Going Out

When we go out, we always have to find autism friendly times. Either at the crack of dawn or when other people are going home.

We have to think carefully about where we go as the children aren’t great in crowds or confined spaces.

Naturally, we do expose them to these situations but it has to be carefully planned and thought about.

It is 9:15 as I am writing this, and we are racking our brains thinking about what to do with the day.

We still aren’t ready, which is not like us, but that means by the time we are, we will be going out at the same time as lots of other people.

To make our outing successful, we can’t go somewhere busy or loud, as my eldest will get overwhelmed.

What to do…

Celebrating the Positive

I believe strongly in balance and celebrating the positive. Yesterday I was feeling extremely run down and was a little anxious about what the day had in store for me.

The children picked up on my vulnerability and rather than exploiting it, which has happened on occasion, they were very sweet.

My eldest in particular was very cuddly and said, “Don’t worry, Mummy, I’ll take care of you.” He doesn’t always pick up on my emotions but when he does, he always gives me cuddles and kisses.

We had a very sedentary day, snuggling on the couch and watching movies.

I try to limit screen time as I’ve noticed that this can overstimulate the children. My eldest tends to stim and tic a lot more than usual when exposed to screens or when he’s tired.

However, some days it can’t be avoided.

This got me thinking about the misconception that autistic people have no empathy.

Admittedly, my eldest needs very obvious clues to identify how I am feeling, and is not very in tune with people outside of the family, but he’s such a sensitive boy who is very loving and affectionate. This shocks a lot of people!

One of the paediatricians we visited said that sadly the criteria was a little out of date and that it needed to move with the times.

We now realise that ASD is a spectrum, not in a linear fashion, and that no two autistic people are the same, despite sharing similar traits.

This is something I will address in more detail in a future post.

What is autism? Is everyone a little bit autistic?

Are autistic people empathetical?

Meltdowns

Wow, today has been a hard day so far! 😪

Meltdowns from both children. One over a nappy change and the other because of the noise from the initial meltdown. The first meltdown lasted for almost an hour! I’ve been kicked, shouted and screamed at…

I was told by somebody a while ago that they wouldn’t tolerate being hit and maybe the children would benefit from being hit back!

I don’t believe violence teaches anything, and I don’t see how violence is effective when dealing with violence, for the hypocrisy value alone. I think I am being asked to rule by fear! I don’t believe in that either. Even if I did…these people clearly haven’t raised children with additional needs.

My eldest, for example, has no concept despite the repeated conversations and role play.

When they are having meltdowns, they both present differently. My eldest has utter loss of control and looks confused, almost upset and forlorn. He throws himself around as though he just doesn’t know what to do with himself and hits out at me.

My youngest is just so extreme. He gets incredibly angry and throws or kicks things. He shouts and continues to the point that he sobs and doesn’t know how to come down. His tend to go on for around an hour so it’s pretty hard to deal with.

Feeling a bit broken.

Also feeling conscious that I’m making them sound terrible, when in fact they are not. They have clear boundaries and consequences in place, and on the most part they are just a joy to be around. Everybody comments on how polite and well behaved they are…but when something triggers them…my goodness…

Bath Time

I adore bath and bed routine…most of the time!

But sometimes… 🤦‍♀️

Both children LOVE water. Bubbles and water dominate their play.

They love playing with it, looking at it, listening to it, being in it…

They both get so excited about their baths and we find it really calms them ready for their bed routine. However, last night was not one of those times!

Most of the bath went really well. You could say it went swimmingly 😉

We played with bubbles and sponges, cars, ducks and containers. We splished and sploshed, making volcano tea that erupted from the cup splashing us all.

My eldest was mesmerised by the foamy bubbles and loved putting them on his car, creating pies with his sponge and experimenting with them in only the way he can. He then got over excited, flapped his hands and launched himself at his brother.

Anyone who knows me will know that I am all for play and sensory experiences, but I am also safety conscious…and we don’t mess around in the bath. It’s too dangerous.

My youngest wound up with a scratch on his tummy which triggered a tantrum. It was time to get out.

I drained the water and took out my youngest as he was trying to stand up in the slippery bath, in an attempt to climb out! Good call I hear you say! This was in fact a big mistake.

My eldest is going through a phase of not coping well with waiting and changes in routine. People misinterpret this as him being impatient and controlling for the sake of it! He does have a need to control his environment, but he can’t help it.

He struggles when structures and routines are not adhered to. Usually, he gets out of the bath first so this was too much for him and he had a huge meltdown. In the bath! Then as I tried to get him out of the bath! Then once he was out of the bath!

He gripped the bath with his feet so he was suspended over the tiled floor. He pulled on me so much that I was struggling to hold him. I had visions of him falling and it made me feel sick! My youngest was still in complete tantrum mode in the middle of the bathroom floor, and I was alone!

So what triggered this behaviour? Well, just for starters, the combination of overstimulation, a deafening tantrum and changes in routine that were not aligned with his expectations.

We work hard to keep things as structured as possible, but sometimes this is not possible. We consistently expose the children to situations that put them out of their comfort zone so they can learn to cope with spontaneity, and in some cases they are getting better, but on this occasion it was not received well.

Some people think this behaviour is contrived and perfectly manageable. That if I was harder on the children, they wouldn’t be like this. Sometimes opinions like this seep in to my soul but I have to remind myself that people are ignorant, and it’s not their fault. They are not living my truth 24/7! How can they possibly know what it is like to raise SEN children? I certainly didn’t until I lived it!

I could never have imagined how difficult everyday tasks would be. Although I would never change my children for the world, I can’t say I don’t sometimes look at other families with a sigh and a longing. They can relax with a coffee and chat with a friend while their children play. They can pop to the shops with their children. Or at least just go out with their children. I cannot go out by myself with the children because when my eldest has a meltdown, I cannot keep both children safe. This means we have to stay at home unless another adult is available to accompany us. This is one of the things that upsets me the most!

I know through family and friends that all children have their moments, but I also know that they can leave their children for a short while to get ready or do housework. Mine need constant supervision. They are so unpredictable and oblivious to danger despite everything I teach them, that it would be irresponsible to leave them for even a few minutes. It’s difficult to go to the toilet when I’m alone with them, let alone anything else. To be fair, my teaching days prepared me for that! I digress again…I do this a lot!

Parents of SEN children have to do soooo much preparation to cope with the day ahead, especially when thinking of leaving the house. Every eventuality must be considered with every potential trigger being planned for. Some people have scoffed at me, deeming this organisation unnecessary. On the most part, the structures I have put in place for the children mean that actually they behave and cope with situations well. So the likelihood of meltdowns happening have reduced a great deal. However, not including a pack of resources, not sticking to routines and failing to avoid triggers is not worth the risk. We still experience daily tantrums and complications, some of which are exhausting and exasperating, but generally life is more manageable when we keep things familiar.

It is very rare that people take the children out. They are at a point now where we are happier to allow people as we have put so many things in place to support them, but even then we have to pass over lots of advice. My eldest is very articulate and people think he is older than he is. However, with this comes the assumption that he is socially and emotionally advanced also, and he is not! He needs to be watched ALL the time as he will do very dangerous things, like collapse in the middle of roads or run into them. He also has lots of triggers, such as the sound of hand driers, busy places, bright lights etc. At one point these things would have triggered huge meltdowns, but with the work we have put in, he is coping well. Sadly, this sometimes lures you into a false sense of security, making it all the more shocking when he suddenly reacts extremely to something that he seemed to be coping with.

People can be quite belittling and invalidating, but at the end of the day we should always listen to the parents as they know their children the best.

Very often I get told there’s nothing ‘wrong’ with my children. I agree there is nothing wrong, they are just wired differently and need a different approach to reach the same end point as other people.

But I am not naive…I know what these people mean. They are suggesting that because on the occasions they see the children, they may be behaving well, they are absolutely not SEN. On the one hand I take this as a compliment, as the effort I have put in to help my children function in a world that makes no sense to them and does not understand them has clearly not been in vain. On the other hand, I find it insulting because it completely negates and invalidates everything I have to do to get us to a place where, for a very short time, the children can be around others and do ‘normal’ things.

You wouldn’t believe what some of my mornings are like when we are going out. The constant pep talks, preparation, reminders, role play, flash cards/visuals…and so much more! By the time we leave the house, I have nothing left in me, but then I have to socialise and keep a close eye on the children, intervening consistently.

Some people feel I am too hard and keep on at the children which infuriates me. If I didn’t, they would see very different behaviour from the children and then we would be judged for that.

One of the things I would like to reiterate is that all of this effort goes into getting the children ready to cope for a very short time. The longer you are around the children, the more obvious their needs become to those around them. Although somebody may appear fine on the surface for the short time you see them, please give some thought to just what a struggle it has been to get to that point and what is likely to follow once they have left.

I would like to end with a positive. As there are many. Once I managed to get both children wrapped in their towels and back into the bedroom, the three of us sat on the floor and just cuddled. I whispered, “I love you!” and my eldest whispered, “I love you too mummy.” We snuggled for ages and calm was restored.

My children are pure magic and I love them with all my heart and soul!

Food!

My children both have their preferences, as do most children, when it comes to food.

I have just ordered our shopping online, for the first time in forever, as normally they struggle if my attention is taken away for any length of time.

They helped me select the items and chose some ‘new foods’ to try. It’s basically the same old things…nuggets, fish, pizza, pasta and chips…all presented in different ways. I’m not sure if they will actually eat some of the things they have chosen but I felt it was worth a try! My eldest spent most of the time obsessing about cleaning his teeth as I forgot to do it with him this morning…so I won’t do that again. I can’t let him do it if I am not present, as he likes playing with, and eating, the toothpaste. I digress…

Texture is a HUGE problem. As well as appearance and smell. Everything has to be familiar. For my youngest, everything has to be dry!

I read a very fascinating article recently (if I can find it, I’ll add a link to this post) suggesting that parents ensure children are in the presence of a strong smelling food item they like when trying something new.

Smells can absolutely trigger my eldest in both negative and positive ways, so I am going to give this a try. I mean, it affects most people, let alone people with SPD.

We went to a local coffee shop recently and sat near the toilets as it was the only place large enough to house our monster pram. We still need it as my eldest gets very overloaded and tired, often needing to rest. Anyway, the toilets seemed to be very busy that day, and every time the door was opened, the strong smell of cleaning products overwhelmed us. I did not enjoy my latte and carrot cake as I just couldn’t taste it due to how distracting the smell was. A family member said it didn’t affect them, but the majority of us around the table struggled with the experience.

Reading and learning about ASD and SPD has made me realise that I myself am a sensory being, and some of the things my eldest does, I did as a child. Just not quite so extremely! I’ve also realised that as I am female, my social awareness was probably ‘better’. I picked up on the comments and funny faces people made, and knew to hide the behaviour better in future.

My son is usually pretty oblivious and absolutely not in control of his impulses, so he does not hide any behaviours. The good thing about identifying this about him, and myself, is that when people question why he does certain things…I already understand innately! The research I have done has helped me understand him, and myself, so much more, but more often than not, I can answer from experience without needing to consult a textbook!

As a small child (I believe I was 3 or 4) I had to be ‘gassed’ and have all of my teeth removed as they crumbled due to what I imagine was malnutrition. My mum said it was one of the most traumatic experiences, as I struggled against the mask and had to be held down. I hated textures with a passion and would store food in my mouth, tricking my mum into thinking I was eating. When I could store the food no more, it would explode all over the place. My poor mother!

Nothing they tried worked. I just would not eat. As an older child/teenager…I literally lived off of carrots, boiled potatoes and sauce. Very occasionally I would have pizza, but if the texture was wrong, I couldn’t eat it. As I got older, I was a huge vegetable fan and ventured into sandwiches and chips. I remember trying to share family meals such as bolognese, but I would spend most of the meal picking everything out of the sauce as I just could not stand the feeling of ‘bits’ in my mouth.

Thank goodness I had such an understanding mother, as most people called me fussy and said my mum was pandering to me. My mum did absolutely the right thing, as forcing me to eat would have probably traumatised me and caused some kind of eating disorder. My parents never gave up trying to get me to eat new things, but they were very patient and listened to me. My mum was always of the belief that you would never force an adult to eat something they dislike, so why should children be treated any differently? Children also have tastebuds that change a lot!

Although my children are very sensitive to textures, we have worked really hard on familiarising them with different food items. We have used all sorts of approaches such as food play, which was suggested by a nurse and health visitor. I was reluctant to do this as I am very hot on manners and was worried that the children would feel it was appropriate to play with food at the table.

Generally, they understand when it is and is not appropriate to play with food, but we have the odd slip up, particularly when my eldest is experiencing a ‘seeking’ day!

I am so happy they are not as bad as I was. As much as you would never believe it now, I spent much of my childhood and early teens underweight. I really do not want this for them.

The main fear for me is that they are not getting a lot of variety in their diet. I have been told not to worry as they are still so small, but I’m their mum so it’s kind of my job! My husband and I have done extensive research on diet, and feel a little uneasy about the amount of refined carbohydrates and hidden sugars they seem to consume. It is really tricky to address and balance this when there are limited food items they will eat.

On that note, I must go as my eldest is not coping with the amount of time I have taken out. He is craving some attention. He is desperate to clean his teeth again…it is not going to go down well when I tell him he has to wait until bed time!

Starting School

Lots of children are starting school for the first time today, as well as returning.

I received the most beautiful picture of my niece returning to school this morning. In fact, I was privileged to also receive photographs of every first day she’s had at school so far…and they melted my heart. You can see the excitement in her beautiful face, and she looks so smart in her uniform.

I felt so much pride looking at these photographs and then it dawned on me…we won’t experience this with my eldest child, at least not at the same time as everybody else.

We are embarking on home schooling, not through choice, but through having no other option.

We moved house after the school deadline and had to forfeit a school place that was too far away to get to. We were all set to move before the deadline, but our buyer pulled out on us the week of exchange, so we had to start the process all over again.

For those of you who understand what it is like to have a child with autism and sensory processing disorder, getting dressed and ready to leave the house can be a huge effort. Transitions are difficult, and new experiences can trigger all kinds of behaviour and meltdowns. As parents, we know it is likely we will be called into school to support our child, at least while he settles and becomes familiar with the environment. It is therefore imperative that the school is accessible. Travelling to and from school is likely to go well beyond the school run.

He is on the waiting list for two local schools but we have been told that as he is 4, and education is not compulsory until he is 5, we shouldn’t expect a place any time soon. I was even asked if I would be happy for him to wait until September 2020 to begin his school experience, but as he is academically bright, I feel this is not an option.

I have been extremely torn over him not starting school. A part of me feels that maybe it’s for the best. Socially and emotionally he is not like other children his age, so maybe he should stay at home a bit longer. It would give me time to work on some of the skills that hold him back, and I can’t say I’m exactly upset about getting to spend more time with him. However, I also feel it is a huge responsibility, particularly as his 2 year old brother is at home. And quite frankly, at times life can be quite exhausting.

Regardless, our reality is that he is not starting school along with everybody else, and a part of me feels quite heartbroken about that. His experience was never going to be a typical one but there is something sad about his introduction to education.

Starting school in the middle of an academic year is hard for any child, but for him it will be so much harder. He likes other children but plays alongside, rather than with them. Unless it’s a game from his toolkit that he has a script for of course. It hurts to think that he will be joining a class that has already bonded and formed relationships. He comes with his challenges so I believe strongly in getting support in place before he attends school, for his sake as well as his peers and teachers. However, I worry that he will also stand out a lot more, joining a class late.

I mourn for the absence of that first photograph in his school uniform. In returning years, we will have to compare with a photograph from a different time in the year, rather than at the beginning of the first term. That is something we will never have the privilege of experiencing, at least with him.

Bubbles

Bubbles are absolutely our favourite thing in the world…and we find they work on so many levels of the sensory system. Blowing, chasing, popping…

This particular mixture is apple scented so they smell great too! Mummy has worked out how to blow really large bubbles which the children are fascinated by! They love watching them float through the air, sparkling in a rainbow of colours.

Popping Bubbles
Sensory Play
Bubble Finger

Socioeconomic Factors

I had to share this because it is something I have discussed with various different people. Should socioeconomic factors be considered as an additional need, or something that should qualify children for extra intervention?

I believe so!

The article states, “The researchers emphasize that these findings suggest that interventional policies aimed at children living in poverty are likely to have the most positive impact on individual brain development and society.”

I do not believe that children from poorer backgrounds are in any way inferior or less able to achieve, but I do know from experience that some (and I am very careful not to suggest all) children do not have access to basic needs such as nutritious meals and heating, and I refuse to believe that it does not have an impact on wellbeing and the ability to focus on learning.

I remember teaching a little girl who didn’t want to go home because her family had no heating, having to choose between food and warmth. I also remember having to bring extra food in daily for a little girl who never had breakfast or clean clothes. These children were very bright but often unengaged, and who can blame them?

Some parents worked so many hours to provide for their children that they spent barely any time with them, and I also believe this has an impact.

Although this is an American article from 2015, I found this study interesting.

Some people deny that austerity has caused poverty, or at least exacerbated it, but this is the reality for many families, and in the long run, it does our society no favours! We are letting people down!

https://www.psychologytoday.com/us/blog/the-athletes-way/201503/socioeconomic-factors-impact-childs-brain-structure