DISCLAIMER: This post may make you cry!!
As you’re aware, last week my blog post was focused on mental health and emotional development. So for two further weeks my aim is to raise awareness on both topics. This week my focus is developmental disabilities. I am featuring 4 amazing and incredibly courageous mothers and their sons to help others step into the shoes of their children who’s behaviour often gets misinterpreted for being “naughty” or inadequately disciplined. It’s so easy to walk past a parent and their child in the supermarket and pass judgement. However, moving forward I want you to take a second to consider that this child may have a disability.
As a Children’s Services Practitioner I work with children and adolescents who require a tailored intervention to support, safeguard and empower them to make pro-social decisions. Many of the young people I work with have developmental disabilities and are often labelled as “disruptive, naughty and rebellious”. It is my role as a practitioner to advocate on their behalf to ensure they’re receiving the appropriate medical intervention and support from the relevant agencies including Child And Adolescent Mental Health Service (CAHMS) and Young Minds. I am by no means an expert in this field, however I am passionate about raising awareness on such topics which is why I am so excited about sharing this post with you.
SPD is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. Some people with sensory processing disorder are oversensitive to things in their environment. Common sounds may be painful or overwhelming. The light touch of a shirt may chafe the skin”. (Moni, Psychologists) Blog & Instagram
Demand avoidance disorder or PDA ie Pathological Demand avoidance is a behavorial trait or profile that is seen in some individuals on the autism spectrum. This demand avoidant behaviour is rooted in an anxiety-based need to be in control. Most cases of PDA cause a heart murmur (an extra or unusual sound in the heartbeat), which a doctor can hear through a stethoscope. A chest X-ray may also be necessary to see the condition of a baby’s heart and lungs”. (Moni, Psychologist).
ASD is a developmental disability which affects a persons ability to communicate socially and therefore relate to others. It is a lifelong disability and is a spectrum disorder commonly referred to as Autism. It impacts how they view the world and requires a formal diagnosis as it impacts their development and learning. (Gurpreeti K, Trainee Psychologist) Blog & Instagram
M, Age 8 (Sensory Processing Disorder, SPD)
Inside my head is a funny place. I don’t think it’s the same as inside my friend’s heads. Sometimes it is hard for me to say what is happening inside my head and what I think and how I am feeling.
You see, the world is sometimes a bit too loud for me. It can be a bit too hot for me, there can be too many people. Big bangs and loud noises when I don’t expect them make me want to scream and cry. They don’t seem to annoy other people like they annoy me. Other people think they are funny or don’t worry. They make me want to run away and hide, or stop what I am doing and cover my ears.
I don’t like it when there are too many people around me, and it’s hot, noisy and busy. It makes me feel scared inside. My mummy says a lot of people feel this way, but it is worse for me. We have a secret code for when I have had enough of a place that is too busy. I go to her and I squeeze her hands really tight. She knows this is me telling her I am done and we need to go. Sometimes she works out I need to leave before I have and helps me to get away.
I don’t like being touched, or people hugging me, or being sweaty, or too hot. I don’t like strong smells, and places that are dark with lots of noise and light make me very worried. I find it hard to go on the trains, and hot and busy buses make me very upset. I find it hard to switch my brain off. Inside my head can feel very busy and noisy even when it is quiet around me outside my head. This makes it hard for me to concentrated sometimes and I get frustrated. It makes going to sleep very hard. If I have had a very busy day or been to a new place, or tried a new thing, it can take a long time for my brain to stop me thinking about that.
I am often very tired after school because even though I like school and my teachers and friends, I find a lot of what goes on hard for my brain to work out. It can be noisy and busy and hot, and I have to work hard to be able to move from one task to another, and if I am not finished something I often feel sad that I can’t and have to stop. I like to play games and work with other people and my friends but I want them to stick to the rules and play nicely and I get very sad and upset when they don’t. When I come home I feel safe so I often cry or get cross because I am tired and it has been a hard day, and my Mummy has to help me calm down. Sometimes when I am feeling tired or worried, my tummy hurts and I feel sick. I try to tell grown ups, but they often don’t understand. My mummy knows that if I say I feel sick, that it doesn’t always mean I have a tummy bug, but that I am worried or need to talk about something in my head.
I don’t like big changes or things not being the way I am used to them, and it can make me frustrated and angry, or very sad. I try to understand but sometimes I can’t. I like it when things are explained and people stick to the plan. I am learning to tell someone when I am upset by a change in a plan but sometimes I can’t. Inside my head is a funny place. I wish more people could see that I am not being naughty or bad, but sometimes I just can’t find the right words to explain, so I hold it all in. Holding it all in is hard. I wish I didn’t have to, and sometimes I forget to. I wish people could understand and see inside my head a bit more, and see.
My mummy says that my brain just works harder at some things that other people’s and makes things work a bit differently and that it makes things harder for me. I like being me, sometimes, but sometimes I wish I didn’t have to hold it all in.
Little bear, 8 (Autism)
Hi there, my name is ‘Little Bear’, I’m 8 years old and have been diagnosed with autism. For those of you who don’t know what autism is, it’s a lifelong developmental disability that affects how I communicate and perceive the world around me.
Autism has taken my voice away and I struggle on a daily basis to communicate with those around me.
Imagine waking up every day wanting to talk to your loved ones and share in their conversations but not being able to. Imagine waking up feeling sad and not being able to tell someone that you had a nightmare last night and were scared during the night. Imagine wanting to tell your family how much you love them but not being able to get the words out. Imagine wanting something so badly but not being able to tell someone what it is you want. You try so hard to get the words out but no matter how hard you try they won’t come. You start to get so frustrated and angry with yourself because the things you want are so close yet so far because no one understands what you’re trying to say.
I get so frustrated that I have no control over my emotions or my body and will scream and cry in anger, I will start hitting things and often hurting myself because my body has been completely taken over by my emotions that I very often don’t understand. People will stare at me and judge me for my behaviour, all too often labelling me as being a child whose parents have not disciplined, a child who has no manners and is very naughty.
When you give me that disapproving stare it hurts my parent’s feelings, they try their best to keep me calm but all too often I find my environment too overwhelming and will react the only way that I know how to communicate my emotions. Please don’t judge me when you see me in the supermarket and I’m crying and screaming, the lights are too bright, the noise is too much, inside my head it’s like I have 100s of tabs open and they’re all playing videos at the same time but yet I can’t close them.
There are so many people around me that I start to feel anxious and my world feels unsafe and unknown to me as I’m no longer in my home where I can shut all these things out. I might behave very differently to other children around me but inside I am exactly the same as all the other children. I have the same wants and needs as them, I love to run, jump and play just like any other 8-year-old child. I still want to be able to play with children my age, but I don’t quite know how to approach them, my eyes light up with excitement when I go out to play and I want to run around with the other children, but they don’t understand me, and I don’t understand them.
The world can often seem like a scary and unknow place to me and this makes it hard for me to be out and about so please be kind and patient with me as I make my way around learning how to cope with the world that I so struggle with.
Always remember that different is by no means less.
Z, Age 5 (Autism)
I am 5, I’m not like other 5 year olds. For one I don’t talk to you. I may make noises and can repeat things and read anything but I won’t talk to you and I won’t acknowledge you unless I really know you. When we go out with my friends sometimes everything gets too much for me, the noises from children screaming, the background noise including the radio playing, and it all gets to me, the only thing I know how to do I throw myself on the floor, this means I get removed from the noise and into quiet. I like quiet. This is why I don’t really like to go anywhere new. I don’t play with my friends like they play with one another, but I enjoy watching them. I like to laugh at them and run, I love it when they chase me but can’t catch me because I’m faster than them all.
I’m not like the other 5 year olds I can’t ride a bike, I can’t kick a ball and I don’t know how to play games with them. Sometimes other children look at me funny, they laugh at me until recently I was still in pull ups and was called a baby. I’m not a baby I can do my numbers even my 17 x table and I can even spell xylophone. Babies can’t do that can they.
People always look at my mam when I run away and she is shouting at me, it’s not that I can’t hear her, but the water is so much fun, it doesn’t matter that I have to run across the car park first I don’t see danger only what’s in front of me and when I have my mind set on something I have to do it. I don’t understand why I can’t go for a paddle in the river.
Everyone always takes notice of what I can’t do, but no one ever notices what I can do because I don’t tell them because I don’t like to speak to anyone, just because I don’t talk doesn’t mean I’m stupid though.
Any where new… this is because I like to know where things are, what the chips taste like because when they are served in the same dish they are the same and I know I like them. I’ve gotten to know the place. New places can be louder and brighter, the chips are not the same and I don’t like things not being the same.
R, Age 12 (Autism, with demand avoidance traits)
I woke up this morning feeling unhappy. My sister is going away on a European Trip with the school. I don’t understand. It’s the weekend and she should be
with her family at home. I don’t understand. I went to the school to see her off.
There were lots of people there all looking excited. Why are they excited? I don’t understand. When I get home, it is quiet and I have my mummy and daddy’s full attention.
I don’t want to go to bed because it doesn’t feel right. I shut the outside world out and cocoon myself in my own little world. It’s safe in here, it’s predictable. What are those voices that are trying to invade my safe place? Daddy sounds different. Who is he telling me that I’m ignoring him? I don’t understand. Mummy is talking to me but her voice is really quiet. I have to listen hard to hear her and that means coming out of my safe place. I don’t want to do that! My bedroom is my place so I’ll take myself there. At least then the voices will stop. Now I’m on my own and my sister enters my head. I miss my sister. She should be here with her family, with me. Why did she want to go away? Why has she left me? I don’t understand.I feel sad and worried. I want my sister home. What happens if something happens to her? Why do people want to go far away from their family?
I don’t understand. My mum has come into my room and is talking to me. Why has she come into my safe place? I just want my sister home. Why have things had to change? This doesn’t feel like my safe place anymore because things have changed. I don’t know what to do so I don’t do anything. I don’t feel in control.
I wrap my arms around myself and start rocking. The movement is familiar and comforting. I feel odd and my mum tells me that it’s ok to miss my sister because that shows that I love her. Of course I love her, she’s my sister. Why has she gone away? I don’t understand. How can I go to sleep when things don’t
feel right? My sister is missing and it doesn’t feel right. I don’t understand. I can’t do the things that I know I should be doing. Everything sounds so loud that it hurts my ears. Things just don’t feel right. There is no order. Without my routine I feel lost, I feel out of control. When I’ve felt like this before, adults have been angry with me, they tell me that I’m naughty. How can I be naughty when things don’t feel right? I don’t understand.
Why do people do things that are wrong? Going away from your family is wrong. Not sticking to the rules is wrong. Why do I get into trouble for trying to tell people to do things right? Rules are rules. People should follow the rules. Night time is a scary time for me. I don’t like the dark because I can’t control it. I’m not in control of my dreams and that makes me anxious. At least that’s what mummy tells me. I just know that I don’t feel right. I don’t want to go to sleep. When I’m awake I’m in control of my thoughts. I know that mummy and daddy want me to go to sleep but I just can’t. I hope that my mummy and daddy understand that I’m not being naughty. I just don’t know how to be any other way.
I am autistic with demand avoidance traits and I see the world differently. I have an anxiety based need to be in control. If I don’t have that control, my anxiety takes over and I panic. Please understand, I’m not naughty, I don’t want to be naughty. I don’t understand the world the way that you do. Please help me to cope. Please give me choices so that I can have control of my world. Please don’t judge me and don’t judge my parents. They understand my need for control. They are not letting me be naughty, they are just picking their battles in a way that helps me to cope with the world.