have a child with autism. Working with the DWP and Local Authorities is an extremely complex and disheartening experience. Its processes aren’t designed for helping parents and carers of disabled children.
Through this work and fighting for what Charlie and we as a family need to support him and make his home safe for him, I am regularly asked to assist parents in either their pre, during and post EHCP process, filling in forms for Disability Living Allowance, Carer’s Allowance, Blue Badge applications and working with the Local Authority on house adaptations. This is to name a few of the areas that I offer my support.
I have since been recognised by local SEN professionals and recommended as a ‘Parent of Excellence’ to Barnardo’s. Since working with them, I have become known in the autism community. This has seen me working as a parent contributor to the fledgling Autism Diagnosis Hub through looking at ways we communicate to children and their parents or carers and being on the interview panel for a clinical psychologist.
Why is this important to me?
Being a parent of a child with autism is incredibly isolating. You can’t go out on your own or take your children to the park. You’re constantly having to ask if the places you are going have Wi-Fi that’s strong enough, what time you should get there, if they’re going to be too noisy. If you do manage to sit down at a restaurant you spend the whole meal making sure your child is OK — your friends look at each other as if to say “why are we here?”.
I had to manage the constant rejection of academic environments. Holding it together as you leave the office of yet another headteacher who tells you their setting can’t provide your son with the right support. Waiting until you get to your car to allow yourself five minutes of self-indulgence to put your forehead on the steering wheel and cry, before wiping away the tears, blowing your nose and pulling yourself together.
The constant battling with Local Authorities, slipped deadlines, no response from the four emails you have sent this morning and five phone calls to the answer machine. You are fighting for the right setting, for the right support. Is my non-verbal child going to get to see a speech and language therapist? Are they going to have help with their sensory processing problems? Even if you do achieve this you then find out that you have to keep doing it every year for each Annual Review.
Having to negotiate the minefield of the GOV.UK website to find out what benefits you’re entitled to is painful.
Then you have to fill in the Disability Living Allowance application which makes you spell out every last dark detail of negative behaviours — toileting, danger’s they put themselves into on a daily basis. Things you never ever want to say out loud about your child, let alone write it down for people sitting in an office to read. All of this to obtain the right band of funding. It’s never-ending, exhausting and sometimes soul-destroying.
I’m lucky enough to have a supportive husband who is able to financially and emotionally support me in these struggles. We can obtain private diagnoses, second opinions and (when needed) draft in legal support. It is imperative to remember that not everyone has this luxury.
Even so, I felt so alone when I was going through it, no one outside our community could understand, no one could understand why it’s all I could think of day and night, what I would lie awake night after night worrying about. Friends could offer their support and shoulders for a good cry but it’s one of those things in life you have to have lived through to really understand.
Our turning point
It wasn’t until we (I say we as it’s the whole family that joins the Base, not just the child) joined the Resource Base when we felt included.
We were seen as one of the crazy family, not the black sheep.
Nothing about Charlie phased them. There were no sorrowful looks or looks of shame because of his behaviour or how I was managing it. Everyone was so supportive.
Mums would wait at the school entrance to give you a hug because they saw you were having ‘one of those mornings’ and you could then leave knowing that your child was in the very best of care and that they would be able to deal with anything he could throw at them (sometimes literally).
I cannot express how important that is for us as parents. It’s something that is, as they say, ‘priceless’.
Why oh why then am I setting up a charity to support them if they are so wonderful?
Well, it is for these reasons that I’ve become so impassioned to do something about this.
The school feels like it’s stuck in a time warp. We are located within the most deprived 5% of the whole of the country, we are caring and educating children with severe and complex learning difficulties and yet the Resource Base looks destitute.
Why is there such a divide?
Well, put quite simply: money. Or to use the correct term funding.
We, as the Resource Base, are the only resource base that is a standalone entity for children with severe and complex needs.
We are supported by the main government funding for special schools. The number of pupils we educate (bums on seats) from the Local Authority and any pupil premiums from the Local Authority for disadvantaged pupils (the same as mainstream settings).
We get no other additional funding, which is the main difference between an academy Resource Base and a Local Authority provision.
Nothing is left for the additional equipment SEN children need. Outdoor developments, playgrounds, fencing, sensory resources. All of which are fundamental resources to keep our children safe, secure and stimulated to learn.
All of our funding is spent on the staff our children need to support them.
It makes me so furious, broken hearted and therefore driven to do something about it. This led to the creation of Incredible Me!
Hello, my name is Gemma. I live with my partner and our two daughters aged 12 and 6. My youngest daughter was diagnosed with Autism Spectrum Condition - Social Communication Disorder when she was two years and eight months old.
I noticed she wasn’t communicating like her big sister did. I tried to not compare her but once she was walking I couldn’t get her attention. She didn’t respond to her name, didn't point to what she wanted and appeared to be in her own little world — but she was very happy.
The only way I could get her to look at me was by singing our song “Twinkle Twinkle Little Star”.
I contacted the health visitor, but she could not complete a two-year check until my daughter turned two. So, we waited and once she had her two-year check, she was referred to a paediatrician and Speech Therapist. The paediatrician recommended a nursery which I was reluctant for her to attend, but I knew it would help my daughter.
I looked at five nurseries and one manager informed me she wasn’t going to tell her staff about my daughter’s needs — she wanted to see if her staff picked up on it. I replied my daughter needs staff to know all about her from day one. She’s not a test for your staff and my daughter would not be attending there.
I finally found a children’s centre that was knowledgeable and knew of all the interventions my daughter needed.
We had so many appointments. Hearing test, speech therapy and courses to attend to assess my daughter. Seesaw was where my daughter was assessed, and I was told at the last session that the speech therapist was putting forward a diagnosis, but the paediatrician would need to agree. I fell apart, I grieved for my child’s future and what it held for her.
On the diagnosis day, I met with my daughter’s paediatrician and speech therapist and my daughter was diagnosed. I felt numb but I will always remember the paediatrician saying “you will get what you put in”. That day I stopped crying and made it my mission to do all I could to help, support, teach my daughter and to give her what she needs to reach her full potential.
Trying to care for your child/children is a never ending battle. EHCPs, reviews and the forms are never ending. Referrals to services are declined, so you're appealing and trying to get the right support for your child. It’s exhausting but you can't give up, no matter how physically and emotionally drained you feel — this your child’s life and future.
Having a child with autism or additional needs can be very isolating as you cannot just go places. It affects the whole family, including causing siblings to miss out on some of the things they want to do. Sensory sessions are usually monthly and early in the morning. We struggle to find places to go as a family.
Since my daughter started Long Cross Resource Base she has done so well.
There is a lot of love, care and understanding there and we feel welcome — part of something. We have a parent group where we support each other. Staff help us to support our children. We have raised money for resources and organised events with the staff for our children so they can enjoy events tailored to their needs.
But there is so much more that needs to be done to make a difference to our childrens’ lives.
Our children need specialist resources, opportunities, and access to activities/experiences to support their development and reach their best potential.
The parents who contribute to our charity face problems much like ours. They’re passed along their stories to give you even more context.
”Hi, my name is Aimie. I am the mum of a beautiful little boy called Vinnie who attends the Long Cross Resource Base. Vinnie is a cheeky, happy little boy and always puts a smile on anyone’s face.”
”He adores being outside in all weathers and that's why the garden and playground is his favourite place to be. He climbs trees, plays in the mud, sand and water. There are so many sensory things outside that really help with Vinnies learning and play. “
“As he struggles with concentration indoors and can get frustrated very easily, Vinnie is non-verbal has high sensory needs and has trouble sleeping, so the chance to be outdoors in the fresh air and being able to be free to run around and be safe would be vital.”
“My child would benefit massively from an outdoor safe play space. He has autism-social communication difficulties, along with significant sensory seeking and avoidance behaviour.
“A safe place to play would mean she could interact with other children and adults while learning new skills in a safe play space suited to her needs. A see-saw for example would encourage interaction and working as a team.
“My child needs sensory breaks regularly to feel grounded. The classroom can be quite busy and overwhelming, causing sensory overload. A safe space to play would help my child to feel grounded by spinning, swinging or bouncing.
“Most playgrounds aren’t designed around my child’s needs, for example, holding on to the swing chain. My child will be swinging and then let go of the chain, which is problematic — she’s too big for baby swings now.
“My child also falls a lot due to poor balance and lack of awareness. Having a safe play area with appropriate surfaces that reduce bumps, bruises, cuts and injuries would be much safer for her health.
“My child learns a lot through play, gaining valuable social skills. Having a safe play space would benefit my child’s life and wellbeing, providing a safe place to exercise and also enabling her to function better in the classroom after a much-needed sensory break.”
“An outdoor play space is essential for Alfie. This environment will allow him to regulate himself in a wider open space.
“Learning how to socialise with his peers in the classroom is hard for Alfie but we have found that the opportunity to use play equipment like a trampoline, spending time in areas of solace and just being around nature has a calming effect on him.
“Alfie’s stimming generally entails bouncing, flapping arms. A safe outdoor environment will assist him when he returns to the classroom.
“I believe an outdoor classroom area would be amazing for Alfie, especially where therapies like music, water and interactive activities can be included. Interventions like this are key for many children like Alfie. This will assist his independence for learning, but also his social skill and socialisation in an environment that he feels comfortable in.”
“A safe outdoor play space would be invaluable to a child like my son.
“As the mother of a non-verbal child, I rely on facial cues and laughter from my son to interpret his mood. His joy and excitement at outdoor play, particularly physical, is evident and so valuable to him, and us as parents.
“Having play areas which are specially designed and equipped for children with disabilities not only provides a safe place for my son to play, but reassurance for both myself and the staff that care for him.”
“As my son M is under assessment for ADHD beside his ASC diagnosis, having an outdoor safe place can make him release his energy and reduce his stress and anxiety level. M is physical and needs to calm down regularly by moving, jumping or having good fresh air in a safe outside place. This can make him calmer and ready and happy to cope with the surrounding environment’’.
Find out more about how we support children with severe and complex learning needs
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