A rock and a hard place

After a year long reprieve from the worry of seizures, the worst has happened – my son had another one.

Henry’s seizures are particularly strong tonic clonic, radiating from his eye down to his toes over twenty minutes or so.

They are excruciating to watch; I can’t imagine how it feels on his end.

I do know that, with his rescue med administered, his seizure subsides but the effects of the medicine knock him out for twelve hours or so, and he isn’t back to his normal personality until the following day.

So now the question comes to me, should I start him on regular, daily medicine, or continue with a rescue med only? I’m stuck between a rock and a hard place, and it’s not a fun place to be.

Sometimes, the decisions we make for our children are easier to navigate through.

Often, this depends on the possible outcomes; when either choice will lead to a positive result, deciding when or how to do something is simple. But there are so many times when the outcome could go either way – should we choose private school or public?

Should we move to a new place or stay where we are? Is this friend a good fit for my child, or should I steer them toward another playmate?

The deciding can be overwhelming. I can’t predict the future, so how can I know what to do?

Well, we can’t, obviously. But we can make an informed choice for our kids because we know them, and ourselves, and what we value.

We can rest assured that school, neighborhood, and friend choices can be altered and adapted as our children grow and, ultimately, our kids will be all right.

Then there are the rock and hard place decisions, the ones that don’t have a clear outcome or goal, or one that is unattainable.

This is where I’m at with my son’s seizure plan.

If I put my son on daily medicine I run the risk of altering his personality irrevocably.

Seizure meds alter one’s brain, that is their intention and result. My boy – bright, cheerful, communicative, funny, cooperative and social – may turn into a different child entirely.

Or maybe not. The point is, I don’t know.

However, when we only have a rescue med it means he is going to suffer from seizures, and when he does he will suffer both during the event and after.

Something I’ve had to come to grips with in my adult life is that sometimes, there isn’t a good option.

You are simply choosing the lesser of two evils, and it’s going to feel horrible. There is no way around it.

This is the responsibility you take on as a parent and the best decision I can make for my child is to accept that responsibility.

Rock, hard place, or not.


Last year I decided to ditch my New Year’s Resolutions and following in a friend’s footsteps I chose a ‘word of the year’.

The idea being, you pick one word to focus on every day all year that sums up who you want to be, or how you want to live.

Last January I was feeling frustrated by all the things I hadn’t found time to do. When I reflected on 2018 I felt that I had plenty of time but was not utilising it effectively. So my word was ‘Time’.

It seemed to start off well, I began ticking off some of the things that had been hanging around on my to-do list for too long.

Pretty soon however I began to feel the burn out. Utilising all my time in industrious endeavours was exhausting.

As I limped towards the end of the year I was beating myself up over my inability to use my time constructively.

I was still building an impressive to-do list, I was still feeling like I was failing at being a mother and carer, and I was still unable to give myself the care I needed to survive.

Then a post on Facebook summed it up “When I say I don’t have time to do something, what I mean is that I am already giving as much of myself as I am able”.

Yes! It’s not about time, it’s about how I’m coping generally on a day to day basis with all the worry and stresses that come with not just being a parent but also a carer to a special needs child.

So as I prepared to welcome in the new year I reflected on what I wanted to say goodbye to, and what I wanted to welcome into my life in 2020 and I realised that above all else I needed more compassion.

Compassion for my family, they might drive me up the wall at times, but they are still trying their best.

Compassion for my friends who might not have the same struggles we do, but still have struggles of their own.

And most importantly, compassion for myself. Because I am trying my best. At all times.

Sometimes it is really really hard, and if that means I can’t achieve as much as I’d like then that is ok. I am good and I am worthy, I deserve to be happy and healthy. I deserve to be loved by myself and others.

It is ok to prioritise myself from time to time to ensure that I am at my best for caring for my family. It’s ok to not be perfect, it’s ok to not achieve my high expectations.

So everyday this year I shall look in the mirror and remind myself to extend myself some compassion.

Power to the People!

A close relative who is also an Occupational Therapist has recently found herself on the Special Needs journey.

She works in hospitals four days a week. People consult her for advice and opinions.

On her other days in hospitals for appointments, with her Mum hat on, she had noticed something strange.

Her opinions are an afterthought.

“We’ll do this and this and this. Alright Mum?”

Opinions and appointments are offered as a foregone conclusion.

If she knows an investigation is available or helpful, she has to repeat herself.

Again. AND again. She has to employ more assertiveness and determination her mum role than she does in her professional one. There is an imbalance of power.

I am not offering this as an example of how bad professional are. She is one, I was one.

Only a generation ago Doctors and Health Care Workers weren’t required to work collaboratively, they were Consultants, the ones with the answers.

Naturally good doctors always have been great communicators, but if they weren’t it was rarely questioned.

You had less choice in who you saw, and knowing a Medics first name, much less using it was a very rare thing. This is the medical model-you see a medic they fix you.

Things have changed a great deal, and some have stayed the same.

The Medical Model continues to haunt the NHS-and let’s be honest as users it is what we would really like.

Imagine if I took my nonverbal girlie to the Paediatrician and she was given a pill and came out talking!

In the beginning of the Special Needs journey this is what most of us want and expect.

There must be an answer, mustn’t there?

So, the imbalance of power is partly historical, partly to do with a Western idea of medicine, and partly handed to the professional by us. (Think “my child is broken please fix it”)

There are other reasons though that we find ourselves disempowered as parents.

One is very simple. We are in crisis. A situation has occurred that we have not encountered, most of our friends and family haven’t experienced and we are not taught about at antenatal.

We have a child who is different, and we don’t know what it means, for us for them or for the future.

When I was working as a Speech and Language Therapist, I had loads of experience of Speech and Language problems. None of this experience was personal.

I had met and become close to lots of clients with language issues, but I had not lived with them.

The Hospital I worked in was my place of work-for the community it was a place of crisis.

Friends and relatives had experienced the worst moments of their lives there, and some had lost their nearest and dearest.

My friends worked there with me, shared coffees and lunches. The work was emotionally taxing (health professionals are generally an empathetic bunch who experience some degree of vocational calling) BUT at the end of the day I went home.

I offer this as an explanation not as a solution.

Professionals can become excited by new therapeutic solutions that won’t work for you, for your child or family-so how can you come to hospital meetings and not be overwhelmed or feel confused or railroaded into plans you are not happy with?

Feeling emotional, confused and vulnerable is normal. You are in an unusual situation.

In the early days try not to go to appointments alone. If you don’t have friends or family able to come, local parent support groups should be able to offer you an advocate.

This is great as along with having another person on your side of the table they can debrief you afterwards. It is entirely possible to go in to an appointment and feel you’ve understood everything only to immediately forget it all.

Trust me I’ve done it!

Think of what you want of the appointment. Write it down before you go in and try to get your questions answered.

If somebody says something you don’t understand ask. You are not being stupid; they may be using language they take for granted in work life that normal mortals just don’t speak.

Try to summarize what has been said in the meeting to check you both understand.

“So, you’ll make an appointment and I’ll get it in the post?”

You may not get on with every Professional you meet. That is OK they are not your friends.

If, however you think they are not working in your best interest, despise you or seeing them makes you feel physically sick you should probably talk to someone, because that is NOT alright.

Finally treat yourself! If the idea of appointments and the amount of emotional strength you need to get through them makes you anxious try to trick yourself with the promise of coffee cake or McDonalds on the way home.

It works for my 13-year-old, and frankly me too!

The dream is meeting Professionals who you get to know, form a good working relationship with and who you look forward to seeing.

It will happen and when it does, when they understand you and your child that is momentous. Cherish those people and reward them with chocolate if necessary, they are worth it!

Refilling the empty cup…

So many people have talked to me about self care over the past three years.

The analogy of the empty cup has been used a number of times.

I am sure I am not alone in finding both the concept and the practicality of self care a challenge.

Contrary to popular belief, it is possible to carry on and on pouring from that cup.

There have been times in the last three years when I know that if I stopped and put everything down to think about what I needed, I wouldn’t have been able to pick it all up and start again.

So it is possible. But it’s not a recipe for happiness.

A long bath, a massage, a spa trip, a glass (or two) of wine with friends, a run, a swim, a trip to the cinema, a long chat to a good friend, a cup of coffee looking out into the garden, 20 minutes playing the piano.

All examples of ways to take care of myself, of giving myself a physical or mental boost to enable me to better take care of those around me.

I am lucky that there are lots of things that I know help me to feel better.

But while these all sound like textbook examples of self care, it is the bit underneath it all that I find very difficult.

I find it hard to value myself enough to do it. I find it difficult to believe I deserve the investment in either money, time or effort.

Something hardwired in me, and I believe in many of us, feels that my value is in the care I give to others.

Having a child with additional needs has only compounded that.

I know that I need to keep myself well in order to do that, but trying to make that ok in my head still takes work.

It also takes acknowledgment of the need, which is more complicated than it sounds.

It means accepting that there are things about my life that mean time out from being a parent and a carer is important.

And that means accepting that Duchenne has changed our lives, has changed my role, my responsibilities, the level of anxiety I live with, the things that take up my time.

It means acknowledging not just the physical but the emotional toll of endless hospital appointments, of the huge impact of incorporating a disease like Duchenne into our day to day lives.

I have a need to have it all together all the time, to present myself to others as being consistently positive.

For me, self care is less about things I can do for myself and more about getting rid of the “should” from the way I talk to myself.

It means letting myself off the hook when I feel overwhelmed, not feeling that I have failed when I need an hour to cry before I pick myself up again.

It means not feeling that I “should” be coping better, doing more, being more positive. It means not feeling guilt for sometimes needing an identity beyond a caregiver.

Self care literally means caring for the person I really am rather than the person I feel I should be.

Caring for myself not in a practical way but in an emotional one. It means getting rid of the voice in my head telling me I should be doing it better. It means believing I deserve care too.

While the massages and cups of coffee are good, the cup doesn’t refill without the bit underneath.

And here we go again

Ah, 2020.

Welcome to the party – 2019, you have overstayed your welcome and may now buzz off.

After what has probably been the toughest two years as a family yet, with life-threatening illnesses and full-on carer burnout, the new year didn’t so much explode into being as arrived with a slightly pathetic ‘ftzzz’.

I try to be enthusiastic for the year ahead, I really do. It’s just that after 8 years of living this extraordinary life I’m not exactly expecting anything to change.

My son will still have the same needs, and the battles will continue although they may look a little different to last years.

Sam is growing like a weed (very rude if you ask me), and as he gets taller and heavier the physical demands of caring for him are getting tougher.

My little boy is little no longer, and his father and I continue to grow older.

I’ve long since stopped hoping and praying that he’ll learn to stand or self-transfer. His muscles simply won’t hold him.

Thank the Lord for hoists is all I can say. Once I dreaded those things becoming necessary – yet when last year they were fitted I could’ve skipped for joy. Funny how our perceptions change.

And that isn’t all that’s changing. I’m going to be an Aunty again, for one thing; Sam continues to defy any limitations put on him and is doing things HIS way, as he always has.

After being dangerously ill last year, this child continues to amaze me with his strength and determination.

His ability to communicate continues to improve, his ability to support his body when sitting does too.

After suffering the full effects of my mental health being shattered at the end of 2019 I will be taking rather better care of myself this year, maybe not staying up quite so late filling in forms for a start.

Less social media, more social time with the people who matter.

And absolutely more time spent with my son and husband; when mobile phones and laptops, forms and funding applications are left far behind.

No matter how bleak things seem, or how difficult the year ahead looks its worth remembering how nature deals with the changing seasons; nature dies back in winter, only to spring forth with renewed life in spring.

Like the plants, we also need to take stock and rest.

If we don’t, we won’t have the energy for the important battles, or the insight to know which need to be fought now and which can wait.

My sons needs will evolve, and we have to be ready to evolve with him.

But most importantly, we won’t be ready to grow again when the sun shines and the dark days are behind us.

Here’s to 2020, may the year be kind.

Having a child who is forever vulnerable

Vulnerable: to be weak, without protection, easily hurt physically or emotionally, easily influenced, prone to attack, naive, easily taken advantage of.

I used to think of vulnerable in terms of a small child unable to defend themselves, an elderly person living alone unable to fight off an intruder or a homeless young person who could easily be taken advantage of by others.

That was until I had a disabled child of my own.

My son was born vulnerable. Smaller than average due to being a twin, a little premature and struggling to regulate his own temperature.

He remained vulnerable as a toddler still crawling when all the other children were walking and in danger of being tripped over or having his hands trampled on.

He started nursery vulnerable, relying at three to be carried still, needing adults to guide him, feed him, change him and dress him.

He started school still vulnerable unable to speak, not understanding the world yet and still needing adults to do everything for him.

This year he finishes primary school and he’s STILL vulnerable.

Still non verbal, now with significant learning disabilities, diagnosed autistic, complex medical needs, visually impaired and still requiring adults to dress him, brush his hair, wash him and see to his bodily needs among many other things.

We can all have periods in our lives when we are vulnerable, perhaps driving in an unfamiliar town, starting a new job, living alone, walking in the dark or feeling unwell. Having periods of vulnerability keeps us humble and human but it’s uncomfortable, frightening and damaging to our self esteem.

Most people go out of their way to avoid being vulnerable because the feeling of helplessness is disempowering.

Now imagine how it feels to have a child who will be forever vulnerable.

He will forever be prone to danger.
Forever be weak.
Forever without protection.
Forever easily hurt physically and emotionally.
Forever easily influenced.
Forever prone to attack.
Forever naive.
Forever easily taken advantage of.

That’s terrifying.

When people see special needs parents like myself and say things like ‘she’s very over protective’ or ‘still holding his hand at 11? I’d never do that!’ or ‘you need to give him more independence’ I wonder if they understand vulnerability?

Can they see the fear in my eyes, hear the fast beating of my heart and notice the never ending worries swirling around in my head?

I can’t take my eye off the ball.
I can’t stop being concerned.
I can’t ‘back off’
I can’t die.

My child can’t go out to play, be alone, be sent to the shops for me, go out on a bike, see his friends (he hasn’t got any anyway), or even walk to school. He requires adult supervision all the time and always will.

He can’t speak, he can’t read, he can’t write, he can’t ask for help and he can’t get himself food. He’ll never live independently or work or marry because he will be forever vulnerable.

He was born vulnerable, he has grown up vulnerable and he will die vulnerable. My job as his parent is to protect, advocate, nurture, guide, teach and put in place everything needed to ensure he remains safe throughout his life.

The world is a scary place when you are alone, in the dark, unwell, somewhere new and always reliant on others for everything.

Now imagine you had a child who was forever like that.

That’s what it’s like having a child who is forever vulnerable.

Parenting my children

My parenting style for my 3 children is so different.

I know this is the same for every parent with children different ages, but for me with Ethan at the age of 9 my parenting style hasn’t really developed or changed a lot.

Firstly they are all different ages and stages but more importantly they can all achieve different things.

From the outside it might look like I’m harder on the girls than I am Ethan.

Ethan can’t answer me back or pull things out of a cupboard.

I’ve written before how when people moan that their child is into everything and how they wish they wouldn’t and there’s me over here wishing he would be in the DVD cabinet pulling them all out!

On a daily basis I have to do this for Florrie and yes it’s frustrating and time consuming but I love that she can do this.

I secretly love that I find a toy in my bed now or accidently step on one when I head to the bathroom in the middle of the night.

I have to teach the girls boundaries and rules. So that means reminding them, lots, that they need to not throw their toys or they need to use their manners.

I don’t need to do this with Ethan. He can’t get up to mischief and shout at me when I ask him to do something. Dakota always finds it annoying that Eth never has to tidy up.

But he doesn’t have to because toys are brought to him, not him getting them out!

Ethan doesn’t get my annoyed voice very often because he can’t be naughty. I mean he is very cheeky but he’s not drawing all over the walls.

I’m saying I always stay calm because sometimes he is so moany I have to use my stern voice at times to try snap him out of it.

My interactions with Ethan are more calm and are all pretty much one sided.

He occasionally babbles back to me in response. He responds with facial expressions so I guess what he’s thinking.

I know him inside and out but it’s still a massive guessing game when he wants something.

The girls are easy to know what’s up. They are both at an age now where they can tell where hurts or if they are hungry (in Dakotas case she’s always hungry!).

So the girls needs are met easier and quicker due to them making more noise. Ethan is very placid, mostly, and he doesn’t demand my attention as much as the girls.

The girls can get into situations where they need catching or saving quickly. So I go to them a lot.

Poor Ethan has been left on one side of the garden centre while I run after Florrie on multiple occasions.

Playing with each of my children is totally different.

The girls can play back with me. Dakota can have full conversations and extend play which makes role play and games more fun. Florrie’s attention span is lower so games are often quicker but she still plays back with me.

I find the easiest things to do with Ethan are messy activities or activities which don’t need words to extend play. He loves stories and looking at lights.

It means I can interact on a completely different level with him.

Just because I have to interact and parent my 3 children differently doesn’t mean I love each of my children any differently.

All 3 get my best and worst at times.

I hope that others can see that I’m trying my best and adapting to each child’s needs the best I can.

Parenting a child with special needs

From the outside looking in people may look at us and say we have it easy.

Some may even say they couldn’t imagine doing what we must do every single day. And that’s being a full-time caregiver to our special babies.

I’ve heard it all because people have different views as to what it takes to be a parent of a child with special needs.

Some see our children in wheelchairs and automatically assume that they can’t do anything. Some look at our children and try to empathize with us.

But unless they’re there caring for a child with special needs day in and day out, they really don’t understand.

As a parent of a child with special needs I’m always told if it is hard you know how to make it look easy.

Its not that I make it look easy its just how it seems to those on the outside looking in.

For the past few months caring for my son has been a rollercoaster ride.

Especially with his behavior. If things don’t go his way or if anything is out of his norm it causes complete chaos.

Sometimes its easier to give in to the things he wants or want us to do rather than him lashing out on us.

Lately we’ve literally been feeling it. From the hitting, to the scratching, to the biting and kicking.

Anything he can do to make us do what he wants. But this isn’t the thing that people from the outside looking in see nor is it something we talk to everyone about.

They don’t witness the sleepless nights or us cleaning bowel out of his bed or our bathtub.

They’re not here when he’s waking up one and two o’clock in the morning yelling to the top of his lungs.

They don’t know how it feel to worry every second you’re not around your child not because the person you left him with isn’t responsible or trustworthy enough to keep.

But because your afraid of what he might do. Caring for Jaylen is a 24/7 with no breaks unless he’s in school.

And even than I worry about what he’s doing.

Although being his parent isn’t easy it has taught me so much.

Things I need to not only care for him but my other two kids as well.

Being his Mom is something I wouldn’t change for the world.

Because I feel like he chooses me because he knew I could handle it.

So, to the parents that may think the only ones facing challenges everyday you’re not.

To the people who’s on the outside looking in our lives are just like a picture it can make things look one way, but it could be saying an entirely different thing.

The best laid plans

My mum has always said that nobody should ever have a first baby. Much better to start with a second when you have all the relevant experience.

In a similar spirit of helpful but impossible advice I offer you a planning schedule recommended to be in place before giving birth to a child with Additional Needs.

You are most welcome.

Do not have a prior history of depression, or any health needs physical or mental of your own.

You won’t have time for them. No professionals will ever think of asking after your health, so really there’s no point.

Knowledge of law or education, preferably to degree level is highly advised. Without these the Local Authority may attempt to tell you that you are not entitled to expensive things, that you really need and actually are.

Career ambition for yourself is not necessary, you will be required to cancel meetings, work days and other plans at the drop of hat to fit in appointments, which mysteriously seem to congregate together within a fortnight.

You can of course cancel and rebook, but that risks being labelled a difficult parent. It won’t be written anywhere, but everyone will know you are.

Ambition generally is a dangerous thing, imagining you could go out alone or with a partner is optimistic, on some days going to the toilet alone will be completely beyond your capability. Believing your child deserves a place in society is also problematic. Being prepared to settle for less can lead to reduced emotional stress and, therefore, peace.

An independent income, preferably from a Trust Fund or inherited wealth will make your life easier and less of a drain on the state. It also ensures that you don’t have to discuss your family’s difficulties or finances with well-intentioned Charities. Think of the time you could save writing crowd funding requests!

Ensure that you are a very young parent, in peak physical condition and that this is your only child.

Be certain that you are an older parent that cares less and that this is at least your second child.

Be in an extremely stable relationship with a healthy, resourceful and emotionally aware partner.

Be a single parent with an incredibly supportive family and friends, you don’t have time for a relationship anyway.

Ensure your house is on one level with total accessibility to all rooms and hoists. You may not need them now but plan ahead.

Nurture friendships with young, fun but responsible people who can drive, and display a maturity beyond their years, not for themselves, you understand, but they have Personal Assistant potential.

Test your remaining friends by constantly cancelling plans at the last minute and taking weeks to respond to their texts. If they don’t like it, you may as well ditch them now.

This then is my recommendation to you.

I myself have opted for the all the gear and no idea approach to special needs parenting.

On most days I actually seem like I know what I’m doing, on others-well there’s always cake and cynicism.

To finish I’ll share another gem from the mothership.

She has always maintained that no matter how you parent, or what mistakes you make, as long as there is love in your home everything else will smooth itself out.

And, in this at least, I think she’s right