On average it takes 2 years to identify as a carer. Carers of children often fail to recognise the additional support they’re providing their child, seeing it as part of their normal duty as a parent. Initially identifying themselves as a carer is often the first barrier in terms of getting support.

If your child is missing milestones such as walking or talking, you should be communicating this with your paediatrician. This does not mean your child has an illness or condition but this can be an early sign of a difficulty they may face in later life.

If this is the first indication, then this is also the first opportunity to start becoming more aware of your rights as a carer and your child’s rights as someone who needs more support.

Reach out to charities specific to carers like Carers Wales and to condition specific charities if you have a suspicion you know what condition your child might have.

If your child does receive a diagnosis, then you should inform your family, your GP and start communicating with their school.

You should also ask for the latest information from carers charities and condition-specific charities, so you have the latest information on your rights and what you are entitled to as a carer of a child.

Carers of children tell us that they encounter obstacles in accessing appropriate support from schools and understanding the structure of educational assistance for their children. Teaching staff may lack knowledge, leading to delayed intervention and support. Transitioning from mainstream to specialist schools can pose a challenge, and many parents felt overwhelmed navigating the educational system.

The first step is to communicate with the School:

• Request a Meeting: Arrange a meeting with the school's Special Educational Needs Coordinator (SENCO) or the headteacher to discuss your child's needs and the support available.

• Provide Information: Share detailed information about your child's condition, including any medical reports or educational assessments, to help the school understand their needs.

This should lead to one or multiple of these scenarios:

Individual Education Plan (IEP):

• Work with the school to develop an IEP, which outlines specific learning goals and the support your child needs to achieve them. This plan should be reviewed regularly.

Special Educational Needs (SEN) Support:

• Ensures that your child is receiving SEN support if they have been identified as needing additional help. This may include tailored teaching strategies, classroom aides, or specialized equipment.

Education, Health, and Care Plan (EHCP):

• If your child's needs are more complex, apply for an EHCP through your local authority. This plan provides a comprehensive outline of the education, health, and social care support your child requires.

These processes will put in support for your child. This could be a teaching assistant providing additional support as part of a group, this will be define as 1 to a number of students. This could be 1 to 1 support where your child gets personal support from one teaching assistant all to themselves.

These support plans can support in other ways. They may need a quiet room for when they get overwhelmed, more time to do work if they struggle to concentrate or additional food or drink breaks if they need to eat or drink for medicines.

The system in Wales is student led and their needs should be accomodated to support them having the most success they can within their schooling time.

Know Your Rights:

Familiarise yourself with the Welsh Government Charter for Unpaid Carers in Wales. This document outlines your legal rights under the Social Services and Well-being (Wales) Act 2014.

Seek Information:

Your local authority must provide information, advice, and assistance about support services. Make use of this resource to find and access the services available to you and your child.

Request an Assessment:

You have the right to a carers’ needs assessment. This assessment helps identify the support you need and how the local authority can assist you. It is not affected by your financial situation, but you may be asked to contribute to the cost of support.

Advocate for Your Voice:

During the assessment, express what matters to you as a parent carer. Your input should influence decisions about your support. Link to self advocacy guide

Early Intervention:

Seek support from your local authority as early as possible as there can often be a wait to be assessed.

Explore Financial Assistance:

Apply for grants if available. Speak to your local carers support service or use a tool like Turn2Us grant search.

Connect with Support Groups:

Join local support groups or online communities.

Connecting with other carers can provide emotional support and practical advice.

Stay Informed:

Keep up-to-date with any new support packages or initiatives.

Anyone with a child knows that their relationship with their partner changes intrinsically. However, the challenges of having a child with a disability can strain a relationship in unique and devastating ways that cannot be foreseen.

Despite these challenges, many couples find strength in their relationship through mutual support, understanding and sharing the caring experience.

Remember it’s difficult for both of you

It doesn’t matter how old your child gets, there will be times when their disability or the situation you find yourself in, can get you down. This may happen at the same time but often happens individually.

It’s okay to ask for extra help and you need to listen when your partner requests the same. It may not even make sense to you. Different people will have different triggers. It can be difficult to find empathy when these situations occur especially when they seem inconsequential to you.

You are a partnership so, sometimes, one side has to pick the other up. If you feel like they are not reciprocating, then you need to communicate this with your partner. Perhaps they have not realized how strongly they are relying on your strength and do not see that you are in need of some of theirs.

Just remember you are in this together.

Our guide Caring for a Child contains helpful tips and suggestions of how to cope with relationship strain.

Puberty is often a taboo subject for many carers of children. There can be a lack of guidance and support navigating this delicate situation which can lead to feelings of inadequacy and frustration.

Children with illnesses or disabilities may experience puberty in different ways which further complicates matters.

This does not mean they do not experience body changes, sexual desires or social or physical awkwardness but they may interpret these feelings in different ways. This is particularly common for children on the autism spectrum who’s bodies may be more disrupted by hormone imbalances that can lead to depression or hyper activeness.

There isn’t a single way to approach puberty with a child with an illness or disability. You are the best person with the best place judgement of what they are and are not ready to understand and cope with.

See our guide Caring for a Child for tips on how to deal with puberty 

Parent carers can often feel fear and uncertainty regarding the transition from children’s social services to adult services. A lack of information, poor communication, and fear of losing vital support services can be major concerns.

It may be helpful to know that there is no single point of transition. The change from childhood to adulthood services should be a gradual one.

Ideally, the transition should begin during your child’s early teenage years.

They should be supported by a named worker who should consider what support they will need as part of a review including:

• your child’s health
• their emotional and communication needs
• their mental capacity (ability to make their own decisions)
• any peer support, coaching or mentoring they need
• their ideas and plans for the future
• any advocacy needs.

Further information is available in our guide  - Caring for a Child

Parent carers often struggle with the complex decision of transitioning their adult disabled children into independent living or long-term care. Concerns about losing connection with their children and a mistrust of care services are common. Discussion around care options, involving family members, and creating transition plans are essential but can be challenging.

All adult children should be introduced to independent living / respite early on so they get used to and even excited about their ‘holidays’

How someone should be cared for should be discussed on a frequent basis

If anyone in the family is expected to help, this should be discussed with them and a new plan has to be formed if they choose to opt out

A transition plan should be made when the carer gets to a certain point of age, to ease the transition of the child.

Caring for a sick or disabled child can be physically and emotionally demanding. It's crucial to prioritise your own well-being to continue providing the best care for your child. This section offers practical self-care tips, resources for mental health support, and strategies for managing stress and burnout.

1. Seek Support Groups and Networks:

Join local support groups and networks specifically tailored to carers of disabled children. These groups provide a supportive environment to share experiences, seek advice, and access valuable resources.

2. Advocate for Improved Services:

Collaborate with other carers to advocate for improved services and support systems for disabled children and their families. This can include lobbying local authorities and policymakers for better access to education, healthcare, and social services.

3. Utilise Available Resources:

Familiarise yourself with available resources, such as Carers Needs Assessments, support organisations, and online platforms offering guidance and information for carers. Stay informed about eligibility criteria and application processes to access necessary support.

4. Build Relationships with Professionals:

Foster positive relationships with healthcare professionals, educators, and social workers involved in your child's care. Effective communication and collaboration can facilitate access to appropriate services and support.

5. Educate Yourself:

Take advantage of training workshops, seminars, and online courses aimed at enhancing your knowledge and skills in caring for disabled children. Empowering yourself with relevant information can help you navigate challenges more effectively.

6. Prioritise Self-Care:

Make self-care a priority by carving out time for relaxation, hobbies, and social activities. Remember that taking care of yourself is essential for maintaining your well-being and resilience as a carer.

7. Seek Financial Assistance:

Explore financial assistance options available to carers, such as carer's allowance, disability benefits, and grants. Understanding your entitlements and accessing available financial support can alleviate financial strain.

8. Peer Support:

Connect with other carers through peer support initiatives, where you can share experiences, offer mutual support, and exchange practical tips for coping with the challenges of caring for disabled children.

9. Stay Informed and Proactive:

Stay informed about policy changes, developments in disability rights, and opportunities for advocacy and activism. Being proactive in staying abreast of relevant issues can empower you to advocate for change and contribute to improving the support available to carers.

10. Access Respite Care:

Utilise respite care services to take breaks from caring responsibilities and recharge. Respite care can provide you with much-needed rest and relaxation while ensuring your child's needs are still met.