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Amelia

October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we share Amelia’s story, written by mum, Kirsty.

A day in the life of Amelia, is all about compromising with a four-year-old who thinks she is already a fourteen-year-old. She starts her day with lots of huffing, puffing and shouts of ‘no’ about getting up and out of bed, followed closely by strops over which cereal she’s going to pick that day (mainly because mummy doesn’t let her have coco pops every day – mean I know!). Then she generally spends the rest of her day telling us what to do then shouting when we don’t do it right!

Amelia is very independent and enjoys getting her breakfast ready for herself and then going upstairs to get herself washed and dressed for the day. I love watching her independence grow, she always says no to help and will 9 times out of 10 figure out things herself. The flip side to this is that mornings are when we normally start our daily battles; Amelia has recently been diagnosed with Sensory Processing Disorder, with one of her main issues being touch. This means daily teeth and hair brushing struggles.

We are all still learning on this new journey, Amelia now has her own sensory space in the house, we follow a sensory diet – mainly with movement breaks, and we compromise a lot! Teeth brushing has become slightly easier after allowing Amelia to finish brushing her teeth once we have had a go first. Noah, her little brother also plays a huge part in helping Amelia manage her sensory needs. He is the first one over in the morning when the hair brushing saga begins. He puts down whatever toy he is playing with, food he is eating; he turns his back to the tv and will hold her hand, sing to her or act silly. Often Amelia will shout at him, kick or squeeze his hand a little to hard; but he stays until her hair is done and she is happy again! They have the sweetest sibling bond.

Amelia’s just started her reception year at school, which has seen her separated from her little brother, her best friend. If she doesn’t get her hug and kiss goodbye from him, she does not want to go into her class! She is slowly adapting to having full days at school and has started to come out of her shell, instead of sitting on her own at the back of the class she is coming forward and involving herself at the front of the class which is great; as well as making friends with other children during breaktime. She already has her teachers, teaching assistants and the lunchtime staff all wrapped around her little finger!

When Amelia comes home, we make sure we have a sensory or calming activity ready for her (as well as snacks of course). Simple calm activities help Amelia to self-regulate once home as well as allowing Noah to safely engage in an activity with her whilst she is in a heightened arousal state. Without this Amelia will often display challenging behaviour for the rest of the day.

When it’s dinner time Amelia loves to get stuck in with helping. It’s her happy and calm space, it’s where she seems to listen and follow instructions best. You will often find her helping to cook dinner; she loves to make koftas, flat bread, meatballs as well as baking cakes! Her favourite ever meal being a chicken Korma or shredded duck (and of course a McDonald’s Happy Meal).

During dinner time is Amelia’s favourite time of the day though, when daddy comes home. ‘Daddy home’ was the first 2 words Amelia put together. As soon as she hears the door go, her face lights up and she runs as fast as she can for the biggest hug. Amelia then spends the rest of the evening pretending mummy doesn’t exist and following her dad around! She loves to tell him about her day, and recently they have started to read her book that she brings home from school. Amelia, Noah and daddy then have their mad hour of playing to hype them up for bedtime.

And that is our day in the life of Amelia.