Osteogenesis imperfecta advice for nursery and pre-schools

Starting nursery or pre-school

Children with osteogenesis imperfecta (OI) can vary a lot at this age in their ability and needs. It is difficult to construct advice for all in one resource. The following is generic advice.

Make contact or arrange a meeting well in advance of the child’s start date, consult with key workers involved in the child’s care, and parents. This gives everybody:

• opportunity to get to know each other
• chance to highlight specific needs that the child has
• time to plan how these needs are going to be met
• time to assess the environment for accessibility, especially if the child uses a mobility aid or wheelchair

Develop a management plan from this initial meeting, include a care plan, a fracture management plan and relevant risk assessments.

Supervision

Children with OI require additional physical support and supervision when compared to their peers which varies according to the severity of their OI, age and their stage of development. It is in these early years that most gross motor skills are attained and a time where accidents and falls are most likely. Children should have supervision when moving and interacting with others to promote safe acquisition of gross motor skills, which reduces chance of falls which may lead to fractures. Identify and plan for this at the initial stages so that it does not delay the child attending nursery.

It may be possible to offer extra staff support from within the nursery setting, with applications for additional funding from the local offer. Seek support from key workers, professionals and parents to make sure appropriate recommendations are made.  This may form part of the evidence for an education, health and care plan (EHCP) application, however may not be applicable to all children and therefore should be guided by the education setting in the first instance.

Considerations within the environment

Consider the current physical abilities of the child, and their potential for fractures. They may need periods of time in cast and require the use of a walking aid or wheelchair, during which time they will require more support and space than usual. Key areas for consideration should be:

Toilet areas

• Consider the space, heights and accessibility of toileting areas.
• For children in nappies, identify a suitable change area to accommodate needs of both staff and your child. Staff can refer to the ‘Caring for an infant with OI’ for advice on safe handling and nappy changing techniques.
• For children that use the toilet, consider the height of toilet and sink in your risk assessment. Some children may require equipment to support access and independence.
• Younger children may use a potty if they can control sitting down to the floor from standing on their own but may need specialist provision. Consider more sturdy brands with arm rests.
• Toilet areas often get wet. Staff should be extra mindful of this when supervising a child in this area.
• Contact the child’s occupational therapist for advice on accessing toileting areas and promoting independence.

Corridor or cloakroom

• Place clothes pegs at a height accessible to the child and at the end of the line. This prevents them being knocked during busy periods.
• Use a staggered entry and exit to the classroom area to allow safe access.
• Supervise the child, particularly if the floor is slippery on wet days.
• Remove loose rugs where possible as may be a trip hazard.
• Keep cloakrooms and corridors clear of clutter.

Seating and positioning at the classroom table

• Children need an appropriately sized table and chair to allow good postural alignment with feet supported. For some children, specialised seating or additions may need to be provided. A physiotherapist or occupational therapist should be able to advise with regards to sitting posture.
• Wheelchair users should be able to access the table at an appropriate height to participate in group activities.

Floor time

Some children may find it uncomfortable sitting on the floor, and may prefer to sit on a cushion or a chair. Most children should be able to sit on the floor without difficulty and this can be encouraged, we advise positioning them towards the edge of the group. Specialist seating can be provided from occupational therapist if the child has more moderate to severe OI.

Standing activities

These could include painting with easels, sand or water play. Use a wide-based stable step or a lower play surface if they are struggling to reach the activity, as many children with OI are shorter than their peers. Use alternative play positions and equipment for a wheelchair user to allow their participation in activities, the child’s occupational therapist or physio may be able to advise on this.

Things to be aware of:

Fine motor activities

Due to increased laxity in their joints, often affecting their fingers, some children may take longer to develop fine motor skills. Offer lots of opportunities to develop these skills. Shorter or chunky shaped crayons, pencils and brushes may be easier to hold for children with immature fine motor skills. Contact the child’s occupational therapist if there are any concerns regarding fine motor or pencil skills.

For more information see ‘Fine motor skills in pre-school children with Osteogenesis Imperfecta‘.

Gross Motor activities

Gross motor skills vary at lot in children with OI, it depends on how often they have experienced fractures or surgeries. At this young age children are still developing and catching up with peers.  Wheelchairs are great to support independent mobility, but often the ultimate goal is to establish walking. Allow time to practice their gross motor skills.

Tiredness and pain

• Children with OI often tire more quickly, and may experience aches and pains, particularly following physical activity. Children may need to rest more regularly than their peers.
• Naps can be taken on the floor, but the child may be more comfortable on a more padded mat. Sleep the child in a cot if there are any safety concerns about other children tripping and falling over the child. Children with more severe OI should be placed in a cot.
• Give wheelchair users the opportunity to change their position regularly throughout the day, including time out of their wheelchair.
• Some children need simple analgesia to help manage their pain which will need to be administered in nursery; discuss this with parents.

Lunchtimes

• Some children may take longer to eat, particularly if their teeth are affected with dentinogenesis imperfecta (DI), see Diet and health advice with metabolic bone conditions.
• Provide appropriate seating at lunchtime to make sure good posture and safety.
• Some children struggle with using cutlery and so may have specialised cutlery to improve skills and independence. An occupational therapist may be able to complete an assessment to support provision of mealtime equipment.

Play time and friends

It is important for all children to build peer relationships and make friends. Play can pose additional challenges for a child with OI so use additional supervision during these interactions to promote inclusion and maintain safety.

Other children may benefit from a discussion with staff on how to be a good friend and help them understand the risks in play.

Outdoor play, games and activity days

• Exercise is important for all children as it improves health and wellbeing.
• All physical activities can and should be modified to ensure inclusion for all children.
• You could seek advice from the child’s physiotherapy team if you would like help to adapt activities. Offer extra support from a classroom assistant at these times, incorporating any specific physiotherapy exercises into their daily activities.
• Risk assess the playground equipment on an individual basis and dependent on the child’s abilities. Avoid higher risk activities such as repetitive jumping, bouncing, tumbling or high-impact games and seek advice from the child’s therapy team if not sure.
• Ride on toys are suitable, but consider the ability of the child and any slopes in the area. Peddles can be harder to manage. Use 3 or 4 wheeled toys for more stability.

Trips and outings

Plan trips and outings with risk assessments and care plans as required. Consider planning regular rest breaks when walking.  Some children may need to use a buggy or wheelchair for longer distances or if you are out for extended periods of time. Provide additional adult support where needed. Trips should be accessible and inclusive. Consider how to transport the child, particularly if they are a wheelchair user.