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!

Food & Choking

We’ve discussed fussy (or limited) eating. We’ve discussed safety. Now for something that combines both.

Choking hazards.

The NHS specifies which foods should be avoided for young children here:
https://www.nhs.uk/…/foods-to-avoid-giving-babies-and-youn…/

I found this about choking risks:
https://www.nationwidechildrens.org/…/education-store/choki…

And my personal favourite, Dr Sears:
https://www.askdrsears.com/…/feeding-infants…/chokable-foods

It’s is advised that children under four or five avoid lots of foods that I have seen very small children eating, such as raw, whole apples. Lots of people have, again, called me fussy for not letting my children eat certain foods but my motto is I would always rather be safe than sorry.

Some things I have allowed but I am conscious of how the item is presented. Apples need to be peeled and sliced thinly. Grapes need to be cut long ways etc. Apparently raisins are a no no and blueberries should be sliced. I have failed on both counts there.

I am also really strict about sitting whilst eating. At the moment, the children struggle to stay at the table when they have finished. They used to do this when they were smaller, but now they get distracted too easily and just want to play once they are finished. In the spirit of picking your battles, I no longer try to force them to stay at the table. They are two and four at the end of the day, and it is pretty boring. I’m not saying they will get away with this as they get older.

I am really obsessive about biting and chewing as well.

My eldest suffered from horrendous reflux as a small baby and toddler, and he choked on everything…even water until he’d passed his first year.

My youngest seems to cram food into his mouth and I have had to physically put my finger into his throat to remove compacted food.

Eating and chewing properly, and slicing food to prevent choking, are important in my mind.

Lots of people have, again, scoffed when I’ve cut the spiky ends off of chips and said that their children have coped just fine eating food without fussing like I do. I’m sure they have but I don’t want to take the risk.

I think it’s sad that in our society we are so judgmental. Sadly, when you become a parent, opinions come from everywhere. I was told early on not to listen and to do what I felt was right. I can’t say I haven’t listened as it’s impossible not to, but I can say that despite comments I’ve received, I’ve never changed the things I do to keep others happy. I know my children best and always do what I feel is best for them at the time. I think every parent does.

This leads me on to other issues such as dummies, bottles and co-sleeping…but I think we’ll explore this in another post.

sliced food
choking hazards
food for toddlers

School Pick Up

All children get tired after school but for my eldest, this has a huge impact.

I took the children to get a treat from the bakery. They ate their snacks and I used a wipe on the children’s hands and faces. Then without thinking, I wiped some sugar from my eldest’s jumper. He hates getting wet. Alongside being tired…this was too much…and he had a meltdown.

He screamed, cried, hit me in frustration and began to take his top off, in the middle of the street.

I watched the other parents walking by with their children. People were staring, as usual, and the rest were just going about their business, popping into shops, jumping into cars or walking home…with such effortlessness.

It took me almost an hour and a half to walk home…when usually it takes no longer than 25 minutes.

Tonight a family member said they wish I didn’t worry so much what other people thought and this struck a chord. I reflected on this and realised that it isn’t so much that I am worried what other people think, it’s the fact I am so exhausted from the daily struggles and battles I face. I adore my children, but for a brief moment, I watched the other families and felt slightly envious. I would love to be able to pop to the park with the children or even just walk home without all the dramas that unfold from a plethora of triggers I can’t control.

I think control is one of my frustrations. I can’t control what people think or how my children behave. I feel utterly helpless. The snapshot people see of my children ‘misbehaving’ is of course going to make people form opinions about my parenting. I feel this is unjustified and wish they could see beyond the snapshot to see just what I juggle and what a good job I do, and how loved and happy the children are the rest of the time. But sadly, this is not possible.

This morning my youngest had a meltdown because we couldn’t walk home the way we normally do. This lasted a long time and resulted in him removing all of his clothes and weeing on the carpet. He has had a few behavioural differences since he was very young, but now they are becoming more prominent. Ah, the magical age of two and a half to three, just like my eldest. However, they both experience very different behaviours and difficulties.

It probably sounds like I accept and tolerate this behaviour…but I really don’t. However, during meltdowns there is very little you can do ‘in the moment’.

My youngest presents as angry. Everything seems to annoy and upset him. But when he snaps out of it, he is just the loveliest soul. I am still learning about strategies to use with him, as the things I have in place for his brother are not working.

My eldest is going through ASD/SPD diagnosis. We are also looking into Tourettes and Dyspraxia. He also meets criteria of ADHD,

My youngest is being assessed for behavioural difficulties. He certainly has some SPD issues but these are different to his brother. His behaviours seem to be related to ADHD or ODD.

I’m so mentally, physically and emotionally drained right now.

Safety

So many thoughts this evening, and no idea where to start.

My eldest is still loving school but he is struggling with his sensory needs. He keeps squeezing into tight spaces and every day he has a new injury from being so clumsy.

As I’ve mentioned before, I have been called fussy on many occasions but everybody is now seeing why I simply have to be. I work hard to keep my children safe because they do not possess the ability to do this themselves. We consistently teach them about dangers and how to do things safely, but much of the time, compulsions take over. I cannot become complacent because bad things will happen.

One of the things people have openly scoffed at is my concern over stairs. My children can use stairs confidently, and have done from very young. However, I am still very strict about them. I do not allow the children to go up and down them without supervision and can’t understand why more people don’t give them the respect they deserve. As an adult, I have fallen down them and suffered with concussion, so I do not take them lightly.

Earlier this week, my eldest fell down the stairs. My husband saw the whole thing and was quite upset as my eldest actually did a roly poly before landing at the bottom of the flight. I was hysterical as I came running out to see my son lying on the floor, crying and holding his head. I was so worried about his neck and head. The reality is, this could have resulted in something a lot worse than, thankfully, it did.

This happened on my husband’s watch…and the most annoying thing is he was being very vigilant. We usually walk down the stairs before the children, but my eldest had stepped in front of my husband, through impatience. He was carrying a water bottle or toy and my husband removed this from him explaining, as we always do daily, that they should never carry things up or down the stairs. Despite this, he somehow tripped and fell.

Today, my eldest came home with some horrible injuries, sustained at play time. Nobody saw what happened, and he will not talk about it. I understand accidents happen, but he has so many it’s crazy.

Have things happened on my watch? Of course. Have there been near misses? Of course. But on the most part, I understand and respect his triggers and unpredictability, so I am ‘on’ all the time. What happened today would be a more common experience if I wasn’t so on the ball…but that in itself is tiring.

I am also really ‘fussy’ about doors and car doors…fingers and toes. I can’t discuss it but I had a horrific experience as a child, during a game of hide and seek. I hid behind a door…my brother slammed it open…I can’t say any more.

As a result, I am quite strict and obsessive about not playing with doors, standing behind them or putting fingers near the edges. What makes me feel sick is that all it takes is for somebody to lapse for a moment, and for somebody else to accidentally, not thinking, slam a door…for permanent damage to be done.

I can’t bear it!

My niece is very accident prone and requires constant attention. People scoff at this, but she needs to be watched all the time. She clearly has ADHD and I believe she is also on the spectrum, mainly just because she reminds me of myself as a child. My mum always said that she feels I should have been diagnosed with ADHD as a child, but it wasn’t all that common then. Although, I recently learned that a school friend of mine was diagnosed as a child. How I did not know that is beyond me. However, I did always know there was something different about her. I guess that’s partly what drew us together.

It sometimes feels like people believe that outing your child as SEN is an ‘excuse’ for poor parenting. When in fact, it is an attempt to promote understanding.