Life with PDA…

Our FamilWelcome to  our life…

My name is Julie and my husband is Neil.  We’ve been married for just over 7 years.  We have four children, Kim (16) and Jordan (13) are from Neil’s previous marriage and jointly we have Jack (6) and Lily (2).

When Jack was born, there had been a difficult pregnancy and an extremely long labour.  In addition there were some complications at the birth, however he appeared to be a normal, healthy baby.  In fact, Jack developed quickly and appeared to be bright and ahead of many of his peers when it came to developmental milestones.  By 18 months of age, we assumed that the ‘terrible twos’ had kicked in, as Jack became very demanding, restless and his behaviour incredibly challenging.  As a first-time Mum, I just assumed that I wasn’t up to the job and envied other Mum’s who could put their child in a supermarket trolley and browse the store, or enjoy a coffee or meal out with their child in toe.  Visiting toddler groups became a nightmare as Jack didn’t want to play quietly like the other toddlers, he would either destroy other children’s games or activities or run around like a mad thing!  We soon felt alienated and just stopped socialising.

After just a few weeks at nursery, the manager approached me and asked whether she could start making notes ready to have Jack assessed by professionals at the age of 3.  She felt there were some behavioural issues that needed looking at.  To be honest, I was quite relieved that other people were experiencing the problems too and that it wasn’t just down to my inexperienced parenting skills.

Before long, Jack was being assessed by various health professionals including a speech and language therapist, child psychologist, educational psychologist and paediatrician.  As a parent, I was also sent on various courses including “The Parent Puzzle”, aimed at teaching strategies for managing a child’s behaviour.  I found my courses frustrating as other parents were reporting good progress and I was finding that none of the techniques were making much difference to Jack.

Eventually, aged 3 years and 11 months, we were called to a meeting where Jack was given a working diagnosis of Asperger’s Syndrome, a condition on the autistic spectrum.  At this time, my world fell apart.  I was heavily pregnant, emotional and the diagnosis came as a bit of a shock.  I had ruled out autism a number of months previously as a quick look on the internet had suggested that autism meant that Jack wouldn’t make eye contact or engage in pretend play (both of which he did).  What I hadn’t appreciated was that there were different forms of autism and a huge spectrum of varying symptoms/traits.  What had confused me was that Jack appeared incredibly intelligent and I had assumed that children with autism had learning difficulties.  In fact, on assessment, Jack was showing that he was about a year ahead of the average child when it came to learning ability; however he was behind on social skills.  Whilst he could communicate, he struggled to read facial expressions and understand feelings and emotions and he couldn’t work out friendships.  Whilst he longed to be popular, his boisterous behaviour often frightened other children who shied away from him.  He also stammered, particularly at times of high anxiety.

As soon as we got home from this diagnosis meeting, we trawled the internet and ordered a library of books to get as much information as we could.  Whilst much of the material on Asperger’s Syndrome matched the behavioural traits we were experiencing with Jack, some of the list just did not fit.  Various help was called in to the nursery to advise staff on how to work with Jack.  Strategies such as a visual timetable and planners were introduced, as we were told that autistic children need routine and structure to keep their high levels of anxiety at bay.  Jack was frequently having total meltdowns and biting, hitting and injuring others around him.  He also had no interest in potty training and his sleep routine was extremely erratic.  His diet was very limited as he refused to eat any fruits or vegetables and was not keen on meat, fish or poultry.  He favoured retaining his baby bottle with milk.  Trying to brush Jack’s hair or teeth, or shower him was a nightmare – he’d kick and scream – our neighbours must have thought we were trying to harm him!

Jack also became very obsessive, finding it difficult to differentiate between cartoon characters and reality.  He quickly latched on to the latest film character such as Lightning McQueen, Wall-E and Ben 10 and became the character, living and breathing its every move and impersonating.  He could recite film scripts word for word!

After a while, Jack decided that he did not like the structure that pre-school were putting in place for him and took to tearing up planners and schedules.  He did not like being told what order he would do activities and preferred to choose his own.  In fact, this was very typical of Jack in every way – whatever he did had to be of his choosing and on his terms otherwise he would become very angry and aggressive.  He struggled to sit still and keep quiet when the nursery staff tried to read a story to the group, Jack wanted to be the centre of attention and would make noises or do things to distract the other children.  He was unable to participate in concerts and sports day as the anxiety levels were too much for him to tolerate and we were nervous of ‘what other parents might say’ when they saw his frequent meltdowns and inability to participate alongside others.

Within 6 months we were called to a further meeting where the health professionals suggested that Jack’s diagnosis be changed to Pathological Demand Avoidance Syndrome (PDA).  They explained that this was a relatively new ‘label’ with very similar traits to Asperger’s Syndrome, but where the person is so highly stressed that anything that they perceive to be a demand on them (a simple request to fetch a toy or eat a meal or go to the toilet) is too much to tolerate and the anxiety results in a behaviour, be it avoidance or anger.

Jack became aware of my pregnancy fairly early on, as his boisterous and often aggressive behaviour became a safety issue.  Help was provided in the form of a family support worker who visited on a weekly basis to help prepare Jack and alleviate anxieties.  The new baby’s safety and well-being was a major concern.  At one point he was very vocal about his disapproval and told me he wanted the baby to die.

It became very evident that Jack was becoming noticeably ‘different’ to the other children at nursery and the lack of party invitations and social opportunities upset me.  Jack was frequently excluded and parents were keen to withdraw their children from his company.  The nursery expressed concerns about Jack’s ability to cope with mainstream support without some extra help, so we embarked on a 6 month journey to get a Statement of Special  Educational Needs so that when he began infant school, he would have a dedicated teaching assistant.

During the last few months of pre-school we had a very difficult time.    Lily was born in April 2009 and fortunately I was able to give birth much more easily without any pain relief and get home the same day so that Jack would not notice any major upheaval by me being away from home overnight.  We worked hard to ensure that Jack was supported through this transition process and learned to accept his sister and the moment he met his new sister, she presented him with a Nintendo DS!  Jack was quite impressed.  Lily could never be left on her own in a room with Jack as he could not be trusted not to tip her cot or hurt her.  Breastfeeding was curtailed very quickly as Jack was using this time when I was occupied to destroy the house.  It seemed to be a battle of attentions.

We never kept Jack’s diagnosis a secret, in fact we openly told other parents in the hope that they would be less judgemental of Jack’s behavioural difficulties.  Whilst a number of parents were very supportive, sadly a significant number failed to understand or accept and chose to alienate us.  Their children were instructed not to play with Jack and in fact they campaigned to stop him moving to the mainstream school and certainly did not want their children to be in the same class as Jack.  One mother told me that Jack would ‘always be the underdog’ and that I was being ‘grossly unfair to the other children to put him in a class alongside them’.  At a time where I was feeling low, had a newborn baby, was coming to terms with the fact that my eldest son had a life-long developmental difficulty and coping with lack of sleep and challenging behaviour, I could have done with support and understanding, but the added stress of other parents made me feel unwelcome and eventually I sought help from my GP for depression.  Just going to pick Jack up from pre-school should have been an enjoyable social moment in my day, but instead, I was nervous, uncomfortable and stressed about the comments I would be greeted with and the news from the nursery – who had Jack injured?  What had he broken?  What had gone wrong?  I couldn’t get home fast enough!

During the summer holidays before Jack was due to start school, I was very concerned that he was still in nappies and finding life very difficult to manage without temper outbursts and hurting others.  In fact, it was only a couple of weeks before starting school that we managed to get out of training pants and into proper underwear, although the toileting accidents were frequent.  There had been little improvement in his diet, so I opted to send Jack for school dinners in the hope that he might eat better if he saw his peers tucking into proper hot food.

Starting school was perhaps easier than I had envisaged.  Jack had very understanding teachers and a dedicated teaching assistant and life in the Reception class seemed very flexible with lots of play-based learning.  Jack thrived.  He had choice, was intelligent and able to progress quickly.  There were still areas of difficult with appropriate behaviours, diet and toileting but with regular reviews we muddled through.  We noticed that after a school holiday, Jack found it extremely hard to settle as his routine had been disrupted.  Christmas became a nightmare – Jack couldn’t handle the excitement, preparations, planning and again change of routine.  From the spring term onwards, things started to spiral downwards and Jack’s needs became more evident.

By Year 1 at school, structure had crept in and learning was much more formalised.  There were timetables and lessons, a requirement to sit and listen and participate at desks.  Jack had a new teaching assistant and a very understanding classroom teacher who was also the school’s SENCO.  They did everything they could to help but Jack’s difficulties were becoming more and more challenging.  He became sensitive to noise in the classroom, he found the environment distracting.  He regularly soiled himself and became embarrassed to tell anyone.  He was refusing to eat school meals so was feeling ravenous, and hunger worsened his behaviour.  The school called in other experts and various strategies were put in place.  He embarked on a Lego Therapy programme which he loved to begin with, but quickly grew tired as he felt the other children could not keep up with him and the models were too basic.  Eventually, a decision was made to withdraw Jack from the classroom and teach him in a corridor on his own.  We appreciated the reasons for this, but did not feel comfortable with this exclusion.  We had also been told that Jack would not be able to fully access the curriculum so his learning may suffer.

Within weeks, Jack was becoming more and more difficult to manage, both at home and at school and he was hardly sleeping.  In school, he was reliant on his teaching assistant taking him outside and adapting learning so that he could do maths by bouncing a ball in the playground or playing hockey.  He visited the Reception class to help out and do jobs, but we were concerned that his learning was stagnating.  The school, despite their best efforts, were not experienced in autism and the management strategies and with large class sizes, were unable to flex teaching approaches to meet Jack’s needs.  We also received a second diagnosis of ADHD, which was no surprise!

In June 2011, we took the decision to find Jack a place in a specialist school nearby and he will be starting his new educational journey in September.  It was a big decision as it needed my acceptance that Jack’s needs were sufficient to warrant a move from mainstream school – I guess in the back of my mind, I’d always hoped he’d ‘grow out of his problems’.  On the plus side, I felt that the staff at the specialist school would be totally used to managing behavioural difficulties and with much smaller class sizes, they would have the ability to develop Jack in a more relaxed way, alleviating some of his anxiety.  The other major ‘plus factor’ would be that other parents would understand – we’d all be in the same boat and supportive.  I wouldn’t have to be constantly apologising or feeling isolated.  In fact, it could be an opportunity to feel part of a new autism community!

Without releasing, we’ve adapted our life to fit around Jack.  We know that taking him to a restaurant or supermarket is a no-go.  It’s not worth causing him (or us) undue anxiety so we opt for home deliveries or choose to shop when he’s at school.  We avoid situations where we know Jack will struggle.  Neil and I have to go to bed early at night because we know we have to grab sleep when and where we can!  We appreciate that we cannot live our family life like others, we can’t be as spontaneous as we’d like, and we can’t just call in a babysitter or leave Jack with a friend.  We can’t easily holiday, as the change or routine is just too hard – it’s almost more relaxing to be at home!  Mealtimes can be ‘different’ – Jack struggles with the demand to sit at a table.  We accept that Jack can’t tolerate certain foods – whether it’s texture, psychological or pure demand avoidance we don’t know, but it’s not worth putting undue pressure on him.   We know that Jack finds it hard to sit still or concentrate for long periods, so trips to the cinema or theatre can be disastrous and formal situations such as weddings, church services and parties are often not worth the battle!

Earlier in the year, in an effort to do my very best for Jack in terms of parenting him and understanding his needs, I embarked on an Open University course on ‘Understanding Autistic Spectrum Conditions’ which really helped me to appreciate the diagnosis process that we’d gone through and the reasons why Jack behaved the way he does.  I felt passionate about trying to make life easier for children and adults with autism – society seemed to be very intolerant and as a parent, I felt it my duty to pave the way for a brighter future for my son and others like him, so in June, Neil and I set up “Special People”, a support and social group for parents, carers, teachers and health professionals – anyone with an interest in autism.  We were staggered by the interest and our first event was attended by almost 200 people!  It just demonstrated how many people in our small town in England were affected by autism, and I guess this was just the ‘tip of the iceberg’.

As Lily grows up, we’ve got to try to ensure that she gets equal attention from Neil and I.  It is so easy to focus on Jack’s needs and overlook her.  She’s now two years old and her behaviour is now becoming quite challenging too.  We often wonder whether she is learning behaviours from her brother or whether she too will have a diagnosis.  It’s too early to say, but whatever happens, we’ll cope!  If I did have another child with autism, then so what?  I’ve got the t-shirt and I’m getting used to wearing it.  In fact, I’m sure in time it will become comfortable.  Kim and Jordan, who stay with us alternate weekends, found it very difficult to live alongside Jack initially, but over time, have learned to understand and appreciate Jack for who he is.

I’ve come to realise that life with Jack will always be a challenge, but the challenges are just phases and they come and go!  It’s up to me to work hard with Jack to help him with his difficulties, to be there for him, to reassure him, to fight his corner and to offer him the very best opportunities that I can find for him.  Yes, he has a ‘label’, but he’s still my son and nothing will change the unconditional love that I have for him.  In fact, perhaps the label gives up the key to open up the appropriate support that Jack needs.  Without a diagnosis, I’d have been blaming myself for my seeming inability to manage my child and I wouldn’t have accessed the support from a team of professionals in the local area and I would certainly not have had the opportunity to connect with some wonderful people via various courses, support groups and social media.  Entering the world of autism has taught me about difference, needs and strength.  Everyone is different, in fact I now question ‘What is normal?’ and if autism is a spectrum, I believe life is much brighter in colour.

 

Julie Thomas
September 2011