Information and resources for parents and caregivers of children with Down syndrome in New Zealand
Become an UpsideDowns Member
If you have a little one with Down syndrome, first of all, congratulations!
Secondly, we'd love to hear from you. You can apply to become a member of UpsideDowns by emailing firstname.lastname@example.org or email@example.com and asking us for an application form.
Once you are accepted as a member, UpsideDowns will subsidise the costs of your child's speech language therapy with any NZSTA-registered therapist in New Zealand from birth to age 18. You can choose from one of two subsidy options.
Option 1: 50% of therapy costs to an annual cap of $1,000
Option 2: 80% of therapy costs to an annual cap of $2,000
Unfortunately, due to funding constraints, we have to operate a waitlist, but we're working hard every day to clear this waitlist as often as we can. Applicants become members on a first come, first served basis, so it's a good idea to send in your form as soon as you've decided to get speech language therapy for your child.
Down Syndrome Facts
Down syndrome was first described in detail by an English doctor, John Langdon Down, in 1866. Down syndrome is the most common chromosomal variation in newborn babies. It results from extra genetic material from chromosome 21. In around 95% of cases there is an extra copy of chromosome 21 (Trisomy 21) and in about 4% there are 46 chromosomes as usual, but there is a translocation between chromosome 21q and another chromosome (usually chromosome 14 or 22).
Down syndrome is not caused by anything done before or during pregnancy and can occur in any family. The syndrome is recognisable at birth due to typical physical characteristics. Diagnosis is confirmed by chromosome analysis.
Just over half of children with Down syndrome are born with a heart or bowel issue. An operation may be needed immediately or when the baby is older.
People with Down syndrome do have features in common, but they also closely resemble their parents and family. Many characteristics are attributed to Down syndrome, but any one person will only have some of them. Each person is an individual, with a unique appearance, personality and set of abilities. The extent to which a child shows the physical characteristics of the syndrome is no indication of their intellectual capacity.
Documentaries of raising children with Down Syndrome:
Watch: Raising kids with Down Syndrome
Watch: Growing up with Down Syndrome
Watch: Childhood up with Down Syndrome
Watch: Adulthood with Down Syndrome
Speech language therapy for kids with Down syndrome: what the experts say
"Pupils who have Down syndrome face complicated challenges in mastering and using speech language and communication skills. With the right opportunities and support, [children with Down syndrome] can develop communication skills that help them to make relationships and socialise, communicate wishes, needs and aspirations, and use sign language effectively as a tool in all sorts of situations. It's vital that pupils who have Down syndrome, and school staff who support them, have access to specialist input from speech and language therapy services throughout their school careers." - Leela Baksi, Langdon Down Centre UK, 2006.
"optimal communication skills development in children with Down's syndrome require that they receive early and continuing instruction"- Miller, Leddy, and Leavitt, University of Wisconsin-Madison, 1999.
"Since speech and language skills are central to the development of mental abilities such as thinking, reasoning, and remembering as well as to social inclusion, it is essential that speech and language is a focus for parents, teachers, and therapists from infancy through to adult life." - Sue Buckley, University of Portsmouth, 2000.
"children with Down's syndrome should be seen at least monthly in school, targets reviewed and activities set for parents, teachers, and assistants to include in their daily routines... Some children with Down's syndrome of school age may need weekly or individual group sessions of speech and language therapy with a therapist who has the specialist knowledge and skills to address their profile of difficulties, particularly for speech and intelligibility work." - Buckely and Le Provost, University of Portsmouth, 2002.
"Speech and language are complex, and present many challenges to the child with Down's syndrome that need to be addressed through a comprehensive approach to speech and language treatment... an individually designed program that meets all of the communication needs for a specific child." - Libby Kumin, Loyola College, 1998.
Early intervention: Speech language therapy
Early intervention is professional assistance given to parents, carers and their young children. Different therapists have different specialist areas. Together they cover all aspects of our children’s development. Often therapists offer assessment and advice, and suggest home programmes for parents or caregivers to carry out with the child.
Babies with Down syndrome often see
• Visiting Neuro-developmental Therapist (VNT). This is a registered Physiotherapist or Occupational Therapist. They focus on infants and toddlers performance of everyday self care, gross motor, fine motor and play activities with an aim to enhance their development and independence.
• speech-language therapist (SLT)
• early intervention teacher
The team may also include paediatricians, health-care nurses, support services, dieticians, play therapists, physiotherapists, occupational therapists, psychologists, social workers and music therapists.
What do Visiting neuro-developmental therapists do?
• work with muscles and movement, children’s growth, development, and everyday living.
• teach parents and carers skills and exercises to assist learning and development.
What do speech-language therapists do?
• assist with any feeding problems.
• help with early communication through play.
• can teach us about the use of signing as our children find it easier to learn to talk if main words are signed.
What do early intervention teachers do ?
• provide advice about building onto children’s strengths to ensure they reach their potential as they learn and develop.
• support parents and family in the home and early childhood centre.
• support teachers to fully include our children into the early childhood or school setting.