We have two children; James, 16, Autistic, with Learning Difficulties and Epilepsy, I’ve written a lot about all that we learn about life through him; and Phoebe, 19, neurotypical and a young carer, this blog is all about what we learn from her.

The arrival of a second child into a family is almost always disruptive.

The first child has probably had a lot of things their own way in their life up to that point and suddenly there is competition for attention, praise and rewards.

Phoebe was 2½ when James was born, and it’s fair to say that she had been the centre of our universe during that time!

Recognising the challenges that she now faced, that any oldest child faces on the arrival of a sibling, lots of people remembered to make a fuss of Phoebe, to give her cards and presents, helping her not to feel overlooked or left out.

One of the cards that Phoebe received had some foam flowers on the front; she loved it and wanted to take it to her room with her when it was bedtime.

Several hours later she wandered into the lounge to declare “Daddy, I have a flower up my nose…”

Some investigation established that one of the foam flowers was now firmly stuck deep in her nostril, resulting in a nocturnal Saturday night trip to A&E, which was now filled with drunks that had got into fights, footballers who had tried to ‘run off’ their foot/ankle/knee injury and now realized it hadn’t worked, and a 2½ year old little girl with a flower up her nose!

After that unfortunate start, life for Phoebe got back into a regular pattern.

She became very attached to her young brother and enjoyed having him around.  When Phoebe was 5, James was diagnosed as Autistic and with Learning Difficulties; a difficult time for us as a family and one that we tried to protect Phoebe from as she had enough to deal with having recently started school.

Questioning

As both Phoebe and James grew up, however, it became more and more obvious to Phoebe that James was not like the brothers or sisters of her friends.

James didn’t talk, he didn’t respond to his name, he didn’t really play with Phoebe.

It would have been easy for Phoebe to have just become more distant from her brother, to ignore him, but instead she asked us questions, lots of questions…

“Why doesn’t James talk?”, “Why won’t he play with me?”, “He’s different to my friends’ brothers, why?”

Concern

As parents trying to come to terms with James’ diagnosis ourselves, it was hard to answer Phoebe’s questions, but we noticed that Phoebe wasn’t just asking from a place of being upset for herself about the differences she was noticing, it was out of concern for James.

Her love for James wasn’t dimmed by his differences, if anything it grew as her understanding of him grew.

She realized that James’ differences were hard for him too.

Caring

We noticed Phoebe becoming a caring, empathic girl, someone who always noticed when somebody else was upset, wanting to know what was wrong and looking for ways to help.

She became a staunch advocate for other children with additional needs too, standing up for them if others were mocking their disabilities, taking it personally if someone said unkind things about other disabled children, campaigning for equality for all.

Enquiring

Phoebe’s questions continued, became deeper.

She wanted to know more about Autism, about what it means to be Autistic.

She has an enquiring, inquisitive and searching mind, never resting until she has the answer to her questions, never settling for second best.

Supportive

She continues to care for James as well, looking out for his needs, learning a little sign language to help communicate with him better, sitting next to him at the dinner table and being the first to make sure he is using his cutlery, not his fingers, to eat, and making sure he asks for more, doesn’t just help himself from someone else’s plate!

Phoebe has always been happy to childmind James from the time when she was old enough, and even before then would tell us that she would tell the childminder what to do!

Selfless

The older James got, especially as puberty hit with all of the hormonal changes that brought, and then with the arrival of Epilepsy in 2017, there were many disruptive times.

Days when family plans suddenly changed, holidays that had to be cancelled, an increased focus on meeting James’ changing needs.

Phoebe has been magnificent throughout, always understanding, being selfless, still helping us to care for James.

Striving

Phoebe has learned not to settle for second best, but to strive for more.

She has shown this in the ways she has coped with setbacks in her own life, always emerging stronger and more determined.

She has shown this in her support for James too, always pushing him to do more for himself, and rightly calling us out when we do things for him that he is capable of doing.

For Christmas, Phoebe gave me a whisky glass with an inscription on it, a quote from one of my favourite historical figures, Winston Churchill, “My tastes are simple, I am easily satisfied with the best.”

Phoebe always strives for the best, for herself, for James, for our family; her gift to me is an excellent reminder of this.

Resilient

She might have chosen another of Churchill’s quotes, a quote which summarises how she has taught us so much, how her character has been formed in so many positive ways by her life with James and how this has rubbed off on the rest of us too.

How we’ve become more resilient as a family, supported by our wider family and many friends, as well as our faith…

“Never give in. Never, never, never, never – in nothing, great or small, large or petty – never give in, except to convictions of honour and good sense.” Winston Churchill

Phoebe continues to inspire us…

She is in the process of setting up a small business to provide fiddle/fidget boxes to churches and schools to enable them to support children and young people with additional needs better… and she delights us every day in the ways that she has responded so positively to the ‘different’ life she has had so far as the sister of a boy with additional needs.

She’s come a long way from that little girl with a flower up her nose, and we are immensely proud of her!

I wanted to write a post about mindfulness and special needs parenting.

I have so many thoughts and opinions about it, but have struggled to filter it all into something that is both interesting, and coherent. So instead I wanted to write about control… and how we manage those feelings of being out of control.

I tried to research the issue of mindfulness and all I yielded in relation to SN parents and mindfulness was an existing Firefly blog – everything else was geared towards teaching SN child mindfulness, not their parents.

There is little to suggest mindfulness even works if you’re in a situation that exposes you to chronic stress almost daily.

All you can control is how you react to those stressors and if you can put a buffer between the stimilus and your reaction.

My biggest anxiety feature is that I often feel like I have no control over my own life. I have observed in many other families like ours that this is often the case for them too.

It manifests itself in so many different ways for me, depending on the situation and my level of sleep deprivation.

For example, recently our household has been more sleep deprived than usual.

The return to the school routine, the exposure to more cold viruses, changes to meds, and various other things has meant many sleepless nights for us.

Amy’s sleep routine is currently to awake for the day at around 2-3am and expect full attention.

It isn’t possible, I simply cannot do it.

If I do allow it then we will get stuck in that cycle and it isn’t good for any of us.

If she does sleep – then she is making unusual noises and we are waking with a startle to make sure that she is breathing okay and not having a seizure.

When I’m tired (which is all of the time in varying degrees) I can be entirely non-reactive… any challenges that are thrown my way are met with absolute dismissal.

I resign myself to a zombie like state and work on auto pilot, completing tasks with minimal emotion.

My child can be mid meltdown, swinging and thrusting her legs to kick me in the face as I try to change her nappy… and I will silently move her back to a safe position over and over until the task is done.

In spite of my exhaustion I persevere – I have no other choice.

When I eventually become more lucid, I reflect on this time and feel guilty that I wasn’t “there” for her and interacting properly.

Or; I am over reactive.

A challenge will present itself such as “you need to take your child to hospital to be checked over” and there will be an outpouring of self righteous and emotional ramblings.

I will get hot, I will cry, I will judge blindly, I will complain… I will act a bit like a toddler who is not yet able to regulate their emotions.

It comes over me like an unstoppable force, like I am possessed by the feelings that encompass me.

My free time, which is very rare – has suddenly been taken away from me.

I have to cancel plans, rearrange my personal appointments, and unexpectedly spend many hours in hospital.

Mindfulness speaks so much about living in the moment. But sometimes those moments are intensely stressful.

When your child is enduring a prolonged seizure – those are the longest moments of your life. This is a moment you truly do not wish to feel and be in awe of.

I try when possible to enjoy “the moment” when things are calm and going okay.

I have learned a new appreciation for “normality” and the mundane. My favourite answer to what have you been up to is “not much.”

I don’t seek drama, or interest… if we all make it through to bed time safe, and at home, then that’s a huge win for everyone.

Every attempt at making plans over the last few months has been entirely futile.

Each time we miss something like a family Christmas dinner (thanks epilepsy), the last week of school (thank you influenza B) or a social gathering (thanks unexplained neurological irritability) it makes me want to just not even try.

It makes me feel like sitting in our house, TV on, hospital bag packed just in case, and avoid the disappointment.

If we don’t commit to something… life can’t deny it to us.

I feel out of control in that any dietary or medical decision I wish to make for my child has to be authorised by someone who isn’t myself.

Whilst I understand this, I don’t enjoy calling our GP to switch back to our old formula as our current trial isn’t working to then be told they need the dietician to request that.. not me.

I don’t like going on a day out and my child screaming incessantly until we are forced to leave… again.

I feel out of control when the seizure won’t stop and her breathing gets bad.. and before I know it I am bundled to the back of the room watching people help my daughter fight for her life.

I feel out of control when I make nice plans and get the call “we are waiting for an ambulance.”

It can make you feel like you are on call. It makes you dread every phone call. It makes your heart beat faster and harder than it should, waiting for that call.

It makes you watch her every movement when she’s with you, hoping desperately that things stay OK.

It makes you scared to commit to plans, it can make you seem a bad friend.

I feel out of control when I want an adaptation or piece of equipment but am told no.

Any small setback can be the icing on the cake and send me into a panic attack on a bad day.

I can appear like a control freak in my desperation to cling to those little things I do have jurisdiction over.

I can be fussy about timings, locations, and other aspects of a trip. It can make me seem awkward or bossy, but actually it’s a comfort to me and I need this.

So what does everyone else do to feel more in control?

For me here’s a few examples:

Pre drawing the next days meds.

This makes me feel that whatever the day throws at us… at least we have some level of prepararion.

Not all of the meds can be pre drawn, but it’s good to get as much done as possible. Meds aren’t a job you can miss when you’re tired like washing or doing the dishes.

So if life is forcing meds into your life… control how you go about doing them.

Trying to respond wisely instead of blindly to stressors without transforming into a lifeless unreactive blob.

Easier said than done. But I hide my wailing crying stressy anxiety from Amy quite well. How can I expect her to be well adjusted and not emotionally reactive if she’s exposed to it constantly?

A dropped yogurt on the floor? No problem. Breathe in deep, no need to cry, clean it up and move on.

Re-organising cupboards/drawers.

I don’t always get time to do this, and I am often too tired. This is a job that only gets done when things are going relatively well.

It feels great to get rid of some clutter to charity, or ebay and to have more space.

There is a huge lack of space in our equipment filled home, so any efforts at tidyness are a visible reflection of how in control I can be.

There are a lot of things I wouldn’t choose to have in our house, but have to… like for example many boxes of tube feeding equipment. So it’s nice to have some choices!

Controlling the audio around me.

Anyone who knows Amy will know how dependent on music she is. Specifically nursery rhymes.

Most aspects of our day feature an audio of either her iPad, or me singing. Sometimes at night when the house is silent I have ringing and beeping in my ears… the silence can be deafening.

So when she is at school I make an effort to have my favourite music on at just the right volume.

I don’t handle loud shops or cafes very well and am known to entirely dissociate from conversation when it gets too much.

So being able to control my environment when I can is a huge deal as so often my life is uncontrollably loud.

Making the bed everyday.

It’s only a small thing. But anyone with depression will tell you that actually this is a huge achievement.

For some people, if that’s the only thing they do that day, it’s a massive accomplishment.

When I make my bed everyday, I feel some level of organisation in what otherwise is an extremely chaotic and unpredictable life.

I don’t have the choice for it to be the “only thing” I do that day.. not many people do… but it’s at night to retreat to a nicely made bed.

Getting outdoors.

It doesn’t “fix” your mental health issues, but it can help put some fresh air in your lungs and force you into a different perspective, even just for a short while.

You can choose which path to take, you are in charge of this journey, even if every other journey is laid out for you.

Reflecting on positives.

This is an obvious one. But sometimes amidst the clouds of your gloomy disposition – you can lose sight of how far you and your little family have come.

I sometimes sit and go through photos on my phone and smile to myself at those nice happy moments.

Reading.

I have recently got back in to reading in a big way. I find I am either not into something at all, or utterly obsessed.

Reading is escapism, and I can choose where to go for that escape.

Having hobbies is hard.. it can be demanding on time, it can be expensive, or you can simply be too depressed or fatigued.

But reading is there when you want it, and when you don’t. Reading doesn’t mind.

I could go on and on… but these things are all very personal to the individual.

We all have our own coping mechanisms. I would be interested to hear about other people’s experiences.

There is so little we have control over sometimes, and it can be debilitating… but finding a healthy coping mechanism really is key.

I have been wondering recently if it’s just me or if most parents feel that with New Year comes some New Battles.

Or New Year same old battles?

In my world, everything is a battle.

And it’s funny because when I talk to friends or they come and visit and see some of Ethans new equipment, they reply with “Well, that’s brilliant, that didn’t take too long to get either, did it?” And they mean well.

They really mean well but nobody wants to be that negative ‘friend’; God knows it is hard enough to keep any friends once you step into my world, so I normally respond with a nod and a smile.

Inside my head I am screaming that it took me a friggin year and a half, a dress size (up or down) and it’s still not suitable but it’s all they could source.

I used to tell those involved with Ethans care that things will go downhill once Ethan reached a certain age.

I told them this as a way to prepare myself and to try to get in place equipment Ethan would need before he actually needed it, if that makes sense?

This thinking and talking only benefited me. It did indeed prepare me for the decline that was always going to come with Ethan but that is all it did.

Nobody involved in Ethan’s local care ever really understood that this little whirlwind in front of them, who was screaming a song from the top of his lungs would one day lose the ability to understand, speak, walk, eat …

We are here in that ‘one day’ now.

Despite all my talking and my belief that it did help me, I still struggle with the little boy in front of me compared to the little boy of years gone by.

But, I ain’t got time to feel all that in my day to day as I am sure plenty of parents like me understand.

I have to battle.

I have to battle my innermost heartbreak just to get up.

I have to battle sleep deprivation daily.

I have to battle the stress of everything that goes on in my mind and heart daily.

I have to battle anxiety just enough to be able to smile.

I have to battle with all the services, the city council,schools, often doctors offices and so much more on an almost daily basis- not all for Ethan either as I have two other sons.

..And I am not the only one who battles daily like this.

There are thousands of families who have to battle to get their kids a school place,the right education, their basic needs to be met.

Don’t even start me on Ireland’s idea of disabled toilets, that in itself is a battle the whole of Ireland should be concerning themselves with.

Battle is a funny word because it implies someone will win.

These battles we fight- no one actually wins.

No one walks away feeling like a winner; most parents feel horrible having to battle for help and supports that their child needs in order to live, in order for them to enjoy the simplest of things in life like a safe bed to sleep in.

Just before Christmas we were finally given the green light for a sleep safe bed for Ethan.

I didn’t feel like a winner.

I felt sad.

It was and is a stark reminder of how far Hunter Syndrome has progressed within my sons body and mind.

I felt that battle was pointless as Ethan needs a safe bed, I felt it was time and energy I didn’t have to spare wasted on something every single person in this world needs – a safe place to sleep.

This New Year for me means more battles. Some old battles and some new ones.

We physically don’t have the bed yet but I am expecting it any day now…

A battle I have been battling for almost two years is an extension for Ethan.

And I will be totally honest, I started the process a whole year before Ethan really, really needed it, I did not want an emergency situation on my hands but…alas…here I am.

Ethans ability to walk has decreased so much so that I have no choice but to carry him downstairs.

We toyed with the idea of a stair lift but Ethan doesn’t like swings or anything that moves as suspiciously as a stair lift might.

He’s unsteady as it is,so the thoughts of strapping him into a stair lift not only sets us up for another unsafe situation but one that is likely to scare the crap out of a little boy who has already gone through too much.

My husband carries Ethan to bed each night and each morning I carry Ethan down the stairs.

This is an accident waiting to happen but no matter how often I ring, or how many letters of support I produce our extension is still not coming any time soon.

It is a battle I am not willing to walk away from because Ethan needs to be safe in his home.

I should not be putting Ethan and I in danger in order to get out of his bed and down the stairs. Ethans current bed is two mattresses plus a makeshift safety bar along the side to keep him from falling out.

It does mean that we’ve to be over him and try to get him up in our arms in one swift move, a move I have not mastered at all.

Ethan should be able to have a shower in his own home too but that too is a battle as his bathroom is too small for the equipment he now needs and the amount of people it takes to shower him safely.

Respite thankfully have a suitable shower so Ethan does still enjoy a shower there.

So, I will battle on.

I will be told over and over about budget and waiting lists; and I will repeat myself over and over about how time is something we don’t have the luxury of.

I will be told too that Ethan will get his extension when they can cross the T’s and dot the I’s .

I’ve been told this since this Summer; it sure takes a long time to dot some I’s and cross some T’s.

So, I will battle on.

It is always a battle.

And when they knock the wall and finally begin, I won’t feel like a winner. I will feel sad that my 16 year old son requires all this extra space and equipment.

And there will always be a certain sadness that we are even in a situation where we couldn’t provide our son with all the care and needs he requires without help from our services, government and city council.

But, like everyone else in our circumstances we will battle on this New Year and every new day that we are presented with.

What about you, what are you battling this New year?