I remember asking my Health Visitor how you wean a child who is blind? And she told me that you did it just the same way as you do a neuro-typical child.

As it turned out of course, many, many other factors would come into play to make Alex’s eyesight the least of our worries.

So far down the pile it is – behind inability to walk and talk – that sometimes I’m genuinely surprised to see a note from his school that his visual impairment teacher has been in. But I digress. We started with baby rice (yak!) and moved through to baby porridge, so far so good.

But it turned out Alex had an aversion to a) certain textures and b) chewing. It’s effort Mummy.

So my freezer filled – and filled – with more puree’d and mashed food than I had ever done with Emma.

Night after night I did this as it was impossible to do it during the day.

My fridge covered in meal planners – 2 cubes chicken casserole, 1 cube broccoli (lucky boy) – weeks in advance.

Nursery was a godsend as suddenly it wasn’t just me doing all of this and their kitchen staff were brilliant – never too much trouble to mash/ blend/ serve something else if he just couldn’t manage.

Often he’d use his tongue to help mush it in his mouth. Or pop his thumb in his mouth to help.

It wasn’t pretty, but it was going down.

Delayed development meant his mouth muscles just weren’t there yet and, it turned out, he was too busy just trying to sit upright – there was no cognitive space left over to chew as well.

It was just like trying to pat your head and rub your tummy.

And then he was able to sit up independently. And suddenly, after what felt like an age of puree’d mush, of buying jars to take with us so we could go out somewhere as a family, little cubes of food became an option.

And little cubes became bigger cubes and suicide watch became less of an everyday occurrence (as, yet again, he’d choke on a piece of overly optimistic-sized meat) and he was able to eat every day food cut up into normal sized pieces.

In one of those moments of development not working in isolation… as those muscles improved he was able to make some sounds.

My little boy ‘spoke’. I heard his voice. I cried.

He’s babbling you understand, streams of nonsensical noises ‘dubbuh-dubbuh-dub’ being a particular favourite of mine, but there he is. In the room. Joining in the conversation as only Alex can.

We have a long, long way to go. Alex can finger feed beautifully, but he doesn’t always know when to stop, so you have to watch him the whole time to stop him over-stuffing.

He will pick up a loaded spoon or fork, but hasn’t yet worked out how to dig back in again for a refill. Sometimes he’ll just throw the fork down after taking the food.

This requires patience from us. And a lot of spoons.

But at the back of my mind as I watch my nearly five year old boy being spoon fed, flapping inappropriately, flinging his sippy cup across the floor and I know that – to an outsider – this must seem a ridiculous life to lead…

I am immensely proud of my boy. And I’m proud of my family too. For riding it out. For accepting him for who he is. And for helping make it happen.

A full-time, stay at home mom, spending my days like many others.

I get two children off to school, sort the laundry, clean the house (to some degree) and run errands for my family.

I help my son with homework, and then I make dinner every night.

Bath time and bed time routines are an important part of our evening.

These are all familiar activities that so many moms who stay at home raising children experience every day.

Beyond these typical daily duties, I am a Special Needs Mom.

My work day begins at 6:00 am and continues on, sometimes through the night.

Mornings entail measuring medications, bottle feeding my four year old daughter, and sticking to a strict routine to keep my eleven year old son calm and on task.

Hours are spent scheduling physical, occupational, social and equestrian therapy sessions, as well as routine and specialist doctor appointments.

Too many hours to count are logged contacting insurance providers, paying visits to school officials (I’m sure they LOVE to see me coming!), calling pharmacies and medical mobility equipment providers.

Attending therapies, and carrying over the learned methods at home take the place of hours once spent behind a desk in the working world.

Preparing special, high-calorie pureed meals and searching for gluten-free alternatives now replace taking leisurely lunch breaks.

Then, there is the overtime put in researching homeopathic remedies, breakthrough therapies, communication and behavioral tools.

On a really ambitious day, I even manage to take a shower!

These are just some of the duties that I am responsible for in my job description of Special Needs Mom.

These tasks, as mentally taxing and exhausting as they can be, are proudly carried out with love each and every day.

And you must know, they truly yield the most beautiful rewards.

For this line of work, there is no paycheck, and there are no paid vacation or sick days.

However, a bright smile and a giggle from my amazing daughter or a tight hug from my incredible son is PRICELESS compensation.

They make all the difficult moments of my day melt away, and they are worth every second of it.

Life is not easy being a Special Needs Mom, but each day my heart overflows with the joy that my children bring.

I find myself to be so much more grateful at this point in my life than I have ever been.

This roller coaster of a journey that I never expected to take has become the beautiful path that I was always meant to travel.

The seat can be moulded to fit the individual child if there are postural implications such as spinal curvature etc., or can be a standard fit.

While not a postural support device it has given Sam a comfortable place to rest and relax… due to his low tone, Sam is very delayed with his motor skills and is very floppy especially when tired; things like sitting on a sofa safely without full support just aren’t possible for him.

When he was dinky, we could sit him on our laps and support his body with our arms/strategically placed cushions… however he is now almost 1m tall and sitting on Mummies lap at least isn’t very comfy anymore!

Enter, the P-Pod. Sam *loves* his p-pod.

He can relax in the seat and go to sleep in there if he so wishes.  When he’s had a seizure and aches all over, we pop him gently into his p-pod and tilt it back so he can fall asleep if he needs to.

The waist straps are wide enough to be comfy but keep him safely in the seat so if he seizures whilst in there he’s safe.   And it’s light enough to move between rooms as needed.

For me the biggest plus is that it looks so awesome! The covers are lovely bright colours (Sam’s is bright blue), can be personalised, and are easy to remove for washing (unlike SOME of his equipment I might add).

It doesn’t scream ‘Special Needs’ at you like the oxygen cylinders, triton postural  support chair and standing frame all do… it just like an incredibly cool beanbag chair 😀 And we all love it completely.

However, getting the funding for one isn’t necessarily simple.

Sam’s former community Physio dislikes them with a passion as they don’t provide suitable postural support…  that is not what they are designed for.

Think of a dining chair – perfectly suited for supporting your posture whilst eating. Now imagine having to sit in that high/rigid back dining chair at ALL TIMES.

Hardly comfy or relaxing are they?!

I agree, Sam needs the firm postural support he gets from his other chair when he is eating, as it keeps him safe and allows him to eat safely… but just because he has additional issues, why should he not be allowed somewhere comfy to just chill out in?

As statutory services are only required to provide one piece of safe sitting equipment for him, they are under no obligation to provide another for the purposes of relaxation.

Fortunately, Sam’s OT agreed that it would be beneficial for him to have a p-pod and supported our application to a charity for help funding it (even though she did get in trouble about it and had to give us written instructions for use to appease PT 😉 ).

I honestly think it’s been one of the best piece of kit Sam has ever had – purely because it allows him to just be a little boy and watch cBeebies in comfort. Cx

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

And it has only been through talking to other parents of children with additional needs that you see this is a common thread.

It’s like they weren’t quite ready to come out yet – they still had some growing and developing to do.

Alex outgrew his moses basket in no time.

We noticed he flailed a lot in his sleep then, so we swaddled him up and it worked like a dream.

He seemed to like the security of it.  The closeness.  The contained space. His cot worked fine too.

Here we used the wonderful grobags his sister had had and here began Alex’s long association with his sister’s hand-me-downs – pink and red grobags merged into pink and red quilt covers as we moved him into her old toddler bed.

This was a huge moment for me, for us, Alex was no longer a baby but showed no sign of toddling.

He was our non-toddling toddler.

In his big bed. And it was here that we began to diverge further and further from ‘normal’.

He was ok in this bed so long as he didn’t try to get out.

With no sense of danger we knew Alex would have no qualms about trying to get out.

Although for a while he didn’t.  He would often wake up in the night, but he would just lie there, chatting, stamping his feet till he went back to sleep again.

Then he realised that if he wiggled, he could move himself out of his bed.

On the one hand, this was a huge developmental step, on the other… a bit of a problem.

Not knowing he was safe meant we couldn’t sleep soundly.

Every bump led to us running into his room to make sure he as ok.

For a while we got around this by tucking him into his bed extra super securely.

But once he learnt to sit up we knew it was only a matter of time before he worked out how to beat that too.

It was like a super slo-mo Krypton Factor.  Briefly we had a bed delivered by our OT.

Oh God that bed.

I don’t know what I was expecting but… a huge single bed, with a washable mattress, cloth sides to keep him in… it smelt of hospital, of ill, of I don’t want it in my house. Take it away. This is not a boy’s bed.

And just like the book… I sent it back.  Crying. Briefly we had the safe sides bed.

I loved this.

It was beautifully enclosed but still a little bed like.  It made our holidays possible. But he was still a step ahead of us – one day I found him launching himself over the sides with glee ‘Mummy, look at me!’ all over his face and all I could think was ‘Oh.  Oh.  Now what…’

So for the next seven months he had a make shift bed on the floor.

He went to sleep on a blow up bed against the wall.

There was a sofa butted up against it that was too tall for him to climb over and a bookshelf at the bed’s foot that was too heavy to push over.

It wasn’t pretty.

It wasn’t the bed I’d dreamed of.

But it worked.

It worked for far longer than I was expecting as the NHS system creaked into action.

We viewed high sided beds, quotes were produced and recommendations were made.

These beds are expensive.

They are bespoke and made in small numbers.  So we crowd funded the money.

No, we didn’t, but it felt like it. Some amazing friends of ours did a trekking fundraiser for us.

The county council put some money in.  Every county is different in how funding is arranged.

Here the county puts a set amount towards a bed – something every single child needs – and then they go out to charities to help fund the remainder.

Thank you Newlife.

Thank you everyone.

This is his bed now.

A high sided cot with perspex sides and padding at each end.

It was never the bed of my dreams.   Never where I could have expected he’d sleep.  But it is comfortable.

We can snuggle in with him at night.

In the morning when he wakes up we all dive in.

And he sleeps well.

And he is safe.

So we sleep.

That is the story of sleep in our house.

Skidders

We have kneepads and socks by Skidders that help our son get a little more traction when he is playing along the floor on his Scooot.

The kneepads have little gripper dots all across the surface to help grip the floor as your little one moves.

We also have shoes by Skidders that have a gripper bottom that wraps all the way around the toes.

These are great for the times your child really wants to use their toes to help move but normal socks are too slippery.

Scooot

Our son loves his Scooot.

At twenty months old he is not zipping along the floor as quickly as I hope he someday will, but he is content to be lying on his belly and kicking his little legs and feet to propel himself across the kitchen floor.

We can appreciate the fact that this mobile toy was invented specifically for children with special needs, and it will grow with him as he learns to sit on his own!

Peek-A-Zoo apps

You can download the lite version of these apps to your iphone, tablet, etc. and have a quick interactive game for your child to play.

Because our son is young and therefore has a short attention span the free lite versions of the Peek-A-Zoo apps is enough to entertain him.

We like this series because of the bright colors, sounds, and because the screen is easily activated by touching anywhere on the screen.

This is important if your child has a difficult time hitting a small target.

Our son can touch his hand or fingers anywhere on the screen and get visual and auditory reinforcement.

GoTo Seat

We love our GoTo seat.  It comes with us to restaurants, in the stroller, to the grocery store, in the wagon, to the dinner table.

It affords our son many more “normal” experiences than he would have without it.

Owl Pillow

I originally purchased this little Skip Hop owl pillow to support our son’s head and neck better in his gait trainer as he had weak neck and shoulder muscles.

It served its purpose there, and we have continued to be able to use it in the stroller or car seat for a little extra support.