Out for a picnic and a trip to the park, we needed some lunch and I knew Ariella would find shopping difficult. I try to only go on nursery days but sometimes life doesn’t quite work out that way, we whipped around picking items off the shelf quickly, no time to browse – not quite as easy now that neither of us can eat gluten. Quickly tossing some strawberries into her hands, “Here Ariella, you hold this and we will take it to the till”. Task initiated.
Then begins the repetitive requests from Ariella…
“Ariella, door, door, till, door, door, DOOR, scream, DOOR, scream, -insert random phrase that she likes to repeat when overwhelmed- “.
My reassurances trying to calm her failing I quickly gave the coveted strawberries to the lady on the till and back again to Ariella. Onto the next stop on the train tracks in her mind.
“Door, eat, Ariella eat, eat, open door, NOOO, Nooo, door, Door, EAT, door, *scream*”
I pay, swiftly roll my double pram out the doors parking up outside and wrestle all the food into the pram. Sebastians sat quietly chewing on his fist, smiling up like business as usual. Yes business as usual, just as I’m about to sigh with relief that the shopping is over with a hunched middle aged man walks slowly out of the shop and says…
“She’s a delight”
But not in a good way, in that sarcastic voice that people reserve to cause offence. I turn around, wondering if I heard correctly? “Pardon?” looking him in the eye. He repeats again “I said, she’s a delight isn’t she!”.
I don’t reply, quite shocked – my first proper complaint against her lack of ability to comply. His wife says “come on, lets go” and off they wonder together, slowly. We head off to the park where Ariella has a fantastic day in the park out in the sun and for the first time she plays away from me with distance while I play with Sebastian sat on a park bench.
I have so much empathy for parents of children who scream, whether that be a rare one off occasional or a daily, hourly, minute by minute event. It’s really frustrating to hear, it’s shocking, it’s abrupt, it sets you on edge.
Never take for granted the freedom of watching what you like on television without your child screaming between each and every transition, being able to drive your car in whatever direction you like to whichever destination you like, spontaneously visiting a shop to buy something, browsing – oh you lucky devils, buying a coffee, stopping to speak to anyone in the street, speaking to your neighbours outside, playing with toys that make sounds, singing to yourself, going to a music festival, waiting for anything at all! I know when you are out and about, going about your day the last thing you want to hear and witness is a child having a meltdown, I say meltdown because I don’t believe the majority of children with additional needs are having constant tantrums. I know certainly there are a lot of sensory concerns playing their part and a absolutely -need- for the child to respond with a scream, sometimes Ariella will try very hard to hold the scream in.
I don’t want to be screamed at all day, I know it doesn’t sound nice but we can’t stop our children from doing it because they either feel they need to or because understanding and developing takes longer and requires more repetition which comes from more exposure and experience than a neuro typical child. As a society we need to learn tolerance and we need to learn to be more patient, with everyone!
I’ve noticed that as Ariella grows older the tolerance from society appears to becoming weaker, when she walks around she often stumbles sideways and will correct herself or she walks into people. I see less smiles now and more frowns, which is such a shame but we do not like being restricted in speed and pace how often do we want to pass or hurry up a learner driving a car? Easily forgetting that we once sat where they do, learning to drive and that everyone must start somewhere. Never forget that you take your own independence and ability for granted, a simple change in circumstances could shift your world.
For the first time this week a member of the public reported our use of a disabled bay – quite wrongly too not that it matters as we do indeed have a blue badge. I had noticed a lady staring over and wondered if she was going to speak up but she decided to take her complaint to the reception of a local gym I was attending. I’m sure if the new changes to the blue badge scheme do come in, then this will happen a lot more for those with hidden disabilities, society assumes disability based on appearances. Yet if you look closely you can see the differences in gait, only because Ariella is a child the lady probably just made assumptions. I kindly told the security staff that the bay was being used correctly, there were no problems. But it left a sour taste that one lady could look and complain based on assumptions, I hope she was told that she had made an error and can learn from her experience.
So what can you do to help?
If you see a child screaming or struggling and you need to interact always consider that the child might have additional needs. If you’d like to help in a positive way remember to:
- Use clear simplified language;
- Explain what you are about to do, using Makaton (sign, symbols and speech) or first, and next structured instructions;
- Give the child extra time to respond to you;
- Appreciate that the child may have sensory processing difficulties and may need to find somewhere to calm down; and
- Remember that even neuro typical children struggle with their emotions and adjust your expectations.
“Do the best you can until you know better. Then when you know better, do better.”― Maya Angelou