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Ask anyone who’s looked after a young child: parenting is possibly one of the hardest jobs out there.
From anticipating their child’s needs to managing their emotions to looking out for anything that may be a danger to their child’s safety in the surrounding environment, there’s an uncountable number of things that parents need to constantly be aware of…
And this gets a little more tricky when parenting a child with special needs. There’s no denying that parents and caregivers of children with special needs may face more stress and challenges, because of the type of care or attention that their children may require.
While this is often unnoticed when everything is going fine, it’s in times of emergencies or distress (such as if the child wanders off and goes missing) that we see how much children with special needs and their families have to bear. With this, it highlights how as a community, we can come together, to provide better support for them – so that we can create a society that allows everyone to live their fullest lives.
Challenges that Caregivers Face
On top of the challenges that all parents face, caregivers and parents of children with special needs need to navigate their own unique issues.
Caregiver Stress and Emotional Toll
Parents and caregivers of neurodivergent children may experience a lot more stress than others, particularly because of the additional emotional energy and patience they need while caring for their loved one. There are a lot of complex emotions that may come into play: a parent may feel frustrated with their child for not listening to instructions; yet, also feel guilty for flaring up at their child because they may not be deliberately misbehaving.
Additionally, the 24/7 role of caregiving can be unforgiving – particularly if they don’t have anyone else to rely on. This relentless stress can sometimes lead to ‘caregiver burnout’, where the caregiver has exhausted their energy and ability to look after their ward.
Navigating the Educational and Healthcare System
The Singaporean education system is already complicated – and it can be even more complicated when it comes to navigating both education and healthcare for a child with special needs. It can be overwhelming to consider the various options, particularly with the stress of wanting to make the best option for one’s child.
After deciding on the school or treatment option, parents also need to juggle various appointments with specialists, clinics, and schools; and this adds another layer of complexity and stress into one’s already busy schedules.
Dealing with Stigma
And despite everything, no matter how much a parent has given to their child, they may always be judged for not doing more. There is still an underlying stigma against children with special needs in the community, especially if a child has an episode or acts out (as all children may occasionally do) in public.
Parents and caregivers also bear the huge emotional demands of addressing stigma towards their family; and any possible judgement that comes their way.
Support for Caregivers and Families
To build an equitable society that allows all to thrive, it’s essential that we, as a society, provide our support. From governmental structures for systemic help to community advocacy, these are a few ways we can help families with children with special needs.
Governmental Support and Systems
In Singapore, the Ministry of Social and Family Development (MSF) and the organisation SG Enable have initiatives to ensure early diagnosis of children with special needs; and directing them towards resources to support these children.
For example, there are Early Intervention centres which provide support for children under the age of seven with developmental needs; and which also offer workshops and training for caregivers to know how they can better look after their child.
As much as possible, children who may need a little more specialised support are identified early, such as during the developmental check-ins at the clinic for children. They are then directed towards care pathways that are appropriate for them; so that intervention can start early, to support the child’s growth. By integrating this in our healthcare systems, it takes a bit of stress off the parents and caregivers, as they are connected to the recommended professional support their child needs.
Advocacy and the Community
As a community, there’s also much we can do to support families with neurodivergent children.
Practising compassion and understanding already goes a long way, in terms of creating a welcoming environment for families. Combating stigma starts one person at a time; and every small action adds up to a more gracious and inclusive society. Reading up about neurodiversity and educating ourselves can help to increase our personal understanding of children with special needs; so that we, ourselves, know how to be supportive in an appropriate way.
Advocacy is also key in shaping public perception. Children with special needs may often be ‘invisible’ until a crisis occurs, and invisible gaps in the system are made starkly apparent. Community advocacy helps to increase awareness around the types of support that these children and their caregivers may need; so that as a community, we know how we should step into help, before anything untoward happens.
Professional Support
Lastly, making professional support easily accessible is one way to alleviate the stress on caregivers and parents. In addition to the government care pathways that were shared above, families may also think of opting for their own private care – whether it’s for their child or if they, themselves, want to speak to a professional to manage their caregiver burnout and stress.
At A Space Between, for example, we try to make it easy to reach out for care by providing client-matching services to connect you with a therapist that’s best able to help you with what you’re facing. Find the full directory of therapists working with us; and let us know how we can support you and your family.
References
- https://www.moe.gov.sg/-/media/files/special-education/parents-guide-children-special-educational-needs.pdf
- https://familiesforlife.sg/pages/FFLPArticle/Toddlers-Supporting-Resources-Special-Children
- https://www.msf.gov.sg/media-room/article/Measures-in-Place-to-Support-Parents-and-Caregivers-of-Children-with-Special-Needs
- https://kaleidoscope.com.sg/parents-and-community-in-special-needs-education-resources-collaboration-support-groups/
- https://acc.edu.sg/en/navigating-the-challenges-of-raising-children-with-special-needs-the-power-of-knowledge-and-understanding/
- https://www.nes.scot.nhs.uk/news/supporting-parents-of-neurodivergent-children-a-new-parenting-programme-pilot/
- https://bedslutonchildrenshealth.nhs.uk/neurodiversity-support/a-whole-person-approach/supporting-family-for-neurodivergent-children-and-young-people/
- https://pmc.ncbi.nlm.nih.gov/articles/PMC11496123/
- https://www.health.harvard.edu/blog/creating-communities-that-help-support-neurodiverse-children-202307172956
