Lost in Transition – part 11

The Man Who Came to Dinner

I've just got back from our first family holiday with my boys and my newly (in)significant other ‘Bob’. I wasn’t going to share this because I thought it might be a little close to home but seeing as divorce rates for parents of disabled children is through the roof I thought it might be handy to share.

All a bit of a scary idea really, proper time with my two boys in a confined space without wifi. Suicide in retrospect.

It should also have been apocalyptic weather but the Norfolk gods smiled kindly on us and we had a blissful time. A good thing too because all of them absolutely refused to play Pictionary with me (can't think why!). It’s not as if I went to St. Martins School of Art and worked as an artist for 15 years…. actually it is just like that.

But in short we had three days on the beach making sand sculptures, massive sand castles filled with lego figures and flags and Louis on his skimming board darting along the water's edge. We ended each day by toasting marshmallows while telling ghost stories and finally went seal watching at sunset. The kind of English holiday that memories are made of.

The boys were both seriously needy though...

It was as if they had to be 10cm from me at all  times. They even kept tripping me up walking in front of me. I get it, really. First holiday after the divorce with somebody else in tow. It's all a bit challenging changing the dynamic. After all they've had enough change for a lifetime. But Bob as usual was incredibly kind and patient. He's been here before of course with his two.

He hung back when they wanted me to themselves and answered all of their crazy technical, scientific and historical questions. I may just like Bob a bit more after seeing him with my two. Bob spent every waking minute making sure my boys were the most important people on the planet. He's a charming, kind man.

And now for the introspective bit...

Autism is a different way of seeing the world. It’s another language and Bob doesn’t speak it at all. For me it is weird to realise, but Bob has never met anyone with special needs before. He said something that I’m finding hard to shake,

“I don’t know what Max is thinking”.

Those few words circle like a washing machine. I see dads walk away from their ASD kids all the time. Max isn’t even his.  His own father didn’t stick around so why would anyone stick around if they find stuff tricky and they don’t have any reason to stick around? I’m trying to keep this in proportion. Bob gets on brilliantly with both of my boys. He spent this holiday flying kites, explaining how crystals form and holding my hand when he was sure the boys weren’t watching. He’s a good man. But it’s like throwing an enormous dinner party. Everyone praising the food, crying with the joy of their fully entertained taste buds, naming their first born after the dessert and then a small voice at the end of the table says…”but the starter was a bit salty.” So what do you remember of the evening?…yup, too much salt.

 

If you’re in the same place, you might want to check out these useful links…

 

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

All you need to know about the Blue Badge Scheme

A Blue Badge allows you to park in lots more places and for more time than most drivers. This is because the Blue Badge is there to help people who either have trouble getting about or have medical conditions that make having a car nearby vital.

travel with autistic child

Am I Eligible?

If you have a disability or if your child is disabled or has serious special needs, you may be eligible for a Blue Badge. If you or your child get certain benefits like high rate DLA (disability living allowance) you'll automatically be able to get a Blue Badge.

The Blue Badge can travel with the person it was given to help. So if that’s your child, then the badge can travel with them from babysitter, to parent to family friend. It is a serious infringement to use the card without the disabled child that it was given to in the car, you could get huge fine.

You’re automatically eligible for a Blue Badge if your child:

  • is registered as blind
  • gets the higher rate of the mobility component of Disability Living Allowance (DLA)

It should still apply if your child…

  • has problems walking that are permanent, or that your doctor says are likely to last at least a year
  • can't use their arms
  • Or for a child aged over 2 who has problems walking, or a child under 3 who needs to be close to a vehicle because of a health condition then you'll need to explain that you have to be close to your car to either because of transporting medical equipment or that you need to get home or to a hospital quickly, for example because of unstable epilepsy. You may also be eligible if you carry around bulky equipment because of your child’s condition, you should list it and how often you need to use it. For example, if your child needs ventilators, suction machines, feed pumps or oxygen administration equipment.

 

What if my child doesn't get DLA?

Still apply. You’ll just have to prove that you need a Blue Badge because of your child’s mobility needs.

 

Beware of scammers!

Don't apply for a Blue Badge from anywhere other than your council or GOV.UK. There are some really mean people pretending to be able to process the Blue Badge. They can’t! Report anyone who tries to.

How to apply

You can apply for your Blue Badge online on GOV.UK or you can contact your local council and ask for one. You should hear back from your Local Council within 6 to 8 weeks. If your child is not automatically eligible, you'll need to fill in an extra part of the application form to explain why your child needs a badge.

Disabled Parking Rules

Rules for disabled parking can be tricky. Read our guidance below but if you’re not sure, check ahead of time. Check out the Blue Badge guide to rights and responsibilities.

Where you can park

Yellow lines - Badge holders may park on single or double yellow lines for up to three hours but in general not where there are restrictions on loading or unloading. (You may wish to check whether a particular local authority has chosen to exempt Blue Badge holders from this restriction.) Check the rules for your area. You must display the Blue Badge and the blue parking clock showing the quarter hour period during which you arrived. You CANNOT park on yellow lines in off-street car parks.

‘On-street’ parking meters and pay-and- display machines - Badge holders may park for free and for as long as they need to. You must display the Blue Badge (and the blue parking clock if the bay is time limited).

‘On-street’ disabled parking bays or disabled parking spaces (Signs have a blue wheelchair symbol)  - You may park for free. Unless signs say otherwise, you may park without time limit. You must display the Blue Badge (and the blue parking clock if the bay is time limited).

Where you cannot park and when to check…

  • Airports and airport systems – check with them directly
  • Certain areas of central London and certain town centres in the UK have their own rules. Check first before you set off.
  • Private roads are a no-no as
  • red routes in Greater London
  • Resident’s parking bays
  • Loading bays
  • No stopping clearways
  • Bus stops, bus tram or cycle lanes
  • School ‘keep clear’ areas
  • Suspended meter bays
  • Temporary no parking zones
  • Parking opposite or within 10m of a junction
  • Where a curb has been lowered for wheelchair use

Disabled Parking in London

To find detailed up-to-date advice www.bluebadgelondon.org.uk . This will give you details of where and when you can park. You can get a fantastic map with ALL the blue badge bays that you could ever need!

Parking Guide

You can also use this guide to find out where Blue Badge holders can park.

Using your blue badge abroad

The Blue Badge is recognised in all European countries and allows you to make use of the same parking concessions as the country’s own citizens with disability.

Parking concessions for holders of a disabled parking card differ from country to country, so it’s important to check the rules in the country you’re visiting.

Want to find out more about the Motability scheme? Grants for disabled people? Accessible holidays and lots more? Then click on the Sky Badger website to find help and adventure for your whole family

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

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Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

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Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

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Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Travelling with special needs

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With some kids, travelling can become a real family favourite pastime. Whether they’re obsessed with planes, Thomas the Tank Engine or going on the bus, travelling can often be just as much fun as getting there.

Sometimes medication, equipment, specific food/drink, behavioural or sensory problems can make travelling with a disabled child a bit tricky. Pretty much everything can be sorted out, though, if you plan ahead and talk it through with the right people. Here are a few questions to consider before you go:

  • What plans can you make in advance to help your child cope with change/noise or new sensations?
  • Do you have a plan if you need emergency medical help while you’re out?
  • Do you need pre-existing condition insurance?
  • What letters do you need from your doctor in order to travel? You may need separate verifications for their condition and equipment.

If you’re worried about behavioural problems, or your child is on the autistic spectrum, have a look at this brilliant site: Travelling on the autistic spectrum

Also, DisabledTravelers.com is a resource dedicated to accessible travel information.

Planes

Here are a few tips for travelling on a plane with your child:

  • Before you book, call the airline to discuss your child’s needs. This includes what plans need to be in place if there is an emergency, and any special equipment you need take on board (eg oxygen).
  • Get help at the airport from check-in or airport staff – you’ll probably be fast-tracked depending on your child’s needs.
  • Get written permission for your child to fly from your doctor or consultant, and keep a copy with you at all times. The letter should include permission to take your child’s medication and any equipment on the plane.
  • Bring a repeat prescription, just in case.
  • The loos on the plane are very tight – if this might be an issue for your child, talk him or her through it beforehand, and avoid giving them lots to drink just before take-off.
You’ll find lots more advice here:

Parenting.co.uk Top 10 tips for flying with young children and babies

Disabled-world.com Flying with children

Directgov Air travel if you are mobility impaired

Airport and airline services for disabled travellers

Spinal Injury Network Services for disabled passengers and additional seating fares for travel companions.

The Guides Network Regional and international airport guides for disabilities. They also do camping guides.

Trains

Travelling by train can be a great family adventure, so long as you plan ahead. Have a look at these links so you’ll know what to expect, and read our tips about reducing stress for you all.

Top Tips

  • Check accessibility along the whole journey and include any platform changes. If you need help, let all the stations know in advance.
  • Prepare your child with books and pictures about what to expect.
  • Pack toys, food and drink to use on the journey
  • Find out where the toilets are along the way, and their accessibility.
  • Have an emergency plan with contact numbers – remember your mobile might not work on the underground.
  • See if you can get a train driver or staff member to chat to your child. It can reduce stress for your child and might help avert a meltdown.
  • Avoid rush hour if at all possible.

Eurostar

If you prefer, you can stay in your car on Eurostar the whole way from boarding to when you drive off in France. Just display your Blue Badge and tell staff that this is what you want to do when you check in. Follow the overhead signs for disabled travellers and board at the front of the train. Seeing eye/disabled assistance dogs can travel on Eurostar.

For up-to-date information on special needs travel on Eurostar, check out these pages.

National Rail

Here are a few useful links for when you’re travelling on National Rail.

Basic information for travellers with additional needs

Regional train operating companies with map

For specific journeys you might need to contact individual train companies to check for accessibility to and from the platform. Here is the National Rail link with a handy map.

You can get up to 50% off an anytime ticket depending on your child’s disability and need for a ‘companion’. The criteria are quite specific, so have a look at this link.

Disabled Person's Railcard

Disabled kids aged 5–16 may be eligible for a Disabled Person's Railcard. They pay the normal child's fare, but one adult can travel at a discounted rate of one third off the fare. The medical criteria are quite broad and include epilepsy and mobility Disability Living Allowance. There is some extra information about the railcard on the Directgov site.

 

The Underground

London Underground

Not all stations on the London Underground are accessible to everyone. Have a look at the Transport for London map  – it shows step-free routes and there is also an audio guide.

For kids with sensory issues, the London Underground can get a bit full-on – very hot in the summer, noisy and crowded in rush hour. Occasionally trains will wait in tunnels and although the driver will keep you well informed, this might not stop your child getting distressed.

All London Underground trains have priority seating for disabled passengers and spaces for wheelchairs. However, you may not be able to count on getting these, especially during rush hour.

Most of the Underground has no mobile phone reception, but London Underground staff members will be able to get your child emergency medical help if needed.

The Glasgow Subway

Wheelchairs and large pushchairs are not allowed on the Glasgow Subway. Guide dogs and hearing dogs are welcome, though. Be aware that access to almost all the stations involves steps.

Ticket offices have amplification equipment for customers with hearing problems.

Merseyrail

Merseyrail Trains are well designed for disabled access, with priority seating and with reserved spaces for standard-size wheelchairs and mobility scooters. Contact Customer Relations at least 1 hour in advance if you need help at a station.

As long as they have at least an hour's notice, staff can be on hand to assist at any station. To book, call 0800 0277 347 (free phone number), Monday to Friday. At other times, call 0151 702 2704.

 

Cars

Adapting your vehicle

If your car needs to be adapted to meet your child’s needs, there is support available, including the Motability Scheme. Check to see if you’re eligible.

Before you travel

For long car journeys, it’s best to be prepared in case of medical, emotional or behavioural problems. Being prepared is very empowering. It means you’ll have a lot less things to think about if anything goes wrong while you’re out, and it means you’re more able to cope with any emergencies.

  • Have an A4 sheet of all the information you might need in an emergency, including contact details for medical departments, and a list of your child’s medicines.
  • Have you checked out accessibility at motorway service stations along your route?
  • Is it worth programming the local A&E into your sat-nav to save time in an emergency?
  • Do you need somebody else with you to look after your other children in case of an emergency?
  • Did you pack the CD, DVD, iPad, cuddly toy that your child just can’t live without?

Travelling with an autistic child

If you’re worried about behavioural problems, or your child is on the autistic spectrum, have a look at this brilliant site: Travelling on the autistic spectrum

 

About parking

Hospital parking:

  • Hospitals and clinics often have special parking rules that allow you to park for longer and/or for free if your child has an appointment, is in A&E, or is an in-patient for treatment. You may not always be told about special parking privileges, so make sure you ask.
  • Call ahead if you can, especially if you have a city centre appointment. The hospital might have allocated parking for you. Finding an available space may take a while (at Great Ormond Street, for instance), so leave plenty of time before your appointment for this.

The Blue Badge Scheme

Having a Blue Badge allows you to park in disabled parking spaces, which are always closer to where you need to be. Most parts of the UK are covered in some way by the Blue Badge Scheme. You can apply for a Blue Badge from your Local Council or click here, fill out the form, and Directgov will pass it on for you. The Blue Badge moves with your disabled child, not you or your car.

  • Some cities have their own badge schemes, which make special parking provisions for their own disabled residents.
  • In Northern Ireland, a Blue Badge will give you access to some areas, but you will need a white badge for others. This single scheme applies across the whole of Northern Ireland.
  • Here is some brilliant clear advice about the Blue Badge scheme from Directgov

Taxis

In London and some other large cities, all licensed taxis (black cabs) are accessible to wheelchair users. They have a convenient fold down ramp. Contact the licensing officer at your local council to see if your area has wheelchair accessible taxis too.

Ring and Ride

If you don’t have your own car, try Ring and Ride. It provides a door-to-door minibus service with disabled access for all ages. You can use this service for short, local journeys, to go shopping, to school, college, or hospital appointments. Some also offer fun day-trips.

Registration is free, and then there is a small fee to pay per journey, although if you have a free travel pass from you local authority there is no charge for the service. Sometimes you can have a companion with you or other dependent children.

Ring and Ride is available all year, around 8am–11pm. Sunday service may vary. The kind of service you might have depends on where you live, so contact your local council to find out more.

 

For more information about travelling and parking, check out:

Blue Badge Network

disabled travel advice

Disability Living Allowance

There is a mobility component of Disability Living Allowance, which you can claim if you are the parent of a disabled child who needs additional assistance in getting around.

There are two different rates available:

The lower rate – for children aged five and above who need more help to get around than children of the same age who are not disabled.

The higher rate – for children who are three and above and who have a severe disability. If you are on the higher rate, you qualify for The Motability Scheme, which may be able to help you buy/lease a car. You may also be exempt from Road Tax.

Find out more about DLA here

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See our Holidays & Days Out section to get inspired with ideas for everything from short breaks to dream holidays.

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Look for specialist insurance providers and more info in our directory.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

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Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

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Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Getting Holiday Insurance

insurance

Autism, pre-existing Conditions and Special needs insurance

Most standard holiday company insurance policies will not cover pre-existing medical conditions, but there are specialist insurance companies that will do so. Before you get travel insurance you should get written permission from your doctor to travel. Always disclose any pre-existing medical conditions to your insurance company or you might invalidate your insurance.

The European Health Insurance gives basic reduced or free cover in Europe (replaces the E11) but you should get separate cover too.

Insurance for pre-existing conditions & SENs

Please check with your doctor before getting travel insurance. You might need written permission to make sure your insurance is valid - you won't be covered if you travel against your doctor’s orders.

Make sure you list ALL pre-existing medical conditions, you won't be covered if you don't and you'll invalidate any claim that you then make.

 From the 1st January 2006 you can use the EHIC to cover any necessary medical treatment because of accident or illness. If you are a UK resident, you are entitled to medical treatment that becomes necessary, at reduced cost or sometimes free, when visiting a European Union (EU) country. Only treatment provided under the state scheme is covered. However, to obtain treatment you will need to take a European Health Insurance Card (EHIC) with you. Please see the link below for full details.

For more information visit: EHIC or call 0845 605 0707

You can also compare pre-existing medical condition travel insurance at...

  • MoneySupermarket.com 
MoneySupermarket.com has teamed up with the top specialist travel insurance companies. Using their comparison tool you will be able to compare travel insurance companies that cover medical conditions as part of their policies.
  • Best Medial Cover
 They provide fast online deals and consider all pre existing medical conditions.
  • Travel Insurance GuideThis impartial guide compares all insurance providers in the UK in one place and advice on types of insurance (including policies for travellers with special needs)

The guide producers are working with the Foreign & Commonwealth Office as part of their 'Know Before You Go' Campaign to provide travellers with credible information and help them be better prepared for overseas trips.


The Foreign and Commonwealth Office

 Travel publications The FCO have produced information about travelling disabled and much more.

lovehearts_take-a-break

See our Holidays & Days Out section to get inspired with ideas for everything from short breaks to dream holidays.

HOLIDAYS landing page

Look for specialist insurance providers and more info in our directory.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.