Listen ... how to include Parents of SENd learners

Cat Jolleys   catjolleys.com

Post pandemic, we were noticing an increase in the numbers of children presenting with social communication difficulties, at my school (a large, diverse inner city Manchester primary, with high numbers of asylum seekers and international new arrivals).  

This trend wasn’t unique to us, I discovered following discussions with other Manchester SENCos and CAMHs professionals on the Autism diagnostic team. However, our cohort posed me (as SENCo) an additional challenge in the sense that so many of these children had parents and families who were hesitant, unsure or even resistant to pursue a diagnosis for their children or were reluctant to discussions around the barriers to learning or socialising, their child faced in school.  

As an experienced SENCo, I wasn’t unfamiliar with this dynamic. As a parent of an autistic son, I was once that parent too! Plus, some of these parents had the additional challenge of being newly arrived in the UK and all that comes with that; finding housing, jobs, schools, registering with non-existent dentists, settling their children into schools, trying to create a network and friendships - all in a new language and alien culture and systems. For some families, to be then invited into school and hear that your child may be facing some social communication difficulties at their new school and even a description of their child possibly having SENd, the resulting stigma and fear was overwhelming for them.  

After several unproductive meetings with parents who were heavily affected by the stigma around SENd in their culture or own upbringing/schooling and a lack of understanding of what a possible diagnosis and access to support and other services, could bring to help their child, I felt stumped. So I turned to Tricia, my EP (educational psychologist) in school and asked for her advice. After we identified what this barrier was (stigma, shame, fear and perhaps a lack of understanding of the benefits of diagnosis longer term) we decided a way to reduce some of these barriers was to invite these families into school and offer them a non-threatening, information session (with the unspoken agenda of them connecting with other parents facing similar journeys with their own children and therefore, hopefully feeling less alone and less fearful of school and our work).  

We needed to plan this meeting through a trauma informed lens ie. make it as welcoming, non-judgemental and inclusive as possible. So, we first addressed the language barrier and specifically invited Arabic speaking families (we were lucky enough to have a talented, empathetic and well respected Arabic speaking TA on our staff to interpret) so that parents and carers could feel comfortable talking to each other in their first language and could hopefully connect with other families they were already friendly with, but perhaps unaware they both had children with similar challenges around their social communication.

We invited around 20 families and, to our delight, over 14 families turned up. We had planned to hold it in the library (intentionally, as it was smaller, carpeted, comfy chairs and less threatening) but our large numbers meant we had to decamp into the less welcoming hall. The biscuits just about stretched around and the presentation Tricia and I had planned was soon abandoned, as we realised our need to illustrate some positives of Autism and the support we can offer in school, was far less important than the chatting, building relationships and sharing of experiences that organically began to happen.  

As Tricia and I stopped talking and began to listen (using our fantastic interpreter) we soon learned there were common themes which caused families challenges at home eg. sleeping, food sensitivities, sensory challenges and the sometimes challenging behaviour which ensued when they didn’t know what their child’s unmet need was, never mind how to meet it, and the isolation experienced when you see your child not progressing at the same rate as their peers.

Tricia and I stood back and realised the facilitating of this event and the bringing together of these (mainly) mums was overcoming so many hurdles in itself. We then knew we needed to offer further sessions to deepen these women’s understanding of each other and their shared concerns, as well as offering practical support directed by them and their needs.  

The next day I was ringing the school nurse at 8am asking what sleep clinic and eating resources they offered and had booked in a session for 2 weeks later, by the end of that next morning.  

We went on to have over 6 of these sessions and the friendships, support and empathy developed between these women, as well as added trust and reduced fear of school and what we were trying to achieve, was huge.  

I was able to have so many honest and frank conversations with families about what a diagnostic pathway might look like, what it would entail and how it might benefit their child in the shorter and longer terms. I was given permission to apply for a diagnosis for several children and was, at least, able to start the dialogue with others who were more reluctant. 

In summary, I’d say a relational, trauma informed and respectful way to include parents of SENd learners who may have cultural resistance or fears around their child accessing support or diagnosis is: 

• Stop talking at them and start listening to them. Don’t assume you understand the stigma or fear. Hear what their concerns are. They won’t all be the same.  
• Narrow the empathy gap with lived experience. My ability to share their concerns pre-diagnosis and then to share how my own son’s diagnosis and support have benefitted him over the years, was priceless and made so many parents feel safer with me.  
  
• Don’t underestimate how lonely it can be to parent a child with SEN or additional needs and how getting those parents together to share their worries, can make all the difference to them.  
• Listen to what support and advice they want - don’t assume you know. We never could have realised they would all want advice around sleep, but that was the no.1 topic. After all, we all need our kids to sleep!  

Cat Jolleys   catjolleys.com