10 Tips for Going on Vacation with a Child who has Sensory or Motor Challenges

Have you found yourself asking the question “We want to go on a vacation but we’re not sure how our child will react?”

Going on vacation with children is challenging, but going on vacation with a child who has sensory or motor challenges is especially challenging.  However, I’m sure you would agree that taking a break would be beneficial to everyone.  So, let’s talk about some strategies that could help both you and your child. Choose a setting that the child may find interesting and fun.

Limit the number of hours – If it’s going to be noisy or busy, try to limit the number of hours you’re there and make sure that you have a plan B for some down time to regroup.

Plan ahead – either go through pictures, create a social story or view on a lap top to let the child know where you’re going and what they’ll be seeing.

Call ahead – Ask about special accommodation if you think it will make your life easier. You’d be surprised at what businesses can and will do to help you.

Anticipate where along the way your child may have challenges – Such as, the check-in at the airport, boarding the plane, disembarking the plane, or activities for a long car drive.

Don’t rush – We all lose it when we’re rushing, and your child can sense your angst.

Aside from the fun, think about all the social, emotional and cognitive benefits of a change of environment.

Expose your child to as much of the world as possible – Spending time in a variety of environments creates more opportunities to see, think, feel, move and explore. 

Expose the world to your child – It is so important! Autism awareness, Cerebral Palsy awareness, wheelchair use. Exposing people to children who are neurodiverse or who use adaptive equipment is an important part of inclusion and accessibility.

Enjoy each other – Family time is really important!

Change of Scenery – You’ve worked really hard, and it’s really important for you to have a change of scenery.

Ultimately, on the surface vacation is simply fun. On a deeper level, it allows a family to create new memories, participate in new experiences, and to do it together.  Every minute of every day is a teaching experience. By changing the experience, you’re expanding your child’s scope of the world.  

This experience will look different for each family based on finances, location and the abilities of a child. But, when all is said and done, and A LOT of preplanning, everyone comes out on the other side empowered. 

Your child will be exposed to things that cannot be taught at home or in a classroom, a trip expands your child’s life experiences thereby expanding their horizons, and lastly, make accessibility a current topic for places of business and in the general populace.  Go and see all you possibly can.

Photo by RODNAE Productions from Pexels

How to Have a Memorable Staycation

It happens to me every year. I’m not a huge traveler, but the summer months give me the itch to get away.

This year, the feeling is no different, but the options couldn’t be any more different. In years past, we could search for some good hotel deals or an Airbnb. This year, our concerns for our safety, especially the safety of our medically complex two-year-old, led us to decide that it wasn’t really worth it to take the risk of a getaway.

This year probably won’t be the only time we staycation. Money, time, and health all play big factors in being able to physically get away. Instead of allowing the lost adventure to get us down, we planned a silly staycation this year to give us a bit of a change of pace.

Day 1: Camping

To start, we bought a cheap tent on Amazon and borrowed an air mattress. On the first day of our “getaway,” we set up the tent and filled it with cozy blankets and pillows. We spent the day going for walks and bike rides and playing outdoor games.

For dinner, we made campfire nachos and smores. At bedtime, I set up my phone for a movie, and then it was lights-out.

The best part of this backyard camping trip? Mommy got to go inside to sleep when a certain little one was hogging the bed. 🙂

Day 2: New York City

We woke up in the tent and “headed off” to New York the next day. We set up a little pretend airplane trip, complete with peanuts and pretzels (and, another perk, much shorter than your typical plane ride).

After “landing” and some freetime, we headed to a Broadway show by watching Hamilton on Disney+. (There are lots of other Broadway shows available to stream online if you would like something without the questionable language. :))

Dinner that night was New York-style pizza (my first time trying homemade crust!) and New York cheesecake (store bought).

Tips for a Memorable and Fun Staycation

.  Think about what you love about vacation and try to recreate it at home. For example, if your favorite part of vacation is long, lazy breakfast and coffee out on the balcony, set up a comfy spot in your yard or on your deck to do the same. If you love to hang out by the pool, get your swimsuit, towel, and chair ready…even if it’s inside!

.  Don’t allow your mind to go down the “it’s not going to be the same” road. It doesn’t need to be the same to be a wonderful family memory!

.  If you hate cooking, don’t cook! You can find similar foods that set the mood for takeout, or do some pre-planning and order to have something shipped to your home from a favorite destination restaurant.

.  If you love the unique foods you get while traveling and don’t mind cooking, search for recipes and plan ahead of time so you can get groceries in advance and don’t have to worry about taking trips to the store while you’re staycation-ing.

.  Try your best to unplug and soak in the quality time with your family.

.  At the same time, don’t get too focused on the rules or getting certain things accomplished. As long as everyone is enjoying their time together and having fun, you’re doing a good job!

Our flying experience with a wheelchair

When it comes to going on holiday with children, going on a plane can be a nerve wracking thought.

Will they be ok? Will they disrupt the whole flight? What if they’re sick!?

And about a million other questions.

Now, add on top of that a child that’s a full time wheelchair user and those nerve wracking thoughts intensify. A lot.

So, I’m currently on a plane with my son who is unable to sit or stand without support while I’m writing this and I thought I would share my experience.

To begin with, did you know that airlines allow 2 extra pieces of luggage for a disabled flyer? This made a huge difference as we could easily take his wheelchair and his Firefly GoTo Seat without having to pay any extra in luggage allowance – brilliant!

We made sure we arrived in plenty of time (plus an extra hour on top!) for the flight, there was no way I was prepared to rush about.

We made the airport experience part of our holiday and had food, had a walk about the shops and looked at the big planes.

When it came to checking in we didn’t have to wait in huge lines, we were able to go through special assistance and it was fairly quick and stress-free.

It was time to board our plane and again, we didn’t have to wait in a huge queue, we were able to go to the front and get help from the special assistance team on the lift up to the plane.

One worry we had was having to lift our son up the stairs to the flight but we got a lift right up to the door and was able to wheel him right to his seat on the flight! Once we had got to our seats, I attached our firefly goto seat to the plane seat easily and safely and I could completely relax knowing that he would be comfy for the flight.

I took his ear defenders just in case and although he doesn’t have a dummy during the day anymore, I took that with us too (I figured it might help with the pressure of taking off)

We had lots of snacks and the iPad for the journey and I can honestly say – we had a good flight.

After we landed, his wheelchair was brought right to us and there was no having to lift him anywhere.

Especially when we landed, the airport staff were amazing.

I forgot to add too – we had my sons medications in our hand luggage and because we took a letter to state that it was prescribed to him, there was absolutely no problems with taking it on with us.

Overall, we had a great experience and will definitely be doing it again!

Review: Flying with the GoTo Seat

Review by Sophie Biddlecombe from the 4 Suitcases and a Wheelchair blog

As a family, we travelled to Italy last summer and booked our flights through EasyJet. This was our first flight with our daughter Millie, who has Quadriplegic Cerebral Palsy.

Initially, we thought we would need to take Millie’s big, bulky car seat on board the flight to enable her to travel.

After speaking to EasyJet’s Special Assistance however, we learned that they were happy for the GoTo seat to be used on the aircraft.

Now with the knowledge we could use Millie’s GoTo seat on board our flight, it suddenly made the whole experience feel less daunting and all the more accessible to us.

It certainly put our minds at rest that she would be secured safely and she would be comfortable in her own seat.

We now no longer faced the headache of trying to figure out how her car seat was going to fit.

EasyJet were not only very happy for us to use the GoTo seat, but they were also happy for us to take anything Millie needed to make our journey as comfortable as possible.

The GoTo seat is so light, once we had checked in we could easily rest the seat on the back of Millie’s wheelchair, to transport it to the aircraft.

We used an Ambulift to get us to the aircraft door where we left Millie’s wheelchair behind.

Needing to carry Millie and all our hand luggage, we were also easily able to manage the GoTo seat as, being so light it was easy to pop on to an arm, leaving a hand free for a bag!

Fixing the GoTo seat on Millie’s aircraft seat was so easy, it was really no different to attaching it to any other chair and believe me, we have tried chairs of all shapes and sizes!

The cabin crew were on hand to help us guide the straps through the seat and around the tray table behind.

Millie has low tone in her trunk, so her posture is not completely perfect in her GoTo seat but she loves her seat and was happy being in the familiarity of her own seat, whilst embarking on her brand new air travel adventure!

The GoTo seat enabled Millie to access and have a very normal family experience.

On our two-hour flight, Millie enjoyed peeking out the windows watching the clouds float by, munch away on snacks and watch her favourite television programmes on her tablet, just like her big brother, and any other three-year-old for that matter!

Flying to Italy was our first experience using the GoTo seat on board an aircraft but over the past two years, we have used the GoTo seat in everyday life.

In shopping trollies (if our much loved GoTo Shop trolley is not available), on swings, Go-carts, Little Tikes cars, trikes, and of course chairs of all shapes and sizes.

With the floor sitter attachment, Millie is often found in her GoTo seat in her bedroom playing, at friend’s houses, in the park for picnics, on the beach, on a tractor-trailer ride… you name it she has pretty much been there and done it!

It is also crucial equipment for everyday tasks such as hair drying!

The GoTo seat is so useful and keeps Millie as involved in everything as possible, we wouldn’t want to be without ours and can’t wait to take it on more travelling adventures.

Vacationing With Jaylen

Before my family and I started going on vacations we would always change our minds.

Reason being we weren’t comfortable with people staring not only at my son who’s in a wheelchair but my husband whose an amputee.

I often talk to other families who feel the same way about taking their families out.

So, they just stay home rather than go out and have people stare at them.

Which is something I try to encourage them not to do and I always tell them my experience from our first and second family vacations.

It was about three years ago when we started going places. I’ll never forget our first vacation.

We went to the Great Wolf Lodge in North Carolina.

This place isn’t very accessible but there is plenty to do.

We decided to go here because our kids love water especially my son. And it’s an indoor waterpark. I hate being outside!

While there of course we got the stares on the elevator or in the restaurant. But when we were in the waterpark the attention really wasn’t on us.

So, we really got to enjoy ourselves. The experience was amazing, and we have gone there every year since our first visit.

Our second vacation was at the beach.

The experience was not as good.

Well with us not use to going anywhere we were thinking we could take our son to the beach in his wheelchair. Well we found out that wasn’t going to work.

We ended up carrying him while still in his wheelchair to the water. By the time we got there we were bombed.

You know how the sand can take a toll on you when you’re walking through it.

Well imagine walking through it carrying a sixty-pound boy in his wheelchair.

When we got by the water of course people were staring at us because we just carried a wheelchair with our son in it. But the stares didn’t bother us this time.

I guess because we were tired from carrying the wheelchair. We just focused on enjoying ourselves and not on the people wasting their beach time looking at us.

Luckily, they have those beach wheelchairs that you can now rent when you go to the beach.

And there are a lot of more accessible beaches now.

So, when looking for places to visits don’t think about what others may think, don’t think about how people may look and of course you may run into some problems but most importantly have fun.

Let Them Have a Break

We all need a break from reality every now and again.

As adults, most of us like to take a holiday away from every day life to forget about work, washing and everything else!

We all love some time away to relax and enjoy ourselves, quite rightly too!

It’s so important to look after ourselves and de-stress.

But it’s so important for children too and for children with additional needs it’s absolutely no different.

If you are a parent of a child with a disability then you will know how much is involved with regards to their needs and care.

There are days where you feel like you don’t know how you will fit in all the appointments and therapies but just stop for a minute and picture yourself in their shoes.

If you are feeling overwhelmed then believe me when I say, they will feel the exact same way even if they don’t show it.

Perhaps they just get on with it or maybe it’s a bit of a battle to get them to do all these appointments and therapies but either way, they need a break as much as we do.

So take the time, clear the calendar, book a break away.

As a parent, this might seem like hard work to do but I can guarantee you this is something you will not regret.

Spoil them!

Everything I do, I do it because it will help my child.

He has to do physiotherapy every single day, he has to wear his splints every single day, he has to come to appointments and he has to work hard but it’s all for him, to help him and I know that one day he will understand that everything we had to do was for very good reason, but this week we had a break and went on a little holiday.

I didn’t make him wear his splints all the time, we did absolutely no therapy and there wasn’t a professional in sight telling us what we had to do.

We laughed, we had fun and for one week, we were a “normal family” (if that’s even a thing!)

It may have not been the kind of holiday I had been used to before I had children but seeing my children happy and free from every day life has been the best kind of holiday I’ve had probably ever.

So, next week we will have to go back to the reality of all the hard work involved with my sons disability but some family, therapy-free time this week is something we all needed and I urge each and every one of you to do the same.

Acceptance is the Most Precious Thing in the World

For the first time in many years, we spent Christmas away from home.

As Sam’s hoist, equipment etc is all there, it’s been easier in previous years to just stay put and have family and friends over to visit instead.

So, van packed as if we were going on a month-long road trip (seriously, just how much STUFF does this child need?!), we braved the pre-Christmas traffic.

J likes to remind me of life BC (Before Child), when we travelled around Japan for 3 weeks with just one bag each.

My, how life has changed!

I am blessed not only with an incredible little boy, but also a 10-year-old niece who has a heart of gold and a 4-year-old nephew, who is just the kindest, most gentle little boy.

Isaac hasn’t really met Sam that much before; the last time he was only a baby really.

I had no concerns about these two and Sam, Daisy has seen seizures many times before and knows what to do.

But how would the little one react?

Some of Sam’s seizures are seriously aggressive, and they can be more than a little frightening to witness. I had nothing to worry about.

After being stuck in his chair for hours, Sam was glad to be able to stretch out on the floor – Isaac hopped off his chair and went straight over to say ‘Hi’.

Mum gently explained that Sam can’t talk… then stopped herself as Sam gave Isaac a ‘thumbs up’ sign and smiled at him.

Isaac didn’t need any more encouragement, here was a new play friend and that was all that mattered!

He sat down with Sam and happily played away, before long he passed a book to Daisy so she could read to them both. Holidays can be acutely painful – watching other children run and excitedly play while our little boy can only watch.

That gentle acceptance made more of a difference to Sam and to us than those children probably realised.

They don’t see Sam as different, because their parents have taught them that different doesn’t mean better or worse.

How much better would our world be, if everyone remembered that?

Starting Middle School

Before my daughter started middle school this year, I had been having big time anxiety about it. She had a very rough beginning when she started at her previous school; it seemed not a week went by that we didn’t get a phone call to pick her up or to come and help calm her down due to her behaviors.

It took several months for her to settle in at her old school and I was afraid there would be a repeat situation this year.

Starting a new school is a huge adjustment, and for kids on the autism spectrum like Lilly, big changes or any type of transition can be extremely challenging. A few days before the end of the last school year, we went to visit her new classroom, and it went better than I had expected.

If you have ever seen the sitcom “Cheers,” the reaction of the kids in the class was similar to when Norm would walk into the bar. Excited yells of former classmates and old friends yelling “Lillyyyy!”. Lots of hugs and jumping up and down. Two of the girls took her hands and gave her a tour while I chatted with her teacher.

There are some big changes in middle school, and I had no idea how she would respond to them. There is no playground for recess. As it is a middle school area of a K-8 school, they have a blacktop; a courtyard type area where the kids hang out and eat.

They don’t have an Occupational Therapy room at the new school. This was a big deal since the OT room was her favorite place at school.

She also has to meet weekly academic goals to earn prizes. If she doesn’t, that could be a huge trigger for her. The good thing is that she will be working towards those goals by practicing at home so we will be able to gauge if she will meet the goal or not, and tweak the goals if we need to with her teacher.

Another factor to add into the mix with entering middle school is the onset of puberty, with comes with its own set of challenges.

There have been a few bumps in the road so far; it would be unrealistic to expect otherwise.

We’ve gotten a few phone calls, but three calls over a month and a half compared to three within the first week of school two years ago is a huge success in my book! Overall, it has been a good beginning of the school year.

She loves going to school and loves being with her friends. I am looking forward to watching her navigate this next chapter and watching her grow.

 

Accessible Holidays

This week we are visiting friends in the gloriously beautiful Brecon Beacons; between us we have two disabled adults, four SN children, one (occasionally two) wheelchairs, and are in general quite a tricky bunch to please!

Going anywhere as a group is, however, simple – as long as our destination is wheelchair accessible and has suitable toileting facilities for a wheelchair user with negligible independent mobility….!

One such place is Garwnant Visitor Centre.

Located just north of Merthyr Tydfil, the centre is easy to find and is sited amongst glorious woodland in the Brecon Beacons national park.

On the recommendation of our aforementioned friends, we all met up at the centre on a gloriously hot day; not only is it free to visit – always a bonus during the long summer holidays with kids – it also has more than ample parking (including plenty of disabled parking too!)

The main attraction for most children is the play area, very well equipped with swings (including a bird’s nest swing), rope climbing frame, stepping stones… and a lovely café with easy access for wheelchairs.

Given that the area is not just stunningly beautiful but also very hilly, having such a place fully catering for wheelchair users was brilliant.

Best of all, this attraction boasts a very good size Changing Places loo.

I can’t even begin to say how valuable this resource is for families like ours – Sam is now 7 years old, tall for his age and unable to support his own weight making lifting him both painful and difficult.

Having access to a simple ceiling mounted hoist and an adult-sized changing bench makes his personal care not only easier and safer but far more dignified for the little chap.

For those not interested in the play area, there are a number of beautiful walks through the surrounding woodland, following two trails.

While the first trail was fully wheelchair accessible, the second was slightly less so, one section in particular being steep and gravelly so hard to push the chair up, however the menfolk bravely persisted and conquered.

Along the walks there are wooden sculptures of animals etc to seek out and identify, and the reward for all this walking was the delicious ice cream back at the visitor centre.

Quite apart from the stunning surroundings, ease of access and friendly welcome, having a changing places facility on hand even at a relatively small attraction such as this made all the difference.

Well done Garwnant, and thank you.