Diagnosis delay and disabled children

At Cerebra we have identified that a delay in getting a diagnosis of your child’s condition in the UK can be a problem and that these delays can impact on the well-being of the child and/or his or her family. We’d like to find out more about the experiences of families in gaining a diagnosis for their child or children and we would be grateful if you could help us by completing a short survey. The results of this survey will be used to inform our work and enable us to better support families in the future.

Who can participate?

We are looking for parents and carers of children with a neurological condition who have, or who are waiting for, a diagnosis of their child’s condition. This survey relates to diagnosis and delay in the UK only. Neurological conditions include for example: developmental disabilities; learning disabilities; genetic syndromes; Autism Spectrum Disorder; Cerebral Palsy; ADHD; and seizure disorders (this is not an exhaustive list). If you have one or more children with such disabilities we’d like to hear about your experiences.

If you require a paper copy of the survey, please email Beverley Hitchcock at beverleyh@cerebra.org.uk. (please specify if you require larger text).

How long will the survey take me to complete?

We estimate the survey will take around 2-5 minutes to complete.

Is the survey easy to complete?

Yes, all the questions are multiple choice or just require very short answers, you do not have to fill in the sections that ask for more information but if you have something to share we’d like to hear about it.

Will my information be confidential?

All data collected will remain anonymous and will be kept in a database that is only accessible to those working on the survey.

What are the possible benefits of taking part?

Your contribution to this research is invaluable. While you may not directly benefit by completing this survey we hope that the information you give us will help inform Cerebra’s work in this area and potentially help other parents and young people in future.

What do I do if I experience any problems with the survey or want to complain?

Please email Beverley Hitchcock at beverleyh@cerebra.org.uk.

Please click here to complete the survey.

Consultations – September 2015

Community Child Health Project
Call for evidence to inform the Community Child Health (CCH) Project, which aims to plan the workforce for local paediatric services, (Royal College of Paediatrics and Child Health. )
Closing date: 30 September 2015.

Restoring the Public Health Outcomes Framework
A consultation on whether any changes need to be made to what local authorities are expected to achieve in respect of their new health responsibilities, (Dept of Health.)
Closing date: 2 October 2015.

Proposed changes to tactile paving surfaces 
Seeking views on provisional changes to the guidance on the use of tactile paving surfaces. (Dept for Transport).
Closing date: 13 November 2015.

National Framework for Children and Young People’s Continuing Care
Online survey from the Department of Health requesting views on a revision of the National Framework for Children and Young People’s Continuing Care (relating to commissioning services for complex needs). The existing Framework, dating from 2010, can be found here.

Events – September 2015

EventsHenshaws Specialist College open evening, for families
30 September 2015
An opportunity for families of children with sight loss and other disabilities.  Booking essential, by contacting Henshaws.

Times Educational Supplement SEN Show
Business Design Centre, London. 9 and 10 October 2015.
Free exhibition and workshops, charges for seminars.

Autech 2015
1 October 2015, Manchester.
Conference about the application of robotics, biometrics, cloud-based technology and apps to people with autism and sensory issues. Charges are made for the conference, including concessions for parents / carers.

Kidz to Adultz Up North
19 November 2015, Manchester.
Free exhibition and seminars for parents, focusing on children and young adults with additional needs, (Disabled Living).

Dealing with Attitudes to Disability

Little boy in a wheelchair watching other childrenOne of the challenges of being a parent / carer of a child with additional needs is occasionally encountering other people’s awkward attitudes to disability. Why is this, and how can they be responded to?

How attitudes arise

Like most attributes, attitudes form through a complex of nature, nurture and circumstances; for example, if a child reminds a member of the public about someone or something in the past.

Another factor is of social expectations or cultural norms of behaviour, which are surprisingly varied.

Thirdly, many people have learned from someone else’s views or through advertisers or the media. (See Griffiths, M., Media and Disability, referenced below, for more details about the ways in which our attitudes are deliberately influenced.)

How attitudes come out in other people

The easiest attitude to deal with is probably that of simple acceptance, expressing itself in no exceptional reaction at all.  Where there is a reaction, some express admiration, how brave your child is, or how patient you are. Less positive ones include lack of understanding expressed in “looks” or more, or fear of something about the child such as unpredictable seizures, behaviours or even equipment. Some people appear wooden through not knowing what to say or how to act.

Anyone who is not at head-height with people talking is liable to be “talked over”.  Added to that, some have different expectations of those they can see are disabled. If the disability is not visible, some will not believe that the child is really disabled, and will put anything unexpected down to the adults or something that must have happened earlier. They may underestimate the role of neurological, sensory etc. factors. (A related misunderstanding is that if a condition does not have a diagnosis it must not be significant.)

Examples that families have seen include others moving away slightly; name-calling or other negative talk; a sense of discomfort or lack of knowledge; or even a suggestion that the disabled child should not have been taken somewhere, reminiscent of an institutional attitude that existed in the UK until past the middle of the 20th century (Brignell, 2010). Yet another attitude is that if a child’s needs are expensive, they are getting more than their fair share of resources (this sometimes goes with a disbelief in a disabled child’s ability to achieve).

Some reactions show empathy with what parents themselves may have experienced, not unlike aspects of grief, oscillating with hope that a condition is not real, and/or trying to relate it to events in the past with feelings of guilt or anger. Sometimes there is a conviction that there must be a solution, which is not necessarily true. For parents this is complicated by the fact that the help and expertise available usually have their limits, secondly there are many things they see in their child that others do not see, and thirdly there is a variety of views out there on just about any question. Those with love for, and/or a responsibility to a child must find ways of dealing with these feelings. Others might take the psychological and/or physical opportunity to distance themselves from difficult things.

More subtle is the idea that a child with additional needs will understand things the same as other children who look of similar age; ironically, an idea that relates to the drive for equality.  Related to that is the hope that if they are put in with a peer-group they will automatically blend with the group, whereas usually they will need some extra effort to help them do that.

Effects of other people’s attitudes

It takes a thick skin to be unaffected by other people’s attitudes. It is helpful to have a social circle of people who accept you and your child as you are, and a good measure of ordinariness. Many find it uncomfortable to feel always in the limelight, like a public figure who wears dark glasses to go and buy a sandwich.

Negative attitudes can affect a child’s self-esteem. They can also change lifestyle patterns, e.g. of going out and social life, limiting the extent and type of interaction with other families for parents as well. Children need reinforcement of positive attitudes, not only by parents / carers but also by schools, childcare, playschemes and other settings. The natural wariness of children (beyond the very young) towards differences can come out in difficult peer relationships unless they are actively countered.  One method is “extended contact” (Cameron and Rutland, [n.d.]).

Attitudes of others interact with circumstances like unpredictability (that is, missing events at short notice because of child’s health / situation, or calls from nurseries / schools / others needing support from parents, making things difficult for those in a workplace and/or without a car); worry about guests, e.g. friends of the children; tidying up all the time to suit visits from professionals, special arrangements or kit; having less space in the routine to balance life and share out responsibilities (or, if there is just one parent, a need to take everything on, possibly leading to tiredness, stress, disinclination to be sociable, or finding it hard to be organised).

Strategies

Children and parents / carers can use strategies to (a) strengthen their internal responses and (b) deal with other people and situations.

(a) Ways of strengthening inner resources include:

  • another person who could be a source of strength and support such as a friend or counsellor;
  • accepting challenges, just one day at a time if necessary;
  • at the same time, doing something about things. This would include research, enquiry and note-taking to manage things, because difficult-to-access bits of information with a lack of answers makes things feel more difficult, time-consuming and out of control;
  • an outlet, “time out”, a few minutes at a time or longer, to concentrate on something different, to deal with feelings, to take in something relaxing or to widen perspective; even just buying a cup of coffee somewhere after taking a child to school.  This is also part of keeping well, which makes it easier both to care for somebody else and to be resilient.

(b)Ways of dealing with other people and situations:

  • this comes naturally to some. Others are not “naturals” but can learn through training or study (e.g. Disability Action 2015), or by observing how “naturals” do it. In the long run, many parents find that things go more smoothly with a general positive or neutral approach, even if initially those do not feel natural;
  • try thinking out in advance what you might say or do if faced with any of the attitudes described above; not unlike using “social stories” to help children to think things out;
  • various other strategies have been tried, for example, “My six-year-old daughter has autism; my four-year-old daughter doesn’t. We encourage the younger one to talk about the older one’s condition openly… So if anybody tuts or comments etc, our youngest can tell them what’s going on”; or “Smile, nod, ignore” (Mumsnet, n.d.):  not fighting every battle, but only the essential ones; and trying to sidestep the opportunities that others have to cause tension, such as relatives who would do something a different way (Netbuddy 2014). Some sources recommend a “disability rights” approach, which might help to give children confidence if approached well;
  • some strategies to build children’s own resilience and self-confidence are suggested in the earlier article “Childhood changes: a way of thinking”;
  • lastly, one article says “We must be aware of the effect our responses have, but not stifled by self-consciousness” (Butler, 2005).

References

Brignell, Victoria (2010) When the disabled were segregated, (New Statesman magazine, 15 December).

Butler, Sarah (2005) Coping with other people’s reactions to your disabled child, (Talking Sense magazine).

Cameron L. and Rutland A. [n.d.] Changing children’s attitudes towards disabled peers through extended contact.  Canterbury, University of Kent.

Disability Action (2015) Self-Confidence and Assertiveness course.

Disability Matters, has a set of free e-learning modules on aspects of disability.  Among these, the “Environmental challenges matter” module includes dealing with attitudes of other people, and “Reflection matters” includes the reader’s own attitudes.

Griffiths M. (2011) Media and Disability. [Privately published].

Mumsnet [n.d.], This Is My Child campaign.

Netbuddy (merged with Scope’s blog, 2014).

Office for National Statistics (2014) Life opportunities survey, understanding disability wave two, part II.

Pfeiffer, D. et al. 2003. Attitudes toward disability in the helping professions. Disability Studies Quarterly 23(2) (Society for Disability Studies).

Smith, Patricia McGill (2010) You are not alone (originally NICHCY National Dissemination Center for Children with Disabilities).

Books on Asperger Syndrome in our Library

mum and daughter readingWe have many books in the library covering the autism spectrum, below are the most popular books on Asperger Syndrome.  If you would like to join the library, you can fill in the form on our library page.

Books for parents

  • L6593 Cognitive Behaviour Therapy to Hekp Young People with Aspergers by Tony Attwood
  • L6541 Hitchhiking Through Aspergers Syndrome by Lise Pyles
  • L6548 Multicoloured Mayhem: parenting the many shades of adolescents and children with Asperger Syndrome by Jacqui Jackson
  • L6634 The Complete Guide to Asperger Syndrome by Tony Attwood
  • L6524 Asperger Syndrome: a guide for parents and professionals by Tony Attwood
  • L6279 Parenting a Child with Asperger Syndrome: 200 tips and strategies by Brenda Boyd
  • L6309 Eating an Artichoke: a mother’s perspective on Asperger Syndrome by Echo Fling
  • L6426 Asperkids: an insider’s guide to loving understanding and teaching children with Asperger Syndrome by Jennifer Cook O’Toole
  • L6525 Raising Martians From Crash Landing to Leaving Home: how to help a child with Asperger Syndrome or high-functioning autism by Joshua Muggleton
  • L6512 and L6528 1001 Great Ideas for Teaching and Raising Children with autism or Aspergers by Ellen Notbohm
  • L6224 Create a Reward Plan for Your Child with Asperger Syndrome by John Smith
  • L6403 The Asperger Children’s Toolkit by Francis Musgrave
  • C0147 All Cats Have Aspergers by Kathy Hoopman
  • C0178 Inside Aspergers Looking Out by Kathy Hoopman

Books for schooling

  • L1677 Home Schooling the Child With Asperger Syndrome: real help for parents anywhere on any budget by Lise Pyles
  • L6144 Asperger Syndrome: what teachers need to know by Matt Winter
  • L6480 Spark: a mother’s story of nurturing genius by Kristine Barnett
  • L6462 Asperger Syndrome in the Inclusive Classroom: advice and strategies for teachers by Stacey Betts
  • L6513 How to Make School Make Sense: a parents’ guide to helping the child with Asperger Syndrome by Clare Lawrence
  • L6430 Autism and Flexischooling: a shared classroom and homeschooling approach by Clare Lawrence

DVDs

  • AV6310 Asperger Syndrome: a different mind by Simon Baron-Cohen
  • AV6398 An Animated Introduction to Asperger Syndrome by Biomation
  • AV6397 Living Along the Autism Spectrum

Books for kids

  • C0168 Kevin Thinks About Outer Space Confusing Expressions and the Perfectly Logical World of Asperger Syndrome by Gail Watts
  • C0176 & C0245 The Red Beast: controlling anger in children with Asperger Syndrome by K I Al-Ghani
  • C0219 What Is It Like to be Me? A book about a boy with Asperger Syndrome by Alenka Klemenc
  • C0211 The Disappointment Dragon: learning to cope with disappointment by K I Al-Ghani
  • C0212 The Panicosaurus: anxiety in children including those with Asperger Syndrome by K I Al-Ghani

Books for teens

  • C0084 and C0148 How to be Yourself in a World That’s Different: an Asperger Syndrome study guide for adolescents by Yuko Yoshia
  • C0093 and C0283 Can I Tell You About Asperger Syndrome by Jude Welton
  • C0206 and C0232 The Asperkids Secret Book of Social Rules: the handbook of not so obvious social guidelines for tweens and teens with Asperger Syndrome by Jennifer Cook O’Toole
  • L1614 Asperger Syndrome, Adolescent and Identity: looking beyond the label by Harvey Molloy
  • L1675 What Did You Say? What Did You Mean? An illustrated guide to understanding metaphors by Jude Welton
  • L6006 Living Your Best Life With Asperger Syndrome by Karra Barber
  • L6291 Freaks Geeks and Asperger Syndrome: a user guide to adolescence by Luke Jackson
  • L6349 Acting Antics: a theatrical approach to teaching social understanding to kids and teens with Asperger Syndrome by Cindy Schneider

Just girls

  • L6275 Aspergirls: empowering females with Asperger Syndrome by Rudy Simone
  • L6638 Aspergers and Girls by Tony Attwood

Books for brothers and sisters

  • C0179 My Family is Different: a workbook for children with a brother or sister who has autism or Asperger Syndrome by Carolyn Brock
  • C0217 Everybody is Different: a book for people who have a brother or sister with autism by Fiona Bleach
  • C0160 My Brother Has Autism by Jennifer Moore Mallinos
  • C0077 My Brother is Different by Louise Gorrod

Into adulthood

  • L6623 Natural Genius: the gifts of Asperger Syndrome by Susan Rubinyi
  • L6258 Developing Talents: careers for individuals with Asperger Syndrome and high-functioning autism by Temple Grandin
  • L6550 Aspergers Syndrome and Sexuality: from adolescence to adulthood by Isabelle Henault
  • L6380 Autism All-Stars: how we use our Autism or Asperger traits to shine in life by Josie Santomauro
  • L6547 Autism and Aspergers Syndrome: preparing for adulthood by Patricia Howlin

News – September 2015

A stack of newspapersHealthy Living Mentors
A Youth Health Movement has been formed with the aim of giving young people the tools to act as peer mentors in healthy living. Participation is through a selection of schools, alternatively through a number of centres offering qualifications in the field. (Public Health England and others).

Improving maternal and child nutrition
New NICE guidance: QS98. A general guide from pre-pregnancy to the pre-school stage.

Healthy Child Programme
From September 2015, parents of two year olds in England attending an early years setting should receive an integrated review of their child’s health and developmental progress, bringing together Healthy Child Programme reviews at age 2-2.5 and the Early Years Progress Check. This includes a tool called ASQ-3 which involves a questionnaire for parents. More details from Dept of Health.

Young People’s Mental Health and Wellbeing
The first version of “Local Transformation Plans for Children and Young People’s Mental Health and Wellbeing: Guidance and support for local areas” has been published for England, designed to work ultimately with the local authority’s “local offer” in each area, http://www.england.nhs.uk/wp-content/uploads/2015/07/local-transformation-plans-cyp-mh-guidance.pdf (NHS England). In Wales, a more informal look at access to neuropsychology and neuropsychiatry services is under way, which should include children’s services (more details from the Wales Neurological Alliance).

SEND Pathfinder Programme
The SEND pathfinder programme final report, published by the Dept for Education, includes information from families that took part in the trials for the new education, health and care system in England, what it is like and what they think of it.

SEN Statements and Education, Health and Care Plans
From 1 September 2015, the maximum timescale for local councils in England to transfer children from Statements of SEN to Education, Health and Care Plans is extended from 16 to 20 weeks. (Minister of State for Children and Families). Under 2015 No. 1619, The Children and Families Act 2014 (Transitional and Saving Provisions) (Amendment) (No. 2) Order 2015, any transfers where assessment notices have already been issued before 1 September 2015 must still be completed under the rules of the old timetable.

“It’s time to update classroom strategies for those with ASD”
Blog post written by an adult with autism in the light of recent research, coinciding with the beginning of school terms when educational plans such as IEPs for individual children are in formation, (Autism Awareness Center Inc.)

Legislation

2015 No. 1578 (W. 187), The Care and Support (Eligibility) (Wales) Regulations 2015
From 6 April 2016, sets out in detail the criteria that must be met if a person is to receive local authority funded support, including children with additional needs and carers.

2015 No. 1305 (W. 111), The Care and Support (Assessment) (Wales) Regulations 2015
Further regulations about social care assessments for children, adults and carers from 6 April 2016.

Qualifications Wales Act 2015
Establishes a new authority, Qualifications Wales, to recognise and approve awarding bodies and qualifications, and other administrative functions. Most of the Act is in force from 5 August 2015, other parts are not in force yet at the time if writing.

Mental Health (Scotland) Act 2015
New legislation covering people who may need to be detained in a mental health treatment setting. It includes parts that may affect children and their parents / carers. Some of it is in force already, some still to be put in place.

2015 No. 321, The Public Bodies (Joint Working) (Integration Joint Board Establishment) (Scotland) Amendment (No. 3) Order 2015
From 3 October 2015, creates Joint Boards in areas of Scotland for carrying out health and social care functions.

2015 No. 1662, The Social Fund Cold Weather Payments (General) Amendment (No.2) Regulations 2015
From 1 November, arrangements for postcode coverage from specific monitoring weather stations to trigger the payments in the coming winter.

2015 No. 1670 (C. 95), The Pensions Act 2014 (Commencement No. 6) Order 2015
From 12 October, extends to Northern Ireland the facility to top up National Insurance contributions for those reaching, or having reached pension age before 6 April 2016. This may apply to some carers. More information: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/376087/class3a-vol-conts.pdf and articles such as http://www.independent.co.uk/money/pensions/why-its-not-always-best-to-top-up-your-state-pension-9101635.html (The Independent).

2015 No. 1685, The Adoption Information and Intermediary Services (Pre-Commencement Adoptions) (Amendment) Regulations 2015
From 10 November 2015, regulations allowing adoption agencies in England to provide information to intermediary organisations in Wales where a person adopted before the end of December 2005 has requested knowledge of and contact with their birth relatives.

Resources – September 2015

ResourcesAutism Connect
Internet blog for anyone involved with autism to share thoughts and information. Also links to a free e-learning course. An iOS App version with many of the features (not the course) can be downloaded from iTunes by searching on “Autism Connect”. (Autism West Midlands).

University and epilepsy
A series of articles about preparing to go to university for young people with epilepsy, (Epilepsy Society).

Kern County Concussion Consortium
Practical information about concussion, mild brain injury and aftercare, with links to further resources.

Personal Emergency Response Service
Carers UK have a special offer on the wearable “Buddi” personal emergency service (for the cared-for person).

Improving school readiness: creating a better start for London
A document that would also show parents what is considered to make a child “school ready”.

Special Educational Needs
A collection of FAQs and short legal items about special educational needs, (Douglas Silas solicitors).

Universal Credit and Families: questions and answers
Government guide clarifying various questions asked by families that might be entitled to Universal Credit, (Dept for Work and Pensions).

Template letters
A new Template Review Letter and guidance notes, for parents wishing to ask the DWP to review a decision to stop DLA payments for a period when a child has been in hospital. These are Word documents, accessed by going to the Contact a Family website, www.cafamily.org.uk and entering the words ‘template review letter’ into the search box.

Catalogue of health-related fuel poverty schemes
Document listing local schemes to assist households that want energy efficiency measures (e.g. warm home schemes, Care & Repair). Many of these schemes include households with a disabled member, (Dept of Energy and Climate Change).

What to do before, during and after a flood
Includes information about dealing with insurance companies, and further contacts for emergencies (Environment Agency).

Moving into work
Employment and childcare rights for families in England, Northern Ireland, Scotland and Wales. Booklet from Contact a Family.

Care to Learn
Care to Learn is a UK programme of support including childcare costs for parents under the age of 20, to enable them to study, (Student Bursary Support Service).

Pregnancy and Mental Health
A set of resources about mothers’ mental wellbeing in pregnancy, (Tommy’s: your online midwife).

Allison’s Family Story

The Rose Family

The Rose Family

“There was definitely a blue line there! I could not believe it after the amount of negative pregnancy tests I had thrown away in the last 6 months. I was so happy – until on 11 o’clock on that very same day, I started to bleed. That was the start of a very difficult pregnancy.

At the 20 week scan the sonographer put the cold gel on my belly, and passed the probe over it…our baby was a boy. I smiled and felt a pang of love for my little bean. However, there was something else too. The sonographer said there were two ‘white markers’ – a calcium deposit in the heart and extra fluid around the brain. On their own they were nothing to worry about, but together were an indicator for Down’s Syndrome.

My heart sank to the bottom of my body, my emotions were everywhere. There was something wrong with our baby. I cried into my husband’s arms, my sister was there too. This was meant to be a happy day – finding out the sex of our baby, going to the shops and buying the relevant colour baby grow. Not this….

I was always worried and scared about disability – about something not being right with MY child, even before I fell pregnant. In particular I was worried about Downs Syndrome, even though there’s no history in our family. I suppose I worried because that’s the main syndrome which is screened for. It’s weird now to think about this, it’s almost like I had a sixth sense, and now how I think of disability in a total different way. It doesn’t scare me now. I just go with it…but more about that later.

After the longest three days of our lives, I had another scan. The consultant said my nuchal screening gave a very low chance of our baby having Downs and from what she could see it was highly unlikely. However, the only sure way to find out was to have amino testing. I did not want to do this because of the risk of miscarriage. We left the hospital crying again. But this time it was tears of happiness; there wasn’t anything wrong with our baby.

I bled on and off the whole way through, worried so much and felt really low and depressed. I had SPD, was in constant pain and couldn’t walk. It was almost as if the pregnancy was toxic to me. Plus Morgan (as we now called him) did not move much. I brought a fetal heart monitor just to reassure myself.

I somehow got through to 35 weeks and I started to bleed again. I went to the day assessment unit where they asked me “Do you know you are small for your dates?” I stayed in hospital that night, and had a specialist scan the next day. The placenta was failing and Morgan had stopped growing – the amniotic fluid was low and Morgan was not doing well, and was in a very awkward transverse breech position. He needed to be born.

Morgan with his brother Jayson and their mum

Morgan with his brother Jayson and their mum

The next day at 12.02 pm on 2nd October 2007, a 4lb 6oz Morgan Aaron Rose came into the world by C-section. He was all squished from where he had been stuck in my pelvis – no wonder they couldn’t get him out! It took 25 minutes to deliver him out which is a really long time for a C-section. His head was the shape of a banana as it had grown around his legs which were wrapped around it for a long time. He was a skinny little thing but he was beautiful with lots of dark hair and the most gorgeous button nose.

Morgan spent 3 weeks in the Neonatal Unit. He did not have a suck reflex, breast feeding was impossible; he could not maintain his body temperature and had a bit of jaundice. I managed to get him to bottle feed an ounce of expressed breast milk – it took him in an hour, but he did it!

After 3 weeks we finally took our baby boy home and we thought that we would be the end of our hospital visits. Everything was going to be fine now, or so we thought. Morgan had reflux. Michael sat up all night watching Morgan as he vomited all the time then I would take over during the day. We were so scared he was going to choke. There was vomit everywhere; constant washing and my poor baby was in pain. I spoke to the Health Visitor who said all babies are sick, it’s normal.

It made me feel like a neurotic first time mum but I knew this was not right. I finally went to the GP who referred us back to the hospital to see a reflux specialist. Morgan had some tests and was given meds and a special formula. It helped but was still hard to manage.

Morgan had torticollis (really stiff neck) and a type of plagiocephaly (misshaped head) because he was really squashed in my tummy and could not move. Our GP referred us to a physiotherapist. It was in that that treatment room that the realization of everything that had happened in the last year hit me. I broke down.

Sally, the physio, was great and she made a huge difference to me in those early days. It was Sally who referred us for Occupational Therapy and to a special needs play and development group. She recognized Morgan was different. At this point I can honestly say I did not really realise my baby was SO different from other babies. I had not done this before.

I met with some mums I went to an NCT group with, then it hit me like a ton of bricks – Morgan could not hold his head up or sit up like the other babies. He was still so tiny and in his little new-born baby grow still not really doing much. Their babies were so much more animated than Morgan. I stopped meeting those mums – it depressed me.

During the first year of Morgan’s life we had lots of hospital appointments for eyes, ears and reflux and a cranio facial specialist for his head shape. He had helmet fitted at 8 months old which helped mould it to a better shape – this aided his balance too. He wore his helmet for about 7-8 months, 24 hours a day.

He sat up for the first time when he was 1 year old, he walked at 19 months. By the time Morgan was 2 years old, he had had grommets put in, his adenoids removed and an operation to bring down his undescended testicles. He was very much delayed developmentally, non-verbal and much like a baby. I was thinking why?

I asked my GP for a referral to a Child Development Pediatrician. At the appointment I asked for genetic testing and a Brain MRI. The pediatrician agreed this was a good idea and referred us. We had an appointment with the geneticist who said that no particular syndrome came to her mind from examining and observing Morgan – she ordered the MRI and the bloods for the genetic testing would be taken while he was under GA.

All the genetic tests came back normal. However his brain MRI showed ‘significant changes’ – he had a lack of white brain matter and also an issue with grey matter. The radiologist writing the report put this down to infection or something that had happened in the womb given the pregnancy history. So that was it – it was a one off, something had happened in pregnancy which had caused Morgan’s brain to develop abnormally. This is why he had his problems, or that was what I was told and I accepted that. At least I had an answer.

Morgan had Portage (play therapy at home) and went to a specialist nursery at the age of 2 years and 4 months. This is where he came into his own, and so did Michael and I. Meeting other parents and families with children with disabilities and special needs was what gave us strength and a sense of belonging – It was a truly wonderful place.
By the time Morgan was 4 he started a special school – he loves his school and is doing fantastically. Morgan is non-verbal but has his own language and sound. He uses limited Makaton signs, loves singing and dancing and anything to do with music. Morgan is now 5 years old, developmentally he is about 12-18 months.

We decided we wanted to have another baby, a brother or sister for Morgan. I became pregnant again and our new baby was due in February 2011. I was monitored really closely, lots of extra scans and appointments, and I was constantly worried that something would go wrong. I requested a planned C-section, as I didn’t want any surprises, I kept worrying about something happening at the birth – I already had one child with special needs.

The Rose Family

The Rose Family

Jayson arrived 4 weeks early after my waters broke and I had to have an emergency C-section. He was stuck and they had to use forceps to get him out of the incision. He was all bruised and looked nothing like his big brother. He breast fed straight away and I thought “this is what it feels like to have a ‘normal’ baby”. Jayson also developed reflux and when Jayson was about 3 months old, my instinct told me all was not well. I just knew. I contacted Morgan’s Pediatrician and asked her to see Jayson.

She agreed. Jayson was very floppy, he was developmentally delayed and she could see why I was concerned. She ordered an MRI and the results took a few weeks to come back. The Pediatrician rang me to say that the results weren’t normal, that Jayson had a striking lack of white brain matter etc. etc. etc.…. It was happening again. In my heart I knew. But to hear her saying it threw me. I was in shock and I started to cry.

That was in January 2012. We saw the geneticist who explained that they had been convinced that Morgan’s problems were a one off but that now Jayson was affected in the same way. Both boys have the brain injury Periventricular Leukomalcia (PVL) they also have other brain abnormalities. The cause is a genetic one that they both share, but so rare current science cannot identify the cause so they were diagnosed with ‘a syndrome’. The geneticist even presented my boys at a regional conference to see if any other professional had an idea of what gene could be responsible for their issues.

A year after receiving Jayson’s MRI brain scan results, he was diagnosed with Spastic Dipliegia Cerebral Palsy – although this is not his definitive diagnosis, more like a symptom as the PVL has caused the CP. A genetic cause is thought to be responsible for both boys having a predisposition to white matter damage. It’s mind boggling really. Two boys with a ‘Syndrome Without A Name’ swans as we like to call them!

Morgan is now 7, developmentally he is about 2-3 years old. Essentially he’s non verbal, but he tries really hard to talk and is very vocal! He finally said ‘mummy’ last year! He has ADHD and attends a special school which is wonderful, he adores school.

Jayson is 4 and is a wheelchair user. He gets around at home by bunny hopping on his knees and he needs a lot of specialist equipment. He needs medication to help relax his tight muscles and has continuous bowel issues and reflux. Jayson is developmentally around 6-12 months, also non verbal and much quieter than his brother. He goes to a different special school to Morgan but it is located right next door!

So that’s it in a nutshell, there are bits in-between of course, but I would need to write a book to fit it all in!
I focus on doing everything I possibly can to make my boys lives enriched and fulfilling, to keep them happy with lots of positive experiences. Of course I have days where I feel down and not so positive, on those days I turn to my husband Michael, my family and friends I’ve made through the boys special schools and through online special needs forums – they, more than anyone else, just get it. We hope one day we may get a diagnosis and we are part of the deciphering developmental delay study and the 100,000 genome project.

If I could give any parent who has a child with a brain abnormality any advice, it would be to be pro-active, try to remain positive and think of the here and now – not too far into the future – because we don’t have a crystal ball. But today is what we make it”.

Allison Rose

Innovation Centre work on new surf products

The surf access vehicle

The surf access vehicle

Surf access vehicle: SAV

One of the new products being pioneered by CIC this summer has been the new Surf Access Vehicle (SAV).

Being developed in conjunction with Surf Tonic, a West Wales based surf school which specialises in surfing for people with various conditions, the SAV is aimed at transporting people from the car park to the water’s edge, and then into the water to aid transferral onto a surfboard. The cool design was created in partnership with a student who did a short internship with CIC called Ben Hammonds. The concept is designed such that a person of any size, any ability and condition, can sit in the seat comfortably and with dignity, be transported across rough and sandy terrain and then plunge into the waves. At this point, the seat can lay flat, allowing the surfer to slide off the SAV and be transferred onto the board.

Surfing is well documented as a great treatment for many conditions. Being outdoors, the fresh air, the sound and the motion of the water all conspire to make us feel great, so the more people who get to experience this fun sport the better. And with the length of coastline we have in the UK we are spoilt for choice!

The SAV is nearly complete after a long summer of development, but we hope that it will be in service during September and due to its superior materials and construction should see many years of use. We look forward to updating you with stories of its success and some photos of the real thing in action!

Tandem seated surfboard

Another surfing product that CIC have been asked to assist with has been a tandem surfboard which has a seat on it. This enormous surfboard can be ridden by two people: an instructor, who will paddle, surf and control the board, and a surfer who will sit in the seat and experience all the fun and motion of the waves.

CIC surfers, Ross and Dan designed and developed the board in collaboration with Ben Clifford from Surfability in Swansea, and Roger Cooper surfboards in Cwmafan, near Port Talbot. The board measures 12 ft long, and 36 inches wide and has an adjustable bucket seat from a racing car. The seat was very kindly made and donated by Jamie McDonald from Techneat Tanks.

The board has been made for Kai,  a local Swansea surfer with Cerebral Palsy, but it is hoped that as many as 50 children will benefit from the board each year and with a life expectancy of 5 years, there will be many hours of great surfing to be done!

Do you have a childcare backup plan?

teacher and two childrenWhen you are ill or indisposed is not the ideal moment to start working out alternative arrangements for caring for a child.  Having a backup plan in place, with contacts to hand, is a source of peace of mind and an ultimately quicker way of dealing with a difficult situation.

Not all options are open to everyone, but these are some to consider:

1. Kinship carers

Friends or relatives or other families (“kinship carers”), for an emergency care arrangement, if they are available.  Under some circumstances they would need to register (there is a summary of the registration organisations at: www.childcare.co.uk/information/checking-childcarer-documents) or inform the local council.  More details: www.gov.uk/looking-after-someone-elses-child (government website) and www.devon.gov.uk/cypsfactsheet-disc6-childmindingbetweenfriends.pdf (Devon County Council).  Such arrangements can be reciprocal (you be my care backup and I will be yours) and can usually remain informal as long as the arrangement cannot be construed as a substitute for financial reward, which kinship carers cannot legally receive.  Grandparents who are helping with childcare may like to check out the advice of the Grandparents’ Association. Caution: some websites contain inaccurate information about kinship caring.

People temporarily looking after a child because a parent-carer is ill may qualify for Income Support (see page 7 the DWP’s Guide to Income Support).

2. Voluntary carers

These schemes sometimes require pre-registration, also can include nomination of particular backup carers of your choice, so again it is worth thinking about this option in advance.

There may a local carers’ group or centre, and/or a local Carers Emergency scheme that can put a plan in place so that the child / young person you care for will be looked after while you are indisposed. Contacts are known to the national carers’ organisations (below) as well as NHS 111, i.e. telephone 111 for England and Scotland / NHS Direct Wales, 0845 46 47. If the national organisations do not know of any, double-check with the local public library or, of course, word-of-mouth. The Carers Emergency schemes generally have a 24-hour hotline.

3. Local authority

Families who are assessed as needing it will be able to arrange more formal “replacement care” or “emergency planning” through social services or other services. More details about this: http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/breaks-for-carers-respite-care.aspx (NHS Choices. Also check the government website for your part of the UK). Direct Payments provide more flexibility in employing carers.

4. NHS

In the case of children who have an NHS continuing care package, it should be possible to arrange nursing or other provision, with or without a Personal Health Budget.

5. Privately paid carers

Searching on Internet for “Emergency childcare” or “Emergency home care” will find a number of independent last-minute booking facilities with paid carers.

Notes

If you are combining paid work with care, it may also be useful to check your parental rights at work: see Cerebra guides for parents,  as well as your rights in sickness (Citizens Advice).  Also worth checking, whether there is anything to help you in the small print of any insurance policies you hold.

The major national organisations for carers are:  Carers UK and Carers Trust (previously called the Princess Royal Trust).