Caring for disabled children: tips for raising superstars
The beauty and the challenge of parenting means you often have to think on your feet and adapt your style according to your child’s needs. Some children might need more specific parenting adaptations and that can be tricky, especially if you’re not prepared.
However, these challenges often bring out extraordinary resilience and creative problem-solving skills. In every sense, you’re well on your way to becoming the best parent your child could ask for. So, below are some tips on caring for disabled children and raising superstars!
Understand the disability
One of the first things you should do is understand the specific disability your child has. You can regularly consult with therapists, doctors and specialists to ensure you’re up to date with care techniques and other necessary interventions.
Build a nurturing environment
A home isn’t just a dwelling, it’s a space, a playground, and a classroom all rolled into one. Below are some tips on how to build your environment around your child.
Adapt your home and travel
Ensuring your home is accessible is essential. Consider adaptations like wheelchair-friendly ramps, safety gates, or sensory-friendly spaces. Just as you tailor your home environment for ease and comfort, the same should apply to your travel arrangements too.
There is the option to hire a mobility car from Allied Mobility that can transform routine family outings and school runs. Their wheelchair accessible vehicles are widely available and give you the freedom and flexibility to go where your family adventures take you without restrictions.
Structured routines
Maintaining a consistent routine can provide comfort, control, and predictability in an otherwise very unpredictable world for your child. Below are some tips on how to create realistic routines that work for your child’s needs.
Start with the basics
Start with the basics like setting regular waking times, mealtimes and bedtime hours. These set times can help with any sensory or sleep issues. Then you could consider creating visual schedules using pictures or icons, especially for children with communication challenges.
Plan regular meals and snacks
You could create a structured eating schedule which can prevent hunger-induced meltdowns and maintain energy levels. If your child has any dietary needs or sensory aversions, you can incorporate these into the meal plan.
Incorporate therapy and medication
Incorporate therapy and medication into your routine by creating a checklist or chart to track the sessions/doses.
Allocate time for physical activity
Allocate some time for physical activity, depending on your child’s abilities. You can include light exercise, outdoor time or specific physical therapies in the routine. Activities like swimming, walking or adaptive sports can be beneficial.
Designate quiet/rest times
Periodic breaks can help children reset and avoid overstimulation. This is especially crucial for those with sensory processing disorders or ADHD.
Include educational activities
If your child goes to school, then you can create routines around homework and study times. For home-schooling/remote learning, create an educational timetable and break the tasks into manageable chunks, with breaks in between.
Consider games at home which develop the brain and encourage creativity.
The Connetix Pastel Creative Pack* is a fantastic toy that helps kids have fun while they learn. This pack has 120 pieces in soft, pretty colours that are perfect for building all sorts of things like big castles, cool rockets, and tall towers. Playing with these pieces is not just fun; it’s also good for the brain! Kids can play alone or with others, and while they play, they learn about science, technology, engineering, art, and math (STEAM).
Building with these pieces is also great for little hands and bodies, helping children get better at moving and controlling what they do. They will also learn to solve problems and keep trying even when building gets tricky. This toy grows with your child, getting more fun as they learn and can build bigger and better things.
Here are some cool things about the Connetix Tiles:
- Kids can use their imagination to make anything they dream up.
- Playing with the tiles helps with coordination and using hands and fingers.
- It’s a fun way to learn about different subjects like science and math.
- Kids learn to think about how to fix problems and to keep going when things are hard.
- The tiles can be used in so many ways, so kids never get bored.
- Building with tiles also helps kids understand space and shapes.
- The magnets in the tiles introduce kids to how magnets work, which is part of learning about science.
This Connetix Pack is a great way for kids to have a good time while they’re also learning important skills. The price for this set is £115, and it’s available from Connetix.
Schedule social interactions
Create opportunities for your child to socialise via playdates, group therapies, or other inclusive activities.
Incorporate free time and wind down time
Unstructured play is very important, so allow your child to choose their activity and foster their independence and decision making. Then you can establish a calm bedtime routine that could include some reading, light music or relaxation techniques to signal the body it’s time to rest.
Consider using sensory tools that might help your child relax, like weighted blankets and night lights.
Stay flexible with your structured routine
Routines are essential, but it’s also equally crucial to adapt where you can if something isn’t working or causing stress. Observe your child’s cues as they’ll often show where in the routine it isn’t working or when it needs some tweaking.
Involve them in the routine as they grow and develop and let them have a say. This encourages autonomy and a sense of control. Communicate the routine continually throughout via visual aids like schedules and apps. Timers can also be very useful.
Remember consistency is key for a routine to work, but every child is different, so keep the routine flexible with room for growth and tweaks when needed.
Promote inclusive activities
Integrating your child into the ‘real’ world is massively important for their personal development. You can do this by enrolling them in group activities or classes which encourage social interaction and physical activity, as mentioned above.
Work closely with educators and schools to make sure your child is included in activities too. This is very important as your child should not be discriminated against if they can take part.
Strengthen your child’s emotional wellbeing
Your child’s mental health is integral to their overall development. Here are some tips on how to strengthen your child’s emotional wellbeing.
Create open communication
No question is too big or small. It’s vital to create an open dialogue with your child about their disability, answering any queries, so they can understand and process.
Use simple language and encourage your child to express their feelings and concerns. Have patience and be honest with them about their strengths and weaknesses. By making disability a part of normal conversation, you foster understanding and acceptance in your child’s mind. Just remember, it’s fine not to have all the answers. The only thing that matters is that you’re making the effort to communicate with them.
Offer therapeutic outlets
Therapies such as art, music and equine therapy can offer that much-needed extra emotional support, alongside a nurturing environment at home.
Understand your rights
Depending on the country you live in, you will have various laws and regulations protecting you and your child. In the UK, the Equality Act 2010 offers support for parents of a disabled child and ensures that disabled individuals, including children, are not discriminated against in areas including education, employment and accessing services. We’ll go through some of yours and your child’s rights below.
A right to education
Every child has a right to an education suitable for their needs. If your child has SEN, then they may have or apply to have an Education, health and Care Plan (EHCP), which details the support your child should get. You have a right to request an EHC assessment, although the waiting list in the UK is long.
Most children with SEN can attend mainstream schools, but there are also special schools tailored to their needs.
Health and social care
You may request an assessment of your child’s health and social care needs. If the local council agrees you need services, you may ask for direct payments to buy those services yourself.
Financial support
You can claim Disability Living Allowance (DLA) for your child under 16 if they have mobility issues and need extra care. You can also claim Carer’s Allowance if you spend at least 35 hours a week caring for your child. Look on the government’s website for more details on the benefits and how to claim.
Transport support
Some local councils provide free support for disabled children to and from school.
Respite care
You may request respite care, which provides a short-term break from caring duties. This can be at home, a day centre, or in overnight accommodation.
Participation and decision-making
You may be involved in decisions about services that affect your child. This includes discussions about health, education and social care plans.
Support for carers
Local authorities are required to assess the needs of carers who might need support in their caring role. If you meet the criteria, you may receive services or financial assistance to help look after your child.
You also may make complaints if you are unhappy with the service or treatment your child receives, as all agencies working with your child may safeguard and promote their welfare. This includes protecting them from bad treatment, and making sure they receive safe and effective care so they have the best chances in life.
Don’t forget that your child’s personal data, which includes medical records and school reports, are protected by the Data Protection Act, which means they must be kept confidential and can only be accessed by those with a legitimate reason.
Foster independence
Invest in adaptive tools like communication devices, mobility aids or specially designed utensils that can help your child perform their tasks independently. Regularly assess their abilities and work with healthcare professionals, teachers and therapists to understand what these tools would be. Some charities offer financial help on investing in tools to use at home.
Set achievable milestones for things like learning a new skill or taking on a household chore and encourage your child to make choices in selecting their own clothes, meals or activities. This promotes autonomy and builds on those important life skills.
The UK has many organisations and charities that provide training and programs to support disabled children in becoming more independent. Examples include the National Autistic Society and Scope.
Financially plan your journey
Looking toward the future may seem daunting, but it’s an essential part of being a proactive parent. Whether it’s setting up a savings account for your child’s education, or planning for potential changes in your child’s physical needs, forward-thinking is crucial.
Planning your medical care, therapies and other necessities in the long-term will help you budget and plan your finances accordingly. Learn about financial supports for children with disabilities and explore grants, scholarships and assistance programs available for disabled children.
Practice self-care
Caring for disabled children can be emotionally and physically taxing, so taking time for yourself can help you get that much needed respite to boost your wellbeing. Look into support groups and/or counselling to help with managing daily duties. Carers have access to adult wellbeing services, but it’s important to speak to your local council to see what kind of support is available for you.
Celebrate every milestone
Every achievement, large or small, is a testament to not only your child’s resilience but to your unwavering support. Always celebrate your milestones by using prompts or capturing memories via a journal, an achievement board or pictures and videos and go easy on yourself. You’re doing the best you can and minor setbacks are temporary.
Stay updated with new resources on caring for disabled children
Continuously update yourself on the latest research, therapies and technologies that might benefit your child and stay on top of the support available for you too. Every little bit helps to keep going.
As hard as it is to parent children with additional needs, it’s important not to compare your unique journey with others. With a whole lot of patience, understanding and love, you can embrace the sometimes arduous but rewarding journey with your child and cherish every moment you have with them when raising your superstar. You are their safe space, so treat yourself as special too. Because you are!
FAQ
What are the 3 challenges parents face with a special need child?
Raising a child with special needs presents a unique set of challenges, and while every family’s experience is unique, there are some common challenges many parents face, particularly in the UK. Here are three such challenges:
Access to education and support in school
Even with the UK’s Special Educational Needs and Disability (SEND) system in place, parents often struggle to receive the right support for their child in mainstream schools.
Obtaining an EHCP can be a lengthy and bureaucratic process, and not all children who need support will qualify for one.
There might not be enough specialist schools or places available, resulting in children sometimes having to travel long distances or attending a school that might not be the best fit for their needs.
Navigating health and social care services
Getting an initial diagnosis for a child’s special needs can be a long process, with families often facing long waiting times. This delay can prevent children from accessing the services and support they need at crucial developmental stages.
As children grow older and transition from child to adult services, there can be gaps in care or reduced support, which can be challenging for families.
Once a diagnosis is given, parents may feel lost or isolated, not knowing where to go next for advice, support, or therapeutic services.
Social and emotional challenges
Parents might feel isolated because of a lack of understanding or stigma from others about their child’s needs. This can lead to reduced social interactions and support.
Caring for a child with special needs often involves extra expenses, from specialised equipment to therapy sessions, which can place a financial burden on families.
The continuous advocacy, combined with daily caregiving tasks, can lead to physical and emotional exhaustion. Parents may also grapple with feelings of guilt, worry, or grief related to their child’s diagnosis.
While these challenges exist, many parents of children with special needs also speak of the unique joys, insights, and deep connections that come with their parenting journey. And, many organisations and support groups exist in the UK to assist families in navigating these challenges.
What are the benefits for parents caring for a disabled child?
In the UK, parents or carers of disabled children have access to a range of benefits and support services. The available assistance helps reduce the financial strain and offers respite resources, so families can lead a more manageable life. Here is a general overview of some of the benefits available:
- Disability Living Allowance (DLA) for children: This is a tax-free benefit for children under 16 to help with the extra costs caused by long-term health conditions or disabilities. There are two components – a care component and a mobility component – and the child might be eligible for one or both.
- Carer’s Allowance: If you spend at least 35 hours a week caring for a disabled child who receives the highest or middle-rate care component of DLA, you might be eligible for this benefit.
- Carer’s Credit: This is a National Insurance credit that helps with gaps in your National Insurance record, ensuring that you can still qualify for certain benefits and the State Pension.
- Council Tax Reduction: Depending on your circumstances, you might get a reduction in your council tax. For instance, if you have an extra room or a space for the child because of their disability, or you’ve had to make modifications to your home.
- Blue Badge Scheme: This scheme provides special parking privileges for families with children who have severe mobility problems.
- Direct Payments: These are given by local councils to help you arrange and pay for your own care instead of receiving them directly from the local authority.
- Short breaks and respite care: Many local authorities provide schemes offering parents and carers of disabled children a break from their caring responsibilities.
- Sure Start Maternity Grant: If you’re expecting a baby or have given birth or adopted a baby in the last 6 months, and there’s no other child under 16 in your family, and you or your partner are receiving certain benefits, you might be eligible for a one-off payment of £500.
- Free NHS prescriptions and dental treatment: If your child receives the DLA or is named on a valid NHS tax credit exemption certificate, they may be eligible.
- Educational support: Disabled children might also receive additional support in school settings through an Education, Health and Care Plan (EHCP).
- Home adaptations: Grants like the Disabled Facilities Grant might be available to help make changes to the home to make it more accessible.
This is not an exhaustive list, and there may be other region-specific benefits or schemes available. The rules, eligibility criteria, and specific benefits can change over time. Therefore, it’s essential to check with local authorities, the Department for Work and Pensions (DWP), and relevant charities or organisations for the most recent and comprehensive information about available assistance.
How much is carers allowance for disabled child?
Currently carer’s allowance is offered in three components; lowest, middle and highest rate. The current rates are below:
| Care component | Weekly rate |
|---|---|
| Lowest | £26.90 |
| Middle | £68.10 |
| Highest | £101.75 |
How does a nursing shortage affect families with disabled children?
A nursing shortage can have a broad range of implications for healthcare delivery. There may be decreased access to specialised care, increased wait times, overburdened nurses and increased financial strain on families who might need private nursing care or therapy because of the public system’s inadequacies, which leads to higher out-of-pocket expenses.
There may be limited respite care and increased emotional stress as well as potential burnout for family caregivers.
Given these challenges, it’s essential for healthcare systems and policymakers to address nursing shortages proactively. Strategies can include increasing educational opportunities for nursing, offering incentives to work in underserved areas, and promoting the profession to ensure a steady supply of qualified nurses in the future.
So how do you handle adult children who can’t take care of themselves due to social anxiety and bipolar disorder?
Handling adult children who struggle with significant mental health challenges such as social anxiety and bipolar disorder requires compassion, understanding, and proper medical and therapeutic intervention. Professional treatment, psychiatric evaluation and therapy are important to manage BP and SA symptoms.
A regular, predictable routine is important for people with BP to reduce unpredictability and chaos from manic or depressive episodes.
As a carer, you should educate yourself and learn more about how to offer understanding and support. There are many resources, both online and offline, to help you understand these conditions better.
Each individual’s needs will vary, so it’s crucial to adapt this guidance to your child’s specific situation. Working closely with professionals and therapists will ensure you’re taking the most effective steps to support and care for your adult child.
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