When your child gets a diagnosis: the first steps
Who is who, what support to ask about, and why you should start documenting everyday life now – a guide for parents who have just been given a diagnosis.
In short
- You do not have to do everything at once. The first weeks are about understanding the diagnosis and finding out who can help.
- Support usually comes from three places: the health system, the school, and public or insurance schemes for families. Which ones exist depends on where you live.
- Find other parents. A parent or patient organization for the diagnosis is often where the best practical advice is.
- Start documenting everyday life now. It is what you will need when you apply for support, and if you have to appeal.
A diagnosis can come as a shock, or as a relief after a long time of not knowing. Either way it brings a lot of new words, systems and people. This guide gives an overview of the first steps, so you know which doors to knock on and what can wait.
The first weeks
- Give yourselves time. It is normal to need to catch your breath before you can deal with applications.
- Ask the doctors: What does the diagnosis mean for everyday life? What should we watch for? Who can we call?
- Find your organization. Most diagnoses have a parent or patient organization with advice, networks and parent groups.
- Take one thing at a time. Start with what takes up the most room in everyday life right now.
Who is who?
| Who | What they help with |
|---|---|
| Hospital and specialists | Diagnosis, treatment and check-ups |
| Pediatrician or family doctor | Day-to-day contact, referrals and medical letters |
| Therapists | Physical, occupational and speech therapy, and written descriptions of what your child needs |
| Daycare and school | Support in everyday life, and an important source of descriptions of how your child manages |
| Public services or insurer | Financial support, equipment, respite and help at home, depending on the country |
| Parent and patient organizations | Advice, networks and knowledge from other parents |
Support you can ask about
The schemes have different names in every country, but the kinds of support are much the same. Ask about each of them:
- Support in daycare and school. In the US, children under three can get early intervention services, and school-age children can have an IEP or a 504 plan. You can ask the school in writing for an evaluation. In Europe, ask the school who assesses special educational needs.
- Money for the extra costs that follow from the disability, and compensation when a parent has to cut back at work. Many European countries have a care or disability allowance. In the US, ask about Medicaid, including your state's waiver programs, and Supplemental Security Income.
- Equipment and changes to the home, such as a wheelchair, a special bed or a ramp.
- Respite, so the family can have a break.
- Leave from work. Read our guide to combining a job with caregiving.
Not sure where to start? In the US, every state has a Parent Training and Information Center that helps families for free; find yours at parentcenterhub.org. In Europe, the national organization for your child's diagnosis usually knows the system best.
Document from day one
Whoever decides on support can only assess what is in the file. What most often makes the difference is concrete descriptions of everyday life:
- A diary of nights, seizures, episodes, and how long care and therapy take.
- Receipts for extra costs, and a mileage log if you drive a lot.
- Statements from doctors, therapists, daycare and school. Ask them to describe what the diagnosis means in practice.
- Every decision and letter you receive, kept in one place.
It may feel like a lot right now. But it is far easier to write things down while they happen than to remember them a year later, for example if you have to appeal a decision.
Tip: Bring someone to meetings
Bring a friend, a family member or an adviser from your organization to meetings with the school or the authorities. It is a great help to have someone taking notes while you listen.
The whole family
- Siblings need attention too, and need to have what is happening explained in words they understand. Many organizations have something for siblings.
- Your relationship often comes under pressure. Talk about how you share the tasks, and remember to give each other breaks.
- Your friends and family often want to help but do not know how. Give them concrete tasks.
How LumaCare can help
With LumaCare everyday life is documented while it happens, and you have it all ready when you need it.
- Record nights, episodes and care with date and time.
- Keep receipts, decisions and statements in a shared document archive.
- Make a report of what you have recorded to bring to the doctor.
- Invite grandparents, respite carers and helpers, so everyone knows what your child needs.
This guide is general information, not legal or medical advice. Support schemes differ between countries and states, and each case is assessed individually. Your parent or patient organization can tell you what applies where you live.