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Achondroplasia in secondary school

What is achondroplasia?

Achondroplasia is one of the most common forms of skeletal dysplasia. It is often referred to as a condition causing restriction in growth or short stature.

Features include shortened limbs, slowed growth, short stature and changes in the shape and size of parts of the skull.

This can include a larger and more prominent forehead. The bridge of the nose may also appear flatter. Due to the shape of the passage between the mouth and middle ear, ear infections and problems such as glue ear are more common in children with achondroplasia.

Children often have more flexibility within their joints in their hands, arms and legs. This is often called hypermobility or hyperlaxity.

Sometimes curvature of the legs can develop as a child grows.

In general, children with achondroplasia are happy and can achieve independence in everyday life. Achondroplasia affects boys and girls equally.

What does this mean for transition into secondary school?

When choosing a secondary school, there are many considerations to take into account. You may want to speak with your child’s occupational therapist or physiotherapist to join you when visiting schools.

We recommend planning for the transition to secondary school is done well in advance, before your child leaves primary school. Once you have chosen a school you would like your child to go to, it is a good idea to make contact with the secondary school’s special educational needs and disability (SEND) lead or pastoral team.

This initial contact will help you to identify whether the school is able to meet your child’s needs.

We then recommended that you have a meeting is your child’s primary school and the proposed secondary school and any health care professionals involved, to outline any reasonable adjustments or equipment needs to help your child’s transition.

This will make sure that your child’s needs can be discussed including:

  • access to the environment
  • movement in and around school
  • necessary equipment provision
  • care plans

It is advised that the meeting should include:

School entry care plan

This plan should focus on your child’s needs and how school can meet these needs. This may include 1:1s to help your child with practical activities of daily living such as maintaining hygiene needs, accessing P.E., moving through school or within the classroom.

Risk assessment

A risk assessment should include any potential risks within the environment and outdoor areas for example, steps, steep gradients, change in floor surfaces.

An evacuation plan should also be agreed in the event of an emergency and for fire drills.

Education and health care plan

Additional support may be needed to meet the physical needs of your child. This is individual to your child and is not always necessary.

If your child needs an education and health care plan, you need to apply through the education authority and have one written up with your child’s nursery and other healthcare professionals involved in your child’s care.

Learning considerations

There may be times when your child may have to attend appointments during nursery time. It is best to plan for these in advance and communicate with your child’s school.

Personal, social and health education

As with any child, concerns can arise about their psychosocial aspects of living with a condition. This can impact on a child’s participation in nursery, developing friendships, play and their general health and wellbeing.

Nurseries and families should be mindful if your child seems withdrawn, if they do not take part in school activities, playtime or seems excluded from friendship groups.

If you are concerned about your child’s mental health, you can see a psychologist either through your GP or your child’s clinical team.

Considerations within the school environment

Your child’s physical function and access in and around nursery need to be considered when accessing key areas, these include:

Hygiene and toileting

The occupational therapist will assess the school campus to make sure there is access to a suitable bathroom. The secondary school campus may be large, so it may be necessary to identify 2 key bathrooms that your child can use. Equipment will be assessed for such as:

The occupational therapist will assess for any necessary equipment to make sure your child can access the toilet and sink. A height-adjustable sink or step box may be needed to make sure your child can reach the sink. Lever taps or tap extensions may be easier for your child to use if they have shorter arms, smaller hands or hypermobility.

Soap dispensers or hand soap and paper towel dispensers should be at an appropriate place to make sure your child can reach them. This will help your child have independence with their own hand hygiene.

A step box can help your child to transfer on and off the toilet with an integrated ring reducer or smaller toilet aperture to make sure your child is sat safely on the toilet.

If your child has difficulty wiping themselves, they may need wash dry toilet such as a biobidet. The occupational therapist can assess for this.

Cloakroom and corridors

It may be best for your child to have a pass which allows them to leave lessons 5 minutes early to avoid the hustle and bustle of lesson change. Arrangements can be made to make sure your child is aware of the remaining lesson and homework so they do not miss any important information.

A lift pass may also be useful where there are many stairs to navigate.

During busy times such as going out for break time, assembly or lunch times it is beneficial if the child is at the front or back of the line.

Tables and chairs

A kyphosis is where the upper back and shoulders become more rounded.

A lordosis is where the natural curve at the bottom of the back becomes more pronounced.

A child with achondroplasia is more likely to develop a curve in the back. This is called lumbar lordosis or kyphosis.

It is important to for your child to have good sitting posture. Slouching and slumping, unsupported feet and over reaching to the table should be avoided.

Mobility

Children with achondroplasia are often independently mobile. However, a wheelchair may be be needed for longer distances.

Fine motor activities

‘Bendy’ joints in the hands can affect strength and dexterity. Fine motor tasks such as keeping up with handwriting, homework and coursework may be more difficult because of pain or fatigue within your child’s hand.

Using a combination of handwriting, and using a laptop or tablet may help your child to keep up with the amount of work they have to do. Typing is easier and uses less hand strength than handwriting.

Specific lesson considerations

Science

To make sure your child can access the science lab benches, height adjustable seating with a supportive back rest and foot rest should be considered. This will make sure your child is safe when doing experiments, and that their sitting posture is still good.

Food technology

Step-boxes may be needed to sit at the tables.

Light weight kitchen appliances will help with their independence with food preparation. Assistance may be needed to lift items in or out of the oven, or with move heavy objects. The occupational therapist will be able to provide advice relating to suitable kitchen equipment.

Design and technology

Steps may be needed to reach DT benches. Suitable tools and appliances should be used when doing in woodwork or metalwork activities. Tasks should be adapted where necessary to make sure they can fully participate.

P.E.

A physiotherapist can tailor the P.E programme to suit your child. They should be encouraged to take part in physical activity. This is beneficial for health, wellbeing and muscle strength. Activities such as ball skills, using the gym, dance and swimming are good for coordination, balance and strength.

Contact us

If you have any questions or concerns, please contact the metabolic bone team on 0114 226 7890 or 0114 226 7885, or email: sheffield.boneteam@nhs.net

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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Sheffield
S10 2TH

United Kingdom

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