New books in the library

Check out the new books we have in our library.

If you are not already a member you can borrow books from us to help you support your child. It is all free of charge. To join, fill in the application form on the library page.

Autism

Why Does Chris Do That? By Tony Attwood 2003 edition (L6768)

book cover - ten things every child with autism wishes you knew

Ten Things Every Child with Autism Wishes You Knew 2012 edition (L6813)

Aspergers’

book cover - The girl with the curly hair puberty

The Girl with the Curly Hair Asperger’s Syndrome and Puberty by Alis Rowe (L6791)

book cover - The girl with the curly hair siblings

The Girl with the Curly Hair Asperger’s Syndrome: Helping Siblings by Alis Rowe (L6792)

Communication

book cover - eye can write

Eye Can Write: a memoir of a child’s silent soul emerging by Jonathan Bryan (L6772)

book cover - Integrated intensive interaction

Integrating Intensive Interaction: developing communication practice in services for children and adults with severe learning difficulties, PMLD and autism by Amandine Mouriere (L6794)

Education for Special Needs

book cover - very special maths

Very Special Maths: developing thinking and maths skills for pupils with severe or complex learning difficulties by Les Stoves (L6795)

book cover - don't send him in tomorrow

Don’t Send Him in Tomorrow: shining a light on the marginalised disenfranchised and forgotten children of today’s schools by Jarlath O’Brien (L6800)

Mental Health

book cover CBT toolbox

CBT Toolbox for Children & Adolescents by Lisa Weed Phifer (L6802)

book cover - Child and Adolescent Mental health

Child and Adolescent Mental Health for Front-line Professionals by Nisha Dogra 2018 edition (6801)

Children’s Books

book cover - dude I'm an aspie

Dude, I’m an Aspie Kid’s Edition by Matt Friedman – the kids edition explaining Aspergers in cartoons from the blogger Matt Friedman

book cover - Siblings AS through our eyes

Siblings: the autism spectrum through our eyes by Jane Johnson – children and adults talk about what its like to grow up with a brother or sister with autism

book cover - Songames sensory processing

Songames for Sensory Processing by Aubrey Lande – games to play along with music, CDs included

For a full list of our library books please take a look at our library catalogues.

Jan Pugh
Librarian
[email protected]

A helmet for Imogen

The team at our Innovation Centre are hard at work making a new riding hat for Imogen.

Imogen loves horse riding and is taking part in the qualifying round of the RDA dressage event. There’s only one problem: her helmet. In order to get it to fit the depth of her head (so it doesn’t fall over her eyes), it is really tight around her head. This leads to discomfort and pain when riding for long times.

The new helmet being developed by CIC and UWTSD has been made to measure by using high tech equipment to scan her head shape and then design the helmet around her. They’ve already made a prototype and have been to visit Imogen to try it out to see if it fits.

The final production unit is being manufactured this week, so we hope that Imogen will be riding safely and in maximum comfort very soon!

Have you got a problem our Innovation Centre can help with? Get in touch using our contact form.

School, bullying and mental health

School. Some of us fondly remember our days in school as ‘some of the best days of our lives’.

School is an important step in all children’s lives and is where most of us spend a significant amount of time throughout our childhood and adolescence. It is a place where we are taught academic skills which can help us achieve and pursue the careers we choose for ourselves later in life. It is also a place where we are encouraged to step outside of our social comfort zone and to socialise with other children and adults outside of our immediate family.

Whilst some people would agree their memories of school are positive, others will remember school as a daily challenge to conquer. The demands put on children when they go to school, whether that be academically or socially are significant. The pressures on students to achieve the highest grades seem to be evermore increasing and throughout life in school, children must continually negotiate their social environment to ‘fit in’ with their peers to make and sustain friendships.

Academic attainment and peer acceptance are both challenges that all children face during their time at school, however school can be a particularly demanding place for children with genomic disorders.

Genomic disorders, such as 22q11.2 deletion syndrome, are caused by changes in a person’s chromosome (their DNA). Genomic disorders are commonly associated with complex physical, developmental and psychiatric problems. Therefore, many children with these conditions present differently to their peers in physical appearance, social skills and their educational and mental health needs.

As such, children with these conditions may be perceived as different from the rest of their peers and may often become ‘easy targets’ of bullying. Additionally, some parents report that their child’s schools do not have the resources or expertise in their child’s condition to accommodate their child’s needs. An unsuitable school environment and bullying are both factors which can contribute to a child’s adverse experience of school.

Adverse experiences in childhood, including bullying, are significantly associated with poor mental health outcomes. Research has also shown that certain genomic disorders increases the risk of developing mental health problems, such as anxiety, Autism Spectrum Disorder, attention-deficit/hyperactivity disorder and psychosis.

However, because not all children diagnosed with these genomic conditions develop mental health conditions, it is believed that both environmental and genetic factors contribute to the increased risk of poor mental health in these children. Therefore, much about the environmental risk factors, including school experiences, that children with genomic conditions encounter remain to be explored in order to understand how mental health conditions develop in this group.

I have just started my PhD project at Cardiff University, in which I will be exploring school experiences of children diagnosed with certain rare genomic disorders to answer the question ‘do adverse school and bullying experiences of children with genomic disorders contribute to their increased risk of developing mental health problems?’

To answer this question, I will be exploring school and bullying experiences that children with genomic disorders encounter and then I will investigate if and how these experiences differ from the experiences of their peers. I will then look at the effect of these experiences on the mental health outcomes of children with genomic disorders.

To explore these areas, I would like to speak to children diagnosed with certain genomic conditions, as well as their parents and teachers to gather an understanding about their experiences of school. For this project to successfully address the areas of interest and concern of parents, I would like these conversations to explore topics and issues that children and parents feel it important to investigate.

Therefore, if you or your child has received a diagnosis of a rare genetic condition, and you have any thoughts about this research, comments for specific topics you think it would be important to investigate, or if you would simply like to share your child’s experiences of school, I would love to hear from you with your suggestions. Additionally, if you would like to get in contact to ask questions about the project, please do.

By understanding the risk factors associated with poor mental health outcomes in children with genomic disorders, we can inform intervention strategies to reduce these risks and ultimately improve children’s outcomes and quality of life.

Thank you for reading and I hope to hear from you!

Lowri

If you would like to get in contact with Lowri to hear about your experiences, please email [email protected].

(Some of the rare genetic conditions Lowri will be exploring for her PhD include: 1q21.1 deletion/duplication, 2p16.3 deletion (NRXN1), 3q29 deletion, 9q34.3 deletion (Kleefstra), 10q23 duplication, 15q11.2 deletion/duplication, 15q13.3 deletion/duplication, 16p11.2 deletion/duplication, 17q12 duplication, 22q11.2 deletion/duplication syndromes).

Accessing Public Services in Scotland Toolkit Workshop

mother and disabled daughter at an appointment

Scots law provides powerful rights to education and support from other services, but this alone isn’t enough. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials.

To help parent/carers in Scotland we produced the Accessing Public Services in Scotland Toolkit which is packed full of useful information and resources to give parents, carers and professionals the skills and knowledge they need to advocate for themselves.

We are very grateful to the RS Macdonald Charitable Trust who have awarded us a grant to fund our Accessing Public Services in Scotland Toolkit Workshops. Their generous support means that we can provide our workshops free of charge and therefore help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.

These free workshops are run by our trained facilitators who will help families get to grips with our toolkit by showing them how to adapt the solutions and templates to their own individual circumstances and so improve parent/carer’s knowledge and confidence to challenge the decisions made by public bodies about their child’s care. The workshops have also been accredited by the CPD Certification Service.

To date there have been 68 workshops delivered on the English/Welsh version of the toolkit and feedback includes:

‘The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs.’

‘Having had a bad experience my confidence had been knocked but knowing my son’s rights and how to productively move forward has inspired me. Thank you.’  

If you are a Scottish parent/carer forum or work for an organisation who support families in Scotland and are interested in hosting a free workshop then please get in touch with [email protected]