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Word of Mouth April 2019 - Cleft New Zealand Inc Newsletter

Welcome to the first newsletter of 2019.

Chairperson's Report

2019 has been a busy year so far. We have been working hard to re-engage with our membership and improve what we can offer in terms of support services and other practical help for everyone affected by Cleft Lip and Palate in New Zealand.

Work continues to progress on an updated version of the Blue Book (update below), which is intended to be available in both the traditional paperback form as well as a mobile friendly e-book to make it as accessible as possible in addition to making it easier to keep current with any changes that may occur over your child's cleft journey. We are hoping to have the new version of the Blue Book available mid 2019. If you would like to share some of your stories to be included in the Blue book please contact info@cleft.org.nz.

We are hoping to get coffee groups around the county kick started as soon as possible, but we need your help to do this. We really need coffee group coordinators to run coffee groups in different parts of the country, it really isn't much work at all and it is hugely rewarding. If you want to get involved please email info@cleft.org.nz. These coffee groups are a great way to get in touch with others facing the same issues / appointments as you and to support each other through some of the challenging times that we all face. If you haven't been to a coffee group yet, I strongly encourage you to go along to one and meet some of the other parents/kids as I have always found it to be really inspiring as to how amazing all our kids are. Last year, we held our first "virtual" coffee group to enable those in smaller communities to connect with other parents and we plan to hold another one of those soon.

The AGM is also coming up on 1 May at the Parenting Place in Greenlane, Auckland. We really want to hear from all of you about where you want to see Cleft New Zealand heading as an organisation and what our priorities should be. This is YOUR organisation and so without your input we simply have to guess what we can do to help.

Finally, even if you can't make coffee groups or the AGM we would still love to hear from you to understand what we could do to help support you/your child through the cleft journey so please contact us via facebook or on email if you have any ideas that you think we should look into.

Christmas Parties

Christmas Parties were held in Auckland, Tauranga and Christchurch. A big thank you to those who organised them.

Tornado Tammy entertains a captive audience at the Auckland Christmas Party
"How does my bubble look?"

Blue Book Update

Our work on the update of the Blue Book is ongoing. We are currently working on the text and images to ensure it is accessible and practically useful for families and professionals alike.

For those who completed our Facebook survey, we are currently considering consolidating and publishing the book in hard copy and through our Cleft NZ website as the new website will function as an App on most phones.

If anyone has any further input they would like to share prior to the book going to print you still have time to let us know, please contact us through info@cleft.org.nz.

Speech Matters by Akshat Shah

A difficulty with clear speech is a common issue in children with a soft palate disorder, though this is not true for all children born with a cleft. Consider a cleft or poor soft palate function as a ‘hardware fault’. The Plastic Surgeon and Orthodontist work together to repair the hardware side, and the speech-language therapist’s (SLT) role is to look at the ‘software’ side. That is, the hardware in the mouth consists of your hard and soft palate, tongue and teeth – all the bits you need to produce sounds accurately. The software side makes sure you know how to use these hardware tools. These faults can occur at birth (through a cleft) or show themselves over time (soft palate dysfunction). The SLT you may work with might be from the hospital (Child Development Team), kindergarten/school (Ministry of Education), privately, or directly with the Specialist SLTs on your regional Cleft Lip and Palate Team.

It’s important to know the difference between speech and language as they are two very different aspects of our communication. Speech refers to the combination of oral sounds we make to build words. These sounds vary between languages (for example, there are 19 vowel sounds in Norwegian while only five in te reo Maaori) and dialects (14-16 vowel sounds in American English and 20-21 in Australian English). Language refers to the use of these words and sentences to communicate our thoughts, needs, and ideas. This can include talking about and asking for things, and how we use language in social situations.

We know that infants born with a palate disorder (due to a cleft of otherwise) can have a delay in the development of their speech sounds compared to their peers. Therefore, it is important to engage with SLT support from the beginning and follow the guidance of the Cleft Specialist SLT. Key red flags which suggest a ‘hardware fault’ include

  • Persistent use of “m” and “n” sounds and words (e.g. lots of mum, mummy, nana, no, nanny”
  • Using the sounds of “uh oh” instead of the correct sounds (e.g. “ah-ee” instead of “daddy” for English-speakers is incorrect, while this ‘throaty sound’ is common in Tongan names so is not a concern in that language)
  • An overall ‘nasal tone’ (where they sound as if they are “speaking through the nose” and is different to being ‘blocked up’ from a cold)
  • A nasal snort-like sound during speech
  • Any hearing difficulty. Signs of hearing loss may be not responding to their name, sitting too close to the TV or speakers, missing words in an instruction, distractible behaviours.

In the meantime, general advice includes:

  • Focusing on clear production of the sounds rather than saying them forcefully. Accurate production is often more important for a listener to understand you than volume or tone
  • Parent and SLT modelling these sounds gently. Strong sounds don’t always mean clear sounds. Gently making the sound focussing on the lips and tongue making sure they get to the ‘right spot’ in the mouth to make the sound.
  • Using the sound being practiced in the middle and ends of words (e.g. “up-up”). This needs the soft palate to do less ‘work’ than if the sound was at the beginning of the word

If you do notice any of the signs mentioned above, contact your local Cleft Team for an assessment or review. For specific advice related to your child and their speech difficulty, speak with the SLTs who are supporting you in the community. It’s important to work together with the Cleft Specialist SLTs and your community-based SLT.

Akshat Shah,

Speech Language Therapist MNZSTA, BSLT, MSc (Speech Science).

Akshat is an experienced Speech-Language Therapist based in Northland. He has previously been part of a regional Cleft Lip and Palate Team. He works privately with clients in Auckland and Whangarei, and can be contacted on akshat@outlook.co.nz for an appointment.

Have a speech related question for Akshat? Please email it to info@cleft.org.nz and Akshat will do his best to answer it in the next newsletter (space and time permitting).

Outcomes Study

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