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Understanding Your Child: A survey for parents and caregivers

Who this survey is for?


This survey is for parents and caregivers of children who learn, think or experience the world differently. For parents who notice their child is struggling at home or school and wish to understand them better. That includes children with a diagnosis, children going through or waiting for an assessment, and children whose parents simply feel something is a little different and have not had it looked at yet. You do not need a diagnosis, a referral, or the right words for it.


We are a New Zealand company building a tool to help families and teachers understand how their children learn, think and experience the world. The aim of this survey is to gather information to share with stakeholders, decision makers and to assist us in building this tool to better support families across New Zealand.


The survey takes approx 12 minutes. You can skip any questions and submit at any time. Your answers are anonymous unless you choose to give us your contact details at the end. We are not selling anything.

At the end of the survey you can register interest in joining our pilot.


Know My Child is an independent New Zealand company. This survey is ours, and it is not run or endorsed by any clinic or service you may be attending today.


Your privacy

We will never sell your information, and we will never share it with advertisers, marketers or data brokers.

We do not ask for your name, your child's name, or your school. If you give us contact details at the end, they are used only to contact you about what you asked for, and they are kept separate from your survey answers.


When we report what we find, to funders, research partners, government or investors, we report it as combined numbers and anonymous quotes. Nothing will identify you or your child.


We may also share combined findings with organisations working in this field. That means patterns across many families, never your individual answers.


You can ask us to delete your answers at any time by emailing [email protected]


By continuing you agree that we can use your anonymised answers in our research and product design, and report them in the combined form described above.
SECTION 1: About Your Child
If you care for more than one child, please answer about the ONE child you have most often worried about or sought help for. If that is more than one, choose the eldest of them.
1.
How old is your child
2.
Where do you live
3.
If outside of New Zealand, please specify
4.
What type of education does your child currently receive
Early Childhood Education
State school
State integrated school
Private school
Kura kaupapa Māori or Māori medium
Homeschool
Distance or online learning
Alternative education
Not currently attending school
Other (please specify)
5.
If other, please specify
6.
Which best describes your child's current situation
My child has received one or more diagnoses
My child is currently undergoing an assessment
My child is on a waitlist for an assessment
I suspect my child has one or more neurodevelopmental or learning differences, but we have not started the assessment process
I have concerns but I am not sure what they are
None of the above
7.

Which diagnoses has your child received if applicable? Choose as many as apply

[Checkboxes]
Learning differences
Dyslexia
Dyscalculia
Dysgraphia
Neurodevelopmental
ADHD
Autism
Dyspraxia or Developmental Coordination Disorder
Developmental Language Disorder
Fetal Alcohol Spectrum Disorder
Intellectual disability
Anxiety disorder
OCD
Tourette syndrome
Gifted or twice exceptional
Sensory processing difficulties
Something else (please specify)
Prefer not to say
8.
Please specify your child's diagnosis if not listed above
9.

What do you suspect, but have not had formally diagnosed? Choose as many as apply

[Checkboxes]
ADHD
Autism
Dyslexia
Dyscalculia
Dysgraphia
Dyspraxia or Developmental Coordination Disorder
Developmental Language Disorder
Sensory processing differences
Gifted or twice exceptional
I am not sure yet
Something else (please specify)
10.
Please specify what you suspect, if not listed above
11.

How confident are you that your instincts about your child are right?

Very confident
Fairly confident
Unsure
I really do not know what is happening
Not applicable
12.
How old was your child when you or someone else first felt something was different
Before they turned 1
1-2 years
3-4 years
5-6 years
7-8 years
9-10 years
11 or older
SECTION 2: The Journey So Far
13.
If you are waiting on an assessment, how long have you been waiting?
Less than 3 months
3 to 6 months
6 to 12 months
1 to 2 years
2 to 3 years
More than 3 years
Not applicable
14.
If you are currently seeking a formal assessment, who are you waiting to see? Choose as many as apply[Checkboxes]
Paediatrician
Clinical psychologist
Educational psychologist
Neuropsychologist
Child and adolescent psychiatrist
Speech language therapist
Occupational therapist
A public assessment service
A private assessment service
I do not know who we are waiting for
Other (please specify)
Not applicable
15.
Please specify who you are waiting for if not listed above
16.
Who first recognised there might be a difference
Me or my partner
A teacher
An early childhood educator
GP or family doctor
Paediatrician
Psychologist
Speech language therapist
Occupational therapist
A family member
My child
Someone else
17.
If it was "someone else" please specify
If you have received a diagnosis please continue. If you have not received a diagnosis skip to question 21.
18.

If you have received a diagnosis. How much did the diagnosis and any report help with each of these. Skip if not applicable

Not at all234A great dealNot applicable
Understanding why my child does what they do
Understanding why my child does what they do
Knowing what to actually do at home
Knowing what to actually do at home
Getting my child's school or teacher to change and provide support
Getting my child's school or teacher to change and provide support
Unlocking funding, a teacher aide or formal support
Unlocking funding, a teacher aide or formal support
Helping my child understand themselves
Helping my child understand themselves
Reducing stress and conflict at home
Reducing stress and conflict at home
19.
In the 6 months after diagnosis, what did you actually receive? Choose as many as apply. Skip if not applicable [Checkboxes]
Written strategies for home
Written strategies for my child's teacher
A follow up appointment
A referral on to someone else
A teacher aide or in class support
Funding of any kind
Nothing Further
Something else (please specify)
20.
Please specify if you received something else not listed above in the 6 months following diagnosis.
21.
What did you expect from the assessment that you did not get?
If you have not received a diagnosis please continue from here. If you have a diagnosis please skip to question 24
22.
What has stopped an assessment from happening? Select all that apply[Checkboxes]
The cost
The waitlist is too long
I do not know where to start or who to ask
The school said to wait and see
The GP or pediatrician said to wait and see
I could not get a referral
I am worried about my child being labelled
My child does not want it
I do not think a label will change anything
My partner or family do not agree it is needed
I do not have the time or energy for the process
It is in progress, it is just slow
Something else
23.
If there is something else that has stopped you getting an assessment, please specify
24.
If cost is a part of it, what were you told or what did you find out it would cost?
Add an approximate figure or "I don't know" is ok too
EVERYONE ANSWER FROM HERE
25.
How confident are you that you understand WHY your child finds the things they find hard?
Not Confident
Very Confident
26.
How confident are you that you know what to do to help?
Not confident
Very confident
27.
Suppose you could get a clear, plain language understanding of how your child learns, what they find hard and what helps, WITHOUT a diagnosis and without a waitlist. How useful would that be?
Very useful, that is most of what I actually want
Somewhat useful, but I would still want a diagnosis as well
Not sure
Not useful
Not useful for another reason (please specify)
28.
Please specify why this would not be useful
SECTION 3: What has it cost
29.
Over the last 12 months, roughly how much have you spent out of your own pocket on understanding or supporting your child's learning, behaviour or wellbeing? Include assessments, therapy, tutoring, specialists, programmes, apps, courses, and travel to appointments. (Select one)[Checkboxes]
Nothing
Under $250
$250 to $500
$500 to $1000
$1000 to $2,500
$2,500 to $5000
$5000 to $10,00
More than $10,000
Prefer not to say
30.
What have you paid out for out of your own pocket? (Select as many as applicable)[Checkboxes]
A private assessment
Tutoring
Therapy (occupational therapy, speech language, counselling, body talk etc
Apps, programmes or subscriptions
Courses, books or training for yourself
Travel, time off work, or accommodation to get to appointments
None of these
31.
Have any of the following happened because of what you have spent or done? Choose as many as apply[Checkboxes]
We went into debt or used a credit card we could not clear
We used savings set aside for something else
We went without or delayed something else important
One of us reduced our paid working ours
One of us left our paid work
We moved house or changed schools
We changed our plans for our other children
None of these
32.
Supporting your child can vary at different times throughout the year. Roughly how many hours does it take in each month below? Include appointments and travel, emails and phone calls, school meetings, paperwork, researching and advocating
Hours
In a busy month
In a quiet month
In a busy month
In a quiet month
33.
How many times have you had to explain your child from scratch to somebody new
Never
Once or twice
3 to 5 times
6 to 10 times
I have lost count
34.
How much do you agree with each of these statements regarding your child and their challenges?
Strongly disagree234Strongly agree
It puts strain on my relationship with my partner
It puts strain on my relationship with my partner
It affects my other children
It affects my other children
It affects my own mental health
It affects my own mental health
I feel like I am constantly fighting the system
I feel like I am constantly fighting the system
I have to highlight my child's deficits to be taken seriously or get support
I have to highlight my child's deficits to be taken seriously or get support
My child's teacher understands my child
My child's teacher understands my child
35.
How would you describe the wellbeing of your child and yourself right now?
Really struggling234Thriving
Your child's wellbeing
Your child's wellbeing
Your own wellbeing as a parent
Your own wellbeing as a parent
36.
How well supported do you feel
Not at all supported234Very well supported
By your child's school
By your child's school
By the health and specialist system
By the health and specialist system
SECTION 4: School, Support, and what you are hoping for
37.
Where have you felt most stuck, blocked or let down? Choose as many as apply.[Checkboxes]
Getting anyone to take my concern seriously in the first place
Getting a referral
The length of the wait
The cost
The assessment process itself
Understanding the report when it came
Getting the school or teacher to actually do something
Working out what to do at home
Keeping support going from one year to the next
Nobody looking at the whole child
My child getting older while nothing changes
Not being believed about what happens at home
The effect all of this has had on my child's confidence and well being
I have not felt stuck or let down
38.
And which ONE of these has been the worst? Select one
Getting anyone to take my concern seriously in the first place
Getting a referral
The length of the wait
The cost
The assessment process itself
Understanding the report when it came
Getting the school or teacher to actually do something
Working out what to do at home
Keeping support going from one year to the next
Nobody looking at the whole child
My child getting older while nothing changes
Not being believed about what happens at home
The effect all of this has had on my child's confidence and well being
I have not felt stuck or let down
39.
Thinking about your child at school right now, which of these is true? Choose as many as apply.[Checkboxes]
Nobody at school really knows my child
We start again from scratch with each new teacher
My child only gets adjustments when I push for them
The teacher wants to help but doesn't know how
Nothing happens without a diagnosis
My child is treated as a behaviour problem
My child's strengths are never mentioned
We hear about the problems but nobody asks me what works
My child is well supported at school
Not applicable
40.
What does your child find hardest about school? Choose as many as apply[Checkboxes]
Reading or writing
Maths
Concentrating or staying on task
Being bored or not challenged enough
Getting started, or finishing things
Getting to school in the morning
Anxiety or worry around school
Making or keeping friends
Fitting in, or feeling different from other children
Noise, busyness, uniforms or the sensory environment
Changes to routine, or moving between activities
Managing big feelings when they build up
Being understood by their teacher
My child's strengths and interests are not overly used in their learning
My child finds school mostly okay
Not applicable
41.
If you have had a diagnosis for your child and shared that with your school, how satisfied are you with the school meeting your child's specific needs?
Very Dissatisfied
Very Satisfied
*
42.
If your child is in mainstream schooling, do you feel their strengths and interests are recognised, celebrated, supported and developed further. Choose all that apply.[Checkboxes]
Recognised
Celebrated
Supported
Developed further
My child is not in mainstream
Not recognised, celebrated, supported or developed
43.
If one thing could change for your child in the next 12 months, what would you most hope for? Choose one
Greater confidence in themselves
Better support at school
Less anxiety
Better friendships
Better learning progress
Greater independence
Less stress in our family
Other people understanding them better
Something else
44.
If something else was selected, please specify?
About the proposed Know My Child service

Know My Child builds a picture of how your child learns, thinks and experiences the world.

First, understanding. Your child plays through a set of game like activities over a few short sessions at home or school. You answer a questionnaire, and so can their teacher. You can upload any reports you already have. From all of that, we build a profile of your child in plain language, strengths first, that tells you how they learn and experience the world and what makes things hard. No labels, only traits. It explains how it reached every statement. It is not a diagnosis, and it does not replace one.


Second, what to do. The profile comes with practical strategies for home and separate ones for the classroom, matched to your particular child rather than to a category. This support it is for the families and for the teachers at school.


Third, it keeps going. You and your child's teacher add what you notice as you go, so the picture grows with your child instead of going out of date. You own it, you decide who sees it, and you can share a short version with each new teacher, a reliever, a coach or a grandparent. A more in depth story can go to specialists when the time is right.


45.
How likely would you be to use something like this for your child
Definitely would not
Probably would not
Might or might not
Probably would
Definitely would
46.
What would worry you most about it? Choose as many as apply[Checkboxes]
The cost
It would be one more thing to find time for
Whether it is accurate
Whether the school would take any notice of it
Who else can see information about my child
How my child would feel about doing the activities
That a computer is making judgements about my child
I have been let down by things like this before
That it will tell me things I already know
Nothing really worries me
Something else (please specify)
47.
If you responded "Something else" please specify
48.
How much would you trust a picture of your child built this way?
Not at all
Very trusted
49.
What would make you trust it more? Choose all that apply max 3[Choose at most 3 items]
It explains how it reached the things it says
It was developed with psychologists and pediatricians
It has been tested in published research
I can correct anything I disagree with
My child's school already uses it
It is recognised by the Ministry of Education or Ministry of Health
My data stays mine and its never sold
A specialist reviews the profile before I see it
I can try it before I pay
SECTION 6: What matters most
50.
Before we mention any price, what would you expect something like this to cost as a one off amount?
Please type and approximate $ amount or type "no idea"
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