Parent to Parent

September eNews: 🏉 Handling Life's Curveballs! Ways to build your child’s self-esteem and other 🔮 future-focused actions you can take now! https://mailchi.mp/parent2parent/enews-september2021-1162576?e=[UNIQID]
Subscribe to the Parent to Parent eNews here: https://parenttoparent.us3.list-manage.com/subscribe?u=df85ede0ff51139d0a90ef587&id=c82dc6dec0

Wednesday 18th September is via Zoom. Click on the link to register.
MaryAnn

Our Brain, Body & Behaviour workshops are back!

Join our facilitators to explore the biology beneath the behaviour.

Developed for parents, educators and professionals that support Autistic people, these workshops teach a compassionate approach that supports understanding of emotions and the development of self-regulation skills in children.

📆 Thursday, 12 September
🕛 10am - 1pm
🗺 Eastbay REAP, 21 Pyne Street, Whakatane
👉 https://www.altogetherautism.org.nz/events/brain-body-behaviour-whakatane/

📆 Wednesday, 18 September
🕛 10am - 12 noon
🗺 Delivered via Zoom.
👉 https://www.altogetherautism.org.nz/events/kids-do-well-if-they-can-zoom-2

📆 Wednesday 25 September
🕛 9:30am - 11:30am
🗺 Alma Gardens - The Wharenui room, 46 Alma Road, Whanganui
👉 https://www.altogetherautism.org.nz/events/brain-body-behaviour-whanganui/

Hi there
Please see below and contact Jude if you would like to participate in the panel discussion.
Regards
MaryAnn

CMHC301 Applied Aspects of Human Health:



This University of Otago stage 3 course focuses on people’s health conditions and their interactions with the New Zealand health system. Students learn about legal and ethical healthcare foundations and frameworks and the key principles for healthcare workers and professionals. They study a range of physical and mental health conditions and learn about the roles of healthcare workers in the community and healthcare system of Aotearoa New Zealand.



It’s really great for them to hear from people who interact with the healthcare system regularly so this is an invitation to be part of a panel of parents of children who have disabilities. In the past some parents from Parent2Parent have attended and talked about their experiences and it has been so valuable for the students and it would be amazing if some people might be interested in doing this again this year. The tutorials are on Monday 9th of September at 3pm and Tuesday 10th September at 3pm. The tutorials go for about 50 minutes and don’t require any preparation – it would be great to just hear your experiences. Any travel, parking and childcare costs will be covered.



If you are interested, please contact the convenor of the course, Jude Sligo at [email protected] or call/text her at 021 722 303.

Send a message to learn more

Are you signed up to the Altogether Autism eNewsletter?

💜 Upcoming events and workshops
💜 Autism resources and information
💜 News from our team and the community

Sign up on this page: https://www.altogetherautism.org.nz/information-hub/

Coffee ☕ Support group this morning at The Valley Project. I look forward to seeing you there from 10.00 am.
MaryAnn

Hi there
I have a Mum who has a paid position for a Nanny/Au Pair based in Invercargill. The job description is below. If this is something that you are interested in or know someone that would be interested then get in touch with me and we can have a chat. I will then pass your details on to her.
MaryAnn
Hi there,
I am seeking a responsible, caring, and energetic person to join our family as a part-time nanny/carer. This role is perfect for a student who loves working with children and needs a job that fits around their class schedule and studies. Both of the boys are neurodivergent (Autism, ADHD) and a lot of fun . If you are knowledgeable in neurodivergent lived experience (maybe even neurodivergent yourself) or studying psychology, Occupational Therapy, Speech Language Therapy it's a bonus and the role could be a great opportunity for some real life exposure to help with your career path.
I am a single mum who works from home full time. I'm looking for someone who can meet the children once they arrive home from school, help settle them in with some fun activities and snacks. Driving to some after school clubs, activities may be required (car can be provided). I am relaxed on what you do as long as the children are safe and happy. Some dinner prep (for the children) may also be involved and much appreciated!
Mon-Fri: 2.30pm to 5.30pm flexible
**opportunity for additional hours evenings & weekends
**I can provide accommodation, so a live-in option can also be discussed
Responsibilities:
Providing attentive care for the children (7 and 10 year old boy)
Engaging in age-appropriate activities and play after school or driving them to extra-curricula activities/hobbies
Assisting with homework and educational activities
Preparing dinners and light meals/snacks for the children
You will be great for this role if you:
Genuinely enjoy being around children
Have a kind and positive attitude
Can manage your time and communicate effectively
Understand that all children are unique and develop at different rates
Willingness to learn and apply strategies to meet the children’s sensory needs (such as need for outdoor play)
Bonus points if you are first aid trained and have/are working towards a qualification in children’s development such as ECE, Early Intervention, Speech Language Therapy or Occupational Therapy (these are not a must-have).
Benefits:
Flexible hours that accommodate your class schedule
Valuable experience working with neurodivergent children
Supportive and friendly family environment
If you are passionate about working with children and looking for a job that offers flexibility, I would love to hear from you!
If you are shortlisted I would undertake background screening and background checks including references and police checks to ensure the suitability and safety for this childcare role.

Send a message to learn more

Hi there. I have a Mum looking to purchase a bike helmet for an 11 year old with an extra large head. Our local bike shops cannot help as they only go to a Size 64. Does anyone know if you can buy them online please preferably here in New Zealand. Thanks
MaryAnn

Send a message to learn more

Hi there
I hope to see you there.
MaryAnn
😀☕

Update: All Dunedin tickets are now gone but I still have tickets to the Wanaka show available if anyone wants them
MaryAnn

Hi there
I have tickets for The Great Kiwi Circus in Dunedin on Monday 19th August at Otago Boys High starting at 6.00 pm and for Wanaka on Wednesday 21st August at the Lake Wanaka Centre also starting at 6.00 pm. if you and your family would like to go please email me [email protected] with a postal address and the number of tickets required and I will send them to you..
MaryAnn
😀

Looking for training, PD, or just wanting a better understanding of autism?

Our workshops are developed with input and insights from Autistic people, whānau and professionals 🙌 so you know you're getting the right information to support Autistic people to live their lives.

Get in touch with us at [email protected] or check out or website for more information: [email protected]

Do you have a disabled or neurodivergent child at school or in Early Childhood Education? Learn to work alongside educators to ensure effective support for your child.
This event is a 2-part workshop via Zoom. Attendees are expected to attend both sessions.

This workshop will build your understanding of how to best advocate for your disabled or neurodivergent child using a rights and principles-based approach:

Explore your children’s rights in education
Build effective communication skills to advocate for your child
Create partnerships with schools and ECEs
Follow a strengths and interests-based approach to create effective IEPs
Workshop facilitator Frian Wadia has many years of experience advocating for her own disabled children’s rights in education. She is connected with a number of groups and initiatives championing inclusion and equity for all disabled children within the education system and their communities.

The workshop is free, thanks to funding from Care Matters.

Your family must be eligible for disability support services to attend this workshop. Please contact us if you are unsure of your eligibility.

Inclusion and Rights in Education - morning workshop via Zoom - Parent to Parent Do you have a disabled or neurodivergent child at school or in Early Childhood Education? Learn to work alongside educators to ensure effective support for your child.

Hi there. I would appreciate any suggestions of a venue to hold a Coffee./Support group. Ideally a venue that is warm with parking and kitchen facilities please. 😀
Thank you
MaryAnn

Send a message to learn more

Check out these free online workshops from the amazing Care Matters Team.
MaryAnn

Register here👇

https://carematters.org.nz/workshop-locations-registration-information-2/

Hi there
I have a Mum whose son has just started on a drug called Sertraline and she has asked if people would share their experiences, as this is all new to her. Please email me your comments. [email protected]. No names will be mentioned to the Mum.
Thank you
MaryAnn

Send a message to learn more

Hi there
I have another query please on behalf of a Mum who has a nearly 16 year old son with autism. He loves singing and dancing. Are there any groups in Dunedin that offer classes for neurodiverse young people?
Many thanks as always for your suggestions.
Kind regards
MaryAnn
🎤

Send a message to learn more

Hi there
Does anyone have any suggestions for a autism friendly hairdresser for a adult male please.
Thank you
MaryAnn

Send a message to learn more

Hi there
Below is some information from Jude Sligo who is a Senior Lecturer at Otago University. She is looking for some parents to participate in a panel that have children with health impairments. There is no cost to people that participate as childcare, parking and travel will be covered.
MaryAnn

CMHC301 Applied Aspects of Human Health:



This University of Otago stage 3 course focuses on people’s health conditions and their interactions with the New Zealand health system. Students learn about legal and ethical healthcare foundations and frameworks and the key principles for healthcare workers and professionals. They study a range of physical and mental health conditions and learn about the roles of healthcare workers in the community and healthcare system of Aotearoa New Zealand.



It’s really great for them to hear from people who interact with the healthcare system regularly so this is an invitation to be part of a panel of parents of children who have disabilities. In the past some parents from Parent2Parent have attended and talked about their experiences and it has been so valuable for the students and it would be amazing if some people might be interested in doing this again this year. The tutorials are on Monday 9th of September at 3pm and Tuesday 10th September at 3pm. The tutorials go for about 50 minutes and don’t require any preparation – it would be great to just hear your experiences. Any travel, parking and childcare costs will be covered.



If you are interested, please contact the convenor of the course, Jude Sligo at [email protected] or call/text her at 021 722 303.

Send a message to learn more

Tanea is running a workshop on 5th July for DCAFV - Dunedin Collaboration Against Family Violence
"Autism a Cultural Praxis"
If you are interested to register please email

[email protected]
🛗 please note the training is at 31 Stafford St lvl 2 - stair access only as our lift is out of order

Due to things out of my control there has been a change of date for the Cromwell Coffee/Support group. Tuesday 25th June, not Wednesday 26th June as previously advertised. Same venue. Cromwell Youth Trust 5.30 pm to 7.30 pm. I look forward to seeing you there.
MaryAnn

Hi there
Parent to Parent is holding a Coffee/Support group happening on Wednesday 26th June in Cromwell for any parent/carer who has a child or family member with a health impairment or disability. Coffee/tea and snacks will be provided. I look forward to seeing you there.
MaryAnn

Hi there
Organisers are making this event more inclusive, along with a sensory friendly hour. The introduction of their Sensory Friendly Hour is an opportunity for those who are susceptible to crowds, loud music, flashing lights, or have accessibility issues, to still be able to enjoy the Carnival. This will take place on Saturday 22 June from 5-6pm, though ticket holders will be welcome to stay past 6pm to catch performances if they wish. I will pop the link up once I receive the link to purchase tickets from the organisers.
Regards
MaryAnn

Mid Winter Carnival | An Iconic Annual Celebration in Dunedin Day(s) : Hour(s) : Minute(s) : Second(s) 3 Dunedin Midwinter Carnival The Dunedin Midwinter Carnival is thrilled to announce our 2024 theme: Creatures of the Deep! This June 21st and 22nd, we are inviting you to First Church to celebrate the wonderful world of water and the fascinating creatures tha...

(2/2) “For three years now, Cash has been attending Ko Taku Reo, the Deaf provision here in Wellington. He is in a small classroom of about six hard-of-hearing children.

“I instantly saw his progression at the new school through his determination to teach everyone NZSL at home. Before he went to Ko Taku Reo, he kept to himself a lot. His siblings would try to sign with him, and he would push them away. He didn't want any of it. I think being amongst children who were in the same situation as him and who shared the same language gave him that boost of confidence to use it everywhere.

“Outside of school, we have the support of the Wellington Deaf Club. They hold events almost every month. Whenever he comes home from school, his teacher has told him about some class or event. And he'll be, ‘Yep, the whole family has to go!’ So he’s got activities and a whole community outside the classroom, too. It’s also where we meet parents of Deaf children and Deaf adults. It's a great community of people here in Wellington. We're so grateful that we get to be a part of it.

“We really hope our story helps other parents, especially Pacific Island parents. We have so many new resources available to us, and I think it’s a cultural thing, not to ask questions and access these resources—a fear of the unknown. We can be too comfortable in our own culture to look into anything new. It’s like dementia; you don’t know what it is until you go out and research it.

“That was why I wanted to share our experiences with Parent to Parent: to show others that they are not alone and if they do get stuck, they can reach out—there’s a whole community out there—and there’s no right or wrong way of doing things; it’s what works for you as a family.

“My hope for the future is that they live life to the full. Because they have this ability (I don't like to call it a disability)—a talent for communicating in a different language—I don't want it to stop them from doing anything. YOLO! We are so fortunate that our kids have access to this wonderful language, to be able to be themselves and express themselves. That’s what’s important to us. If I could sum up what NZSL means to us in three words, it would be life, unity, love.” Ruby and Pen

Parent to Parent We believe in the value of families supporting families when experiencing the unique joy and challeng

(1/2) “I’m of Samoan heritage and was born and raised in Wellington, and my husband, Pen, was born and raised in Napier. We have six children and two dogs, and we also care for my mum full time, who has dementia.

“Cadence is our eldest daughter and has partial hearing. This is Cash, our second child, who has profound hearing loss but also has cochlear implants. NZSL has taken us to a great place we never expected to be a few years back—and we know other parents may be lost out there right now—so we thought we’d share our story.

“With Cadence, we found out about her hearing at the newborn screening tests. She failed them three times before they referred us to the Kenepuru ENT, where she got hearing aids. It was totally different with Cash—the way we found out and the solutions we came to—a whole new path of emotions.

“He had passed all those newborn screening tests fine. It wasn't until we noticed that he wasn't making any more noises when he laughed that we worried; there were no more giggles, and he wasn't speaking. We had Cadence to compare him to—she was babbling before 12 months and onwards, whereas he stopped at around 1 year old.

“Our GP referred us to a specialist. Because of Cadence, they thought it could be hearing loss and genetic. But after testing, they came to the conclusion that he had lost his hearing between nine and 12 months.

“I feel very emotional talking about it. For me, it became a self-blaming game with Cash, as he had had access to hearing at one stage. Then he lost it, and I was left with questions like, ‘What did I do wrong?’

“The professionals were very helpful. ENT directed us to where and who we needed to see, and the Adviser on deaf children, Rachel, came through this whole journey with us: getting hearing aids, having First Signs come to our home, coming with us to appointments, and through the Southern Cochlear Implant Programme.

“We were referred for implants because his ears weren't actually working, so there was no point in using hearing aids. He got his cochlears when he was 3-4 years old but has only used them consistently for about six months since.

“He didn't like it; it was too overwhelming. We knew he might react negatively because of the amount of time he'd had without hearing. Cash knows they're there, and sometimes I’ll show him them and say, ‘Do you want these on today?’ And he'll just say, ‘No.’ That’s where we’re at, at the moment.

“Pen didn't want him to get implants, but I did, even though we knew that he might not want to wear them. I was thinking of his future and him having the option either way. Because they can change their minds later, can’t they? That was the whole push for me.

“It was hard for us as parents to have those different viewpoints, and my husband had support from my parents as well. I guess being Pacific Islanders, our culture plays a big part in why they felt the way they did. My parents saw the risk of him having to undergo surgery to have the cochlears and had a lack of trust in that process.

“It was Rachel who initially advised us on using NZSL. She made a whole portfolio of first signs to stick around our house and would come over to sign with us as a family before introducing us to First Signs, through Deaf Aotearoa. They come into the home and really push your learning of NZSL. At first, it was hard to learn, but now Cash is our family’s fluent, determined and incredible teacher.” Ruby

“The best thing about NZSL is just communicating naturally and spontaneously with Cash—having regular convos with him. Since studying it at school, he's come along in leaps and bounds, leaving me behind. We know some, but he's really advanced. I'm trying to catch up!” Pen

Join Parent to Parent's National President Frian Wadia and the NEGL leadership group for this Facebook live EGL event from 5:00pm to 6:00pm tomorrow! Please share with friends and families who may be interested.

Live Date: May 2nd

In this latest update, Whaikaha reinstates some flexibility to purchase certain self-regulation items and the existing support for courses of study/therapy/programmes committed to before March 2018 (where the disabled person relied on the flexibility under the previous Purchase Rules to support their participation in those commitments). Read more here:

Clarifications on Purchasing Rules for Flexible Funding | Whaikaha - Ministry of Disabled People Whaikaha – Ministry of Disabled People is providing clarifications to support disabled people, tāngata whaikaha Māori and whānau to apply the Purchasing Rules for flexible funding supports. 

Many thanks to our fantastic funders Spectrum Foundation for supporting our workshops 💙🧡💛

This is Frian.

Her three boys know her as ‘mum’.

But to many Kiwi parents with disabled children, she’s a superhero.

Frian runs Parent to Parent's free ‘Building a Good Life’ workshops, with help from Spectrum Foundation funding. The workshops help parents get to know their child’s rights in education spaces. That means helping them understand what funding is available, how to help build an Individual Education Plan (IEP) for their child, and how to ensure their child has access to the support they need.

Frian’s experience is hard-earned. She has learned how to navigate the system with each of her sons. When she shares that experience, it can be life-changing for children and their whānau.

“I learned so much from her. I finally felt like I knew what my son was entitled to, and how to go about accessing that support,” says mum Nirishma.

Frian hopes all whānau members attending the workshop have a similar experience to Nirishma.

“After the workshops, I hear many parents tell me how much more confident they are at navigating their child’s situation. They have information and understanding they didn’t have before”, she says.

Nirishma’s son Ayaan has just started intermediate school. While Nirishma still finds it challenging to navigate the system, her understanding means she can be the most effective advocate possible for her son.

Spectrum Foundation is a proud funder of Parent to Parent’s ‘Building a Good Life’ workshops, supporting disabled children and their whānau to have equal access to a good education.

To learn more about the workshops, visit www.parent2parent.org.nz.

Yesterday Whaikaha – Ministry of Disabled People announced changes to the Purchasing Guidelines and Equipment and Modification Services (EMS). The changes to the Purchasing Rules impact how disabled people, and their families can use flexible funding options - Carer Support, Individualised Funding, Enhanced Individualised Funding, Choice in Community Living and EGL Personal Budgets.
You can find the detail of the new guidelines here: https://tinyurl.com/5nkvzxsb

These changes have come as a shock to our community, and we understand the concern and distress that many people are feeling right now. Parent to Parent is working with other groups and organisations in the sector to continue to advocate for all of those affected by these changes.

If you would like to share your concerns, we invite you to share your feedback via the following channels:

Carers NZ survey: https://tinyurl.com/yydyy65t

Carers Alliance Parliamentary petition: https://tinyurl.com/5ea7wjyz

Awhi Ngā Mātua feedback form: https://tinyurl.com/4vtms8mf

We are still gathering information as to how these changes will affect disabled people and their families and will ensure to keep you updated with any further changes/information as and when we are aware of them.

Together we are stronger!

Update: Thank you everyone for your feedback. We are sorry that we were not able to give the community more notice of these changes. We are carefully considering the comments and feedback provided in this chat. We will respond to questions as quickly as possible, and also work to provide additional information to our community on what these changes mean for you.

Changes to Purchasing Rules and Equipment and Modification Services.

Purchasing Rules:
We have made changes to the Purchasing Rules to clarify how people can use their disability support funding. Purchasing Rules describe what disability support funding can be used to buy, when using Individualised Funding, Enhanced Individualised Funding, Choice in Community Living, Personal Budgets or Carer Support.

These changes do not affect the amount of funding you are allocated.

Equipment and Modification Services (EMS):
Whaikaha is working with equipment and modification assessors and providers to put in place prioritisation measures. This means that people with the most urgent need will be prioritised for Equipment or Modification Services.

Why are these changes happening?
Whaikaha commissions disability support services for almost 50,000 people and funds equipment and home and vehicle modifications for approximately 100,000 people through Equipment and Modification Services (EMS). There is increasing pressure across the disability support system in both the demand for, and cost of these services and supports.

You can find out information about the changes on our website: https://bit.ly/3TjFdIl

Image description: purple background with pale yellow text that says, "Changes to Purchasing Rules and EMS”. The top left corner has a faded tohu design, a series of parallel lines with intersecting curved elements.

On , we’d like to recognise the unique challenges and joys of growing up with a disabled or neurodivergent sibling, and spread the word about our SibSupportNZ programme, which brings these children together. And who better to tell you about it than one of our attendees?

“I am nine years old, and I have a sister who is 11 years old, nearly two years older than me. The most interesting thing about me is that I like to dance; I do tap and contemporary. I am best at dancing and sport. I play hockey—I can score goals and defend, too. I used to play netball—all of the positions.

“My sister is best at writing. She has a talent for reading and writing, but I’m not sure what kind of things she likes to write. She reads Jacqueline Wilson and the Baby-Sitter’s Club series. I like Harry Potter, my favourite is The Deathly Hallows, the movie too. My sister loves Dua Lipa, it’s probably the most and least interesting about her because she can go on about Dua Lipa a bit much. She knows all the lyrics to her songs; I don’t know how she got so into her.

“The best thing my sister has ever done for me is teach me to read. That’s pretty special. I’m not sure how she did it as she isn’t very patient. She sometimes makes me laugh too, like when she spilled her food that she was eating on the ground, that made me laugh! I don’t think I’ve taught my sister anything, but I help her find things, like her hairbrush and her cardigan. I also help her up the steps outside our house. When my sister’s not around, I feel happy because I don’t have to worry about her. I’ve never been apart from her for a long time, so I’ve never really had the chance to miss her.

“I had a great day last Saturday at the SibShop. I enjoyed the laser tag most because I like sports. I only got 19 people, some people got a hundred and they weren’t even older than me. At the end of the day, I felt sad because I wanted to keep going—I was having such a good time—I didn’t want it to stop. I’d definitely go again. Other activities I’d like to do are ice skating or rock climbing. I’m not a great ice skater, but it would be good to learn.” Lucy

Our by-siblings-for-siblings support groups (ages 8-18) are judgment-free spaces to make friends with others in a similar situation, offload stress, and be a carefree kid.

Run by trained SibLeaders who themselves have a disabled or neurodivergent sibling, our weekend SibCamps and one-day SibShops are packed with games and activities, plus the chance for some serious chat. And did we mention, parents get some time off too?

Please join us in celebrating our amazing siblings and share this service with other parents who may have a child who could benefit, or sign up for our newsletter to hear about events happening in your area.

https://parent2parent.org.nz/how-we-help/sibsupport-nz/



Photo taken after last Saturday’s SibShop in

“One year on and it’s raw. It’s still raw here. Some places were untouched, some were battered, and other places were just annihilated. Eskdale is just gone, completely gone. We live five minutes away from Pakowhai; there’s a large river there, which turned into a raging torrent. It washed the whole community away.

“Hawke’s Bay wasn’t really on the radar to start off with. They said we were going to get the side of the cyclone and we’d get heavy rain. We do get some flooding here normally, so everyone was expecting the usual: parts of Napier to flood, and then by the next day, it’s gone through runoff, and everyone’s back to normal within a few days. They said it was going to come across the North Island and head up the coast to Gisborne. So Gisborne and Wairoa were on watch, but we weren’t, and there was not enough warning at all.

“I first realised it could be a lot worse than anyone was expecting on the Monday night, February 12th. I was staying with my daughter in the children’s ward of the hospital, and my partner and youngest son had come to visit. Afterwards, I walked them out the front; it was raining and very windy. My son popped his umbrella up, and a gust of wind picked him up—caught the umbrella like Mary Poppins—he tells people he had a Mary Poppins experience. He was thrown back about a metre in the air. My partner ran; there was a man on crutches who also ran (he had just had surgery on his leg but was very quick on those crutches!). My partner caught him mid-flight. If he hadn’t caught him, he would have been slammed into the side of the hospital building. It was scary. That’s when I thought, wow, I’ve never seen wind like that. This is going to be bad.

“During the night, I knew it was serious because the helicopters started coming. Maybe every 10 minutes I heard a helicopter flying in. They’d be there a few minutes and fly back out, then the next would fly in. In the middle of the night, there was a little tap on the door. It was a nurse who asked if I could help out, as she knew I supported the disabled community in my role at Parent to Parent. I was already awake—freaked out by the helicopters—so I got up, and the end of the hospital was flooded. I started to help mop up the water and put towels down. Then I prepared towels and pyjamas ready for people coming in…” Jill Fallowfield, Parent to Parent Regional Coordinator for Hawke’s Bay

Read more of Jill’s on-the-ground account of when Cyclone Gabrielle hit and the grassroots community response here: https://parent2parent.org.nz/news/cyclone-gabrielle-one-year-on/

Parent to Parent We believe in the value of families supporting families when experiencing the unique joy and challeng