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Children with additional needs enrich the lives of their family members and caregivers and, like all children, boast a host of wonderful qualities. But it’s also important to recognise that caring for a child with special needs can be emotionally, physically and financially draining for their caregivers. Current figures suggest that there are almost 1.5 million children of all ages in the school system who are recorded as having special educational needs or disabilities.
Caring for children with special needs requires a deep understanding, patience, and empathy to ensure their holistic development and well-being needs are met. So, what are the unique challenges posed when caring for children with additional needs? What support is available for both children with additional needs and their caregivers?
Introduction To Caring For Children With Special Needs
The term ‘special’ or ‘additional needs’ is often used to refer to children who need support to, or are unable to, enter mainstream education. These additional needs often arise as a result of physical disability, mental disability, or behavioural difficulties.
The phrase ‘special educational needs’ is a legal definition and refers to children with learning problems or disabilities that make it harder for them to learn than most. The phrase ‘additional needs’ is a wider umbrella term and refers to children who have a potentially disabling condition, severe chronic illness, or special educational needs (SEN).
Additional needs is not itself a condition or a diagnosis, but a term used to describe a range of conditions and diagnoses. Some children will present with one condition, whilst others will have a range of conditions. This includes children with physical and sensory impairments, learning disabilities and autism, and those who have life-limiting and life-threatening conditions.
Children with additional needs often receive increased medical care and additional support in school, but the vast majority of their care needs are usually taken on by their parents. This can be challenging for parents who are likely to have no prior medical knowledge or caring experience. But where possible, it is important to take a holistic approach to care and support. Caregivers should not only take care of the physical needs of the child but look at all of their needs. What can they do that will enrich the life of the child as a whole? This is a challenging, but valuable and rewarding approach.
Emotional And Psychological Challenges
Raising a child with additional needs can be physically, emotionally and financially draining and over time, this can take an emotional toll on caregivers. Caregivers often report feelings of stress, anxiety, guilt or inadequacy.
Couples who have children with additional needs often report the presence of marital problems to a greater degree than as a result of the lack of time available to nurture the marriage in addition to the frequent problem of parents disagreeing on what needs to be done for the child.
Caregivers of children with additional needs care for their children around the clock, and the constant physical and emotional toll of always being ‘on the job’ can lead to extreme fatigue and burnout. Although dealing with these is very challenging, this is a normal part of caring for a child with additional needs and many caregivers find it helps to realise that other caregivers face the same challenges and feel the same way. Many also find that support groups for caregivers to children with additional needs are a great source of strength and support.
These groups provide a place to find emotional support and social connection. Many caregivers find the opportunity to share their struggles face-to-face with other parents cathartic. From a practical point of view, parents can also use these sessions to share what strategies or services have proven helpful to their child. Your local council may be able to provide details of parent carers groups in your area – find your local council on GOV.UK.
If you are unable to attend an ‘in-person’ support group then there are a host of online forums where caregivers to children with additional needs can meet and provide virtual support to each other. Often caregivers of children with additional needs are unable to attend in-person meetings as they have no one else available to care for their child. Whilst some caregivers can access respite care, the provision for this tends to be woefully inadequate in the UK. And whilst parents of children without additional needs can book a sitter, this is rarely an option for caregivers to children with additional needs because the typical sitter lacks the skills and knowledge to meet the child’s needs.
Physical Demands and Safety Considerations
Because the term ‘children with additional needs’ is an umbrella term that covers so many different conditions, the challenges involved in caring for these children will vary from caregiver to caregiver. For some, the greatest challenge will be the physical demands involved in caregiving, such as lifting, transferring, and assisting with daily activities. As the child continues to grow, this challenge will grow: the heavier a child is, the harder they become to lift and assist without support.
Any young child will need help with self-care tasks such as dressing, toileting, washing, feeding and moving about. But in older children, providing this level of care can take a physical toll.
As a caregiver, however, it’s important to look after your own needs and focus on creating a safe environment where potential hazards are assessed and any physical demands are minimised as much as possible. After all, if you damage your back then who will take care of your child’s physical needs? It’s important to consider taking care of your own health to be vital if you wish to take care of your child’s needs in the long term.
Modern technology is a wonderful thing, and there is now a wide range of adaptive equipment and assistive technologies to aid in caregiving. Don’t be afraid to discuss this with your care team, particularly if you feel the demands of caregiving are becoming physically challenging. When a child becomes too big to lift into bed, for example, a hoist could be installed to help with the lifting process. Similar devices can be installed in the shower to make washing less physically demanding.
Communication Barriers And Alternative Communication Methods
Some children with special needs face communication challenges. They are unable to communicate clearly or directly and need additional support to express their needs. If this is the case, then caregivers should work to establish alternative communication methods that will enable them to engage with and communicate with the child or children they are caring for.
Some examples of alternative communication levels that children with additional needs may be able to utilise successfully include sign language, picture communication systems, and augmentative and alternative communication (AAC) devices.
Exposure to communication is a key element for learning, so even if your child cannot yet communicate with you, it is important to keep talking to them and exposing them to language as much as possible. Reading is a great tool for this, and for children who do face linguistic barriers, colourful picture books can be a good choice.
The needs of every special needs child are different, but finding an effective communication method and understanding the child’s needs and preferences is vital to enriching their lives by forming a channel by which you can understand their needs.
Financial Burdens and Limited Resources
One of the most significant challenges faced by caregivers of children with additional needs is the additional financial strain that this brings. It is estimated that the cost for parents of raising a disabled child is three times higher than that of a non-disabled child. The extra spend includes items such as home adaptations, childcare, household bills, transport costs and medical bills. Even items such as specially adapted clothing, toys or mobility aids are more expensive when they have been modified to meet the needs of children with additional needs.
What’s more, in many households where a child has additional needs, one parent may need to stop working to provide full-time care and support to that child, effectively cutting the household income in half. Whilst specialist services, therapies and equipment to support these parents are available in the UK, access and availability are often limited in a public capacity. Many parents take on the financial burden of providing these items themselves because they want to give their children the tools they think may support them the most.
There are financial assistance programs and community resources that may help to alleviate the financial burden of raising a child with additional needs. Disability Living Allowance (DLA) for children is a government benefit that helps with extra costs if you are looking after a disabled child. The DLA rate is between £24.45 and £156.90 a week, depending on your individual circumstances.
As a carer, you may also be entitled to a carer’s allowance if you care for your disabled child for more than 35 hours per week, and you earn less than £132 a week.
Access To Appropriate Educational And Healthcare Services
All parents want the best for their children, and for their children to have access to the same educational and social opportunities as everyone else. However, parents of children with additional needs can face significant challenges in accessing inclusive and appropriate educational opportunities.
Children with additional needs often lack the tools, communication skills or depth of understanding to advocate for themselves, so this role falls to their caregivers. And it is vital that caregivers take the time to advocate for the child’s rights and support them in navigating the healthcare system. The system itself doesn’t always make that easy: supporting a child with additional needs is paperwork heavy, restrictive and unnecessarily complicated.
Advocacy for children with additional needs can take many forms. It can mean insisting that the child sees a doctor when you are told an appointment isn’t necessary. Making and attending regular meetings with their school’s SEN coordinator to ensure that they are reaching their full potential and getting all the support they need. And ensuring that the child is receiving the financial support they are entitled to.
Websites such as Action for Children and SEND Advocacy are valuable tools for parents that are struggling with the advocacy process, and feel their child isn’t getting all the support and funding they are entitled to. If you are struggling to secure financial support with your child, and need help filling in the many, lengthy forms required to secure financial support to meet your child’s needs, then the Citizens Advice Bureau can also help.
Coping with Societal Stigmatisation and Lack of Understanding
Unfortunately, there is a lack of understanding and societal stigmatisation surrounding children and adults with additional needs. In the most basic terms, people tend to shy away from what they don’t understand. This can be understandably upsetting and challenging for the caregivers of these children.
Children with disabilities face widespread stigma and discrimination based on deeply rooted negative perceptions about disability. But it’s important to note that disability is not an inability: children with additional needs may need additional support in some areas, but they are no different from any other child. Children with additional needs are often perceived as weak, but in reality, dealing with the challenges of their additional needs makes them stronger.
Many caregivers of children with additional needs work to combat societal prejudices and foster inclusivity. Strategies for combatting prejudice and stigma include raising awareness, promoting understanding, and advocating for acceptance.
Support systems and Self-Care for Caregivers
No man is an island, and everyone needs a support system, particularly when they are dealing with challenging situations. But sadly, being a caregiver can be a very lonely experience. Many carers spend much of their time alone, except for the company of the person they are caring for. This can lead to increased rates of depression, anxiety and burnout.
For this reason, it is important that caregivers build a support network. This could include friends and family members who are able to provide respite care, or even just a listening ear when you need a break. A support group of other caregivers for children with additional needs who can understand and empathise with your lived experience. You could even find a support network online if you find it easier to talk to strangers or find it hard to verbalise your emotions.
Other self-care strategies to consider if you are caring for a child with additional needs include:
- Take advantage of any respite care opportunities you are offered. It does not make you a bad caregiver to take time out to care for yourself. You can’t fill from an empty cup, so take time to fill your cup as often as possible!
- Find a hobby you enjoy that you can do inside the house. It won’t always be possible to get to the gym: but could you try doing workout videos in the living room? If you enjoy crafty activities, why not buy a sewing machine? Taking time to do something for yourself, even if it’s just for a few minutes a day, can be incredibly restorative.
- If you have a partner, schedule time to spend together. Couples of children with additional needs often report increased marital issues, because their primary focus is on their caring responsibilities. Putting these to one side to watch a movie, or to have dinner together without talking about your children, can strengthen your bond.
Raising children with additional needs is a wonderful and enriching experience, but it also comes with its own unique challenges. Raising a child with additional needs can be more emotionally and physically demanding, in addition to being a bigger financial burden than raising a child without additional needs.
It is important to utilise empathy, support, and understanding in providing quality care and improving the overall well-being of both the child and the caregiver.
There is no easy solution to make caring for a child with additional needs less challenging. But it is important to acknowledge that this is an incredibly difficult job and one that is undertaken with dedication and love. Society as a whole should take the time to understand the challenges faced by those caring for children with additional needs and to recognise and appreciate the incredible dedication and resilience of caregivers in this vital role.
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