However, I was not prepared for the adventure of getting Zachariah an EHCP ready for school.

Thinking about school alone comes with too many questions, worries and unknowns, so add in a legal document and I’m totally thrown.

For those of you who haven’t reached this particular milestone, I’ll enlighten you a little bit.

An Education, Health and Care Plan is a fairly sized pile of paper consisting of reports from professionals, aspirations and goals from parents and outcomes developed from all the information.

It’s a document that should clearly state the needs of your child and how they are going to be met.

Sounds pretty awesome doesn’t it?

And to be fair, it is, when everything is correct and both parents, professionals and your local authority are on the same page.

But reality is, it can be a very stressful process, full of reading, re reading and reading again, then highlighting everything you are not too sure about.

You end up fighting for things to be in it, amending adjustments and feeling unsure if it completely represents what you want/need for your child.

It can be an extremely emotional document and hard to digest too.

I particularly found it difficult writing Zachariah’s hopes and dreams for the future.

My ultimate goal for my son is for him to be happy and healthy.

So, when you are living a battle with health and you are losing a lot of the time, it can feel like such a distant goal.

And of course, not forgetting the constant battle with happiness, as like many other children with life limiting conditions, if they’re not 100%, chances are they are not happy.

So straight away you know you are setting ‘hard to reach’ goals.

But the emotion doesn’t stop there.

As I’m sure I’m not alone when I express how difficult it can be to see on paper what your child can and cannot do.

I have often expressed how much I dislike graphs which put my son in an age bracket, and how degrading it can be to score my child against other children when he has so much to battle with on a daily basis.

It is another document that highlights your child’s difficulties.

But on the flip side of that, it’s extremely positive too.

Showing what your child has achieved and goals that seem achievable.

It celebrates them and acknowledges their triumphs.

It is also the most daunting document a parent can face, and this is because of its importance.

It’s a legal document.

In my understanding, it is your child’s safety blanket, which protects them of their rights and needs.

It is a clear plan which shows everyone’s involvement, including parents/carers.

It is there to protect families, but also professionals /schools.

It is to make sure the team around each family are on the same page and working together, with the interest of the child at the centre.

Because it is legal and vital, it can scare many parents, I for one didn’t feel qualified to be such a key role in bringing this document together.

I felt overwhelmed and felt I couldn’t get it right because I lacked knowledge and expertise.

I also had no idea how important it was until I received the first draft.

There doesn’t seem to be much preparation for it, and definitely little guidance on how this document should look at final draft.

Parents are almost left in the dark until they receive the document then expected to understand and be happy with it in such a short period of time.

Don’t get me wrong there is help, but I almost feel like you’ve got to seek out that help and be aware at that time of your options.

I also feel you need confidence to speak up and discuss it.

So, if you are in a bad patch, as I like to call it, it may be difficult to have the capacity to think about this and have energy for it. As I know I’m not alone in the sleep deprived club.

For me, I’ve absolutely struggled with this whole process from get go.

And without going into too much detail, I’ve found myself feeling let down and confused.

Luckily, I have a great network of friends who have been able to guide me, but this has still come with its difficulties.

Getting the EHCP at such a difficult time in our lives, has definitely made this harder.

As I’ve been so caught up in grief, after losing my 2nd child, that I’ve been unable to find the capacity to give my all into getting the EHCP as right as possible.

I mean, where has 20 weeks gone? I fear that many others also have this struggle with the EHCP and wonder how many are left confused.

I’ll finish by saying that the EHCP is an incredible thing, and such an improvement from the where we were before. It is not meant to be hard work, but there as a positive thing for your child.

Much love, Rochelle (My Daily Miracle)

Xx

My voice echoes back to me in the chill and darkness of the valley ahead.

I feel alone, cold, worried.

Has anyone been here before?

Can anyone help?

A tap on my shoulder from a speech therapist.

A slither of hope in an otherwise wilderness.

‘Tell me about your child.’ So I do; readily, enthusiastically because, after all, it’s my specialist subject.

She hums and haws.

Will she leave me back at that cliff edge again or bring me into safety.

She offers me little really. Some visuals posted out to me to help me with my nonverbal child.

No working with the child.

No courses available at present.

Discharged.

Like a knife wound to an already injured animal.

Powerless to fight, alone, frightened.

The word echoes on in the valley. Left alone again.

A pull on my clothing. Dare I turn around? Is it possible someone else may be there?

Could this be the help I need so urgently, so desperately for my child?

‘Tell me about your child’.

With tears running down my face, my heart beating fast, the fear evident with every word I utter I tell 5rm everything like my life depends on it.

The paediatrician listens, refers on, moves on, or retires and we never seem to see her again.

It’s a fight for another appointment.

Months pass, years pass, until I realise what has happened:

Discharged.

Like they are washing their hands of my child.

Nothing more they can do, apparently.

Hope disappeared.

Back at the cliff point once again.

A whisper of my name. Hospital clinics this time.

Neurology, medical paediatricians, ENT, eye clinics…in the end we’re just a number.

In, out, maybe back again another time, maybe not.

They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’

It’s another name for do nothing and hope for the best.

Some doctors we see more than once but not many.

So much repeating of our story, so many different faces.

One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:

Discharged.

Like taking the trash out for the binmen because you have no more use for it.

Like taking your old clothes to charity hoping someone else will one day see them and think they are of value.

Either way you are no longer wanted.

Off you go please, but don’t hurry back.

Back at the cliff edge calling out for help again.

My own voice echoes back like it’s haunting me.

My child has aged, yet I am still pushing them in a wheelchair, progress is slow, my disabled child morphing slowly through the system to an almost disabled adult.

Every time I passed go my child collected another diagnosis.

Did anyone really help?

Oh, people referred on, people send out forms and ticked boxes but it never took long to be alone again.

Services started, services ended.

Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.

Reasons given ranged from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources.

Rarely was it actually due to no longer needing the service.

Discharged.

Like a slap on the face, a stab to the heart, a sinking alone feeling that your child really doesn’t matter.

I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness.

Oh, there once were a few tugs, a dull whisper, a few taps on my shoulders… but they are all long gone now.

I scream out, ‘Why, where is everyone?

Please help me!

Why did you all discharge?’

The echo comes back to me in the valley.

Discharge.

Has anyone been here too?

I used the word TEND excessively in this paragraph as it is not always the case.

What about when there is no visual aid though, what about when a person’s condition is quite complex that even the doctors are not quite sure, or not willing to diagnose?

What happens then?………. Let me tell you.

I am not a fan of “labels” or “diagnosis” but these are paramount for the healing process as a parent.

To have an actual diagnosis allows you to research and arm yourself with all the knowledge good or bad to be able to move forward with this new journey you have found yourself in.

I have a son who is diagnosed with autism spectrum disorder (ASD) and congenital stationary night blindness (CSNB).

Now apart from his glasses, both of these conditions do not offer any other visuals that you would identify why he acts in a certain way or says inappropriate things.

You would think he is a rude and maybe a disobedient child, I know you would think this, as I have heard these comments before.

Once I tell you he has autism though, your face will change and your attitude towards him will become more accepting.

Now think about this in the next situation, the only difference being that the child I am about to talk about was born six years after my own.

During this time; government changes and cuts mean he is in a state of limbo as are many other children in his situation, who are no longer being given the diagnosis they deserve and need.

My nephew Leo is different to his brother Alex and Cameron (both ASD), He’s a polar opposite in fact, and if you were to describe him – he’s a Tasmanian devil.

He wreaks havoc wherever he goes, he thrill seeks but dangerously, he is unable to remain still even in his sleep, will often harm others and pets whilst playing as he does not know his own strength, his own pain threshold is unusually tolerant, has a constant need to touch people or textiles, does not conform, cannot sit still to engage in the school environment.

He was dismissed by the professionals as being too young to diagnose or assess and now 12 months on school are trying to schedule behaviour assessments to back up their concerns and send him back through the healthcare system for the second time.

Their hands are tied because they know that without a diagnosis – they are limited in the resources then can allocate to him for support.

This is a trying time for his mum, who is doing her absolute best and trying to go forward and get the best support she can from school without the back up of a label to make this easier.

This is draining as a family where the other children are fearful of Leo and isolate him as he is just too rough, where family days out are an endurance test for everyone around and the unhelpful judgemental eyes of onlookers.

Remember though “there’s nothing officially wrong!” – there’s no diagnosis!

Most of all though, this is mentally exhausting for Leo as a four-year-old in a world that is already daunting enough, to actually not be able to have that “break” that the comfort and security a diagnosis provides.

How much he feels day-in, day-out – being told “don’t do that – stop – why!”, when we all know he cannot physically help it – it’s his condition, the one currently with no name.

We second guess ourselves, our family skills, our relationships and its draining.

We are a strong family and luckily can do this together – I’m sure many would struggle.

We live in hope and love.

Whether this is a school, club, church, sports centre etc., to be able to work more effectively with all children and young people during the times they are there, including those with additional needs, is important.

But that is really just scratching at the surface of what these organisations, and indeed all of us, could and perhaps should, be offering to families that are often experiencing daily stress.

In many ways, it’s an ‘organisation focused’ approach… “We have some children/young people/families that we struggle to support, we need some solutions to help us to do this better”.

It’s putting the needs of the organisations at the heart of the matter, rather than the needs of the children/young people themselves and the families that they come from.

And these two sets of needs may be very very different indeed!

A story from last summer really helps to illustrate this…

It was the beginning of the school summer holidays and a family that includes twin children with additional needs was facing the six-week school break with no respite care available for them at all.

Six weeks of constant 24/7 care for their two children, and the parents were finding the prospect pretty stressful and daunting!

They had tried all avenues to get some respite or support but nothing was available, or there was no budget that would pay for it.

So… they went to their local church and asked if there was any way that they could help…

Did they ask if their children could be included in Sunday School for an hour on Sunday mornings?

Or if they could bring them to the mid-week kids club?

Both of these settings are incredibly important, and to make them accessible, inclusive, and places of belonging for everyone should be a priority for every church, school, club, or similar venue, but that isn’t all that this family needed…

They needed help!

Real honest-to-goodness practical help!

Did the church turn them away?

Did the church say they didn’t have enough resources, volunteers or training?

Did the church say, “This is really a Social Services matter?”

No… they immediately saw the need, recognised that here was a family in crisis, experiencing real stress, and rolled up their sleeves ready to serve.

They took the children out on trips, they made meals for the family, some of the women took mum for a pampering session while the guys took dad out for a round of golf.

They did loads of practical things to support and serve this family.

They loved them, and by showing their love in this way it made an enormously positive impact on this family…

They were literally loved through the six-weeks of the summer holiday, and support has remained in place since, greatly easing the stress that this family experiences.

Every church, club, school etc. that has children and young people in it is going to have children and young people with additional needs, and their families, of all shapes and sizes.

Looking for ways to serve those families, both in their venues and where appropriate at the family home, is vital to families who regularly struggle, who are finding parenting a child with additional needs really stressful.

Helping families like the church in the story above did makes the headlines, but there are many other ways in which families can be helped through stressful times on a week-by-week basis.

Here are just a few suggestions:

– Don’t make a parent of a child with additional needs be the one that cares for their child in clubs, church, etc.

– Parents need a break, and they won’t get that providing 24/7 childcare.

– Look to provide one-to-one support to give these parents the opportunity to be refreshed, ready for the next challenge they will face!

– Offer childminding to parents so that they can come along to a social event etc. together.

The opportunity to just come to something is rare, so help them with this.

Over half of couples with a child with a disability say that it causes major relationship difficulties or breakups…  it’s a stressful life, so let’s also help these couples get some quality time together to invest in their relationship.

Think about holding a monthly drop in style event for parents with children with additional needs where they can come, share coffee and cake, make friendships, share stories.

Parenting a child with additional needs can be really lonely and isolating; schools, churches and clubs can help here.

Contact ‘Take 5 and Chat’ for ideas… www.take5andchat.org.uk Offer pastoral support to parents of children with additional needs.

There is so much to celebrate and enjoy in parenting a child with additional needs, but there are only so many times that you can clear up poo before you really just need to just talk to someone about the hard stuff (no pun intended…).

Maybe linking to Care for The Family’s befriending service might also be a good start? www.careforthefamily.org.uk

Recognise that many families with a child or children with additional needs struggle financially…

Much needed benefits are being cut back or withdrawn leaving families facing real financial hardship and stress.

How can schools, churches and clubs help here?

Maybe linking to Christians Against Poverty (CAP) www.capuk.org, or starting a food bank www.trusselltrust.org could offer practical help?

And don’t forget to just ask…  Among all of the practical things that can be done, and there are many, let’s not forget to just let these families know that they are not forgotten, and to ask how we all can help…

The smallest of gestures can make such a difference and mean the world to a stressed-out additional needs family!

These are just a few ideas, there are a great many other ways that schools, churches, clubs, and indeed all of us, can get alongside families with children/young people with additional needs.

If you are a school, church or club leader reading this, what will your organisations response be?

Or as an individual, what will you do?

Then let’s make a difference together…

In an ideal world, Zachariah would be able to access everything without worrying about accessibility, adaptations, and barriers.

Usually, our biggest battle is down to Zachariah being in a wheelchair and needing changing places.

However, another huge struggle is his epilepsy and the worries over triggering a seizure.

I’ve declined party invites, play dates, and trips out because of this, and disregarded holiday destinations.

And now I wonder if I’ve over thought everything and almost regret not going to a lot of the events I’ve said, “no”, too.

I mean, his epilepsy does need to be taken seriously, and there have been times when there was no option but to say, “no”.

However, I can’t help thinking that Zachariah’s missed a few opportunities that could have been enjoyed.

One activity, in particular, is bowling.

The music, the lights, the crowds.

It’s one big party and one big bag of stimulation that could trigger Zachariah’s epilepsy.

Not only this, but there’s the fact that Zachariah may not get anything out of rolling a ball into skittles.

And of course, the dreaded toileting issue, we so desperately need resolving… So why risk it?

I think sometimes I let my worry unfold that much that I lose sight of the initial worry and get lost in an unreasonable state of mind.

I had let this beat me up so badly that I had just written bowling off completely.

But like anything, things should always be reassessed.

And that’s exactly what I did over Easter. I told the husband that it was time to try something new.

Zachariah was the healthiest he had been for a long time and we needed to make the most of it.

Going bowling for the first time.

We invited his Auntie and Uncle, spoke to the bowling place about our needs and got it booked.

And what an amazing idea it was, as Zachariah had the time of his life. He smiled, he giggled and he only went and won the first game!

He absolutely loved the atmosphere and having the independence to join in. And yes, it did get too much halfway through, but having the tools to accommodate for this made it possible.

We popped on his ear defenders, pulled his hood over and let him nap.

Once refreshed, he joined in once again.

I feel so happy that this worked out, and dare I say it… I feel proud of us as a family for conquering the fear and doing something new that initially scared us.

I now look forward to going bowling again and who knows, Zachariah may get another party invite that we can say yes to!

Up next… The Cinema! Watch this space.

Much love,

Rochelle (My Daily Miracle) xx

Life with four kids was never going to be a walk in the park J I absolutely LOVE being a mama and caregiver, but that doesn’t cancel out the stress or downright difficulty of it sometimes…

Since January 2018 in our house, we’d had repeated seizures and hospital admissions and appointments relating to epilepsy, a case of influenza A, a broken arm, three children’s birthdays, a severe mystery rash requiring hospitalisation with IV antibiotics – amongst all the usual busyness of everyday life with four children, the youngest with many additional needs.

I’ve had to cancel two separate trips!

The disappointment of not being able to make a flight to see your dear friends – one in Canada who is very sick, and one in London with a new baby, was unbelievable.

But staying home to look after your ill child takes priority. Sometimes it seems like déjà vu – or the ‘story of my life’.

Many tears were shed feeling sorry for myself and situation.

It’s a really helpless feeling when you’re stuck in a hospital, you know your daughter will be OK once the medicine kicks in and give it a few days, but in the mean time you’re missing your flight today.

I’m so thankful to report that all four girls are currently in good health!

PHEW!

I got to reschedule the London trip with my beautiful teen and had some wonderful times together! And I am finally taking the trip to Canada and the States next week!

When I got the girls back to school after Easter break this week, I set right off to finding some balance in my life between being a mother, housewife and caregiver.

I booked in to get my eyebrows done, have a lovely breakie out with my friend, and today I enjoyed an HOUR-LONG facial!

Thank goodness for some quiet hours while they are at school!

I think I would go insane if I didn’t get the break…

We all KNOW how important it is to set apart some ‘me-time’- it’s just a matter of doing it, isn’t it!

Please-  do look after yourself, or you’ll be too burned-out to be a good parent and caregiver to your little one!

Don’t ever feel guilty for spending time or money to get away from the everyday stresses in your life.

You do deserve it x

Anthony had never known life without Smithy, our beagle. It’s been over two years since our dog past away, aged 10.

But the truth is he’s had a lasting impact on our family and particularly our autistic son Anthony.

They grew up together and Anthony will sometimes still miss him.  Because despite what some may think, an autistic boy can be very emotional.

Here’s some of the ways that Smithy helped Anthony:

Rough and tumble

Anthony has a great need to sensory feedback and feeling of being pulled, squashed and pushed make him feel balanced.

Sometimes we’d find him buried under our dog on the sofa others he’d play tug of war or be jumped over.

Smithy would encourage him out into the garden and help him move about and practice those (not-so-fab) gross motor skills.

Communication

Smithy may not have been able to talk (obviously) but this let Anthony consider how else he was communicating.He learned what is meant when Smithy stood by the back door, looked sad or knew when he wanted to play.

Anthony would ask Smithy questions and figure out the answer through smithy’s responses. This was all great for Anthony interpreting communication from others and something he could develop without the fear of getting it wrong with his peers.

Emotional well-being

Maybe the best one of them all.Anthony really loved Smithy.

There was absolutely no doubt about it. And he felt loved in return.

They’d both be delighted if somehow Smithy managed to sneak into Anthony’s bed after lights out.

Anthony learned how to express his emotions and how to connect with another living being, by connecting with Smithy.

And when Smithy passed on, Anthony dealt with the loss with emotions and bravery in a way would never thought possible.

Man’s best friend? More like, ‘Boy’s best friend’, really.

There is no time and a place for memories; sometimes they just flood your mind when you least expect it.

They come when we don’t want them and they refuse to show up when we try hard to summon them, eh?

I live in a world where memories especially good ones can cause me to spiral into a world of anxiety, panic, fear…; I have memories of my son, who is still very much with me but my memories involve a different child; it almost feels like I am remembering a movie rather than my son and I many years ago.

Today a bright funny memory came rushing into my mind as I placed my four-year old’s bottom on the step of the stairs.

I smiled.

I, for a long time have pushed these wonderful memories of my son out of my mind as they are painful but yet they are so wonderful.

I am currently doing a mindfulness course; and I am learning to sit with the memories of a boy that is no longer here but yet very much here.

It is a balancing act. I believe it’s been written about many, many times – how do you grieve a child that is still here? – I don’t think you can.

I think you just learn to be with them and recall memories which in time will bring happiness to you.

Mindfulness has helped me do this; don’t get me wrong, it’s been really difficult and still is, but I am trying hard to recall the wonderful memories I spent years blocking out.

Back to today.

I placed my four-year-old on the last step of the stairs for crimes against my windowsill (again).

He sat quietly while I told him off.

He once again tried to explain that the markers did it and that it was just his hand holding the marker, so therefore it wasn’t all his fault.

I left him there.

I smiled as I sat on the arm of the chair. He is a funny little man I thought then it came flooding back.

I could feel the hurt and my heart beat faster but I choose to feel it and let that memory come in.

“What did you just do to your brother?” I was shocked at the state of my then one year old. He was covered in sudocream and marker. He began to cry as he mashed the sudocream into his hair.

I had no idea how to clean him.

“Nothing” came the reply from my then three and half year old.

“Don’t you lie to me, Ethan!” I pointed my index finger at him while he looked at the floor.

From behind his back, he pulled out the empty sudocream tub. Slowly he handed it to me. Then without a word he walked out to the stairs and sat on the step.

I followed. I did find it funny that the poor kid was so used to getting into trouble that he knew exactly what was going to happen.

Of course, if I had known then what I know now, I would have probably brought him his own Sudocream and let him destroy a doll or two.

“You’ll stay there for…”

He cut me off …” I know minutes. I am so so sworry mammy. I weally am, this time. Here”

He pulled out a black marker from his pocket.

I took the marker and told him “Three minutes Ethan. That was really naughty”

It’s not easy to clean sudocream off a wriggling one year old, but I did it.

That very same day, Ethan and his brother were playing with cars when I caught Ethan with a car up in the air, poised and aimed at his little brother’s head.

“If you throw that Ethan, you will get in big trouble” I warned him.

He looked at me, then at his brother and back at me.

He let the car down. I really thought that we had a breakthrough with this consequence for actions dance w head been doing for years, when he picked up a juplo Lego brick instead and threw it straight at his brother’s head while laughing.

He turned to me and said “I know, I know, stairs ….” And he placed his three-and-a-half-year-old bottom on the last step of the stairs.

“Is my time up mammy?” My current four-year-old brought me back to the present.

I wiped my eyes, I smiled.

“It is, little man, come here and I tell you a story about how funny your big brother Ethan was at your age”.

Memories are beautiful and learning to embrace them is hard work but work I am willing to do.