Anne and Brian Make Fantastic Donation

Mrs Pearce hands her cheque over to Laura MacDonald

Mrs Pearce hands her cheque over to Laura MacDonald

The story of one little boy inspired Anne Pearce and her husband Brian to donate an incredible £5,000 to Cerebra!

Anne first heard about Cerebra from one of our Ambassadors, Nicola Tilson. Nicola has received support from our Sleep Practitioner Laura MacDonald for her son Alfie.

Nicola said: “Alfie had been diagnosed with a complicated medical condition. At that point, he had retired into his own world and we weren’t really sure how to bring him back.

When Laura came, it was a turning point for us. Since then, Alfie’s gone from strength to strength. It’s been progress after progress.”

Nicola has held several fundraising events for us, including several at Nationwide building society, where she works and that’s where Anne met Nicola and was touched by her family’s story.

Anne said: “I’ve been a customer for 20-odd years. I got to know Nicola and the fundraising they’ve done here. Nicola told me she wanted to fundraise for Cerebra for what they’ve done for her little boy.” When Nicola told Anne about her latest fundraising event, and she just simply had to be involved.

Nicola said: “Mrs Pearce, being Mrs Pearce, wanted to help. She came in to the bank a few days later with a cheque and we were absolutely blown away”.

Anne and Brian are both battling cancer themselves but still feel compelled to help in any way they can. As well as helping with donations, Anne has also knitted outfits which were used to clothe premature babies at St James’s Hospital in Leeds.

Thank you Anne and Brian!

Massage Helps Improve Bedtime Routine

Our Sleep Practitioner Pattie Everitt was recently able to help Freddie and his mum Abbie build a better bed time routine, improving the quality of family life for everyone.

Freddie had problems with night waking from around 9 months old.  He was not crying or upset but tended to talk to himself, shout and make loud noises. His mum, Abbie, got in contact with us when Freddie was 4 years old. He went to sleep fine each night, but was often awake for long periods during the night, sometimes up to 4-5 hours. Abbie would try to calm him down and get him back to sleep, but nothing seemed to work.

Pattie Everitt, one of our Sleep Practitioners, went to visit Abbie to discuss some new ideas she could try.  Although he was settling quite well, they talked about how making Freddie more relaxed before bed might help him sleep better at night.  This included introducing a wind down routine that was relaxing for him, and Abbie decided to try a back massage to help calm him down before bed.  They also discussed using weighted objects, such as heavy cuddly toys/ wheat sacks that might help Freddie feel more secure. Pattie also suggest a slightly later bedtime as he was going to bed quite early.

After some ongoing email support, Abbie managed to improve Freddie’s sleep quite a bit. The waking in the night reduced enough so that is was more manageable, with him not waking until around 4am (then going back off to sleep), so sleeping for a much longer block. He also enjoyed the back massage!

You can find out more about our Sleep Service on our website.

Samuel and Angel Bake Some Sweet Treats to Raise Funds

Samuel, Angel and Jacky

Samuel, Angel and Jacky

On Saturday 1st July 2017, Samuel Turner and his friend Angel raised £50 for Cerebra at a fete at Treetops, a specialist school in Essex.

They made some delicious cakes to sell at the fete and even made a very special Cerebra cake which was of course Samuel’s favourite!

Cerebra Cake

Cerebra Cake

Samuel said: “In my heartfelt experience, it’s never a matter about what it means to anyone, this lovely Cerebra cake is not just to raise money for the charity, it’s about hope and capability to show that there are children around the UK that are suffering problems inside and I believe that we should help to find a solution because people might be unaware of the child’s problem.

I’m proud to make this special cake. I think some student and pupils would love the cake I made and me, my mum and my friend Angel have felt the love for being at Treetops School to help Cerebra. This does makes me, my family and my friend Angel feel so special for our great efforts since I started helping the charity at the start of 2017.”

For Samuel’s friend Angel Jolly, it was a life changing activity unlike anything she has ever experienced.

Fete table

Fete table

Angel said: “We all were excited to be at Treetops fate. Once we got there, we all worked hard as a team to decorate our table for the fete. At first, I thought we’re going to sell a lot of cakes. Sam and I wore the Cerebra shirt and Jacky, which is Samuel’s mum was wearing a Welsh t-shirt. Originally, the Cranberries cake went to the Bake-off competition but we didn’t win. In the end, we took part and we are all very happy.”

We’re very lucky to have fantastic fundraisers who are always willing to go the extra mile to raise funds and awareness for Cerebra.

If you would like to find out how you can support Cerebra by holding your own event like this, please contact our fundraising team on 01267 244222.

 

Night Waking and Building a Better Bedtime Routine

James

James

James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.

Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night.  This would result in his dad moving to sleep on a mattress to be able to get more sleep.  The parents were finding this a great strain, as they did not have an evening together or a good night sleep.

Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.

The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs.  Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern.  A couple of months later, James’  mum replied with the following:

“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room.  We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.

Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down?  If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”

The parents persevered with the technique over the next few weeks, and also introduced one of their own:

“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime.  We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room.  We leave the CD on very quietly through the night and he now stays in his bed.  This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”

According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night.  This can help the child fall asleep again on their own.

James’s mum was grateful for the support through the process:

“There is so little help out there for sleeping difficulties so your service is so valuable!“

You can find out more information about our Sleep Service here.

Alex Braves Coastal Path Trek

Alex, Jess and Ezra training on the Coastal path

Alex, Jess and Ezra training on the Coastal path

Never one to shy away from a challenge, 71 year old Alex Elsaesser is preparing to tackle his biggest one yet – walking the entire 60 mile stretch of the Ceredigion Coastal path, all in 24 hours.

Alex has worked for Cerebra for 16 years and this isn’t the first time that Alex has taken part in an event to raise money for us. He ran the London 10k for a number of years, even taking part with his daughter Alissa who is also a volunteer for Cerebra.

This is to be Alex’s last challenge for Cerebra and he wanted to make it a memorable one!

Alex said: “We have been training for months. I even joined Weight Watchers because I was overweight and have lost 18 lbs. During my time at Cerebra, we have helped so many disabled children and their families.”

Jess Elsaesser and Ezra Mathias will be joining Alex for the trek. Ezra is raising money for Cerebra and the British Heart Foundation. Jess is raising money to purchase sensory toys for the Children’s Ward at the Royal Gwent where she is a staff nurse.

All three are committed to do the walk on July 8th. They will be helped by their training coach, Julie Pritchard who will be bringing food, fresh clothes, drink and moral support for this difficult challenge.

If you would like to sponsor Alex, Jess and Ezra, you can do so through their Just Giving page.

Life online for young people with SEN

Dawn Cavanagh

Dawn Cavanagh

Dawn Cavanagh, whose teenage son has autism, considers the benefits and challenges of life online for young people with special educational needs (SEN) and discusses ways to teach young people with SEN to navigate the internet safely, while making the most of what the internet has to offer.

Like it or not we are living in a digital age. Today, you can get online anywhere, at any time, and can communicate with almost anyone in the world. Ensuring that young people make the most of the exciting opportunities the internet has to offer, while also being helped to stay safe online is high on the public agenda. But what if your child has special educational needs (SEN)? What then?

Children with SEN include those with emotional, social or behavioural difficulties, learning difficulties, and other complex needs. There are many ways in which young people with SEN are vulnerable to danger on the internet. Children with SEN (and especially those with a diagnosis of autism) may make literal interpretations of content online, which may affect how they respond; they may not understand the concept of friendship, which may lead to them being more trusting than their peers. They may also struggle to make judgements about what information is safe to share or not recognise that they are being bullied. Furthermore, they may not appreciate how their own behaviour may be construed by someone else as bullying.

However, it is not all doom and gloom. There are benefits to using the internet for young people with SEN. The internet can be used in creative and fun ways to support learning and social interaction. For my teenage autistic son, the interactive online gaming phenomenon Minecraft allows players to build and create textured cubes in a 3D virtual world. Minecraft enables my son to have complete control of his environment and to engage in his special interests: time travel and Doctor Who. There is nothing he loves more than jumping in and out of his tardis, exploring new dimensions. Minecraft has helped to nurture his conceptual thinking, so that he has become more adept at problem solving. For example, he has worked out how to operate the tardis without any instruction. Whilst my son gets confused and distressed by others’ attempts to join him in his gaming, some young people with autism benefit from Minecraft’s multiplayer mode, which can help develop their communication and social skills, as well as enhance their creativity.

AutCraft (Duncan, 2015) is a Minecraft server specifically for autistic children and their families. The environment has been modified so that players can roam free from the dangers frequently encountered in the game’s regular modes. While all this is good, the downside of Minecraft is that like so many video games it has the potential to become addictive. This is especially concerning for children with autism who may have tendencies towards obsessive compulsive type behaviour. Excessive screen time is a recurring concern for many parents, especially in terms of time spent away from family, as well as lack of exercise.

Young people with SEN are at greater risk of cyberbullying, online grooming and exposure to inappropriate content, yet less research has been conducted in this area compared with the mainstream population. Of the body of research that currently exists, the risks for a young person with SEN appear to be more profound due to increased vulnerability and social naivety. As a group they are more likely to be lacking in sexual knowledge, have difficulties with compliance or expressing consent, as well as recognising abusive situations. Furthermore, they are less likely to have opportunities to have romantic or sexual partners, so may seek the company of strangers online and offline when lonely (Normand and Sallafranque-St-Louis, 2016).

Research has revealed that many young people with SEN have experienced cyberbullying and discriminatory behaviour such as disablist language or jokes about disability online. This can lead to considerable emotional and psychological distress. Research conducted in the Netherlands, looking at the effects of cyberbulling among students with intellectual (learning) and developmental disability, found that higher rates of cyberbullying are associated with lower levels of self-esteem and higher reported depressive feelings (Didden et al., 2009). Research undertaken by the Anti-Bullying Alliance (England and Wales) (2013) revealed that as well as having experienced cyberbullying and discriminatory behaviour many young people with SEN felt that they had not been taught how to use the internet, or to stay safe online. Moreover, some young people used the internet to create an anonymous persona to hide their disability or actively avoided the internet altogether.

A more recent study (Bannon, NcGlynn, McKenzie and Quayle, 2015) investigating the perception of online risks by young people with SEN (aged 13-18 years) in Scotland revealed that while many young people with SEN were aware of a range of risks online, and could discuss how to stay safe, not all were able to put appropriate safety strategies into practice. Some described befriending strangers on the internet. There were examples of intentional risk taking, perhaps due to peer pressure to perform. For others risk-taking in their online behaviour appeared to be linked with poor understanding of the implications of their actions and/or difficulties with inhibitory control.

There was much variation in supervision and monitoring of online behaviour, with some families putting no supervisory strategies in place, whilst others blocked access to certain content, checked history and/or placed limits on the amount of time the young person spent online. Interestingly, while some young people sought the advice of parents, and occasionally teachers, about managing online risk, many also took the opportunity to learn from peers, especially if they thought that disclosure to a family member was likely to result in removal of internet privileges. Further research is needed, perhaps including parents and teachers, in terms of how best to support young people with SEN to stay safe and strong online, whilst making the most of what the internet has to offer.

So, how do we teach young people with SEN to navigate the internet safely? The first thing is to recognise that life online presents young people with SEN with different challenges, and then to tailor strategies accordingly.  Cerebra (cited in Digital Parenting, 2016), the UK charity dedicated to improving the lives of children with neurological conditions, make the point that young people with learning difficulties can sometimes be more trusting of strangers than other young people. The Cerebra guide (cited in Digital Parenting, 2016) suggests encouraging the young person to use a pseudonym (a fictitious name) online and getting him or her to seek help from a trusted adult if anyone asks for personal information, such as their address or where they go to school. The young person might also benefit from joining an online community that has been specifically set up for people with learning difficulties.

Further suggestions for limiting risk online for children and young people with autism and learning disabilities is available in Cerebra’s guide: Learning Disabilities, Autism and Internet Safety, available on Cerebra’s website.

©Dawn Cavanagh 2017, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

­­­­­­­­­References

Anti-Bullying Alliance (2013) Cyberbullying and children and young people with SEN: the views of young people. Retrieved 13th February 2017. Available from https://www.anti-bullyingalliance.org.uk/sites/default/files/field/attachment/disabled-young-peoples-views-on-cyberbullying-report.pdf

Bannon, S., McGlynn, T., McKenzie, K. & Quayle, E (2015). The internet and young people with Additional Support Needs (ASN):  Risk and safety.  Retrieved 13th February, 2017. Available from http://www.sciencedirect.com/science/article/pii/S0747563215000321

Normand, C.L. & Sallafranque-St-Louis, F (2016). Cybervictimization of Young People with an Intellectual or Developmental Disability: Risks Specific to Sexual Solicitation. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/25871891

Didden, R., Scholte, R.H.J., Korzilius, H., Jan, M. H., Moor, D.E., Vermeulen, A., O’Reilly, M., Lang, R., & Lancioni, G.E (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/19466622

Digital Parenting (2016). Vodaphone UK. Retrieved 13th February, 2017. Available from http://www.vodafone.com/content/digital-parenting.html

Duncan, S (2015). Autcraft.  Retrieved February 13th, 2017. Available from http://www.autcraft.com/

Useful links:

Anti-Bullying Alliance: http://anti-bullyingalliance.org.uk/

Autcraft:  http://www.autcraft.com/

Digital Parenting website:  http://www.vodafone.com/content/digital-parenting.html

Digital Parenting magazine: http://www.vodafone.com/content/digital-parenting/learning-and-fun/digital-parenting-magazine.html

Special Friends (Free online community for people with learning disabilities, and their parents and carers): http://www.specialfriends.com/public/

Video Game Addiction Helpline: http://www.videogameaddiction.co.uk/gaming-addiction/minecraft.html

Join our team and be a Triathlon Superhero!

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends.

The event will take place in Dorney Lake, Windsor on 19th August and promises to be a fun filled day with the chance to meet and take part alongside Paralympian and celebrity team captains.

We’re thrilled to be a charity partner for the event and we’re looking for people to join us on Team Cerebra. There are lots of different ways to take part, the only requirement is that one person on your team (or you if you choose to fly solo!) must have a disability:

  • Team up – unite with disabled and non-disabled friends and family to share the fun
  • Grab a sidekick – tow a teamate in the water and push or pull them around the course
  • Fly solo – for those who want to take on all the triathlon stages by themselves.

There are also three different distances that you can choose from:

  • Sprint – 150m swim, 3k cycle, 1k run
  • Half – 400m swim, 10k cycle, 2.5k run
  • Full – 750m swim, 20k cycle, 5k run

Father and daughter team, Rob and Poppy, have already signed up and have been chosen to take part in a special celebrity race. They’ll be partnered with Olympian Chris Jones and will be competing against the likes of Hannah Cockcroft and comedian and talk show host Adam Hills.

You can find out lots more about the event on the Superhero Series website, but if you’d like a chat about the different options and how we can help you to take part please just get in touch with ceciliab@cerebra.org.uk.

We’ve got people on hand to help out with the running, cycling or swimming legs and may also be able to supply some equipment – including a specially designed boat.

We’d love you to join us and show off your superpower. So please get in touch – it’s going to be awesome!

 

 

New books in our library

In recent months the library has had less money to buy new books and it’s been hard to choose which books to buy out of all the new publications and suggestions from library members.

Here are our most recent new books. We’ve chosen ones on subjects we are asked for most frequently and we’ve received a few donated books too.

Books

  • L6700 Successful Social Stories for Young Children: growing up with social stories by Siobhan Timmins
    ISBN 9781785921124 2016
  • L6702 Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million by Vikky Turner
    ISBN 9781785032004 2016
  • L6698 The Out of Sync Child Grows Up: coping with sensory processing disorder in the adolescent and young adult years by Carol Stock Kranowitz
    ISBN 9780399176319 2016
    This is the latest book in the very popular series of the out of sync child books
  • L6699 Understanding Sensory Processing Disorders in Children: a guide for parents and professionals by Matt Mielnick
    ISBN 9781785927522 2017
  • L6671 Neurotribes: the legacy of autism and how to think smarter about people who think differently by Oliver Sacks
    ISBN 9781760113643 2015
    The Sunday Times Bestseller and winner of Samuel Johnson Prize for Non-fiction 2015
  • L6694 The Gentle Sleep Book: a guide for calm babies, toddlers and pre-schoolers by Sarah Ockwell-Smith
    ISBN 9780349405209 2015
  • L6685 More Than Words: helping parents promote communication and social skills in children with autism spectrum disorder by Fern Sussman
    This is an extra copy of a very popular title very kindly donated to us by a library member
  • L6708 Hope: celebrate your baby with Down Syndrome by Tania Khan
    Donated by the author
  • L6701 Special Educational Needs and Disability Discrimination in Schools: a legal handbook by Sarah Hannett et al, published by the Legal Action Group
    ISBN 9781098407764 2017

DVD

AV6691 Autism and Me by Rory Hoy
This is a very good dvd of a television documentary, explaining what it’s like to have autism, that is often recommended to people after their child has been diagnosed.

Children’s Books – ages 5 to 8+

  • C0266 Autism Superheroes by Johanna Manikiza, published by ASD Info in Wales
    Non-Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0267 Autism Superheroes Comic Strip by Johanna Manikiza published by ASD Info in Wales
    Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0270 Emily’s Sister by Michele Gianetti
    Fiction for the siblings of a child with dyspraxia and sensory processing disorder
  • C0269 My Book of Feelings by Tracey Ross
    Non-fiction explaining different feelings to children
  • C0268 When My Worries Get Too Big by Kari Dun Buron
    Non-fiction explaining anxiety and relaxation to children with developmental disabilities

If you are not already a member of the library fill in the form on our library page.

Sleep Seminar Gives Advice on Aromatherapy, Mindfulness and Massage

We recently held a Sleep Seminar in Leeds at the Mencap Centre. The theme of the day was supporting sleep through mindfulness, aromatherapy and massage.

Alongside a presentation from our own Sleep Practitioners was Lois Skilleter, from Earthereal of Yorkshire therapies. Lois gave a great presentation on each topic and everyone eagerly took part in the practical demonstrations of either hand massage or head, neck and shoulders in the afternoon, with the support of Lisa and Amanda, Lois’ students. This provided a wonderful relaxing and enjoyable end to the day for parents and professionals, whilst a special mention must be made to our Sleep Practitioner,  Laura MacDonald  who selflessly put herself forward to be Lois’ demonstration model!

We also had Phil Truby from Yorkshire Sport Foundation talking about how they support children and adults who have disabilities to access sport and activities, as well as the positive impact that has not only on their fitness but on improving their social networks and emotional wellbeing.

We had so many positive comments about the day, here are just a few:

‘After 10 years of living with a child with a sleep disorder, I feel that despite thinking we had tried everything, we learned new techniques.’

‘I suffer from ticks and verbal shouting and was terrible on the journey to the seminar. I soon calmed down with the welcoming environment, lovely staff and relaxation exercises. Even my husband, who initially thought it was nonsense, benefitted from the mindfulness exercises.’

‘It has given me the confidence to go and try these things at home.’

‘Lots of ideas that a frazzled, sleep deprived mum would not consider.’

‘Having been shown how to massage, this will be very useful. I will definitely be doing this with my son.’

We were very grateful to have the event sponsored by Irwin Mitchell, who also very kindly provided the lunch, which was absolutely fantastic and much appreciated by everyone who came.

A huge thank you also to the staff at the venue who went out of their way to help us and everyone who contributed to make the day such a success. There are definitely a few children who will benefit from receiving their parent’s new found skills!

You can download handouts from the day below:

Aromatheraphy and Massage Handout Mindfulness Handout

Brody, Me and Global Development Delay

Brody

Brody

Laura is mother to 5 year old Brody who, despite having lots of health issues, has no definitive diagnosis. Laura writes about their journey as a family in her blog Brody, Me and GDD. In this blog post, Laura explains their journey as a family.

“Our beautiful Brody entered the world just over 5 years ago. He passed all of his newborn tests and was a really content and happy baby. I was completely unaware of undiagnosed genetic conditions back then and the journey we were about to take together. He was, and still is, is a total joy (forgetting about when he has a tantrum of course!).

I began to notice that he wasn’t developing typically when he was a few months old. A classic case of mother’s intuition coupled with all of the baby and toddler classes I signed up to.

First there was Water Babies, where all of the other babies looked ahead when they were placed on their tummies and held underneath their chest in the water. Brody struggled to keep his head up at all. I’d go back to the changing room afterwards amazed at how all of the other mums would let their babies sit on the hard floor with a towel wrapped round them whilst they got dressed. Not scared of them falling back and hitting their heads at all – because they didn’t fall back.

Then there was Rhythm Time where all of the babies babbled and waved on queue. As the months went by they were able to perch on their mum’s knees with ease and understood to go and get their “rhythm sticks” out of the basket and when to put them back. I’d wedge Brody in-between my legs so that he was well supported and the woman who ran the class would kindly pass me our rhythm sticks. More often than not, I’d swallow the lump in my throat as another child took pleasure in taking ours back to the basket afterwards.

Next up was Toddler Sensory. The last class I put myself through. Where all of the toddlers were able to walk along the obstacles, understand the basic games, attempt to sing along to songs and eat the snacks without gagging or throwing up.

Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise.

He was “just slow” and “a typical boy”.

And the constant vomit that we experienced on a daily basis and inability to eat solid food was just reflux. Food aversion and delayed speech? Apparently also refluxes fault.

Then just before Brody turned two, he had a cluster of seizures and was hospitalised for a few days. It was a pivotal moment for us as a family. The health professionals began to take notice and I was told he had Global Development Delay. We had no answers, but a list of new people in our lives – paediatricians, an OT and a physiotherapist, to name but a few.

Lots of parents have similar journeys and tests go on to reveal a diagnosis. However, our journey has been one that’s lacked answers. What we do know now, a few years on, is that Brody has a learning disability, autism and epilepsy. He also has low muscle tone and hypermobile joints. But Doctors can’t find a unifying diagnosis to explain his disabilities and symptoms so he remains primarily undiagnosed, despite lots of tests.

We are part of a genetics study called the DDD (Deciphering Development Disorders) study, but this may not bring us answers and can take years to get results. I’m already knocking on genetics door to get us on to the 100,000 Genomes project, but of course, it’s never that straight forward. We’re on a waiting list and apparently it’s “amber”.

We are living in limbo.

But I know we’re not alone thanks to a charity called SWAN (Syndromes Without A Name) UK. Amazingly, it’s estimated that 6000 children are born every year in the UK without a diagnosis to explain their disabilities. And many of these children remain undiagnosed into adulthood.

We may never get a diagnosis.

That’s not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.

SWAN UK is the only dedicated support network for families of undiagnosed children in the UK and it’s so important to me that other families know that it exists.

The mum who is currently attending the baby and toddler classes, noticing gaps in her child’s development and the difference between them and their peers.

The mum who’s told everything is “just reflux”.

The mum who’s told that boys are “just lazy”.

The mum who is knocking on doors but not yet being heard.

The mum who’s just heard the words Global Development Delay in a white walled Doctors room, or a more honest “we don’t know”.

And the Dads too of course!

I want them to know as soon as possible that they’re not alone. I wish I’d known that sooner. It may not change the path that you’re on, but it will definitely help you on the journey.

To find out more about SWAN UK visit www.undiagnosed.org.uk or email joinus@undiagnosed.org.uk.

And if you want to follow our journey, you can find us at Brody, Me & GDD on WordPress, Facebook and Twitter“.

Don’t forget you can also give our freephone helpline a call on 0800 328 1159 if you need help or advice, or visit our website.