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Life with a disabled child is hard, but Katie and Harvey Price show it’s amazing too

  • Jeffery Williams
  • March 8, 2022
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This is the story of Katie, who has a disabled son Harvey, and her husband Doug. It’s not always easy but they manage to make it work with great humor. This blog shares their journey as well as tips for parents without kids like them selves.

Katie Price and her husband Harvey have been open about their struggles with raising a disabled child. They share their story of how they are able to find joy in life despite the challenges.

Katie Price and her son Harvey

Which side are you on? Katie Price divides the country even more sharply than Brexit (Image: |Instagram)

I, for one, am looking forward to an onslaught of Harvey Price television.

The more the world sees of large, loud Harvey, his passion with trains and frogs, his fear of doors slamming, and his unabashed love for his numerous siblings, the more they will comprehend what life is like for someone with learning impairments.

Elvi, my lovely daughter, is 20 years old but has the mental age of a three-year-old. She went to school with Mr Price, a little boy.

I’ve spent the last 15 years writing or publishing about our crazy, stressful, amazing lives, trying to help others understand Elvi and see her as a human person with rights rather than a victim to be pitied.

But it wasn’t until January 2021, when the documentary Harvey And Me was released, that my email was filled with letters from friends and relatives saying, ‘Oh my gosh, I had no clue.’ I’m really sorry I wasn’t able to help you.’

Elvi, Sam's daughter

Elvi is 20 years old, yet she has a three-year-old learning age. (Photo courtesy of Sam Calilse)

What Harvey Did Next, a follow-up film that depicts our odd hero attending college and meeting new acquaintances, will be released today.

Which side are you on? Katie Price divides the country even more sharply than Brexit. Even if you detest the mother, her raw honesty about Harvey on camera provides a unique and vital glimpse into the challenges and rewards of raising a child with significant problems.

‘I would love for there to be another program about Harvey,’ Katie adds.

‘I believe it is important since many parents are scared to go out because they are humiliated and believe that others will look at them.’ I’m all about becoming lost and embracing it.

Katie and Harvey

I’ve adopted a ‘get lost’ mindset, like Katie (photo: katieprice/Instagram).

‘He’s a credit to me in every way; he’s demanding and hard work, certainly, but also gratifying.’

I don’t think parents should feel ’embarrassed’ about going out. I’m certain that our wonderful children do not conform to societal conventions or etiquette, therefore the general public is unsure how to respond to them.

When you’re older than two, it’s considered impolite to dribble, use diapers, or whine constantly when you’re upset. All of these tasks are done by Elvi.

‘You know those photographs you publish of Elvi on Instagram are great, but some find them frightening,’ a friend recently told me. They make people uncomfortable by interrupting their flow of beauty.’

Knowing this, it’s a lot easier to see your family’s existence whittled down to activities and, if I’m being very honest, locations where your kid will be tolerated.

Elvi and friends

Sam keeps track of their busy, tiring, and amazing lives (Picture: Sam Carlisle)

Elvi enjoyed going to the movies. This small creature would be engrossed in Wall-E or Up, devouring a bucket of popcorn twice her size.

However, as she got older, she began to be bothered by loud sounds. She would move wildly in her wheelchair at the least bang, popcorn flying everywhere.

We were watching Paddington at our neighborhood Odeon when she became startled by an unexpected noise. I had a feeling she’d settle down soon. Two elderly ladies across the aisle’shushed’ us. They tutted, ‘Can’t you keep her quiet?!’

I gave them a scathing look, collected our belongings, and wheeled Elvi out, upset with myself for not shouting at them for being so unreasonable. Since then, we haven’t returned.

That, I believe, is what Katie means by “embarrassed.” It may be tiring attempting to modify or explain our children’s behavior to others when they act in ways that are socially inappropriate.

Our family would no longer be able to dine at a crowded café. Elvi would get irritated by the ruckus and throw all of the dishes and utensils on the floor. I’ve seen her topple tables at restaurants despite being barely 4ft 3in tall.

She brings her iPad with her wherever she goes, playing ‘Happy Birthday’ again and over. We’ve heard it so many times that we’ve learned to ignore it, but other people avoid us when they hear us approaching.

I’ve adopted a ‘get lost’ mindset, similar to Katie’s. However, this isn’t the case for everyone.

Despite the lessening of lockdown measures, nine out of ten impaired children were socially isolated in the first 12 months of the pandemic, according to a recent poll by the Disabled Children’s Partnership, with three quarters (76 percent) experiencing no improvement over the course of 2021.

Elvi

When Elvi and Sam’s kid Sonny were younger (Picture: Sam Carlisle)

Worse, the dearth of knowledge regarding persons with learning difficulties has become life-threatening. During the pandemic, the Care Quality Commission discovered that unwarranted Do Not Resuscitate orders were issued on persons with learning difficulties in hospitals, which might have resulted in preventable deaths.

Despite the knowledge that persons with learning impairments were 30 times more likely to die than their age group peers, the Joint Committee on Vaccinations and Immunisations – a committee of medical experts – opted not to prioritize them for the vaccine in the early days of its introduction.

What message do choices like this send to families like ours?

Elvi and her best friend

Elvi adores Izzy, her closest friend. (Photo courtesy of Sam Carlilse)

Mencap started its Myth Busters campaign last month to improve people’s attitudes of persons with learning difficulties. Harvey, of course, was at the center of it all.

My pals are aware that if they hear the dehumanizing term’retard’ used by friends, they are supposed to speak out.

I used to perform an assembly every year when Elvi’s younger brother Sonny was in primary school, describing her genetic disease and how she was just like them, loving One Direction, wheelchair skating, swimming, and her closest friend Izzy. I told them how her wonderful chuckles would make the whole school laugh.

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I never wanted that generation to be scared of individuals like Elvi or to be ashamed to inquire about her, and I never wanted her brother to be embarrassed by the attention she got in the park.

My kid requested if he might help with the assembly in his last year. His friends and he investigated everything and put it all together. It was my finest moment, except from when Elvi uttered “I love you” for the first time at the age of 12.

Putting your children in the media is a difficult choice. I can’t ask Elvi whether it’s okay for me to write this piece, because young individuals with learning difficulties may lack the mental ability to say, ‘Muuuuum!’ REMOVE THAT POSTING! You’re so humiliating!!’

But, if Harvey and, to a lesser degree, Elvi can demonstrate to the world that they have full, fulfilling lives, I’m with Katie Price. Let’s get started!

Katie Price: What Harvey Did Next will show on One and iPlayer on Monday, March 7th at 9pm.

Do you have a personal story to tell? Send an email to [email protected] to get in contact. 

Leave your thoughts in the comments section below.

MORE: Katie Price refused to talk about her drunk-driving accident in the Harvey documentary, insisting, “I didn’t believe it was essential.”

Future: Katie Price discusses her ambitions to film more TV episodes about her son Harvey, as well as her advice to parents with challenged children: ‘Embrace it by becoming lost.’

‘It’s dreadful for a mother,’ Katie Price’s distraught mother says during emotional confrontation over drink-driving incident.

Related Tags

  • prader-willi syndrome harvey
  • katie price children
  • harvey price age
  • who is katie price
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