Guest blog from Michelle Rundle. Michelle is an occupational therapist who supports disabled children and their families. She has previously written a book for Scope with a parent called Haylee’s Friends and has now written a new book called My Brother is an Astronaut.
About this time last year, Haylee’s Friends was launched by Scope. It is a story to help explain what cerebral palsy is to a young child. There were several comments from various people who read it, that there ought to be a series of stories explaining different disabilities to children and many suggestions were made as to what the next book should be about. One of the suggestions was autism.
Autism is a condition that fascinates me and has for a long time. More specifically, it is understanding how children and young people with autism might experience the world and how that differs from most people that is particularly of interest. I am very aware that understanding this can be a key part of helping these children and their families manage and get through each day, but that it isn’t always an easy topic to get to grips with as adults. It is even more tricky then for siblings, peers, friends and classmates. So the idea for “My brother is an Astronaut” was born. Oddly enough, I knew what the title was going to be before I’d even written the opening sentence!
I know that there are lots of children – and adults! – in the world whose sensory experience and therefore understanding of the world is a little “different”. It isn’t the exclusive domain of people with autism, so autism isn’t mentioned in the story. People with ADHD, ADD can have difficulties in this area too, as well as some children who are a bit “quirky” and don’t fit into any particular category. This book is written for them and for those they spend their days with to try and help give an insight into their experience of the world. It was written with children aged 5-8 in mind, but could have relevance outside of that age range.
Condensing all of the possible sensory processing tendencies and differences into a short children’s story is not possible and I did not want to over simplify it either. So it is perhaps most useful as a starting place to recognising that there might be diffirences and realising that sometimes there is a reason why children in the classroom or at home do things that are a bit annoying or don’t seem to make sense. It won’t provide the answers, but it will hopefully get people thinking.
In writing it, I have included some of the tendencies and habits of a range of children that I have met and worked with in my job as a paediatric Occupational Therapist over the past 20 years. They and their families have taught me so much. I do wonder how many will recognise their child’s particular “quirk” when they read the book. I hope they do!
A guest blog from Emma, author of Haylee’s friends, a new story book for young disabled children.
About a year ago my daughter, Molly, became aware her left hand didn’t always do the things she wanted it to do. Sometimes she got quite cross with it when it was uncooperative. It has a habit of going off at an unhelpful angle which is awkward for her and gets in the way.
Molly’s frustration prompted me to look for some books to help explain in simple terms what cerebral palsy is. Unfortunately, there wasn’t anything that was child friendly or presented cerebral palsy in a positive way.
After some encouragement from friends, and of course motivated by Molly’s questions, I contacted Scope to see if they had any story books to help Molly understand. As our conversations went on I asked if they would help me write a book to answer these questions, they agreed.
I arranged to meet one of the Scope team at the Kidz up North exhibition 2012 to discuss our ideas. Whilst at the exhibition I bumped into Molly’s occupational therapist Michelle and we got chatting about what I was doing at the exhibition.
A couple of days later Michelle emailed me offering to write the book with us, and so the project started. Michelle had never written a children’s story before but it was on her “one day I would like to do” list, all she needed was some inspiration! After a few luxury hot chocolate meetings, the story started to take shape.
Michelle spoke with speech and language and physiotherapy colleagues to hear what they would like to have included in the story. She also met up with a family that she has been involved with for a number of years and asked both the parents and the older child with cerebral palsy, “if this book had been around when you/your child started school, what would you have wanted it to say?”
The answers were to provide the central theme of the story.
“Never say it is all going to be okay, because it isn’t. But if you do your exercises and wear your splints, it can make things a lot easier”. And “however hard it is and however much you don’t want to, always answer your child’s questions truthfully”.
Throughout the process of developing the story, Molly insisted on being part of it, giving us lots of inspirational ideas and letting us know if she didn’t like something. She vetoed some of the illustrations, like the original pictures of Lilly, the walker, which were met with a very disapproving face from Molly! She also gave us suggestions of what to include, like using her fork and knife and helping to name the characters. Most importantly, she wanted our family dog to be the model for Toby in the illustrations.
Now Haylee’s Friends is published Molly is our best advocate for it. She loves sharing it with anybody willing to sit down with her. Visitors to the family home this summer have all benefitted from Molly sharing “her” book with them and her school friends have commented that “it tells you the things that help Haylee” and “I like the bit when the lead gets tangled up.”
The story has really helped Molly to understand why her body behaves like it does and it has helped her to share this new understanding with the people she meets. Now we hope that Haylee’s Friends helps other children, their families and friends in the way it has helped Molly. Already it is making its way into primary schools in the Harrogate District, it has been shared at Portage training sessions and is appearing in Children’s Centres, Child Development Centres and libraries.
We are all so excited and we hope to have a celebration and launch somewhere local to where it was written and where the hot chocolate was drunk very soon.
Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.
I am a professional working in a safeguarding field, but more importantly, I am the mother of a child with multiple health and development issues. I have wanted to write about early intervention and the CAF (Common Assessment Framework) process for some time as I feel it is an invaluable but underused resource that produces great benefits to children and families.
CAF is a process to help children who have problems across a range of issues or difficulties that cannot be helped by one agency alone. As a parent, I found the process invaluable. I also saw lots of benefits to the professionals involved in my son’s care. However, the place where I saw the most impact was in my son himself and in the progress he made at a key point in his early life.
My son had his first CAF when he was three. He had speech delay, sporadic hearing difficulty, breathing problems, lack of progress with toilet training and some behaviour issues. We were doing what we could as parents and had already made use of community resources and self-help materials. My son was also receiving intervention from the speech department, on-going assessment from the audiology department and support with his toilet training from the Sure Start Children’s Centre where his childcare was provided.
Preparing our son for nursery
Our key hope was to ensure our son was prepared as well as possible for the start of state nursery. We didn’t want him to start at the school nursery incontinent, incomprehensible and with difficulties paying attention. This aim was starting to be difficult because of the number of agencies and services involved in my son’s care.
The range of problems and level of intervention meant that good communication and co-ordinated support were essential. It is exactly this type of situation that CAF was designed for. The CAF process allows for assessment across a range of areas. This holistic approach tends to represent a family’s perspective of a child’s strengths and support needs better. My son’s speech development was linked to his difficulties with attention etc. so it was helpful to look at all of the problems together. Having done this, there were then clear areas of involvement from particular professionals and departments.
The CAF process also collects information of everyone involved in one central place. This is helpful to everyone connected to the child. The process also allows the family to identify outcomes. Again, this better matches a family’s perspective. The ‘problem’ may not be solved when a single, time-limited intervention is over. However, there are many places where the impact of the intervention may be supported or embedded. The CAF process looks beyond individual service intervention and identifies the many ways in which an outcome can be supported.
A co-ordinated and outcome focussed approach
My son was referred to a community paediatrician for a generalised development assessment. This led to a further referral to ENT (Ear, Nose and Throat department) and a diagnosis of severely enlarged tonsils, obstructive sleep apnoea and a dust mite allergy. Treatment for each of these conditions led to an improvement in breathing, speech and behaviour.
My son was also referred to a child psychologist within the CAPS Team (Child and Parent Support Team). She identified that there was a link between my son’s delay in toileting, his speech/ comprehension difficulties and his impulsive behaviour. This meant that we needed a separate programme to explain and encourage continence for him. This was not advice we would have found in any readily available book on toilet training or childhood development and it had a massive impact on my son’s continence.
And most importantly:
My son had these interventions BEFORE he started at full time school nursery. The process meant that he benefited from early intervention at a key time in his development that ensured that some preventable problems were, quite simply, prevented. It also meant that he started nursery with one multi-agency plan for intervention, including a summary of everyone involved and what they were committed to do as part of their regular remit of work. This was incredibly helpful for the school and guided his early school action plus input.
Challenges to getting a CAF
Getting a CAF is not always easy. There is a lot of misunderstanding about the role it can play. Many professionals think it is only for serious child protection cases – times when there is a risk of serious harm and where that harm will most likely come from the action (or inaction) of parents. Other professionals worry it is time consuming or might commit them to doing things that are outside of their job.
I understand these concerns; people are busy, there are so many commitments and targets that need to be met. However, I also know that no professional gets up in the morning with the intention of failing a child due to a lack of communication. CAFs are specifically there to help children (and professionals) where no agency alone could possibly solve a problem. It is great that everyone has their own specialist area, but some children have complex problems that need a co-ordinated approach for any one intervention to be successful.
It is also true that there are some times when there are risks posed when a CAF would be used (e.g. where there is domestic abuse that is not of a level where more intensive/statutory intervention is considered necessary). However, CAFs are most effective when they are used as a multi-agency approach to help children with complex needs or else as a tool to guide early intervention for a child who could not possibly meet their potential without this early support.
Perspective of a professional
When it comes to my son’s case, I am first and foremost, a parent. However, I work in a connected safeguarding field and have another perspective as well. Five things that I know from this perspective are:
Professionals are often as frustrated as parents by lost referrals, uncoordinated support and lack of communication. This makes their job harder and can be very demoralising. A CAF is designed to improve joint working which is to the benefit of everyone.
Professionals like other people to think well of their service. A CAF won’t get you anything for your child that you are not entitled to. However, it will get you the best of whatever is available that you are eligible for.
Professional embarrassment is a powerful force. If someone says they are going to do something they are unlikely to turn up to a meeting of their peers and admit they haven’t done the one reasonable thing they agreed to do at the last meeting.
Parents will ask for help for anywhere they think they can get it. This can lead to duplicated effort from different professionals. A CAF prevents this happening and means that everyone is clear on who is doing what.
People who are doing this kind of work like to see the impact of their intervention and adore success stories. A CAF is an excellent way for professionals to see the role their work plays in far larger successes such as making a wide-ranging and long term impact on the life of a child and a family. It’s really nice to share that success.
Ultimately, a CAF is just a set of forms and series of meetings. It is the process that this unlocks that is truly helpful to a child. The problems above are not the only difficulties my son has faced and the CAF described is not the only one he has had. I would recommend the CAF process to families with children facing multiple difficulties. I would also recommend involvement for any professionals involved in working with children and families.
I am grateful to the CAF process and all the professionals involved for helping us to work towards our priorities and to deliver their interventions in the best interests of my son. It helped relieve stress for my family, improved the quality of support my son received and will ultimately bring my son closer to achieving his potential as an individual. As a parent these are some of our key priorities and outcomes worth working towards.