Speaking out – not suffering in silence

An example of how a one-page profile can help communicate the essential information needed to support a child with a long term health condition in school. Jessenia doesn’t like to make a fuss and can find it difficult to speak out about what she needs. Her one-page profile does this for her and ensures she is not put at risk because of a lack of information or understanding.  

Jessenia's one-page profile

Jessenia’s one-page profile

Written by Jessenia’s mum 

My eight year old Jessenia attends Oxley Park Academy and is in Year 4.  She was born with a congenital heart defect and has had four major heart operations since her birth, and many minor procedures. The last one was when she was five years old.  Jessenia is a child that likes to please the adults around her. She wants to be recognised for her well-behaved manner and strives for this recognition. She has a maturity about her and relates more to older children and adults.

As Jessenia’s mum I felt that she needed a one-page profile because physically she looks well, so unless you know of her heart condition, it would be difficult for someone who didn’t spend much time with her to recognise that she was having difficulty.  PE is quite demanding for Jessenia and although she wants to join in with her classmates she can’t always keep up and often just needs to sit down and rest.

Also walking long distances is very difficult for her as her heart has to work twice as hard as everyone elses and therefore she tires a lot quicker. She is flat footed too and this causes pains in her legs. We wanted to make sure that adults would recognise when Jessenia needed help as Jessenia herself doesn’t like to make a fuss and tends to suffer in silence because she doesn’t want to disturb the class.

Signs of Jessenia needing help can include constant coughing, sweating and tummy pain.  Jessenia finds it hard to eat, drink and breathe together and therefore eats a lot slower than her peers and subsequently needs more time to finish her meal or drink. This is why we asked that she be allowed to eat some of her lunch at break time and be allowed to drink during class time.

Jessenia’s one-page profile is kept in her classroom and also a copy in a central file. It helps her teacher to recognise when she might need some help and also lets her know what Jessenia’s needs might be when she is in difficulty.  It also means that if her usual teacher or teaching assistants are not around, the crucial information is readily available for whoever is in charge

Jessenia has found her one-page profile particularly helpful because it means that she doesn’t have to explain to adults why she is using the lift and why she needs liquids throughout the day.  She lacks confidence and doesn’t like to be put on the spot. The profile has also helped Jessenia because she knows that all the adult staff are aware of her issues and if she finds something difficult she is more comfortable to say so.  She now appreciates that others want to help her and will keep an eye on her.

As her mum, knowing Jessenia has a one-page profile has given me the confidence that all adult staff taking care of her when I’m not there are aware that she has a heart defect and that she is physically unable to keep up with her classmates sometimes. It also means that when she shows real signs of difficulty and may be in trouble, I am reassured that people know exactly what action to take.

The youngest person yet to use a one-page profile!

The youngest person yet to use a one-page profile. Baby James was just three days old when his mum created his profile to help hospital staff understand how best to support them both.

James' one-page profile

James’ one-page profile

Written by mum Deb

James arrived a day after his due date, after around 16 hours of labour.  The cord was around his neck, he was in a difficult position, and so we were advised that we needed a vacuum delivery. He was born just before 8pm under a blue moon.  He was the most beautiful purplish slippery floppy thing that I had ever seen.  After a brief cuddle, he was whisked away to the special care nursery to await a visit from the pediatrician.  My friend and student midwife persisted with staff until they returned my baby to me, looking a healthier shade of pink and gazing endlessly at me with his deep dark blue eyes.

Aside from a bruised and swollen head, he was deemed healthy and okay to see the doctor in the morning.  The nurses decided that I was too fatigued to responsibly look after my baby that night, so he was taken back to the special nursery and I spent a sleepless night euphoric, yet pining for my baby boy. My first night as a mother held the strangest combination of immeasurable joy and a complete sense of powerlessness.  I knew my baby and I would both be better off together, but just couldn’t seem to organise my thoughts well enough to do anything about it.

James spent most of the next day sleeping and being woken for feeds.  We struggled to get James to feed which resulted in us both being pushed, poked, guided and prodded in spite of the hospital’s ‘hands off’ policy in relation to support with breast feeding.  By day three I was exhausted and emotional, and James had started to cry every time I tried to position him for a feed.

I had shared my own one-page profile with as many staff as I could, and virtually every new nurse that came on shift sat down with me and we talked through it together.  A couple of staff used it as an opportunity to basically tell me I knew nothing relative to their extensive experience, but the majority listened attentively and asked clarifying questions.  Heartened by this, I scrawled down James’ first one-page profile while he slept and I should have been resting.

In those early days of fatigue and confusion, writing out James’ profile helped me to make sense of my thoughts and to begin to understand this little person.  At a time when any sense of control was fleeting at best, James’ one-page profile provided a way to assert how we’d prefer to be supported.  I received mixed responses from staff, but I have one particularly positive memory that has stayed with me.

It was around two in the morning and a midwife who was close to my own age sat quietly beside me as I attempted to feed James.  As she read our profiles she related stories about feeding her own three children.  She talked about how each baby was different, each wonderful and puzzling, and each very much their own person from the moment they arrived.  She was encouraging and reassuring, and she provided guidance without any sense of pressure.  She told me that our profiles helped her to know exactly what we needed from her rather than guessing and having the usual feeling as though she’s just not quite getting it right.

An added bonus from writing James’ profile at such an early point has been looking back at it so many months later and remembering details that I am sure I would have forgotten otherwise.

Seeing the child that I see

A strong example of how this mum’s battle to constantly advocate and inform has transformed since creating her son’s one-page profile. Now she is able to sit back and listen as she has the confidence that the people supporting her son understand him well and see the child that she sees.

MalcolmWritten by Malcolm’s mum

My son Malcolm is almost 10 years old and is a very smart, funny boy who is such a positive, contagiously happy fellow. We had known from his toddlerhood that he had some delays in his development and seemed to be oblivious to much of the activity around him. It was very clear that he was bright and much of what we saw could be fluffed off as being a third child and my mom had said that boys seem to speak later than girls, so we weren’t concerned.

When Malcolm was 6 he was assessed for Aspergers and Autism. His older brother was diagnosed with Aspergers when he was 6 and Malcolm seemed to be progressing socially and speech-wise, much slower than his peers. At that time he was not clearly on the Spectrum. By the time he was 7, the paediatrician labelled him with Attention Deficit Disorder (ADD) and put him on medication. The medication certainly helped but when he was 8, he started to show signs of emotional struggles that seemed greater than the ADD label. After he was assessed by a team at The Children’s Treatment Network in the spring, they had found his characteristics seemed consistent with an Autism diagnosis.

When Malcolm started his grade 4 year at the age of 9, there were so many new staff members to the school, including the principal, that it seemed a good idea for me to create a one-page profile for them to get to know my son and to know how to help him through any social/emotional struggles he may experience during school. The year prior, he had started to hit himself in the face when he was overwhelmed with frustration, I felt that the staff could understand more about what drove this behaviour, how to recognise the triggers and therefore how to support him to avoid it, as well as how to guide classmates in supporting him in a non-judgmental way.

As a part of my role with Community Living, I have been creating one-page profiles for various facets of people’s lives to help others get to know them. I created a profile for my son for him to enjoy his own information, for him to feel that he doesn’t have to tell each staff member, respite contractor or Camp Councillor about his struggles but can simply hand over his profile for them to learn from. I provided the information and observations as well as found photos of pride for him (the faded photo of him getting a bulls eye in archery) and Malcolm proofed it.

Malcolm’s one-page profile has been shared with his Respite Contractors, his homeroom teacher, and all other supports in his life at school. We have also used it for his transition into a new school where he will be attending Extended French.

It has been very helpful to us as parents. It is easy for people to jump to conclusions about the behaviour of our son as it isn’t a common reaction for a child to try and hurt himself. The profile makes staff aware of this possibility arising but it focuses more on what great things my son can do and interests he has, and it helps people quickly want to get to know him so he can feel safe and appreciated without the stress of a poor reaction from others.

I have found that teachers and students are more protective of him and will rally around him when others might make fun of him or respond negatively.

Whether it is because of the one-page profile or because he is surrounded by a great group of people, it isn’t clear why he is now so engaged and cared about. But it is clear that the profile has eased the constant explanations, the reactions of others, and the quick to judge comments. Our energies are now focused on the future and not having to continuously inform and advocate.

I have found that our time is better spent with teachers and support staff just getting updates and funny stories during meetings now. I really enjoy just listening during a conversation rather than informing and so often there is only positive information being passed to us and not the constant worries of the staff who may not understand why Malcolm is acting in a certain way.

I believe that Malcolm’s one-page profile has helped others move past the negatives and the uncertainties and just see the child.

Not just someone lying in bed 2B

An inspirational example of how one-page profiles can help people in hospital connect with others during confusing and difficult times. Kris had no idea of the impact her mum’s one-page profile would have, not just for them, but for the medical staff, other patients and their loved ones.

A photo of Laurine's one-page profile on the wall in  the hospital

A photo of Laurine’s one-page profile on the wall in the hospital

Written by Kris, a person-centred thinking trainer

Meet my mother, Laurine Kaiser. She has been married to my father for soon to be 63 years. They have three children, myself (Kris) being the middle child in addition to my older brother Stephen and my younger sister Kimberly. Mom was born in 1927 and will be celebrating her 86th birthday in November this year. She has always enjoyed an active life as a Mom, wife, travel companion, pharmacist, bridge player, friend and sister to a younger sister and brother who live in Kitchener.

My Mom and Dad moved in to my home in 2010 shortly after my husband passed away. We spent a few months together before my Mom fell ill for the first time in her life. She ended up at St. Joseph’s hospital in Hamilton where she remained a patient for five months. The doctors had quite a challenge for some time trying to figure out exactly what was wrong with her. She eventually ended up in the Intensive Care Unit (ICU) and spent almost two weeks there before she graduated to the Progressive Care Unit.

At that time my Mom was not able to use words and was extremely tired from the long journey she’d been on in the ICU. On several occasions nurses, doctors, therapists etc. would enter the room and ask me questions about my Mom…did she ever work, what line of work, is she married, how many grandchildren etc. That was when I decided to create a one-page profile for my Mom. Looking at this frail yet dignified and elegant woman lying there so peacefully yet so helpless I knew that I needed to do something so that people could connect with my Mom by looking and reading her profile. It was a way to humanize my Mom and value her as a person with a story to tell and not just someone lying in bed 2B.

I was excited to complete this one-page profile for her, knowing that this would make a positive difference in her life. I created the profile in one night with a dollar store bristle board, a black magic marker and a few photos of her along with the joys in her life.

When I returned to the hospital the next day I couldn’t wait to put it up! My Mom was thrilled with it and stared at it for hours. She would smile and point to people making kind gestures. The nurse came in the room that afternoon and read the board and quickly pointed out that my Mom’s favourite TV show was Big Bang Theory which was also hers. She remarked, “I’ll put it on the TV for her tonight at 7:30. Mom gave her the biggest smile.

Word seemed to get around the floor and the hospital about my Mom’s one-page profile and soon other patients’ families and friends on the floor were asking to see it, vowing to create one for their loved one. It just seemed to snowball with positive remarks from all. Close to the end of my Mom’s extended stay at St. Joseph’s the administration team came to have a look at the profile and said that they should introduce this in their hospital. That was a great day!!

Doing the one-page profile for my Mom made such a difference in her mental and physical recovery. Having this tool created a way for others to have a conversation with Mom and it also provided information about her interests and hobbies which often was a source of some great chats with people she met at St. Joe’s.

I’ve always known that the one-page profile works however I didn’t know the impact it would have on so many people and their loved ones.

 

Finding the right nursery

An example of how this new mum used a one-page profile to find the right nursery for her daughter.

Scarlett's 8 month one-page profile

Scarlett’s 8 month one-page profile

Written by Rowan Hall, Mum to Scarlett

For the first two months of my daughter’s life I didn’t put her down. She looked too small and fragile to be out of my arms and I had an overpowering urge to keep her close to me so that she could hear my heartbeat, smell my skin next to hers, find her milk, know that she wasn’t alone in this strange new world. I was encouraged by friends to move from the living room into the bedroom to get some rest after a fortnight but I can’t even remember feeling tired. All I wanted to do was to look after her. It was early August and the Olympics were on the TV 24 hours a day. Together Scarlett and I watched as Jessica Ennis from our hometown of Sheffield won the gold medal in the heptathlon, Mo Farah became the first Briton to win Olympic 10000m gold and Gemma Gibbons looked to the sky and called her Mum’s name as she took home silver in the Judo. I’ll never forget those moments – I’m teary now as I write. There I was watching people fulfil their lifelong ambitions, realising their dreams, whilst I held my greatest achievement so far in my arms.

When Scarlett was eight months old it was time for me to go back to work. I’d been worrying about this and wasn’t feeling comfortable about the amount of time I would be away from her each day. There was also quite a lot of uncertainty about whether I could do the part-time hours I wanted in my old job and I decided that the best option for my family was to go freelance and be based at home. I started writing about person-centred practices, something I feel passionate about after experiencing the results myself in pregnancy and birth. As well as doing something I loved, my new role meant that I could manage my own time and not leave Scarlett for long periods.

I still had the task of finding the right nursery though; somewhere that I knew Scarlett would feel safe and happy without me. As is typical for me, I did a lot of research and made a lot of visits. But part way through the process I realised that I was struggling to compare the different options. They were all so similar in many ways and there were positives and negatives to each. Part of the problem was that I wasn’t comparing the nurseries against my own criteria but against theirs. I’d come away from each visit with a pile of information; Ofsted reports, health and safety certificates, routines. The Nursery Managers were sharing with me what they thought I needed to know in order to make a decision but the emphasis was all wrong. I needed to think about what was important to and for Scarlett and then make my decision based on her as an individual.

I wrote a list. I didn’t realise it at the time but this was actually the start of Scarlett’s one-page profile. I was thinking about what she needed to be supported well and wanted to use this list to work through our options. I came up with the following criteria: Kindness and attitude of staff, quality of the food, time spent outdoors, approach to play, safety and proximity to home (and me of course!).

Scarlett’s nursery is across the road. They have a cook serving fresh, unprocessed food daily. They have three separate outdoor areas and Scarlett’s key worker is loving and kind to her. I wrote up the rest of her one-page profile and took this across on her first day. I feel confident that they understand what she needs and can support her well, not just because they have a copy of her profile but because when looking at nurseries, I thought long and hard about what was important to and for her as an individual and then found the best match.

Scarlett is a happy, healthy little girl and changes every day. The difference now to when I first wrote her profile is remarkable – and keeping it up-to-date is going to be  wonderful way of capturing those precious moments in time and looking back on how she has developed.

You can read more about using person-centred thinking tools in pregnancy birth and parenthood here.

Decisions are Jennie led, not service, organisation or support worker led!

An example of how one-page profiles can change perceptions and attitudes as well as supporting a person with autism and learning disabilities to make positive changes, growing and adapting with them through life.

Jennie's one-page profile

Jennie’s one-page profile

Written by Suzie Franklin

My daughter Jennie is twenty-two years old.  She has a great sense of humour, is affectionate, creative, honest, determined and fun to be with. She has a lovely home, close family and friends and enjoys art classes, horse riding and trampolining.  Jennie used to be described as ‘challenging’ until she started using one-page profiles and positively changed her life and the way people perceive her.

Jennie has autism and learning disabilities and has worked hard to achieve her independent lifestyle. The one-page profiles she has used over the years have helped her to do this by communicating what is important to her and how people can support her to do what makes her happy and healthy. She is a very impressive young woman.

Jennie’s first one-page profile was used as a ‘top tips’ for everyone in her life to get to know her better, provide consistency in support and communicate with Jennie in the way that was best for her. At the time, Jennie wasn’t able to dictate much verbally but her voice ran throughout and we produced the one-page profile using our in-depth knowledge of what was important to her and how best to support her by closely watching her behaviour and what it was telling us.  It was shared with the rest of her family and everyone who supported her as well as teachers, social workers, doctors, coaches, instructors and even her hairdresser! People who saw it commented on how useful it was and some even helped add to it by saying what they liked and admired about Jennie.

One of the things we realised when we started using person-centred thinking tools with Jennie was that despite having a fun seeking personality she had few friends of her own. Most people outside of her family were paid to be in her life. Having a one-page profile and identifying what was important to her has empowered Jennie to try new activities and develop new friendships. It has put her in the driving seat to make more choices in her life. Jennie even used her one-page profile to show to prospective support staff when she was picking her team for her new flat. It gave them an easy to understand picture about Jennie and meant that she was able to communicate very early on how best they could support her.

As Jennie’s independence has grown living in her own home, the one-page profiles have changed with her. What is important to Jennie and how she needs supporting has changed significantly but this has all been led by Jennie and the people around her keeping her profiles accurate, up to date and always reflecting Jennie’s voice.

Having one-page profiles has enabled Jennie to truly be in control of her own life. Decisions are Jennie led, not service, organisation or support worker led! Importantly, they have also changed the way Jennie is introduced and perceived. Jennie is no longer referred to as ‘challenging’. Now she is described as happy, active and independent. Thanks to Jennie’s one-page profile her positive reputation precedes her and the things that are important to Jennie are kept at the centre of everything that she does.

Suzie Franklin and Helen Sanderson have written a book about Jennie’s  journey, her transition to independent living and her Circle of Support. You can find out more about the book from HSA Press.

Important conversations to support school pupils well

An example of how a one-page profile can be used in schools to support children well. Alice has difficulties with memory and communication and has specific needs that her mum, the school and her health team needed to understand in-depth and from her perspective in order to support her well.

Written by Tabitha Smith, SENCo

Alice oppAlice is a delightful 6 year old, currently in Year 2. She has a twin brother, with whom she gets on well; more so now that they are in different classes. Alice loves getting involved, being in the ‘thick of things’ and enjoys knowing what is going on. She is popular with adults and children as she always has a smile on her face.

Alice’s difficulties began to emerge when she was in Year 1. Having had speech therapy for her speech sounds, it became increasingly apparent that her difficulties went deeper than just her expressive communication. Alice was not making the progress that we would have hoped, and the main concern was the real difficulty she had in recall. With increasing concern, her mum ensured that her hearing was clear, arranged for an appointment with the paediatrician, and requested the involvement of the Educational Psychologist.

We knew that Alice’s needs were very specific, revolving principally around her difficulties with memory. Recently, she has become more self-aware that she cannot remember things, and this is upsetting and worrying her.

As a team supporting Alice and working with her on a daily basis, we felt that a detailed one-page profile would ensure that all adults had an empathy with Alice, as well as being given useful advice on how to support her.

Initially, we had a ‘Team Around the Child’ meeting with class teacher, SENCo, mum, Educational Psychologist (EP) and a trainee EP. We decided that the best course of action was to undertake a full assessment of Alice to establish exactly her areas of strength, as well as those areas to support. Once this assessment had been carried out we met again to pull together information for the three areas of a one-page profile. The draft was sent to the EP who carried out the assessment, as well as to mum and the class teacher. All suggested slight changes to clarify the information contained within the profile.

Alice’s one-page profile is kept in the register so that supply teachers will know how to support her well. The Teaching Assistants working in the class have a copy. At the end of each academic year, the profile will be handed on to Alice’s new teacher to ensure a deep understanding of her needs and how best to support her. It will be kept up to date through review meetings held twice a year, in addition to the parents meetings held twice a year.

Having a one-page profile has made a difference to Alice, and to the adults around her. The process of creating the profile is extremely valuable; important conversations took place to really understand Alice and how we can meet her needs. Alice’s mum feels listened to, and her teachers and those around her have a clear ‘road map’ to support her learning. Both teacher and mum say ‘the process of information gathering and in-depth discussion is so valuable. It gives everyone a chance to share concerns and to create a sensible way forward to support Alice and to ensure that all those around her are fully aware of her needs.’