The following is a summary of talks by Natalie Menagh and Lisa Atkin “Parenting Strategies - Early years & Teenagers” at the PDA Society Conference in Birmingham on 18th April 2018
Natalie Menagh – Early years
Natalie started by saying she definitely doesn’t have all the answers and that she and her husband spend a lot of time talking about strategies and are engaged in this continuous process of reflecting and responding to their son’s needs.
Parenting & PDA in the early years
In the early stages Natalie said she had so many questions about her son such as:
- What was wrong with him?
- Why did he do that?
- How could I help him?
- And most often, what did I do wrong in that situation?
She said a continuous frustration was that despite being a professional herself, working with children with additional needs, she still felt completely baffled as to how to help him for a long time.
Looking back with the knowledge she has now she said she can see the signs more clearly for what they were:
- Often people commented on how easy going her son was a baby and how content he felt in his routine
- He would seek their full attention from early on unless he was on the move in his pram or in the car
- He always needed someone to play with him or for him as a form of entertainment rather than investigating things for himself
- His speech and milestones were delayed
- He seemed much more forceful when something bothered him and reacted quite aggressively, often without any build up or warning, and she was terrified he would hurt himself in these moments of frustration
- He resisted being led into anything
When she shared her concerns with friends and others, they would recall similar behaviours in their own children and say “he’s just a typical boy”. She spent a lot of time on websites trying to find solutions, none of which worked, and referred herself to a local children’s centre and read many self-help books as she was desperate to find out what she was doing wrong - so many people were reassuring her that he was fine, she felt it must have been her.
Natalie’s son’s health visitor referred him to a paediatrician and speech & language therapist after his two year check which happened to be on a difficult day for him. However the first paediatrician saw him on a very different day and noticed his good eye contact and his willingness to engage in a tea party game, actually saying to Natalie that ‘if he turns out to be autistic I should go and retrain”. She said it was fair to say they had mixed responses from the professionals involved for quite some time.
She would worry a lot about what others said and although she received a lot of reassurance that “he was fine”, “they all do that”, “it’s just a boy thing” she felt this just made her continually question herself as a parent. Natalie felt that nobody saw what she could see and that she knew something wasn’t right but couldn’t put her finger on what.
Whilst on the journey of trying to discover what the underlying cause of his behaviour was, Natalie said they made important discoveries about what did and didn’t work which really helped them through.
What didn’t work:
- Time-out or consequences of any kind
- Sticker charts
- Visual prompts to remind of expected behaviour – this resulted in him doing the opposite
- Getting stressed and exasperated
- Following parenting advice from well-meaning people
- Questioning their parenting ability
Natalie noted that this all became a cycle of stress and exasperation and questioning everything her and her husband did as parents. This resulted in arguments and although it didn’t happen to them, she pointed out that many families break under that kind of pressure and that it’s so difficult to give due attention and focus to other important relationships in your life when there’s such a lot of worry and concern about your child.
After discovering PDA they started to notice things that really worked. Up until this point she felt her relationship with her son had been really fractious; he often said he hated Mummy and didn’t want her, he only wanted Daddy - this really hurt at the time but looking back, Natalie said she now knows it was because she spent a lot of time trying to win battles whereas her husband more instinctively found ways to distract him and coax him around.
She clearly remembers the first day that she started using the PDA strategies that she found on the PDA society website - she said it was an absolute Godsend, like a miracle and he was so suddenly affectionate toward her and actually said “I love you now Mummy, you’re a good Mummy now” - she said even though he he had only just turned four, he managed to articulate so clearly his delight that Mummy suddenly understood him.
What did work:
- Humour - a good tool which can be hard to use when you are really stressed but can be really effective
- Distraction - can be helpful to avoid stuck thinking when there is no solution to a situation, but she said if there is a solution then you have to use it
- Avoiding crowds
- Routine - can help lessen anxiety but can be extremely difficult to establish. She said routines need to be approached with flexibility and can only be built with her child’s agreement. The routines he sets often change as well
- Familiarity with people and places is key
- Limiting visitors
- Being outside
- Sensory experiences at home
- Engaging in repetition
- Learning to identify the motive behind his behaviour has been the most important thing
Natalie found the book ‘The Explosive Child’ by Ross Greene really helpful in learning how to communicate with her son; it taught her useful ways of finding out what was bothering him without making his behaviour escalate further, and she discovered how important it was for him to feel liked and appreciated even if he had had a meltdown. She said that one of the most effective tools in helping her son was verbal communication - knowing what to say, how to say it and when to say it and this book really helped with that.
Natalie felt that as adults, we often interpret the behaviour of children as we would an adult, which we have to be mindful of and it’s important to step back and think about how their behaviour was really meant.
‘The Red Beast’ and ‘The Panicosaurus’ are two books which Natalie found really useful to read with her son. She also said that books and TV in general are helpful, indirect ways of teaching or getting messages across to him.
Natalie said they have been very lucky with how amazing her son’s school have been, but that she and her husband were determined from the outset to have a good relationship with them and that they were honest with school that as parents they were also trying hard to understand him and didn’t always know exactly what to do. Additionally Natalie said she did everything she could to support the school in supporting her son and provided them with a list of strategies she knew worked at home. She also gave them the PDA Booklet which they have passed on from teacher to teacher and she provided them with a one page profile showing his interests/skills as well as his needs/difficulties.
Natalie also requested referrals to outside agencies and attended multi-team meetings and said it really helped having more people sitting around a table talking about his needs as a team. They also received support from a Home Start volunteer who played with her son after school using PDA strategies which he found very therapeutic and calming.
Even with all the support in place, and with an excellent school and the use of PDA strategies, Natalie said that her son still complains about going to school and there were many meltdowns at one point. She said he seems to have accepted the routine of going to school now but it is tricky and there are days when it is very, very difficult - given the choice he just wouldn’t go, as for many with PDA, home is the sanctuary where anxiety is lessened and they can be themselves.
Natalie said you have to know what to ask for and be really clear about what you want when working with outside agencies – for instance, she specifically asked for play therapy sessions to help her son. She felt that having outside agency involvement can really help and it’s worth contacting the many services as you might find an advocate in one of them.
In terms of clubs/out of school activities, Natalie said that at one time it seemed almost impossible for her son to access groups with other children and it’s still tricky. A lot of thought has to go into the help he’s going to get in these different setting and he often needs smaller groups or 1:1 provision. She shares his one-page profile with the activity provider and has found this helpful.
She uses heavily adapted social stories (eliminating phrases like “I must” or “I should”) with her son to prepare him for what is coming up or what he is accessing and she often writes them with him.
What we have done
Natalie shared some of the things which her son has responded well to and some of the activities which have a calming effect on him, including:
- Visiting animals and nature orientated places - aiming to go later in the day when there are fewer people there
- Horse riding
- Yoga and sensory yoga
- Bedtime routine has been consistent for a very long time and is geared towards being very calm and bringing him down. It takes a lot of time, work and effort to get him off to sleep but it does work
- Social thinking books
- Epsom salts baths and sensory baths – things like freezing LEGO men in ice cubes, food colouring in the bath or a bath bombs can help to get him into the bath.
Things we have difficulties with
Natalie also shared the things they have had difficulties with, including:
- Transitions of all kinds including:
- Moving from one activity he is enjoying to another
- From home to school
- From the house to the car
- From the living room to the bedroom
- Over stimulation - the more people or the more chaos you add to the situation, the more difficult the situation becomes
- Friends - he does have friends but it has been a work in progress. She has spoken to many parents in the class he is in so they are all aware of his needs and difficulties and provides the other children he knows with strategies to use around him so they can understand and support him too. His vulnerability and the fact he is easily led is also difficult.
- Anxiety is always there, it’s a constant feature. However, long-term relaxation provision can really combat this and she said they now tend to see cycles of anxiety and then calmness, depending on the changes that are happening and that this has allowed them to plan things more effectively.
- Anger and aggression
- Impact on siblings
Other things we do
Natalie shared some other things they do which help, including:
- Looking after their own mental health. CBT and counselling have been really useful for her as well as yoga, aromatherapy, taking time, getting outside and mindfulness.
- Loads of anxiety reducing activities throughout the week at home and in school.
- Distraction when he has rigid thinking about something and she said this is where the social thinking books have been really beneficial as they cover ideas like ‘flexible vs stuck thinking’ which has been really helpful.
- Sticking to promises.
- Calendars - by carefully introducing calendars (giving him choice over what to put on them at first), over time, he’s got used to using them and she has been able to slip things onto them which have to be done.
- Using technology to gain his compliance with a transition or a difficult/busy situation - her advice was “whatever gets you through”
- Communication with extended family all the time - being his “interpreters to the world” and constantly explaining to people why he did something and how they can help in the future
- Talking to his sibling to explain his behaviour and also acknowledge her grievance and try and help her to get the things/experiences she needs.
- Getting to the bottom of what’s causing anxiety
- Always trying to be flexible and provide an ‘out’ to new experiences
- Getting him to eat in any way possible - he can choose where he eats and is invited to join the family at meal times but he doesn’t have to. She said, as long as he’s eating, that’s the most important thing.
- Spotting things which cause him a problem and trying to eliminate them – eg. not cooking roast dinners in the house anymore because he can’t cope with the smell.
- Home-school diary with his 1:1 learning support assistant
- Allowing him to lead activities and be in control for a set period
- Reducing sugar
- Listening to nature sounds at bedtime
Natalie concluded by saying “I’m sure most of us feel, having battled for our children for some time, that they’re not wrong or bad or disturbed or damaged but that the world needs changing and we all need to keep doing that a little bit at a time”.
Lisa Atkin - Teenagers
Lisa said that her 15 year old son was originally diagnosed with ASD at age 6 and they went through very similar situations to the ones Natalie described when he was very young. As he got older, school tried putting strategies in place but his behaviour decreased and things got worse at home. Lisa said she was used to her older children doing as they were told and that traditional parenting techniques, such as counting down from 5, had always worked with them but did not with her son Will.
At age 8, ODD (Oppositional Defiant Disorder) was added to his diagnosis but school found very quickly that strategies for ODD not only didn’t work but made things worse. He was out of the classroom and separated from the other children all the time.
Lisa said she was lucky to have a friend with a child who was diagnosed with PDA and who shared information about the PDA profile with her. It made sense and fitted him perfectly and the strategies worked. She went through things with the school and with professionals and eventually they started to agree with her and noticed that the PDA strategies helped too.
She said the way they did everything as parents had to change and they had to adapt their attitudes and the way they thought. She researched as much as she could and found that the more she learnt, the more she could adapt how they did things as a family and the better things became.
Same boy, different view point
Lisa showed the slide above (shared with kind permission from Lisa and Will). On the left are some of the things which have been said about her son - she called this a ‘distorted view’. On the right is a list of other descriptors which she sees in her son, with a ‘clearer image’. She explained that he can be all these things but that you need to look at the factors in between, the things that cause the behaviours. When you do this and challenge how you are seeing things, you can form a more balanced picture of your child.
Parenting a teenager is challenging
Parenting a teenager with PDA increases those challenges
Speaking from her own experiences, as well as the experiences of the families she has supported, Lisa said that they have had to learn to think outside the box and to accept that what works for one person isn’t going to work for another.
Another key point was not to try talking to your child when they’re in meltdown, because they aren’t able to be receptive, but that having appropriate strategies in place can reduce the frequency and intensity of meltdowns.
‘Pick your battles’ became the top parenting motto Lisa lived by. She said you need to ask yourself if something is really important/matters and that it helps to think about who it is important to and why?
Lisa pointed out that it’s important to understand the child’s perspective. It can be difficult when you interpret the situation very differently to the child, but acknowledging how the situation is perceived by them can sometimes mean the difference between a meltdown and being able to find a solution. She emphasised the importance of validating your child’s feelings and shared the quote “Underlying conflict is not as much the need to be right, but the need to be heard and validated. Conflict ends when true validation begins”. On a practical note, Lisa recommended asking a child ‘what’s happened?’ as being more effective and validating than asking ‘what’s wrong?’ which can lead them to feel that something is wrong with them.
School - a very difficult environment when we need to be in control
Lisa said that school is a very different environment to home. At home children have more control over routines, the number of people at home is far fewer and it’s far simpler for parents to ‘allow things to go’ at home than it is for a teacher in a classroom environment.
She said she tries hard to maintain a good relationship and work collaboratively with school. As well as a list of strategies which help her son, Lisa and her son worked together to include a list of his difficulties on his ‘pupil profile’ so that all staff members could be fully aware. Lisa feels that she has been lucky that her son’s mainstream school has been very supportive, and that because of the strong relationship/ communication between home and school there has been flexibility in the implementation of behaviour policies.
Lisa recommended using ‘collaborative parenting’ techniques and said that this approach works well not only for her son with PDA but also for her other children. As a parent she has open and honest conversations with her children and:
- Looks at problems and what caused them
- Thinks about whether it actually matters - does she let it go?
- Asks open questions such as “what happened?” to understand her child’s point of view
- Gives her opinion and her point of view
- Invites her child to think of a way to work together to make this better
Lisa shared the following links about the different parenting methods she uses, all of which encourage working with your child and giving them an element of control. She has found that this approach has helped her son to be able to make better choices for himself and also reflect on situations to see where he could have possibly behaved differently or explained things differently so that other people were better able to help him:
Lisa said it’s OK to parent differently, and that one of the biggest steps she ever had to face was deciding to let go of traditional parenting and to think outside the box and give different approaches a go. Looking at individual needs and working together has made such a difference to her whole family and has helped convince her that she is doing the right thing for her family, regardless of what others may think.
Lisa finished by sharing the quote “Parenting is like trying to stand up in a hammock and not spill your lemonade” and added “It is difficult, forgive yourselves, give yourselves a break. Make time for yourselves, we do need to de-stress, we need some time for ourselves so we can keep doing this. It is exhausting.”