There is a common misconception from both the general public and many professionals that a child with PDA is simply a naughty, strong-willed child that is hell-bent on getting her/his own way and that PDA is just an excuse for ineffective parenting. I thought that I would use our recent trip to Blackpool to try to emphasize that there is so much more to PDA than simply not doing as you are told.
Our Mid-week Break To Blackpool
On Monday we made our yearly trek to Blackpool for a few days away, which is what our yearly holiday has now been whittled down to. Instead of booking into our usual haunt which is a lovely site a few miles outside Blackpool in a two bed-roomed bungalow I have booked us into a hotel on the front. The reason for this is to try to provide myself with a proper break instead of a self catering bus man’s holiday and to reduce the amount of money that we spend on car parking by having to travel into Blackpool and park up.
Many moons ago when Mollie was just a wee little thing we could, just about, manage a trip to France. The travelling became too much for her to cope with and to be honest we found it very difficult to keep her entertained. So, we began holidaying in this country because of a) the shorter travelling time and b) the greater variety of family activities that are available in the UK due to our unpredictable weather. A holiday that is centered around hot weather, pools and beaches is just seen as plain boring by both of my children.
Within a few years travelling from Stoke to Devon became too much of a jaunt and often involved very dangerous behaviour during the journey. Removing her seat belt or attacking her dad, who would be driving, while we bombed down the motorway became a regular occurrence. She just couldn’t cope with sitting for so long even though both of the kids had their own portable dvd player to watch. I hasten to add that this was before the days of Ipads and super-duper all singing, all dancing mobile phones.
So we had to have a rethink on our destination and for the past three years we have successfully enjoyed one week trips to Blackpool. This year I cut it down to a Monday – Friday short break because I honestly didn’t know how I was going to fill the days up because we have done it all before, twice in fact !!
The Build up to the Big Day
- About one week before we were due to leave the anxieties began to rise within Mollie.
- She became very demanding, even more short-tempered and needed much more one on one interaction.
- The recent improvements with teeth-brushing came to an abrupt halt.
- Her newly improved sleep pattern went completely out of the window and once again we began experiencing complete refusal to sleep. She was awake all night and sleeping for most of the day.
- Her need to control stepped up a notch and she would make a point of interrupting my actions with people that she wanted to leave the house.
- The plus side to all of this is that her ability to understand her own feelings and behaviours is continuing to blossom. “I’m stressed out and nervous about going to Blackpool” she informed me, “I’m excited but nervous too” that is why I can’t sleep and so on.
The Big Day Arrives
- Mollie stayed awake throughout Sunday evening and the early hours of Monday morning, I am guessing that sleep finally arrived for her at about 7.00am.
- We left her in bed until the moment when we were due to leave. She had, through control of her sleep, avoided what would have been a very manic time of the day for her. The build up on the day of loading the car and the waiting around for us to be ready to leave is just the sort of cocktail to send her into manic mode. The more manic she becomes the more difficult we find it to cope with when we are trying to sort other things out.
- This way was much easier, we simply scooped her up when it was time to leave and put her in the car. Mission accomplished and everyone was happy.
- We arrive in Blackpool and for the first time ever the weather is nice and sunny and so we can treat Mollie to a day on the beach. She loved swimming in the sea but even now at the age of nearly ten she is completely and utterly unable to occupy herself at all.
- Thank goodness that Jake is now old enough to go with the flow with Mollie and to not need to have his needs also met. Balancing this when he was younger was nothing short of a nightmare but thankfully he has now become a huge help with Mollie.
- She demanded that we all went into the sea regardless of whether we wanted to or not. Jake and I offered but this was not good enough and Lee had to go in as well.
- She had a great time and was blissfully happy as long as someone was playing with her. Once we had all had enough she was bored and wanted to go back to the hotel.
- We had tea and then she wanted to go back to the room to watch her IPad in peace and quiet. She didn’t want to watch it in the bar area so that I could chill with Lee and Jake. Off to the room we trotted. Her Ipad appears to be a replacement for Blueberry Bear, an inability to entertain herself for more than a nano second and lessons the need for her to have constant attention from people, it is the one and only thing that keeps her occupied and appears to remove the need to dominate our interactions with each other.
- Her anxieties are still high which is, I think, reflected in her inability to go to sleep. I would hazard a guess that Mollie did not go to sleep until at least 4.00am.
- Nice day again and so Mollie wants to play crazy gold and then to go back to the beach which we duly do. It is just too cold for me to even think entering the sea and Lee and Jake begin a kick about with the football.
- Que problems, I can’t keep her attention focused on anything above five minutes and she will not engage with me in making sandcastles. She wants to go into the sea and she cannot cope with the thought of not doing it and she is unable to fix her mind on doing anything else. Of course she is perfectly free to go into the sea but that isn’t an option because she is unable to occupy herself in the sea and so it requires someone else also going in with her. At the moment it is just too cold but we promise that we will go in with her later. This requires waiting which again is not something that Mollie can easily achieve, everything has to be instant.
- She decides to go on the pier and spend some money, which I do with her, but within ten minutes she is bored again and wants to go back to the beach.
- Back on the beach nothing will do until we have all being in the sea with her. Knowing that trying to dodge the issue will bring us nothing but a day of strops we brave the wind and go in the sea with her. Now she is happy for a while phew!!
- In the evening she wants to go to Coral Island to have tea and play in the arcade and so off we trot. She has become fixated on winning a teddy bear that will require probably 10,000 ticket wins. It will probably cost us about £50 to win her a £5 teddy but at least the time she is playing to win tickets affords us a little break.
- Disaster her portable modum for her Ipad fails and so she has nothing to keep her occupied while we have our meal. She spends a large portion of this time sitting under the table and I feel that our time here is limited.
- To make matters worse the lady at the change till requested that Mollie say ‘please’ when asking for change which has really flipped her out. She remained calm with the lady but she is now fuming and we are bearing the brunt of it.
- “I want to go back to the room, now!!” she exclaims and so I leave with Mollie while Jake and Lee continue with their food.
- We eventually get back to the hotel and she just makes a bolt for the room. I did request that we sit in the bar where she could watch her Ipad as the hotel had free wi-fi because I was in desperate need of wine.
- Nope it was no good and up to the room we trotted. So the first night of our hols and I had been in a hotel room from 8.00pm onwards and now on the second night I was destined yet again to be in the room all night.
- Luckily when Lee and Jake arrived back Jake said that he was happy to stay in the room and so I was allowed down for a wee drink or two.
- We are off to the ‘Pleasure Beach’ on the day that Mollie has chosen.
- All goes well and we have a good day.
- Mollie isn’t as excitable as usual which is probably down to the fact that the novelty of the ‘Pleasure Beach’ may have worn off.
- She avoids going on many of the rides that she usually loves, possibly due to the perceived demand that we will be expecting her to go on them, and so we split up for the afternoon section of the day so that Jake and Lee can do the other more daring rides.
- Mollie spends the whole afternoon in full role play with a cuddly ‘Gromit dog’ that she has purchased from the gift shop at the end of the new ‘Wallace and Gromit’ ride. MMmmm I thought that me spending my time with my daughter interacting through a stuffed toy were over. Is this a sign that anxieties are increasing?
- As soon as we got back to the hotel we needed to get changed and straight back out to watch a magic show that I had booked, solely for Mollie because she loves that kind of entertainment. We had been late getting back to the hotel due to a delayed tram.
- Que anxiety spike “I’m not going, book it for another day, I’m too tired, I can’t do anymore walking, I’m not getting changed” this came as no surprise and I fully expected this reaction as she had not had time to calm down from the ‘Pleasure Beach’.
- We offered her the choice of staying in with Lee or coming along if she wanted to but that I would still be taking Jake.
- Reluctantly she agreed but she now needs her IPad on to even walk. The signal had disappeared the night before and the modem still wasn’t working que Ipad and modem being thrown on the pavement in anger.
- She required constant, careful handling from Lee just to get her to the venue, quite honestly I had, had enough and walked with Jake.
- She loved the show and thanked me for taking her, we had chips on the front and caught the tram back. She retired to her room with Jake and Lee and I crumpled up in a heap exhausted.
- Mollie had wanted to go swimming but then she didn’t, we’ll go tomorrow she said. I just want to have one day of the holiday watching my Ipad and staying in the room.
- Ok that’s fine but Jake can’t stay in all day and so you can stay in with your dad and I will take Jake to the Tower.
- Ok I’ll come as well she reluctantly said, we had managed to fix her modem and so we were happy that she would be able to still watch her Ipad.
- She was totally bored and out of sorts at the tower and hungry and so we cut our visit short and headed off for some lunch.
- Que disaster, her Ipad had not being fully charged and it ran out while we were waiting for food. With no Ipad we had no distraction for her and she wanted to immediately leave.
- I dashed out of the pub and found a pound shop, thank God for ‘Pound Land’. I quickly stocked up on colouring pens and books and returned to the pub.
- This managed to pacify her while we ate our food but as soon as she had finished she wanted to go back to the hotel room. i hasten to add that it was as soon as she had finished her food, waiting for anyone else to finish was not an option.
- Lee took her back and I spent a nice afternoon with Jake.
- We had a restful evening in the hotel room and ventured down to the bar for a bite to eat at tea time. Mollie managed this accompanied by her Ipad and ate her tea but she quickly wanted to return to her room.
- Today is our last day and we usually spend the day in Blackpool and then return home in the evening.
- She really struggled at the breakfast table today and kept insisting that Lee play role play with ‘Gromit’ during breakfast. When Lee commented that he wanted to eat his breakfast first she shouted at him to ‘shut the hell up’ and threw ‘Gromit’ at him.
- Mollie wanted to go swimming, then she didn’t, then she wanted to go on the pier and then she didn’t, then she declared that she wanted to play crazy gold and go to Coral Island to win the teddy that she had seen the other night and then she admitted that she just wanted to come home and see ‘Rosebud’.
- So home we came and Mollie spend the day on her computer with her Ipad simultaneously playing while colouring in picture after picture.
So in summary what have I learned during our mid-week break
- Mollie’s ability to cope in the outside world appears to be dwindling and even a short break Monday – Friday now appears unobtainable. The novelty of the beach carried us through the first two days, the ‘Pleasure Beach’ just about kept us going for the third day but by the fourth she needed to retreat back to her routine of Ipad, colouring and to be cut off from outside influences.
- Even though she is perfectly used to Blackpool and with her family with complete control over what we did and when we did it three days was all that she could cope with.
- She has no ability what so ever to entertain herself for even two seconds and still needs constant attention and interaction with someone at all times unless she has her Ipad with her.
- When her Ipad was unavailable she either regressed back to role play with her new friend ‘Gromit’ or needed to go back to the room.
- As the days progressed none of her calming strategies appeared to work, one to one interaction, role play with Gromit and even the Ipad did not appear to lessen her anxieties and she required the quiet retreat of her room.
- I can only ask myself if holidays are, for us, a thing of the past. If she can’t cope for more than three days of external exposure without the need to retreat and request home then how would she cope with a weeks break let alone two.
- If we do go away again I have definitely learned that we need the freedom that a caravan, bungalow or a lodge offers. A small hotel room was just too stifling due to the amount of time that we spent in it. We also need a new venue that will offer a much-needed novelty value for Mollie.
- Mollie appears to be unable to form any type of typical social interaction or communication with any of us. Is this why she spends all of her time either in role play, telling tales of fantasy or watching her Ipad? Her impairments run much deeper and are much more deeply rooted than the surface sociability that she can produce would lead others to believe.
- This is the easiest break that Lee and I have ever had with Mollie. We have not had any meltdowns or violent outbursts because Mollie has learned how to control these and we have learned how to avoid provoking them. We are also able to allow her complete control of everything that we do which is something that you can’t do with a three-year old.
- Jake’s maturing years and attitude mean that we only have to think of one child instead of two. His willingness to look after Mollie at night and to try to entertain her during the day was a huge help. In years gone by we would have had two of them having strops.
The break is tinged with sadness at seeing the rapid decline in Mollie’s ability to cope with typical life even when we are with her. She had always, in the past, presented to me as a typically developing child but with huge behavioural issues. I knew that the autism was there but it was so well camouflaged by the external presentation of PDA that I didn’t really notice it.
The behavioural issues, due to the amount of control that we have given Mollie, have slowly over the years disappeared but so has the outwardly, or so it would have appeared, typically developing child. The autism that lies beneath is now very obvious and she is outwardly very different to other children of her age. Her impairments in social and communication skills are now glaringly obvious because her development in that area appears to have stopped from around the age of three or four. The older she gets the more the gap between her physical and mental age, in relation to appropriate interaction skills, appears to grow.
I love Mollie with all of my heart which is why the I am finding this latest realization difficult to not get upset about. I suppose that this is just another step to take in the process of acceptance that my daughter is very different from her peers and always will be. I could cope with this fact so much easier if the condition hadn’t robbed her of so much, she can’t even enjoy doing things that she desperately wants to and I know that she really struggles with her own internal happiness and acceptance of who she is.
Julia Daunt, an adult with PDA, inspires me with confidence that one day Mollie will be able to enjoy a more typical kind of life involving days out, boyfriends and the ability to interact with her peers on more of a level playing field. She has successfully achieved this for herself and it is this possibility and this hope for Mollie that is keeping some sort of positive outcome alive in my brain.