Well-being in Down’s Syndrome Students

Introduction

This analysis explores the factors that are associated with well-being for students with Down’s syndrome and the various measures that parents, and teachers can take to improve the well-being of students with Down’s syndrome in mainstream secondary schools. The analysis takes a thematic approach, each theme representing a concept of well-being as mentioned by the interview respondents. The following table illustrates some of the themes and sub-themes that emerged from the analysis:

Selecting schools with good culture of inclusivity

Children with Down’s syndrome require equal treatment with their non-disabled counterparts. To ensure their safety and well-being, the schools need to develop a culture and philosophy of inclusivity where thy value children’s equality and acknowledges the diversity of human population. This implies that the school need to welcome the disabled children and handle them with the same enthusiasm, professionalism, experience and skills that their non-disabled counterparts are handled with. The existence of the culture and philosophy of inclusivity in mainstream schools or not plays an important role in parent’s decision-making to admit their disabled children in mainstream schools. For instance, when asked about the criteria they used to select a mainstream secondary school for their children, the interviewed parent noted that they were looking for schools with the right environment where the health, safety and well-being of the child is assured, and one that teachers have the best experience to handle disabled child:

P: ….I was looking for a school who had the right sort of attitude to having a child like E, that would be welcoming and that would have ideas about how to provide for her. I was also looking for a school not necessarily with experience of Down Syndrome

When asked what made her choose that specific school for her child, the interviewed parent noted that the school had developed a culture of inclusivity by teachers being positive towards the children and that the school was trustworthy enough to assure her of her daughter’s safety and well-being:

P: …I was invited in immediately to a meeting with the headteacher was your school and at the meeting she was positively enthusiastic about having E and you know she really wanted me to feel from the very start that this was the right school for her. So it was really that initial reception followed by all the follow ups from all the people at the school including the SENCO, the efforts that everyone went to, to assure me that E would be welcomed and be properly provided for by the school

P: …a girls school, a very local school, it felt like I had hit the jackpot. It was all these things and they were so welcoming and thank you for having her

Participation in extra-curricular activities

Indeed, there is evidence from the learning support assistants (LSA’s) that the school made several efforts to develop and maintain the culture of inclusivity and by effect promote the well-being of the disabled child. For example, the LSAs’ responses highlighted how the school had maintained a culture of inclusivity by allowing the disabled children participate in curricular and extra-curricular activities together with their non-disabled counterparts. For instance, here are the responses when LSAs and the parent were asked about any other activities that the child participated in apart from academic activities:

LSA1: Yes, she has. She did a reading, and she was asked to present something on French. She has done this on more than one occasion.

P: She took part in the Dancing Club and loved this. It was fantastic and she loved it.

P: She took part in Sports Day and took part in various activities for example the javelin, shot put etc.

LSA2: She has taken part in dance and drama productions at school. There is Sport Day – she does at least three events each year. Shot Put is her specialty and the Sports Department has provided a special ball for her to do that.

Developing inclusive school policies

Apart from inclusion of the disabled children in extra-curricular activities, developing the culture and philosophy of inclusivity can be enhanced by establishing a fundamental policies and beliefs of inclusivity within the school through ethos such as mission and vision setting. For instance, when asked about the school ethos, the respondents indicate that:

LSA1: Well I think of the School’s Mission Statement and the sentence ………. put this in So at school we do every thing we can to support this student, to prepare her for when she gets old and this is what we are supposed to do

LSA2: So if you ask me, what would be even better, to be honest in this point in time I am not aware of anything that could have been done better because I think that we fulfilled the need that E’s parents wanted her to be educated in a girls mainstream secondary school and I think that she fully experienced secondary school life. She was immersed into the ethos of the school and took part in everything…

LSA1: … Well, what I think went well was this student was treated very much the same as any other student in this school with or without any kind of learning difficulties

Therefore, mainstream schools can only be considered successful in ensuring the safety and well-being of children with Down’s syndrome if they have developed and maintained a culture and philosophy of inclusivity. They must develop policies to support it, explicitly thought of it and embraced it by valuing equality and diversity among the children.

School organization and use of resources

Effective transitioning

The school’s organization and use of resource also plays a role in determining the well-being of children with Down’s syndrome. The wide range need of children with Down’s syndrome means that schools must be organized in a manner that supports flexibility and adaptability of the student’s learning environment both inside and outside classroom. For instance, hen children and transitioning from primary to secondary schools, teachers must ensure that there are enough resources and conducive environment for smooth transitioning. When asked about the measures put in place to ensure that the child had a smooth transitioning and a strong start for secondary school, the parent mentioned coordinated approaches to transitioning as some of the most important factors required to ensure a good start:

P: I had lots of chats with the SENCO and I took a period of extended leave from work when she started secondary school. I seem to remember coming in and having quite a few meetings with you and the various professionals who were seeing her, speech therapists and that sort of thing and I was aware of because the school had put so much effort into transition they had a pretty clear picture of E’s strengths and weaknesses

As illustrated in the response above, the parent must have spent a lot of time coordinating with teachers through organized meetings to understand not only the child’s needs but also her strengths and weaknesses. This not only prepared the parent for her responsibilities in the well-being of the child but also enabled the teachers to develop a tailor-made approach to handling the child. The parent’s responses corroborate with the responses given by LSAs when they were asked about the existence of any program to ensure a smooth transition and whether they participated in those programs as illustrated below:

LSA1: she had two form tutors who before me but there may have been something put in place before I came on the scene

Lsa2: Okay, well in addition to the school SENCO attending the primary school and meeting with their SENCO, I attended the Annual Review for E at the end of Year 5 at the primary school and I met the SENCO there at the time and met the parents and outside agencies. Then later I and another colleague visited E at primary school so that she was familiar with us and that we were also able to observe her level of ability

L2: The school followed the Transition Plan laid down by the Down Syndrome Association that was provided by E’s mother and the SENCO in the school was really designated as E’s ‘security blanket

Outsourcing important services

Apart from facilitating effective transitioning, the well-being and success of the child can be facilitated by organizing and outsourcing certain services or resources that the school might not have but are necessary for enhancing the child’s wellbeing. For instance, when asked whether there was any help sought from external agencies to support the child, the respondents agreed to the existence of such an arrangement as follows:

P: …Well, yes there were lots of agencies involved. There is obviously the long-standing specialist speech therapist who had been seeing E when she was tiny and I had this arrangement with her and then there was the local authority or local health authority speech therapists…

LSA1: So, yes there was inset when the professional from DSA, support via senco via learning plans, I met with DSA to look at comment on my resources. Yes, I have been supported

LSA2: We have quite a lot of support for E in school. There is a specialist speech and language therapist who comes in each week with a specialist in Down Syndrome, we have the school’s speech and language therapist, we have the hearing impairment specialist teacher coming in twice a term

This shows the extent to which schools can organize and coordinate resources to deliver effective education and care to children with Down’s syndrome win mainstream schools without having to transfer the child to a specialized school. It implies making an extra effort to ensure the safety and well-being of the disabled child within the mainstream school.

Maximize the use of resources

Apart from seeking and organizing external resources, teachers can also make effective use of available/internal resources to facilitate effective learning and ensure well-being of children with Down’s syndrome in mainstream schools. For instance, when asked about the resources that they drew to effectively plan for and deliver the child’s needs, the respondents mentioned several of them as follows:

LSA1: I think the main thing we focused on initially was her Education, Health and Care Plan (EHCP). I read that in detail and followed the advice of the SENCO. We also did our own screening so from 2016 to 2020 (the present), we have run tests on E, these are tests we would use with our students in school although we understand that E’s learning profile is different.

LSA2: She has a special chair and a special table which to my mind I cannot see any benefits whatever. She can write for me and do practical stuff for me and the table is always on that slant, so if she is doing stuff it is not level..

These responses highlight not only the importance of maximizing the use of internal resources but also the need for mainstream schools to invest in tools and equipment for supporting children with Down’s syndrome when they join mainstream schools. Equipment such as special chairs and tables facilitate easier learning for such disabled children.

Role of learning support assistants

Promoting the child’s independence

The well-being of children with Down’s syndrome is much supported by the commitment and skills of learning support assistants who support the child. This implies that schools must identify and acknowledge the importance of having well trained and skilled LSA who will not only enhance the child’s integration into the mainstream school but also be responsible for their well-being. In the current study, the interview data reveal several pieces of evidence showing the important tole of LSA in enhancing the well-being of children with Down’s syndrome. For instance, when asked about the help that LSA delivered to supporting the child, the parent noted how LSA assisted the child to be more independent and improve on her academic work.

P: She needed a lot of help and she would need a member of staff with her most of the time to help her physically and academically but she has become more independent over time but I can see from the home education we have been doing for the last few months I realise the support she needs with academic work. So a lot of help and support with academic work

Based on the interview Reponses, the LSA not only played their part in supporting the child but also demonstrated to the child’s parent their capabilities of handling the child for purposes of reassurance and trust. For instance, when asked about their perception on the relationship between the child and LSA, the child’s parent noted how the staff demonstrated experience and capability of handling the child:

P: I met with Miss W at a parents’ evening prior to the girls starting in Year 7 and she came and sort of sought me out and she had met E by then and she told me how much she was looking forward to working with E. Mrs P and Miss W made such an impression on me at the start. Mrs P was clearly very experienced, and Miss W was very young but different ways but they were both such wonderful people

This demonstrates that LSAs not only have the responsibility of caring for the well-being of children with Down’s syndrome in mainstream schools but also to reassure parents of those capabilities.

Effective lesson planning

On the other hand, when asked about their role in supporting the child, each LSA mentioned their contribution to the child’s well-being as generally planning for the child’s effective learning and addressing any challenges that might arise during the learning sessions:

LSA1: she has a limited concentration span, it has to better to interactive and she has to seea result It has to be short, sharp and result. Short sharp and with an outcome and everything has to be a continuation of that…. She has to be cajoled at times if she is to actively continue – she can at times not want to do something. She needs to cajoled with things she really needs to do. She is now becoming defiant as she gets older and needs to be cajoled.

From the responses above, children with Down’s syndrome might encounter problems such as poor concentration and non-responsiveness. To address this, LSA have to develop tactful strategies for dealing with the child and ensuring that they do not keep up with the learning. This realization corroborates with the responses of a second LSA who when asked about their typical day with the child, mentioned supporting the child through mainstream lessons through various activities and responsibilities including determining the child’s daily learning timetable, the day’s subjects, as well as how she can get as much support as possible; all which are meant to ensure the child has smooth learning sessions:

LSA2: My role is Lead LSA and my responsibilities are to support E in her mainstream lessons/school and I have been working with her since Year Seven…Well, the structure of the day is that she would register with her form tutor in the form base in the morning and then she takes part in lessons with an average of about eleven other students. She has a twenty minute morning break and a thirty-five minute lunch…

Another role played by LSAs in promoting the well-being of children with Down’s syndrome is to promote the child’s independence within the school regardless of the support she receives from LSA. For instance, when asked whether she things much effort has been made to enhance the child’s independence at school, the parent noted that:

P: Yes, I do, most and I understand that E now moves around school fairly independently and she now goes to lunch and play without support. Yes, I think there have been lots of attempts to do this and again this can be one of the down sides of a mainstream school.

This indicates that the child’s independence is an important aspect of her well-being because the aim is to assist her make as much decisions as she can and to be in much control of her life just like her non-disabled counterparts are despite the fact that they still need much support:

P: Her work needs to be heavily differentiated for her so that she can access it so she still needs a lot of adult support so I think there has been a lot done to promote her independence but I think there is a limit to how much can be done…

Working with parents

Encouraging social participation

Parents play an important role in promoting the well-being of children with Down’s syndrome especially when they join mainstream schools. This is because they must keep an eye on their children while maintaining a constant coordination with learning support assistants to ensure the children have a smooth integration into the mainstream school system. In the current study, results revealed several instances where parents coordinated with LSA to promote the child’s well-being. For instance, when asked about any efforts they made to develop a relationship with their child’s peers, the respondent noted how she encouraged the child to participate in a dance group together with her peers:

P: I really think E found her place there so I would say that is the main thing but also the dance group that she is in and a lot of the girls from SJ were in that as well and they all participated in that activity together…

Effective teacher-parent communication

This illustrates not only the parent’s role in enhancing wellbeing of the child by encouraging social participation but also encouraging peer support. Meanwhile, the interview results also revealed how parents or family worked together with LSAs to promote the child’s well-being. For instance, when asked about the ease of communication with parents and family to enhance the wellbeing of the child, the LSAs responded by acknowledging how useful it was to work with the child’s parents and family:

LSA1: Socially, um, I think at home more socially through sleepovers and friends and visits from her family, the cousins, her sister. She has always been very social and she loves going away on trips with her family and she will come back and say she’s been wherever she’s been and she’s had a lovely time and so she does have a social life.

LSA2: I think it was easy because we had a notebook for the first three years in which the LSAs would record what had happened in any particular day with E – what happened in lessons, what she had had to eat, if she was unwell, if there was a problem and this provided E with a basis in which she could go home and discuss with her mother what had happened in