Pathological Demand Avoidance

As promised…

https://www.pdasociety.org.uk/what-is-PDA/about-pda

THIS is my son!

A family member said that my eldest was behaving in a particular way to be controlling. They were correct but I want to explain that this is not meant in the way most people take it.

He has a need to control. But, he is often not aware of what he is doing. He is not being consciously manipulative.

He is reactive to his environment and feelings, experiences compulsion, and controlling his world helps him feel stable and secure. He gets upset when he can’t because he doesn’t really have the understanding that other people will not, and should not, bend to his will. He is mainly focused on his own emotions and objectives.

Check out the link. It’s a great read!

Autism. It really is a spectrum!

I’m Sorry

I’ve just come downstairs after bed routine and wanted to share this…

After I had read the book we chose, my eldest looked at me and said sorry. I asked why and he mumbled something. I asked him to repeat it and his voice went quiet and shaky. He got emotional and I couldn’t hear all of the words, but I did hear him say I’m sorry for hitting you, and I love you.

I showered him with hugs and kisses and explained that I was sad he had hit me, but that I understood he finds it hard when he gets upset. I told him that I am so proud of him, that he is the sweetest, loveliest little boy and that we love him so much. Daddy said the same.

It reminded me of something I forgot to mention about the journey home. Once his meltdown had passed, he kept randomly hugging me and kissing my hand. He does this a lot. Like he is so overwhelmed with love, and just feels compelled to show it. It’s almost like he feels grateful you are still there. I will always be there! Always!

I know some people believe the children are being naughty and need to be punished through smacking, fear etc, but if you can ride out the meltdowns/difficult episodes with understanding and patience, it is so much better for all parties in the long run. That doesn’t take away how hard this is in the moment, and how much easier it is to say this than to do it.

If we were to be impatient, physical etc…I believe he would spend more time dwelling on this treatment rather than being able to see that we are there for him through thick and thin. And, despite the frustrations we face as adults in these scenarios, I believe it is so much harder for the child. They are helpless and powerless. Vulnerable. We need to model the behaviour we expect.

I am proud that my son feels secure and safe with me. I believe that giving him the space and time he needs is enabling him to explore his emotions and reflect on his actions. Obviously, from the beginning we have had to teach him the language etc, like with any child, but it is in there and he is drawing on everything he has learned.

I have to keep remembering that although life is tricky right now…it won’t always be this way. We are building the foundations for what is hopefully going to form a confident, successful young man, with whom we will share a special bond.

Struggling

So, I’m not going to lie…I am struggling this evening!

Horrendous weekend, behaviour wise. I can’t tell you why… all I can tell you is that after a pretty good spell with my eldest, he is clearly not coping.

It could be down to a number of things.

We have had, from one or both children: refusing to sit at the table, refusing food, blowing raspberries, spinning, dumping toys, crashing toys, being rough, trying to jump on beds/couch, dangerous behaviour, shouting when not getting their own way, screaming, meltdowns, hitting, self-harm, headbutting, avoidance, baby talk, rolling on the floor, impatience, trying to play on stairs, taking things from the fridge/freezer without asking, trying to wander off elsewhere in the house to do gosh knows what…the list goes on!

I have tried to deal with the behaviours as I always do but for the last three days, nothing seems to be working.

My eldest seems extremely anxious.

I have been doing lots of reading, as always, and have reached out to parents of SPD children. I was referred to a link which was initially suggested to help me with my youngest…but it is in fact my eldest. I am going to share this link in another post. It discusses PDA.

My eldest has an issue with getting wet, despite being obsessed with water…and I mean obsessed!

It was raining when I collected him. He had a huge meltdown…refused to walk and didn’t want to go in the pram because water was dripping from the cover. He wanted me to carry him home. I explained that I could not and gave him the option of pram or walking. I had to dry the pram in every area he perceived to be wet, or discoloured. We managed a few steps before he scraped his feet on the ground, making it impossible to push the pram. He tried to climb out of the pram and got stuck, which upset him greatly. When I took him out to walk, he wouldn’t put his feet to the ground because it was wet. He hung from me and almost knocked me over.

Then, some raindrops wet his trousers. Rather than stripping off, like he usually does, he had a huge meltdown…screaming, crying and pleading with me to take the wet away.

We discussed the purpose of shoes. I showed him the raindrops on my leggings and the bottom of my shoes. Nothing worked. He tried to climb me and I nearly dropped him onto the ground.

I pretended to dry the patches…and we discussed how they would dry…and that we could dry everything at home.

I lifted him up, kissed and cuddled him, and after some time and effort, managed to convince him to walk with me, pushing the pram. We had to keep pausing to discuss the rain and he kept crying about being wet.

“Please take me in the car next time, Mummy!”
“I’m afraid I can’t!”

His face showed real pain and tears were streaming down his red, patchy cheeks. I feel so torn between conflicting emotions…feeling frustrated and inconvenienced…also feeling so sorry for this little soul who cannot control his emotions and reactions. Ninety nine percent of the time, his needs outweigh my own and I take a deep breath, push aside my feelings and try everything I can possibly think of to make him feel happier. I wish he didn’t have to go through this all the time…that we didn’t have to experience this all the time.

Once we were home, I started dinner. Once we sat down to eat, another meltdown commenced. This time, the other child jumped on the bandwagon. I got hit in the face! My eldest has a talent for always striking the same place, every time! We removed them both, placing them somewhere safe, and just stared at each other…exhausted and exasperated. My husband asked, “What have we done to deserve this? Daily! We give them so much love. We try so hard to meet all of their needs. Having special children is hard…and I’m worn!”

At least we have each other. Although, it does cause tension at times, it’s nice to have that other human being who gets it…really gets it! Who lives it!

As I write this, the children are playing beautifully. Calm after the storm. Oh…spoke too soon…

Repetition

I really liked this and wanted to share it. As a teacher, I know first hand that repetition is a valuable teaching tool. As a parent, I can validate this further.

When I was an English Coordinator, I was privileged to trial and implement Pie Corbett‘s Talk for Writing. I am very passionate about Talk for Writing and may dedicate a post to it because, quite frankly, I have seen it help SO many children including those with SEN! I loved his message that children need input before they can produce. We ask children to write but we need to give them something to write about, get language into them and teach them about the ‘rules’ of different genres before we do.

Pie Corbett’s model is based on three stages…imitate, innovate and invent. The children have to learn a text by heart using symbols and actions, then they change one or more elements, then they create their own text using all of the tools they have learnt. I will definitely revisit this as I believe it is something all children should have access to, and more importantly, can access effortlessly.

The results were amazing! Utterly astounding!

Anyway, this article got me thinking about a conversation I recently had with my dad. It’s not completely related but here it is…

He said he felt bad because he hasn’t helped my son. I asked what he meant and he explained that he had perpetuated my son’s fixations and interests, and that maybe he should have encouraged him not to indulge in them.

As an example, my son loves, or loved, In the Night Garden. My dad always let him play a Night Garden app on his phone and watched the show with him. My son began to associate my dad with playing on his phone, specifically In the Night Garden. Earlier this year, my dad and I took the children to watch it live and he bought them some Night Garden keepsakes.

My dad somehow felt that nurturing these interests was wrong and only worsened my son’s ‘condition’.

I explained that he had done nothing wrong. He had instead respected my son’s interests and actually learned to share the experience with him, which was wonderful. They would sit together, snuggled up, watching the phone, and I had no issue with that. In fact, it warmed my heart to see their bond and interactions over this special interest.

My son often needs stories, television shows and apps to help him communicate. It’s all part of learning his patterns, and as I’ve said before, I’ve drawn on his memory of these things to create social stories and teach him how to cope with different situations. Although it takes a village to raise a child, I don’t expect other people to do this ‘teaching’, only to enjoy spending time with him and just let him be. Most of his little life is, and will centre around, having to learn patterns, fight his natural urges and step outside of his comfort zone to fit in. He deserves to just be himself around his family and I’m happy they all accept him for who he is.

By nurturing these interests, we enabled my son to feel secure in the familiar. We then used the familiar to introduce the unfamiliar.

As an example, he used to fixate on specific books. Five Minutes Peace and The Hungry Caterpillar were his favourites. His visual memory is amazing and he could regurgitate entire books by the age of two, including expression for the spoken parts. He can recognise some words in the context of the books and has even started adding his own bits in recent months. I digress again…we can talk about that more later.

Anyway, the point is…to introduce new books I had to use his obsession with the familiar. So…”Tonight, Mummy is going to choose a new book to read, but we will read your book first.”

At first, he struggled to accept the new…but over time this has become easier and easier.

I think this topic requires more research and discussion because what I am sharing here is merely from experience…not from reading.

I remember as a teacher I came across a child who was fixated on gold/yellow. We were advised not to let him always choose yellow…he had to have a different colour. This upset his little world. I didn’t enforce it because I found that by letting him have yellow, he felt comfortable and happy. I could introduce new colours once he was in that state.

This just seems logical to me!