Purple Day

Epilepsy Awareness Day, or ‘Purple Day’, is on the 26th March, and this will be the first ‘Purple Day’ since James, our 15-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a year, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.

But let’s start at the beginning, mid-March about a year ago, when something “unusual” happened with James at school…

I remember the phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home.

In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher calling me said.

“It’s like he totally zoned out for about 30 seconds, his eyes were open but there was no response. Like the lights were on but no-one was at home, then all of a sudden he was back with us again.  He seems fine now.”

They kept an eye on James for the rest of the afternoon, he seemed fine and travelled home on the school mini-bus quite happily.

There were no further episodes, so all was put down to James just “having a moment” and quickly forgotten…

We now know that what James actually experienced was an ‘absence seizure’, sometimes called a, ‘petit mal’, seizure, a form of epileptic event, but more of that later…

Time passed, summer came and went (all too rapidly!), and autumn arrived.

One mid-October morning, we had helped James get up and get dressed; he was chilling out in his den while I went to the kitchen to get him some toast and a drink.

When I returned just 2-3 minutes later I found James having a full tonic-clonic epileptic seizure, sometimes called a ‘grand mal’ seizure.

The sort of seizure someone who knows little to nothing about Epilepsy (which was us) thinks of as an ‘epileptic fit’.

He was lying down, rigid, jerking, losing consciousness and dribbling.

It was probably the most frightening experience of my life, I am so thankful that James remembers none of it.

The paramedics were there within minutes, while a very kind 999 operator helped me to keep calm and gave me things to check and do to make sure James was breathing properly, that he was safe from banging his head, and that I didn’t pass out too.

James came round again within a few minutes, and although he then slept for much of the rest of the day, he recovered fully.

We were then on the journey to find out what had happened, and why…

It turns out that Autistic children are much more likely to develop Epilepsy than their non-Autistic peers, with studies showing up to 30% of Autistic children also develop Epilepsy.

Two key times when this can occur is in the pre-school age (James missed that one), and in adolescence (James got caught then).

In talking all of this through with James’ Neurology Consultant, it became clear that James’ absence seizure in school, as we only then understood that it was, was linked and perhaps his first epileptic episode.

We also discovered that when James occasionally ‘jerks’ or ‘twitches’, it’s not him just shuddering or shivering, it’s a ‘myoclonic jerk’, another form of epileptic event.

We’re still novices in this area, but we’re learning fast!

So this ‘Purple Day’, have a think about your child or adolescent…

Are they Autistic?

If so, they are up to 30 times more likely to develop Epilepsy too.

Have they ever zoned out, gone blank for a few seconds?

Do they sometimes twitch or jerk without reason?

Understanding these signs and seeking better awareness and knowledge of Epilepsy will help you and your child.

Seek professional medical opinion if you are at all concerned, but don’t ignore any signs – the unexpected sight of your child having a full tonic-clonic ‘grand-mal’ seizure for the first time isn’t one you’ll forget in a hurry…

Let this ‘Purple Day’ be an epilepsy awareness day for you.

The Impossible

My daughter’s wonderful Special Education teacher shared this powerful quote with me recently, and it has remained close to my heart.

She had printed these beautiful words for me along with a priceless photo of my daughter, Ryleigh, and her classmate.

They were holding hands and STANDING at a table together.

It was such a mighty photo of two mighty little girls.

Standing is indeed a big deal, and was once thought to be an impossible feat for Ryleigh.

In her seven years, my daughter has achieved the impossible, again and again.

She has accomplished impossible victories.

From her very first breath, she conquered, “impossible.”

Having been told that breathing on her own and surviving outside of the womb were unlikely, we recognized a mighty fighter before us, on the day she was born.

As a baby, we wondered if crawling was a goal far out of reach for her.

We watched her struggle to pull herself up onto all fours time and again.

At two years old, after a year of physical therapy sessions and diligent work on her part, it happened!

Out of nowhere, she took off across the floor in a mighty determined crawl!

When she wasn’t chewing or tolerating textures at three years old, we worried that we had missed the vital window of time to master that skill.

Feeding therapy, a brushing program, facial massage…you name it, we tried it; to no avail.

At six years old, we watched in sheer amazement as she ate birthday cake, green beans and many other non-pureed foods, for the first time.

At age four, we were told that statistics were not on our side.

Statistically, if a child of four years hasn’t learned to walk, the chances of success are highly unlikely.

At seven years old, we witnessed her take independent steps for the very first time, holding onto a gait trainer.

Shortly after that, she walked the hallway at school, holding onto only her teacher’s hands.

We watched statistics crumble before our tear-filled eyes, and we saw an astonishing sense of independence blossom!

There’s a song lyric that speaks volumes to me about achieving the impossible.

“I’ll climb the hill in my own way…just wait a while for the right day.”

Our girl has a fierce spirit and a courageous heart.

We know now that she’ll do things in her own way; in her own time.

Watching her reach milestones that we once ached for, fearing them to be impossible, has been a breathtakingly beautiful experience.

As she continues to attain the impossible, she proves more every day that she is MIGHTY.

US Parents Need The GoTo Shop

Do you ever struggle to go grocery shopping with your children?

You’ve been telling us how this can be a near impossible task for a while now – and we’re pleased to say we have the solution:

The Firefly GoTo Shop Cart which has transformed shopping trips for special needs families in over 3,500 UK stores, is now available for distribution in the US, Europe, Australia and Canada.

We have a strong community at Firefly and parents are continuously sharing the challenges they face with everyday tasks like grocery shopping.

It is the simple products, that improve day-to-day life, which are the most effective.

The importance of the Firefly GoTo Shop Cart cannot be underestimated.

GoTo Shop Cart has been designed to make shopping trips easier for parents and carers of young children with disabilities.

The shopping cart seat includes a secure and adjustable 5-point harness, adjustable head and lateral support, a soft padded seat and an open front for easy transfer.

Parents who have used the cart in the UK have commented on the social benefits of the face-to-face interaction they get with their child.

Today we’re calling on our US families to get behind the campaign by downloading the US Campaign Leaflet and handing it in to your local stores to make store managers aware that the GoTo Shop Cart is now available in the United States.

Download the leaflet here.

Anything you can further do to increase campaign awareness will be a massive step in helping get the GoTo Shop Cart in stores across America.

Don’t forget to use the #EverySupermarket if you are posting about the campaign on social media.

Here’s some other ideas:

– Take a photo with the store manager when you hand the leaflet in

– Contact your local newspaper or TV stations to tell them why you need a GoTo Shop in your local store – ask the community to rally around and support you.

– Start a petition in your local store and ask the community to sign and support your cause.

Let us know your progress – we’re asking for your help, so you can bet we’ll be there to help you with your efforts!

If you require more information, assistance or if you want to let us know your progress feel free to contact Mark at [email protected]

Disability and Brexit

As Ben Elton used to say… “Ooh, a little bit of politics there!” so buckle up for my current take on where we’re at with disability and Brexit…

On the 23rd June 2016, the population of the United Kingdom voted in the EU referendum to answer the following question:

“Should the United Kingdom remain a member of the European Union or leave the European Union?”

The result was that 52% voted ‘leave’, while 48% voted ‘remain’.

Brexit became the word of the year, and the Government started negotiations for the UK to leave the EU.

Those negotiations continue, and legislation is working its way through Parliament, with the EU Repeal Bill among one of the latest examples of this.

The news is still filled with Theresa May and David Davis offering the UK Government view, while Michel Barnier, representing the European Union offering an often starkly different perspective.

Even the announcement of some agreement on the transition phase, on 19th March 2018, contained a number of key issues still to be resolved.

But what does all of this mean for those living in the UK with additional needs or disabilities, or their families?

How will this sector of the UK population continue to be affected by Brexit?

This blog post explores some of the key areas, not to open up Brexit divisions further (if that is possible!), but to provide some insight into the implications of Brexit, for better or worse, for children and young people with additional needs or disabilities, and their families.

It will explore these implications under three broad headings, ‘Disability rights’, ‘Travel’, and ‘Funding’.

Many of these are linked to progressive social policies that flow across several or all of these areas, but we will focus on where it is most appropriate.

This blog post doesn’t set out to be exhaustive, but to provide a starting point for continued debate and individual research, as well as raising awareness about this important but perhaps often overlooked area.

Disability rights:

The United Kingdom has been a full member of the European Union for decades, and as a result the UK’s legal framework has become ever more closely linked to that of the EU.

Legislature that has been introduced by the EU has been adopted by default within the UK.

There is a raft of EU legislature that has relevance to disability rights, with the following list being just a starting point:

Equality Law

EU Parking Badge (allowing disabled people to use disabled parking places across the EU)

Braille labelling on medicines

Access to benefits while living in other EU countries (see under ‘travel’)

EU Air Passengers Regulations 2006

Access to the European Court of Justice (note: this is different to the European Court of Human Rights – see later in this article)

The EU has made it illegal to discriminate against someone because of their disability, or because of their relationship to a disabled person (important for parents of a disabled child for example).

Many of the hard-won rights that have been provided through membership of the EU are rights that exist and are harmonised across the whole of the EU.

While the ongoing Brexit negotiations may well retain some of these rights, there is no guarantee, and the UK will not benefit from future developments and innovations in these rights.

In December 2015 the EU proposed the European Accessibility Act, which aims to improve the functioning of the internal market for accessible products and services for people with disabilities, by removing barriers created by divergent legislation.

As the UK is leaving the EU it will not be bound by this Act.

UK citizens currently have recourse to the European Court of Human Rights (ECHR), which over the years have strengthened disability rights.

While the ECHR sits outside of the main EU courts, and so Brexit doesn’t detach the UK from its protection straight away, the current Government has been a very vocal critic of the ECHR, with the most recent Conservative Party election manifesto stating that they would ‘consider our human rights legal framework when the process of leaving the EU concludes’ (page 39).

This could be read that both repeal of the Human Rights Act 1998 and withdrawal from the ECHR remain very much on the medium-term agenda, and are less complicated after Brexit.

Such a withdrawal could weaken the legal protection offered to disabled people and make bringing human rights claims against the UK Government much harder.


Current Brexit negotiations include what kind of border controls and freedom of movement will be in place once the UK leaves the EU.

‘Hard’ border controls could mean delays and access issues travelling to/across Europe, including the Republic of Ireland.

People with disabilities or reduced mobility enjoy specific rights and protection under European passenger rights legislation, including the EU Air Passengers Regulations 2006, at the airport and during air travel throughout the EU.

It is unclear at this stage whether these protections will continue after the UK leaves the EU.

The European Health Insurance Card (EHIC) provides the right to access state-provided healthcare during a temporary stay in another European Economic Area (EEA) country, or Switzerland.

The EHIC covers treatment that is medically necessary until the persons planned return home.

It currently works both for UK citizens travelling or resident in Europe and other EU citizens travelling or resident in the UK.

At present, the negotiating position seems to be that this will continue for those in-country when the UK leaves, but there is no agreement for new post-Brexit visitors.

Currently UK citizens enjoy access to benefits, including disability benefits such as PIP, while living in other EU countries.

It is unclear at this stage whether these rights will continue after the UK leaves.

When considering EU nationals currently residing in the UK, many are employed in the NHS, care homes, and other places that people with disability or additional needs, or their families, disproportionately access.

Due to uncertainty about a post-Brexit future, and the lower exchange rate, many are returning to their country of origin which could result in staffing challenges ahead.


There are a wide range of EU funds, many of which are to some extent focused on social inclusion, poverty reduction, and other areas where people with disability or additional needs have benefitted disproportionately over the years, including some of the funds shown below.

European Social Fund

European Regional Development Fund


European research funding for Universities

The EU has, for example, provided funding to improve accessibility to social amenities and tourism for disabled people, disability friendly children’s play areas, and much more.

Once again it is unclear whether the UK will be entitled to benefit from these funds having left the EU, or whether they will be replaced with a UK based equivalent.

A continued post-Brexit downturn in the GDP of the UK will make this harder to budget for, and indeed proposals in last years’ Conservative Party election manifesto, and their actions since, suggest that further welfare cuts are more likely.

National Star has just been awarded Erasmus+ funding for a programme on assisted technology for people with disabilities at work, with partners from Croatia, Greece and Finland.

However, after the UK leaves the EU, organisations based in the UK will be able to partner but not lead Erasmus+ programmes.

This means that UK organisations will not be able to take the initiative or shape the way projects run, and will instead be subservient to the interests and needs of other European partners.

(Quoted from The Guardian, 14-08-17)

In conclusion, while the decision for the UK to leave the EU has been made, and there is some agreement about the transition phase starting in March 2019, there are significant implications to consider for everyone with additional needs or disability, and their families, whether children, young people or adults.

It is important that awareness of these implications is increased while there is still time to bring pressure to bear on those making further decisions on all of our behalf for the future…

What “Purple Day” Means To Me

This international day of Epilepsy awareness was started by a nine year old girl, Cassidy Megan, in 2008.

As a catalyst to encourage dialogue about the disorder, and to spread hope to others, this movement began and has vastly spread worldwide.

When my daughter, Ryleigh, was ten months old, I witnessed the first of many gut-wrenching seizures.

You NEVER forget the first time you experience the heartbreaking glimpse into the face of this disorder.

Life is forever changed.

Nothing is ever the same again, and the constant fear and worry of it happening again, at any moment, is always there nagging at you.

As many times as I’ve watched helplessly as she endures seizures, the experience never truly gets easier.

Over the past seven years, I’ve learned to act quickly, roll her to her side, watch her closely, time the event, and administer oxygen….all while time stands still.

I typically don’t fall apart anymore now until after it’s all over… until I’m holding her safely in my arms…until her body is still and she’s taking normal breaths again.

Parents shouldn’t have to live in fear of losing a child to Epilepsy.

Individuals with Epilepsy shouldn’t have to rely on harsh medications that often have detrimental side effects on their minds and bodies.

As parents fed up with the side effects of our daughter’s anti-epileptic medication, my husband and I have diligently and desperately sought other ways.

At a crossroads of being maxed out on her seizure medicine and the recommendation of adding a second one, we knew something had to change.

We were seeing horrible side effects, all the while, she was still having seizures.

Thus, we began the discussion of Cannabidiol oil (CBD) with our Neurologist for our daughter.

This discussion of treatment options needs to spread worldwide.

After one year of being on CBD oil, and having her seizure medication slowly weaned down to a much more tolerable dosage, our family has HOPE.

We’ve seen a “brain fog” lifted, cognition dramatically increased, anxiety melted away, and the frequency of her seizures lowered.

There is so much more research needed; there is so much work to be done.

Laws need to be changed so that every epileptic patient has access to safer, natural medication.

Lives need to be saved; quality of life needs to be improved.

Why does the world need Epilepsy Awareness?

So that the world can understand the effects that this menacing disorder has on individuals and their families.

Why do we wear purple on March 26, and urge others to do so as well?

To stand together in SUPPORT of those worldwide who are affected.

Join me on March 26 by wearing purple for PURPLE DAY. Let’s keep the discussion going about Epilepsy and continue to raise awareness together.

Finding His, “Thing”.

Usually we find it when we are a little older, like middle school/high school.

It is usually our ‘thing’.

Soccer, baseball, football, painting, instruments, etc.

It is that one thing that we are good at, or simply have such a passion for and enjoy doing it.

My step-son Aaden, has found his and it is baseball.

He is such a great athlete, but he is exceptionally well at baseball and loves the sport.

My Oliver is approaching four years of age, and I am dying to find something he can consider to be his go-to thing.

In our area, we have a non-profit group called No Limitations, which hold sporting seasons for kids with disabilities; such as football, cheerleading, and soccer.

Oliver has enjoyed football and soccer, but is still timid when playing.

Lately he has started tumbling on his head and around the house, full of joy.

That is when it hit me one night…

Why not look in to putting him in gymnastics?

He has such superb upper body strength from therapy that I believe he would excel in some areas of gymnastics.

Luckily, through recommendations, we found one facility that is actually run by a physical therapist who has had experience working with children with physical disabilities.

Upon talking with her, she even agreed that gymnastics would be an awesome way for Oliver to work on certain muscles like he does in therapy, but with other kiddos his age.

We have scheduled our first trial class for the 12th of March, and are so excited to see how he does!

Oliver is beyond excited, after showing him the tricks and tumbles other children have done on the mats and swinging on the bars.

Oliver also starts baseball with another league that includes children with disabilities in sports play.

It may or may not be his thing, but we hope to provide enough options for him to be able to test and pick one for himself.

We never envisioned so many options available for him, being in a wheelchair, and are excited to take him down every and any avenue we can!


The others:

“COME on!”

“I said NO!”

“I’m the Mummy.”

These are not the subject of this mini rant, although, some days I don’t honestly feel I say anything else.

As a parent, one of the first things you teach your children is how to share (or ‘play nicely’-which basically means ‘let her have it and don’t bite her when she takes it).

It’s difficult, counterintuitive and no one much likes it, but it eases the way into school and working life and it has to be done.

By the age of about three most children understand what you mean by sharing and they try their little best.


This seems to me to be all the more extraordinary when you realise that professionals, all of whom are above three, are apparently incapable of sharing anything.

“But” I hear you cry, “what about patient confidentiality and data protection – not to mention safeguarding?”

These are vital things, professionals are important people they must protect us all”.

In the olden days when I was a Speech and Language Therapist a thing called the, “multidisciplinary team” existed.

Meetings happened between all the professionals involved in a person’s care.

Patients were discussed, and staff liaised.

This still happens in hospitals, but in the community is much rarer.

This has a knock on effect for parents of children with multiple needs.

Firstly you have to go through the entire back story of your child when you meet a new professional, knowing that somewhere in the system (perhaps several somewheres) it is already documented.

Secondly and most frustratingly it means that the parent can end up doing all the liaising.

Pearl has school in one county (budget one) Orthopedics in another (budget two) and we live in another, which is responsible for paying for splints and equipment.

This has led to situations where the Physio responsible for splints, is angry with the decision made by Orthopedic Surgeons and takes it out on me.

“Why does Mr Tightcalf want to do that, did you explain to him what we’re trying to achieve?”

Well no, because after I have had all your ideas explained to me and I’ve left the office, I forget them all, because I am not a Physio, or an Orthopedic surgeon.


(Can I just point out that sadly that isn’t Pearl’s Orthopedic Surgeons name ,and disappointingly I am not that assertive in a conflict situation, choosing instead to go home and weep quietly.)

So, what can be done and who can we blame?

Personally, I blame the Government (I usually do tbh).

Services are terribly over stretched at the moment, faces through doors are a measure of success, and due to austerity and low morale there is a shortage of Therapists and Professions Allied to Medicine.

Non-face to face contact is low on the priority list.

What would I change if I was in charge?

(Oh SO many things)

Basically I think we need a long term shake up rather than a short term shuffle.

Multidisciplinary Teams are a great way to work, team work is satisfying, the client gets a coordinated approach with a single goal.

This should lead to better swifter outcomes, and the patient can be include in goal setting too!

More money in the service would of course lead to less firefighting, but also should save money in the long term.

Every half hour taken redocumenting the same information costs somebody money, and that somebody in the end is the tax payer.

That’s us!

So come on service providers, let’s have some creative thinking in planning services, everyone would benefit.

Didn’t your Mummy ever tell you it’s nice to share?

What Our Dog Could Teach Some Professionals

She was planned.

She was, in fact years in the planning.

Adding her to our unique family wasn’t something we decided on lightly.

We had looked at all different types of breeds.

A big dog, we felt would be too much for our son Ethan, as he is quite small in stature.

We meet her and instantly fell in love with her.

A Jack Russell cross, we were introduced to her mother and brother.

They were both as friendly and placid as her.

We decided ‘Lola’ belonged in our family.

Lola loves our boys, all three of them.

For months now, she has been working on trying to get Ethan to love on her without any luck.

She has tried everything from jumping all over him to sneaking into his space hoping he doesn’t catch her.

Ethan doesn’t really care much for people or dogs who come right up into his space without warning.

We have explained this over and over to professionals who wish to examine him.

“You can’t just go straight in, you need to take your time and even ignore Ethan a little”, my husband would try to explain to the doctors who needed something as simple as a blood pressure reading from him.

“If you ignore Ethan, he will eventually come to you.

That could take less than two minutes or up to five”, D would add as the doctor would glance at their watch.

It’s very true.

Ethan likes his space.

If you want Ethan to interact with you or you need him to put on a pressure cup, (for example) you need to ignore him while fiddling with the cup.

Ethan will, on his own terms come over to you and see what it is that you have.

You can then show him and he more than likely will let you; it’s not an exact science but nothing ever is with our Ethan.

Professionals often don’t listen.

Professionals are understandably under pressure for time but sometimes taking that extra ten minutes with one patient can save everyone a huge amount of stress, especially Ethan.

For years we have tried to explain this and for years we haven’t been very successful until ‘Lola’ came into our home.

‘Lola’ discovered pretty quickly that if she wanted Ethan’s attention that she actually didn’t have to work for it; all she had to do was ignore him a little and let him come to her.

It’s now March.

We’ve watched ‘Lola’ and Ethan closely. Three months ‘Lola’ has been trying to get his attention. Three months she has been begging for a pet, a cuddle or even just a look.

She’s a patient little dog.

Ethan slowly began to acknowledge that she was in the room by laughing and pointing at her. She would sit and wag her tail but dare not move any closer to him.

Then he allowed her to sit on the foot rest of his ‘Comfy’ seat ; which I can tell you was a huge deal in our house as Ethan won’t let anyone near his ‘Comfy’ seat.

Yesterday she crawled onto my lap. She wiggled her way across my lap and onto Ethans.

Ethan was engrossed in ‘Shrek’ at the time and didn’t notice the small white fur ball cuddling into him.

Suddenly Ethan looked down and could see ‘Lola’ laying across the iPad and on his lap.

I was on high alert as Ethan could have easily presumed the dog was a teddy and tried to throw her.

Which sounds funny, I know, but it isn’t funny when there’s a real possibility of that happening.

He slowly lifted up his hand and firmly placed it on her head.

I could feel her tail wag.

He moved his curled fingers along her brown spotty ears and began to stroke them.

She closed her eyes while I let out a sigh; finally Ethan and ‘Lola’ were buddies.

Today she sat waiting for any form of acknowledgement from her buddy and was greeted with a point of his curled finger. She was happy with that as she followed him to his seat and sat at the foot of it.

I think not only professionals in the field of special needs could learn a lot from a dog like ‘Lola’ but I think we all could.

Good things, do indeed come to those who wait.

Medicine – A Job in Itself

It is a subject that I find gives such a varied range of experiences and responses and it just shows what a complex and individual issue it can be.

Recently, medicine has crept its way to the top of our, “list of concerns”.

Every time we start a new medication I begin with trepidation, monitoring each and every one of my daughters sounds, movements, habits and behaviours.

I spend so much time trying to read her and agonising over whether or not we are making the right decision in pursuing certain medications.

“This medicine was the worst thing ever for my child… it hospitalised him” to “this was the miracle medication for us… she is so much more comfortable, less irritable, I wish we had heard of it sooner”… two different responses to the same medication.

You can see why our heads are spinning.

It’s a huge responsibility for a parent to monitor and make decisions on medicines.

Especially if those medicines affect brain function, movement and so on.

For parents of non-verbal children, or children with communication challenges, it isn’t a game of cause and effect or being able to ask if the child is feeling okay.

Amy generally communicates with various sounds and I’d like to think I am good at translating whether she is happy, or not happy.

The problem I find is that when she isn’t happy she has no way of telling me why.

The most disheartening for us is when we start a new medication and build up too much hope only for either nothing to change, or for things to somehow get worse.

I don’t like relying on medicines but it seems inevitable for us.

I know from personal experience that starting any medication can have many different side effects.

I am on my third different type of tablets to help with my anxiety.

The first one caused me insomnia, headaches and bruxism (tooth grinding/jaw clenching).

The second one caused me to feel detached and emotionless, but also caused nightmares and night sweats.

So how do we know that one of Amy’s many medicines isn’t causing her a banging headache or any other symptom?

You see she recently started a medicine to help ease her athetoid (involuntary) movements.

We have noticed that during the day she seems to have better control of her arms and therefore improved gross motor skills.

We are increasing the dose incrementally each week until we reach the top dose for her weight.

The downside?

She has stopped sleeping.

And by stopped sleeping I am talking full on all-nighters!

We thought she had sleep issues before but they look like a dream compared to what we have encountered in the last couple of weeks!

The solution to this insomnia?

You guessed it.

Another medicine to counteract the negative side effects of the first!

So valium/diazepam is back on our list.

We’ve had this before with a medicine that was prescribed to stop her being sick… but because it was a pro-kinetic she wasn’t stopping her “explosions”.

So, we were of course given a medicine to “constipate” her.

I spend my days obsessing over every nappy, how much food she has had and what calories she has taken in.

My mind is now at rest on this subject however I do worry about the long-term effects of anti-reflux medication.

Every day we draw up a minimum of 15 syringes of medicine a long with flushes for each set.

I’ve seen people struggle on less, and I’ve seen people wish they only had to draw up 15 a day.

In itself I feel medicine for our children could be at least a part time job… the ordering of prescriptions, the collections, the checking stock levels for syringes/feeding supplies, finding somewhere to store it all, and my least favourite?

Making sure the labels are correct!

The labels for respite and nursery need to state correct doses and legibly display the child’s details.

I’ve had so many days where I’ve been asking the paediatrician to urgently fax our GP to then contact the pharmacy to make them aware of a new dose and if this doesn’t get done it would affect Amy being able to attend an overnight at respite.

The struggle is real!

I had this exact problem a couple of days ago and I became so exasperated that after various phone calls to different people I burst out crying… it was at this point that someone said “leave it with me”.

The four words that can mean either “I promise I will fix this”… OR “I will leave you waiting an eternity, not return calls and leave you in the lurch getting more and more angry and frustrated”.

Luckily for me, I was helped – this time!

I know a few parents who have taken a more homeopathic or herbal approach to their child’s health with some success.

I marvel at them as I find myself having a mistrust in these things as they can cost a lot to try the different techniques and only provide limited success.

I wonder should I be spending more time researching alternatives to medicine but then become overwhelmed at the wealth of information out there, and I am conscious that this time is probably better spent doing her daily physio or SALT work.

To people not part of our cerebral palsy world… when they see which medications Amy is on they are staggered.

How can such a small person require such a huge intake of drugs?

I explain each one and why she has it, and I can see the person understand… yep… that makes sense… muscle relaxants, help with neuro irritability, help with reflux, and so on.

It has become so much part of our life that it is normal, but I know to an outsider how alarming it must look, I often joke that our kitchen alone could open up as a pharmacy to all.

Creams for granulation, inhalers, tins, tubs, bottles – it really is next level.

When you take into consideration the multi-faceted nature of special needs parenting, it is incredible how much we can achieve with our time.

This month alone has been so incredibly busy with equipment: sourcing a safer bed for Amy, wheelchair services, new school chair, standing frame adjustments, sleep system gear and new additions to it, and so on.

Regardless of your stance on medication, I know in my heart that I am doing my absolute best for Amy with limited experience and on an empty tank.

We are all doing our best for our children and even though sometimes you beat yourself up and second guess yourself, you know that one day you will get the balance and hopefully have them as settled and comfortable as possible.