Quinns is full of nonsense. It’s way past his bedtime but he’s making it clear he doesn’t want to sleep. Even although it’s late it’s still really warm so I don’t blame him.

He’s discovered that if he bangs the side of the cot with his foot his toy keyboard plays a tune. Of course, he finds that really funny. Then once I’ve moved the keyboard to stop it he discovers he can make a noise by banging the cot top changer. Cue more giggles!

Nothing I can do about it except wait. Wait for him to get bored and go to sleep and wait for an appointment with the relevant professional to see about a more suitable bed.

I’m not entirely sure what a more suitable bed looks like yet. I assume it’ll be adjustable height so I can use it for changing (which lets me get rid of the cot top changer that’s now too small for him). And I’m hoping it won’t look too much like a hospital bed. I’ve got friends who’ve had problems getting one despite it being totally necessary. So we’ll just need to wait and see what’s suggested.

I also need to wait for Quinns to grow into a sleep system. I’ve already had an appointment with a rep to talk about them. Basically they’re designed to keep him in place while he sleeps. The one I was shown has a sheet with grid lines and then we attach foam supports in the places where Quinns needs them. I must admit it sounds like laundry day just got more complicated! Anyway Quinns was too small last time and his legs ended up being up in the air which is never a great way to sleep.

Physios and OTs always tell me that we need to work in the midline. Basically they’d like Quinns to work sort of curled up in a ball rather than have his limbs extended outwards. At the moment we use wedges to bring his arms inwards while he sleeps but he has a tendency to bring his right leg up and over like a pretzel.  He needs the support system to pin his legs down to keep them straight in the bed.

Anyway I think he may finally be asleep. Now’s the time to creep out of his bedroom for a well earned cup of tea!

It’s been a while since the summer holidays but I’d like to transport you back there to introduce you to another piece of wonderful Firefly equipment, the Upsee.

Imagine not being able to jump over the waves in the sea. No child should have to do without that experience. That’s why when we went on our trip to the beach as well as the Splashy we also took the Upsee. The clever harness allows Quinns to be strapped to me in an upright position and lets him jump waves.

And that is just one experience Quinns can have in the Upsee. With the joint sandals we can walk together, play football together, kick leaves together, play epic games of hide & seek with family and friends…the list is endless. It gives Quinns the sensation of putting one foot in front of the other and seeing things at eye level. Both things we probably all take for granted.

We know that we are really lucky to be in a position to have been able to buy (or be gifted like the Upsee) so many Firefly products but each one costs…well a lot…however being able to walk along with my two children holding hands makes the cost of the Upsee worth every penny!

It’s only once you start thinking about taking a disabled child to the swimming pool that you realise quite how much is involved.

How do we move Quinns around inside the pool building? He’s too big to carry (or at least getting that way). What do we do with the Bug? We need it to transport him around but we don’t want it to get wet. Nor do we want its big dirty outdoor wheels in the nice clean swimming area. We really need somewhere to keep the Bug and an alternative for wheeling him around the pool. Remember he can’t sit up unaided so a standard wheelchair won’t work.

He’s too big for baby change tables (well technically he can still fit but he’s not very happy about it and I worry that if he pushes his feet against the wall hard enough he might catapult himself off head first).  The main thing he needs is an adjustable height bench for changing. One that is big enough for him to lie on and at the right height so that I don’t hurt my back.

We’ve not ventured into the world of hoisting yet but we know it’s just around the corner. Once he’s too big we won’t be able to transfer him from his Bug onto a bench and back so we’ll need a hoist.

Unfortunately a pool having a hoist into the swimming pool itself doesn’t mean that the pool is accessible to everyone.

On a more positive note we recently went to a pool that had everything we needed. A large room with adjustable height bed, hoist, shower, toilet, trolley for transporting to the pool, sensible exit to the poolside and additional help and support from the staff. It made such a difference. If only it was a little bit closer to home!

I mentioned in my last post that Quinns prefers swimming to sitting watching. Quinns loves to swim! For the last year I’ve been in the pool with him two to three times a week. Every time we go people comment on just how excited he is to be swimming.

We started his Water Babies class when he was 8 months old. This was around the time we realised his development was delayed. I knew that swimming had many benefits and he seemed to really enjoy it. He’s still in the same class with some of the same friends.

It’s only really been in the last little while that I’ve noticed a difference between him and his peers. His teacher has been great from the start. She hasn’t singled him out in any way but does adapt it for him where necessary.

The teacher and everyone at Water Babies have been very supportive and encouraging as far as Quinns having swimming lessons is concerned. By far my biggest concern about keeping him swimming is the availability of suitable changing facilities.

The venue where he has his weekly lesson have been very understanding. Earlier this year I realised that the baby change wasn’t going to work for much longer. I suggested an alternative working with what is available (therapy room with adjustable height bed) but also pointed out what would be better (I have to carry Quinns through a public corridor in my swimming costume).

I have had a few members of staff point me in the direction of the disabled toilet. There is absolutely no way I am changing him on a toilet floor!

Anyway they are a small pool but they seem to be taking my concerns seriously so watch this space. I have also approached two other local pools. One promises that it is going to get a Changing Place put in but wouldn’t tell me when and the other hasn’t given it any thought yet.

I will continue to put pressure on all these pools because I just can’t imagine not being able to take Quinns to the swimming pool to do the thing he loves the most. So next time you’re swimming please consider asking what facilities are available for children like Quinns.

One of the most exciting things about going on holiday with Quinns was the treat I’d bought him in preparation.

The Splashy is a bright and colourful bath seat that sits low in the bath to support him and allow him to play and splash in the water. We also have one provided by Social Work; the Deck Chair. It’s a chunky bit of kit that requires a very full bath in order for Quinns to even be in the water. There’s no way it would have been portable enough to take on an aeroplane.

Anyone who knows me knows that I love my Firefly products. I’ve already mentioned my trusty GoTo seat. I’d been after the Splashy for about a year. When I saw it could easily pack in a suitcase I was sold!

Not only is the Splashy for the bath, it’s also for the swimming pool and the beach so the perfect piece of equipment for a sunshine holiday. We found its use was limited at the swimming pool because Quinns made it abundantly clear that he wanted to be swimming in the pool not sitting on the side! But it was useful to have somewhere for him to sit and dry off after being in the pool. Otherwise the Bug would have gotten very wet. Perhaps if there had been a shallower kids pool he might have been happier to sit in it longer.

It really came into it’s own on the beach. Quinns was able to sit low enough in the sand to be able to feel the sand on his hands and feet (he did screw up his face a bit but he didn’t complain). I helped him build a sandcastle before moving him into the sea so he could feel the waves.  He was in a great position to watch Big Sister snorkelling with Dad.

Without the Splashy one of us would have needed to hold Quinns to enable him to play. Lying him flat in the sand wouldn’t really have been an option with the sun blaring down on his face. We have previously dug him a little seat to sit in which sort of works but inevitably he shuffles down, gets very sandy and is limited to making sand angels.

Note: I am not working for Firefly or getting paid by them I just think they’re a really good company making some really useful stuff for kids with disabilities.

After jam sandwiches to keep the kids happy on the flight, we’ve finally arrived for our holiday. We’ve regrouped after our first not so good (although not so bad i.e. I’ve heard worse stories) experience getting on the plane and are ready for round two. However it’s a whole different story. We wait with reassurance from cabin crew until everyone is off the plane. We’re then helped to the front with our luggage allowing me to carry Quinns onto the Ambulift where we’re reunited with the Bug.

Just as we’re wondering whether we’ll need to catch a bus to the terminal the Ambulift starts moving forward. Who knew that not only did they lift you down from the aircraft but also transport you? Not us so that was exciting. We were handed paperwork, more reassurance that they were expecting us.

I don’t know what made us do it. Maybe it was because of our first experience of special assistance where we just felt we were inconveniencing them. Or maybe our fierce independent streaks got the better of us but thankfully the Special Assistant who met us off the Ambulift looked so incredulous at our refusal of help that we eventually accepted.

What a difference! They guided us through the airport, helped get our luggage off the belt, pushed a trolley (much to the relief of Big Sister) and ensured all our luggage was safely on the bus while we sorted the car seat, the Bug and Quinns.

Lesson learned. Always accept the help!

Sadly when the bus dropped us off at the hotel we had to get from the bus to reception by ourselves. (If we’d been sensible we would have sent Dad off to get help but it’s those wretched independent streaks). It was a short but difficult walk with 4 large suitcases, 4 hand luggage bags, a car seat and a Bug between 2 adults and one 7-year-old without trolleys. I’ve no idea how we did it but perhaps our super strength kicked in knowing that the swimming pool was just around the corner.

We’re off on our travels to the sun for a bit of much needed relaxation. So far my story has only got us through the booking process (Planes, trains and automobiles) and the airport (We’re all going on a summer holiday). By the time we’re actually on the plane I’m a little bit stressed to say the least. It’s a bit tight and awkward getting Quinns into the car seat but once that’s done I’m relieved because we’re on our way.

Quinns’ smiles make all the hassle worthwhile. We’ve been reading a book in preparation for our holiday all about going on an aeroplane. It was a super cool, Shine-a-light book called On the plane. Every second page is black and white so when you hold it up to the light the pictures shine through i.e. you could see the suitcases in the scanner or the lifejackets under the seats. He totally knows what’s going on and is very excited about it.

Actually he’s a bit of a daredevil. He loves the swings in the park & from a very young age would go to sleep in his car seat if we swung it with enough force! Needless to say he can hardly contain his excitement on take off. His facial expressions and body language say it all and reminded me of the time above when Big Sister was pushing him really high in a swing. Maybe this holiday is going to be ok after all…

So we’ve got our holiday booked (Planes, trains and automobiles). I’ve packed (almost) all of our belongings and we’re ready to go. It’s an early start. The enormous taxi is booked for 2.30am to carry us and our mountain of suitcases to the airport.

On arrival we make ourselves known to Special Assistance. We’re reassured that they know Quinns’ name and were expecting us.  We get given a VIP lanyard to get us through check-in and security. We manage Quinns in his support buggy (the Bug) and the luggage including the car seat on two trolleys between the three of us (remember Big Sister is only 7 and pushing a full trolley worth of luggage!)

Check-in desk ask us if we need assistance at the gate and we say yes please. They phone to check that that will happen. Now our hold luggage is checked in, we still have 4 hand luggage bags, the car seat and Quinns, of course. That means we still need one trolley but we’re not allowed it beyond security. Somehow we manage to the gate.

Special assistance passengers get called to board first but there’s still no-one to help us. In an attempt to be helpful we suggest Dad goes first with Big Sister to get the car seat installed while I wait behind with Quinns and a couple of bags. We watch while all the other passengers walk past. Parents of small children leave their buggy’s beside us. I get sympathy and reassurance from a member of the cabin crew. She’d help but she needs to stay at the gate till boarding is finished.

Special assistance finally arrive. He takes Quinns in the Bug leaving me with the luggage. I’m not entirely comfortable with him walking off with my 2-year-old but he’s here to help. He explains that they don’t take luggage onto planes nor do they help children on because parents usually prefer to carry their own child.

By now we’re at the door of the plane. I need to lift Quinns, the luggage that was left behind and also collapse the Bug so it could go in the hold. No, it was never going to happen!

I leave my special assistant with the Bug and the luggage and attempt to get onto the now crowded plane. To help you visualise I’m only 5ft tall and Quinns weighs about 13kg and is floppy like a rag doll.

Cabin crew have to radio to the crew at the back to tell Dad he needs to come back to the door to bring the luggage on and collapse the Bug. Fortunately the majority of passengers he had to squeeze past (he’s a bit taller than me at 6ft) were reasonably sympathetic.

So I’m fairly sure we made some mistakes ourselves but it was our first time (where was the information telling us what to expect and not expect – some sort of a leaflet from Special Assistance would have been good). Surely we’re not the first parents of a child with CP that Special Assistance have helped get onto a plane but it certainly felt like it! I’d love to hear other people’s experiences so we can hopefully do it better next time.

Being the parents of two young children is hard work. Having one with additional needs is extra hard work. We decided we needed a holiday to recharge after some busy and stressful times.

To make life as easy as possible we went to the travel agent and asked them to sort us out with a week in the sun. First off there is no way to search the database for hotels that are accessible. Surely that’s a basic searchable? Already we can see scope for improvement or perhaps even a new business. Let me know if such a thing exists.

So we trawl through the possibilities until we find one that might work. The travel agent was great and phoned the hotel to make sure there were no issues with steps. However she discovered that although the hotel was accessible the rooms didn’t have accessible showers. That’s ok though Quinns is small enough that I can still manage (and even prefer) to bath him. For others, that wouldn’t be the case.

Ok that’s the hotel booked. Now flights. Special Assistance will be provided including help through the airport, priority through check-in and security and lift onto the plane.  That all sounds great in theory but more on that later.

Now, how will Quinns sit on the plane? He can’t sit unaided and given half a chance will launch himself off anything (he finds it very funny when he does!) unless strapped in with a five point harness or butterfly strap. We thought he could use his GoTo seat (an awesome portable seat that allows him to sit strapped to any seat, swing, shopping trolley etc). It’s super portable and we’d planned to take it with us anyway. Airline said ‘No, it’s not approved.’

We need either a Crelling harness or a car seat. They can provide the harness for the over 3s. We’re going 3 weeks before Quinns’ third birthday!! We either need to buy one at a cost of around £100 or take our rather clunky car seat. Not ideal when you need lots of luggage to transport equipment and supplies.

It was a difficult decision but thankfully the car seat worked fine in terms of Quinns sitting on the plane and was even useful for the bus ride to the hotel. Fingers crossed the GoTo seat gets approval for airlines soon to avoid such problems for the under (and over) 3’s. And watch this space for next time we travel because they might actually let us use their Crelling harness!

 

I had been thinking about writing about our experiences with Quinns for a while but finally decided to start this blog while we were on holiday. An escape to the sun meant our first experience of airport Special Assistance. We found the help we got at the two airports so very different; at airport one we got a lanyard while at airport two we got a person.

Maybe it was down to our inexperience. Maybe we didn’t know the right questions to ask. What even is Special Assistance? I guess the more you use it the more you learn. If you never have to use it then you don’t know anything. So often when I explain situations to people they say ‘I’d never thought of that.’ That made me think, perhaps if I write about my experiences it will help others understand more and that’s got to help, right?

It’s not my intention to moan about our circumstances here. We know that we are extremely fortunate.  As a family we strive to give everyone what they need but with Quinns that comes with challenges. This blog is a place to share those challenges in making sure that we live our lives to the fullest.