1. Dropping your child off at a party and having them run off without saying goodbye

This is what happens for him:

Being invited to a party is a really exciting thing for most children, however my son finds it a very nerve racking experience. His internal dialogue goes like this: “It’s a new place, will it be noisy, will it be busy, how long will I be there and when will mummy be back?”

It means raised anxiety levels, “what if I need to go to the toilet – who will take me, who will look after me if I hurt myself, and will those hosting the party understand that I feel differently to others sometimes and I find things other kids enjoyment a bit scary?”

This is why:

My eldest has separation anxiety disorder which means that he struggles with change of routine and this includes leaving me to do new things such as birthday parties. He also has Sensory Processing Difficulties which means he finds busy social environments intimidating and overwhelming.

This is what happens for me:

Depending on the situation and where the party is depends on how heightened his anxieties are. It can start a day or two before the party and will continue until the party is in full swing or sometimes even until he returns home. 

This means even whilst driving to the party we don’t experience the same excitement that you have happening in your car. I get asked things like “how long will I be there?”, “when will you come back?”, “what do I do if I need to talk to someone?” “Will you have your phone on and who has your number?” I spend the car journey reassuring him he will have a great time, it’ll be fun but not to worry I can always pick him up early if he needs me to. All the while I’m wondering to myself how long he will last, how long before I get the call “can you come and pick him up as he’d like to go home”. 

2. Cuts and Bruises

This is what happens for him:

Imagine being in the park and seeing an 8 year old fall over and start screaming and when I say screaming I mean like his leg must be seriously cut or even broken. It’s that noise that has adults all around look to see just how bad it is. You assume that he must have really hurt himself from the crying and his reaction, but you look and see there isn’t even a cut – just a small graze so why is he screaming like that?! Well, because for him, even though the visible injury is minor it REALLY hurt when he fell down. He is in real pain and his emotional regulation means he doesn’t know how to handle this feeling of pain and it’s scary to think when will the pain stop.

You might see him hit out at me when I try to console him. He does this because it hurts and he can’t stop it hurting, and while he wants my reassurance and comfort, his leg hurts and he just can’t think about anything else… until finally, it slowly stops hurting and I am able to clean it and pop and plaster on then he clams and can eventually go back to playing.

This is why:

My son has something known as Tactile Defensiveness which means that his pain receptors are more sensitive and over-responsive than ours so he feels more pain than we do. So a seemingly small cut for him is like a deep gash for us.

This is what happens for me:

I hear it before I see it;  the scream, that noise that instantly means something bad has happened and I need to get there quickly. But it’s a noise that, whilst it totally alerts me to help my child, it doesn’t allow me the knowledge that it’s not a broken arm cry, and it’s not a serious injury. I don’t have the luxury of being able to identify if it’s serious or not because all injuries come with the same “it really hurts” cry and requires a soothing and caring response. There is no “up you get – let’s give it a rub better” in my world. 

However, there are a lot of raised eyebrows, whispering and talking behind hands as other parents can’t work out why a child of this age is “making such a fuss”.  I have the knowledge that he isn’t doing this to cause a fuss – he just can’t help it but you don’t know that, so you just assume that he’s behaving like a baby and I’m pandering to him and we are both being judged.

You see me go over to comfort him, assess the situation and start take the necessary steps. But then you see me get hit, shouted at or pushed and wonder why I don’t reprimand him because that’s not OK. I can feel you looking at us and wondering why I’d allow him to behave this way and I just wish I could explain it all in just a look, and replace that judgement with compassion, and support. For the parents of “special” children, the judgement is actually worse than being pushed, hit or shouted at because we know our children can’t help it – and what’s more, they really don’t mean it…

3. Socks and trousers (amongst other things!)

This is what happens for him:

Trousers irritate his legs and he hates having any fabric below his knees as it really stresses him out and makes him anxious, uncomfortable and these are to be avoided at all costs…

It is never too cold in his world. Even if he has long legged PJ’s, they will be pulled up to his knees, because nothing must go below the knee, ever. 

Socks however, are an entirely different ball game. They have a seam that touches his toes, and if that happens to go underneath the toes, it REALLY irritates, is uncomfortable and it HAS to be fixed immediately – no matter where we are or how late we might be.

This is why:

This is down to tactile defensiveness again and the seams in socks, long sleeves and trousers can feel as extreme as a razor blade for some children but for others can be more a dull but constant nagging desire to remove it. 

Either way, my Son is unable to tune out the irritation and it becomes all consuming. Imagine having pins and needles constantly and not being unable to get rid of it – that’s what long trousers, seams and long sleeved tops feel like to him.

This is what happens for me:

When we leave Dubai and go back home I have a child in shorts with blue legs! You can’t buy seamless socks in Dubai and I stupidly didn’t get any whilst I was at home last summer but what I did do was buy a new brand of school socks and have been kicking myself ever since as getting ready for school each morning means at least 10 minutes of messing around with his socks until they are acceptable (not comfortable but acceptable). 

I’ve given up spending money on long sleeved anything or long trousers as they would simply just end up being handed down unworn. I always worry about him catching a cold or sick but I just can’t put him through the trauma (and yes it is trauma) of being forced to wear them if it isn’t absolutely 100% necessary. I’m not sure how this will work when he’s an adult though!

4. Shopping malls, grocery shops and cinemas

This is what happens for him:

People, lights, germs, smells, noises, being forced to stand or stay in one place for extended amount of time its torture! It’s simply unbearable. He doesn’t like it, struggles to deal with it, and becomes agitated, frustrated and sometimes even angry. 

Shops are torture like you can’t imagine; the people get too close to him and that makes him worry about germs, the trolley is too dirty, people touch him as they want to get past (or they touch his sister), and either way it’s not ok as it’s scary and he doesn’t understand why anyone would touch a child when they don’t want to be touched.  

The cinemas are always too LOUD, it hurts his ears. To the rest of our family it seems ok but for him it hurts, and he’s not making it up when he says it actually hurts his ears. If the cinema is quiet, sometimes they will agree to turn it down a little, otherwise he will either sit with his hands over his ears feeling anxious and overwhelmed or we are forced to leave early because he just can’t handle it anymore.

This is why:

This is called auditory defensiveness; It means that the brain over-registers sound so the cinema is too much. The shops are full of germs (there’s no denying it) and I totally understand his fears but that doesn’t help make it easier. For children like Oscar, their nervous system is on the brink of fight or flight and unexpectedly loud sounds can be overwhelming and can send the sensory system into overload. 

The same can be said for people in our personal space. People who unexpected touch can feel like fire on his skin. It isn’t welcome and it is very scary.

This is what happens for me:

In situations like this, he will bury his head in my tummy (thankfully it’s nice and round and soft), cover his ears and will often shout, or make loud noises to try and drown out the sounds around him. In extreme situations he will shout, cry, run, panic and have what looks to everyone like a toddler tantrum.  

He has no control over his reactions as they are entirely fear driven and he is beyond frightened. Whilst none of this is a major issue for me, most of the time it does raise a lot of eyebrows I’ve noticed!

5. Eating out

This is what happens for him:

There are sounds, smells, textures that make him uncomfortable. A little one at the next table who keeps screaming, a waitress who drops a tray of dishes, shouting or loud conversations or simply even just a busy restaurant are all over stimulation. Add to that bright lights, new smells and new food textures and it’s a whole world of sensory overload. 

Plus add in actually being asked to SIT for an extended period of time in one place with no space to move and eating out is like a modern day form of torture for a lot of our “special” children. 

He has developed coping strategies though, and these can save us when necessary and often involve putting his legs up on my legs in my lap, climbing on me, touching me, fidgeting with me, and all of these gives sensory input which will help soothe and calm him.

This is why:

There are a number of causes for this but one key element is that his vestibular system is under developed and this means that he seeks to (and constantly needs to) move.  It’s like having to move your leg when you have pins and needles. It isn’t something that he has any control over; he just needs the input to help him cope.

This is what happens for me:

I can become a climbing frame, a source of grounding, (his legs on mine, constantly fidgeted with me) which most of the time I have learnt to tune out. However, sometimes it becomes too much for me too and I just want to eat in peace, to just be able to sit and not be fiddled with! I become sensory overloaded too – After all, I am not an activity centre! However, I normally just take a deep breath and let him carry on because if I don’t, he will become frustrated, anxious and this will normally lead to some type of melt down which will cause a massive scene and I don’t have the energy for that because that means I will be subjected to “the look.” 

6. Waiting in line

This is what happens for him:

A bit like sitting in a restaurant, this means restriction on movement exacerbates the need to move but there’s no space around which means he needs to be resourceful. So bouncing up and down, leaning on me, rocking back and forwards and twisting round and round all offer some sensory input and makes the wait slightly more bearable. 

However, if we are forced to wait for extended periods of time such as airport queues, this means acting out, raised anxiety levels, not enough vestibular or proprioceptive input and too much noise and too many bright lights. 

This becomes very challenging and distressing and he needs to find a way out ASAP and that’s when it becomes difficult. All he knows is its too intense and he HAS to move, lots, now!

This is why:

Whilst he is a sensory seeker, he can still suffer from sensory overload from the bright lights, lots of people moving around or too much chatter going on and this can become very overwhelming. This situation will see him flapping, skipping, jumping and spinning to boost his vestibular or proprioceptive input and the type of activity he does becomes increasingly more obvious the longer the wait and therefore the more stressful the situation.

This is what happens for me:

This is one of the hardest situations for me to manage as he can be inclined to flap,  jump, spin, skip and will often bump into people because of his lack of awareness of body space. If you are waiting in a long line and the child behind you repeatedly bumps into you, you will, (like most people) become irritated and wonder why I, his mother am not stopping him and making him stand still. I try. Trust me I really try to minimise the disruption to others, however sometimes his flapping and spinning is the only thing that will prevent a full scale meltdown which would be far more unpleasant for him, me and for you than the flapping – and of that I can assure you.

7. Changing school year

This is what happens for him:

This is a rough run down of his internal dialogue that continues for about 3-6 weeks before the start of each new school year. “It’s just too scary having a new teacher, what if he/she doesn’t like me, more importantly what if she doesn’t understand me?  He/she might not let me have my movement breaks. What if I need to go and see my learning support teacher; will he/she let me? What if the classroom isn’t nice? What if I don’t have enough space, will my fidget cushion be there on the first day? I’ve been home with you mummy for weeks and I don’t want to leave you!”

This is why:

Well the whys are really easy he has separation anxiety disorder (SAD) and due to the holidays h has been with me for weeks over the summer holidays and is now being taken back to school. This raises his anxiety levels to a point of almost no return. In addition to the Separation Anxiety, the return to school is now a change to our new holiday routine and like many sensory children he doesn’t like change, because change is scary.

This is what happens for me:

The 3-6 weeks before school starts I have a child on high alert; he is a walking, talking ball of anxiety and stress. He is unable to regulate his emotions and reactions – and he is in full blown ‘fight or flight’ mode. This is not fun! It also means that come day one of the school year (and for at least 3-4 weeks afterwards) we have rather distressing, upsetting and challenging scenes at drop off. 

He will run out of class to follow me when I leave, he will scream, shout, hit me (see above) and various other forms of acting out because he finds it very hard to verbalise how he is feeling and what exactly is it that’s so scary because let’s face it, it’s all scary. 

This is a really tough time for me because it breaks my heart to leave my little boy every single morning feeling upset, distressed and anxious. 

Then there’s the other children. He is now of an age where they have become far more aware of each other’s behaviours and I worry that he will be bullied for crying, becoming upset, getting angry and when I am eventually able to leave the school after all of this has happened, I feel broken inside but I know I have to put on a happy face for pick up and have to do it all again tomorrow.

8. Shaking hands and giving hugs

This is what happens for him

Germs! Shaking hands with someone means that they will transfer their germs to him and he absolutely does not want that. In fact, he will go out of his way to avoid it, refusing to shake hands with peers, doctors and other well-meaning people. 

He will also actively avoids giving hugs to anyone – except me or his Dad. Rarely his sister but absolutely, and most definitely no one else. No one else is allowed into his personal space unless they are invited and they have to be very, very special to him. If anyone does try to give him a hug this will immediately raise his anxiety levels and he will lash out. Yet interestingly he will be physical with people in different ways, climbing on them, toughing, grabbing and generally being in their personal space whether invited or not.

This is why:

His proprioceptive system is under developed; meaning his awareness of body space isn’t as acute as yours of mine and he has little concept of personal space and body awareness. He actively seeks proprioceptive input, climbing on people and grabbing them which provides deep pressure touch which can be soothing and calming to his nervous system. Shaking hands and hugs don’t provide the same proprioceptive input.

This is what happens for me:

I am his human climbing frame especially in difficult or challenging environments; you may even in some situations see him grab my breasts. This is far from ideal and something I actively discourage, however it isn’t something he is doing to be naughty – it’s something he does to make himself feel less anxious, less overwhelmed, less fearful (oh and they’re squishy apparently).  

When he was younger and before I knew all about his SPD, I, like many other parents used to encourage the whole “give granny a hug” thing. However, I’ve learnt, (and I’m glad that I have), that children are entitled to say no – whether we as adults like it, or not.

If someone forces their way into our personal space we consider it assault, however we allow people to do this to our children because it is deemed acceptable. It isn’t! 

Yes, I find myself in situations where someone (for example a doctor) will try to shake his hand and I have to say “sorry he doesn’t like to shake hands”. I get “the look” but I know that it upsets him so much that I don’t care. His phobia of germs is becoming increasingly worse and impacting all elements of his life sadly. 

9. Your child just sees a Christmas tree

This is what happens for him:

I recently discovered that he sees Christmas trees differently to how I see them! I see a nice looking Christmas tree as a symbol of the upcoming festivities and a place under which we put our gifts. He sees a sensory tower full of flashing, sparkling, textural fun and he apparently thinks that the sparkly star on the top is actually the prize and you must climb the tree to retrieve the said prize! 

This is why:

As a sensory seeker he loves textures, lights, sparkles etc and a Christmas tree has all of the above. 

This is what happens for me:

NO Oscar! I mean seriously NO! It’s a 15 foot tree which will collapse in a heap with you underneath it, so why must you do these things? 

(Ok I know why, but really!) However, there is no time to think; I have to stop you before you get started and it gets horribly messy and you get hurt. But my hands were full, there were people everywhere, you were two paces ahead of me and I couldn’t get to you in time – so what did I do? I shouted! I had no choice so I screamed “NO!” across the lobby. 

Of course you didn’t hear me, you had your eye on the prize…the star at the top! It was really nice and it sparkled A LOT, so I am forced once again to yell…. NO! And that’s when it happens; I get ‘the look’ from several Mary Poppins type mums whose children weren’t attempting to scale the tree in reception. Hey, at least we didn’t destroy the tree 😉

10. The knowledge that your child will grow up to become a “normal” adult and live a “normal” life

This is what happens for him:

He knows he’s different and he’s cool with it. He know he’s loved and that’s the most important thing of all.

This is why:

He has SPD, OCD & SAD – and it’s a fact that most “normal” people don’t.

This is what happens for me:

This is something that catches me by surprise at times. Sometimes I see him bouncing around the supermarket and I wonder ‘what does this look like at the age of 20?’ I see him with his hands over his ears in the cinema and I wonder ‘will this ever not hurt?’ 

Will my amazing, clever, funny, loving little boy grow to be a man that someone can, and will love forever? Will someone treasure him and give him the future he may long for and definitely deserves? What does the future hold for him? Time will tell.

Read more:

My story – Oscar and Autism by Andrea Jane Guy 

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