Who is Elisa?

What kind of a person is she? What does she like or hate? Who is she?

Elisa is funny & cheeky little git.

She has a wicked sense of humour. 

Watch her, as she will try to cause havoc. She will try to pull the leads attached to her knowing you will come to tell her off, which she finds hilarious! In similar fashion she will try to flick her implants off her head knowing that you will soon appear to put them back on her.

She loves rough and tumble. She loves making a mess. She loves water: she loves swimming and splashing and playing with water. She loves sensory play and bright lights. She likes exploring with her sense of touch. She finds bubbles fascinating. 

Elisa is happy 5-year-old.

She is a content little girl, who only cries when there is something terribly wrong. Crying is her last resort; if you hear it, you go running to her.

She cries if she is in pain. She cries, if you keep doing something she has tried to say “no” to numerous times and she cannot think any other way to get out.

Usually, you see Elisa smiling and laughing. That is her. A happy little soul. 

Elisa loves Futurama. 

TV has always mesmerised her. She could easily spend the whole day watching cartoons. Though she is picky! She will protest to Peppa Pig or anything too babyish. She used to love Frozen, but that does not take her fancy anymore. 

She likes the films Moana, Coco and Angry Birds. 

But she absolutely loves Futurama. Her favourite characters in it changes periodically. It used to be Dr Zoidberg, now it is Bender. 

She cannot speak, but she won’t stop talking 

Even though there is no language as such that she can use to communicate with, she expresses herself colourfully with facial expressions and body language and audible squeals. 

She will make choices by smiling at the object she prefers and following it with her eyes. If she doesn’t really mind, she will not react either way to the presented choices. 

She says yes with a smile.

She says no with a frown. Sometimes she closes her eyes and pretends to be asleep, which is another way of saying no.

Elisa does not like 

heavy metal and/or rock music. She prefers clear melodic music with simple instruments that is easy to listen to with coclear implants. She loves Frank Sinatra’s voice! 

being left alone. With her medical conditions it is vital she is not left alone anyway, but if she realises she is alone it terrifies her. She is happiest when someone is touching her, when she can sense someone’s attentiveness. 

there are a couple of episodes of Futurama she does hate with passion. She will cry if you make her watch the whole episode of  “Yo Leela Leela” (Season 6, Episode 19) – especially on the bit where the other TV shows are trialled on the orphans.  Her absolute favourites are “Why Must I be a Crustacean in love?” (Season 2, Episode 9) – especially the bit where Dr Zoidberg lifts weights in a gym – and “Clockwork Origin” (Season 6 Episode 9), especially the bit where robo-dinosaurs are fighting and Fry is almost killed. 

She hates being on her tummy. With poor head control, her face is pretty much squashed against the floor if she is put on to her tummy. She hates it. 

She picks favourites.

Mummy used to be her favourite, but for years now she’s been a devoted Daddy’s girl. She picks favourites from all the people who care for her, from school to hospice and respite services. She reacts in bigger measure to people she likes more.

She will give me a nice smile – she will grin like a maniac to her father.

Elisa loves people and attention. 

It is best if she can have as many people admiring her as possible. She’s never been shy, and unlike her mother, she loves being in the centre of the attention. She loves watching people’s reactions to her; she loves big smiles and expressive faces! 

She understands tassels – a tactile body sign language which is used to let her know what happens next. Touch is important to her, not only in comforting way, but as a way of communication too. 

She is interested in others and likes people watching. She gets entertained by watching kids running and jumping.

Traffic has always fascinated her: she is never bored at a bus stop if she is able to watch the cars go by.

She loves being out in fresh air, she adores the sunshine and wind on her face. The best place to be is being cuddled; though do not overheat her, she does not like being hot and sweaty.

Elisa is diagnosed with

  • cerebral palsy, which makes her immobile. She cannot walk or sit unaided. Her cerebral palsy is described as dystonic and dyskinetic, meaning uncontrollable and involuntary movements of her limbs; also, she gets really stiff and suffers from cramps.
  • deafness; she cannot hear a thing without her cochlear implants 
  • cerebral vision impairment: she is registered blind. She can see, but her brain muddles the visual sensory input a bit. Also, she’s short-sighted.
  • epilepsy
  • reflux and unsafe swallow; Elisa is completely tube-fed

But as you now know, she is not her diagnoses. 

Who is she? 

An outdoorsy little geek, who loves being in the spotlight of attention.  A sassy girl, who likes a violent robot Bender and adores Frank Sinatra’s deep voice. She is my precious first-born, who is perfect just as she is. 

PS. You might know her by a different name – read here why she carries a nickname here in the blog!

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What to do when you see someone different

I’m hesitant to let people know about Elisa. More precisely, I waver telling people about her disabilities. I am not ashamed of her. I do not think I could be any more proud of her!

But people get scared. Emotional. The pity slashes through their eyes. They don’t know what to say or do.

I do not want anyone’s pity.

I’m sure Elisa doesn’t want it either. She is just a kid who has come out to have fun with her family. She is excited about the activity we are about to do, just like our diagnose free toddler.

Luckily visually impaired Elisa might not be able to see the looks.
But we, parents and Elisas siblings, surely do.

I am so grateful

for the people who say hi. Like that mum and daughter at our local leisure centre. Me, a carer and Elisa were enjoying a swim in the teaching pool. They came around smiling and said hi, asking for Elisas name. Then with huge grins on their faces they commented how she surely seems to love the water.

Elisa had been laughing loudly as me and the carer took turns helping her to enjoy the pool water. She splashed with her hands, and floated so we only needed to have a hand under her neck for support. The mum and daughter had delighted wide smiles on their faces when they examined Elisa’s joy.

We had a pleasant chat. As usual, I didn’t mind telling about Elisa’s disabilities or especially about her likes and dislikes. Once they left I felt warm inside, and Elisa – as always – had loved the attention.

It was such a different experience

to the incident on a bus some time back. Before Elisa turned 3 and were eligible for a Motability car, we had to travel everywhere by bus. It wasn’t always pleasant.

Once, I was sitting next to Elisas wheelchair on a bus and a man across the disabled spot kept staring at us. It was so intimidating that I kept my eyes on my child, distracting both me and her. Then he asked:

“What’s wrong with her?”

I should have answered with nothing. As there is nothing wrong with her. Instead I answered with a couple of diagnosis and the notion that Elisa was born prematurely. Usually that covers all the coming questions and we could move on from the disability to other things. 

“Well,” he looked straight at me and with some emphasis he said “That’s because you ate too spicy food”. He said it like it was the truth. That that’s why my daughter was born early, that’s why she is disabled now.

Maybe he needed that. Maybe he needed to place the blame somewhere. I surely didn’t need to hear that though. I had blamed myself enough for everything already. 

I didn’t have spicy food when pregnant.

I followed all recommendations religiously. I controlled my gestational diabetes with diet, I ate like clockwork and only what I was allowed.

Still, my placenta malfunctioned and with that, my body nearly killed my baby.

If he had just nodded and left the conversation to the diagnoses, I would have been fine. 
If he had moved on from the medical diagnoses to find out who Elisa is, I would have been delighted. I’m not my blond hair or my weight, nor is Elisa her diagnoses.

He didn’t, he finished the discussion with that accusation and left me feeling crushed. 

When you see someone different, 

please be like the mother and daughter. You do not even need to say anything – a smile brightens everybody’s day.

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