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Survey about achondroplasia
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Whether it's kindergarten or high school, it is always recommended that you visit the school with your child when it's a new school that he/she's going to attend and take a tour of a normal school day.

This way you can see with him/her what needs to be addressed, and how it can be changed, given that there are things that can't be adapted. Your child may not feel comfortable with some of the proposed adaptations, which can be left out, if they are not entirely necessary. At all school stages an aide or a helper may be assigned to assist him/her with things such as heavy doors, getting in buses, getting lunch, etc.

School bus small

You can also consult with a physiotherapist or occupational therapist (preferably with experience with children with achondroplasia) before school begins to identify specific environmental changes and equipment that may be needed [1]. Your country's government may also provide help easeing the implementation of the needed adaptations, which you could also look into.

In kindergarten, one of the first things that must be brought to attention are any possible health issues your child may have (such as sleep apnea and recurrent ear infections), especially the ones that require special care (such as operating the CPAP device if the child needs one).

The teachers must also be made aware that motor skills may be delayed in children with achondroplasia, so it will be normal if they still can't walk at a later age, when compared with other children. Talking may also be delayed, and it may be connected to hearing loss due to recurrent otitis media.

Developmental Milestones in children with achondroplasia
Motor skill and language development in children with achondroplasia.
Credits: Trotter and Hall.

It's also useful to make them aware of complications that may arise while in kindergarten/school and inform them of what signs to pay special attention to, such as snoring (if sleep apnoea hasn't been diagnosed), numbness or weakness of the legs after walking associated with bladder/bowel dysfunction (manifestations of spinal stenosis), etc.

In case the child doesn't walk yet, it should be noted that swings without head support should be avoided, and if he/she still can't sit by him/herself, a sitting position should also be avoided and, even if the child can sit, an unsupported sitting position should be avoided, due to  the risk of a fixed kyphotic curve.

In school, steps are usually a good way to solve some issues, such as reaching the blackboard (an extender can be used, such as some used for toileting), the toilet and keeping the legs from dangling off the chair and causing numbness. If it's not possible to adapt a chair, as in the picture below, a cushion for the back of the chair could be useful to allow for back support, since the upper legs are likely too short to allow this (a booster seat can also be used, if extra back support is needed due to kyphosis) [2, 3, 4]. A toilet stall should also be adapted for your child's needs, by placing a step stool to ease his/her access to the toilet and to the sink. Alternatively to a step leading to the sink, a portable bottle of hand sanitizer or wet-wipes can be taken to school or provided by the school.

Besides the short limbs making reaching difficult, the fact that full elbow extension is impossible makes reaching the top of a page on a book a possible challenge, for which ALPE Foundation responded with an idea for an accessible folder, which allows the child to take the pages out of the folder, fold them to work more comfortably, and easily put them back [5].

Carrying books may also present a challenge, especially if a back problem (such as Thoracolumbar Kyphosis) or leg pain is present, for which a double set of books may be acquired, having one in the school and another one at home. A lower locker should be assigned to your child or adaptations should be made to one of the school's lockers (lowering hangers, handles and locks), if they are full length lockers. A friend or adult helper may also be assigned to help carry extra weight when needed and getting into the bus, if the bus step is too high or the curb too low, or walk to and from the school [3]. This helper may also be needed to help open heavy doors, reach handles and light switches that are placed too high (unless they're extended), and help in emergency situations. Other adaptations may also be needed (you or the school staff should go through this with your child and see if there's any obstacle that needs to be removed, reduced or circumvented) [4].

Adapted chair for a child with achondroplasia
Adapted chair for a child with achondroplasia.
Credits: Fundación ALPE.

If your child presents neck instability, a car seat that protects the neck may need to installed in the school bus. This adaptation must also be taken into account when the child goes on a field trip.

Mobility may be reduced, which may require extra time to get to class and physical education class should proceed normally given some minor adaptations (such as downsized equipment and avoiding certain activities) [6, 7]. Hand dexterity may also be reduced, requiring a longer time for written tests, the need for oral tests and/or a recorder to record class, or a computer could be provided for typing during class. An occupational therapist may also be helpful in making writing easier [3].

Materials in and out of the classroom should be within reaching distance for your child whenever possible which may require a multi-step stool, especially in lab classes where most materials must be handled on the lab bench, or lowering objects, such as paper dispensers, mirrors, shelves, etc.

In most adaptations after kindergarten, your child should be involved in choosing what he/she needs. Going through a school day tour with your child can not only help their lives at school easier, but also be a reassurance for him/her to feel safe, comfortable and confidently independent in school.

Sources

  1. Ireland, P.J., et al., Optimal management of complications associated with achondroplasia. The Application of Clinical Genetics, 2014. 7: p. 117-125.
  2. Fundación ALPE. Adapting a school chair. 2012 [cited 2017 13/11].
  3. New England Genetics Collaborative and Institute on Disability. Achondroplasia at a Glance. 2015 [cited 2017 17/10].
  4. Dwarf Parents. Classroom Setup Check off List. [cited 2017 15/09].
  5. Fundación ALPE. Accessible Folder. 2012 [cited 2017 13/11].
  6. Little People of America. School - Which Sports Are Safe For Children Born With Dwarfism? 1993 [cited 2017 18/10].
  7. Genetics Education Materials for School Success. Phisical Activity, Trips, Events. Achondroplasia [cited 2017 18/10].
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