Keeping track while you wait for answers
When you are waiting for a referral, an assessment or a first specialist appointment: what is worth writing down, who to stay in touch with, and what you might be able to reach in the meantime.
Many families spend a long time in the middle. Something is different or hard for your child, someone agrees it is worth looking into, and then there is a wait: for a referral to come through, for a first appointment, for an assessment, for the letter that explains what the assessment found. Depending on the service and where you live, that wait may be months, sometimes longer.
It is a hard place to be. You are asked to describe your child to people without the words that would make it quicker, and you may be told that some support needs a letter you don’t have yet. Not having answers yet does not mean you have nothing to go on. You already know a great deal. This guide is about getting that down on paper, so it is ready when the appointment comes.
Find out where you stand
When a referral is made, ask who it is going to and how you will hear. A week or 2 later, it is reasonable to ring the service and check it arrived, ask whether your child is on the list, and ask roughly how long the wait might be. Write down the date, who you spoke to and what they said. A referral that went astray is far easier to sort out in week 2 than in month 6.
Keep your phone number and address up to date with the service, and ask how they will contact you. Some services send a text or letter partway through to check you still need the appointment, and a missed message can mean starting again.
Keep a simple log
Not a diary of everything; a few lines when something is worth noting. What happened, when and where, what came just before it, and what helped. Good days belong in it too, because they show what is working. Over a few months, a log shows patterns that are hard to see from inside a single week. It also gives the specialist something concrete to read when you finally sit down together.
Things families often note Sleep, eating, mood, how mornings and transitions go, what happened at school or early learning, anything new they started or stopped doing. Write what you saw rather than what you think it means; the people you see later can do the interpreting with you.
Gather what others have noticed
Teachers, early learning staff, a Well Child or Plunket nurse, grandparents and coaches each see your child in a different setting. KidsHealth suggests asking them to write down what they have noticed. A few lines in their own words, with a date, can add a great deal to what you bring. Keep them with the referral letter and any reports.
Go back if things change
If things get harder while you wait, it is reasonable to go back to your GP or to whoever made the referral. They may be able to let the service know things have changed, talk through what might help in the meantime, or point you to someone else. Being on a waiting list does not mean you have to wait quietly. Healthline, on 0800 611 116, is free and answers at any time of day or night. In an emergency, call 111.
Ask what you might be able to reach now
Some help does not depend on having a diagnosis first. Depending on your child’s age and where you live, it might include the Ministry of Education’s early intervention service for young children, the learning support people at your child’s school, a parenting programme, or a parent support group. What is available varies a great deal between regions and can change, so ask your GP, your Well Child nurse or the school what might be possible for your child now. If the names of things are new to you, there is a plain glossary.
Keep the paperwork together
Referral letters, appointment letters, reports, your log and the notes from other people, all in a single folder in date order. Appointments sometimes come at short notice, and it helps to be able to pick it up and go.
Waiting is tiring in a way that is hard to explain to anyone who hasn’t done it. Noticing and writing things down while you wait is real work, and it counts. When the appointment does come, you will walk in with months of careful notes, and that is a good thing to be able to hand anyone.
If you want to read further
This guide is our experience, with some help from the pages below. None of it is required reading; they are the ones we kept coming back to, mostly official pages, and they will always be more current than we are.
- Concerned about your child’s development? KidsHealth on who you can talk to when you are worried, and the services that may be available for young children.
- Healthcare appointments: tips for interacting with healthcare providers KidsHealth’s list for getting ready when the appointment does come.
- Early Intervention Specialist Service The Ministry of Education on support for young children, and how to ask about it.
Written and looked after by the Champ team. If something here is out of date, or you know a better way, hello@champ.kiwi.