Fortunately I have a fantastic GP who knew us as a family well and who made absolutely sure that we had support and that I was taken good care of medically; but it was my parents who were the real angels of that time.

They drove the 70 miles to us daily for as long as we needed them, Mum helping with Sam, housework, anything.

But then my Dad started to show worrying signs of memory loss, and was diagnosed with Alzhemier’s and vascular dementia.

Now Dad’s condition is such that he can’t be alone so Mum and he come up as often as possible still, but it is far less often than before and than they’d like.

Not everyone can cope with the needs of a medically complex child, we are immensely fortunate that they can and that Mum has always been very hands-on with medications, learning how to deal with feeding tubes, etc.

Whether it’s a Mum thing or not, I don’t know… but from chatting with other SEN parents it does seem that it is predominately the Mum’s parents who step up to the mark when it comes to supporting the family.

The Dad’s parents do seem to be rather more peripheral, although as always there are exceptions (so groveling apologies if it’s this way round for you!).

In our family, this dynamic is definitely the one we live with.

Our little man’s paternal grandparents being far less willing/able to deal with his daily medical needs, although they still have a full role to play in his lie.

It does, however, make things much more difficult.

My parents live 70 miles away, they live 10 minutes down the road, however are nowhere near as happy to do tube feeds, meds, etc.  

While my Mum will spend the entire day on the floor with our boy playing, doing therapy, etc, his other grandparents tend to be more stand-off-ish and wary.

This, inevitably, causes issues… we would love for ALL Sam’s grandparents to be comfortable with his issues and to be able to step in and help out from time to time, it also have implications for Sam going for days out etc – after all, if you can’t feed him and keep him safe it’s a bit of an issue!

We’re fortunate that Sam has four grandparents who love him dearly, not everyone is so fortunate.

Even so, having half of his grandparents reluctant to help out does make things more difficult; resentment can start to build as one side of the family do more to help, while the other side see it as being the other grandparents spending more time with their grandchild.

You just can’t win. We are however incredibly lucky to have grandparents who *want* to be involved, many don’t have that.

Despite the usual tug of love issues, Sam knows that he is adored by all his family and really, that’s all that matters x

At the same time, I’m scared that he’ll end up atrophying in a school that doesn’t push him and encourage him to develop and progress.

I honestly don’t know what to do for the best anymore, and it’s terrifying.

Currently, we aren’t convinced that Sam’s education provision is the right one for him… his teachers are missing him communicating, and don’t want to believe what we tell them he’s doing at home.

Currently, we’re awaiting a reassessment by an educational psychologist which will (hopefully) make things a little clearer but I’m not convinced that it’ll take much of the worry away.

Having a child with complex issues like Sam is a rollercoaster with even the most mundane things.

We don’t have the same choice as other parents in what school he attends, and the SEN schools by us, while all rated highly by OFSTED, don’t necessarily meet his needs.

Some are a long way away, meaning my little boy has to travel for an hour to get to school of a morning.

Sam like many others, finds himself in a school where the staff don’t have the time or resources to work with him as an individual – bless them, they try their hardest but how can you give one child 100% of your time and attention 100% of the day when you have several other children all needing that same input?

Having a 1:1 is a great help for many children, for us this is just yet another battle to fight as the Council feel that the School doesn’t need a 1:1 for him – I suspect if I have to point out one more time that a 1:1 is for HIM not the school I will probably go completely mad.

Sam’s current school is a generic SEN one. Currently we’re looking at all options including home schooling (something that I love the idea of but would quite probably hate the reality!), mixing days in school with days at home having intensive therapy and going to a different school full time.

Each option has its pros and its cons.

What we want from schooling is for Sam to learn how to be the best he can be!

I’m not fussed if he doesn’t go on to be a scientific genius a la Stephen Hawking, but I do want him to be able to live happily in an able bodied world, to be able to communicate with people and to be able to have a degree of independence.

I want him to learn how to control his random movements to allow him to use his hands purposefully, to learn sign language so he can let others know what he wants/feels.

I would LOVE him to be able to have a greater control over his body, so that he has an improved chance of being mobile, even if that means he is in an electric wheelchair but can control it himself.

My goals for my sons education may have changed significantly from those I had prior to his birth but the basic aims are the same…

I want my son to be happy, healthy and able to enjoy the life he has.

The worst disability in the world is a bad attitude, my little boy along with all his friends will do whatever they put their minds to x

It is something universally hated by all SEN parents – from the joys of badgering school/council etc to get the right forms out to the right people on time, to the moment when you actually do say “you have got to be joking” down the phone to a harassed, innocent individual from the Council transport team who has drawn the short straw of having to tell yet another parents that they can’t find a suitable escort for their child.

Trust me, you are not alone in this.

We knew early on that Sam’s seizures meant he would be far better placed in a SEN environment where the impact of his seizures was understood and the relevant support was in place with a 1:1 (that, dear reader, is a post for another day).

We started the process in April 2014, ready for him starting school full time in September.  First nightmare; getting school to fill in the cursed discretionary funding form and getting it BACK to the right lady in the council.

By the end of the summer term, school closed and still no form had arrived at the council.

By August, with my return to full-time work imminent, let us just say stress levels were stratospheric … the phone was going off every other hour as I tried, together with the SEN and assessments team at the council, to find a way around the lack of form… eventually and by the grace of God, funding was approved and the search for an escort could begin…

Ah, escorts.

We foolishly thought they’d find one in no time. Wrong again.

Some of the issues we discovered are:

1. None of the escorts are trained in how to recognise/deal with seizures – quite an issue when around 1/3 of their passengers are likely to have seizures as part of their condition.

2. In the school transport provided, there is one escort for maybe 2-3 children; all with differing issues/needs which could be physical, behavioural, or a.n.other.

3. In the event of a seizure, policy is to pull over and call an ambulance; said child is then transferred to ambulance and sent off to hospital while the others go on to school. Alone. Sam is non-verbal, like Hell am I going to allow this to happen.

4. And my favourite – the transport taxis are not allowed to carry more than 1 oxygen cylinder…. which meant that if there were more than two children on the taxi who carry oxygen, one would have to go to school without it.

Genius.

My favourite suggestion was that the four children in Sams nursery class who all had uncontrolled epilepsy could share a taxi together.

See points 1, 3 and 4 above.

Once I’d finished laughing hysterically and could actually get the words out, I explained as gently as possible why this would be a very, very bad idea indeed.

As a rule in one child starts to have a seizure, another will follow suit – it’s as if they don’t want to be left out – then the others may join in too.

You see, for reasons unknown to the world of medicine, children with epilepsy seem to spark seizure off in each other; whether it’s the stress/anxiety that comes from the carers that tips them over, we don’t know.

But any SEN teacher will tell you that it happens.

So. Here we were half way through September with no transport sorted. Both Sam’s Dad and I were working full-time so it was a bit of a nightmare.  Eventually, Jonathan’s Mum stepped in as an escort and at last, Sam could get into school!  Not everyone is so lucky – J’s parents only live 15 minutes away from us, and his Dad gives him a lift to work every day as they work in the same place.

So if you’re going through the turmoil of trying at arrange transport, my one piece of advice is to keep on at them!  You’ll get there, eventually, but be prepared for a few more grey hairs by the end of it all x

I just know that I wanted to scream. Our council DFG team OT is lovely.

But we live in a 1930’s semi-detached house with steep stairs, no landing to speak of and which has been extended by previous occupiers giving a lovely, quirky family home.

With steps everywhere.

We bought this house to raise our family in, so talking about what they want to do the change it is upsetting because it Should Not Be This Way.

Sam is only 3, he’ll be 4 in April. He’s tall too, at just under 1m in height, but like his Dad he’s slender.

We have to lift him everywhere, upstairs to bed, into and out of the bath, into his wheelchair to go into the garden; steps really don’t help the issue.

And as his Dad and I are not getting younger, our backs, arms and muscles are starting to show all the signs of too much lifting, wear and tear.

So, we reached the conclusion that adaptations needed to be discussed.

After talking with the OT we learnt the following:

1. All staircases are not created equal. Ours are too narrow and too steep to safely put a stairlift in place; no landing means the lift wouldn’t be able to turn, plus with Sams seizures he could be injured.

2. A stair climber is also out of the question, see point 1.

3. The only option would be a through floor lift.

4. Our bathroom is too small to adapt so a downstairs bathroom would need to be built

5. We wouldn’t be able to put hoisting tracks anywhere in the house, due to the difficult shape of the rooms The problems in our current house are not unique nor particularly unusual.

A through floor lift would be HUGE and we’d lose half our front room and a bedroom.

The DFG grant wouldn’t cover the cost of an extension AND a lift so it would be one or the other – and even with a lift Sam wouldn’t be able to access the upstairs bathroom.

Which left us with a big decision to make; do we stay and make do, or move house?

After much soul-searching early in 2014 we decided to move. We started to look round for suitable properties – we really wanted a bungalow we could adapt, or land to build our own place.

We put our property on the market in May 2014. It meant that we in effect drop out of the DFG process for the time being, and will need to reapply once we’ve moved.

This will mean around a 6 month wait for another OT to come and assess Sam again. We can live with that, if it means Sam gets a home he can actually live in and access!

Councils will only deal with access into and around a property, so access to gardens isn’t covered (apart from allowing you to get OUT of your house and INTO the garden – if this means you can get onto a patio but no-where else, tough.

However, this morning we’ve had a breakthrough.

Almost a year ago, when we first started looking we found a dormer bungalow, set back off the road with a large garden.

It looked like nothing from the front or from the pictures, but the floor plan showed that we could easily move Sam around it in his chair, and hoisting could be put in at a later date.

We never imagined almost a year on we would still not have sold our house.

However, we did find out that we can rent our existing place out; this would cover the mortgage and allow us to move… and the property we loved was still on the market at a lower asking price.

This morning, we put in an offer and after a bit of haggling agreed on a price.

Fingers crossed everything now progresses swiftly and smoothly!

We will be living downstairs in the new place until we can afford to have adaptations done and we’ve been through the DFG process again… its going to be tight financially but we’re determined that Sam will have a home that is not only accessible to all of us but that does not look like a hospital ward!

We’ve already been researching bathing aids/wet rooms and know we’ll have to cover a lot of the cost, but Sam spent most of his first year in hospital, including his birthday; we’ve all seen enough of the inside of a hospital to know we don’t want to feel like we’re living in one!

As the move/adaptations progress I’ll update with what we’ve learnt etc… fingers crossed please guys x

Sam, like many, many others, does not have a definitive diagnosis that explains why he has the range of issues he has.

It also means we have no prognosis to allow us a glimpse of what the future may hold, or to guide us as to the best therapies to bring him on developmentally.

We are, to put it plainly, in the dark.

When Sam was first admitted to hospital with seizures, the neurologist was very careful with his words as he gave us the results of the MRI scan… although there were changes, it was unclear what those changes meant for our baby. 

As he gently explained, we don’t perform MRI scans on healthy infants, so it would be a waiting game to see what those changes might mean or if they were just part of normal development. 

Sam was, after all, an early baby.

He had stopped growing suddenly at 35 weeks into the pregnancy and arrived by emergency induction of labour shortly after. 

He was ready to come, the induction went smoothly and I didn’t need any additional hormone therapy to get things moving! 

Seeing some developmental delays is normal in early/premature babies, and more often than not they make up that developmental ground as they grow older until there is no difference between them and their peers born at full term. 

Prior to Sam’s first seizure, there had been signs that all was not well; his development was indeed delayed and he struggled to gain head control, his visual tracking abilities seemed to be regressing rather than improving.

After several weeks of feeling increasingly uneasy, I had finally managed to get our health visitor to take my concerns seriously and she was due to check him over a couple of days later…

Sam had other ideas, and threw that first seizure before she had a chance! The first weeks after that seizure were terrifying.

Sam had experienced a life-threatening complication of epilepsy termed status epilepticus while at the hospital.

In effect, the seizures were not stopping and unless they were stopped medically his heart would start to struggle to put him at risk of a cardiac arrest.

He was all of 14 weeks old.

But we knew about epilepsy – we just needed the right meds, ok?

Over the weeks that followed it became apparent that seizures were just one of Sam’s problems.

His head control was cause for concern, the changes to his vision were seizure-related but that didn’t explain why he had such low muscle tone and was floppy as a newborn.

He made a really disconcerting noise when breathing, as his airways were floppy too.

He was, however, growing well and gaining weight which ruled out a lot of conditions fairly quickly.

Before he was even 6 months old, Sammy had experienced multiple blood tests, lumbar punctures and all sorts of other procedures to try and find out what was wrong.

All the tests came back negative – as far as anyone could tell our boy was absolutely fine, although it was very, very obvious that this was far from the case.

As he has grown older, more issues have become apparent – Sam has a dangerously unsafe swallow and aspirates fluid and food into his lungs instead of swallowing them fully into his stomach.

As a result, he is now 100% tube fed.

This, however, has uncovered some new issues – Sam seems to hold food in his stomach far longer than usual, and his gastro team is currently looking into whether he has true delayed gastric emptying (gastroparesis).

His reflux has become more evident now he’s on a liquid formula diet instead of solid food, and this is playing havoc with seizure control.

It took us 2 more years before we had any answers at all to explain Sam’s disabilities… it was a second MRI and a very determined medic looking at the scan very, very carefully that identified the areas of abnormal neuronal migration that gave Sam a diagnosis of polymicrogyria.

PMG, however, is a description of the condition rather than a diagnosis as such, we will in all probability never know why our little boy’s brain didn’t form correctly; multiple causes have been identified including genetic, infection, etc.

Sam’s neurologist is certain that there is a genetic cause for Sam’s PMG as it isn’t diffuse but has occurred in specific regions of his brain.

However, finding the answer would be like looking for a needle in a haystack, and after much discussion, we have decided not to put Sam through any more invasive tests unless they are absolutely necessary.

We have decided not to pursue a diagnosis at all costs. Instead, we are starting to accept the hand that fate has dealt us, and are loving the child we have been blessed with.

So, what does it feel like to have a child with an undiagnosed condition? It is far more difficult to get answers from professionals – many symptoms our children experience are generic and may or may not be related to their condition.

Many symptoms appear to be totally unrelated, such as slow growth and sensory processing issues.

Many of our children have problems affecting more than one body system – in Sam’s case he suffers neurological and gastro issues.

In many cases the Doctors are as much in the dark as we are, and that is a very difficult situation to be in… we *need* the Doctors to know what to do and to have a clear plan of how to treat our children, but when they themselves struggle to make sense of the puzzle it feels very isolating and very, very frightening.  How can we make the right choices as to treatment when the people who know most about the therapies etc., are unable to advise us?

When a child has a recognised disability, getting help from local authorities, charities and other support agencies are significantly easier than if you have to say that your child has no confirmed diagnosis.

It is also the most frustrating experience I have ever known.

In Sam’s case, his physical issues hide his true potential – being undiagnosed makes it too easy for the powers that be to say he is less capable than he is, and it makes it a very difficult battle to fight.

But with all the negatives come quite a few positives.

We have no prognosis to read up on, or to scare the wits out of us!  We have to live day to day, just like any parent would.

There are no limits placed on Sam as to what he will or won’t be able to do, we just have to work with him a do our best for him.

If a therapy doesn’t help him, we ditch it. If one does, despite the professionals saying it wouldn’t, we continue.

In the past 4 years, we have learned what we are capable of, and it’s far more than we imagined… we’ve discovered how strong we can be, too.

Sam shows us what it is to love unconditionally, and we, in turn, adore our little hero.

Due to the strong likelihood of a genetic link, and given issues I had during the pregnancy, we have made the decision not to have any more biological children; we just couldn’t put another child through what Sammy has fought through.

Does that mean he’s any less of a joy to have in our lives? Of course not. Undiagnosed he may be, but his story is only just beginning x

And Sam loves each and every one of them; he adores watching the colourful fish in their tank, stroking the cats and laughing at Sid’s comical strutting around the garden!

So, when a friend mentioned about taking their child who has severe CP horse riding and what a difference it made to her, my ears pricked up.

Although not very good at it, I used to ride in the past and still enjoy the company of horses so I started to research this potential activity for Sam.

I rapidly learnt that there is a form of physiotherapy done on horseback called hippotherapy, and that it can be very good indeed for kiddos with disabilities such as Sams. The main issue was availability.

We live in Stoke on Trent and while there are plenty of stables offering riding for the disabled, none offered the hippotherapy we were after.

After contacting many stables and being given contacts for OTHER stables I eventually spoke to a wonderful lady based in Shrewsbury.

Lyn was a physiotherapist who had specialised training in hippotherapy and was happy to give Sam a try out session, as long as we were happy to bring him down to Shropshire.

Frankly, I’d go to Mars and back if it would help my child… Shrewsbury not a problem!

On arrival the first thing we noticed was that we did not stick out as being the Family with the Disabled Child.

There were children with all manner of issues here, but all had one thing in common.

The moment they sat on one of the horses, they relaxed. They sat up tall, smiles across their faces.

Horses are remarkable creatures; big and heavy, they move with a quiet grace and would stop if they felt that the child wasn’t secure.

Each child was supported by two helpers, one either side of the horse who was gently led around the paddock by a third assistant.

Seeing the profound effect the animals had on these children made us all the more determined that we wanted Sam to try this out, so at the end of the session he was gently lifted on to a particularly gentle pony named Teddy.

Teddy stood patiently while the staff made sure Sam was lying comfortably across the his back – due to Sams low tone he is unable to sit unsupported, so lying on the horse allowed him to experience the therapy and relax.

Apparently when horses walk the movement is very similar to that of a human walking…

The child has to constantly alter their position subtly to maintain balance, the more experienced children work through various therapy programs involving them stretching their muscles and balancing on the horse without holding on; as this was Sams first time on a horse he was allowed to just chill out!

At the end of the ride, as Lyn lifted Sam off Teddy, the pony turned his head and gently nuzzelled our little boy as if to say hello properly.

Sam had a huge grin on his face, and we were hooked.

Sam has now been attending fortnightly hippotherapy sessions for over a year.

His core strength has improved significantly, as has his sit balance. Due to the unpredictable nature of his seizures and the frequency with which he experiences them he usually doesn’t ride the real ponies, but uses the stables fabulous mechanical horse.

This incredible piece of kit mimics the movement of a horse perfectly, allowing Sam to access the benefits of the therapy in a safe manner.

During his sessions his therapist will have him sitting or lying across the horse and uses various techniques to encourage him to use his own muscles.

A few weeks ago Sam was able to try out his new found strength and skills riding Teddy, the lovely pony who’d been so gentle with him on our first visit.

Let us just say there wasn’t a dry eye in the place as our little boy sat up straight and tall (granted, Lyn had a hand on his back but he did it!).

The difference in his strength was evident for all to see, as he watched Lyn tell him what she wanted him to do.

Proud mummy moment? You betcha.

Its hard work for the children, Sam usually falls asleep during the hours drive home, but the benefits to his overall development and well being have been fantastic.

Would we recommend hippotherapy? Absolutely and without a second’s hesitation.

Sam was granted physiotherapy on the NHS for all of 12 months; once a fortnight. The reality being, that if PT was going to strengthen his muscles and keep his joints supple and mobile, this would be something he needed *daily*.

Cue the parents struggling to squeeze in one more round of therapy before school/tea/bedtime.

Why can’t therapy be more FUN??

Those who know me know that I am passionate about one particular therapy.

Snowdrop is different to other therapies; it is based strongly in scientific research, although at time the methods seem a bit, well, bonkers!

But first, some history… When Sam was around 14 months old he was virtually catatonic.

The seizures plus the powerful drugs used to try and control them were taking their toll and our boy could barely lift his head off the floor let alone don anything else.

Things were bleak and like most if not all SN mums I spent an alarming amount of time researching therapies, treatments, etc. ANYTHING that might help my boy, I looked into.

But I’m lucky, I’ve got insider knowledge…

I’m a scientist working in healthcare, so could identify which therapies were worth looking into which others were, well, not.

So, I trawled the scientific literature endlessly.

Then out of the blue, someone on another support group asked if anyone had tried the Snowdrop method… type type type into Google… and there it was. Snowdrop for brain injured children.

As I read I could feel myself getting excited – the therapy is based on what we have known for many decades; the brain doesn’t stop developing when we’re born but continues to form new connections between neurones and reinforce connections that are used repeatedly.

The posh term is neuroplasticity and it’s how we learn. So all the people telling parents that a child’s brain was damaged/malformed therefore they would never develop were inherently WRONG.

An email was sent off to Snowdrop that evening. And in the morning, a reply!

At this time we had no idea why Sams brain was misfiring so spectacularly; all we knew was that his prognosis was gruesome; lifelong seizures, severe learning disability, likely autism, severe visual and auditory impairment due to seizure activity.

What did we have to lose?!

So, when Sam was 18 months old we packed the car and drove down to the other end of the UK to Devon, to meet with the founder of Snowdrop, Andrew and his wife Janet.

That first meeting changed everything.

You know that horrible feeling when you go into an appointment with your child, they’re poked and prodded, lots of tuts are made, then the Dr proclaims that there is little/no hope or that the issues aren’t treatable?

Now imagine the opposite. Andrew watched Sam, intently from the moment we entered the room.

He assessed Sam as a child, not a collection of symptoms, and watched everything he did, how he responded to different stimuli and people.

He explained everything as he went along.

Eventually, he sat down with us and explained that our little guy wasn’t sensing the world as he should be – he could barely feel anything on his arms yet his feet were exceptionally sensitive to touch, to the point that it could be painful for him.

He was displaying a lot of newborn-type reflexes and was hypersensitive to sound in the range of the human voice – he literally switched off when we talked to him as it was uncomfortable for him to listen.

Andrew was excited by Sams potential and couldn’t wait to get started working with him – most therapist were doom and gloom, this was entirely new to us!

We left that meeting exciting and for the first time since the Sams nightmare began, we had hope for his future.

We’ve now been following the Snowdrop program for over 2 years.

In that time the following has happened; Sam has regained purposeful vision (something the opthalmology team couldn’t believe until they saw it for themselves), his hearing has pretty much normalised and he understand basic instructions; his tactile sensitivities have completely gone and he now feels the world as he should do.

He is no longer a catatonic child, unable to coordinate the simplest of movements – he has finally gained head control!

He can roll over, both ways, can kick, pull and push. He is learning to sit up and develop a sit balance. He is trying to stand.

Far from being non-interactive, he is a monkey who loves to play with Mummy and Daddy, and who thinks the cats tail is the best toy in the world.

Ever.

His eyes sparkle now as he realises how much world there is to discover… his neurologists eyes filled up when he saw Sam playing with his Dad, giggling like a loon as Daddy tickled him.

This man has been with us since the very start of the seizure Hell, and knew how horrifying the prognosis could be, in his words he was watching a miracle take place.

Snowdrop is not a cure all, nor a guarantee of success.

We simply don’t understand enough about the brain, and there will always be children who don’t respond or do so more slowly that we’d hope.

What it IS is a way that we as parents can harness our childs natural abilities to remould the brain and work around damage/problem areas.

Sam can’t crawl, but he’s worked out how to wriggle his way across the floor to where he wants to go.

It isn’t exactly coordinated yet, but its coming.

Andrew and Jan have had first hand experience of SN; the charity was set up as a legacy to their eldest son Daniel who passed away in his teens as a result of devastating brain injuries sustained at birth.

They have an empathy with SN parents, and understand how desperate we can be to help our children; each childs program of activities is designed for THEM and involves stimulating the areas of the brain which are not functioning as they should be.

It is a case of repetition to form new brain pathways, like learning to play an instrument… the more you practice, the better you become.

In the same way, we aim to do Sams entire series of exercises 4 times every day; each exercise takes a few minutes only and can be fitted in around our other activities.. although it took a while to get into the swing of things, its now second nature to do a couple of bits in the morning before school, then another couple when he comes home again.

He has a therapy CD to listen to, 20 minutes at a time.

Andrew and Jan are always there, supporting, encouraging, tweaking programs for each child as that child progresses.

They remind us that child development is not a set series of stages but a continuous process… in Sams case his motor skills are profoundly delayed – but in order for him to gain motor control, first he needs to get his tactile perception sorted, then he needs to understand how his joints move, THEN he can start to try and control his movement on the floor (wriggling, kicking etc).

And only once those building blocks are in place can the bigger changes start to occur.

It will take years of intensive therapy to overcome Sams difficulties and we have no way of knowing how far he can go but we’re not going to stop trying!

Honestly, I’d recommend it to anyone and everyone…. After all, what have we got to lose? X

So far this week we’ve bought a new house, agreed to rent our current one out / changed our minds and think we’ll try to sell it again before we move / decided to rent it out again, signed the paper work for the new WAV to make travelling easier on us all, and I’ve taken delivery of a new piece of equipment for my craft/jewellery work.

My brain really, really hurts.

Sam seems to know this, and therefore feels that what Mummy needs is to be kept awake all night so she doesn’t have to worry in her sleep.

Gaaaah. Pre-Sam, buying a car was also a simple affair of how much can we afford then finding a car that fit the bill within our price range.

Since Sam, such mundanity is long gone… I think we’ve test driven more vehicles in the past 6 months than I have in over 15 years!

The new car needs to be wheelchair accessible – we originally thought we could get away with a normal car and put his wheelchair in the boot… then he got a new wheelchair that doesn’t fold down so much.

Cue rethink.

We were introduced to the lovely people at Motability, without whom I can safely say I would have lost my mind months ago, and who gently guided us through the process and yet I still manage to get confused; by being on the scheme, we in effect sacrifice Sams mobility component of the DLA so it goes directly to the motability charity.

In exchange, we get a brand new car every 3 years (5 for WAVs), and our insurance and breakdown cover are included.

It took a lot of number crunching but in the end we worked out that it would save us a LOT of money over the course of 12 months.

Not to mention the reduction in strain on our aging bodies… Sam is 3 and tall.

Very tall. And very floppy due to low muscle tone. Getting him into his car seat has become more and more difficult as he’s grown bigger and, frankly, it isn’t very dignified having your Mother hoik you up by your pants and in effect drop you in a chair, only then to wiggle your bottom back into the seat and straighten you up so you’re in the right position to do up the straps!

Poor mite.

So, early last year we decided that once he got high rate mobility as part of his DLA (when he turned 3) we’d apply for a wheelchair accessible vehicle for him.

I have to say, the process has been relatively straight forward but the financial side of things scares me.

Sam has a lot of equipment we have to transport with us – oxygen, suction machine, specialist chair, standing frame – and come June 2015 we’re getting a puppy to begin seizure alert dog training, so a dog crate also needs to fit in.

All of this means that a standard Citroen Berlingo or similar simply won’t be big enough to accommodate all his STUFF.

And that pushes the cost up through the roof.

After trying various vehicles we settled on a VW caddy 4life; Sams wheelchair sits in between the two passenger seats at the back, so its easy to reach him in an emergency and get his oxygen on him, he loved how smooth the ride was in the 4life and really loved the view he gets through the front windscreen!

The only issue is the £6500 advance payment we need to find.

A lot of people we’ve spoken to have cheerfully informed us that we’ve so lucky because we can get a brand new car for free… and it tests my patience every time as I smile sweetly and explain that while that may be the case if you don’t need major adaptations to the vehicle, if you do then you still have to pay *something* towards the cost of those adaptations.

Adapting a vehicle to take a wheelchair isn’t just a case of removing a seat in the back and adding securing straps – the car needs reinforcing underneath to support the wheelchairs weight, suspension needs to be tweaked to ensure a comfortable ride, and winches need to be considered as some of the wheelchairs out there are really heavy.

Motability DO have a grant scheme which we’re applying to, but we’re pretty sure our income will mean we won’t be able to get much if any help.

Still, this is something that will have a huge impact on all of us so we don’t really have a choice in the matter – paper work was signed on Monday, and the 4life should be with us in around 2-3 months 🙂

The financial pressure on charities means that most are now means test, and will only be able to help if you earn below a certain threshold.

However there is help available if you know where to look for it.

1. Know your tax credits – Even if the answer is no, it pays to find out… we didn’t think we were eligible but we are, for child tax credit due to the severe disability element.

So, apply.

2. Don’t be too proud or ashamed to ask for help – charities are there to support families like ours, if your child needs something and you can’t get funding anywhere else, find a charity who can help.

3. Apply for DLA, and don’t be afraid to appeal a decision if you disagree with it – the DLA form is, I grant you, hideous.

Even the helpline staff agree that its hideous!

And its tough as Hell having to write it all out in black and white but it really does take a strain off you financially.

For years, we assumed we couldn’t apply to charities like Family Fund because we weren’t getting child tax credits.

It was only after a chance comment by another SN mum and friend that made me look again at the awards letter; we’re paying off an over payment made in error y’see, so don’t get a penny in tax credits… but there it is, in big letters on the front page – we ARE eligible, it’s just that the money goes to pay off the over payment.

But after double checking with FF we are indeed eligible.

Don’t fall victim to assuming that you can’t get any help or support because you earn a set amount or because (like us) you don’t think you’re eligible – one thing I’ve learnt from having Sam is that there is a phenomenal amount of good in this world, and the number of people who want to help are far greater than you could have imagined.

Don’t struggle on in silence – if the OT or PT says your child would benefit from x, y, z piece of equipment but the local authority etc can’t fund it, don’t assume that its hopeless and you’re child will suffer because they don’t have to 🙂

The help is out there, we just need to ask x