10 ways to help your partner if they have MS

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Julia Segal, author of The Trouble with Illness, has written an article for Open Door, the MS Trust Newsletter on ways to help your partner if they have MS.

Relationships are full of ups and downs – it’s a fact of life. But when your partner has a long-term health condition like MS, there may be some extra bumps in the road for you both to navigate. Here are a few ways you can support your loved one along the way.

Click here to read her article

Help children to understand adoption and the diversity of different families

diversityHelp children to understand adoption and the diversity of different families with this illustrated rhyming story by Shanni Collins.  The rhyme is taken from her new book, All You Need is Love, which celebrates families of all shapes and sizes and encourages inclusion and acceptance in a child’s relationships. Each page is dedicated to a different family, with stories exploring sexuality, adoption, fostering, disability, race, gender diversity and illness.

Download the rhyme

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How can we help children to understand Multiple Sclerosis?

Multiple SclerosisMeet Maria – a woman with Multiple Sclerosis (MS). Maria tells the story of her family holiday which was interrupted when she began to feel dizzy, exhausted and weak. She explains how this led to her diagnosis and describes what MS is, how it affects her daily life and what others can do to help. Her story is taken from Can I tell you about Multiple Sclerosis? and is an ideal introduction to MS for children aged 7 +, as well as older readers. It will help family, friends and carers to better understand and explain MS and is an excellent starting point for group discussions.

Click here to download the extract

Can I tell you about Multiple Sclerosis? is part of the Can I tell you about…? series which offers simple introductions to a range of limiting conditions and other issues that affect our lives. Friendly characters invite readers to learn about their experiences, the challenges they face and how they would like to be helped and supported. These books serve as excellent starting points for family and classroom discussions.

If you would like to read more articles like this and hear the latest news and offers on our books, why not join our mailing list? We can send information by email or post as you prefer, and please also tell us about your areas of interest so we can send the most relevant information. You can unsubscribe at any time.

An interview with Michael Brian Murphy, author of “NLD from the Inside Out”

9781849057141 JKP authors Judith and Carson Graves, authors of Parents Have the Power to Make Special Education Work, sat down with Michael Brian Murphy to discuss the new edition of NLD from the Inside Out. Offering invaluable advice for teenagers and young adults with Nonverbal Learning Disabilities (NLD), this book explains what NLD is, how to understand your NLD brain, and how to thrive socially and academically. The book also includes guidance for parents, teachers and therapists on the issues that people with NLD want them to know. NLD from the Inside Out is the only book to offer first-hand teen perspectives on NLD, combined with useful, practical advice.

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Special Educational Needs Catalogue 2016

Browse our latest collection of books and resources in Special Educational Needs.
For more information on any of these titles go to www.jkp.com

Specific Learning Difficulties: What Teachers Need to Know; an interview with author Diana Hudson

Specific Learning DifficultiesDiana Hudson is a tutor and mentor to students with Specific Learning Difficulties (SpLD), as well as a subject classroom teacher (biology) and learning support teacher and SENCO. She has a diagnosis of dyslexia, and is a parent to four children, three of whom have been diagnosed with SpLD. We talked to her about the inspiration for her book Specific Learning Difficulties – What Teachers Need to Know, and she shares her advice for teachers on how to support children with SpLD’s. 

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Your Role as Your Child’s Advocate

Judith Canty Graves and Carson Graves are co-authors of Parents Have the Power to Make Special Education Work: An Insider Guide, and are the parents of a son with learning disabilities who is about to graduate from college. They live in Massachusetts.

As the parent of a child with special needs, one of your most9781849059701 important jobs is to be an advocate for your child in the school setting. You are vital to the success of your child’s education. You cannot be a passive observer; you need to be involved.

Here are some reasons why:

You Are the Only Permanent Member of Your Child’s Team

You are the only permanent member of the Team that decides what services and accommodations go into your child’s Individualized Education Program (IEP). New people who do not know you or your child will join the Team each fall and leave it the following spring. Occasionally a Team member might stay on for more than one school year, but most do not.

Schools Think Short Term, You Think Long Term

You and the school see your child’s education from different perspectives. In a way, this is natural since school personnel are focused on the current school year. You, on the other hand, are looking ahead to when your child becomes an adult. These different timelines can result in a source of conflict as you may want services that will help your child acquire skills needed in later years, but the school may only want to provide services that will meet more immediate needs.

As an example, students today are not given much instruction in handwriting and instead are taught keyboarding. But functional handwriting has not disappeared from the adult world. Our adult children will still have to fill out job applications or medical forms legibly by hand. Most of us are aware of other basic skills that may not have an immediate application in the classroom but which we know our children will need in later life. We have to be patient but persistent advocates for teaching these skills.

Skills Not Learned in School Have a Lasting Effect

Take the role as your child’s advocate seriously, because eventually your child will leave the public school. If he or she does not receive an appropriate education, who will help your child in a post-high school setting to balance a checkbook or fill out a job application? Many children who do not receive an appropriate education will need to take remedial courses after high school to learn skills they missed when they were younger.

What Parents Can Do

To become a better advocate for your child’s education, we recommend the following:

  • Periodically study your child’s special education documents in chronological order to better understand the progression of your child’s education. Trends will become apparent as you study the details and analyze the data over time. You must do this since Team members are transient and they don’t see the “big picture” that you can see. This exercise will show you the areas where your child has made progress or areas where he or she hasn’t.
  • Compare your child’s goals from year to year. If some goals never change, that means that either the goals aren’t appropriate or that your child isn’t making effective progress. Also compare the service delivery grid for each goal. Are the frequency and duration of services adequate to achieve the goal? If you notice that services are being decreased and the goal hasn’t been accomplished, you will want to discuss this with your Team.
  • Keep a notebook in which you record the important details of conversations you have with school personnel. If there are any action items, make them the subject of a follow-up letter or email to that person. If there are any misunderstandings about what was agreed to, this will help correct them before too much time and too many opportunities have passed. This improves positive communication with the school.
  • Keep a parent journal of your observations of your child’s experience. Record details about progress or lack of progress, and be sure to date your entries. Write in this journal on a regular basis and review it periodically. Progress almost always happens gradually, and you will only begin to see it when reviewing entries from past weeks, months, or even years.
  • Review your child’s IEP progress reports as you receive them. Compare the reports with the IEP goals and make sure these progress reports reflect your own observations as recorded in your parent journal. If these reports do not accurately describe your own observations, be sure to question these reports in writing to your child’s special education liaison. This will document your concerns.
  • Realize that every year of your child’s education matters. Time is essential in special education. If there are too many delays getting services, your child may fall behind. Each new year builds on the skills learned the previous year. It is remarkable how quickly a school year can go by and how the academic demands intensify as students advance in the grades.

Being your child’s special education advocate is an additional job for you on top of all the other things you are already doing. But it can be one of the most rewarding jobs you will ever have. Giving your child an appropriate education is an essential foundation for a productive future.

Learn more strategies for success in the Graves’ book, Parents Have the Power to Make Special Education Work: An Insider Guide. You can also discover more resources and check out their blog at their website.

2015 Family Choice Award Winner

The Pocket Occupational Therapist for Families of Children With Special Needs won a 2015 Family Choice Award!

Pediatric occupational therapist, Cara Koscinski, MOT, OTR/L, is the author of The Pocket Occupational Therapist for Families of Children With Special Needs. She was just 17 years old when she decided on her life long career. After shadowing an occupational therapist (OT) at a high school career day, her mind was made up. “I decided that day that’s what I wanted to do,” said Cara.” In fact, I applied to a university OT program as a junior in high school and never looked back. I never considered any other career.”

Little did she know that her passion, first ignited as a teen, would serve her so well in both her professional and personal life. Cara practiced occupational therapy, primarily serving an adult population, for years. It wasn’t until she had her sons and they were diagnosed with autism and sensory processing disorder that she made the switch to pediatric OT. Her younger son has mitochondrial disease, a severe case of Eosinophilic Esophagitis and uses a feeding tube for nourishment. At times, he requires a wheelchair to get around.

Cara believes her experience as a special needs mom gives her unique empathy for her clients and their families. “When I give my clients a home activity, I have personally tried it and know it works,” said Cara. “I feel very blessed to have the chance to use my professional expertise to help my own boys.”

As the author of this book, Cara brings her expertise as a pediatric occupational therapist and mother of two special needs children to parents, caregivers, families, and educators in an easy-to-read, easy-to-follow format. “I hope my readers will use the book during many times. For example, this week their child may be having difficulty with washing hair…next week it may be handwriting. The book is designed so that families can pick up the book and find exactly the help that they need.”

“I was surprised and honored to receive the nomination. I’m quite proud of the book and hope that this award will help readers to learn about the benefits of occupational therapy.”

For more information about Cara, visit her website at www.PocketOT.com.

FASD: A life-long neurodevelopmental disability that needs to be SEEN

Liam Curran is a PhD INDI Social Sciences student at Concordia University, Montreal, Canada. He has over 25 years’ experience working with young people in residential homes, child and family social work and children’s disability services social work, and is also a member of the McGill University Centre for Research on Child and Families (CRCF), Montreal, Canada. In this post, he explains the biggest obstacle for many children with FASDs and those supporting them – having their disability acknowledged so they can access much needed support, and suggests how we can improve diagnosis and support for people with FASD.
You can find out more about FASD, how it affects individuals, how it can be identified, and how best to support those with FASD in Liam’s co-authored book, 
Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals.

A life-long neurodevelopmental disability that needs to be SEEN

It has long been established that Fetal Alcohol Spectrum Disorders (FASDs) have a significant impact on all aspects of child welfare provision. Perhaps one of the most recognised publications of the modern times was developed on the evidence of eight children suffering from ‘failure to thrive’ in the Washington Child Welfare system, who were taken by social workers to the clinic of paediatricians, Dr David Jones and Dr Ken Smith. The rest is well known thanks to the paper written by Smith & Jones which became a seminal moment in society’s understanding of fetal alcohol, launching a robust level of research and public interest around the world.

Understanding Fetal Alcohol Spectrum Disorder coverThere is still a compelling need for child protection and welfare services to recognise the burden and impact of FASD on the services they provide. Recognition can aide the prevention of this disability, when allied health personnel become champions of change by imparting the ‘no safe level of alcohol consumption in pregnancy’. When responding to this ‘compelling need’, it is imperative that we consider our current principles surrounding a child’s security and overall development. In intervening for cases of health-related or educational neglect, it is also important to consider the neurodevelopmental factors associated with FASD. As stated in the opening paragraph, the eight children taken to the Washington clinic in the early 70’s were initially labelled with a ‘failure to thrive’; neglect and FASD can be finely intertwined, and require astute skills for Social Work personnel to differentiate.

Perhaps intervention by social workers is required when the caregiver cannot control/manage the behaviour of the young person in their care. FASD has long been seen as a significant concern in the area of a child’s development; problems identified in these children include immaturity leading to behavioural, social and academic challenges when set against the normal developmental milestones of developmental expectations. Poor self-regulation and sensory integration is equally well acknowledged within this cohort of children and such developmental deviation and subtle abnormality can have a significant impact on how the child manages the day to day expectations within a regulated society. Sadly, these children commonly present in child welfare intake systems, but their neurodevelopmental/neurocognitive disability is rarely seen and acted upon. Both neglect and behavioural problems are usually among the two highest categories of concern referred to state systems of child welfare and protection, and it’s within these two categories that FASD is most common.

It is also important to acknowledge the cumulative effect of yearly estimates of FASD births and how this impacts on child welfare services. In the UK, the yearly estimates of FASD births is set at 7,000. As child welfare services are delivered for children age 0-18, the cumulative number of births would be 126,000 across this age span of childcare provision. With a large body of evidence pointing to 50-60% of children born with an FASD condition entering the child welfare services, there can be no argument that FASD is having a disastrous but largely unseen impact on the service. Equally, what research has repeatedly shown and demonstrated is that the prevalence rates of FASDs lands on both our fostering and adoption communities. This in turn will lead to a fiscal burden carried by the child care providers of such services, demonstrated again in a large body of research findings.

Professional acceptance of FASDs’ neurodevelopmental and neurobehavioral presentation is vital to providing the support needed to these children and caregivers. The range of psychosocial interventions that have a proven success rate with these children are required to be common place in social work education modules of child & family teachings. Equally, these skills need to be honed in competency based education provided by employer organisations as part of service development goals.

How can we improve the trajectory and prospects of children suffering prenatal alcohol exposure?

  • National policy advisors need to implement FASD as a recognised disability within disability legalization and policy developments.
  • Currently available early intervention specialist services need to have the skills and training to Identify, Screen & Refer children for clinical assessment
  • Improve the service accessibility of individuals and their caregivers in accessing state services of supports.
  • FASD competency education should become mandatory in state services of professional development protocols.
  • Link current state education strategies on alcohol harm should be altered to firmly include the prevention and understanding of FASD within society.
  • The Social Work profession needs to reclaim, and become a stronger advocate for, the psychosocial needs of both the individuals and caregivers of those living with this disability.

There is a pressing need for this unseen disability to be recognized and acted upon in all aspects of child welfare interventions. Failure to do so is casting these children into a range of secondary disabilities, where they struggle in life with homelessness, mental illness, addiction and clashes with the criminal justice systems.  How can this be achieved?

In order for social work professionals to become stronger advocates, they need to be supported in their skill development on a number of levels.

  • The disability of FASD needs to be fully taught within social work undergraduate education by the university bodies responsible for developing future social workers.
  • All child welfare and child protection service providers who are responsible for professional development of their workforces to commission professional FASD education modules from providers qualified to deliver such education
  • Equally for Social Work to function effectively in responding to FASD, they need FASD as a health disorder to be understood by allied health professionals, policy makers and the public in general.

You can find out more about Liam’s book Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals, read reviews and order your copy here.

What it means to be a transitions social worker

Jill Hughes and Natalie Lackenby are part of a Young Adults Team in Worcestershire that has a dedicated focus on supporting young people with disabilities through the transition to adulthood. As the authors of Achieving Successful Transitions for Young People with Disabilities, Jill and Natalie briefly describe their experiences as transition social workers from their unique point of view.

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Transitions Social Work

We are part of a Young Adults Team in Worcestershire that has a dedicated focus on supporting young people with disabilities through the transition to adulthood. We are fortunate to work as a team that has a co-ordinated approach to transition, but recognise that not all workers are so fortunate and some have to navigate these complex issues alone. Having been in this position previously, we know how lonely and bewildering transition can be and we looked for a comprehensive text that would support our practice in this area without success!

Transitions has traditionally been a service area which has been overlooked and under-resourced, and often seen as an add-on to the work of adult teams.  However, in these times of financial austerity there is a growing realisation that resourcing these complex pieces of work in a timely and efficient manner is actually cost effective.

The implementation of the Care Act 2014 has placed a framework of duties on Local Authorities for social work with young people in transition. This has brought the whole area of transitions into focus with clear roles and responsibilities.

In Achieving Successful Transitions for Young People with Disabilities we included practical case studies so as to highlight some of the challenges faced by workers, and offer suggestions of how to overcome such challenges. The importance of empowering young people to be more informed about the transitions process is essential, but equally we need to ensure that practitioners are equipped with the knowledge to successfully support young people to navigate the transition process and make their own decisions about their future.

Natalie’s Background

Social work is generally considered to be a tough job and as a newly qualified social worker in a learning disabilities team I felt ready for the challenge ahead. When I applied for the job, I remember thinking what a vital role this was and I was sure that there would be a wealth of information and resources to draw on. I was fortunate to be in a supportive and friendly team when I started my career almost 12 years ago, but what I soon found to be the most challenging part of my job surprised me somewhat.

I was different; I was the transition social worker. Unlike the other social workers in the team, my role focused on supporting young people from 14+ to think about adulthood and support them through a transition from children’s to adult services. It became evident that the issues faced by the young people I worked with differed from those faced by clients other team members worked with. Similarly, the challenges faced by my colleagues in their roles, were significantly different to the challenges I experienced in mine. I looked for guidance and found lots of information aimed at parents and carers but limited practical information for professionals about navigating the transition process.

I often found myself as a lone voice in a large school review trying to explain a number of systems, processes and policies to anxious parents and young people. In fact it was pretty lonely as a transitions worker.

My colleagues remained supportive, offering and advice and information where they could, however, I always felt that my role was unique, combining traditional social work, with a strategic approach that identified a need for future service provision. In 2012, the council recognised the need to have a strategic approach to transition and developed a county wide transition team to which I was transferred, the Young Adults Team.

Jill’s Background

I moved to the Young Adults Team in 2012, as it was being set up.  My background was primarily older people, but I had also worked with younger people with a physical disability. Prior to social work training I had also worked as an advocate and support worker to adults and children with a learning disability.

I was very apprehensive initially about a move into team where I was unfamiliar with the specific work, in an area that is often complex, with the added complication of it being a brand new team.  When looking for textbooks or practice guidance to support me with the move, I was surprised that there was nothing available to guide practitioners, and this left me further in the dark about what transitions actually meant, both to the workers and the young people experiencing it.

As a newly set up team, we all grappled with the challenge of transitions, but luckily we were in the position of learning from each other, and sharing experiences both positive and negative.

Jill Hughes is an Advanced Social Work Professional in the Young Adults Team in Worcestershire, UK, which manages transitions for young people with disabilities and complex health needs between Children’s Services and Adult Services. She has led on Practice Development Groups, facilitated reflective and interactive supervision in both one-to-one and group sessions, and she has a particular interest in personalisation and person-centred planning. Jill also provides sessional lectures to students completing access courses, BA and MA studies at the University of Worcester and Heart of Worcestershire College.

Natalie Lackenby is a social worker in the Young Adults Team in Worcestershire, supporting young people with physical and learning disabilities through the transition to adulthood. Natalie has worked as a Transitions Social worker since 2003, and prior to joining the Young Adults Team, she worked as part of the community learning disability team. Natalie has a BA in vulnerable adults and community care, and she has given lectures around learning disability, legislation and policy and the transitions process to undergraduate and postgraduate students at the University of Worcester and Heart of Worcestershire College.

To learn more about Achieving Successful Transitions for Young People with Disabilities click here.