Outline for discussion on disclosure in pre-school and primary school children Klinefelter Syndrome/XXY

December 30, 2018 / Comments (0)


Disclosure: If the diagnosis has been previously known and you have only just decided to disclose the diagnosis to the pre-school or primary school it is often helpful to start off the meeting/discussion of why you have only just decided to disclose your child’s diagnosis.

Discuss how (still not mentioning the diagnosis) it is a misunderstood diagnosis and that despite how common the statistic are very few people have heard of it and understand it.

Discuss that you felt that you wanted to see your child’s development and if there were no concerns with their development you didn’t feel there was a need to discuss a misunderstood diagnosis.
Discuss that you have recognised there are some delays or potential delays in your child’s development and you feel that it is necessary for everyone to be on board with early intervention for your child.

What is the diagnosis (Klinefelter Syndrome/XXY)? It is up to the individual disclosing their child’s diagnosis in what terminology and definition they feel comfortable using. AXYS can help in this discussion around terminology axys@org.au

Some potential and common traits of those with Klinefelter Syndrome/XXY:

  • Motor delays (the physiotherapist will outline exercises that can help)
  • Language delays (the speech therapist will outline games/exercise that can help)
  • Learning difficulties (due to motor programming or auditory processing issues)
  • Motor programming issues (need to be aware if the child looks vacant or uninterested it needs to be addressed and the information needs to be taught in a different way)
  • Sensory programming issues (need to be aware that excessive noise and textural aversions may impact on learning and strategies need to be implemented around this)
  • Anxiety: This can be common and is often overlooked as ‘just separation anxiety’, strategies need to be put in place when this is an ongoing concern. There are many strategies available but the referral to an OT trained in the area of anxiety and emotion regulation and/or a psychologist is very important.
  • Attention span: This can be at times lacking, the use of 5/10/15/30 minute timers helps children to have a focus and sit at a task for this length of time.
  • Difficulty interacting with other children (parallel play): It’s important for the pre-school or primary school teacher to ensure KS children broaden their scope of interaction at a young age as they tend to migrate towards one or two children. They need to gradually introduce new students to them and encourage ongoing group work and play with them. This will significantly help decrease social awkwardness and isolation in the future.
  • Tiredness: This is often due to low muscles tone; children with KS get tired more easily than other children and will need a day time nap several months after other children don’t. Signs of irritability, crying and shouting are often indicators of tiredness in pre-schoolers. Accommodating a day time sleep is important but it must be before 1pm and for an hour at the maximum to ensure they can settle and go to sleep at night time. Primary school children should be encouraged to stay awake but take some quiet time reading or working on their work books rather than have a nap.

Spectrum: It’s important to discuss that KS is a spectrum and whilst the above traits are important to look out for some children may or may not have these. Discuss where you think your child sits on this spectrum and that you want them to work with you to indentify if they see any of the above traits that early intervention can be implemented.

Discussing your child: Discuss what your concerns are about your child eg. motor, language, anxiety, other things you may be potentially concerned about

Who is involved with your child’s care: It is important for them to understand that a large team are involved in your child’s care and that if they work together with this team it will make a huge positive impact on your child’s education. List who is involved eg. Paed, Endo, GP, OT, SP, physio, other specialists like surgical Paed. Discuss how they are working with you and your child and what they are doing. Are early intervention services involved? Are they willing for them to come to the pre-school or school? What are the plans for these specialists and early intervention team?

Plan: Discuss your child’s plan and how they can work with you and the health professional team you have on board to fulfil and carry out this plan. Eg. what speech therapy exercise or physio exercises they can do, is there strategies to help with anxiety or helping with any concerns around learning and development?

Ask how they can support your child: To close off the discussion ask how they think they can work with you and the team you have in place to ensure your child gets the best early intervention as possible. Make sure you walk away with a committed plan around this.