Katie Price & Harvey: Advice on helping your disabled child reach independence

There's a moment in the documentary What Harvey Did Next where Katie Price explains the skills she'd love to see her son master in the coming years.

As Katie says, there are parents who would love to see their child grow up to be a doctor or lawyer. For her, it would bring a glow to the heart to see Harvey go to the shops unaccompanied, make his own bed up, or cook a meal.

The documentary shows Harvey Price in his first months at National Star College, based a several hours' journey from his family home. It provides specialist training for disabled students and students with brain injuries, helping them to live more independent lives, part of which is a residency at the college itself.

Harvey will be living away from Katie for the first time in his life. He is autistic, with vision impairing Septo-optic dysplasia and also Prader-Willi syndrome, which affects his learning and behaviour. This makes his leaving home story a little different compared to the majority of teenagers. While many other young people experience what it feels like to move away to college or university, it’s a particular challenge for Harvey as he requires 24-hour care.

'I’m really proud about how he adjusted'

Katie says: “For me, I’m proud of Harvey in so many ways. People have to I got told he wouldn’t walk, talk or do anything really and he does it all. He’s very challenging, as you know – he's on around 25 tablets a day and that’s just to keep him alive, keep him going and for his behaviour. So, for him to go to college without me – because that’s all he knows – I'm really proud about how he has adjusted to me not being there.”

Then there are the life skills that Harvey can hopefully pick up while mum isn't around: “Harvey’s main goal for me is definitely learning all the independent skills and understanding a bit more about danger. For example, when you’re making a cup of tea to know that if you’re going to spill it, it’s hot - it’s just little things like that.”

Forming new friendships

Throughout the documentary, Harvey can be seen interacting with college staff as he goes through his daily routine. Flourishing friendships with fellow students are also a milestone that Katie hoped for.

“When he’s with me,” Katie says, “I’ll take him to the salon when I’m getting a manicure, or I’ll take him to the barbers, even though it’s chaos when I do! I’m taking him away from the area he knows.”

Settling in and making friendships is really important.

Parent's Toolkit spoke to Professor Anthony J. Maher - an expert in Special Educational Needs, Disability and Inclusion at Leeds Beckett University. He says: "Positive social relationships with friends, which are based on shared interests, beliefs, and experiences, are crucial to fostering feelings of belonging to groups and places. Feeling that we belong is a basic human need and therefore important to all children, including disabled children."

Letting go for the first time

Waving goodbye to her son as he takes up a residency at college is perhaps no different for Katie as it is for parents watching their children take the first independent steps to study far from home. It means letting others take over the roles she has fulfilled for almost 20 years, but with the positive outcome of seeing Harvey achieve more under his own steam.

“It does come to a point where sometimes you have to let go and let other people help,” Katie begins. “I used to think, ‘no, no I can do it on my own, I’m doing it on my own’, because you just feel on your own that you can just do it better and quicker because you know the routine.

“You can do it - if I can do it - you all can do it. It gives me anxiety, because I know him best. I think ‘are they going to wash him properly, are they going to give him the right food, are they going to help him lose weight, are they going to do his meds?’. All this goes through your mind.” But Katie explains - realising that she can let go and allow someone else to take responsibility for Harvey became a relief in the end, even though it was hard to take at first.

Professor Maher says: "Parenting a disabled child can feel like a roller coaster of emotions, with highs and lows that are difficult to deal with. It's perfectly understandable that parents may experience feelings of relief and guilt when someone else takes over primary caring responsibility.

"Here, it's important to realise that parents deserve their own time and space too. Use this as an opportunity to engage in self-care and that you're still and will always be, their parent. Take solace in the fact that someone else is using their knowledge, skills, and experience to help your child to learn and develop. We all need to lean on other people. It's important that parents realise that they're not alone and that they should draw on the networks that are in place. , you're doing what's best for your child."

'I can’t wait to see what the next three years will bring'

For Harvey and Katie, this is an ongoing journey.

According to Professor Maher: "All children, especially disabled children, have different needs and capabilities. Rather than considering independence as an end point or final goal that looks the same for all children, think about independence as a continuum. Ideally, parents should try and disabled children to move along that continuum towards greater independence. And parents are well placed to do that because they know their children better than anyone else. They know what their child can and can't do."

"Giving your child responsibilities is important. So, parents should set goals and develop strategies together with their child to help them to become more independent.

- "Try to model life skills, such as showing your child how to wash their own clothes, and provide opportunities for them to do it themselves.

- "Encourage them to become responsible for things - tidying their room, brushing their teeth, getting their own drink, and making their own breakfast are a few examples.

"Again, what a parent does will depend on the capabilities of their child. Just try and make sure that the tasks are challenging but achievable. And don’t be afraid to experiment and even fail, but do ensure that you learn from the experience".

From a boy whose family was told he may never walk or talk, Harvey has already defied expectations with his progress. Now he's in a regular learning environment, hopefully for another three years, Katie looks forward to how his potential could be realised even further.

She says: “I can’t wait to see what the next three years of him - hopefully being at the college - will bring and what they will offer. I sit there now and think ‘oh my god, how else can he surprise me?’ because he surprises me every year."

Katie continues: “Six years ago, he didn’t really talk and now he talks all the time. Ten years ago he was in a wheelchair, he wouldn’t even walk, didn’t even talk, didn't draw how he draws, and now look at him!

“He's like his own little man. I’m not allowed to call him a boy, he’s like ‘no, I’m a man!’.”

Katie Price: What Harvey Did Next is available on BBC iPlayer.

Advice for parents from Professor Anthony J. Maher - Director of Research and Professor of Special Educational Needs, Disability and Inclusion at the Carnegie School of Education, Leeds Beckett University.

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Where to look for help and information.

The following national and regional charities and organisations can offer further advice and assistance on careers, education and independent living:

Preparing for Adulthood partners with local and national groups to young people with SEND into paid employment and independent living

Mencap is a charity that aims to and improve the lives of people with learning disabilities by working with them and their families. Working with local groups across England, NI and Wales. They have information to help people into employment and training here.They also have advice on transitioning onto adult services and further education here.

The charity Scope offers practical information and emotional including online groups and telephone helplines.

In Scotland:

Scotland offers for families with disabled children. With parent groups, free workshops for parents, and within hospitals.

IntoWork is for disabled people and people with long term health conditions in Edinburgh and Midlothian. They provide personalised advice and for jobseekers and employees.

In Wales:

Remploy Cymruing disabled people into employment by providing programmes and services that help develop skills and employability.

Disability Advice Project have this finding work page.DAP provide specialist advice for disabled people, their families and carers.

In Northern Ireland:

Indirect (moving into adulthood) offers advice about the changes that teenagers with disabilities may face.

ed Employment Solutions (SES) is a partnership across Northern Ireland ing people with disabilities and health conditions into employment.

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