To Daddy, love Sam

You’re always there.

You stand with her, whether we’re at home or in hospital.

You try not to look worried when I’m poorly and I know it’s difficult for you to leave us in hospital when you go and collect my wheelchair because the ambulance couldn’t carry it.

You know all my meds by name and their doses, even the doctors look impressed as you reel off the list!

You know when my meal times are, and what to ask Mummy to order from the pharmacy.

I giggle when the doctors ask you and Mummy to tell them all about me….

From the beginning, they say, as you chuckle and hand the floor over to Mummy!

I know it drives you bonkers when I won’t settle in my own bed and am demanding to go into your bed; I’m sorry that it hurts your back to lift me, but please know how grateful I am that you still do it despite the pain.

And no-one else plays with Lego as well as you and I do – we’ve made some awesome things (and I can’t help noticing that there are a lot of other kits we still have to do).

Thank you for making bath times fun by splashing and being silly, soon we’ll have a new bath that will mean you don’t have to bend all the time to lift me – then I can REALLY splash you back.

I get cross when people don’t ask how you are, they always ask how Mummy is and how I am, but they forget to ask YOU.

And you do so much for me, Mummy says that not everyone is as lucky as I am having a Daddy that does so much and who loves me as much as you do.

I’ll let you in on a secret, Mummy thinks you’re pretty awesome too.

She says you sacrificed working to be able to care for me, so she could carry on doing the job she loves.

That sounds like a pretty big deal to me Daddy, but you never mention it…

I’m sure Mummy won’t mind if I tell you that it is a big deal, and that it changed our lives for the better even though it meant you had to give up something you’d done for so long.

Mummy says she couldn’t do all she does without you next to her; I know I couldn’t either.

You are my hero.

Happy Father’s Day Daddy,

Love Sam x

Swimming Lesson Dilemma

It strikes me that it would be a good form of exercise for him, bearing in mind his hypermobility, as his weight would be supported by the water, so there would be less strain on his joints.

It’s also a fun and relaxing pastime, and, last but most certainly not least, it’s a very important life skill.

But when it came to booking swimming lessons for him, I faced a dilemma.

Should I enrol him in an ordinary, public swimming class alongside other, typically-developing children, or look for something more specialised?

There is lots of evidence to show that children with Down’s Syndrome do best when educated alongside their typically-developing peers.

With appropriate support many young people with Down’s Syndrome do indeed thrive in mainstream education, and in mainstream extra-curricular activities.

It’s what all parents aspire to for their children – that they will hold their own in ordinary life. In many support groups (particularly online ones) there’s even a certain amount of snobbery about it: any parent who even considers a specialist school or any activity aimed primarily at disabled children can find themselves implicitly accused of underestimating their child, or of letting them down, or not wanting the best for them.

Actually, it’s worse than snobbery, it’s a form of unconscious, unthinking, ableism.

Who exactly have these parents let down – their child, or ‘the side’?

It almost seems that some people, in the desire to make Down’s Syndrome acceptable to the ‘typical’ world, seek to deny the existence of anyone who doesn’t fit the image of DS they wish to portray.

We all want to see acceptance, but that acceptance will be meaningless if it does not include everyone, regardless of ability, or how close they can come to being like ‘typical’ people.

We will never change the way society views disabled people if we simply pander to existing ideas of how people ‘should be’.

In an ideal world, of course, mainstream life and education would accept and include everyone, and cater for their needs.

But we don’t live in an ideal world, and real-world mainstream life, with its one-size-to-fit-the-majority organization, is inaccessible or overwhelming for some.

Even with support, some people will struggle to reach their full potential if ‘mainstream’ is the only option.

But I digress (and I’m ranting again).

We didn’t take Freddie to the pool as a baby or toddler.

When he was born he had something called Transient Abnormal Myelopoesis – a rare sub-type of Acute Myeloid Leukaemia, fortunately usually self-limiting.

Oncologists aren’t big fans of public swimming pools for obvious reasons, so we were advised it would be best not to take him.

The condition resolved, thankfully, but he was school-age before we felt confident enough in his health to consider swimming lessons.

This meant that Freddie would have to start in a class of children all much younger than himself.

I didn’t think this would be a good thing for either his dignity or his self-esteem.

And I wasn’t convinced that an ordinary swimming class would be able to meet his needs.

I was afraid he might not get very much out of it. He might not even be safe.

Freddie undeniably has cognitive and physical developmental delays.

This is not me underestimating him, or believing the stereotype.

This me knowing my son and accepting him as he is.

He also has a very limited attention span, and is easily distracted – I’m not suggesting that is true of all people with Down’s Syndrome, because it isn’t, but it is true of Freddie the individual.

How would a conventional swimming class, with a group of children all requiring tuition and supervision, and the teacher standing on the side shouting instructions, work for him?

How would the instructor keep his attention?

Would he or she be able to get his attention in the first place?

Would he be able to process the instructions (especially as they would be delivered in not to him personally, but simply in the general direction of the group, and in a raised voice)?

I had my doubts.

I looked for dedicated ‘special needs’ swimming classes in my area, but found nothing.

Then one day Freddie’s school sent home a leaflet about a multi-sports club running at the local leisure centre.

As part of the club activities it offered a free hour in the pool for the children and their parents.

We took him along, and while we were there, raised the subject of ‘special needs’ swimming classes.

They didn’t know of any either, but one member of staff did offer one-to-one swimming lessons, and was already teaching a couple of children with additional needs.

Best of all, during these lessons she was always in the water with her pupil. It was expensive, but we signed him up.

Slowly but surely he began to make progress.

The look of puppyish glee on his face as he swam alongside his instructor made it worth every penny on its own.

But always there was always this little nagging voice in the back of my mind telling me that I was denying him his rightful chance to interact with his peers and participate in mainstream life, that I was underestimating him and holding him back.

It didn’t sound like my voice, but it was there.

During school holidays, Freddie’s swimming teacher holds her classes at a different pool.

Although Freddie is always a bit discombobulated during the holidays (although he likes not having to go to school, he doesn’t like the break in routine) he’s previously been OK with this change.

But last half-term, when we turned up for his lesson, there was also another class running in the pool at the same time, a group class, with its own instructor, WHO WAS VERY LOUD AND SHOUTY.

I had to resist the temptation to sit there with my hands over my ears, goodness knows, I thought, how Freddie felt about it.

It quickly became clear that he wasn’t coping at all.

He wouldn’t ‘listen’ to his own instructor (I daresay he’d just stopped processing and gone into shutdown mode), and he refused to even try to do a single thing she said.

In the end she brought him out of the water early, because he just wasn’t getting anything at all out of the lesson.

And as disheartening as it was to have his lesson cut short because he wasn’t co-operating, it did at least confirm to me that I had made the right decision.

I had not let him down or underestimated him at all.

It occurred to me that if I had insisted on enrolling him in an ordinary, public swimming class, then, rather than opening doors to mainstream life, I would actually have been limiting his opportunity for meaningful learning – because his particular needs would not have been met.

If I were to insist on placing him in situations where I know that he, as an individual, will not cope, or will not be able to process the information he needs to know (because it is not being delivered to him in the right way i.e. one that suits his learning profile), I would not be preparing him to take a place in the mainstream world.

No, I would be de facto excluding him from it in the long run, as he would be unable to adequately learn the things he needs to know in order to function there.

But if I allow him to take his time, and to be taught things in a way that makes the information accessible to his way of learning, then, even if it sets him apart sometimes in the short term, ultimately he will be more likely to be able to hold his own in the mainstream world, because he WILL have been given a fair and equal opportunity to acquire the knowledge and skills that he needs.

At the end of the day, Freddie is not a poster-boy for someone else’s campaign, or the hook on which I hang my own pride and ambition.

He is a little boy who needs his mother to shut out all the background noise, and open her ears fully to him and his needs.

Postscript: This week Freddie’s swimming instructor told me that, now that he’s had some intensive one-to-one, she would like to start overlapping Freddie’s lesson with that of another boy that she teaches singly, so that they would get a chance to swim together (with her in the water beside them) for part of their respective lessons.

I was agreeable, and so was the other boy’s mum.

I am very much hoping that this will work, because if it does, then slowly, stroke by stroke, we’ll be creeping towards our ultimate goal – that of Freddie being able to go to the pool during an ordinary public session, and enjoy a sociable swim alongside everyone else.

Disabled Parking Wars

If you looked at my google history you would get nothing juicy. It is pretty much entirely centred around my life as Amy’s mum/carer.

Searching phone numbers for wheelchair services, for the feeding tube button suppliers, addresses for places where we have an appointment.

Other searches include “cerebral palsy seizure types”, “safety tent for on bed, special needs”, “carers pensions” and so on. You get the gist.

Nothing interesting really, but definitely shows where my priorities are and what keeps me up at night.

The latest thing I googled was “how to deal with anger over things you can’t control.” I read through a few articles, none really seemed relevant to my specific situation.

So, I googled, “How to not let people parking illegitimately in disabled parking days ruin your day”.

I knew this was a bit tenuous and that I wasn’t likely to find the help I was seeking.

I stumbled up on a blog post of someone being angry that their next-door neighbour has had a designated disabled bay painted outside their home.

Why are they angry?! It isn’t in front of their house, it is in front of their neighbours’! And I am sure that the person requiring the bay had to fight hard to prove that they are even eligible in the first place.

You see, I am trying to get better. I seem to be on a journey of constant self-improvement. I don’t like my anxiety, I don’t like how irritable I can be.

I have explored various avenues to try and fix the way I process things and have tried hard to bring my self-confidence and self-esteem back up… but with some things I just don’t know how I will ever let go of these strong emotions.

Prior to having Amy, I was a bit oblivious to the world of disability. If I was entering a car park it would not have crossed my mind even for a second to park in a disabled bay.

Those bays were for people who needed them. I cannot get my head around the fact that such ignorant selfish people exist.

For us, the disabled bay isn’t about the proximity to the shop… I actually don’t care if the bay is a good few hundred metres away from the shop.

It’s space we need… ideally hatching the whole way around the bay to allow for ramp access and to get bags and equipment out with relative ease.

There are a multitude of reasons why someone might need a disabled bay, and that’s our reason.

What do you do when you see a car parked in the disabled bays that shouldn’t be? My responses vary depending on the day and my mood.

I shy away from confrontation at all costs generally… but this is an issue I feel very strongly about. Parking in general is a contentious issue for many so I know there will be divided opinions on this.

I once said to a man “excuse me, you forgot to display your blue badge.” To which he laughed, ignored me, and continued into the shop.

Too often the excuse is “I will only be a few minutes.” I can’t comprehend how they can think this is okay. Amy doesn’t use a wheelchair for a few minutes, she uses it for life.

It makes me want to put a notice on their car, maybe even a light hearted one explaining that it would be best not to do park this way again.

But some people just don’t care, and I feel that knowing my luck the person would see me place it and publicly attack or humiliate me in some way.

Earlier this week I parked in a huge empty car park only to find the two disabled bays were taken up by people who just wanted to be close to the door. Rage isn’t a strong enough word to surmise how I felt.

When I see a car in a bay where it shouldn’t be, it can ruin my entire day.

I walk around the shop hot with anger knowing that it could be anyone around me that has thought themselves worthy of depriving someone in need of access their place in the carpark. I really wish I could let go of the anger.

Usually I resort to informing the store manager and asking them to tannoy… in one shop they didn’t tannoy and they didn’t seem to care. To them as long as their customers are paying then all is good.

I often take to Facebook and tell the company directly that they need to better manage their carparks to ensure everyone is parking where they should.

I have even had situations at a local play centre where the person parking in the bay was an able-bodied member of staff that clearly just fancied their own personal bay!

It isn’t that I am a stickler for car parks… I see it more as a metaphor in general for how some people have a lack of respect and empathy for people with disabilities.

It makes me want to stay home because I can’t bear to deal with a world that refuses to change.

I want to think that everyone out there is nice and considerate and that people will go out of their way to make life easy and enjoyable for everyone around them.

For me it is a real anxiety trigger.

The public in general is always unpredictable for us on days out. We spend a lot of time walking around our local town centre. I’m not sure why but Amy thoroughly enjoys being taken around the shops.

I think she likes all the different sights and sounds, and also the motion of her chair on smooth ground. I am always a bit nervous of how each encounter will be.

You can meet 100 perfectly lovely people…. and you can meet one nasty person…. guess which you remember?

Guess which one keeps you awake at night?

A few weeks ago, I was queuing with Amy at the shops. The man in front of us looked at Amy, then at me. In my mind I was thinking “I bet he’s going to say hello to Amy and have a nice interaction with her.”

Imagine my horror when he turns to me and says “Did you damage her with vaccinations?”. I was gobsmacked. So much so that I didn’t even know how to respond.

Before I could muster up a response he said “is it autism?”. “No.” I replied. “She has cerebral palsy.” He replied “She has autism.” I couldn’t believe this guy!

I explained that she has a lot of diagnoses but, alas, autism was not one of them.

“They can reverse autism you know? They can fix it”.

The ignorance combined with his stark lack of inhibitions rendered me speechless. “Erm…” and before I knew what to say he departed.

The lady at the till looked even more startled than me. The whole thing actually had me physically scared… I was worried that he was going to harm us in some way or start shouting abuse.

The lady asked if I was okay to which I said “I think so, I just didn’t need that today”… I turned around and could see that the rest of the queue was flabbergasted.

Mainly tutting and shaking their heads, disapproving of the man’s actions.

How dare a perfect stranger ask such a personal question and make such assumptions about the nature of Amy’s disability.

On the way home, I went over and over the whole scene in my head, thinking of the 100 better responses I could have given other than “erm.” I got home feeling furious.

Amy using a wheelchair/having a feeding tube/wearing splints is not an open invite for a person to make assumptions or ask overly personal questions.

Amy hadn’t really noticed any of the ordeal, at the time she was quite dystonic and distressed.

I concluded the day relieved that hopefully she had not been affected by it, but anxious to leave the house again, anxious how I was ever going to let things like this be water off a duck’s back.

I wondered if perhaps this man had a mental health issue or a disability of his own that gives him challenges in social/public situations.

I don’t excuse his behaviour by any means because I know that he is out there somewhere enjoying life and probably doesn’t even remember the hurt or fear he made me feel that day in the shop.

But I hope that my wide-eyed horror reaction to his statements resonated and made him think again before he goes and upsets someone he has never even met before.

Have you had any interesting encounters or disabled parking bay rages? How do you deal with anger? I’d love to know how others cope.

The Blurred Line Between Parent and Carer

Today, I am indeed a working mother.

My job is a pretty involved one.

I spend a lot of time on the phone scheduling appointments and dealing with insurance issues.

I administer medication several times a day and perform routine medical care. I am constantly on call in case of a medical or behavioral emergency.

I can also multi-task like nobody’s business, and I work well under stress.

I am a working mother, but not in the way most people would imagine. I am a carer- for my own children.

It sounds odd, doesn’t it? How can a parent be a carer (or caregiver as we are commonly referred to in the United States)?

Aren’t we supposed to take care of our children regardless of their condition? There isn’t a simple answer when it comes to having a child with special needs.

When you are a parent of a medically fragile child or any child with special needs, you cease to be just their parent anymore.

The role expands to include care you wouldn’t normally provide if the child was developing typically.

For our family, it meant a lot of medical duties. Tube feeding for my daughter, and then when my youngest son came along a few years later, more tube feeding and a whole lot of tracheostomy care.

It also meant  giving up one income because one of us; either my husband or myself, has to be home with the kids at all times.

When my eleven-year-old daughter Lilly was an infant, there was no daycare that would accept  her with all her medical needs.  I had no choice – I had to quit working to care for her.

Even if I could have put her in daycare, I probably would have been the worst employee ever; having to take time off several days a week for all of her medical and early intervention therapy appointments.

Here in California, we are fortunate enough to have In-Home Support Services, which will pay a parent  to be a carer/ care provider.

To determine eligibility, the child will be evaluated and assessed by social workers and physicians. If they qualify, a certain number of billable hours are allotted to them depending on their needs.

The child must meet strict medical criteria, and the family must have no able and available caregivers locally.

In a two-parent household, one of the parents must be working or in school full time, and the other unable to work  because the child requires a certain level of care.

The hourly wage is minimal, considering that many of us do the work of trained nurses, but I am grateful for the program. It has allowed us to stay afloat financially.

Being a carer for anyone, much less my own children, would not have been my first choice of occupation.

It’s hard, messy work; it goes way beyond the typical messes of childhood. It can be physically and emotionally draining.

It may not have been my first choice, but I honestly wouldn’t have it any other way now. It has allowed me to bond with my children in a way I never imagined.

It has given me a new perspective and taught me that patience and perseverance pay off. I’ve also learned that it is impossible to compartmentalize my life into labels of  “parent” or “carer.”

I am both, but to my kids, I am simply “Mom,” and that is the best label of all.

Men’s Health Week – Special Needs Dads Need Support

The stresses and strains of parenting a child with additional needs are 24/7 all year every year and added to the anxiety and even guilt that many parents will experience it can all add up.

It can make it more likely that families where there is a child with additional/special needs or disabilities will fall apart under the pressure, with 53% of families claim that having a disabled child causes some/major relationship difficulties or breakups (source: About Families)[1].

What are the triggers for this, and how does it affect Dads in particular, including their emotional, mental and physical wellbeing?

Pre-diagnosis – worry

In the early stages there is the trigger for relationship breakdown as we are struggling with understanding what is going on with our child.  Is there something wrong?

Are we just being paranoid?  What’s wrong?  Is it serious?  How do we find out?  Who do we ask?  Do we want to find out?  Secretly, are we avoiding this?

This period of intense uncertainty can be really difficult relationally, perhaps opening up cracks that were already there, perhaps opening up new ones as so much focus is on our child and not on each other.

Guys are not great at talking about their feelings but struggling with our feelings alone is not the answer.

Diagnosis – shock

Then we get a diagnosis for our child.  In some ways it is a relief as at last we know what we are dealing with, but then a whole bunch of new questions come to us.

What does this mean?  We don’t understand… how did this happen?  Was this our fault… blame… did we do something wrong?  Why did this happen?  Why us?  Why not somebody else?

Suddenly we are faced with the loss of the future plans we had for our child, for our family, for ourselves… it all lies in tatters.  It can be devastating, we grieve for what is lost… and can turn on each other.

It can be a time of huge emotional, mental and even physical turmoil for everyone, including Dads, who can really benefit from being able to talk to someone.

Care for the Family have their excellent befriender service which matches families up with people who can chat with them who have experienced similar situations themselves.

‘Take 5 and Chat’ offer another way of linking families that are on the same journey and bringing them together for mutual support (and cake!)

Parents of children with additional/special needs often feel excluded from a wide range of social activities (source: Mumsnet)[2]  and so accessing services like this can be health, life, and relationship saving!

Care for the Family befriender service

Take 5 and Chat

Five stages of grief:

Most families that include a child with additional needs or disability will go through the five stages of grief, often many times.

This is a natural response to some big life changes, but it can be overwhelming for many families, including Dads, and a real trigger for relationship breakups.

  1. Denial/isolation – overwhelming emotions, the inability to control them, fight or flight instinct kicks in… denial of the situation, blocking it out, hiding from it and hoping it just goes away.

It’s not unusual for families to split apart at this point.

2. Anger – reality, and the pain of the diagnosis, breaking through our denial.  It can burn deep and cause us to lash out at those trying to help us.

It can be terribly destructive and can and does cause relationships to fail.

3. Bargaining – “If only we had…” trying to rationalize it, trying to regain some control of the helplessness and vulnerability we feel.

If we have a faith we might try doing a deal with God “If you make this go away I’ll…” trying anything to protect ourselves from the painful reality.

4. Depression – sadness and regret about the lost dreams, a deep sense of mourning for what is lost… coupled with a gradual and profound realisation that this isn’t going away.

Couples can easily drift apart here as they become immersed in their own feelings.

5. Acceptance – not a gift received by everyone.  It’s not about being brave, but a gradual sense of understanding of the emotions that we are going through, of the changes that the diagnosis will bring for us, for our child, for the rest of our family, and a growing desire to move forward and make the best of things.

Things will be different, but they can still be OK.  We are ready to embrace not what might have been, but what is.

There is a great story called ‘Welcome to Holland’ told by Emily Perl Kingsley that helps us to understand this cycle of grief, identify where we are in it, and to see that there is hope.

Dads should seek help and support as their family is going through this cycle, participating in counselling and pastoral support, as fighting it off or bottling it all up just doesn’t work and will adversely affect our health and relationships.

As guys we try to fix things… we can’t fix this alone, we need to get support and help if we’re going to help ourselves, our partner, and our kids.

Getting Dads together to share their experiences and stories, to help each other to know that they are not alone, not the only ones dealing with stuff, is really helpful.

Statistically, if a family with a child with additional needs or disability splits up, it’s almost always Dad that leaves.  Talking saves relationships, saves our health, helps our family, and helps us.

Let’s be better at accepting that we are struggling emotionally, mentally, and physically with our situation, and seek the help that we, and our family, desperately need.

See also:  ‘Additional Needs Parents; Disrupted, Resilient, Vulnerable, Broken, Loving’

[1] ‘Together and apart: supporting families through change’ (2011)
[2] ‘Mumsnet parents: negative attitudes are holding back our disabled children’ (2014) 

The Greatest Job

Now look at this photo – do you see sadness here? Sickness? Disability?

Or a little boy, proudly showing off a new skill (balancing)?

In the past 7 years I have taken on more than one new role.

I’m a parent AND a carer.

At 7, my beautiful boy has the physical abilities of a 6-month-old; doubly incontinent, severely visually impaired, unable to sit fully without support and is yet to talk.

His life is threatened daily by the seizures that rage like a storm in his brain; my instinct to protect, defend and destroy any threat to his safety makes me a force to be reckoned with.

Parent carers sacrifice our own health, friendships and in many cases relationships.

It is an immense responsibility, and guilt is never far away – am I doing enough?

Can I do more?

It is virtually impossible to find time to be husband and wife, when every moment of every day is consumed with preparing feeds, meds, ordering continence supplies, filling in equipment requests, dealing with appointments…

My husband, Sam’s beloved Dad, is my best friend and partner in crime.

We care for our son as a team.

Sam is our only child so we can devote ourselves to his needs and care completely, without the guilt others face of having to split our time between other children (although the dog often sulks at being ignored).

Don’t let appearances deceive you.

There is so much love and happiness yes, but we are also so very, very tired, and so very worried about the future.

My greatest worry is who will look after my boy when I’m gone?

Who will love him as we do, who will be there to comfort him when the seizure monster is raging?

While I nag J about making sure Sam’s therapy is done as I dash out of the house to go to work, he has to organise housework, calls from school/nurse/therapist/surgeon, and then check with me that particular dates are free in the family calendar.

Caring takes both of us, it is the biggest responsibility imaginable but the reward of seeing our boy happy, safe, achieving his potential and having the equipment he needs makes it all worthwhile.

Being a parent is awesome, but having the honour of caring for this precious little bundle demands everything.

It really is the greatest job of all.

A Carer’s Week

It is half term.

Less time, more care duties.

How will she ever manage to do it all?

The drawing and giving of medications, setting up the tube feeds, keeping on top of paperwork and the phone calls. The washing, the prescriptions, the appointments… and the worst of all – the washing. So much washing.

The daily bedding changes, the meltdowns, the running of the house, all of it. How?

She takes a deep intake of breath. She exhales. You’ve got this. You can do it. She assures herself, with a lump in her throat.

Respite days used for chores, the days as mum and carer occupying a child that is unable to occupy herself.

She yearns desperately to feel that feeling… that feeling of freedom and lack of responsibility.

Then she feels a wave of grief and guilt for feeling those feelings.

She counts her blessings every day and knows how incredible it is that she has this role.

She worries about the future – the pension (or lack of decent one), the lack of real holidays, the no sick days.

Her mind then progresses further – what about when she is no longer there? Then what happens?

Every night she climbs into her bed.

Her lower back pulsing and throbbing with pain, her hands chapped and sore from the constant cleaning and washing.

She expects to immediately fall into a deep slumber but instead she lays awake.

Thinking. Just thinking.

Where do we have to be tomorrow?

Have we prepared notes?

Have we packed appropriately?

Will there be wheelchair access?

Where is the nearest hospital?

Is the iPad charged?

What if she has a meltdown, how will I cope?

What if she has a bad seizure?

Are the rescue meds in date?

Should we go and check?

The insomnia kicks in.

Her mind then moves to “do people think I’m a sponger?” “do they know how hard they work?”.

In her head she replays the conversations.

They unfold in the form of a montage.

“are you still not working?”

Not working?

“I’ve never worked this hard in my life” she thinks to herself.

But she’s too afraid to say it.

She doesn’t want people to think of her child as a burden – she isn’t a burden.

But at the same time, our life has turned entirely upside-down.

“Do people think I’m lazy?”

“Do they only talk to me because they pity me?”

“Do they think I did something to make her this way?”

“Do they look down on me?”

“Should I be working? Am I doing this right?”

The next day comes and her head is sore.

She wishes she hadn’t spent the night tossing and turning, having nightmares, feeling pains in her back.

It is a new day, what will the day hold?

“Can I do this? Have I got the physical and mental strength required of me as a mum and carer to go about this day?”

Each trip is met with additional obstacles that otherwise would not exist.

She sighs as she gets the seatbelt wrapped around the wheelchair and is unable to get her child out of her car.

She winches it back in and uses all of her strength to untangle the seatbelt and release her child from the car.

As she does this she watches a man with a child of the same age watch his child of the same age as hers hop out of the car and run to hold his hand.

She feels that pang of grief in her heart.

Why does it have to be harder for us?

The guilt kicks in again. She shouldn’t feel this way… she should accept things as they are, not compare, and be grateful.

Where are the wheelchair trolleys?

She searches the carpark looking for a trolley that will attach to the chair.

Her child becomes “seizurey” and dystonic… she doesn’t like the loud noises another child is making in the shop.

Breathe. Breathe. You’ve got this.

She plans her route with military precision… fruit. Nappies.

Milk. Coffee, definitely coffee.

She darts around the shop performing elaborate renditions of her child’s favourite nursery rhymes.

This used to make her self conscious. She no longer cares.

She gets in the queue. Self-checkout… we don’t have to talk to people here.

Another child takes an interest in the child. The child stares.

The mum begins to feel her heart rate rise and her cheeks get hot.

Why is this child staring so unashamedly?

Just say hi, look away… do anything other than what you are doing.

She knows this is only natural but she has seen it too many times before and she aches inside at the thought of other children seeing hers as “different.”

“Look Amy… that little girl is looking at you… are you going to wave and say hello?”.

She finds the least painful way to confront this issue and advocate is to introduce the able-bodied community to the child.

Awkward exchanges are made.

She makes eye contact with the other parent and smiles.

Did I do the right thing? Did I make it worse?

Why did I leave the house?

She starts to well up.

Don’t cry. Don’t cry. Just get to the car… high five your child for being so good in the shop.

It’s a lonely world, she thinks as she walks out of the shop.

On her way to her next destination she drives past her old place of work.

She remembers with great nostalgia her love of this job.

She remembers the pride she took in her work, her love of adult conversation and her ex colleagues.

She remembers being able to clock out from her duties. She grieves.

The day she left that job, she was most likely replaced. In her current role, carer… she is sort of irreplaceable.

No one replaces mum.

She reminds herself of how far she has come and reassures herself that she is a better and more resilient person now than she ever was before.

Every day she steps into the shoes of many roles.

She is a nurse, a doctor, a physio, an OT, a speech and language therapist, a dietitian, a gastro consultant, a neurologist… she is everything, to this one person.

This reminder brings comfort but also fear… this is so much responsibility.

How can so much responsibility only pay about 30p an hour?

How can it make your self-esteem drop so far?

How can it make you look like someone without a “real” job when carers of strangers are paid about 40 times per hour what she is paid?

But then how is she a carer?

She hates the term carer.

It dissociates from the fact she is a mum.

In fact, she has grown to hate both terms. “Mum” is something the health professionals refer to you as… and it is the word that you know your child will probably never say.

Carer implies a person with a financial interest in looking after a person.

She feels lost.

She feels entirely dissociated from both the working world and the non-working world.

She drifts between relaxed normal life and working life.

The two merge together, co-exist, and depend on each other.

The barriers are confusing… the people in her life are often paid to be in her life… and they feel like friends… but in a way they are not.

Boundaries are blurred, her role is blurred, and nothing is certain.

She contemplates daily about “carer” and its meanings.

Her health has worsened – she picks up every illness, every infection.

She has gained a tremendous amount of weight; her confidence is gone.

She wonders if things will ever be different.

Will the hardest working people ever in the world ever get the recognition for what they do?

Do they have their own identity?

Are they receiving the right level of help to maintain their mental and physical health so that they are able to do their job to the maximum of their capability?

It is a job that pays so little and can take so much… it is a job that you don’t choose… you don’t have an interview, you don’t get any perks.

But it is a job you do with pride, honour, and most importantly, a deeper love than anyone could ever possibly comprehend.


I wrote this piece as a stream of consciousness for carers week.

If you know someone who is a carer… of a parent, a child anyone… ask them… and ask them sincerely… how can I help?

Sometimes, even going out for milk is an improbable mission.

Sometimes, we need company.

We feel a huge range of emotions all day, every day.

It is draining.

We need you, we see you, we appreciate you.

Before this… we were just like you… anyone at any time can become a carer, and they deserve a huge amount of attention and respect… as do the awesome people we get the privilege of caring for.

Until in this world I hadn’t realised how underfunded so many things are and how hard carers fight day to day just to ensure that theirs, and the person that they care for, needs are met.

Sick and Tired of being Sick and Tired

I have tablets for under active thyroid but much more seriously I am now dependent on steroids because my adrenal glands don’t work anymore.

Ten years of stress has taken its toll on my body.

I have piled on weight and other than the school walk I take the car. I miss meals then order take away because by the time I have dealt with yet another meltdown I have no energy left to cook.

Worry keeps me awake at night and anxiety controls me by day.

Yet again I am at the doctor who this time sends me to a specialist optician.

Once again, I have an infection. My body is weary and I seem to go from one thing to another with no recovery time between.

This time it is more eye drops, more tablets and ongoing appointments. I am unsure if I even have time to use drops four times a day when both my children need me 24/7.

As usual I often forget and the infection continues to get worse.

Then three weeks ago today I found myself sat back in the optician’s room as she examined my eyes and it happened: I cried!

I am sick and tired of being sick and tired as a special needs mum!

Something had to change.

I stood on the scales and wanted to hibernate for the rest of my life!

To my horror I weighed two stone MORE than I did when 9 months pregnant with twins! I am so ashamed and actually can’t remember the last time I so much as made it to the hairdressers for myself or bought myself new clothes.

The reality is that I have devoted everything to the needs of my two children and in doing so destroyed myself.

I wiped my tears away and apologised to the optician.

I have had enough of infections, lack of sleep, neglecting myself and bad habits.

That afternoon I googled the opening times of my local swimming pool.

I had taken my children before but never actually swam since I was 15 (currently in my forties!).

I wasn’t sure my costume would even fit but something needed to change.

That evening after my children went to bed I didn’t sit on the couch with tea and chocolate instead I drove to the swimming pool.

I was shaking as I went in and really unsure if I would even remember how to swim! It was a huge effort to get that costume on.

The cubicles were smaller than I remembered (I only used the family ones as had only ever come with my children) and the lockers fiddly to work but I was proud that I had got there at least.

Swimming was a massive effort.

Every length seemed to last forever and I had to stop and rest.

By the time I had done 12 lengths I was exhausted so got out and came home. I washed and dried my costume and the next day decided to try again.

The second time was easier and I managed a few more lengths.

Suddenly I was forming a habit and decided to buy a monthly swim membership to make sure I kept going.

The chocolate is still sitting where it was three weeks ago.

I am slowly making healthier meal choices and adjusting my lifestyle.

The weight of the world was not just on my shoulders but on my hips, bottom and thighs too!

Ten years of hospital outpatient appointments for my children, fighting the system for the slightest thing, watching my child have seizures, holding my crying daughter when anxiety gripped her entire body and filling in forms all about my children’s struggles have taken its toll.

Three weeks of swimming won’t suddenly change that that.

It took a long time to get this way and it will take time to change things.

But for the first time in years I have went three weeks without an infection.

Three weeks where I have slept better and eaten healthier have lifted my mood and my mind.

I swapped the fizzy juice for water and the chocolate for lengths of the pool.

In order to properly care for my children, I need to properly care for myself first.

I was sick and tired of being sick and tired as a full-time carer so I took the caring onto myself for once and I feel much better.

My children’s needs are still very high but I am in a better position to help them now.

This is Epilepsy

We’re cuddling up together, reading Dr Suess when it starts.

A flicker of the face, eyes starting to deviate.

The monster is stirring.

I don’t have time to lie him flat before the first convulsion hits so I just hold on to him… start the clock…

His little body jerks sharply forward before snapping backwards into a painful arch, a low groan coming from him as the air is crushed from his lungs.

1…. 2….

15 seconds, he’s breathing again, body relaxes momentarily before the next shockwave slams into him.

30 seconds….. 35….. 40…..this time so strong it slams his head backwards into my face.

I’ve lost count of the times we’ve done this dance…

I can feel my heart cracking…

2 minutes in…. Breathing stops again as another tonic hits, causing his muscles to contract hard and tear him out of my arms into an agonising arch backwards, his eyes vacant.

He isn’t aware of what’s happening, thankfully.

I watch, count his breaths, pray for him to be safe…

5 minutes….. 6….. 7….seconds feel like hours as my boy is battered by an invisible enemy…

10 minutes…. convulsions weakening.

It’s safe to move him now, his body like a rag doll as the exhausted muscles all relax…

He’s becoming aware again, legs perform a cycling movement as he’s pulled over to the side in another arch as the tsunami once again rolls over him.

I shift from sitting behind to lying next to him, reassuring him.

Hearing is the last sense to go and the first to return, he knows I’m here.

A small, clammy hand reaches out and frantically swipes at mine..

I gently squeeze his hand and tell him I’m here.

I become aware of something dripping on my hand, its blood.

My blood, the earlier blow to my face caused a nose bleed.

15 minutes…

Its over.

This is epilepsy.

The demon my son battles daily does not get tired.

It doesn’t sleep, it doesn’t stop.

It doesn’t care that it’s the weekend, or that we’re on holiday.

It doesn’t care if it’s Christmas, or his birthday.

It is relentless, brutal, merciless and is a killer.

Despite current therapies, around 30% of patients with epilepsy struggle to gain any sort of seizure control.

Sam is one of those 30%.

When all possible avenues have been exhausted, we look to the impossible.

Because someone I love with all my heart needs, and deserves, a cure.