Keeping You and Your Little Ones Safe When travelling

Although we’ve travelled on numerous occasions we’ve only had one trip that didn’t result in a wheelchair catastrophe.

And that my friends isn’t great odds.

So what helped us score a completely successful wheelchair damage free trip?  Check out these 7 tips that helped us ensure a safe wheelchair departure and arrival.

1) Take Your Accessories With You

If your child’s wheelchair has any accessories that are removable take them off and board the plane with them.

This means a detachable sunshade, a soft undercarriage storage, a cooling or heating pad, a removable footplate cushion, or a wheelchair rain guard.

Anything that could easily be detachable or come off, take a bag with you and stuff it in there and throw it in carry-on storage.

There is nothing worse than getting to your destination and realizing that some of the pieces of your child’s wheelchair are missing.

And these accessories generally aren’t easy or inexpensive to replace and are generally much needed for your child’s comfort and safety in their wheelchair.

2) Don’t Fold It Down

This tip took me multiple trips to learn.  Even if your child’s wheelchair has the potential to collapse, fold or be broken down into two pieces (the base and the chair)… don’t do it.  I repeat don’t do it.

If you tell the gate attendants that this is as good as it gets and they can’t collapse it in any way – you just increased your wheelchair’s chances of survival by more than 80 percent.

No other luggage will be placed on top of it, they can’t stack or drag it.

While airlines will of course prefer you to fold it or make it compact in any way possible – you are no way obligated to disclose that your child’s wheelchair has that potential or ability.

So leave it just like it is – upright.

3) Discuss Past Damage

Remind the airline and gate attendants that you had past damage experiences and are really hopeful that this time they’ll get it right.

Don’t be shy, casually drop dollar figures like yeah it cost the airlines $8,000 last time to replace the whole thing because you bent the frame.

Make sure they understand the gravity of how precious and how expensive of a piece of equipment your child’s wheelchair really is.

And it’s okay to take slight pleasure in the shock you will see in their faces.

Everyone needs a little reality check now and again about the reality of a special needs family’s circumstances.

Be hopeful, and tell them that you’ve really got your fingers crossed this time that it will remain damage free.

4)  Get a Pre-Board Inspection

Not all airlines do this as standard protocol so make sure if you are flying an airline that doesn’t have a standard inspection of the wheelchair that you ask for one.

This is where the airline attendant will look over the wheelchair and notate any pre-existing damage or problems with the wheelchair so they can document if damage occurred during flight.

Make sure they know the great condition your child’s wheelchair was in prior to trusting them with it.

Generally this results in simple paperwork that you’ll carry with you.

5)  Tag It!
Most airlines are great about tagging wheelchairs at the gate.

They’ll tag it and give you a claim receipt so in case for some reason the wheelchair gets separated from you and/or lost that you have something to try to track it down with.

Some airlines get distracted and will fail to tag it, or in many cases they depend upon you to tag it yourself with tags that simply are available at the counter.

No matter how the airline handles it – just make sure it gets done.

6) Give a Quick 101

Wheelchairs are generally foreign items for airplane and gate staff.  Don’t forget to give them a quick 101 on how your child’s wheelchair works.

Show them the breaks and how to lock and unlock it.

The last thing you want is for them not to know how to drive it or lock the breaks and have it drug up to the gate with a multitude of mishandling damages.

7) Fold it In & Grab Those Tools

If your child’s wheelchair has any swing away laterals or footplates, make sure you fold all features in.

This will help insure that none of those features are bent or are injured during flight.  There is nothing worse than realizing that the airline has bent an accessory that you lack the ability to easily fix.

Likewise make sure you travel with the wheelchair’s Allen Wrench kit so that if you need to make adjustments during travel you can easily do so.

And after you get all those pre-jitter worries set aside about your child’s wheelchair remember to just relax and have a great time getting to and from your destination.

Happy Wheelchair Travels!

Travelling Abroad with Special Needs

As my own family prepares for our summer vacation, we are just as delighted as others to escape for a while, and to have a change of scenery.

We anxiously await precious time away together to relax and to make wonderful memories.  Planning a trip requires strict attention to detail for us.

With two children with special needs, it is not as simple as throwing some clothes in the car and whisking ourselves away.

Meticulous coordination and arrangement goes into even a simple day trip for us. As we are planning a trip overseas, internet searches are imperative for us to figure out…..

How are we gonna do this?

While many parents are searching for “Best places to eat”, we are searching for “Best ways to store pureed meals.”

Instead of looking for “Popular attractions”, we are looking for the answer to “Can I carry CBD oil on an airplane?”

“What items can I take in my carry-on luggage?” is replaced by “Do I need prescriptions for all the seizure and anxiety meds in my bag?”

We’ve appropriately worked out the time difference and the necessary timing of the seizure medication of one child and anxiety meds and CBD oil dosing for the other…..at least we think we have!

Instead of wondering how many sites we’ll be able to see during our visit, we wonder if we’ll be able to cram our daughter’s orthotic equipment into our suitcase.

In place of “How to occupy children on an airplane”, I am driving myself nuts searching “Weight and length capacity of baby changing stations on airplanes.”

In the two years since we’ve flown, our daughter has grown quite a bit and she was nearly too big for the restroom changing station back then.  Sigh….

There is so much to think about when planning to travel as a family. It can become quite overwhelming when your children have special needs.

You want to ensure they are comfortable, safe, healthy and happy.

Luckily, in my frantic searching, I have stumbled across helpful sites designed for parents like us. TSA Cares is a site that offers helpful assistance for disabled passengers. Also, The Center for Children with Special Needs (website not accessible outside US) provides a list of travel resources for families flying with disabled children.

This reinforces the fact that we’re not the only family with these worries and questions. We CAN do this!

As daunting as the task of flying abroad with our children is, it is also a great blessing.

The opportunity for them to see the world is such a privilege and we have incredible people in our lives helping to make it a reality.

They would love to see the world. They want to be out in the world, actively participating, exploring and learning.

Yes, it will take extra careful planning for us to take on this adventure, and some extra deep breaths, but the beauty they will see and lifetime of memories we will create will make it all worthwhile.

It is possible, and I’m thankful the internet has given me some peace of mind as our vacation approaches.

Holiday Hydrotherapy

My youngest, five year old Brielle has cerebral palsy and limited mobility along with other special needs.

She’s just finished a session of hydrotherapy with her school physiotherapist.

When I’ve watched her during these sessions, she seems to just about tolerate it. Not quite upset, but not too happy or excited either.

Her favourite thing is climbing up and down the stairs grasping the shiny handrail that leads into the pool.

She also seems to like riding on the ‘noodle’ like a pony.

I was a little apprehensive about how she’d manage in Splash Landings water park (at Alton Towers), our first point of call.

Her excitement and joy in the water blew me away!

Brielle had an absolute whale of a time! She giggled and squealed with the splashes and sprays of the waterworks, loved twirling and drifting around the lazy river in our arms, more climbing up and down stairs with a firm hand of support, and enjoyed hanging out with the family in the outside warm pool. 

I decided to keep her glasses on during our splash park adventure – they doubled almost as goggles, keeping out big splashes, as they are a sports style and fit closely.

I’d really recommend keeping your kiddo’s glasses on, if they will stay on in the water.

Not only will they minimize water from getting into their eyes, they’ll be able to see your face and their surroundings better!

Two other essentials for Brielle, both at the splash park and our hotel pool is her beady neck support wrap and her wet suit vest.

The neck support’s proper name is a ‘posture pillow’ and I use it to prevent her from swallowing water, as she has big problems swallowing and I don’t want to risk her aspirating pool water. She wears it happily like a pair of armbands.

Her wetsuit is also invaluable at keeping her warm, as we tend to spend long periods in the water, and hotel pools are not nearly as warm as therapy pools!

We usually reach a point during our swim time when Brielle gets bored or teary.

One new tactic I’ve come up with (bar taking the girls all out of the water), is jumping up and down in water holding her! Brielle gets SO excited, she kicks and splashes too.

It’s fun and good movement for her, activating so many muscles, and good exercise for this mum too!

I’m so happy we’ve had lots of time together in the water on our holidays, and am determined to make our trips to the pool more regular when we get home.

I’ve discovered that hydrotherapy is something you can do with your child too, and have lots of fun doing it!

World of Country Life – Visitor Attraction

World of Country Life is a family owned visitor attraction in Exmouth, Devon.

The park first opened in 1978 and since then has grown and developed over the years, winning a number of awards, to be one of the best family days out in Devon!

The attraction has an eclectic mix of museums, animals, play areas and entertainment, both outdoors and under cover, making it an excellent day out for the whole family, whatever the age, whatever the weather!

The park itself is well laid out and easy to navigate with a wheelchair.

Sam adored the park animals, donkeys, deer, goats and llamas being just some of the animals who live at the park.

You can buy food for the animals at reception, just mind your fingers as the goats can be a tad nibbly…!

As we visited in May there were plenty of babies around to see, from chicks and ducklings to lambs and calves.

There are a variety of activities during the day, including bottle feeding the lambs and calves, to duck, ferret and sheep racing.

There’s plenty to do on the park including a soft play area, undercover pirate ship play barn and a café serving a range of food and drinks.

One of the activities we couldn’t take Sam on was the Deer Train; unfortunately this isn’t wheelchair accessible.

However if you have a child who can sit up or sit on a lap then this would likely be suitable for them.

For us the highlight however was a falconry display – the staff running the display ensured that Sam was located right at the front to give him the best possible view.

They provided us with chairs so we could sit with him, and going out of their way to ensure that he could enjoy it as much as anyone.

The bird handler even made a point of getting two of the birds flying in the display to come and settle on a perch no more than a foot away from Sam, so even with his poor vision he could see them.

Seeing the look of amazement on his face as CJ the Harris hawk flew past, just inches from him was worth far more than the price of entry to the Park!

Overall we had a lovely day at the World of Country Life and would definitely recommend a visit if you’re in the area and animals are your thing.

Holiday Parks – Not As Accessible As You’d Think!

We selected the Devon Cliffs site, who offer adapted caravans for wheelchair users.

Sadly when we called none were available however the staff assured us that a Deluxe of Prestige caravan would give us the space we needed with the wheelchair.

Erm… let us just say this wasn’t the case!

We stayed in a Deluxe caravan, with the WAV parked a short distance away in a designated space. So far, so good.

We were aware that there would be a few steps to get into the caravan so although not ideal, this wasn’t a major issue.

However, once in the caravan, it was obvious that space would be a problem.

Sam’s wheelchair was too wide to get it through the corridor and into the bedroom; the twin bedroom where he would be staying was too small to use a mobile hoist.

If nothing else however, life with Sam has taught us to be adaptable… fortunately we had brought his air bed with us, so we adapted the caravan.

You’d be amazed how comfortable those sofas are to sleep on!

The site itself was stunning, very well kept and clean. We couldn’t fault the staff at all, who were wonderful with the little dude.

The children’s activities were varied through the week so we decided to try the messy play session and the family bingo.

Again the staff were lovely, however the volume level was apparently set to STUN, many of the, ‘typical’, children were finding it far too loud and overstimulating and even the parents were starting to cringe slightly.

After painting, we decided to go on a little adventure looking around the park – although a hilly site, it was easy to move around with the wheelchair, with the shops and cafes etc. accessible via ramps or level access.

Big tick there!

Sadly, the swimming pool was not as successful – while the pool itself was easy access with a gently sloping entry to the water, the changing facilities were nothing short of useless.

The disabled change consisted of nothing more than an empty room with a wall mounted chair; no changing bench, loo or shower.

In the end, as we’d promised him we’d take him swimming we battled into one of the normal changing rooms and laid him on the narrow bench to change him… spot on que, the Dude kicked into a full on seizure – his Dad pretty much spread his arms across Sam’s body to stop him falling off the bench while I had my hand between Sam’s head and the wall/bench to save him from cracking his head during the convulsions.

All in all, not a successful attempt.

In fact it was so difficult, that we only attempted swimming once the entire week we were there.

In a nutshell – if you have mobile children then this is a wonderful Park to visit.

Sadly, if like us you have a child with very severe issues, it really isn’t.

Holidays: Delight or Despair?

As the holiday seasons approach so many people start to ask, “You all going anywhere nice? What are your plans?” For many, it’s the perfect time as a family to spend a week or two in a bubble of exuberance and enjoyment with the people you love away from the hustle and bustle of everyday life – away from home!

  • New clothes – check
  • Bags – check
  • Suntan lotion – check
  • Passports – check

This is the idyllic picture that we all hope for and dream that our holiday is like, how I envy those perfect family smiles and perfectly shot pictures in the brochures. 

Unfortunately though, in the special needs world our planning for such events requires a little more military precision. 

Our checklist looks more like this:

New clothes – they feel funny/ I want my old ones/ I don’t want short sleeves
Bags – all 20 of them with every comfort item we own
Suntan lotion –  it’s not burning your skin, forget that (avoids meltdown)
Passports – not needed . . . we’re staying in the UK

I have friends with children who have wheelchairs or feeding apparatus that I can only imagine dread the preparation to get to those few precious days break.

My holiday searches are quiet, secluded locations (we are going on our 3rd log cabin break shortly) – they are lower key than a 3-8 hour flight to a foreign climate.

I search, “What’s nearby?” to plan in advance days out to see if it’s something he might likes the idea of.

I would love for it to be a surprise, but part of his condition is that he needs to know what the routine will be, right down to what food is served in particular establishments to know in advance what would fit in with his limited diet.

Last year we did a sun holiday break in the lovely seaside town of New Quay.

The weather was perfect and we picked out activities that were done at Cameron’s pace. We went with friends and it was a delightful experience.

I am very fortunate in that Cameron now enjoys our cabin breaks and this has become part of his routine; and we were able to tackle the flying side of holidaying with having family in Northern Ireland, so many little 40 minute short flights built up his tolerance.

The things we can’t plan are never far away though; those spanners waiting in the wings ready to throw themselves into the mix, the flight delays or traffic jams.

This is where we reach for technology in the form of tablets or phones and copious amounts of treats to ease the fraught situation.

We are now gearing up and working towards Florida in a couple of years, which I anticipate to be the true test.

So good luck to us all this year in our plans to get some quality time and rest with our families.

Let’s try to delight ourselves in the experience and not despair!

Best Countries for People with Intellectual Disabilities

The tension of feeling a public outcast only adds to the challenges you face as a parent.

You find yourself cycling through an endless argument with yourself and sometimes with your spouse and other family members:

“He’s just going to need to get a thick skin.”

“Maybe she needs to be in a special school where the other kids are more like her, so these things wouldn’t be happening all the time.”

“Surely there’s someplace we could go where people would be more accepting.”

At least when it comes to children with intellectual disabilities, the answer is: there may in fact be someplace where people are more accepting.

The Gallup organization polled people in 112 of the world’s 195 countries about their attitudes to people with intellectual disabilities.

Gallup used the definition of, “intellectual disability”, familiar from the Special Olympics, which now encompass athletes from 150 countries.
That organisation defines an, “intellectual disability”, as a condition which meets three criteria:

  • An IQ below 70 to 75
  • Significant limitations in at least two skill areas
  • Begins before age 18

Most Welcoming Countries for Intellectual Disabilities

Gallup asked citizens, “Is the city or area where you live a good place or not a good place for people with intellectual disabilities?” Based on the Gallup poll, the countries most accepting of people with intellectual disabilities are these:

  • Europe: The Netherlands – 91 percent “good place”
  • Australasia: New Zealand – 90 percent  “good place”
  • The Americas: Canada – 86 percent “good place”
  • Middle East and North Africa: Syria – 79 percent “good place”
  • Sub-Saharan Africa: Mali – 74 percent “good place”
  • Former Soviet Union: Belarus – 56 percent “good place”

The countries where at least 75 percent of adults surveyed thought their country was a, “good place”, for people with intellectual disabilities, according to the poll, were these:

  • Netherlands
  • New Zealand
  • Germany
  • United Kingdom
  • Austria
  • Uruguay
  • Spain
  • Canada
  • Argentina
  • Luxembourg
  • Ireland
  • Denmark
  • Sweden
  • Belgium
  • United States
  • Portugal
  • Malta
  • Slovenia
  • Australia
  • Syria
  • Cyprus
  • Morocco
  • Taiwan
  • France
  • Ecuador
  • Finland

Least Welcoming Countries for Intellectual Disabilities

The countries where fewer than 5 in 10 adults thought their country was a, “good place”, for people with intellectual disabilities included many countries where economies are still developing.

This matches up with Gallup’s finding that income and education influence a person’s sense that the community is a, “good place”, for those with intellectual challenges.

Countries where incomes and educational attainment are almost uniformly low tend to be places where people believe their communities are not good places for people with intellectual disabilities.

Some countries frequently under military threat, including many nations in the Middle East, did not consider themselves good places for those with intellectual disabilities.

This undoubtedly represents families’ urge to protect their challenged children and should be put to their credit.

http://www.gallup.com/poll/148253/europeans-open-intellectual-disabilities.aspx#2

Special Needs Holidays and Travelling: My Top Tips for Holidays and Days Out

1. Stop listening: to people who try to tell you that you can’t go on holiday when you have a child with special needs

What do they know?

Most of them have never had to try.

You know best what is possible for your family.

Take it from me – you can and should have a holiday.

You deserve one.

You just might have to do things a little differently.

There are organizations which specialise in adaptive holidays for families/individuals with disabilities, but they aren’t necessary for everyone, it depends on your child’s specific needs.

2. Throw away the ‘rule book’: and any preconceived notions that you may have

Think about what ‘holiday’ actually means – ‘an extended period of recreation, usually away from home: a break.

In other words, spending time relaxing, doing enjoyable things, and making memories.

Apart from that there are no set elements to what constitutes a ‘holiday’.

Now you’re ready for the next step:

3. Do whatever works for you

My parents once tried to tell us that a three-day city break in London was completely inappropriate for our children; the only suitable holiday for them would be a week at the seaside.

It was Easter – too cold for the English Coast.

Going abroad was out of the question then, as was being away from home for more than a couple days, as our eldest son struggled to cope outside of his familiar surroundings and routine.

So we ignored my parents … and had a fantastic time.

Three-day city breaks became a regular thing for us, always spent in a Premier Inn, because they all look pretty much the same and our son knew what to expect.

4. Play by ‘Australian Rules’

What I mean by this is don’t be too reticent about having to do things a little differently in order to make things work for your family (within reason).

This is where your thick skin will come in handy, as we special needs parents so often have to do things which seem counter intuitive, or just odd, to other people.

This may include, but is not limited to:

– Brazenly taking your own food in an electric coolbox if your child will only eat certain things.

– Rearranging the furniture in hotel rooms if necessary. In family rooms with a truckle bed we used to push the truckle under the dressing table to make a little ‘den’ for our eldest son to sleep in. It made him feel safer.

– Asking for music in restaurants to be turned down. We’ve done this, and when we explained why, one place even pointed out a cool, quiet space we could use as a refuge if need be.

– Taking your own (portable) toilet seat for your child to use.

5. Don’t assume the ‘posher’ places won’t welcome you

Many such places pride themselves on their standards of customer service and will bend over backwards to accommodate their guests’ needs.

In one upmarket hotel not only was Freddie treated like a little prince, but, seeing our special needs buggy, they unhesitatingly offered to change our room immediately if the steps would be a problem for us.

Happy Holidays!

Special Needs Days Out: 10 UK Tourist Attractions with a Changing Places Toilet

Cadbury World, Birmingham

Cadbury World boosts 15 zones, we like the sound of,”Chocolate Adventure”, the best!

The Changing Places toilet is located on the ground floor within the main reception and can be accessed using a radar key.

Heely City Farm, Sheffield

Heely City Farm describes itself as a friendly farm and environmental visitor centre.

The Changing Places toilet at Heely City Farm is in the main block of toilets beside the Children’s Playground.

Chester Zoo, Chester

1.4 million people visit Chester Zoo every year to see their 12,000 animals in 110 acres of zoological gardens.

The Changing Places toilet at Chester Zoo is located in the Jubilee Toilet block next to the Jubilee Monorail station.

The toilet is open at all times throughout the day.

Find out what’s happening this summer at Chester Zoo by visiting the website.

The Eden Project, Cornwall

The Eden Project is an educational charity that connects us to the natural world.

It’s world famous Biomes house the largest captive rainforest, it has an all-year family events programme.

The Eden Project Changing Places toilet is on the ground floor at the public entrance.

Follow the link to visit The Eden Project website and find out what’s on when you visit.

Giant’s Causeway, County Antrim

The Giant’s Causeway is a National Trust World Heritage Site with an award winning visitor centre and packed full of activities for all ages.

The Changing Places toilet is located in the main block of toilets in the Visitor Centre.

It is locked, ask a member of staff for the key.

Find out what’s happening at the Giant’s Causeway this summer by visiting the website.

Camperdown Country Park, Dundee

With 28 types of animals at Camperdown Country Park and lots of great activities for all ages this sounds like a fantastic day out.

Camperdown Park is a public park, its Changing Places toilet is located on the ground floor within its suite of toilets.

Alice Holt Forest, Surrey

Walk, cycle or play in the woods at Alice Holt Forest in Surrey.

It’s Changing Places toilet is located on the ground floor of the new visitor centre and can be accessed via radar key, which is available at reception.

Marwell Wildlife, Hampshire

Marwell Wildlife is 140 acre park with 3 adventure playgrounds, a train and a wide variety of animals.

The Marwell Wildlife Changing Places toilet is in the main block of toilets and can be opened by radar key.

Blackpool Tower, Blackpool

Blackpool Tower is one of the UK’s most well known tourist venues and boosts 5 main attractions.

Including Blackpool Tower Eye, Jungle Jim’s, Blackpool Tower Ballroom, Blackpool Tower Dungeon and Blackpool Tower Circus.

The Blackpool Tower Changing Places toilet is located on the third floor of Blackpool Tower which is the Ballroom level.

It can be accessed by lift and is kept locked.

The radar key is available at the staff entrance or the Ballroom.

You will need to pay an entrance fee to Blackpool Tower to use this Changing Places toilet.

Eureka! The National Children’s Museum, Halifax 

Eureka! is an interactive children’s museum which is fun for the whole family.

It was recently named as the UK’s top Interactive Exhibition for Children by Mumsnet.

The Changing Places toilet at Eureka! is located on the ground floor.

Visit the Eureka! website for more information on opening hours.

Radar Keys

The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country.

Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.

Costs:

VAT Exempt – £4.50

With VAT – £5.40

European delivery – £5.40

Rest of world delivery – £6.50

You can purchase a Radar Key here and find out more about the scheme.