Research has shown that children have better academic and social outcomes when their parents and teachers work together. A positive parent-teacher relationship can result in a child doing better academically, emotionally and socially, being happier at school and attending school more regularly.
Establishing a good collaborative relationship with a child’s school community is even more imperative when you have a child with a condition such as cystic fibrosis (CF). Evidence suggests that due to the great length of time that children and young people spend in school, ‘teachers play a key role in supporting pupils with long-term conditions to manage symptoms, integrate with peers and achieve their academic potential’ (Strawhacker & Wellendorf, 2004). In order to promote optimal health and academic achievement for the child who has CF, parents and school staff need to work together to establish trust and maintain relationships.

The benefits of developing a strong collaborative partnership with your child’s teacher and school community include:
• Relieving some parental stress, particularly around your child’s health. It is not about the school taking responsibility away from the parents, it’s about creating the best environment for the child.
• Feeling confident or trusting that you can approach the teacher or school about the issues relating to your child.

So, how do you go about establishing a collaborative relationship with your child’s teacher and school to ensure your child’s health, social and academic needs are being met and understood?
• Initially, make an appointment with the principal to discuss how your child is affected by CF and what it means for them in a school context. Take documentation with you e.g. information about CF and the latest reports from your child’s multidisciplinary team at the CF Clinic which can be kept on file.

• Make a list of issues or concerns you have which you can share with the principal and/or teacher at the initial meeting.
• Once you and the teacher have agreed on planned actions and desired outcomes, the actions should be reviewed during the school year.
• Take a support person with you if needed.
• Provide feedback to school staff about things that are going well and when things are not working.
• If you are unhappy with something it is best to speak to the class teacher first and then the principal.
(Department of Education, 2018)

To gain a further insight into ways in which parents collaborate with a school community, Helen from Western Australia, who has a son with CF in primary school shared her perspective on the ways in which she has built a relationship with her son’s school community.

HELEN: My son is now in year one, however, when he started kindy I set up an initial meeting with the principal. Every year I have an individual meeting with the class teacher and if possible, with the other teaching staff, such as the music, art, and phys ed teachers. I give the teachers a list of the main things I want them to consider regarding my son’s health needs, and a little background about him. The meeting with the teaching staff takes about 30 minutes. I break it up into what happens before, during and after school. But my main aim is to not make them feel overwhelmed. I want them to feel confident and comfortable with the information I provide them. The teachers have been very receptive to these meetings.

I have also realised that you need to collaborate with the school receptionist and registrar, as well as the deputy. They need to know about my son in terms of whether he needs me to pick him up or not if he is unwell, or if he is ok and whether the school should call me or not. This can be a difficult thing for schools to always know so it is helpful for me as a parent to give them specific details about my son and his symptoms of being unwell.

At the start of kindy and pre-primary, the school distributed a letter that I wrote for the other parents, explaining CF and how it impacts my son, and what would be helpful from them in terms of my son’s needs. I realise, however, that just because this is my issue it is not the other parents issue. They have other things going on, so my concerns will not be a priority to them. I have had to realise that the world doesn’t stop because of my family’s concerns.

The response to the letters I have sent to the parents has been varied, and parents will ask questions which is good, and overall, they have been supportive. I have found I do need to have patience and be diplomatic to establish good relationships and understanding of my son’s needs. I do believe it is a bit of give and take when collaborating with the school community.

The school has also sent out a standard letter each year about minimising spreading of germs in school and keeping unwell children at home.

This year I became a class rep, as I wanted to get to know the other parents and not just have the focus on things only being about CF. I haven’t wanted my son to stand out, but we have accepted that, in some ways, he is different, and we are not ashamed of this.

We are very vigilant about not seeing people who are sick, and we have found that our son’s classmates have been supportive of this. There have been times when they might say something like “I can’t hug you today, I’m a bit snotty”.

We have encouraged play dates but when my son first started kindy, it was half way through the year at the current school he is at, so we didn’t have many to start with. But as time went on we have found like-minded parents and some who are keen to hear about CF and what it means.

When our son has gone on new playdates, we have given the parents a list of things e.g. the CFSmart enzyme bookmark with amounts of enzymes required for common snack foods. I have said to the parents not to panic if our son doesn’t take them when he eats. I have thought about what are the worst things that could happen on a playdate and concluded that nothing is that bad in comparison to the benefits my son will have socialising and making friends. I have been up front with parents and tried to pre-empt any issues.

We have also educated and encouraged our son to look after his health while at school, such as knowing how to wash his hands properly and not sitting close to others who have colds. As he is getting older, I am finding I’m able to let go a little bit.

Something amazing that the school has done is to provide hand sanitiser dispensers in all the classrooms. It first began when I saw a Dettol campaign on television, which was set in a school, and I asked the principal if it was possible to gain funding from Dettol to then be able to install hand sanitisers in the classrooms. I stressed that this would be good for everyone, not just for the benefit of my son. The principal at the time was very open to this idea and must have done some investigating. She didn’t get funding from Dettol but instead used money from the school’s budget to pay for the dispensers and sanitiser (the Department of Education provides funding to schools through the school grant). The dispensers arrived but sat there for a while due to a change in principals. I reintroduced myself and asked the new principal about what would happen with the dispensers. In the end he installed them all himself. There is even one in the library. In some classes, adjustments needed to be made to cater for students who may not be able to cope with the dispensers being in an easily accessible place.The teachers have also put up notes or posters around their classrooms reminding students to wash their hands and to use the hand sanitiser.

My main overall tip for other parents when collaborating with the school community would be to try to see things from other perspectives; think what you would be like if your child didn’t have CF, but at the same time it is very important to advocate for your child’s needs and collaborate with the school community.

References
Bentley, T., & Cazaly, C. (2015). The shared work of learning: Lifting educational achievement through collaboration. Mitchell Institute. Retrieved from http://www.mitchellinstitute.org.au/reports/the-shared-work-of-learning/

Department of Education, Government of Western Australia. (2018). Supporting Children’s Learning. Retrieved from https://www.education.wa.edu.au/web/at-school/supporting-childrens-learning
Department of Education, Government of Western Australia. (2018). Children with Special Learning Needs. Retrieved from https://www.education.wa.edu.au/web/at-school/supporting-childrens-learning/children-with-special-learning-needs
Department of Education, Government of Western Australia. Hand washing and the provision of soap or cleansing agents in schools- best practice guidelines. Retrieved from https://www.google.com.au/search?q=department+of+education+grants+for+hand+washing+facilities&rlz=1C1GCEA_enAU761AU761&oq=department+of+education+grants+for+hand+washing+facilities&aqs=chrome..69i57.45737j0j8&sourceid=chrome&ie=UTF-8

Raising Children Network. (2014). Involving parents in school and child care. Retrieved from http://raisingchildren.net.au/articles/involving_parents_in_school_and_childcare.html

Sheehan, J., Hiscock, H., Massie, J., Jaffe, A., & Hay, M. (2014) Caregiver Coping, Mental Health and Children Problem Behaviours in Cystic Fibrosis: A Cross-Sectional Study. International Journal of Behavioural Medicine. 21, 1.

Shiu, S. (2001) Issues in the Education of Students with Chronic Illness. International Journal of Disability, Development and Education, 48,3. DOI: 10.1080/10349120120073412

Strawhacker, M., & Wellendorf, J. (2004). Caring for Children with Cystic Fibrosis: A Collaborative Clinical and School Approach. The Journal of school nursing, 20, 1