Imagine ....

Your Son was diagnosed with autism a month ago by a child psychiatrist. You are trying to find out what autism is (and isn’t), you are chasing to get appointments with the paediatrician as well as several other therapists whose opinion you need (Occupational, Speech & Language, Educational).

With 2 weeks to submit your parental views to convince the LA that your Son needs an EHC needs assessment, you have been called into school for the third time in a month to discuss his challenging behaviour. They want you to agree to a reduced time-table which you can't support as you both work (it’s not illegal as they are an independent school), and they believe you are “lucky” they are being “nice” and not talking about exclusion. 

Then you get a work email that you need to migrate your email. What do you mean I need to migrate my email? Cue breakdown. 

This happened to me last year. 

I read the two pages of instructions, three times. The step-by-step instructions were thorough but I couldn't make sense of it. On the fourth attempt it was too much to bear - I got to the second paragraph, decided enough was enough and closed my email. 

Fast forward a month.

My Son’s behaviour is getting trickier by the day, school are now talking exclusion, we are arms deep in assessments, the LA authority have turned us down for a lack of sustained external involvement (isn't that why we are asking for an EHC – to get the involvement from the professionals that I can’t get appointments with), I can’t remember the last time I talked to my other half, and I still haven’t tried to migrate my email which means that I am no longer receiving work emails.

I cry over the smallest things, and I worry – all the time. Even my worries have worries.

The pressure on mental health

Trying to care for a child with special needs, whilst trying to establish the support that they need to progress at school and at home brings a whole world of pressure and stress. This in turn can have a major impact on your mental health. 

Looking back, I remember the feeling of desperation and the fear of not being able to help my son. Our life was measured by the target time-frames of the EHCP, and our world became smaller as we limited going out for fear of a meltdown. I had seen doctors and counsellors, and had been prescribed anti-depressants, but I didn't follow up on any of it at the time.There was no time think about our own mental health, and I came so close to burning about and having a breakdown of my own. 

I know that I am not alone in having experienced this, I have come across many other parents who have had similar struggles with depression, anxiety and stress as they battled with different aspects of autism related challenges. This is why I fully believe that supporting autism needs to consider the whole family - and not just the child.

Caring for any child can be stressful, caring for a child with special needs adds even more pressures and sometimes it can feel hard to cope.

Impact on Relationships

It is so easy to forget about our relationships  in between the form-filling, school meetings, learning new parenting strategies, managing meltdowns, attending appointments, reviewing assessment reports and generally researching the internet for pointers on the things we should be thinking about or looking into.

Good relationships help us live longer and happier lives, with fewer physical and mental health issues

In the past year my relationships with my Son, my daughter, my partner, professionals involved in assessments, and teachers were all put under pressure as I fought to help my Son, while relationships with friends and family were largely ignored as we focused on the daily struggles in front of us.

The most challenging, and anxiety causing relationship was with our previous schools as we battled exclusion due to challenging behaviour. This is the relationship that I would most like to change.

I am not quite ready to join the P.T.A, but I do want to find a way to build relations with the school & teachers. This article on the Mighty has a great set of suggestions for parents and teachers - and I hope that with time we might be able to find a way to work together to help my Son.

Talking about the pressures on the relationships at home is not an easy thing to write about. Let's just say it was not good, and there were times when I wondered if we would make it as a family. 

Thankfully our relationships are flourishing again now that we have space to focus on things other than autism, getting an EHCP and potential school exclusion. We are finding ways to bond as a family, and last week my other half even suggested a date night (I didn't realise the intention, and almost took it as a suggestion to arrange a work team night out). 

Coming out the other side

Thankfully things have changed, and the anxiety that plagued me has diminished. I realised just how far we have come three weeks ago when I caught myself singing along to A whole new world (yes I do have the theme song from Aladdin on my playlist) as I laid a new pathway in our garden. 

Some might say what a difference a year makes, I say what a difference making small changes for 365 days can make. These are some of the things I tried.

1. Find a way to work through your emotions

Finding a way to express my thoughts and emotions allowed me to work through them and let them go, rather than dwell on them and let them drag me down. 

This blog was a big part of that. I blog for me and share it for other people. Each time there is something on my mind I draft a post, and get all my thoughts and emotions out - it is an extremely cathartic process. By the time the post is ready for publishing, I have organised my thoughts and processed my emotions. 

For some people, this can involve talking to friends, family or professionals. For others it can involve doing something active such as going for a run, or heading into the garden. Anything that lets you put things into perspective. 

2. Forget the past, deal with the present, and don’t stress about the future

Trying to be mindful has really made a difference to how much I worry about things which I can't change, and has reduced the overall levels of stress that I was feeling. 

My new motto is to only focus on the things which I can change that are important right now, and not worry to much about the things that have already happened or that I will need to focus at some point in the future. I am spending so much less time thinking (and talking) about what did or may happen, and my brain is enjoying the downtime.

My energies are now fully focused on what I need to do right now, which makes everything seem a lot more manageable. I have come to terms with the fact that I can't do it all, and I am not going to get everything right all the time. I may miss something important, but that is ok. 

3. Look for the positives

I became focused on the challenges and the negatives, and lost sight of the great things that were going on around me. A FB group, PDA Positive, helped remind me to look for the positives. Looking for the positives helped to change my focus and lighten my mood.

From the spontaneous bunch of flowers that my Son picked for me from the garden, to the Lego Phoenix he made using his imagination I have taken them in and celebrated them for all that they are. 

Then the Happiness Project helped me to think about the things that make me happy, and after reading it I set myself happiness projects which forced me to do things that I might otherwise have ignored. 

I can now make a mean biscotti thanks to an Italian cookery class, which was linked to one of my happiness projects. Those biscotti, with a nice cup of coffee, have brought me SO many positives!

4. Take time out – alone and as a family

Taking time for myself is now one of my top priorities, as I know that I need ME time in order to support the family and be there for them. From my Italian cookery course to enjoying time in the garden or with my camera, I have been able to remember the things that I love. This has help to make life seem so much more balanced. 

Getting out together as a family has been another priority for us, with day trips to the seaside and various Merlin attractions (easier with our max card). For so long we avoided going out as we wanted to take the easier route of staying at home which we knew would be less stressful. 

I am so glad that we have made the effort, as these days out have allowed us to have fun as a family - banking positive memories and building bonds which we are able to draw on in the more challenging times. 

5. Reach out for help

There were times when I felt so alone, and so isolated. Reaching out and asking for help has had a huge impact. I don't know how I would have made it through the year without the support of professional counsellors, charities, friends, family, local support groups and online support communities. 

The community support around us has helped us keep going through the tough times and I regularly reach out to others for help when I am faced with a challenge that I don't know how to tackle, as I know that we can't do this on our own. 

Supporting families with autism needs to be as much about supporting the mental health of the parents / carers, to ensure that they are able to remain resilient and face the challenges that come their way.

With mental health awareness week I am grateful for the support that we have received, and am committed to strengthening the relationships around me so that we don't let them fall victim to the challenges that living with autism can bring.

My MHAW #RelationshipsResolution will be to take time to find a way to build a relationship with my Son's school. What's yours? 

Useful links I have found

  • Cerebra, a charity which supports children with special needs, provides a free telephone counselling helpline for carers and has a freely downloadable Stress book to help families manage stress. 
  • There are a number of great links to professional help on Affinity Hub, along with numerous resources aimed at providing emotional support to parents of children with special needs. 
  • The Samaritans  have a helpline that you can call up to talk to someone about something that has been troubling you. 
Sons, Sand & Sauvignon

Cuddle Fairy

pathological demand avoidance - the importance of support for parents

What an amazing week this has been for us. It was PDA Awareness Day which I supported with a coffee, cake and chat day along with raising awareness via my blog and social media.

There was a definite increase in PDA related posts and tweets online during the week, and I have had many conversations explaining what PDA is (and what it isn't). I am so excited to see this happening as it means that awareness is growing - I do hope that soon we will see PDA being recognised in the diagnostic criteria

On a more personal level, this week was all about community and connecting with the support communities around me.

It is so easy to feel isolated and alone as an autism parent, especially when facing challenges that push you past your limits. There have been many times in the past year that we retreated into our own world whilst trying to weather the storm around us, but this week was different.

I was supported by three communities of support around me, each of whom supported me in different ways.  It reminded me of how important these communities are to helping each other and sharing in the good times (and the bad).

With so much to learn, so many challenges to overcome and numerous wins to celebrate, it is these communities that keep us going.

Local Parent Support Groups

This week I had the opportunity to meet up with other parents from two of our local parent support Groups. On Monday, it was drinks with G.R.A.S.P.S parents and on Thursday it was dinner with South Bucks PDA parents.

I try to attend at least one meet up a month with other parents, and always come away from these meet ups with something.

This week we spoke about trying to get EHCP needs assessments, understanding Sensory Processing needs, and I learnt of a mainstream school in Maidenhead who is doing everything they can to help one of the other parent's little boys in class which was really great to hear. We also spoke about PDA, the support that is available and the importance of the right support strategies. Such a great way to learn from others, and connect with local families.

There is nothing like talking face-to-face with other people who understand what you are going through, and can share their insights from what they have discovered from their own journeys. These local connections have made us feel less alone, and we now have people we can turn to if we have questions that we can't answer.

You can find your local support groups via the National Autistic Society, Contact a Family and PDA Society.

SEND Bloggers Facebook Group and the Social Media community

A while back I was invited by Steph of Stephs two girls to join a FB group for SEND bloggers.

Through this group I have discovered a group of amazing bloggers, most of who are listed on Bringing us together: Send-parent-bloggers. They are all passionate about their families, supporting other people and raising awareness of various aspects of special needs including Autism, PDA, Ehlers Danlos syndrome and Undiagnosed Genetic conditions.

From this group I have been inspired, and have learnt so much from the way in which they inform and help the people around them. On Tuesday I asked the group to help spread the word about my post on PDA Awareness Day, which they did via their blogs, FB pages and twitter. The support and response was more than I could have hoped for - my recent PDA posts have had almost 3000 views. This was a massive milestone for me, and something that I didn't dream of when I first started my blog.

With my FB page and my new twitter account getting new followers each day, I have seen how social media can bring people together and help other people to find the answers they have been looking for with little success. There is something quite special about seeing people make connections, and find a way forward

I still have much to learn, and I am looking forward to see where it will take me next.

In the past few days this community has come together to help promote PDA Awareness Day. The posts and tweets have been flowing, and I have eagerly been reading what other people have been sharing. There are so many inspiring stories and great advice from other parents out there. Check out the blog hop below to read some of these great posts. 

Finding this community has helped me find my voice on something that is close to my heart, and has allowed me to connect with other people as part of trying to do something that can make a difference.

Our Local Community, Friends and Family

cakes and coffee for #PDAAwarenessDayWe are really lucky to live amongst a great group of people, who came out in force to join us on Saturday for our coffee, cake & chat day.

Even more amazing was the other families from our local PDA parent support group who were able to join us.

With over 30 people dropping in throughout the day, many armed with cakes to add to the table, we raised plenty of money for the PDA Society. We also had plenty left over, so I will be heading into work armed with goodies to share the love (and hopefully raise even more money).

Looking at our house filled with happy people, all coming together to support a cause which is so close to our heart really made me realise how lucky we are.

If existed, my street would get a 5 star rating! As would our family and friends who have supported us every step along the way.

These are the people who have been there with cups of coffee/ wine as I have sobbed in the bad times, and helped to celebrate the good times with wine / fizz.

They have listened, asked questions, helped us out in tough moments, challenged me to be positive when all I could focus on what the negative, encouraged us, been incensed at our injustices - and most importantly they have been there.

This week I celebrate #PDAwarenessDay AND #GreatCommunitySupport . Holding Hands Together, we can make a difference on a personal and a global level.

Did you support #PDAawarenessDay? Do you have a great community that keep you going? Let us know in the comments ....

To add the PDA link up to your blog, include this code in your blog post.

Sons, Sand & Sauvignon

PDA day raising awareness pathological demand avoidance

It is just over a year since we were told that our Son, then aged 5, has Pathological Demand Avoidance (PDA) – which is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control.

Since then he has been moved on from 2 schools, asked to leave his child-minder and his only friends have been the teaching assistants at school as he was kept isolated from the other children at school as his behaviour was too unpredictable and he would frequently lash out at his peers.

At home we have had some epic meltdowns – which can last for hours. Looking around the house you can see the scars that these have left – the curtains pulled down in our stairs, the series of broken TV remotes and night lights, the ripped up books/ magazines / paper, the shattered vases & scented candles, the family portrait no longer hanging on the wall.

Despite this I think we have been incredibly lucky.

Finding out about PDA

We learnt about PDA quite early on, which meant that we were able to start understanding why our Son was behaving the way he was and we were able to read up on strategies that we could us to help due his anxieties by changing the way in which we tried to get him to do things. With these strategies our Son is a different person, and the meltdowns & challenging behaviour have reduced. Things can still be challenging, but we are better able to cope.

Not all parents find out about PDA so quickly – these parents can face years of struggling with challenging behaviour without understanding why it is happening or how to change it.

I believe that one of the key reasons for this is that PDA is not included in the diagnostic manual (DSM 5), with many professionals not recognising PDA as a diagnosis.

The National Autistic Society notes that PDA is considered to be part of the Autism Spectrum, however we need widespread recognition amongst professionals so that more children, like my Son, can receive the right diagnosis which means that the right strategies and support can be put in place to help them.

Raising Awareness of PDA

To raise awareness the PDA Society are celebrating PDA Awareness Day on 15 May with fundraising events being planned nationally by friends of the society.

I will be doing my part by hosting a cake, coffee and chat afternoon for friends, family and neighbours – watch out for pictures of yummy cakes & fabulous fun as we raise awareness together.

Let’s hope that with enough awareness and support, PDA will finally be widely recognised as a diagnosis so that PDA children and their parents are able to get the support that they need while there is still a chance of making a difference.

If you want to know more about PDA or are interested in hosting your own event, you can look at the PDA Society website for details.

To add the PDA link up to your blog, include this code in your blog post.

Sons, Sand & Sauvignon

demand avoidance parent strategic get things done

Can you imagine trying to get two kids under 7 out of bed, dressed, fed and ready to head out of the house without ever asking or telling them to do any of these things? 

This is a challenge that we face every time we want to head out as a family (in fact pretty much any time we want our Son to anything). 

For our Son, aged 6, who has a form of autism known as Pathological Demand Avoidance (PDA), the simplest everyday requests can lead to anxiety and resistance. The more you insist, the more he will resist. 

This means we've had to think of ways to get him to do things, without specifically telling or asking him. 

Over the past year we have tried many techniques, with varying degrees of success (and frustration) - the most effective of these has been the phrase "Last one to the car gets the rotten face paint".

For many people, I am sure that the measures that we go to in order to get things done must seem overly complex and involved.

I agree - and they involve a HUGE amount of thinking, mental effort and patience. There isn't a day that goes by when I don't wish we could follow Supernanny's advice to get the expected behaviour through consistent discipline.  

The problem is that without relying on the strategies below we would get kicking, screaming, running & hiding, verbal abuse, lying on the floor refusing to move, moaning that his legs/ arms don't work and repeated attempts to negotiate doing something else. Disciplining these behaviours would only make things worse, for all of us. 

These days we don't realise how much we manage this without thinking, until we go off script "for a break" or need a friend/ new childminder to look after him for a while, and we see the fallout of them trying to get him to do something.

Getting to the car, with coat and shoes on

We have been playing the rotten face paint game for years, well before we knew anything about autism or PDA, and my Son loves it. 

Despite this, I only recently worked out that the game had the power to help us avoid the regular battles linked to having to stop playing, head to the front door, put shoes and a coat on, and venture out to the car. 

I can't remember how it started, but my Son came up with the the phrase when we was 3/4 years old as he hates facepaint and rotten facepaint must be the worst. The one thing I do know is that it works!

As soon as we utter that phrase, he will race to get his shoes and coat on before rushing out of the door and into the car where he will wait excitedly to see who who is going to get the rotten face paint.

What could have taken hours, and a bucket load of patience, has turned into a fun activity with minimal fuss taking no more than 5-10 minutes. 

Getting dressed for school and eating breakfast

Mornings are full of demands, which is not helped by added time pressures of needing to be ready with enough time to get Daughter to nursery, Son to school and Parents (i.e. me) to work.

It starts with preparation the night before (thanks to a very organised hubby) - with school uniforms laid out and bags packed by the front door.

In the morning, we have a rule that  the iPad will be available to use by the front door once everyone has got dressed and eaten breakfast and brushed their teeth. Nothing like a little incentive to help with self-motivation.

Some mornings can still be a struggle, however this daily routine helps us to contain the level of fallout that we have had in the past - and MY morning stress levels are definitely lower as I don't seem to be managing to get out the door with much less effort these days.

Eating family meals at the table

At weekends we like to sit down at the table to eat as a family once a week. A lovely idea - but it can easily deteriorate into chaos.

I have lost count of the times I have spent hours cooking a Sunday Roast, only to have the kids refusing to sit at the table and eat. Any insistence on everyone sitting at the table usually ends up in some sort of battle, and an attempt to enforce Time Out for unexpected behaviour.

These days we don't nag about needing to sit at the table, however we do repeatedly say that "people sit on chairs when eating meals at the table" and we make a big deal of anyone who is sitting nicely. We make an even bigger deal when people are eating nicely.

It is amazing what a difference changing the way you phrase things can make - it is still the same thing, but the outcomes are completely different!

Stopping watching tellly / playing on iPad

Addictions / obsessions come in all different forms. In our house it is watching TV or playing with ipads/ iphones. As a result, we have specific times of the day that this is allowed, and screen time is limited as much as possible (with the exception of Film Fridays and Sunday Family Movies).

Switching off can be another source of tension, so we try to pre-agree the time allowed along with the consequences of trying to argue when it is time to switch off.

Before the agreed stop time, we give a 10min & 5min warning. And when it is time to stop, we will give him the option to press pause the TV show / game so that he knows that he won't miss out on anything.

The little bit of control to being able to select pause seems to make a big difference for him.

Heading upstairs to get ready for bed

Nights times and trying to get everyone upstairs for bed are almost as stressful for me as trying to get ready for school in the morning. The children are tired, I am usually weary and desperately wanting to settle down onto the sofa so that I can relax for the evening.

Depending on how tired I am I have one of two strategies for getting upstairs - the first is asking whether we are walking or catching the mummy express (a piggy back) to get upstairs.

Other days, I try a little competition between Daughter and Son, with a challenge of "How quickly can you get upstairs" or "First one to brush their teeth gets to chose their nighttime story"

By this stage I am usually sat on a stool in the bathroom, mustering my final ounces of patience as I try to remain calm while toothpaste is being smeared over the mirror (choose your battle) and counting down the minutes until lights off.

Going to Bed

The final challenge of the day is going to sleep. There are periods of time when sleep seems to come easily, and there are others when a new tactic to try avoid going to sleep means that this can take up to 3 hours each night for days on end.

Regardless we try and stick to the same routine each night
  • Read a bedtime story
  • Get water with ice-cubes (6 cubes to be precise)
  • State that it is sleep time
  • Cover him with a satin throw (which he claimed from our spare room about a year ago) 
  • Wrap him tight in his duvet
  • Dim the lights
  • Say Night Night
  • Close the door
  • Breathe a sigh of relief - and pray that it is going to be an easy night

If he does get up out of bed, we walk him back to bed trying to say as little as possible, repeating the bedtime routine from the point of covering him with the throw. 

Other strategies use to try get things done

We are always looking for new strategies to get through the day, and have already collected a number of them to pick & choose from as needed.

These include:
  • Bet you can't ...
  • Can you help ....
  • Who knows how to 
  • First one to ..... gets to ......
  • Talk about a topic of interest to him whilst guiding him to through the required action (e.g. getting dressed, moving him to where we need him to go)

At the end of the day the most important strategies for me have been to take each day as it comes, learning to recognise when we are heading towards a battle of wills so I can step aside, and lastly that a little laughter can go a long way - even if you when you least feel like it. 

For more information on PDA and strategies to use, you can go to The PDA Society.

Do you struggle with demand avoidant behaviour? What strategies have you come up with to help with the daily routines? 

To add the PDA link up to your blog, include this code in your blog post.

Sons, Sand & Sauvignon

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