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Me, My Life, My Family

Home Me, My Life, My Family

This is all about the things that I like doing, my dreams, wishes, and getting on with people at home.

Growing up with a rare condition may make doing some things in life a little harder, but this shouldn’t stop you from trying to have the best life possible. Learning to understand yourself, knowing what you’re good at and having dreams are all important to help you to enjoy your life. Your family are there to help and support you, they want the best for you too!

The knowledge and skills you may develop are:

Getting to know myself
Being able to talk about myself confidently
Thinking about my future
Developing independence and responsibility
Managing trips, locally, overnight, or away from home
Managing my home life
Getting on with family members

Think about

What you are good at…
What you like doing…
Things you like doing with your family…
Your hopes and dreams…

Resources for young people

If it is possible, you may want to learn to drive, travel the world or spend more time with your family. Young people from ASUK and other services have gathered lots of resources to support you in your life.

Emma is a young person aged 17 with a rare genetic condition – she doesn’t let this hold her back

Hertfordshire deafblind girl who mastered braille at six reveals she can ‘do more than people think’ – HertsLive (hertfordshiremercury.co.uk)

Dreams

Your dreams and aspirations are important to you. Don’t be put off if it seems some things in life are hard to achieve. Kion is a young man with Alstrom Syndrome, despite his visual and hearing impairment he now lives independently. Top Tips from ASUK Culture Family Forum Members Your dreams are important… living independently.odt (sharepoint.com) is an account of how he lives independently and top tips for how he manages.

Alex always wanted to ride a horse, even though she has Alstrom Syndrome she has not let this get in her way. She was a guest speaker with the ASUK Culture Family members where she talks about how she got into horse riding and dressage. Click HERE Top Tips from the ASUK Culture Family Forum Members Horse riding and dressage.odt (sharepoint.com)for a link to her talk and top tips.

Travel

Travelling can be a great way to learn more about other countries, get to know people from other cultures and help you to decide what you want in your life. Travelling is a growing and learning experience, which may develop your independence and responsibility.

Travelling can be tricky; if you are taking a flight, airports can be overwhelming, from catching planes on time, to going through security- it can be a stressful experience!

Some young people have disabilities, medical conditions or chronic illnesses which are not immediately obvious to others. For some people, this can make it hard to understand and believe that someone, with a “non-visible” condition genuinely needs support. Some people question whether you have a disability because you don’t look ‘like you have a disability”.

That is why the Hidden Disabilities Sunflower is used – to encourage inclusivity, acceptance and understanding. What is the Hidden Disabilities Sunflower? (hdsunflower.com)

It is a simple tool for you to outwardly share that you have a hidden disability. Simply by wearing the sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.

Young people from the ASUK Culture Family Forum have shared some of their top travel tips HERE Top Tips from the ASUK Culture Family Forum Top Tips for travel including the Hidden Disabilites Sunflower information.odt (sharepoint.com)

Taking medication on holiday abroad

If you want to take your medication abroad with you, you will need to check the rules about taking your medication out of the UK and into the country you’re going to (always check your holiday medication with your healthcare team).

Can I take my medicine abroad? – NHS (www.nhs.uk)

Air travel information for disabled people

Some young people may need additional support to prepare for a trip on the plane. The charity Scope have collated some useful information:

Air travel for disabled people | Disability charity Scope UK

Accessible holiday providers

Some companies provide carers on every trip, wheelchair accessible coaches, and accessible accommodation.

Limitless Travel – Disabled friendly and accessible holidays

https://discover.limitlesstravel.org/uk/disabled-friendly-holidays/?utm_source=Google&utm_medium=search&utm_campaign=11908851978&utm_keyword=disabled%20travel%20agents&gclid=EAIaIQobChMI0t_snoLBgAMVSwkGAB36aAxwEAAYASAAEgLf3_D_BwE&gad=1

SEABLE specializes in disabled holidays, accessible holidays and holidays for the blind and visually impaired.

https://seable.co.uk/#:~:text=Seable%20specialises%20in%20disabled%20holidays,for%20blind%20and%20visually%20impaired.

Driving

Not everyone is able to learn to drive a motorbike or a car. Even if you have a visual impairment or learning disability this should not stop you from wanting to try out driving a car or even a fire engine!

Organisations like Young Drivers provide inclusive driving experiences. www.youngdriver.eu/whyus/inclusive

It’s important to know the full facts if you want to learn to drive with a disability. Driving with a disability: everything you need to know | RAC Drive

When you book your driving test you should let the examiner know if you have a:

health condition
disability
learning difficulty

You’ll still have to drive to the same standards to pass, but the examiner can make adjustments for your situation:

Driving test: cars: If you have a disability, health condition or learning difficulty – GOV.UK (www.gov.uk)

Driving with medical conditions, Blue Badges and public transport for disabled people – GOV.UK (www.gov.uk)

Depending on your health condition your Healthcare Team or services you are connected to may provide specific driving advice for you like. One good example is the information Diabetes UK provide:

https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/driving?gad=1&gclid=EAIaIQobChMIieXS5vOhgAMV5ktBAh1pDwTjEAAYAyAAEgIjwvD_BwE

Getting to know me

A hospital passport is a resource for everyone with a learning disability to tell healthcare professionals and community services about themselves and their health needs.

The passport helps the hospital team to know how to make you feel comfortable.

Some Top Tips:

You can carry your hospital passport and show it to healthcare staff at the hospital.
It can help you to get the care you need in an easier to understand way.
Hospital passports can get lost in hospital so it’s a good idea to have more than one copy.
If you don’t have a hospital passport, ask your Healthcare Team to explain more about them and provide you with one.

(Sources mencap.org.uk)

Example of a hospital passport Hospital Passport (This is me: My Care Passport) | Royal Surrey NHS Foundation Trust

Going to stay in hospital can be a worrying time for anyone, speak with your healthcare team about your worries. Follow the link below if you are a young person with a learning disability, as there is extra support you can get while you are there:

Learning disabilities – Support if you are going into hospital – NHS (www.nhs.uk)

Resources for parent/carers and professionals

Please click on following links to learn more

Me, My Life, My Family

This is all about the things that I like doing, my dreams, wishes, and getting on with people at home.

Resources for young people

Dreams

Travel

Taking medication on holiday abroad

Air travel information for disabled people

Accessible holiday providers

Driving

Getting to know me

Resources for parent/carers and professionals

Aerobility offers disabled people the opportunity to fly a plane.

Driving activities for differently abled people of all ages:

Accessibility information about venues

Gift experiences for disabled and visually impaired people

Disabled Access information by disabled people for disabled people

Days out for disabled people and their families

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