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.

Three Reasons Holidays Are Difficult For Special Needs Families

Big decisions may be about whether to fly or go by car, whether to buy new clothes or dig out last summer’s and hope they still fit, or whether the site has WiFi or not.

Holiday decisions for me and many others are quite different.

We have to think about access, proximity to hospitals, space for equipment, noise levels and flashing lights, changing facilities for older children and travel difficulties. 

These are just a few of the things that can make holidays difficult for special needs families. 

That is if you even get past these big three:

1. Cost

While cost is often a factor for many families it becomes more so for those affected by disability.

Many families affected by disability are forced to live off benefits and many parents are unable to work due to their caring role.

Combined with the huge jump in price for holidays during school holidays this can prohibit many special needs families even being able to think about a holiday.

Caravans suitable for wheelchairs cost much more to hire than standard ones. Hotel rooms with disabled access also seem to cost more.

The irony is that being disabled requires more money yet the income is often much less. It leaves so many families with no choice but to stay at home all summer.

2. Access

Muddy camps sites are of no use to anyone trying to push a heavy child or adult in a wheelchair.

Some caravan sites do not allow cars to park right next to a caravan, making access to the van very difficult for those with limited mobility.

Getting on and off flights takes lots of planning and so many places still do not have suitable changing facilities for the disabled.

Beach access is still a major issue as are many older high streets in seaside towns.

Theme parks may offer fast pass entry for the disabled but for safety reasons, some rides are not at all suitable for certain special needs children or adults.

Sadly many service stations on motorways still do not have good access for the disabled or changing places toilets. Simple things we all take for granted that can be a huge hindrance to a family affected by disability thinking of going on holiday.

3. Respite

Holidays are supposed to be a time of relaxation and unwinding.

For families with disabled children this will never happen – on holiday parents are still full time carers. Disabled children can rarely be left at a children’s club on a holiday camp or left to play on a beach while mum sunbathes.

Dad cannot read a book while his little one plays in the park. People often forget that the care needs continue every single day on holiday and often more so than usual as unfamiliar settings and change can cause some conditions to worsen.

For families affected by autism the very thought of taking a child somewhere new can increase anxiety and make meltdowns worse.

Not having home comforts and being in the public eye can put so many families off leaving home.

Caring is a full time commitment. Having a special needs child can make summer very long and difficult for families. Sometimes health can change so quickly that the risk of leaving home can be frightening. 

While you plan your holiday this year spare a thought for the thousands of families with special needs children who for a number of reasons will be staying at home again this year.

Maybe one day they can look forward to a suitable holiday too.

“Space to Change” for Cornwall Services

Cornwall Services on the busy A30 trunk road near Bodmin has opened a Space to Change assisted wheelchair-accessible toilet, in the main building.

The new facility demonstrates exceptional customer care.

It opened just THREE months after first being requested by visitor and special needs parent Rachel George.

The installation was carried out by the expert team at Clos-o-Mat.

Explains Cornwall Services manager Alex Lawson, “Rachel and her family stopped to use our facilities on a trip to Cornwall. The needs of their child mean they need a large changing bench and hoist – kit not normally found in a conventional wheelchair-accessible toilet. So while they were here, she approached me and asked if we could see a way to offer those facilities.

‘Conventionally that would have meant a Changing Places toilet, which would require finding a room 12m2 to comply. We were struggling to do that when we heard about Space to Change, which has the same key equipment, but in a smaller space – 7.5m2 .

We had an existing toilet which could be remodelled to accommodate that, and Rachel was happy with the compromise, so that is what we have installed. It was the perfect solution!”

Added Rachel, ‘When I spoke to Alex, he ‘got’ what I was asking for straight away!

It will make such a difference to the tens of thousands of families like ours with someone who needs changing.

Without a bench and hoist, we face our loved one having to remain in a soiled nappy, or lie on a public toilet floor to be changed.’

Firefly Community’s Claire Smyth commented, ‘Not only are we excited that this is the first Space to Change installation in a service station, it is absolutely amazing that within 3 months this Space to Change facility has opened.

I hope that this acts as a real encouragement to other campaigners who are perhaps feeling a little fatigued or want-to-be campaigners who are a bit daunted by what it means to campaign for better facilities.’

A member of staff will provide access to the Space to Change toilet for visitors needing to use it. All staff have been fully trained in the concept and equipment, to help users as required.

If you are a venue interested in installing a Space to Change accessible toilet in the UK, get in touch with Clos-0-mat!

If you are interested in becoming a Campaigner, get in touch!

What Are The Odds?

I often think back to my pregnancy with Cameron, sometimes with critical thoughts of how those nine months were and did I do anything wrong to make my baby how he is today.

We are our own worst enemies and although professionals can tell you:

“It wasn’t anything you did!”

“There are genetic elements at play!”

“You can’t change what is!”

…It doesn’t make the thoughts of, “What if..?” or the pain go away.

It is four years since our diagnosis and as a whole we are in such a better place as a family unit.

Cameron is doing well at school and surprising us at every turn; work is great; we have bought our first home and we are even picking out a new car… But there’s something missing.

My thoughts have moved on now from the guilt of my first pregnancy to the thoughts of, “Should I put the family through another?”

It’s a thought that I have postponed over the years for one reason or another.

My biological clock is now ticking so to speak; society tells me that past thirty I am a mature mother and my eggs are depreciating.

I would like to have another child so that Cameron has a sibling; as the eldest of five siblings myself. More selfishly though to satisfy my maternal urges.

There is however a strong force at play; holding me back, my very own ball and chain.

You see in addition to autism my son has a genetic condition with his eyes, Macular Dystrophy with signs of Retinitis Pigmentosa (RP).

My brothers each have these conditions to a degree; one is just manifested in severe short sightedness but the other is in a degenerative form that by Cameron’s age meant he was already blind in one eye.

Cameron is lucky that his so far do not show signs of any degeneration or that the RP elements are microscopic.

We are waiting for genetic counselling to see if this is an X linked condition, as this means there is yet potentially another thing for me to consider should I choose to have another child.

I have written in a previous blog that if you have a child with autism then there is a 1 in 20 or approx 5% chance that your second child with be on the spectrum.

The eye condition if confirmed to be an X linked recessive condition; for me means that each pregnancy also has a 1 in 4 risk of having another affected son.

So when I am asked, “Are you, or, when are you having another?” My mind just freezes, my palms go sweaty, my heart aches. 

The answer is just not that simple and I lie… a lot! I play it down that I actually don’t want another child.

If you ask my husband he would tell you that I would have another child now, this very second and he is not wrong.

Surely then this should be my instinctive and instant response then – yes/now!!

The reality though is the longer I think; the longer I have the chance to list the things to talk myself out of it, to reel off the excuses as to why this is a bad idea.

– Would Cameron cope with such a big change to his routine?

– Would I cope becoming a mother with an almost 10 year age gap in children?

– The house isn’t big enough, we would need to move!

– Childcare!

– What if it’s another boy?

– Will the baby be OK?

– Could I mentally cope with another potential disability?

In short no; I know I wouldn’t cope, I know that I don’t have the extra energy to do what I do – doubled.

I selfishly don’t want the heartache of another set of diagnosis days, internet researches, swatting up on medical jargon.

Dare I say without being frowned upon by society that my heart wants a typical child?

I take to the internet and I search for percentage rates of genetic conditions being passed onto my offspring.

I’m not much of a gambling person, and yet here I am trying to make a decision to gamble with potentially another of my most prized possessions.

So…… what are the odds?

Do I consider the odds to be against me at a 1: 4 or for me with a 3:4.

Painfully – no one knows!

Thank-You For Your Insight Into My Child’s Feeding Issues

These statements are all unwarranted bits of advice that we have been given, having a child with feeding issues.

When your child can eat by mouth, but physically can NOT tolerate textures in food or lumps of any size, feeding becomes a slippery slope. 

In disagreement of these words of advice we’ve been given too often:

She would NOT just magically eat a cracker or a chip if we were to simply let her get seriously hungry.

She is NOT lazy.  She is the hardest working person I have ever witnessed.

She is NOT picky; I’m sure she would gladly devour a slice of pizza if she could.

Baby food does not contain the fat and caloric amounts that she needs to maintain her body weight, and for growth.

If there is ONE lump in her food, it will NOT be OK. She will detect it and she will gag until she makes herself sick. Then, a feeding aversion will follow.

Thanks for these tips that have worked for your typical child, but no thanks.

My daughter LOVES to eat. She is five years old and has multiple cognitive and physical disabilities that make chewing an impossible feat.

Therefore, we have big issues with feeding.

She enjoys casseroles, spaghetti, asparagus, roast beef and potatoes, and much more… as long as her meals are smoothly pureed so that she can tolerate them.

I have often said that our Ninja blending system is our saving grace. It’s amazing what you can puree with the right blending system and the right amount of liquid!

I honestly do not know what we would do without it, as her ability to eat depends on it.

We’ve learned the tricks of the trade (adding heavy cream, milk and water to her meals) for achieving the perfect consistency.

While chewing is a goal we continuously work towards, we are grateful that we are able to feed her in this manner.

Our pantry is also well stocked with high calorie pudding, yogurt and applesauce that are easy for her to manage.

Travel is always tricky and dining out requires very careful planning, but we manage to make it work.

Feeding issues can be absolutely stressful, and it’s hard for parents who haven’t walked this path to fully understand.

No matter which method Special Needs parents employ to feed our children….whether it be a feeding tube, bottle feeding or pureeing everything, we are all doing what is best for our children and providing them with the necessary nourishment they need to survive and thrive.

Instead of giving us tips that are not constructive or productive, just offer an encouraging word.

We truly appreciate kindness and understanding.

Those are things we will thank you for.

My Delight At Finding Out My Seven Year Old Is Just 18 Months Old

Last month was one of those times. ..

I was sitting alone at yet another meeting listening to more information on my son.

This time it was results of recent developmental and communication assessments.

Some results were hard to hear, like the fact my seven and a half year old had the expressive language of a six month old baby.

That HAS to affect you.

It means that for seven years, or 72 months, or 364 weeks, however you choose to look at it, his communication has not changed.

Let me illustrate that for you in two pictures: 

His body has grown, his physical skills matured, his appetite increased, his weight quadrupled yet his ability to express himself verbally stood still.

That really brings it home.

So it was in this setting, and having just taken in this news, that I found myself grinning from ear to ear when they went on to say his overall development, his ability to understand language, his functional everyday skills and physical skills were all MUCH higher, an entire year higher than his expressive language. 

I was indeed delighted to hear my seven year old is actually functioning at 18 months.

Yes I know that means he is still six years below his peers. I am not in denial at the extent of his complex needs.

I am in no way underestimating the difficulties he faces, but I am rejoicing in how far he has come. 

He may be much much slower than everyone else but we are moving in the right direction and this is progress.

Have you any idea how amazing toddlers are?

A quick google at developmental milestones the average 18 month old has achieved and you may be amazed what the humble toddler can indeed do.

Here are a few of the amazing things my son can do now at seven and a half or 18 months: 

– he can point.

– he can help dress himself by putting his hands up when you take a top off him.

– he pretends to give a teddy something to eat

– he takes me by the hand to what he wants

– he can use a spoon by himself

– he can drink out of a cup

– he can walk on his own

– he can point to his head when I sing ‘head, shoulders, knees and toes’

– he now understands key phrases like ‘bath time’, ‘bed time’ and ‘dinner’s ready’

– he can find a seat and sit down

– he now knows if I hide a toy under something it is still there even if he can not see it.

– he knows shoes go on his feet, hats go on his head and pyjamas are for bedtime.

These are amazing! 

Had he reached any of these fabulous milestones at 18 months I may have just taken them for granted.

But reaching them six years later is even more cause to celebrate. 

For a child with complex needs to be able to do these things is truly wonderful. 

They thought I should be sad to hear my boy is still a toddler when in fact he is almost as tall as me. I don’t think they expected me to be so happy that day.

It really is strange how things change when you have a child with complex needs.

I will have plenty other times of sadness but today we have something to be happy about. I have an 18 month old seven year old and I am delighted! 

The Magical Powers Of An Orange Wheelchair

There is something with magical powers in our family; my son and his bright orange wheelchair.

The attention that Hadley has received since we purchased a Veldink for Kids (Kiddo Tilt) is incredible.

Everywhere we go, people are in awe of it.

They ask questions about it.

It turns heads. It educates people that not all wheelchairs are the same and it makes our lives easier.

People seem excited by it and they are not scared to ask things that they possibly wouldn’t approach if Hadley was in a pushchair.

People love to comment on the colour (it was custom-made for orange and train obsessed Hadley) and often ask where it’s from and how it helps.

There was a time that this attention would upset Hadley beyond measure.

That it would cause him to vomit with anxiety. But now, he laps it up. It makes him feel important.

And I hope it helps to make the world just that little bit more accepting of those of us who come with a couple of extra wheels, in whatever shape or form.

His friends and sister love it too. They love having a go, whizzing themselves around the school playground.

It’s like the amazing bike that the cool kid got for Christmas that everyone wants to have a ride on.

It’s powers are endless. It’s so bright and attention grabbing that it shouts, “Hey, look at me, I’m so cool!”.

But it also has the wonderfully ironic ability to help Hadley blend in. Giving him the power to be the same as his friends.

It’s not that I want my son to necessarily blend in, to the contrary in most situations.

But for a five year old with Cerebral Palsy, amongst 30 kids without Cerebral Palsy, I completely understand that he would want to feel the same as everyone else in his class.

It’s as if the wheelchair chooses to make his differences really exciting and cool or to make them vanish, depending on the situation.

It just seems to know what Hadley needs at any given time.

When we visit places, we seem to get preferential treatment, compared to when he had an NHS chair. It’s like taking a (minor) celebrity out with you.

We seem to be the talk of each shop, restaurant or hospital visit. People move out of the way of it, like it’s some sort of royalty.

In the NHS chair I have been known to have to push Hadley in the road, as rather rude members of the public hogged the footpaths and refused to give way to us.

And this is before I even talk about what it does for him physically. It’s a wonderful piece of kit, that supports him where he needs it and is designed to allow him to self propel with ease.

Something he was unable to do at all in his NHS chair. It is protecting him, like a shield. Ensuring his little body doesn’t endure too much stress and therefore avoiding injury.

I am so glad that we discovered this brilliant piece of equipment. We fundraised and saved to be able to provide it for him. And we honestly couldn’t get through every day life without it now.

It’s opened up opportunities for so much more than just getting around.

He can play sport in it. He can go off roading through forest in it. He can even do wheelies in it! And he can relax in it.

Knowing that for now, this hunk of metal is taking the strain, and helping life become that little bit more manageable. I’m not sure he will ever forget it. We certainly won’t.

If you would like to know more about Veldink wheelchairs, please contact Murray’s Medical.

Does Having a Disabled Child Make You A Disabled Family?

It made me think… and I think he’s right in a way.

As a family what we do is affected by Sam’s issues – he’s in a wheelchair, so if we’re out together and he can’t get into somewhere, then neither can we.

In effect, his disability has become ours.

At the same time though it makes me feel strangely uncomfortable and I’m not sure why. It’s possibly just because I don’t like labels, my son is a little boy like any other.

The fact a list of his various issues, health problems, and disabilities would be longer than your arm makes bog all difference… he is a child, first and foremost.

Children don’t see Sam as any different – it’s the adults who see the wheelchair first and the child in it, second.

Children see a little boy who they would like to chat to, to be friends with. Children think Sam’s wheelchair is cool, and I quote ‘that is so awesome!’

Adults see a child unable to walk and feel pity. Children see a potential new friend.

Access isn’t the only issue however. Isolation plays a huge role in disabling us as a family. When Sam was tiny he was too ill for us to go anywhere, I felt trapped and isolated in our home caring for a seriously ill baby, while his Dad had no choice but to go to work. 

I was terrified of taking him out anywhere for fear of a seizure hitting (an inevitability), fear of how I’d cope.

Fortunately we have good, close friends and family who realised that we needed time and space but not distance, so they made a point of keeping in touch, gently, never forcing a visit but always there if needed.

With time, the isolation improved. Sam improved and we started going out together again.

I felt that pride I had when he was first born return, being able to take my beautiful boy out and show him off to the world – so what that he had seizures, he was still wonderful in our eyes.

From time to time the isolation returns, notably when he’s hospitalised, but now we know how to cope better and to keep in touch.

Social media is far more important as a tool to keep in touch than just to share inspiring quotes or videos of cats doing silly things (although they are incredibly funny, so please do keep them coming).

Not everyone is so lucky though.

Many families and carers are isolated through their role as carers.

If you have a friend who is a carer, keep in touch with them. They may not text back or return your messages but it will let them know that you’re there.

And trust me, they do need to know. And with time, they’ll contact you again… just keep that fine silver thread of connection there.

For a lot of families, it’s the light in the dark that they so dearly need x

When We Found, “Us”, Again at a Pearl Jam Concert

As a parent of children with special needs, this new world has replaced the old world that I lived in.

Life once entailed going to work, bringing home a steady paycheck, and spending, “free time”, with friends.

Once, I went on dates with my wonderful husband regularly and we even spent a night away, from time to time.

It’s hard to remember that world; that previous life. My children are now my world, and they are my life. I love them with every fiber of my being and I would have that no other way.

However, something happened recently that reminded me of who I used to be before this life….I found myself again.

Years overdue for a night out together, my husband and I ordered tickets to a concert on a whim. Our long-time  favorite band, Pearl Jam, was playing one hour from our home.

We heard on the radio that they would be performing and without hesitation, we immediately purchased tickets.

“On-a-whim”, and, “without hesitation”, are words that we thought had vanished from our vocabularies.

Our life is filled with routines, planning, and a reluctance to schedule date night in fear that events beyond our control will force us to have to cancel.

Ordering tickets for a concert, two months in advance, travelling an hour from home, and staying out past midnight had become ideas unheard of!

Leaving home alone together in recent years had become so rare, it had become a special occasion to just grab a quick coffee together, by ourselves. That is just the way it is.

When our date night arrived, we were like two ecstatic teenagers!

Feeling the excitement as the lights went out and the reminiscent music started, I felt renewed.

Seeing the band on stage, while my husband and I danced and sang along to all of our old favorite songs, I sensed the old me resurfacing.

Hearing the familiar music from our youth, and feeling it loudly vibrate down into our souls, we were finding US again.

For a moment in time…there were no meds, no therapies and no meltdowns. There was only the two of US, having our ultimate date night.

While we rushed home after the amazing show ended and we couldn’t wait to kiss our babies goodnight, we made a vow to make time to just be US more often.

When we listen to all those songs now, they have new meaning. They remind us of a simpler time, while simultaneously reinforcing the fact that the old version of US hasn’t disappeared. 

The old me is still in there somewhere, and in most ways, I’m better than I once was. I know now that finding ourselves again and reconnecting from time to time is imperative to stay afloat in this life.

One small piece of advice I offer to other parents and couples in our shoes… Do things for YOU.

Do those things that make you deliriously happy.

Go see that that bucket-list concert, have coffee, go for a long run, hit the gym, go on amazing dates with your spouse.

When you are like us and can’t always find the time – sometimes you just have to MAKE the time!