Harry’s Story

Let’s talk about Harry…

This family has benefited from contact and support with us since April 2018. Harry is 9 years old with a Developmental Language Disorder, who attends mainstream school.

Although often very clever (often referred to in education speak as having ‘spikey’ profiles) and able to excel in certain things, children with DLD can easily become excluded from a classroom-based structure due to their inability to focus, understand and communicate.

Harry is behind at school and almost completely isolated when out of school. He is excluded at school because of his impairment within the school setting and with making friends. His support needs are unmet.

The family have struggled with their child’s education, their relationships with key members of the team around the child were in disarray and they were exasperated at their inability to understand and assert the rights of their child and also to be acknowledged as parents, and as equal partners in care and support for their child.

Harry is 9 and struggles with speech and language, he has difficulty with social situations and often acts up when he is in unfamiliar environments and can’t cope with change very well. Moving from one subject to another, moving to a different location e.g. between classroom spaces, causes stress and can result in outbursts which if not dealt with appropriately causes ‘meltdown’, scenarios typical of children with myriad neurological problems.

The difficulty supporting children with speech and language problems is that many do not follow a ‘pure’ speech and language profile, instead experiencing a blend of difficulties which are challenging to support within a mainstream environment.

Differing viewpoints can cause conflict within a team supporting the child’s needs. The legislation and policy which ensures the rights of the child and the family, has no accountability mechanism built in. Parents therefore often find themselves on the periphery of decision-making which can develop into fractious situations often at the mercy of head teachers and other professionals involved in the team. This causes stress and anxiety for the family and the child can be failed due to the ongoing complexities around managing their needs.

For Harry’s mum this has been exactly the case. Mum and Dad feel that Harry likes school, is clever but fully aware that he needs support in class. They feel he should be in the mainstream class instead of always being put in the additional support needs class with an assistant, who is not a qualified teacher nor trained to support SLC needs. They reported that he has said he feels ‘different’ when he is removed from mainstream class and is bullied by other children.

The ASN class is not designed for learning, instead the majority of time is spent playing, they contended. Whilst acknowledging the needs of the other children, they feel that the environment is not conducive to a positive learning experience and that he is being put in the class because he is not supported properly in mainstream class. It is his behavior that causes him to be put in the other class, Mum says because the support strategy provided for the school by the education psychologist and the speech and language therapist to support him in class, isn’t in place, due to financial and resource constraints.

Harry’s mum had contacted us through our Facebook group, quite upset and felling out of her depth as she felt she was getting nowhere fast. We offered some 1:1 hours of help with Harry and also mapping out the family’s needs and finding out ways in which we could reduce stress, build a more effective relationship with statutory services and ultimately support Harry’s SLC and education going forward.

Making use of the effective Buddy (mediation) model, we determined that much of the family’s concerns were well founded. The SLT service had discharged Harry from 1:1 support as they felt they couldn’t do much more for him, their exit strategy was linking with the school to put in place strategies to support him. Notably, the speech therapist had made known that she was unable to continue support despite the mum’s please to continue, as her manager had ultimately made the decision. The ‘support’ strategies were in fact not implemented which in turn had caused Harry to become frustrated in class, most often being sent to the ASN class for. This did not address his speech and language needs nor address his inclusion needs, nor address the growing deficit in learning opportunities due to his needs not being met.

Everything that the family should have reasonably expected to be offered to their son, had for one reason or another not been put in place. Of course, this had resulted in ongoing frustration, mistrust, stress, anger, a myriad of emotions that all the family had every right to feel.

The Named Person, that is the Head Teacher of the school, conceded that the care plan had a lot of gaps. Despite Harry’s rights being enshrined in law, they were not being applied. The necessary supports identified through SLT (Speech and Language therapy) were not being implemented due to the lack of money to buy in extra staff/resources. The ASN class had to effectively pool a number of children with varying degrees of high support needs which that staff member found difficult to manage. The majority of the time was spent keeping the more vocal and behaviour-challenged children calm and therefore little time was spent on learning activity.

Our support worker was invited to discuss improved options for Harry with the staff member running the class who confided in her that she felt completely inadequately trained or experienced to help the number of children in the class with complex difficulties. She had resorted to searching the internet for ways in which to support children with speech difficulties. She had contacted and engaged in an email dialogue in her own time with a university professor to get some help with another child who had ultimately benefited from her efforts. She had been given a few sheets of paper from a speech and language therapist which she felt were redundant after a few weeks as it had outgrown any positive effect for Harry.

Harry’s Mum told us “..you know this.. if it wasn’t for your help we would have probably given up with the school altogether..months and months of asking..months of waiting for an answer..someone is not available for a meeting..it’s deferred for another month.. I’ve heard it all. And all the while, Harry is sitting playing snakes and ladders in a special needs class. With children who he can’t really play with. He will kick off if he’s around other children who are noisy. His behaviour goes out of control if he’s faced with a lot of movement and noises. He can’t deal with it because he doesn’t understand what they’re all saying and doing. He’s quite happy playing in the corner, and he’ll say he’s enjoying it..but he’s on his own and that’s not getting an education either is it. I wasn’t happy with that at all. He’s really bright He can do so much but they just don’t give him the right help. The head teacher told me they just don’t have the resources. So, whose problem is it then? It made me feel like I was the enemy just asking.”

“It has been a lot better since you helped us work it out. Looking back now maybe I was angry but what do you do when it’s your child that’s not getting what he needs. I’ve a better understanding of how I should go about things if I need to but just now things are so much better for us. The school put in more help for Harry and I have gone back to ask for more support from the SLT.

You’ve helped us lot with things we can practice at home and I think Harry’s behavior has improved and he is definitely more confident in himself. It has meant a lot to this family getting most of the main problems sorted out. Having the time to sit down and work through the different things was a good way to see some light at the end of the tunnel. You just get into a right mess trying to deal with everything at once.

I can’t thank your service enough for that. There’s not anybody out there who helps families who need help with speech and language kids. I was back and forth for years trying to get help. There’s not a lot of people who understand what it’s like for parents who have children with these kinds of problems.”

Unacceptable

Common story, common failures

This scenario is not uncommon in Scottish schools. It is not atypical for us to hear that story from parents and carers who contact us. Over 200 families have presented with a similar theme this year alone. Harry’s parents are the same as so many others struggling to get what their child needs. Parenting a child that struggles to communicate and express themselves is bad enough without having to fight for the additional support that a child is entitled to on top. The aim of GIRFEC is to get it right for every child. Essential supports being withdrawn or not implemented correctly due to service failures is not acceptable.

Not meeting the child’s needs

A child with SLCN who is already excluded at a foundation level due to their communication needs is further excluded in an environment which is ostensibly designed around GIRFEC. For children entitled to a legally defined support plan, the fact that this should involve the parents and the child as key drivers of the design of the support system is crucial. This however is not always the case, a recurring failure of the lack of continuity of ‘team around the child’ meetings due to availability/location of the professionals involved etc often means key participants don’t attend and misunderstanding and gaps follow.

This is frustrating for families who suffer as a result of delays and who often vent anger and mistrust at the lack of service they are afforded. Many professionals will concede that the flawed structure of attending meetings is something that they are aware of but have little choice in relation to their caseloads and varied locations etc. Additionally, the Named Person, the Head Teacher for most younger children, has the statutory duty to manage the Child’s Plan but also manage their school (often teaching classes as well).

The SLT Service operates the Care Aims Model, a service delivery model which on average offers 1:1 support for 6-8 weeks, only to children who reach the threshold for specialist support. What about all the other children who don’t meet this threshold? Research tells us that 10% of children experience speech and language difficulties. In socially deprived communities, over 50 % of children start school with a language delay.

Not meeting the family’s needs

Families can find themselves lacking the tenacity and temerity to pursue the lack of services they feel they are entitled to. Knowing about the rights of children and the family, navigating the specialist world of speech and language, challenging schools, this can be overwhelming for parents. Given that >70% of natural parents will present with the same type of SLC condition as that of their child, understanding the complexities of statutory systems and the need for iterative dialogue requires real determination and skill. Families often say they are fighting (warrior parent syndrome) for what their children need, often unfamiliar with the lack of person centered health service delivery models and reducing education resources that may result in a child’s needs being unmet. Parents of children with SLCN who also experience health and wealth inequalities will find themselves in increased difficulties, a raft of research evidence supports that. The plight of the battle worn parent is something we are acutely aware of.

Creative Solutions

A service that supports families from a holistic perspective, is sensitive to circumstances, transitions, and shifting needs is what’s needed. In addition to providing a range of information and guidance, the service supports families to assert their rights and to become effective advocates for themselves and their children. The need for parents to feel well, reduce and manage the stress linked to parenting disabled children is critical to their roles of effective communicators and educators for their children.

Part of our service program for intensive support comprises an average 6- 8 week program whereby we introduce SLC/parenting interventions using a blended social pedagogy and health improvement methodology, helping to map with each family, the issues they face and seeking to implement a structure to help overcome these. The tools and approaches which underpin the support are CBT based and employ the Heads Hearts Hands approach of Social Pedagogy.

Any SLC intervention offered to the child is delivered by a trained practitioner who can identify and help speech and language difficulties through social education practice and help build self-confidence through designing a program to work with the child directly in the home for approx. an hour or two a week. The practical approaches are taught to the parent in order to facilitate the continuation or practice in the home, upskilling the parents and encouraging ownership, confidence and practical competencies within the primary care environment.

This is entirely in keeping with the most recent Government Strategy for parental involvement, Learning Together, the new National Action Plan for Parental Involvement and Engagement which we are delighted to embrace. Its fundamentals correlate with the design of our own service model, which was well ahead of its time! Because our service is designed around parents, we are acutely aware that parents are the key determinants of any outcomes set for their children. They are the experts, they matter, and they should be at the heart of everything we do.

The family is key to supporting the child and the resilience of the carers and the child takes prime focus in our approach. The wellbeing needs are identified through appreciative enquiry (A.I. another evidence based approach which is particularly good to use as an inclusive communication tool) and we aim to support the emotional needs as well, whether by signposting or using our license for Living Life To The Full, (an NHS endorsed, CBT entry level tool designed for use by support practitioners).

The need to flexibly address the needs of each family and child is key to delivering appropriate support. We consider the length of time we can offer this support and how we can link with other partners to signpost for extra help and to offer the family choices.

Often, the wraparound support along with the collaboration with other children/family service providers we are linked to enriches the experience of the family and the child(ren). We are currently growing a new collaboration, POPS, within the Dundee area, which is designed to offer more needy families an improved service design using multiple resources for different needs e.g., one parent families, disabilities/special needs and of course, speech and language.

These services offer a vital bridge to families who benefit from specialist support not available elsewhere.

The SLCo Family Journey

April 2018

What Mum wanted:

Harry to be able to improve his speech sounds and improve his language skills
Harry to cope better in class and in peers’ environment and make some friends.
With regards education, improve concentration ability and memory.
Improve her emotional state. To feel less guilty and reduce the stress experienced daily. Mum feels extremely responsible for Harry’s development and spends a lot of time looking for help rather than making any progress. She is very worried about Harry’s well-being and school problems.

What Harry wanted:

People to know he is different but not a dummy
His teacher to help him in class
Not to feel everybody looking at him as if he was stupid

What we designed together:

Short term goals linked to SHANARRI wellbeing indicators

Improved communication – achieving /nurtured
better concentration and working memory – achieving
feeling more comfortable at school – safe
improving behavior and reducing stress at school – healthy
making new friends – included
self-esteem increase – achieving

June 2018 Family Progress Report

After several months of regular sessions, the atmosphere in the family has improved significantly. Mum is in touch with other parents whose children have various types of disorders (which contributes to her wellbeing and reduces her feeling of isolation.) Because Harry is settled at school, Mum experiences stress reduction.

After each session Mum shows much interest in the course of activities completed during the session and together with Harry, she is watching exercises and assignments that had been worked up. After several months she feels ready to take up unassisted work with her child.

The next stage will aim at preparing Mum to work independently with Harry with confidence.

Thanks to meetings and consultations with the TAC, Mum is able to articulate Harry’s problems and needs. Due to her improved mental state, she is in a far better position to discuss Harry’s needs in a calm and more informed manner, reporting that her school and SLT relationships have improved overall.

July 2018 1:1 Therapy Report

Sessions with Harry take place once a fortnight and last for 1 hour. Sometimes the sessions are extended, but no more than 10 minutes.
The activities Harry takes part in are diverse. He particularly likes board games, artistic activities, memory games and 3^rd person role play.
Drawing and reading is difficult for him. We devote the least time on these activities, but we are trying to do them regularly.
After a few months, both the family (mother, father) and Harry report as far more self-confident and feels better at school.
Mother organises more diverse activities like swimming, going to spaces where there are more people e.g., going out to playgrounds which certainly influences her wellbeing and engages in more active lifestyle outdoors. This assists with Harry’s mood and optimises his engagement with new children.
Improvement can also be seen in Harry’s relations with class mates, he is more focused on attending to instruction in class and has improved turn-taking and listening skills. School teacher has been involved in adopting key SLCo and classroom management strategies which will in turn contribute to the overall improvement.
Mother’s wellbeing and increase of her self-confidence is recorded.
Mother is very keen on continuing sessions without time constraints, at least till the end of this school term.
In case of Harry, most important would be maintaining on a permanent basis the SLC strategies support helping maintain the improvements in classwork (we should assist with ongoing age appropriate resources and introduce digital at next stage) new activities such as swimming and playing a musical instrument. This will assist with motor skills, attention and build on strengths base – Harry enjoys music and movement.
Constant work on Harry’s memory is essential. It has a direct impact on his progress at school.
Improvement of wellbeing and increase in self-confidence are visible, but still fresh and fragile – it is very important to consolidate them, also by appropriate choice of activities.
The cooperation with both the family and Harry is conducted in a very kind and friendly atmosphere.

Harry’s journey represents a longer engagement and an ongoing support relationship is likely. The excerpt presented outlines the support offered and to give a flavour of the complexity and depth of what the service provided and the benefits gained.