eVISION NEWSLETTER
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We l co m e t o e V i s i o n Newsletter #103 Pa r e n t s of Vi s i o n I m p a i r e d N ew Ze ala nd Inc S up p o r te d by t h e B l i n d F o un d a ti on
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CONTENTS
3 PVINZ BOARD MEMBER PROFILE
4 E D I TO R S P E A K W E LC O M E E V I S I O N 103
6
F A C E —T O — F A C E W O R K S H O P S PA R E N T 2 PA R E N T N E W Z E A LA N D
8
PVINZ ANNUAL GENERAL M E E T I N G C H A I R R E P O RT 2017
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I A M 'T H AT' PA R E N T
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A PA R E N T'S R E F L E CT I O N
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G O I N G TO T H E AT R E W I T H YO U R C H I L D: A S U RV I VA L G U I D E F O R PA R E N T S
19
P V I N Z M E M B E R S H I P A P P L I CAT I O N F O R M
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CO N TACT U S 2 — P V I N Z #103
PVINZ RE-CAP Good morning and welcome to Parents of Vision Impaired NZ, or PVI as we are commonly known! Our recent membership drive with the help of the Blind Foundation and BLENNZ has been to connect with as many parents and families as possible, and we are encouraged by the response. We do have a strong network of families, and our plans for the coming 12 months include a number of parent meetings around New Zealand so that parents and families can connect with others and share experiences and stories. Our theme for these meetings will be about transition through the various stages of our journey with our kids and planning and coping with the various challenges from the age birth and beyond. We have a very active private Facebook page which is just parents talking, and sharing thoughts, experiences and ideas. If you would like to join in, please contact: 1. Justine Edwards: justine@pvi.org.nz 2. Dionne Scott: dionnesg@gmail.co.nz Also, we have an active website www.pvi.org.nz and an additional Facebook attached to that. From the website you will be able to download a Ministry of Education/ Health publication called the VISION BOOK, and our own publication ‘STORIES TO TELL’ which has been one of our success stories. If there is any way, we can help you please feel free to contact me: David Heather, Executive Officer. 04 293 8236 | 0274 402 073
PVINZ BOARD MEMBER PROFILE KO MAATATUA TE WAKA KO TAURANAGA TE MOANA KO MAUAO TE MAUNGA KO POTUTERANGI TE MARAE KO PIRIRAKAU TE HAPŪ KO NGATI RANGINUI TE IWI
Born in Auckland and raised in the Waikato and a lonely Blues supporter living in Chiefs land, lead youth worker, Joe Graham has a wonderful family with four children (Emile, Kenan, Isabella and Lily) and a very patient, understanding wife, Rebekah. A potential modelling career beckoned but Joe decided to follow his passion to support and encourage rangatahi of all ages to achieve their potential and has been doing this for the last 17 years. Joe currently works for Te Wananga o Aotearoa as the head of recruitment and relationships. Joe has extensive knowledge in the areas of alternative education, youth training, youth guarantee, leadership training and community development. Joe also serves on a number of boards and trusts both locally and nationally. He is thankful to be able to serve the whanau of PVI and hopes that his contribution to the board will be of value. Nga mihi
P V I N Z #103 — 3
EDITOR SPEAK W E LC O M E eV I S I O N 103
Well here we are at the end of another busy year for PVI parents! We need to ask ourselves whether we have made a difference for our parents and families? There were road blocks but we did make a difference. We said we would network with families and we have started on that journey.The numbers were not as great as we expected, but we did connect a number of families. That became evident at the PVINZ annual conference in October where nearly 70 parents attended. We were at various stages with different aged siblings but we definitely networked! Julie Woods, 'That Blind Woman' from Dunedin was our MC for the weekend. Our keynote speakers were: • Nettie Cullen, a parent and a psychologist from Auckland. • Hayley Burton, talked to us about sibling rivalry and all those matters we live with. • Dr Adrian Secker, a parent who talked about medical matters like things to think about when your child is having surgery. • Nikki Stokes, a parent who reflected on her journey. • Arts Access Aotearoa. Late afternoon on the Saturday, Caitlin Smith a jazz singer, song writer from Auckland sang to us and also talked about her experiences growing up with a vision impairment. Our conference exit survey asked parents what services they most needed: • 88% said more information • 78% said more education resources • 44% said very important to have more advocacy
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• 87% said they had advocacy issues and needs with education issues • 38% said they had advocacy issues with medical • 67% said they had advocacy needs around funding • 64% said they advocacy needs around transition • 55% said the advocacy needs around family issues This further underpins the need for greater networking and communications. While there are exciting things happening in the education sector, many are suggesting they are not happening at a fast enough pace and without any assurances that there is going to be greater transparency and accountability of resources. Many of the suggestions for changes and accountability with the new Education Act were ignored and then at the start of the year parents were excluded from the review groups selected to study funding streams. The new pilot programme for Learning Support 0-8 has rolled out in the Bay of Plenty and we still do not know when and where we can upskill our parents and families about the part they will play in this new regime. We have been concerned for some time about the delays in developing a dispute resolution process that will apply in the school system. It was our parents' understanding over 12 months ago that a small working party including Parent to Parent NZ, the NZSTA and others would develop a DRP that was then to be referred to the sector. Parents across the special education sector were genuinely asking for a simpler, more accessible and fair process in resolving complaints and disputes in the sector.
The three workshops endeavoured to address those concerns. We now have NZSTA, school principals, human rights commissioner, children’s commissioner and the ministry of education all involved! That leaves the parent community without a voice which seems rather sad as we will be the plaintiffs in most of these situations. • We have not seen any sign of the parent community being represented in designer workshops? • We have not been asked to identify and train facilitators from our parent support groups. • We have not seen any sign of developing training opportunities or to have courageous conversations? It is very easy to forget that this issue of dispute resolution was discussed in 2010 by the then minister Rodney Hyde………eight years on we are still in limbo! An interesting quote from: EDUCATION THAT FITS: REVIEW OF INTERNATIONAL TRENDS IN THE EDUCATION OF STUDENTS WITH SPECIAL EDUCATIONAL NEEDS FINAL REPORT David Mitchell July 2010: "Many countries have legislation and/or policies on parent involvement in the education of SWSEN, at a minimum their participation in decisions regarding their children’s placements and their IEPs.In the UK, there are quite explicit prescribed statutory duties and guidance about various roles and responsibilities concerning parents’ involvement in the education of their children with special educational needs. The former are expressed in the Special Educational Needs and Disability Act 2001 and the Education Act 1996, and the latter in the Special
Educational Needs Code of Practice of 2001 (here after referred to as the Code)." One of the fundamental principles underpinning the code is stated as ‘parents have a vital role to play in supporting their child’s education’ . Similarly, critical success factors include ‘special education professionals and parents work in partnership’ and ‘special education professionals take into account the views of individual parents in respect of their child’s particular needs’ . Let us hope that we can see some positive moves around implementation and accountability in 2018. Included in our annual conference we staged our annual general meeting. We say a huge thank you to Georgia Kenyon who retires as a tangata whenua representative on the board. Georgia has served as a board member for a number of years. We welcome Joe Graham from Hamilton who was elected to that position. We must thank Julie Woods our MC for keeping the conference in a great spirit throughout. Thank you also to the Blind Foundation and BLENNZ staff who supported us during the weekend. Glengarry Wines, Jackson Estate Wines and three parents a big thankyou for your support. Enjoy the journey. David Heather.
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F A C E —T O — F A C E W O R K S H O P S PA R E N T 2 PA R E N T N E W Z E A LA N D Please find information below on next years training courses. These are free for parents and siblings living with a family member with a disability or health impairment.
SIBSUPPORTNZ – SIBSHOPS & SIBCAMPS The SibSupportNZ programme has been specifically designed to meet the needs of the brothers and sisters of people with disabilities. The programme gives children the chance to form their own support networks by making friends with children who are in similar situations as well as having a fun time away from the day-to-day stresses of family life. Common issues faced by children with brothers and sisters with a disability or health impairment include, isolation, resentment, embarrassment, guilt, feelings of neglect, a pressure to achieve and worries about the future. SibSupportNZ programmes are run by siblings, for siblings. OTAGO: Sat 24 Feb 18 AUCKLAND ( SIBCAMP ): 23 – 25 Feb 2018 WAIKATO ( SIBCAMP ): 16 – 18 March 2018 GTR CANT ( SIBCAMP ): 6 – 8 April 2018 CBOP - WHAKATANE: Saturday 7 April 2018 CENTRAL LAKES: Sat 11 Aug 18 (TBC) SOUTHLAND ( SIBCAMP ): 2 – 4 Nov 2018
TO EXPRESS INTEREST IN THE SIBSUPPORTNZ PROGRAMME, CLICK HERE
CO N TACT P2P O N 0508 236 236 P A R E N T 2 P A R E N T. O R G . N Z IF YOU'RE INTERESTED IN ANY EVENTS 6 — P V I N Z #103
IF YOU HAVE AN EVENT YOU WOULD LIKE TO LIST, CONTACT DAVID AT DAVID@PVI.ORG.NZ
R E N E W, C O N N E C T & R E F L E C T WORKSHOP The Renew workshop is a day designed to help parents connect and reflect. “It is an excellent way to reflect on your own experience as a parent of a child with special needs and to listen to others with similar experiences. A place to share and get support, have some validation, hear what other people go thorough but also to learn practical ways of dealing with the stresses and challenges of being a parent of a child with special needs.” Workshop topics include growing your support networks, building a resilient family, coping with stress and understanding grief. It is a great opportunity to meet other parents in your area.
GISBORNE: Thurs 8 Feb 2018 CBOP: Wed 14 February 2018 NELSON - RICHMOND: Tue 13 & Tue 20 Feb 2018 NELSON - BLENHEIM: Sat 24 February 2018
(SP) SUPPORT PA R E N T & CHAMPION YOUR NEEDS (CYN) TRAINING SP: This course is for parents and full time caregivers who have children with a disability or health impairment who would like to support others through the Parent to Parent network. The course covers communication skills, looks at grief issues and provides the opportunity for personal awareness where parents can consider their ability to support others in similar circumstances. At the conclusion of the training, parents are able to become volunteer Support Parents – Support Parents provide support to families contacting Parent to Parent. “Sometimes by helping others we help ourselves.” CYN: This course is for parents and full time caregivers who have children with a disability or health impairment who would like to learn more about advocacy. The course teaches parents how to plan for, raise issues at and negotiate during meetings. The course covers active listening and questioning skills, negotiating, planning, and challenging assumptions. CYN & SP – This course is the same as CYN, however there is an additional element at the end of day two which covers the Support Parent role and volunteer opportunities with Parent to Parent.
GTR CANT - ASHBURTON: Sat 24 March 2018
NELSON (CYN & SP ): 26 – 27 August 17
CENTRAL LAKES: Sat 7 April 2018
MANA & WELL (CYN & SP ): 16 – 17 September 17 GTR CANTERBURY ( SP ): 7 – 8 October 17
TO REGISTER FOR RENEW, CONNECT & REFLECT CLICK HERE.
WAIKATO (CYN & SP ): 18 – 19 November 17 GISBORNE (CYN & SP ): 10 – 11 March 18 TARANAKI (CYN & SP ): 24 – 25 March 18
A LT O G E T H E R A U T I S M NETWORK MEETING Learn about all that Altogether Autism can do to support you. Be upskilled on autism from both a professional and a lived experience viewpoint. Enjoy a light lunch with others living and working with autism. CENTRAL LAKES: Tue 20 Feb 18 CENTRAL LAKES: Tue 18 Sept 18
TO REGISTER CALL 0508 236236
AUCKLAND (CYN & SP ): 6 – 8 April 18 CBOP ( SP ): 19 – 20 May 18 CENTRAL LAKES (CYN ): Tue 12 – Wed 13 June 2018 (9 -2.30) OTAGO (CYN & SP ): 26 – 27 May 18
TO REGISTER FOR SUPPORT PARENT TRAINING CLICK HERE
TO REGISTER FOR CHAMPION YOUR NEEDS CLICK HERE
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PVINZ ANNUAL GENERAL M E E T I N G C H A I R R E P O RT 2017
I am pleased to prepare this report for you.
2. TO GROW PVI - ADVOCACY We have held two face-to-face board meetings in Auckland and 1 teleconference.
Since we last met your executive officer David and board members, Don, Matt, Adrian, Judith, Stacey, Linda, Nikki, Georgia and I, have worked with passion and commitment to ensure that our voice and that of our children/tamariki is heard and I thank you all.
We were delighted to be amongst the few who were invited to the launch of the NZ Disability Strategy 2016-2026, as part of the sector we worked to ensure that this document reflects your dreams and aspirations.
We thank David for continuing to ensure that we are represented at all levels of society, he has surpassed our expectations.
We contributed feedback towards the review of the ministry of health ‘Whaia te ao Marama 2017-2022’ (Maori disability action plan) draft.
Tena Koutou Katoa (Greetings)
I thank you our parent membership and your families/whanau for allowing us to work on your behalf. I thank the Blind Foundation for their support and the faith that they have in us. I thank our friends and the organisations that they represent on your behalf, ‘nou te rourou, noku te rourou ka ora ai te katoa’ ‘our visions and aspirations are one’. I would like to pay tribute to Jim Morunga who has recently passed away. Jim spent many years working for and supporting our community, his presence will be missed. Below is detail of our performance of the last 12 months. I have used as a guide our strategic goal headings, our performance aligns with David’s review of operations. 1. SUPPORTING AND ENCOURAGING PARENTS INFORMATION SHARING We have completed 2 E-Vision magazines and have received positive feedback. Our closed parent facebook page continues to be a popular social media option. The board has trialed using a private Facebook page as a means of communicating and sharing information, we have not yet discussed whether this is our best option. We continue to have discussions about our website and improvements will continue if required. In collaboration with Blind Foundation and BLENNZ we have hosted 10 regional parent meetings and are delighted with the response. Feedback will be used to help plan 2018 activities.
Several board members attended the Attitude Awards Dinner his is a wonderful celebration of how our country views disabled people and their families/whanau. This year is the 10th celebration, I hope that some or all of you will have an opportunity to attend. We were delighted to again be invited to the Blind Foundation annual business planning day, this gives us an opportunity to ensure that we have input on your behalf. We have enjoyed meeting with the Blind Foundation Board and CEO Sandra Budd and have thanked them for the opportunity to share our thoughts on behalf of you all. Attendance at the Launch of the Access Matters Campaign was a tremendous networking opportunity for PVI. Several board members attended the Access to Advocacy training in Wellington and Christchurch we now have a greater understanding of the role of advocates in supporting you and your families/whanau when required. We were delighted to have been invited to partner in opening both trainings, I have written a poem entitled ‘Look what makes a garden grow’ which has been dedicated to this campaign. We have completed Blind Foundation - Shared Service Agreements. Have attended the Blind Foundation AGM in Napier. We have Attended the Retina NZ Youth BBQ in Napier and are looking forwarded to the 2018 conference. We have attended a Parent 2 Parent training in Havelock North allowing us to grow our relationships with this national body and with parents from the Hawke's Bay region.
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In collaboration with Blind Foundation and BLENNZ we have hosted 10 regional parent meetings and are delighted with the response. Feedback will be used to help plan 2018 activities.
” 3.BUILDING A HEALTHY COMMUNITY - COLLABORATION We have attended Blind Sector Forum Aotearoa New Zealand meetings and enjoy sharing and learning with these likeminded organisations. We have met with principal of Halswell residential school in Christchurch, it was wonderful to have had the opportunity to see the beautifully completed student residence, to visit the school and speak with some of the students. It was troubling to hear that our kids are being turned away because of national funding criteria. We enjoyed a day of discussion with Karen Stobbs principal of BLENNZ and Elaine Gilmour senior manager assessment and teaching and other staff at BLENNZ Christchurch. We are looking forward to attending the BLENNZ conference January 2018. We supported David Lepofsky (Canadian lawyer and disability advocate) parent meetings in both Christchurch and Dunedin.
We will continue to consult with you so that we are sure that we are moving forward together. We will continue to build on our relationships with members of the Blind Sector Forum Aotearoa NZ coalition and other likeminded organisations. We will continue to consult with ministries of health, education and social development on your behalf as we know that change comes from consistent consultation. We have a strong and robust relationship with partners of the ‘Access Matters Campaign’ and we will work within this partnership to introduce new legislation that will benefit Aotearoa/New Zealand and its people. PAUL MANNING SCHOLARSHIP We are pleased to report that the Paul Manning scholarship has been awarded to several recipients during this period. If you would like to learn more about the scholarship, please contact David Heather.
I felt extremely honoured to have been able to attend the Kapo Maori Aotearoa biannual conference in Invercargill. This was a truly amazing experience and I would like to thank Chrissy Cowen CEO for her amazing commitment to our people. My hope is that you will have an opportunity to attend a conference in the future.
In closing I would like to share an ancient whakatauaki/proverb with you.
I have attended the Wairoa Blind Committee meetings and AGM and have been elected as secretary/treasurer and have volunteered as part of the Blind Foundation blind/week appeal and acknowledge the support of our communities.
“Return to your mountain your spiritual wonderland, your place of peace, may the gentle breeze of tawhirimatea rejuvenate you” for the journey ahead.
4.MOVING FORWARD TOGETHER - CONSULTATION We are committed to you and your families/whanau and will support and advocate alongside you when you ask.
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“Hokia ki o maunga kia purea koe i nga hau o tawhirimatea”
Ma te atua koutou hei manaaki (God bless)
Riripeti Paine, Chair.
BLENNZ
It is with great excitement and delight that BLENNZ announce the launch of their new website! This has been a work in progress for quite some time now and they are happy to share their new look with us. Huge thanks to Inga, Dave and the amazing team at Chrometoaster who have made this possible. Their support, patience and guidance during this process has been incredible.
There is a new section dedicated to providing information about revelant eye conditions, a section that explains our enrolments and enquiries process, as well as information about BLENNZ Curriculum and how this supports Aotearoa New Zealand curricula. You can also make contact directly with the board of trustees and download BLENNZ official documentation.
You can find the new website by visiting blennz.school.nz. Please take time to have a look around and see what they have been busy doing at BLENNZ and all of their news. You can also find out all about the history of BLENNZ and find contact information for the senior management and leadership teams, and centre managers in the ‘All About BLENNZ’ section.
Enjoy checking out their new site and feel free to get in touch with any feedback at info@blennz.school.nz. Please share this with anyone who would would like to know more about BLENNZ. With thanks, Karen
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I A M 'T H AT' PA R E N T Words: Karen Copeland Written for: Champions for Community Mental Wellness championsforcommunitywellness.com
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This post is inspired by a recent post that has gone viral titled: “Dear Parent: About THAT Kid”, by an educator in Calgary, Alberta. It is a powerful post and I encourage you to read it. While I was reading the post, I thought about how easy it is to assume instead of be curious. I thought about the label “THAT” and how we become fearful of this – we don’t want to be known as “THAT” parent so we stay quiet. I think it is time to be more curious about “THAT”. This post is dedicated to all the parents out there who are “THAT” parent. I am that parent. Dear professionals: You know me, I am the one who asks questions. The one who seems like she is always asking for information. The one who makes suggestions on the IEP, or seems to go on and on and on about the concerns she has about her son. The one who will turn a 15-minute scheduled meeting into 45 minutes. The one who does not hesitate to let you know when things are not going well for her child. The one who can get emotional and (unintentionally) make everyone feel yucky. The one who requests documentation and wants to look at her child’s file. The one who says she wants goals to be more specific. The one who just doesn’t seem to go away and leave you alone to do your job. The one who keeps her own file. Dear other parents: You know me, I am the one who always looks a bit off in the morning. The one who is pleading with her child to enter the school. The one who stands off to the side and appears to be waiting for something to happen. The one who doesn’t get her child to apologise right away when he has done something wrong. The one who picks her child up early from school and doesn’t seem to get involved in anything. The one who can’t seem to get her child to behave like all the other kids. The one who doesn’t parent her child the way you do. • I would love to tell you how I wasn’t always that parent. • I would love to tell you about how when our child first started school I trusted and believed that he would be okay, even though we knew he was just a little bit different than the other kids. • I would love to tell you how many times we were told to just leave things up to the school staff and our son would be fine. • I would love to tell you about the time when I became concerned about things that were happening for our son, concerned enough to book an appointment with a pediatrician. • I would love to tell you that he saw us for fifteen minutes, made a snap diagnosis and told me to put our son on medication.
• I would love to tell you about the time we saw a counsellor for one hour, who told us our son had a different diagnosis and we needed to find him a special school. • I would love to tell you about the looks of confusion, pity and sometimes even derision that have been cast my way on the playground. • I would love to tell you about the times that I stood alone outside the school waiting for my son, with no one approaching me. • I would love to tell you about the time I had to console my son because he finally realised that everyone else in his class was getting invited to birthday parties, except for him. • I would love to tell you that when my son doesn’t apologise right away it is because he can’t. • I would love to tell you that the way his brain works takes longer than others, and if I were to force him to apologise it wouldn’t go well. I would love to tell you to be patient and to just allow him some time to figure it out. • I would love to tell you that if you do this, he will apologise in the most sincere way. • I would love to tell you about the time that I provided a teacher with a letter that highlighted my son's strengths, challenges and how to best approach these, only to be told: “I prefer to find things out for myself." • I would love to tell you about the time my son sat in the hallway all day because he refused to complete a writing assignment at the beginning of the day, even though his IEP clearly stated he was to be presented with a distracting activity when he gets stuck. • I would love to tell you about the notes that would come home in my son’s planner detailing the negative events of the day for anyone to read, or about the time I sat in a parent teacher interview and was told “all” the other parents in the class have said my son is a bully. • I would love to tell you about trying to figure out what services might be available to support our child and our family. • I would love to tell you about finding out about a certain resource, and feeling hopeful only to placed on a waitlist for at least six months.
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• I would love to tell you about how I became detached from any and all school activity because it did not matter what I said or did, it impacted my son and likely gave me an ulcer. I didn’t want to become known as that parent. • I would love to tell you about the time a psychiatrist saw us for 15 minutes and determined our son should no longer qualify for a public assessment, and then followed up with a letter saying we had provided non-specific information to support our concerns, because apparently 10 pages of documented observations are considered to be non-specific.
But most of all, I would love to tell you that I am proud of my son and his courage in facing each day. I would love to tell you how I am proud of myself for becoming more knowledgeable about the challenges my child faces, learning about the systems we access for support, learning the jargon so I don’t feel dumb sitting at the meeting table when an acronym is used.
• I would love to tell you about the time that my son was in desperate need of connection to a medical professional. • I would love to tell you about the ways we were handed off from one service system to another, no one wanting to provide the support that had been recommended. • I would love to tell you about the time we were trying to get some support and were told to call a ministry agency that we clearly did not meet the mandate for. And yet, we were still required to do this. • I would love to tell you about sitting in meetings and hearing about all the bad things our son was doing. • I would love to tell you about all the times we have been made to feel that our parenting was the reason our son was the way he was. • I would love to tell you about the time I was a “fly on the wall” and overheard some brutal comments about my child. • I would love to tell you about all the times we were told our son simply couldn’t handle a full day of school and that we needed to pick him up early. • I would love to tell you that this meant I needed to give up my employment because I was unable to fulfill my obligations. • I would love to tell you that even though we did this, we did not receive any support from any organisation for the time our son should have been in school. • I would love to tell you about how year after year, we have to explain our son to new people because it seems like the information does not go forward to the next grade in a timely way.
• I would love to tell you about how some mornings when I am walking my dog, I reflect on all of this and realise how easy it is to isolate myself from this world that sometimes does not understand. • I would love to tell you about the people who have come into our lives on our journey who have believed in us and given us hope. • I would love to tell you about the one time we were asked the question “where would you like to see your child when he is an adult, and what can we do to help get him there?”. • I would love to tell you about the time I broke down in tears in a meeting, because my child’s grade six teacher said she loved having him in her class, that he was polite and respectful. • I would love to tell you that was the first time anyone had ever said that to us in a meeting. • I would love to tell you that I don’t want to be that parent but then I would not be telling you the truth. I am thankful I am that parent. I would love to tell you how thankful I am to have discovered my voice, that I have become aware of my rights as a parent in these systems, and that I am not afraid to let this be known. • I would love to tell you that despite all the challenges we have experienced, I continue to have faith and hope for my family, I believe we will be okay. • I would love to tell you that I would much rather be that parent, than staying silent and letting things happen as they may. • I would love to tell you all this. But you rarely ask.
• I would love to tell you about all the services and supports we have tried to access for our child over the years, how much we have paid for these and what we have found to be most useful.
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If you happen to decide you would like to, I would love to tell you our story.
A PA R E N T'S REFLECTION Regardless of our son’ and daughter’ disabilities, our real job as parents is to harness all the confidence and courage we can for us and model that for our children. On this journey together we all need plenty of it. And in modelling it early on, we help our sons and daughters prepare for the day we won’t be with them except for that which we taught them. In doing so, we will find many wonderful people who will make all the difference in our world. We will encounter many difficult people and institutions and policies. When life becomes difficult, advocacy begins in a new way. The word
advocate comes from the Latin, advocatus [ital advocatus], which means: "to call, or to answer the call to help another". This is the parent’s task. This is the task that requires confidence and courage…. All that we can muster. Someone once said: “ In this life, trouble is to be expected. Misery, though, is optional.” As parents we need to be able to find those who can help in their best way and to establish our place of equality with them.
G O I N G TO T H E AT R E W I T H YO U R C H I L D: A S U RV I VA L G U I D E F O R PA R E N T S Words: Adrian Secker PVI Board Member, Parent and Surgeon
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Accompanying your child to an operating theatre and leaving them after they have been anaesthetised is a very stressful thing for any parent. I have gone with our son to theatre for numerous operations, for a whole range of things: from something as simple as grommets, to high-stakes surgeries like emergency neurosurgery. As a surgeon who operates regularly on children I also see things from the other side. The following is adapted from a talk given at the 2017 Wellington PVI Meeting, and may be freely circulated.
you wish to have human tissue returned to you. On the day of surgery skin markings are often made to ensure the correct side is operated on, or that the correct procedure is performed. WHAT DOES ANAESTHESIA DO? An anaesthetic puts the brain in a sleep-like state so that surgery can be done without pain and physiological stress. Relaxation of muscles may be required for some types of surgery, in which case breathing is assisted by mechanical ventilation.
BEFORE THEATRE: THE DECISION TO OPERATE Mostly decisions on whether or not to do an operation will take place in a surgical outpatient clinic. There is an opportunity to discuss the procedure and outline any concerns you have. Most clinics are equipped with educational material around common surgical procedures. You will be scheduled for pre-surgical checks with the paediatric preadmission nurses, who will explain further what will happen. If your child has risk factors for anaesthesia or the procedure is major you will meet an anaesthetist who will assess your child before their surgery. Emergency surgery allows for less planning, and can potentially be somewhat disempowering for parents.
Suppressing brain activity with anaesthesia occurs in predictable stages. The first stage actually results in stimulation and disorientation, until levels of anaesthetic build up sufficiently to suppress brain activity. Alcohol works just like this: a couple of drinks can make you uninhibited and want to dance, a whole lot more eventually makes you “comatose”. As your child goes through induction of anaesthesia, the initial “excitation phase” may cause them to thrash or move their limbs uncontrollably which can be upsetting if you are not expecting it. That excitation phase is more obvious when gas induction is used as it takes longer for drug levels to build up – intravenous injection allows for faster induction.
TIPS FOR OUTPATIENT CLINIC: • Take support if you feel the need to – a partner, grandparent or friend. Make sure they know what their job is: to listen, maybe to make notes, or remind you of an important question you wanted to ask. They should be there to support you, not for their own curiosity. • Write down questions before you go to clinic. If they come to you afterwards, write them down anyway, you will see the surgeon again on the day of surgery. • Surgeons are experts in their field – remember though that you are the expert when it comes to your own child. You know a lot about their visual condition and other medical issues that your surgeon probably doesn’t, so make sure you have explained your child’s health and spoken up about any worries you have.
THE OPTIONS: 1: MASK INDUCTION WITH GAS A soft plastic mask is placed over your child’s mouth and nose and they breathe in anaesthetic gas until they are asleep. This is the way most babies and small children are induced - it avoids putting a needle into a vein while they are awake, though one will still be put in when they are asleep. If your child is small you can cuddle them on your lap while this happens; bigger children will lie on the operating table and you can still cuddle them. If your child struggles against the mask they may need to be gently restrained by the theatre staff – this can be upsetting for you as a parent but on the plus side, a struggling child will breathe up and the gases tend to get into the bloodstream faster.
GIVING CONSENT Children under 16 require written consent for surgery and anesthesia to be given by a parent or guardian. Older children may be engaged in the consent process and be asked to sign alongside your signature. Consent for surgery is an involved process and you will be asked to consider a number of things: the taking of images in theatre, your position on blood transfusion and whether
2: INTRAVENOUS INDUCTION WITH INJECTION This is faster and the excitation phase is much shorter, indeed probably not noticeable. It does mean putting a line into a vein with a needle while your child is awake; numbing skin creams help to some extent with this.
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Your presence as a parent is a big help to suppress your child’s anxiety as they go off to sleep, even though you will naturally feel anxious yourself.
” PREPARATION FOR ANAESTHESIA The goal is a calm child, who knows what is going to happen and is engaged with the process – though obviously this is not what you always get! Thorough explanation beforehand and showing your child what the mask looks like will help them understand what is going on. In very small children the focus of explanation will be toward you as the parent. Older children will be engaged in the process of deciding between mask and IV induction, especially if they are “frequent fliers”.
WAKING UP AFTER ANAESTHESIA This starts in the operating theatre and finishes in the PostAnaesthesia Care Unit (PACU), or “Recovery”. The PACU staff have specific skills around management of the airway, pain relief and ensuring surgical safety following a freshly-completed operation. Your child will remain in PACU until the staff have ensured they are able to safely breathe unassisted and have appropriate pain control. That favourite soft toy, which sat on the bed outside while your child was having their operation, will be a comfort when they wake up.
Tools to distract your child while they are induced will help– an ipad, listening to a favourite song, cuddling their favourite soft toy.
CAN YOU BE THERE WHEN YOUR CHILD WAKES UP? The PACU is a busy environment with little privacy, and this is usually not feasible. Some PACUs have individual glassed-off areas where parents can be. The PACU staff know that you are the best comfort for your child, and they will hand them back to you as soon as they are satisfied the situation is safe for that to happen.
THE PARENT IN THEATRE Your presence as parent is a big help to suppress your child’s anxiety as they go off to sleep, even though you will naturally feel anxious yourself. The benefit is much less for young babies, and you will not typically be asked to come if your child is under six months. Six months to a year is a grey zone and will be dependent on the individual anaesthetist; you would not be refused if you wanted to attend however. Ideally one parent goes with your child. Both parents can go, but things tend to be calmer with one. Once anaesthesia has been induced and your child is asleep your job is done: you will be asked to give them a kiss and you will be shown out of the theatre area. Leaving your child is a tough moment! Most parents will shed a tear, a normal thing for a loving parent to do. The staff in theatre are highly aware of the responsibility they have accepted for your precious child. DURING THE OPERATION Don’t leave the hospital, and tell the ward staff where you are going if you move around the hospital. You should make sure you have your phone and the staff have your number. It is not common, but in the face of a surprise finding during surgery the surgeon may want to talk to you if there are different ways of fixing something. After a major surgery you will usually get a call from your surgeon to say how everything went, though this is not practical for a busy list with a large number of minor procedures.
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THE INCONSOLABLE CHILD AFTER ANAESTHESIA: EMERGENCE DELIRIUM ( ED) Sometimes when children come out of anaesthesia they can cry inconsolably, thrash around with their limbs and be seemingly unaware of people around them, even parents. This is recognised as a specific phenomenon called emergence delirium. It is unpredictable, and is not a sign of a bad operation or a bad anesthetic – it is similar to and looks the same as a child having “night terrors”, who doesn’t appear to be properly awake. Parents help in this situation, and it does wear off completely – but it is upsetting for a parent to see. There are strategies that anesthetists can try to reduce the risk of ED and if your child is prone to this you should let them know. Conversations at the PVI conference after this talk suggested to me that visually impaired children may be more prone to ED – perhaps there is a study to be done! IN CONCLUSION The key to a happy theatre visit are a calm, engaged, well-informed parent and child who have had questions answered and concerns and realistic expectations addressed. You as a parent should feel part of a team working towards the best outcome for your child.
PVINZ MEMBERSHIP A P P L I CAT I O N F O R M PRIVACY ACT This information is being collected for the use of Parents of Vision Impaired (NZ) Inc only and will be kept confidential.
SEND TO: Parents of Vision Impaired NZ Inc, P O Box 513, Waikanae, 5025
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P V I N Z #103 — 19
PVINZ
CO N TACT U S Parents of Vision Impaired (NZ) Incorporated Executive Officer David Heather PO Box 513 Waikanae 5025 04 293 8236 027 4402 073 david@pvi.org.nz
Upper North Island Board Member Mrs Stacey Dodd 021 133 8949 mrsstaceydodd@hotmail.com
Physical Address: Level 1 11 Mahara Place Waikanae
Upper South Island Board Member Mr Adrian Secker 027 201 1028 adrian.secker@gmail.com
Let us introduce our PVINZ Inc Board Members: Chairperson and Tangata Whenua Board Member Mrs Riripeti Paine 0226 194 340 riripeti.paine@gmail.com
Lower South Island Board Member Mrs Judith Hyslop 027 250 4018 judithhyslop@xtra.co.nz
Treasurer Central North Island Board Member Mr Donald Fairgray 027 286 7798 don@pvi.org.nz Upper North Island Board Member Mrs Linda Moore-Carter 027 320 2693
PVI.ORG.NZ
Lower North Island Board Member Mr Matthew Hunt 021 173 4300 matt@likeable.org
Tangata Whenua Board Member Mr. Joe Graham Hamilton 027 612 1507 Anywhere in New Zealand Board Member Ms Nikki Stokes 022 693 7653 nikki.stokes@icloud.com nikkins.08@gmail.com
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We also have a private group for the parents.