Beginnings Endings and The Elephant in the Room

Guest Blogger: Helen Edgar (Autistic Realms)

Nicola Reekie recently presented a webinar, 'Beginnings, Endings and The Elephant in the Room' for The PDA Space which is available here. Nicola discussed how it is often not just the child in the family that may be Autistic/PDA/ADHD (or any other neurodivergence) as families are often very complex. As parents/carers, we may also be neurodivergent and have co-occurring mental/physical health difficulties; this can make family life a bit of an adventure to try and navigate!

Nicola’s webinar discussed ways to talk about some of the more tricky situations and the 'elephant in the room' using a strategy called PACE. The PDA Space has adapted this model which Dr Dan Hughes, an American psychologist, initially developed. PACE stands for Playfulness, Acceptance, Curiosity and Empathy. The PDA Space has adapted this to reflect the needs of the families in our community and incorporated the idea of 'compassion'. We feel it is important to consider the self-compassion we also need as parents/carers to be in a better place to look after our children and young people.

Multiplex Families

Danielle Jata-Hall (PDA Parenting) coined the phrase 'multiplex families' to describe the many different needs of families that are multiply neurodivergent (where parents/carers are neurodivergent and also their children). This means within a single family you may have many different needs, including Autism, ADHD, OCD and also PDA, to name just a few. It can be difficult and exhausting being a parent/ carer. You may feel isolated and misunderstood and need help figuring out where to turn or what to do. You may feel injustice in how difficult your family life is and feel like others are judging you for having to do things differently. Remember, you are not alone. There is a beautiful community of multiplex, multiply neurodivergent families here with you. The PDA Space supports you and your family through this journey.

We know that having conversations with our children can sometimes be difficult. We will look at PACE as a way to communicate and discuss 'the elephant in the room' and help make those tricky conversations a bit easier, especially around transition times such as the end of the holidays and the start of a new term.

Endings and Beginnings

Holidays can create uncertainty as your usual dependable routines and ways of living suddenly change, as we discussed in last month's blog. You may feel that as soon as you have settled into your new routine, it is time to start thinking about transitioning and preparing for the end of the holiday and another new beginning.

Research from The PDA Society Being Misunderstood in Education report (2018) showed that up to 70% of PDAers are either not in school or struggle to attend regularly.

This may mean that a 'new term' for you and your PDA child is not filled with the excitement of buying a new uniform. Instead, you may feel your family life is filled with uncertainty, stress and anxiety for your child and you as a parent/carer. There can be added stress and difficulties if you have more than one child in your family. One child may have appropriate educational provision, and another may not, or you may have different types of settings and provision going on to try and manage. You may be juggling many different needs and continuing to fight for an EHCP. Siblings may feel it is unfair that things aren’t the same for them, which can create added challenges. Some families opt to go down the home education route, and many other families may be in limbo as Nicola discussed. Many families are feeling stuck, unable to home educate and still not accessing appropriate provision. The PDA Space community understands the difficult paths families have to navigate, and we aim to support you on this journey.

The Elephant in the Room

It can help everyone if you open conversations and discuss difficulties and worries. If you or your child has a PDA profile, it may sometimes feel easier to avoid some topics of conversation and not talk about 'the elephant in the room'. It can feel easier to avoid any potential confrontation or risk further upset, but not talking can create added stress and make that elephant feel even bigger over time.

Everyone benefits from feeling that they are in a safe space and feeling understood. It is important to feel nurtured and for feelings to be validated. It can help to have some of those trickier conversations and to acknowledge when your children may feel upset, angry, disappointed, sad, or frustrated. They may think their life is unfair and may feel very different from some of their friends.

Talking helps, but direct demands and conversations can be tricky, as we know for PDAers! Weaving low-demand chat into play situations and following their lead is a way around this.

Making Family Plans

We want to share some ideas to help make life a bit easier. It can help to plan together as a family to ensure everyone feels they are being listened to and have an input into family life.
Remember, sometimes doing less can be more helpful when you have many different sensory and neurodivergent needs to account for. It can help to PACE everyone's needs and have lots of time around events so everyone has time to rest and recharge in their own way.

It can be helpful for children to have their own planners to refer to; you could use pictures instead of written words or even have a family-shared calendar. The important thing is that everyone feels they have some autonomy, control, and input into their own life, so everyone feels their needs are validated, and they are being listened to.

Planning the bigger and more significant events and appointments helps to prepare for other changes that might be coming up subtly. Even little things like pre-washing the school uniform and hanging it up on the line two weeks before school can help drip-feed the idea that things will start changing. It can be a subtle, low-demand way of casually opening conversations.

It can help to focus on the positives and what is working well when preparing for any changes. If your child has a favourite lunch box/pencil case/coat and their shoes still fit and are comfy, there is no need to change everything and buy new for the new term. There can be an expectation from family /friends and all the advertising in shops to buy everything new for the start of term, but for many children, this can actually add to the anxiety and uncertainty. It may help to have some familiarity by keeping their old comfortable jumper and favourite lunchbox to help them ease into their new class. Other children may want that fresh start of a new beginning; either way, talking and discussing everything together could help. If your child is not able to express their preferences, then it may help to keep some familiar items so they have a slower transition into the new term.

PACE your Family's Needs

It can help to PACE the whole family's needs, be playful, accept differences and validate emotions. Show curiosity with your child and about their needs and give yourself some self-compassion. Showing empathy will help develop even more trust and make those tricky conversations easier.

We know that talking about the 'elephant’ in the room' is never easy. We hope PACE may be a useful tool for you and your family to help your child feel safe and enable ways to communicate those tricky conversations.

Learn more about how to support yourself and your family in our PDA Space Portal for further ideas and support.

Hope to see you there!

Helen Edgar
www.autisticrealms.com