For parents of children with Microtia: Strategies to help your child in the school environment

Guest blogger, Matthew Ridley (The Centre for Appearance Research, UWE Bristol), writes:

‘Will my child be OK?’ ‘Will my child be OK in the future?’ Are perhaps some of the questions you as parents of children with Microtia are asking yourselves (and maybe others!).

The school environment, one where your child will be surrounded by peers, is likely to be the place that your child begins to become aware that they look different. It is here where your child is likely to face their first questions. Furthermore, it is here where there is potential for teasing and bullying. As a result, the school environment is an important one. ‘Will my child be Ok at school?’ is a more specific question of concern.

The good news is that there are things that you and your child can do in order to prepare for such scenarios. So, what strategies can you as parents use to help prepare your child when faced with such questions and/or teasing/bullying?

One size does not fit all

Obviously, specific strategies will very much depend on the context – the age and educational stage of your child. For example, school experiences may differ in their large secondary school, when compared to the small primary school they may have attended.

That being said, ‘one size does not fit all’, and the strategies that are used may need to be adapted in relation to the context. In addition, experiences will not be the same for one child with Microtia to the next, so again the ‘one size does not fit all’ applies.

Having said that, there are some constants in approaches to questions and comments, and it is these that will be predominantly discussed in this blog post.

Social skills techniques

First and foremost, it is important that you arm your child with social skills techniques. Start with the basics – saying hello and smiling upon meeting a friend (old or new). In addition, help your child with conversation openers so that they are ready to discuss something they have in common e.g., a school lesson, music, sport, a TV programme. Finally, encourage your child to stand tall and to use eye contact.

Preparing your child for questions/comments

Arm your child with a repertoire (age appropriate) of responses to questions. The intention being, that once they are able to they can use as they see best in the moment. Central to this preparation for questions is the notion of choice – they have control over how much they want to say in response to the question, which is important.

See below an example with a variety of potential responses that your child could use in relation to how much they want to tell the questioner, as well as in relation to how they are feeling:

Q: Why does your ear look like that?

1. “I notice you are looking at me. Are there any questions you want to ask me?” (open, engaging & also direct)
2. “My ear looks different because I was born with Microtia.” (factual)
3. “I was born with a condition affecting my ear. It doesn’t hurt.” (reassuring)
4. “I’ll tell you about it another time.” (shut down the topic)
5. “Please don’t stare at me. It makes me uncomfortable.” (assertive)

Finally, it would be great to work on developing your own responses together with your child.

Working together to tackle bullying/teasing – an ongoing conversation

Should your child experience teasing/bullying, the best way to approach this is to encourage open discussions of what went on and what was said. This way, you can develop a strategy together with your child – most importantly one that they feel comfortable with.

For example, as a starting point, you could encourage them to write down that was said and how it makes them feel. In addition, you should encourage for them to speak to someone they trust at school when this happens (i.e., as well as you), and you could help them to identify a suitable person for this.

Thank you for reading, I hope that this has been helpful. In summary, the following are the key points:

• Arm your child with social skills techniques
• Arm your child with a repertoire of responses that they can eventually use as they feel best in the moment
• Empower your child with a sense of ownership in developing the strategies

I can be contacted with any questions / comments in the space below, or at Matthew.Ridley @ uwe.ac.uk

For more on the work of the Centre for Appearance Research, see http://www1.uwe.ac.uk/hls/research/appearanceresearch.aspx

 

 

Guest posts from Matt Ridley, Centre for Appearance Research

My name is Matt Ridley and I am a Psychology PhD Researcher at the Centre for Appearance Research (CAR) in Bristol.

I was delighted to attend the Microtia UK family event a few weeks back and meet many who are involved with this great charity. I was really impressed by the event, and indeed to see for myself the great work that Microtia UK are doing.

I gave a talk at the event entitled, ‘Developing confidence in a child with a visible difference’. Over the course of the next few months (or so) I will provide more detail on some of the strategies I covered in the talk in separate blog posts.

I can be contacted with any questions / comments in the space below, or at Matthew.Ridley(@)uwe.ac.uk

For more on the work of the Centre for Appearance Research, see http://www1.uwe.ac.uk/hls/research/appearanceresearch.aspx

Nearly £9,000 raised for Microtia UK in the North London Half Marathon

In March 2017, 10 runners completed the North London Half Marathon, earning sponsorship of £8,830 for Microtia UK.

All money raised will provide support, resources, information, and events for children, adults and families affected by microtia. Microtia UK is a peer-support oraganisation, run entirely by volunteers, and funded exclusively by donations. The thousands resulting from this event will make a huge difference to our community.

So why did the runners decide to take part? One explains: “I ran because since my son was born with right sided microtia and atresia two years ago, Microtia UK has been invaluable to me. I have turned to the community it has set up for advice and I enjoy being part of this group who support each other on a daily basis.

‘Most importantly, the information available through Microtia UK has increased my understanding of the condition and its impact, so that I can do my best…for my son.’

Another parent wants ‘to be a good role model to his son,’ who has microtia. By demonstrating success in challenges like this marathon, he will help him to have ‘a strong sense of self confidence.’

Raising money after receiving help from Microtia UK is a theme for many of the runners, with one reporting: ‘The information from the charity answered so many questions for us, and meeting other families, adults and children with microtia was an amazing support for us and still is.

‘The advice from Microtia UK…make[s] sure we can make informed choices for [our son’s] future. Not all families have that guidance as not all professionals know about Microtia.

‘So to say thank you to Microtia UK, and to show our funny, smiley, lively little boys that Daddy used to move more than to the fridge and car before they were born, I ran my first half marathon!’

Another runner, who himself has microtia, agrees with the importance of ‘show[ing] that anything can be achieved in a short period of time if you put your mind to it.’ He also ran ‘for those who couldn’t,’ and ‘to raise awareness of microtia and the work that Microtia UK is doing.’

Close friends of families with microtia were among those completing the challenge. One explains: ‘I know of her family’s journey and the difficulty she went through in the beginning to really understand microtia and obtain support.

‘I have attended and worked for a few functions for the organisation and was incredibly impressed with the aim and strategy with respect to medical advancement, as well as the equally important aspect of helping families in need of emotional support…struggling to make sense of the condition and successfully navigate the system to obtain proper care. This was a fantastic opportunity to push myself toward an ambitious goal.’

Another friend agrees: ‘Although the training was hard, the whole experience had been amazing, and I hope to be able to continue raising money for the charity in the future. It’s a fantastic cause that does so much for the families affected by microtia, and it’s been a privilege to be a small part of the fundraising effort.

‘Running was my way of showing [my friend] and his lovely family my support and friendship. It has been very humbling to meet some of the team, and see just how much time and effort everyone puts in.’

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For more information on the work of Microtia UK, see: http://www.microtiauk.org/aims_and_objectives.php

If you are interested in raising funds through marathon sponsorship or through any other means, please contact Nicola on nicola@microtiauk.org . Nicola is Director of Sports Fundraising – she has microtia, and has just completed the Norwich Half Marathon to raise funds for our charity.

Part 2. GOSH / RHSC ear reconstruction study: what are the main findings on children’s feelings about their new ears?

42 children whose ears were reconstructed by Neil Bulstrode at Great Ormond Street took part in this study – 37% of those who were asked to complete questionnaires. 27 children who undertook reconstruction with Ken Stewart at the Royal Hospital for Sick Children also replied – 56% of those contacted.

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35 out of 42 GOSH patients who took part in the research said that they were ‘satisfied with [their] new ear,’ and 7 out of 42 were not satisfied. Among RHSC patients, 23 out of 27 said they were ‘satisfied,’ and 4 out of 27 were not.

34 out of 42 GOSH children in the study said that their ‘new ear is similar to other ear,’ and 8 out of 42 that it is not similar. This compares to 19 out of 27 RHSC children who said their ear was ‘similar,’ vs 8 out of 27 who did not.

Among the GOSH patients, more were ‘satisfied with [the] shape’ of their new ear (40 out of 42) than were ‘satisfied with [the] size’ (34 out of 42). In contrast, more RHSC patients were ‘satisfied with [the] size’ (23 out of 27) than ‘satisfied with [the] shape’ (12 out of 27).

The questionnaires also asked about behaviours associated with children’s new ear. 4 of the 42 GOSH patients responding said they hide their new ‘ear with [a] hat,’ and 5 of the 27 RHSC patients.

6 of the 42 GOSH patients said they are ‘anxious about seeing [the] hairdresser,’ along with 5 of the 27 RHSC patients. Just 2 of the 42 GOSH children said they hide their new ear ‘in photos,’ compared to 7 of the 27 RHSC patients.

39 of the 42 GOSH children said they ‘would have [their] ear made from rib again,’ while 4 of the GOSH children said they ‘Would prefer to do nothing about [their] ear.’ This compares to 22 of the 27 RHSC patients who said they ‘would have [their] ear made from rib again,’ and 2 of the RHSC patients who said they ‘would prefer to do nothing about [their] ear.’

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It’s important to remember that only 37% of the GOSH patients who were asked to complete questionnaires replied, and 56% of the RHSC children. Those who didn’t respond may have given different answers, so these numbers can’t tell us about their outcomes.

However, what findings do show is that there is variety in experience and feelings about reconstructed ears, and that results are not always the same for different individuals.

Comparisons between GOSH patients and RHSC patients are made to highlight this variation. Again, however, remember that many patients did not reply to the questionnaires, and we can’t know what they would have said. So this study’s findings are not a comprehensive comparative assessment of the quality offered by the two surgeons.

Lastly, it is useful to remember that the study’s timeframes for reconstructions at the two hospitals are very different. The GOSH patients completed their surgeries between 2011 and 2013, while the RHSC patients completed theirs as far back as 2003.

It is possible that this could have some bearing on the different replies from children across the hospitals. For example, the much higher satisfaction rate of GOSH patients with the shape of their new ear may have something to do with the time at which their surgery took place. It would be interesting to know about the feelings of GOSH patients whose surgery took place before 2011.

There is one final, crucially important, point about this research. It has no comparison group of children who have not had reconstructive surgery. It can’t tell us how happy with their ears these individuals are, overall, in contrast to those who chose reconstruction. And it can’t tell us how study children felt before their surgery. But it helpfully gives us an idea of the current feelings of the small group of children who took part.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract

Part 1. GOSH / RHSC ear reconstruction study: how did it work, and who took part?

The researchers contacted two sets of children. The first were those who had completed ear reconstruction at Great Ormond Street Hospital, with Neil Bulstrode, between 2011 and 2013. The second were those who completed reconstruction with Ken Stewart at the Royal Hospital for Sick Children, between 2003 and 2013.

115 GOSH patients, who had their operations between eight months and three years before this study, were sent questionnaires. GOSH patients were sent two different surveys, and only the results from the second are discussed in this blog.

This is because the second is better designed than the first, and because the second questionnaire was also sent to RHSC children, which allows comparisons. 42 of the 115 GOSH patients contacted returned the second questionnaire (37%). The average age of these children at completion of surgery was 11.

A higher proportion of RHSC children completed their surveys: 56%. However, a smaller number of patients were contacted – 48, with 27 returning the questionnaire. The average age of these children at completion of surgery was 14.

So all the findings that will be discussed in this blog are for 27 individual RHSC patients, who had surgery across an 11 year period. For GOSH patients, they are for 42 individuals who had surgery over a three year period.

The fact that only 37% of GOSH patients and 56% of RHSC patients contacted took part in this study means that we have to be very careful in understanding its results. The children who did not reply may have given very different answers to those who did.

We can’t assume that this research applies to all individuals who have had surgery with Neil Bulstrode or Ken Stewart. As discussed in the original article, it is possible, for example, that some children may not take part because of concerns about how their replies may affect their ongoing care.

It is also possible that those who have had more negative experiences are more likely to reply – or, alternatively, those who are happier with the results of their surgery are happier to respond.

Despite these limitations, what this study can very usefully tell us is how those people who took part in it feel about their ears after surgery.

This may help with considering the pros and cons of reconstructive options (including doing nothing), and raise questions to ask surgeons. The surveys also included questions on factors such as post-operative care and pain relief – and answers on these points may also help planning and decisions.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract

New study looks at ear reconstructions at GOSH and RHSC

2017 sees the publication of a new study by Neil Bulstrode, Ken Stewart, and colleagues. It contacts rib graft ear reconstruction patients who had surgery at Great Ormond Street Hospital (Neil Bulstrode’s cases) and the Royal Hospital for Sick Children (Ken Stewart’s cases).

The study asks children how they feel about their new ears, as well as questioning them on other experiences during and after surgery.

There’s a lot in the research that will be useful to any microtians considering reconstruction, so this blog will unpick it across several posts.

1. The first will describe how the study was carried out, and the children who took part.
2. The second will highlight some of the main results on children’s feelings about their new ears.
3. The third will look at other experiences related to the surgery.
4. The fourth will discuss implications of the research for children considering reconstruction – including possible questions to ask surgeons and / or people who have experienced surgery themselves.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract : Akter, F., Mennie, J,C., Stewart, K., Bulstrode, N. (2017). Patient reported outcome measures in microtia surgery. Journal of Plastic, Reconstructive & Aesthetic Surgery (70), 416-424.

If you would like to read the original report and can’t access it (you usually need a university account to get through the paywall), the corresponding author should be able to provide you with a personal copy: fa347@cam.ac.uk / farhanaakter@doctors.org.uk

Rights and resources for people with Microtia

Today is the UN’s Human Rights Day, which ‘calls on everyone to stand up for someone’s rights’ – including ‘a person with disabilities.’

As hearing loss is classed as a disability, children and adults with Microtia and associated deafness are protected under the UK Equality Act (2010).

The Equality Act legislates against direct and indirect discrimination, harassment and victimisation. It covers work, education, and a range of other situations and environments – such as public services.

It covers both the person with a disability, and people who are associated with or support them – such as friends or family members.

The National Deaf Children’s Society (NDCS) has produced a guide to the rights of pupils in education, and can advise by phone or email.

For adults, Action on Hearing Loss provide information on rights and sources of advice.

UN Human Rights Day: http://tinyurl.com/MicrotiaUK-HR

General information on the UK Equality Act (2010): http://tinyurl.com/MicrotiaUK-EA2010

NDCS guidance: http://tinyurl.com/MUK-NDCS-Rights

Action on Hearing Loss resources: http://tinyurl.com/MUK-AoHL-Rights

 

#toylikeme celebrates difference and diversity

#toylikeme is a fast-growing movement calling on ‘the global toy industry to positively represent 150 million children with disabilities and difference worldwide.’

Set up in 2015 by journalist and mum Rebecca Atkinson – who is herself deaf – #toylikeme has featured in news outlets around the world: including the BBC, Mail, Guardian, Yahoo, Dystractify, Upworthy and Al Jeezera.

As well as lobbying big manufacturers like Lego and Playmobile to include more diverse representations in their products, #toylikeme’s website features small businesses who custom-make a fantastic variety of toys: including some with Microtia!

The site also includes a gallery of makeovers for homemade inspiration, and highlights existing representative products (such as a cuddly microtian Nemo).

#toylikeme says: ‘Positive representation matters. To see yourself reflected by huge toy brands like Playmobil and Lego is about more than just a toy. It’s about these brands sending out a powerful message that everyone should be included and celebrated. Let’s normalise diff:ability for what it really is, part of the natural spectrum of human life.’

http://www.toylikeme.org/

@toylikeme

https://www.facebook.com/toylikeme/

Welcome to the Microtia UK blog

Welcome to the Microtia UK blog. Here you’ll find news and updates on Microtia-related stories and developments – from the UK, and the wider world.

If you’ve stumbled across this page by chance, and would like to know more about Microtia, or about resources for people with this condition and their families, please visit our main site: http://www.microtiauk.org/

If you have an idea for a story, please comment in the box below. We’re interested in everything Microtia: hearing technologies, new research, psychological and support resources, personal accounts, reconstructive techniques…plus anything else that might be relevant to the Microtia community!