Autism, PDA & Us

PLAN C… what the hell is plan C?

Ok so plan B, respite, has helped him calm somewhat but he still isn’t coping with all the demands and he keeps acting out (fight and flight responses) 😫…. It’s blowing my mind coming up with ways to support him and balance work. What is not helping is that my brain won’t shut off so I’m constantly fizzing in my head and I’m not getting more than 4-5 hours sleep because I’m worrying about the impact this is having on my job, my son and me.

Self care activities are high on my priority list for both of us. But its not helping much…that said, I’d be feeling a lot worse if I wasn’t doing anything so that’s a positive.

Today we have a meeting with the school to understand how we can flex his education and attendance to reduce the meltdowns and challenging behaviour. We will be focusing on making sure he can have a chance for social and communication development (seeing his school friends), he still gets a chance to learn so he doesn’t fall behind (which I’m not actually that worried about because he is so friggin’ clever and quick to learn) and that I can actually do my job at the same time.

Not attending school at all is simply not an option for us. I have a mortgage and bills to pay. Even homeschooling would be a challenge because I can’t balance both work and schooling.

Being a single parent carer is;

- stressing about losing your job because of the level of distraction your son creates.
- financial worries because you know not working isn’t an option.
- not having people to take the pressure off you when you know you are breaking.
- withdrawing from friends, even though you need them, because you are so focused on handling your sh*t
- being in desperate need of a hug, but nobody is there to give you one.

Life sucks right now. But as always, I shall stay focused and driven to make sure my son gets what he needs. I will hope like heck that I keep my job, as I reeeeeally need to keep the roof over our heads. I’ll also try really hard to not have a meltdown myself in the process 😮‍💨

Hope you’re all doing ok!

Just know, you are not alone if you’re not!

Sending hugs to all

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CHALLENGING BEHAVIOUR
This is a really insightful perspective on handling challenging behaviour.

All children can be little devils at times. Even more so when they are struggling. So when Neurodivergent children are finding life hard, there is always a reason for challenging behaviour.

Keeping yourself calm, asking questions and finding out what the issue is will help you both to work through any situation. I know it can be hard to do sometimes, we all lose our cool, and that is perfectly ok. It’s what you learn from it that really counts.

Try to learn the triggers and challenges they face, and gain an understanding of how you can prevent them moving forward. It will also help you by teaching them how they could communicate their difficulties through better channels, instead of through challenging behaviour.

Thanks The Therapist Parent for sharing this image.

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This is so important
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Handling PDA whilst on a holiday 🏖️

We’ve been away for a few days this week. As always, we hiked, we ate nice food, we chilled and we had a good time together.

But we ALWAYS have the first 24 hours to deal with when we arrive on holiday. My son is good at travelling, he loves it in fact. But, he always needs 24 hours to release the tension and anxiety that builds up inside him whilst we get to our destination.

This 24 hours normally consists of him shouting profanities at me when I try to set behaviour expectations, even though he has been asked to watch his language. He deliberately ignores anything I ask him to do. If I ask him NOT to do something, he will go right ahead and do it anyway.

To some, this may all just sound like a ‘naughty boy’ in action.

I hear you! It seemed that way to me at first too.

However…..I’ve noticed a pattern in his behaviour each time we go away. The challenging behaviour I describe only ever lasts for 24 hours, and he behaves in the same way EVERY TIME…🤔

So now I get it. I see this is his way of coping with the demand of the journey and the transition to a new environment.

So how do I handle it….

Well, once I’ve put my new boundary in place for the new environment we are in. I then normally disengage from him for a while. I start to very carefully pick my battles with him, and only really speak to him if I absolutely need to. He then releases tension in the silence, and he begins to take the space to think about how he feels.

Normally, he realises that he can’t get my full attention and support if he makes bad choices in behaviour and he starts to regulate himself and communicate openly about how he feels and what he needs to feel in control again.

After a good nights sleep, he adjusts himself overnight. We then go back to a happy balance of behaviour and a healthy connection, so our holiday can get underway.

One of the biggest things I’ve learnt from caring for a PDA child

Learn how your child ticks, and then accept it, as this will help you build a better understanding of them and a stronger bond.

…and ultimately, a happier life for both of you.

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This is such an important perspective to learn when you are supporting a child with PDA.

If we learn the difference between can’t and won’t, and adjust our mindsets as the adult, we can support them better in each situation.

Change happens when you see things differently.

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[source: I CAN Network Ltd]

We can relate to these so much. How about you?

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It's easy to judge the emotion we see displayed towards us and then think we are acting accordingly.

But what if the emotion you are seeming externally isn't the underlying feeling? Those with alexithymia (or even those without it) may have difficulty distinguishing their own feelings, or expressing them to others. Take anxiety and excitement as just two that are difficult to distinguish sometimes.

What if certain emotions are seen as 'wrong', or judged or to expected to be hidden? Or just seen as overreacting or being overly sensitive. If they make other people uncomfortable are they to be masked over?

What if an emotion is a reaction to the environment? What if you cannot identify it, or cannot leave or change the environment you are in? Asking a child to be quieter or calmer in overstimulating place is unfair if that is their reaction to being over stimulated, for example.

It is easy to label people's emotions in the heat of the moment too, but sometimes it takes time, patience and understanding to figure out what is truly being felt. So before we try and judge someone's behaviour we need to realise what is driving the behaviour may not be being represented, and that we need to provide coping strategies, not 'fixes'.

https://diversitydoodleprint.etsy.com

RESPITE AT SCHOOL
My son is currently on day 3 of a week in respite at school. Most schools don't have the facility or ability to give children this respite support, but luckily ours does.

My son loves to learn, and he loves to be around his friends at school. But any tiny little circumstance that doesn't work for him can trigger a volcanic response at the moment because his little stress-cup is full to the brim.

This week he is spending each day in 'The SEN Hub' - this is a calm, quiet and relaxing area of our local school, away from the day to day humdrum and regulation of the school environment. He is able to complete his academic work, but at his own pace. He chooses when he wants to complete the work to remove any demand and pressure from him that he isn't able to handle at the moment.

My son is very intelligent and can often complete the tasks set for him very quickly, as well as taking on additional learning tasks. I'm really pleased that he is able to balance his learning, his well-being and his need for respite in a way that works for him at the moment. He doesn't always need this type of support, in fact for most of this academic year, he has been absolutely fine. But right now he does need it, and we are very lucky that he goes to a school who care very much about him and that he is embraced by teaching staff who want to support him in the best way they can.

In the SEN Hub, in addition to his academic work, he gets to take on tasks that are creative and relaxing. This could be painting, spending time in the forest garden, playing with water or simply just relaxing in the safe space. As long as he completes his academic tasks, he is free to choose how the rest of his day is conducted, which will be doing wonderful things for his self-esteem, his mental health and his general well-being.

To provide clarity for those who don't know us, my son goes to a mainstream school. He has an EHCP in place, which is tailored to his needs. He generally thrives in a mainstream environment, which is greatly accomplished by the fact that he is empowered by such a wonderfully supportive school, who want the very best for him.

I'm sharing all this with you because I want you to feel reassured. I want you to know that these wonderfully supportive schools are out there, they do exist, you just have to find them!

xx

SUMMER SCHOOL TERM
This is the school term that my son struggles with the most. He is all out of tolerance and has less capacity to handle demands places upon him at home and at school. His energy levels are depleting fast so he gets tired a lot quicker, which means his behaviour is more challenging and his response to demand is much more intense.

His school do a great job at supporting him as best they can. I choose my battles with him more carefully and we both try to get downtime to keep ourselves regulated.

How do you find this school term affects your family? Do you see a change in your children’s behaviour and resilience?

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Absolutely! - it’s a tough gig supporting our neurodivergent families. We deserve the time to rest and recharge ourselves.

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Awesome resource list for anyone who is on the hunt for more information and support. Fill ya boots!! 💕

Also…..it is very wonderful to get a mention in a post from another supportive and wonderful page. Thanks Diversity Doodles …you are so gracious and kind. I love your work! 🥰

Who are your favorites? 🧐

Tag ‘em in the comments and make sure to take a minute to hit Follow… or Like? I can’t keep up. 🤷‍♀️

[image description: a DIY post-it note that says, Don’t forget to follow your favorite pages. It makes a difference.]

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Yessss 👏👏👏

Thank you Lisa

So we know that shouting and screaming at your children doesn’t work!…but I’m interested to know how you handle situations where they are choosing to make bad choices? 🤷🏽‍♀️

We sometimes talk sternly to our son when he is in a devilish mood 😈 and deliberately pushing his boundaries. We have spent considerable time learning when he is struggling v’s when he is just being 8 years old and testing the limits. We can tell quite quickly when he is being a little deviant to get our attention.

Whilst we may raise our voices slightly and we are stern with our tone, we are very careful with the language and communication techniques we use to ensure he feels safe, supported and that his anxiety remains intact.

If we don’t use a stern tone, he will not sit still with his attention focused on us. We know he fidgets because he is feeling a little uncomfortable with the situation, which we are fine with, but how else do you get them to realise the severity of their actions?

We do not condone physical punishment. Therapeutic parenting does not work as he just thinks he’s got away with his actions (we tried it several times with no positive results). We’ve tried rewards & consequences, but he will nag constantly and manipulate the conversation to focus back on what he wants. He will also try to negotiate his reward, instead of earning it.

So how else do you do it?

What have you tried that seemed to work?

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[image source: The Therapist Parent]

Hell yeah Counselor Chelsey 🙌

I love this! ❤️

A way of describing PDA 💕

Wow! - this describes my son’s experience with Pathological Demand Avoidance so clearly. Even though he wants to do something, he can’t. His brain shuts it down and stops him!

Shutdown. You may have them or be familiar with the term, but what does it actually mean? Today's doodle is an attempt at an analogy to explain what happens in a shutdown.

A shutdown is an uncontrollable nervous system response to a perceived threat, to it becoming overwhelmed by stimuli, demands and/or emotions, and a need to keep itself safe. As a response the ability to function in a situation is lost.

To some a shutdown may be all consuming anxiety, a sense of intense panic, an impending sense of doom, the overwhelming need to flee the situation. It may present like depersonalisation, derealization, or a form of dissociation.

During a shutdown a person may find they suddenly cannot speak (mutism), cannot process instructions, engage in a conversation or understand anything verbally. They can lose the ability to function in an interaction that they are usually perfectly capable of. This is why it is so vital to understand exactly what 'CAN'T' means in these situations, because the person in the shutdown will likely not even be able to tell you they can't, let alone explain why.

This analogy can go some way to understanding the PDA thought processes, in as much as the person may be unable to respond to that demand in a way a neurotypical individual would. They are NOT being defiant, they are NOT being confrontational, they are NOT saying 'I won't'. The uncontrollable nervous system response to that demand is perceived as a threat to their autonomy, and therefore ability to function. It's not 'I won't. It is simply 'I am not safe and 'I CAN'T!'

Feeling stupid, helpless, frustrated, guilty, embarrassed. These are a few of the things that people experiencing shutdowns can feel. So please, PLEASE, help me to explain to others why those in shutdown don't deserve to feel those things. They deserve understanding, support, compassion and accomodation.

https://diversitydoodleprint.etsy.com

The PDA Space Nformed Consulting

Oh yes!! If you know…you know!! 🤷🏽‍♀️

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Keep this in mind

I completely agree with this. Living in a vulnerable environment where you don’t feel connection and love, or if you don’t feel supported or accepted for who you truly are has a devastating impact. Especially when children become a teenager, and then grow into an adult trying to survive in the world not knowing what a trusting relationship looks like.

Showing love and expressing love is so incredibly vital for people to feel safe to be themselves. No matter who they are!

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Imagine if every young person had at least one adult they felt safe to turn to when they're struggling.

It is so important that you take care of yourselves. Take the time out to recharge your batteries - its something you NEED to do to make sure you can support your children.

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Neurodiverse brains are just brains that work differently from neurotypical ones. I have heard it described as 'running on a different operating system'. It's a misconception that they 'don't work properly' or that they are 'incapable of learning'. It is also a misconception that all neurodiverse brains are exceptional at maths, or computers, or art, etc. Some of them are, some struggle, in just the same way that neuro typical brains have their individual strengths and weaknesses.

But, because neurodiverse brains operate differently, they often struggle to learn things in a neurotypical way. It's not that they are necessarily incapable of learning a particular skill or subject, it's just that they perhaps cannot conceptualise it in the same way as it is being taught. This is why it can be so important to identify an area where a neurodiverse individual is struggling to grasp a concept or skill, and work with them to find a way that they can. So that they too can learn to the best of their own abilities. This could be using tangible objects, combining the skill with a special interest, or approaching it from a totally different perspective.

This is also a MASSIVE shout out to all those parents, teachers, support staff, therapists and everyone who puts in so much time and effort to learn and use so many strategies in order to give neurodiverse kids every opportunity to be the best they can be. Everyday. Thank you!! ❤️

https://diversitydoodleprint.etsy.com

Oh my my my, I can’t tell you how awesome I think this little pin badge is. Everyone who is Neurodivergent should wear one with pride ☺️🥰💪

🤣🤣🤣…ain’t that a true story!! 🙈

I'm not ready for the next one

Love this…its the right perspective to take 👍🏻💕

Love then where they are

So SO true. I wish more people understood this!!

We experience this is our house a lot.
Do you?

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Helpful visual from Sunshine Support to help identify signs of
*Neurodivergent Burnout*

SOME DAYS ARE HARDER THAN OTHERS
This weekend my son and I have been very socially active. This is quite rare for us, mainly because my son can’t handle too much.

Our Friday evening was spent in our local pub for an hour or so where we grabbed some delicious food and played a couple of games of build-a-bug together. We take games because my son would want to run around like a loon if I didn’t …I quickly learnt from my first rookie visit when he was a major fidget-pants!

Following this, we then we went to hang out with our friends in their garden for the rest of the evening to catch up over a couple of beers. Nice! (My son didn’t have beer obviously, he’s 8 😉😆)

Saturday was spent at our little local primary school, helping the community to complete some much needed work to make improvements for the children. My son got to spend time helping and playing with his school friends. And I got to spend some quality time with my friends, with the added bonus of having a green-fingered project to focus on.

Both of us had a wonderful day!!

Today however is the harder day….especially for my son. He doesn’t know what is the matter with him, he just says he feels funny inside.

We have only just made brunch (because we had a lazy morning). But he struggled to eat his food, beans on toast, his favourite. It’s the demand of eating… it’s too much today. He needed me to sit right up close to him to help him eat his first couple of mouthfuls. Thankfully after that he managed to handle the demand of putting the food in his mouth himself, so I stepped away a little to give him space to carry on alone.

I am acutely aware of my son’s struggle with demand. We can have a wonderful time with friends, but as his parent I’m watching out for the social burn out in him all the time. There is a very fine line between my son coping and tripping over the wire to burn out. It can depend on his how his week has gone. It can also depend on his mood, energy levels and how his ADHD symptoms have been draining him.

Today, he couldn’t use his words to tell me he was struggling, he just sat in silence in front of his food at the table. I knew straight away he was struggling.

Behaviour can tell you a thousand words. You just have to be open to understanding it.

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HELP THEM UNMASK
“I’m fine”… I think we all know that doesn’t really describe how anyone is truly feeling.

Masking is a major challenge for any parent or professional to work through. Providing a safe and secure environment where your children feel comfortable enough to really tell you how they feel will help you as a parent.

Think about the questions you ask them each day. Try to prevent the questions that generate a closed response of “I’m fine”

You could try;

What happened at school today?
What were the parts of today you enjoyed?
What were the parts of the day that you didn’t like?
Who did you hang out with today?
Do you need a hug?

Through questions like this, you can find out what went well and what they found hard to handle. It validates their feelings of importance and shows that you genuinely care about the world around them and how they experience it.

Give it a go and see if you spot a change in the conversations you have. See if there is a change in what they are prepared to share with you.

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[image source: Diversity Doodles]

Unconscious exclusion is VERY real. Too many children are excluded because of other children’s parents.

Think about what you teach your children through your own actions and choices.

Imagine how you would feel if it happened to your child. Some actions can be very harmful to others and can have a long lasting effect.

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A good reminder during autism awareness/acceptance month 🩵🌈

Anyone else do this?
😬🙈 I’m terrible at saying ‘gimme 2 minutes’…its my processing time to figure out what my son is asking of me. I do have to remind myself all the time to accept it from him back. Especially as he needs the time to finish what he is doing.

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[image source: The Therapist Parent]