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by Jenna Schade
June 13, 2019
I clearly remember the day my (then 5 year old) Chloe randomly blurted out "I just don't know why they need so many lights on at the shopping centre".
Why hadn't she simply told me this sooner!
It's like I hadn't even considered that the same shopping centre I was in, could be experienced by someone else in a very different way to me.
I'm sure she assumed that everyone felt the same about shopping centres too!
This was after years of shopping centre trips being stressful and hard work. I always thought "what am I doing wrong?" and "why is this such a horrible experience every time?"
She would suddenly flop to the ground and refuse to take another step (a stroller was a must, long after she grew too big for it) but wouldn't tell us why... as if her body just shut down and her muscles were super heavy. Sometimes she would become hyper for no obvious reason... constantly grabbing at me, talking non-stop, hanging upside down off the shopping trolley, and even licking random things like mirrors. It was different to a tantrum as there were no demands or outcomes she asked for. She simply became "disregulated" and grumpy... which we later learned was the stage before her 'fight or flight' response kicked-in, but with very little warning, so we had to get her out of there FAST!
I remember that moment when she told me about the lights in the shopping centre SO clearly, because it was a turning point in our relationship with Chloe's (SPD, ASD & Anxiety) brain and in our understanding of this new neurodiverse world we were thrown into. Suddenly we felt this obvious gap between society's expectations of the "norm"... (the pre-programmed view of what life should play out like)... and what our family now wants, needs and lives every day. The adjustment took a long time... the realisation felt huge at the time. We had to significantly alter our ideal, planned out future (which had been based on our own perhaps narrow views and what we had seen in the movies).
I can say this now... some years later... but oh what a blessing that we have THIS future now, THIS family, and the opportunity to grow and learn together. We now have this incredible mirror being held up to us in the form of a stunningly different, blonde-haired, blue-eyed cheeky monkey... full of ideas, creativity, empathy, love and loyalty.
Do we always love that mirror being held up? Well no! Do we enjoy seeing our sensitive little girl hurting in her heart or feeling yucky in her own body? Nuh-uh!
But our situation forces us to look within, get creative, and slow down as we consider the impact of everything we do and every decision we make. It forces us to love deeper, connect more, and even look after ourselves more, as Chloe feeds off the energy we each bring to the house. What . a . blessing!
For this blog I will explain Chloe's experience with visual stimulus. The subtle signs were there... before she could articulate her feelings or understand her own overwhelm.
She is SO visually sensitive! You can tell by how much she looks down... or makes sure her back is turned to the busiest area of the room or playground.
I remember when she started to get headaches... she was almost 3 and it was summer... we had moved to a new house and she was spending way more time outside at that age, and she loved our new garden with swings, a sand pit, soft grass and vegie gardens (she was always looking for bugs, worms, lizards and birds). I remember her worst headache when she had just come in from the garden and was on the floor, curled up in a ball with her forehead on the carpet, crying in pain and shielding her eyes from any light. She was often wiped out by these headaches and slept for hours as soon as one hit (even if it wasn't her nap time... or even if she had grown out of having day naps). We didn't know it at the time but it turns out she is extremely sensitive to sunlight... and years later she was actually diagnosed with Photosensitive Epilepsy (with absence seizures and myoclonic seizures).
I remember when she was 4, her kindergarten teacher mentioned that Chloe always leaned right over her work when sitting at a table to do writing or puzzles, as if to block out the glarey fluro lights above her. The teacher then started turning off the fluros and using natural light from windows, but made sure Chloe wasn't facing the windows when seated. I also remember the kindergarten calling me to come and get her (mostly from about 2pm) at least once or twice a week during the warmer months... due to one of her big headaches.
I remember when she was 5, when we started to reduce her visual overwhelm at home by decluttering, in the car by blocking out her window with a heavy shade, and at school by asking for a decluttered classroom (and by moving her to a much smaller school with less students and staff overall and only 20 students in her classroom compared to 30 in her original school). These changes were part of bigger changes we made during that season, with every piece of the puzzle helping her recover and increase in happiness and confidence.
I remember when she was 6 and she did a season of evening hockey with dozens and dozens of kids running everywhere, multiple coaches, fast moving white balls and very bright stadium lights. I can't begin to explain the level of meltdowns and signs of utter distress for her. We pulled the plug on that one very quickly.
I remember last year and again a week ago (after a long break from screen time at home, then it crept back in recently) when we realised the huge negative impact that screen time has on her brain and her mood... even more than her peers... and not just due to increased seizures, but also due to her having to process SO much visual information! Not just shapes, but also color, orientation, and motion!
I can tell you how much she benefits from a visual break at school or at home, with simple tools like hideaway tents and dark lycra swings that wrap her like a cocoon, letting her escape for a short time.
I can tell you that the patterns became clearer to us when she would have a meltdown immediately after going through the very busy, crowded waiting area at school at drop-off and pick-up times (we just got creative and made sure she never goes through those areas now). Shopping centres, indoor play centres, markets or carnivals/fairs would leave her with a horrible "sensory hangover" for days... so it's a no-brainer... there are plenty of other fun things we can do as a family 😊
I have to remind myself and others... if you see her looking down, or away, or she starts to shut down or forget what she was doing... don't assume she isn't listening... don't assume she doesn't care. Throw away your expectations and comparisons... and imagine having to work just that bit harder at things that come naturally to most.
She is perfect... she is a mini-me more than I realised... and she keeps me grounded ❤
P.S. Do you think your child may be hypersensitive / over-reaponsive to Visual Input? Here are some signs, as per the SPD Australia website (www.spdaustralia.com.au) : 1. sensitive to bright lights; will squint, cover eyes, cry and/or get headaches from the light 2. has difficulty keeping eyes focused on task/activity he/she is working on for an appropriate amount of time 3. easily distracted by other visual stimuli in the room; i.e., movement, decorations, toys, windows, doorways etc. 4. has difficulty in bright colorful rooms or a dimly lit room 5. rubs his/her eyes, has watery eyes or gets headaches after reading or watching TV 6. avoids eye contact 7. enjoys playing in the dark
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by Jenna Schade
February 08, 2020
In our family, self-regulation has not come naturally. From an early age we noticed that our Chloe needed a lot more help from us to manage her thoughts and feelings… especially at bedtime.
I remember the first time I noticed how other children her age were starting to control their impulses, manage their attention and organise their behaviour whereas she would struggle.
Despite giving Chloe the same co-regulation opportunities as her older sister, despite the responsive and warm interactions we had, despite giving her just the right amount of support, despite my coaching and modelling efforts, she just never seemed ready to self sooth or to truly trust the adults in her life.
by Jenna Schade
January 13, 2020
I didn’t realise that socks were that important, or even an issue for our Chloe. She didn’t complain very often. She was just overloaded and crying by the end of most days, and she avoided socks and shoes in general.
Over the years I’ve heard from many Occupational Therapists that it's rarely just one thing that causes overwhelm and dis-regulation, but rather the cumulative affect of many irritants or missed opportunities to reset or regulate the sensory system during the day.
One day I thought to actually try some of our soft, seamless Sensory Socks on Chloe... and they instantly became one of my little secret weapons!
by Jenna Schade
August 13, 2019
This year I had the eye-opening experience of trying Speech Therapy with Chloe for the first time, and oh my goodness I really didn't understand ALL that these amazing human beings can do 🙏
To quote the senior therapist and business owner of the practice we attend... she does SO much more than just 'fix lisps'... "I am a champion of children, I believe in them, I will never give up and I will help them overcome whatever challenges they face; to become all they can be" ❤