When you are always fighting for your child

The impact of parenting a child with additional support needs

Parenting a child or young person with additional support needs can involve a level of advocacy that can feel like it takes more effort than caring for your child.

Whether your child is autistic, ADHD, has learning disabilities, sensory processing differences, mental health difficulties, chronic health conditions, an EHCP, attendance difficulties, physical differences and medical needs, or other additional support needs, you may find yourself attending meeting after meeting, explaining your child's needs to new professionals, completing forms, chasing assessments, requesting reasonable adjustments, challenging decisions and trying to work out what support your child needs next.

And while you are doing all of this, you are still trying to be their parent. It is possible to love your child deeply and be incredibly proud of them, while also feeling exhausted, angry, frightened or completely overwhelmed by the amount of energy it takes to secure the support they need. Sometimes it can feel as though you are constantly fighting for your child.

Research suggests that parents and carers of children with additional support needs experience significantly higher levels of stress than parents of typically developing children, particularly when support is difficult to access or when they are required to navigate multiple systems on behalf of their child (Hayes and Watson, 2013; Cheng and Lai, 2023). This may be something you already intuitively know.

When advocating becomes exhausting

Advocating for a child can be an important and necessary part of parenting. But when support is difficult to access, parents and carers can find themselves spending enormous amounts of time navigating systems that were supposed to help their child. There may be school meetings, EHCP reviews, assessments, referrals, waiting lists, professional reports and difficult conversations. These can operate in a legalistic way meaning that without the right paperwork, and evidence from the right professional, support may not be provided even if it seems obvious that the help is needed. It can be agonising waiting for help due to the need to navigate the system.

You may have to explain the same things repeatedly:

• What your child finds difficult.

• What helps them to regulate.

• Why something that appears straightforward to someone else may be extremely difficult for your child.

• Why attendance, communication, behaviour or independence cannot simply be solved by asking your child to try harder.

• Why what works for another child may not work for yours.

Over time, this can be exhausting, frustrating and feel like it is getting harder and harder to do.

Research examining parental experiences within SEND systems has found that many parents feel they must become persistent advocates to secure appropriate provision for their children, often at considerable emotional cost to themselves and their families (Saxton et al., 2025).

You may begin each new conversation determined to stay calm and constructive, only to find yourself becoming increasingly frustrated when you feel that your child's needs are not being understood.

And then you may go home and wonder if you whether if you had handled things in several other different ways the outcome might have been better or happened quicker. This second guessing can come about because whatever we do it can feel like if only we had tried another way maybe that would have worked. Sometimes, services can feel like they are blaming parents and families and we can feel we need to justify our own actions.

The emotional cost of being the parent who has to keep going

Parents and carers of children with additional support needs often experience a complicated mixture of emotions. There may be anger when your child's needs are dismissed or misunderstood.

There can be grief for the childhood experiences, opportunities or future expectations you once imagined and because life feels so much harder for your child. There may be guilt, perhaps wondering whether you should have noticed things earlier, advocated differently or done more. There can be fear about what will happen as your child grows older and how they would manage without you one day.

There can often be loneliness, particularly when friends, family members or professionals do not fully understand the realities of your daily life. And there can be profound exhaustion and burnout.

Research consistently shows elevated rates of psychological distress, stress, anxiety and social isolation amongst parents and carers of children with disabilities and neurodevelopmental differences (Bonis, 2016; Purpura et al., 2021).

Sometimes the exhaustion is not simply physical. It is the exhaustion of constantly thinking, planning, anticipating and problem-solving. You may rarely feel that you can completely switch off.

Even when things are relatively calm, part of your mind may be thinking: What happens next? What if the support stops? What if school cannot meet their needs? What will happen when they leave school? Who will help them when I'm not there?

When your child's needs begin to take over your whole life

When a child needs significant support, it can be very easy for the needs of parents to feel secondary to the immediate challenges in front of you.

Your child and what they need always come first and, since your child may not have all of the support they need you can find yourself providing support in replacement of professional support alongside everything else. This can mean reduced social opportunities, limited time to yourself, and a feeling you have lost control as your are constantly either ‘on duty’ or ‘on call’ for when your child needs you.

You may even find yourself thinking: "I don't really know who I am anymore apart from being their parent." It means that you are carrying a great deal.

Studies have found that social support, practical support and professional understanding can act as protective factors for parents and carers, helping to reduce stress and improve wellbeing (Cheng and Lai, 2023; Hsiao, 2018) albeit these supports can be hard to access.

"But my child needs me"

One of the hardest things for parents and carers can be giving themselves permission to look after their own emotional wellbeing.

You may think:

"How can I focus on myself when my child needs so much?"

Or:

"Other people have it worse."

Or:

"I just need to keep going."

But constantly running on empty is not sustainable. Looking after yourself does not mean putting your child's needs second. It means recognising that your capacity and wellbeing matter as it is with sufficient energy and ‘thinking space’ that you can put down some of the worry for a period of time. You deserve to acknowledge how hard things have been without having to justify those feelings.

You can advocate for your child without losing yourself

Advocacy is often an important part of parenting a child with additional support needs, but living in constant battle mode can be exhausting. Finding a balance between supporting your child and protecting your own wellbeing may involve recognising when you are overwhelmed, accepting help from others, setting boundaries and having a safe space to process the emotions that can come with being your child's advocate.

You don't have to do this perfectly

There is no perfect way to parent a child or young person with additional support needs. There will be times when you get things wrong, lose your patience, feel hopeful or feel completely overwhelmed. That does not make you a bad parent. Your child does not need perfection; they need a parent who cares, keeps learning and recognises their own needs too. Alongside asking, "What does my child need from me?", it can be equally important to ask, "What do I need in order to keep going?" Looking after yourself and supporting your child are not competing priorities; both matter.

The value of connection

Research suggests that social support is one of the most important protective factors for parents and carers of children with additional support needs. Parents who feel understood, supported and connected to others often report lower levels of stress and greater psychological wellbeing (Cheng and Lai, 2023; Hsiao, 2018). Strong social connections can provide emotional support, practical help and reassurance that you are not facing these challenges alone.

Connection does not have to mean having a large support network. Sometimes it is about having one or two people with whom you can be honest about how difficult things feel. It may be connecting with other parents who share similar experiences, spending time with trusted friends, joining a support group, or working with a counsellor who understands the pressures that can come with caring for a child with additional needs.

Seeking connection is not a sign of weakness or failure. As human beings, we are wired for relationships, and feeling understood can help us cope with stress, build resilience and reduce feelings of isolation (Cohen and Wills, 1985). When so much of your energy is focused on meeting your child's needs, maintaining connections with others can be an important reminder that your needs matter too.

Looking for support?

I offer counselling for parents and carers of children and young people with additional support needs. Whether you are feeling exhausted by advocacy, worried about the future, struggling with anxiety, or simply need a space for yourself, counselling can help. To find out more about therapy for parents and carers, or to arrange an initial consultation, please get in touch.

References

Bonis, S. (2016) 'Stress and parents of children with autism: A review of literature', Issues in Mental Health Nursing, 37(3), pp. 153-163.

Cheng, A.W.Y. and Lai, C.Y.Y. (2023) 'Parental stress in families of children with special educational needs: A systematic review', Frontiers in Psychiatry, 14, 1198302.

Cohen, S. and Wills, T.A. (1985) 'Stress, social support, and the buffering hypothesis', Psychological Bulletin, 98(2), pp. 310-357.

Hayes, S.A. and Watson, S.L. (2013) 'The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder', Journal of Autism and Developmental Disorders, 43(3), pp. 629-642.

Hsiao, Y.J. (2018) 'Parental stress in families of children with disabilities', Intervention in School and Clinic, 53(4), pp. 201-205.

Purpura, G., Tagliabue, L., Petri, S., Cerroni, F., Mazzarini, A. and Nacinovich, R. (2021) 'Caregivers' burden of school-aged children with neurodevelopmental disorders: Implications for family-centred care', Brain Sciences, 11(7), 875.

Saxton, J., Burn, A.M., Zhang, X., Toulmin, H., Parker, J., Casey, H. et al. (2025) 'Barriers, enablers and outcomes reported by parents engaged with the special educational needs system in England: A qualitative study', PLOS One, 20(11), e0335606.