Our guest blogger this week is Stacey from The Sensory Mum, who has written a fantastic blog about her daughter and their journey with SPD.
Stacey is a mother to 3 beautiful but insane children and a possible 4th in her husband, Matt. She started her blog, The Sensory Mum, after having her middle child diagnosed with Sensory Processing Disorder and needing a place to share her thoughts and feelings as well as engage with other parents in a similar position. She is a dreamer at heart and loves the beach, bush and all things coffee, chocolate and wine.
Our daughter Sienna is the funniest of our three kids. She makes us laugh that big throaty laugh that you can only manage when something hilarious takes you by surprise. She is kind and loving beyond measure. She is always concerned with doing the right thing and is the first to point out when others don’t. She is honest to a fault (I am pretty sure she gets that from me). She is beautiful and obsessed with pink and glitter and flowers. But, you would be forgiven if you saw her on a bad day for thinking otherwise.
Sienna was always different. From the day she was born she had her quirks. As her mother I knew there was something going on with her. By the time she turned two we had begun our journey towards getting her diagnosed with Sensory Processing Disorder. She has hit, kicked, bitten, screamed at and head-butted her father and I countless times. She has broken our expensive and most prized possessions and screamed “I hate you” into my tear filled face more times than I care to remember. As the parent of a child with Sensory Processing Disorder you never know what the day will bring. You are never prepared for the meltdowns, no matter how many you have been through. You still cry. You still want to hug them and make it all go away, even though they won’t let you anywhere near them. You still feel like your heart is being ripped out through your chest and you will never be able to put it back in.
Sensory Processing Disorder or ‘SPD’ is a neurological condition where sensory information that most people would barely notice (such as bright lights being on as you enter a room, or the very faint hum of a heater in the background), is processed incorrectly and somewhere along the way is diverted to the ‘danger centre’ of the brain. This sensory information can cause the person with SPD severe discomfort, often to the point where it can interfere with the way those affected are able to interact with the world around them. People with SPD often have different triggers – some are affected by touch, some sounds, some smells, every person experiences it differently. When over-exposure to these triggers occurs, it can cause the affected person to shut down and their brain to go into survival mode, telling them they are in danger. This is when meltdowns occur. Meltdowns are not tantrums, although to a passer-by they may seem similar. Meltdowns can involve the person affected breaking down completely, shutting others out, losing their temper, crying, screaming, lashing out in anger or frustration or a number of other responses.
People with SPD can either be sensory seekers or sensory avoiders, our daughter Sienna is a sensory seeker. Sensory Seeking has presented us with some challenges so far in Sienna’s 4 years of life. We’ve been woken at 2am to her running laps along the top of our lounge chair. We’ve heard her singing Frozen from on top of our dining table in the early hours of dawn. We’ve been to over 6 hospitals in our state multiple times for stitches and with dislocated wrists, black eyes and concussions. She loves the feel of toothpaste and egg yolk on her skin and we are forever washing these two things from her face and hands. She spent her toddler years forcing her body against the harness of her car seat for deep pressure and then just slumping back in to it relieved and ecstatic. She has bags and bags stuffed with anything heavy she can find and she frequently wanders the house with them all loaded up on her arm. She will run and run and run and run.
She is loud (but hates when anyone else is loud) and loves to sing. She cannot stand crowds or bright lights. This makes circuses, shopping centres, movie cinemas, kid’s concerts and carnivals a challenge for us. With two other kids in the family, it is pretty hard to avoid these things and life must go on. This is where the experience with triggers and preparation for the worst come in to play!
No two people with SPD present exactly alike, and some people suffer more than others depending on what their symptoms are. Because of these two reasons, it is really hard to define a list of symptoms that encompasses SPD, meaning it is one of those disorders that becomes hard to get a diagnosis for. Some symptoms are more apparent to the general public than others. For example, if tags on your clothing or wearing certain fabrics are your issue, then that is easy enough to avoid by cutting them off or not wearing them. If loud noises are your problem though, well you are resigned to living life with a pair of noise cancelling headphones on at most social gatherings- meaning everybody is aware of the issue.
SPD is still relatively new to the parenting world. Most people haven’t heard of it yet and aren’t quite sure if they ‘believe in it’ or not. People are uncomfortable with neurological conditions, they don’t understand what they can’t see. They want to explain away what is going on with your child and put it down to them ‘just being energetic’ or ‘just fussy’. Either that or they want to give you disciplinary advice because for sure if you tried the way they do things there wouldn’t be an issue at all. The truth is, we are more aware of what is going on with Sienna than anyone else in the room. We are always watching her out of the corner of our eye, we are always aware of where she is and we are always aware of the triggers in any given space. We notice even the slightest change in her tone of voice or the way she moves. We know the face she makes moments before a meltdown. We see that face and we get her the hell out of wherever we are.
She sounds like a ticking time bomb and I guess in some ways she is. But SPD isn’t all she is, she is so much more. She will go far in this world, a world that she struggles every day to fit in to. She is smart and tough and brave. She never takes no for an answer. In some ways, she is more prepared for success than the rest of us. She has already overcome some bigger challenges than a lot of people in the world will ever need to in their lives. She has already shown us what she is made of and now it is the rest of us that need to show her what we are made of. It is now our job to make this world a better place for her and kids like her.
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