If you are raising a child with special needs, there is so much you are asked to hold at once: the emotional, medical, schooling and practical day-to-day side, and somewhere in the middle, the financial side too.

I know this both as Jade’s mom and as a financial planner. If I could sit across from another parent over a cup of coffee, I would not try to give them a perfect roadmap. There is no perfect roadmap. I would open up a few conversations that may help them feel more prepared, more supported, and able to make thoughtful choices over time.

None of us can know exactly what our child’s life will look like 20, 30 or 50 years from now. But we can put enough structure around the family so that, whatever comes next, there are options.

Start with what your child may need over time

Every child is different. A diagnosis does not tell you exactly who your child will become, what they will enjoy, what support they will need, or how independent they may be. That uncertainty can feel overwhelming, but it also means we should plan with flexibility.

In the early years, much of the financial pressure may come from things you never expected: paediatricians, specialists, assessments, therapies, medical appointments, second opinions, and the time it takes to get to all of them. Speech therapy, occupational therapy, physiotherapy and early development support can make a meaningful difference, but they also require money, time and emotional energy.

I would encourage parents to find professionals who see your child as a person first. Choose doctors, therapists, schools and advisers who listen carefully, understand your family, and are willing to walk the road with you. If something does not feel right, ask more questions, get another opinion, or move on.

Schooling is another important part of the conversation. Sometimes the best environment is not the one you first imagined. A school that offers therapy as part of its programme, understands your child’s needs, and allows them to feel safe and supported can change the rhythm of family life. It can also reduce the pressure on parents who are trying to manage work, home, appointments and everything in between.

Planning does not mean trying to predict every cost perfectly. It simply means asking: what support might be needed now, what might change later, and what can we put in place so that we are not making every decision only when we are already under pressure?

Planning gives you choices

One of the hardest questions for any parent is: What happens to my child when I am no longer here?

This is where proper financial planning, estate planning and legal advice can make a real difference.

For many families, this may include reviewing your will, thinking about guardianship, preparing a letter of wishes, and exploring whether a trust may be appropriate. This does not have to become a technical exercise at the kitchen table. The point is to understand what each structure can help achieve, who would be involved, and how money could be managed to protect your child’s long-term well-being.

A letter of wishes can be especially helpful because it allows you to share the softer details that do not always belong in a legal document: what your child loves, what unsettles them, who understands them, what routines matter, and what you would want future decision-makers to know.

If there are siblings, fairness may not always mean leaving everything equally. One child may need more financial support, while another may need the freedom not to become the default solution for every future problem.

Think about life cover and investing earlier

For many families, life cover becomes less important over time as children become financially independent and parents accumulate sufficient assets. When you have a child who may need lifelong support, the picture can look different.

It may be worth asking whether part of your life cover should be specifically earmarked for your child’s future needs, possibly through an appropriate trust or estate planning structure.

Long-term investing is another area where small decisions made early can become powerful over time. Even if the amount feels modest, setting it aside consistently can help build a future pot of money that gives your family more flexibility later.

Understand the tax and medical benefits available

One of the things I wish I had thought about sooner was using any tax refunds or savings linked to disability-related expenses more intentionally.

In South Africa, SARS may allow certain qualifying medical and disability-related expenses to be claimed through the additional medical expenses tax credit, provided the relevant disability requirements are met.

SARS explains that, for tax purposes, a disability involves a moderate-to-severe limitation on daily functioning that has lasted or is expected to last more than a year, and must be diagnosed by a suitably registered medical practitioner.

The ITR-DD form is used to confirm a qualifying disability and must be completed by the taxpayer or guardian and the relevant medical practitioner, and then kept as supporting evidence in case SARS requests it.

This is not something I would suggest navigating alone if you are unsure. Speak to your tax practitioner or financial planner so that you understand what may qualify, what evidence you need, and how to keep proper records.

Parents should also properly understand their medical scheme benefits. A good medical aid can make a significant difference when there are regular medical appointments, therapies, medication, assessments, or ongoing care needs. Ask questions, read the benefit details, and check whether any relevant treatment or care may fall under chronic benefits or prescribed minimum benefits where applicable.

Remember that you have a future too

This can be difficult to say out loud, but it matters: your child has special needs, and you still have a life too. Your retirement, marriage, work, friendships, health and other children all belong in the plan.

It is easy to become so focused on giving your child every possible opportunity that you forget to protect your own future. Looking after yourself is part of creating a sustainable plan for the whole family.

A final thought

If I could go back, I would not try to work out exactly what Jade’s life would look like decades from now. I still could not tell you that today.

What I would do is start some of these conversations earlier. I would ask more questions. I would trust my gut sooner when a professional, school or environment did not feel right. I would invest earlier, plan more intentionally, and make sure the right people were around the table.

For me, financial planning has become less about predicting the future and more about creating choices. Choices for Jade. Choices for Kerry. Choices for Gareth and me. We cannot know exactly what life will bring, but we can put enough in place so that, whatever comes next, our family has options, dignity and support.