Category Archives: Information and Advice

Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Book Review: Parenting your disabled child

Our librarian Jan reviews a new book you can borrow from our free postal lending library.

‘Parenting Your Disabled Child: the first three years’

by Margaret Barrett
ISBN 9781847094513
£9.99

If you have only just found out your baby is disabled or you know you are going to give birth to a disabled child, this is a lovely book written in a lovely gentle style that will guide you through the emotions you are likely to feel, suggest coping strategies and offer you suggestions for bringing out the best in your child.

I particularly liked the quotes from parents’ describing the emotions they felt on finding out their child had a disability. They will definitely make you feel you are not alone. The chapter on coping strategies will help you help yourself as a carer.

The largest section of the book looks at areas of child development in the early years from encouraging social development to practical issues like toilet training. It focuses on ways to provide your child with every opportunity for stimulation and interaction, so that you can make sure they have the best start in life.

To borrow this book and for more information about our library please email janetp@cerebra.org.uk.

An End to Sleepless Nights

Our Sleep Service gives support to families when their child is having sleep difficulties. Sleep Practitioner Catherine Stone recently helped a family experiencing sleepless nights and mum told us  how Catherine’s support had helped them.

“Thanks for helping us to get our 5 year old son back into a good sleeping pattern.

M has Tuberous Sclerosis with Epilepsy and Autism. He was always a great sleeper until his epilepsy medication stopped him sleeping. He began waking several times at night and wouldn’t go to bed. Catherine gave us advice and support and kept in touch until we had him sleeping peacefully again. Then we moved house and M began having the same problems again!

Catherine came to see us again with more advice and support and M is now thankfully sleeping well again from 8pm to 7am. What was helpful along with the advice and support was Catherine’s belief that our child could sleep well, that we didn’t have to accept the sleepless nights. Many parents think it is hopeless and accept it. But I can handle the challenging behaviour so much better if I’ve slept well and M needs to sleep too, his behaviour is better if he is well rested”.

Catherine explains “M’s difficulty settling and night waking was having a big impact on mum and dad and on family life. M’s problems re-occurred when the family moved house so we looked at trying to get M’s bedroom similar to his old one. We also developed a routine to gradually remove mum and dad out of the bedroom.”

If you would like some help from our Sleep Service you can find out more here.

Help with night waking

Mum Tammy was struggling to cope with her daughter’s night waking. Our Sleep Practitioner Claire Varey describes how she gave them some practical advice and support and Tammy explains the impact this has had for her family.

 

“I first had contact with Tammy back in July 2016. Tammy had completed one of our sleep questionnaires and a sleep diary which gave some basic information about her daughter’s sleep habits. I arranged telephone support for Tammy and we discussed the issues that her daughter, Amelia, who was 4 at the time, had with sleep.

Amelia has Autism and likes the things she likes, but it can be very difficult to get her to engage in any activities or interests if she doesn’t want to. There had been some progress, but Tammy was finding it difficult with the late nights, spending a long time settling Amelia and the continued night waking episodes. Amelia was also having day time naps and was quite reliant on her tablet.

We discussed how these things may be impacting on her and agreed some changes to their routine that may help with settling at night – and hopefully over time improve Amelia’s night waking. We identified that having a bath as part of Amelia’s bed time routine may be stimulating her and so I suggested moving it to earlier in the evening. I felt it would also help to introduce some calming activities, supper and massage before bed.

For Amelia’s bedroom we spoke about using the relaxing scent of lavender to help Amelia associate her bed with being calm and sleep. Also the introduction of a red light would help her understand that it was time for sleep and, if she should wake at night, the red light and the scent of lavender, would help her understand that it was still time for sleep.

The other important factor to look at was the day time nap. We spoke about trying to reduce the length and time Amelia slept – this was especially important as Amelia would be starting full time school within the next 6 months.

We keep in touch via text and although progress has been up and down, there has been an overall positive improvement. Amelia is getting more sleep, she has dropped her day time nap, is settling well and has a better quality of sleep. This is also having a positive effect on her mood and concentration”.

Tammy told us the impact the support Claire has given her has had on her and Amelia:

“From my first telephone conversation with Claire I felt hugely positive about the task that lay ahead. The ultimate goal was to gain more sleep for Amelia and ourselves but for now any step no matter how small would make a huge difference.  Understanding the basics of how sleep works was a massive eye opener. It was really interesting and helped answer some questions I didn’t really know I had until Claire explained sleep patterns to me.

At the end of our first phone call I was yawning my head off so knew I was onto something good.

With Claire’s help we managed to identify that a bath actually stimulates Amelia’s body and so has the reverse effect. Claire advised me to do something with Amelia to get rid of excessive energy for 10 minutes; to use lavender in the bath with some in her room, delta wave music and a red light in Amelia’s bedroom. I felt that the light and the music didn’t do very much but the lavender helped a lot. Very quickly I noticed the time it took Amelia to switch off went from between one to two hours to between 5 and 35 minutes.

When we first started our journey Amelia was having naps after school so Claire explained about not letting it go past an hour, which we didn’t always do especially if Amelia wasn’t right in herself. Since actively encouraging less naps Amelia’s body has naturally adjusted and she now has no naps in the day.

Claire is amazing she listens and is genuinely interested. She regularly checks how we are doing and even though we have never met she has been a fairy godmother for us. Claire is happy to go with what worked for us, never stressing that we shouldn’t be in bed with Amelia which we still are and allowing us to set our own goals.

In the past few weeks Amelia has started going to school until the end of the day and is now in bed between 8pm and 10pm. She still stirs in the night but isn’t awake as often as she was before.

Amelia seems to be learning more and I am sure a lot of this is down to her brain not being as tired”.

If you’d like some help from our Sleep Service you can find our more here.

The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
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“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.

Support for our Problem-Solving Toolkit Workshops

problem solving toolkitWe are very grateful to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation who have each awarded us a £5,000 grant to fund our Problem Solving Toolkit Workshops.

Their generous support means that we can 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.

Our Problem Solving Toolkit and Workshops are designed to help families access the services that their children need, and are entitled to. The Toolkit is a comprehensive, practical and easy to use guide, packed with useful advice, solutions and precedent letters. You can download the Toolkit here.

Problem Solving Toolkit Workshops

This year we have launched our Problem Solving Toolkit Workshops which use the information and resources in the Toolkit to give parents, carers and professionals the skills and knowledge they need to advocate for themselves. Each workshop lasts for 3-4 hours and includes a presentation, case studies for group work and a chance to discuss and share experiences. The workshops are free.

We’ve had some great feedback from parents and professionals who attended our initial workshop:

  • “A wonderful guide to help parents, thank you so much. It is a real maze and you have provided a crutch for parents to use”. (A parent)
  • “I will be recommending this resource to the families that I work with. It is wonderful”.  (A professional)

Thanks again to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation for their generous support.

Books in the library on growing up

books on growing upCheck out the books we have in our postal lending library on growing up.

Going through adolescence

  • How to be yourself in a world that’s different by Yuko Yoshida – C0148 & C0048
  • Freaks Geeks and Asperger Syndrome by Luke Jackson – L6291
  • Exploring Friendships Puberty and Relationships: a programme to help children and young people on the Autism Spectrum to cope with the challenges of adolescence by Kate Ripley – L6602
  • Parenting a Teen or Young Adult with Asperger Syndrome: 325 ideas insights tips and strategies by Brenda Boyd – L6650
  • Social Skills Training for Adolescents with General Moderate Learning Difficulties by Ursula Cornish – L1720
  • Adolescents on the Autism Spectrum by Chantal Sicile-Kira – L6133
  • Asperger Syndrome Adolescence and Identity: looking beyond the label by Harvey Molloy – L1614

Going through puberty

  • Taking Care of Myself: a hygiene puberty and personal curriculum for young people with Autism by Mary Wrobel – L6323 (this book covers both boys and girls)
  • How It Is: an image vocabulary for children about feelings, rights and safety, personal care and sexuality by the NSPCC – L5986
  • The Boys Guide to Growing Up: choices and changes during puberty by Terri Couwenhoven – L6483
  • What’s Happening to Ellie? A book about puberty for girls and young women with autism and related conditions by Kate Reynolds – C0248
  • Girl Talk: a survival guide to growing up by Caroline Plaisted – C0218
  • Teaching Children with Down Syndrome about their Bodies, Boundaries and Sexuality by Terri Couwenhoven – L6262
  • Sexuality and Severe Autism: a practical guide for parents caregivers and health educators by Kate Reynolds – L6505
  • Aspergers Syndrome and Sexuality: from adolescence through adulthood by Isabelle Henault – L6650

Transition to adult services

  • Personalisation in Practice: supporting young people with disabilities through the transition to adulthood by Suzie Franklin – L6536
  • Achieving Successful Transitions for Young People with Disabilities: a practical guide by Jill Hughes – L6655

To borrow books from the library please email the librarian Jan Pugh on janetp@cerebra.org.uk.

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

Research and Information Request Service

In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.

So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.

Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.

Parent Guide

As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.

Parent Research Requests

If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with georgiam@cerebra.org.uk for more information on this service.

Your requests help others

Whatever information you are looking for, the chances are that it will also be useful to other families.  We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.

We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.

If you would like more information about our new Research and Information Request Service, please get in touch with georgiam@cerebra.org.uk

Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.

Cameron Gets Around on His New Scooot Seat

Louise French recently got in touch with us after she saw a Scooot Seat in action and knew it would be beneficial for her son Cameron. She told us their story.

Cameron was my third baby. He was born a healthy little boy, brother to Harris and Alfie, he made my family complete.  At 5 weeks old he became ill and was admitted to hospital where unfortunately he suffered a cardiac arrest which resulted in lack of oxygen to his brain and this resulted in an acquired brain injury. He spent the next 6 months in hospital.

The brain injury has meant that Cameron can’t safely swallow so he has had numerous operations and is now fed through a peg in his tummy.  He cannot communicate and is unable to sit up unaided and cannot walk.  It has been a long and hard 3 years looking after Cameron and coming to terms with his disabilities.  Cameron has very challenging behaviours which we believe are mainly due to frustration.

Cameron gets very frustrated as any 3 year old. He wants to run about and play with his brothers and other children but due to his disabilities he cannot. We had no means of Cameron moving about the room to follow his brothers and to get from room to room.  When playing outside Cameron just had to sit in his wheelchair and watch the boys.

Christmas 2015 we went to our Portage Christmas party were we saw a little boy on a Scooot Seat and we thought that maybe that if we could maybe get one of these Cameron would be able to join in with others while building his posture and potentially helping him to sit independently. Our Portage worker went out of her way to get us one to borrow to see how Cameron went on. Unfortunately there was so much demand for the equipment we were only able to borrow for a couple of weeks which wasn’t long enough for Cameron to get used to it.  We therefore put an application to Cerebra for a grant to purchase a Scooot. We waited patiently and we eventually got a letter to say our grant was successful and the Scooot was on order!

The Scooot got delivered about a month ago and to say it has opened up so many opportunities for Cameron is an understatement!  He is now following us round the room and joining in with his brothers when playing.  He has even started to sit unaided since using the scoot which is a real achievement for Cameron.  Today we took the Scooot outside in the garden and we played football, Cameron was so excited it was absolutely brilliant.

All I can say to Cerebra is thank you because you have allowed Cameron the ability to join in with so many things and without your assistance we may never have got the Scooot.

Thank you Cerebra.

The Scooot Seat was originally designed by the team at the Cerebra Innovation Centre (CIC) and is now manufactured by Leckey.
Julie sent us this lovely video of Cameron enjoying his new Scooot Seat.