A Unique Child: Inclusion - Supporting... Grace

Amanda King
Tuesday, January 18, 2011

What approaches enable the inclusion and support of a child with high-level medical and physical needs in mainstream early years provision? Amanda King demonstrates with one successful case.

Grace is a very active, very determined two-year-old, who has CHARGE syndrome and has been integrated successfully into our Nurture Nursery.

Highly complex, CHARGE syndrome is characterised as a genetic cluster of birth defects and incorporates extensive physical and medical difficulties which present differently from child to child. It can be life-threatening. The syndrome occurs in about one in every 9,000 to 10,000 births worldwide, and usually, there is no history of the syndrome within the family.

In Grace's case, she has problems with swallowing and breathing and, in common with most children affected with CHARGE, she also has hearing loss, visual impairment arising from coloboma (a malformation of the eye), and balance problems, all of which have delayed her physical development and communication skills.

Despite these at times overwhelming obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational and social expectations. Grace is thriving.


Grace was referred to our centre via the local authority's Integrated Disability Support Service which, with her parents, was keen for Grace to reach her full potential and develop relationships with other children.

She joined our Nurture group, whose purpose is to enable young children, from the age of two, to explore within a safe and stimulating environment, develop social skills in a small group and gain independence. The children are often leaving parents and carers for the first time, and induction and session times are flexible to support this.

Grace was able to access funding to attend the group ten hours each week through our participation in the 2HELP pilot project, which facilitates access to early years education and family support for vulnerable children or those who meet specific criteria in relation to medical or special needs. The impact of this project has been immense, providing the best possible start for the children with the greatest level of need.

Our centre was felt to be appropriate in that the learning environment was easily accessible, designed for younger children, and our practitioners had previous experience supporting children with medical and physical needs.


When caring for a child with complex medical needs, it is important that settings are clear about what they want to achieve for the child. Our commitment to supporting inclusion is built around three principles: access, encouragement and participation.

These provided our starting point when reflecting on our aims for Grace. They also incorporated the wishes of Grace's family and the wider professional opinions of a multi-agency team which includes speech and language therapists, the Area SENCO, the Visual Impaired team, the Hearing Impaired team, the Integrated Disability Service and the Community Nursing team.

Our current focus for Grace includes:

  • - Accessing a full range of learning experiences, in particular sensory experiences
  • - Encouraging and supporting Grace's independence and increasing physical mobility
  • - Facilitating Grace's participation through her developing language and social skills


Initially, we were a little daunted at the prospect of meeting Grace's needs, which included feeding through a gastronomy-based Mic-Key button, administering medication for asthma and regular suction to keep Grace's airway clear.

First, we arranged a home visit. Meeting Grace and her mother in a relaxed environment was invaluable in building positive relationships and beginning to understand the level of support Grace would need.

We then put together an information pack, risk assessment and care plan. All were required before Grace could start at our setting. We agreed with Grace's mother that practitioners could call her mobile at any time with a query or concern, and we established clear information and procedures in relation to emergency action.

We shared information at a staff meeting, attended by the Area SENCO, Community Nurse and Visual Impairment support teacher. The care plan was displayed clearly in several locations throughout the Nurture Nursery.

It was also necessary for members of our team to be trained and deemed competent by the community nursing team before we could take a lead in caring for Grace. To facilitate this, a community nurse accompanied Grace while training three members of our team, which took about three months.

Because Grace has specific 1:1 support, it was important to train several people so that she could still attend if practitioners were absent.

After a successful induction period, Grace now attends three 2.5-hour sessions a week. Grace's mother brings her to nursery so we are able to communicate important information directly.

Within the sessions, Grace's key person keeps a diary, alongside our wider assessment systems. This is shared across the team, providing information for the head of centre to discuss when she attends regular multi-agency meetings.


Despite her medical needs, Grace is very bright and has a positive disposition towards new experiences. She is becoming independent and enjoys exploring the learning environment and playing alongside other children.

She responds enthusiastically to music and rhyme time and gives a fantastic rendition of 'Twinkle, Twinkle Little Star'. Initial assessment was made using a 'Teaching Talking', an assessment tool for screening and intervention for children with a delay in their spoken language.

Grace has play targets which form her Individual Education Plan. We capture the learning through writing 'learning stories' to provide information for a record of achievement.

The children readily accept Grace into their play, understanding that she needs to hold the resources, such as chubby chalks, up close to her face to see them before she will draw, and that she needs plenty of space.

Grace participates in snack time and lunch club, having her feed at the same time as the rest of the group. We explain to the children that Grace has a button in her tummy for the food to go straight inside, and they observe both the feeding and suction processes with interest and in a matter-of-fact manner which belies their age.

Amanda King is head of centre at Bedworth Heath Nursery and Children's Centre, Warwickshire



To meet Grace's needs, we:

  • - present resources with auditory and tactile properties to capture her interest and support the focus areas within her IEP
  • - carry out observations to gain an understanding of how much vision and hearing Grace has, then build on this and by adapting provision. For example, by having a story in a quieter area of the room we take account of the impact of the ambient noise levels within the room.
  • - provide print, pictures and symbols in a large size using contrasting backgrounds
  • - have reorganised the furniture so Grace can move easily between chairs and tables.

Sensory experiences

We observed she disliked wet sensory resources, such as gloop and shaving foam, and responded by providing a range of dry sensory resources, such as feely books, scarves and shiny discovery baskets.

Communication skills

  • - We take care to model language clearly and give Grace time to respond
  • - We use a total communication approach (using clear gestures, simple signs, facial expression, symbols)
  • - consider the use of tone and pitch of voice for different situations

Social developments

We model social skills such as sharing and taking turns.

Grace joins in lunch times with the other children, enabling her to experience social interaction in an inclusive atmosphere.

For Grace there is a 'communication bubble' in that her visual and auditory capacity limits her involvement with the environment to only what is in her immediate vicinity. To counter this, her key person will often include Grace and one other child in an activity in a quieter area.





Theme: A Unique Child

Principle: Every child is a competent learner from birth who can be resilient, capable, confident and self assured


  • Inclusive practice
  • Health and well-being
  • Child development

Theme: Positive Relationships

Principle: Children learn to be strong from a base of loving and secure relationships with parents and/or a key person


  • Parents as partners
  • Key person
  • Respecting each other

Theme: Enabling Environments

Principle: The environment plays a key role in supporting and extending children's development and learning


  • Observation, assessment and planning
  • Supporting every child
  • The learning environment
  • The wider context

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