Updated: Feb 3
Imagine being taken to a party in an unfamiliar, noisy environment. Imagine hearing the thud thud thud of children's feet around you, clinking of glasses, incomprehensible words of grownups and different food smells. Imagine shapes, shadows and patterns you can't quite make sense of surrounding you as you sit on a rug, not sensing a parent or familiar toy nearby. Suddenly, a rough, wet tongue licks your face, you feel warm breath on your ear and you are knocked backwards, hitting your head on the floor behind you.
As you can imagine, Luka was petrified in this situation. When I think back, knowing what I now know, it's no wonder Luka had what is termed a "CVI Meltdown". I still remember the urgency and fear in Luka's cry that I hadn't heard with my first child.
What is a CVI Meltdown?
A CVI Meltdown has been described as where an individual is overwhelmed by sensory input and is no longer in control of their actions. More than just a tantrum, a CVI meltdown is likened to "a child's reaction when they have their fingers slammed in a car door" or "a child who sounded like he needed an ambulance". CVI Scotland's website has provided some fantastic information on common triggers, effects and strategies as well as personal stories and is well worth reading.
One of the first videos I watched on CVI was Nicola McDowell - My CVI Journey, an incredibly powerful presentation that beautifully describes the challenges of a person with CVI in preparing for dinner in a restaurant with friends, leading to a possible CVI Meltdown.
"If I [have] a busy day, attending a scene that is hard for me to see, then I get to the restaurant tired and that's even harder for me to process what is going on.... I also worry at what point I will become too fatigued to make sense of the visual scene around me and not be able to string a sentence together. Because when I become too overwhelmed I can't talk, I can't think. My cognitive abilities will abandon me... As you can imagine, this level of anxiety has a huge impact on me and this is before I even leave the house. So, by the time I arrive at a restaurant, I am often incredibly stressed, exhausted, emotional and very close to CVI meltdown..."
Nicola goes on to explain the strategies she has put in place to manage these situations, then relates it to a child's experience:
"Now imagine a child with CVI trying to go through life and having to face a somewhat identical experience to that of me going to a restaurant, almost every day in their classroom environment... We can work together to build strategies to help ensure that every child is meaningfully engaging with the world around them in whatever context best suits them. We need to show these children that the world does not have to be so scary."
Strategies for dealing with a CVI Meltdown
While some adults and older children may be able to recognise triggers and take preventative action, I have used some of the following techniques to recognise and minimise triggers for Luka to avoid a CVI meltdown:
Understanding triggers: Luka enjoys noise - especially music; however once a threshold has been reached he needs quiet time. He can also be overwhelmed by a combination of noise, visual stimulation and unfamiliar environments. CVI Meltdowns have also happened when he was challenged with practicing a new activity or emerging skill for too long. However, as Luka is developing, his tolerance is improving.
Watching for signs: Like many toddlers, what Luka finds funny one day, may be distressing the next. I know to be extra vigilant on the days Luka is teething, tired, or unwell. When Luka is not easily settled, or when I notice he is no longer focussing his gaze, it may be time for a short break or time to move to a quieter environment.
Familiarity: Luka is most confident in environments he knows well. We will often hold therapy sessions or practice new skills in the home or a familiar park.
Practice: When Luka first started swimming and kinder gym, the noise of other kids having fun must have been overwhelming. We did shorter classes and recognised that some days, just being in the water and cuddling was enough. With time and familiarity, Luka went from only participating for the first 5-10 minutes, to enjoying a full 45 minute class.
Preparation: I always bring Luka's bottle and favourite toy when we go out. If possible, we arrive early so Luka has time to explore his environment before it is too noisy, and we choose times of the day that suit Luka - when he is well rested, and preferably not during peak hour.
Finding a safe space or calming activity: Things don't always go to plan - so no matter how well prepared we are, there can be unwelcome surprises. Where possible, I take Luka to a quiet room or outdoors, or failing that I have also cuddled him and had him facing a plain wall of a shopping centre. Luka is very passionate about music, so singing is a very useful and portable technique to help him feel safe again.
So, what did we do after Luka's party misadventure that I described at the start of this article? We were due at a family dinner, so rather than force Luka to socialise when we arrived, I took him upstairs in a quiet, dark room and lay him on the bed, singing quietly. In his own time, he was ready to go back downstairs to greet his cousins. Now, Luka is usually confident in many different environments, and we are tuned into his cues. He is able to enjoy parties, activities, and is even confident to explore new environments on holidays. Understanding triggers has helped us ensure he enjoys learning about and exploring his world and the part he plays in it.
We have recently updated our Resources section, and you can now find Nicola McDowell's speech together with other useful videos here.