there are days where I loose it - these are followed by quickly by guilt

Whilst I have come to understand more about PDAmeltdowns and the anxiety which drives much of my Son's behaviour, there are days when the frustration of trying to get him to do simple things becomes more that I can cope with.

Times when it all gets too much, when I snap and yell back - this is immediately followed by remorse, tears and an overwhelming sense of guilt for not having retained control of my emotions. Recently I had one of those days.

Dad, who is the centre of his world, was away last weekend for a much needed get-away and downtime. We had given plenty of warning before Dad left, and he knew that Dad would be just a phone call away if he really wanted to chat.

Finding it tough with Dad away

On Saturday morning he rushed into the room looking for Dad, before the sun had peeped over the horizon, and was ok when he was reminded that Dad was away. Apart from never-ending requests to head off to Legoland we managed to get through the day with relatively few difficult moments.

By Sunday it had got too much, and he had retreated behind the sofa cushions inside his duvet cover (actually inside, with the buttons closed up) refusing to change out of his pyjamas and pull ups (he still is not dry overnight, but that is another story) - literally cocooned from the world.

I tried every tactic I could think of to try coax him out so we could get on with the day
  • When ... then 
  • Let's have a race to see who can get dressed first
  • Reading a story to sister (his favourite activity) upstairs to tempt him away from the sofa as I know he can't resist a good story
  • Giving him a list of possible activities, asking what he would like to do
  • Talking about random topics to see if any of them would peak his interest, and distract him
  • Ignoring him and waiting for him to come out

A stand off during a "We need to go" moment

After more than 4 hours he was still sat firmly behind the sofa cushions.  I knew that if I didn't get him out of his pull ups it was likely that he would end up soiling himself, and this would lead to additional struggles as I would need to clean him up and he always resists this.

With an hour and a half till the shops closed and very little food in the house, it was important that we headed out to do the weekly shop. With pressure to get going, and a day of not being able to get him to budge my stress levels were going through the roof - and my creative parenting, patience and mindfulness went out of the window. I had entered into the land of demands.
  • Come on out, help Mummy so we can all get some food for later
  • If we don't get to the shops, there won't be any food for dinner
  • More begging and pleading
  • Bribing
  • Why can't you just ...
  • If you don't get dressed in the next 5 minutes, you are going to loose your screen time today
  • You need to get dressed now or we will be late
All of this just made him worse, with the tension between us escalating. I continued to push and he pushed back. Eventually he was at crisis point - calling me names, making threats, and kicking & punching me.

I snapped

When it all goes wrong

He yelled, and I yelled back - shouting at him to stop kicking me and trying to prevent him from hurting me. We were both in meltdown, and I felt myself being taken over by frustration and anger, with my shouting increasing in intensity and my body tense. There came a point when I could see that the tone of my voice had shaken him, instantly my anger disappeared and was replaced with guilt and shame. I had lost control.

The emotions that swept over me as I listened to him in his room ranting about the injustice of having a mother was too much for me to bear. I sat at the top of the stairs sobbing - crying for not having been the mother he needed at that moment, for the daily challenges that push us to our limits and for the many simple things that we never get to do as a result.

The constant pressure of dealing with demand avoidance

I feel the constant pressure of needing to be a super-parent and always get it right, as I know my Son can't help his behaviour when in these situations.

The guilt of not being able to cope with his demand avoidance and loosing control is something that is hard to ignore, as I feel that I need to do better in order to help him. All of the advice mentions the need to remain calm, and here I am pushing him to his limits and triggering a meltdown because I can't control my own emotions. I feel like I am letting him down at the time he needs me most.

I know that I am not alone in feeling this way, and maybe part of the acceptance that I now need to face is that there will be times that I don't get it right and that is ok.

For more information on PDA, and strategies to use, check out the PDA Society website.

Sons, Sand & Sauvignon

This week the BBC aired the first episode of The A Word. A 6 part family drama about a young boy who is diagnosed with Autism, and his family. In the first episode we see him being diagnosed (rather quickly, but I guess they need to make some adjustments for TV), and the initial reactions of his parents and their immediate family.

For the past few days I have been trying to work out how I felt about the programme - reflecting on our own experiences which were (are) very different to what happened in the show, and trying to think about what people who don't have personal experience of autism will take away from the show.

Some scenes were almost too much too bear, as they brought up many difficult memories. In particular the scene where the little boy refused to participate in his birthday party reminded me of our last party where my son sat under a table refusing to join in with his friends, while the Dad's attempts to get his son to co-operate in the activities which were part of the assessment session reminded me of the many sessions with various professionals where I would try to coax my Son to take part (he needs to get used to them before he will do anything) so that they could carry out the assessment.

I have realised that I will always be torn when watching it as it is hard to watch without comparing it to our own experience, and recalling our memories with all the emotions that are attached to those memories. It will always be tough for me to watch, but I will be recording each episode to make sure I don't miss it.

The greatest part of the show is how many other families are getting to share their stories in the media, and this can only help to raise awareness of the many different experiences that different families face.

How lovely it would be to see this turned into a series, with each series focusing on a different child and their family. That way people will be able to learn about wide range of needs for people on the spectrum, and the battles that their family faces in these different scenarios.
a positive mothers day

I didn't have high hopes for mother's day this year.

My Son spent his last birthday party sitting under the table refusing to interact with his party guests, Christmas day was marked with extreme levels of excitement levels, and Valentines day "was cancelled for everyone" by my Son during a full-blown meltdown when I stuck a heart on his hand-made card the wrong way round (I went landscape rather than the expected portrait) after he asked me to help him finish the card for his dad. 

With this in mind, I didn't make any plans for mother's day as I didn't want a day filled with anxiety due to the additional demands that these types of days can bring to our Son. What I didn't know was that the family has other plans. 

What I didn't know was that the family had other plans.

From an early age both kids have enjoyed cooking, and so Dad had planned that they would all work together to buy the ingredients, then bake and decorate a cake for me. Apparently the original plan was that this would all happen while I was out on Saturday morning, however it took a "little" longer than planned and so I was asked to away from the kitchen for "no particular reason". 

Just stay out of the kitchen, for no particular reason.

The rest of the afternoon was one hilarious moment after another as my Son took the lead on distraction duty and went to great lengths to try make me believe that there was nothing going on in the kitchen. 

This involved:
  • Insisting that his Dad and sister wear their aprons back-to-front when around me, so that they could pretend that they were wearing the aprons as superhero capes.
  • Constantly saying "Nah, there is nothing going on", "there is no special day tomorrow" and "we are not doing anything".
  • A full blown charm offensive as my Son kept offering to do little jobs for me, and then insisted that this younger sister do the same
  • Repeated "whispered" instructions to Dad and Sister, telling them what to do next and how they should distract me

Nah, there is nothing going on

Finally his sister couldn't wait any longer, and she brought me the flowers that they had chosen when out shopping. 

When he walked out of the room we feared that he was heading for a meltdown as his sister had gone off plan. 

My heart melted and I was close to tears when he returned with the empty sweet bucket that he had hidden in his room at Halloween. It was filled with water so that I could use it as a vase. 

By now the secret was well and truly out, with his sister repeatedly asking Dad when they could decorate the chocolate cake in the kitchen. 

Once again he had a plan and decided to tell me the secret that they were baking me a cake for mothers day, but I mustn't tell anyone.

It's our secret

Eventually the cake was decorated and with a Happy Birthday from my Daughter, and Happy Valentines Day from my Son, I was allowed to see the cake. 

It was a work of art!

As I ate that piece of cake I thought about what a fantastic achievement it had been for our Son and our family, and felt incredibly lucky that I had received such a treat this mothers day.  

By finding a way to involve something that he loved and allowing him to take the lead in bringing it together, my husband was able to find a way to celebrate mothers days without it becoming too overwhelming for my Son. 

It was more than I could have ever hoped for!

Sons, Sand & Sauvignon

Dealing with challenging behaviours, triggered by anxieties that we are only beginning to understand, has been one of the more difficult aspects of living with our Son's autism.

Many of the suggested strategies for children with autism have had little impact, and with the threat of another enforced school move we have been desperate for further assessments to provide further insight into his needs before things get any worse.

Having managed to secure an initial assessment with CAMHS, we were relieved when the mental health practitioner agreed to put our case forward to their team however there was one comment made that I can't stop reflecting on ....

I can see it is not due to inconsistent parenting

The fact that there could have been a question that the challenges we were facing was a result of poor parenting took me by surprise.

Before our Son was diagnosed, we had worried that we were to blame for his behaviour, however over time we realised that there was much more to it than that. Now any suggestion that he just needs boundaries, structure, consistency or discipline is deeply hurtful as our reality is so much more difficult.

As I considered all the difficulties we have faced over the past two years, and the daily worry of trying without success to stop his negative behaviours, I was surprised by my instant response to the statement ...

I wish it was my parenting, because then I might know how to address it

If only going on a parenting course and improving my parenting skills could successfully address our Sons "naughty" behaviour through positive parenting, effective discipline and well established boundaries.

Traditional parenting methods have not worked

We have the house rules on our wall for all to see, have tried to be firm and consistent in our parenting, and have tried to make regular use of both time out and reward charts to encourage positive behaviour.

Unfortunately that has not worked, and in some instances our attempt to discipline unwanted behaviour has only made things worse with an escalation that has made life more challenging for us all.

Creative parenting is what we need

To the outside world, many of the tactics that we use won't make sense and may seem to be at odds with what we "should" be doing, however we know that we have to do things differently if we want a happy household.

Currently this means that we trying a flexible approach to parenting which is driven by our Son's needs and focuses on:

  • Encouraging expected behaviour through the use of social stories, and developing his Theory of mind through Social Thinking
  • Not blaming or lecturing him for his challenging behaviour, but trying to discuss expected vs. unexpected behaviours when he is calm and ready to listen 
  • Reducing the demands we place on him at home, and giving him options so he can have a choice in what he does
  • Giving him advance warning before we need him to start or stop doing something
  • Looking for signs that he may be getting anxious, and try to head off meltdowns by addressing the underlying anxiety before the meltdown occurs
  • Changing it up, as what works today will not necessarily work tomorrow
  • Using mindfulness to help stay us stay calm in the present, by not dwelling on the past or fretting about the future
  • Engaging with parental support groups to share ideas, give us strength when times get tough and help us remember that we are not alone

We are rethinking parenting and trying to find a different way

This is an ongoing lesson in creative parenting, where you need to look past the visible behaviours to identify and address the underlying needs and find novel ways to get around the problem. It is not an easy path and we keep trying the best that we can as we know that our parenting is not to blame and our Son is not naughty.

Useful links I have found

Does your child have challenging behaviour? How do you cope, and what techniques have you found successful in managing this? 

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