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Out-of-Control and Overwhelmed

Ceri-Ann Brown by Ceri-Ann Brown Additional Needs

Ceri-Ann Brown

Ceri-Ann Brown

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant gu...

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.


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.


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