I Would Be Lost Without Mum: Special Needs Parenting

However, I would be lost without mine.

It wasn’t always this way.

Growing up we weren’t close, butting heads rather more often than not. Too similar to each other my Dad said.

But everything changed when I became a mother… while she hadn’t enjoyed (so she claims) the role of Mother herself, she loves being a Granny.

Sam was her second grandchild, my gorgeous niece Daisy had been born a couple of years earlier, but for all anyone could guess Sam was the first and only grandchild, the way he was adored!

It was Mum who packed her bags and came to stay with us in the early days when I was in the depths of postnatal depression; it was her who cooked and cleaned, ensuring that all I had to focus on was Sam, and recovering.

She knew first hand the devastation post-natal depression can cause, and was adamant that she would stay as long as we needed her.

On that awful morning in August 2011, when my boy experienced his first seizure, I turned again to Mum.

Although they live over 70 miles away, they dropped everything to be with us at the hospital. Mum held my hand tightly while the Dr’s explained what was happening.

It was she who physically forced me to leave the ward to get a coffee and allow me to break down in private.

Over the years, she has been my first point of call for all things, be it advice on managing a situation at work, helping to care for Sam and learning how to do his essential physio/therapy/care/feeding etc.

She has always been there, ready to support and help, allowing J and I to juggle work with caring for a very poorly child by taking early retirement to support us, and be always being available at the end of the phone.

I am incredibly proud of my Mum.

I couldn’t do half of what I do if it wasn’t for her; the way she cared for my Dad in the last years of his life took a toll on her but brought us even closer through our shared experiences.

She is a bright and vivacious soul, loved by her children and grandchildren, and I am very much aware of how lucky I am to have her.

Three Ways to Help Support the Sibling of a Special Needs Child

The guilt at having to say once again I could not come for her was awful.

As I took the call I was sitting with her brother in a hospital ward as he came out of anaesthetic.

Other times I have not made her school assemblies because I have had to attend an urgent meeting for her brother.

After school clubs are something she can rarely go to either as her brother’s routine can not be changed.

These things affect me deeply but more importantly they affect HER.

So how do you support a sibling of a child who has complex needs?

Here are three ways I try to support my daughter as we walk together through life with her disabled brother.


I need to make time to just listen to my daughter.

She needs to know she can talk openly about her anger at me or her brother, her upset at seeing him sick, her worries for the future or even just about what is going on in HER life.

I need to give her my ears AND my mind and truly focus on her as she talks through experiences and concerns about living with the complexities of life with a disabled sibling.

There are times when listening actually involves holding her or just wiping her tears away gently.

By listening to her I am showing her that although her brother consumes so much of my life there is a place in my heart for her and I care deeply about her.

I need to do this daily even if only before bed or while driving the car but I also try and make sure that once a week I sit down with her and give her the mummy time she craves and needs so much.


Last week I asked my daughter in passing how she had got on with her recent spelling test.

Her head dropped and her voice quietened as she told me she had only got seven out of ten that day. I was disappointed as she was capable of more.

Then I paused and realised that she had done her homework alone that week because her brother had struggled and we had not practiced her words even once.

So I held her hands, lifted her little chin and said

‘Sweetie…that means you got seven full words right! Do you know how brilliant that is! I am so proud of you.”

Siblings need to know they are noticed and they matter even if they don’t achieve what we think they should.

We need to be aware how much of an impact life has on them and encourage them in whatever they do well.

We need to tell them how precious and special they are boost them as often as possible.


You are not a failure as a parent if you start to notice the sibling or siblings of your special needs child needs help.

Their behaviour may change, they may become depressed or they may struggle socially or academically.

If you have spent time listening to them and encouraging them but they still need more support that does not make you a failure.

There are places out there like young carers and befriending organisations who care and who have the right resources to support siblings.

Having a brother or sister with extra support needs affects the entire family and there is no shame in siblings needing time out or respite from the home situation.

It is to everyone’s benefit that siblings have the opportunity to be typical children or teenagers too.

Siblings to special needs children are very precious.

They cope with more than so many others yet they have the potential to change society through teaching tolerance, love and acceptance.

For parents siblings bring hope and joy when things become difficult, they give a reason to keep going through the toughest of times and they restore normality in chaos.

They are the rainbow at the end of the storm and the bird song at the start of a new day.

When the school called about my daughter while I was with my son in hospital it was tough and my heart broke.

Life can be difficult but I really don’t know what I would do without this beautiful smile, tender heart and precious arms that wrap around me daily reminding me life is precious and there is always a new day tomorrow.

Two Steps Forward, One Step Back

The work will give him his own bedroom for the first time, and will mean we have a downstairs bathroom with bath and level-access shower for him, together with hoists to move him safely and easily.

I’m so excited that after years of feeling like we were banging our head on a brick wall things are slowly moving forward!

But it is a slow process. Most people assume that once the Council have said the plans meet the requirements for the disabled person that work will get underway quickly.

Sadly that isn’t the case – we now have to get planning permission for the work as an extension will be built for Sam’s new bedroom. So that could be around another 8 weeks.

Then we need to discuss with our architect where power points are needed (we need so many for all his equipment), where water and gas need to go, etc., then we have to get builders quotes in to find out how much of the work the Council will fund via a disability facilities grant.

Only *then* can we even think about getting work started…

I cannot even begin to tell you how exhausted I am by this whole process.

As with the majority of things disability-related, nothing is ever quick or simple.

The services in place to support families and children are woefully inadequate, and the majority of families end up, just like us, waiting years for essential work to be done.

On the plus side, my boy will have his own bedroom!

That is a massive thing for us all, until now he’s slept in the same room as us for safety; and because we can’t get him upstairs safely for the past 2 years we have slept in what is actually our dining room.

But I’m also terrified. For over 6 years my little man has slept less than 4ft away from me.

We have been immediately on hand to help him when the seizures hit, or when his monitor alarms (often these days because he’s kicked the probe off his foot, but you can’t ever ignore it… just in case).

When he’s upset it’s a simple matter of reaching over and gently comforting him until he settles again.

In the future, he’ll be across a corridor from us… not far in the grand scale of things at all, but it makes me feel sick with worry that we’ll miss a seizure, won’t be there fast enough, and so on.

Of course, the reality is certainly that he and we will be absolutely fine; once I’m used to him being in his own room I doubt I’ll so much as blink at the idea, but for now its overwhelmingly frightening.

That poor child will have so many video monitors, SATs monitors, etc. he won’t be able to hiccup without alerting us!

That and I strongly suspect I will be sleeping on the floor of his room for about the next 20yrs…!

What Is It Like to Parent a Child With Epilepsy?

Brody’s epilepsy makes me question a lot of things. The smallest of movements, memories pre-diagnosis and even laughter.

It can really play on your mind when you’re not sure if something is a seizure or not – because some seizures are easily missed.

And they can leave a lot of damage in their wake.

We discovered that Brody was having seizures when he was one years old – and this was only because they were clonic tonic ones and very noticeable.

But because there are so many different types of seizures, I will always wonder if Brody had them when he was much younger and we just weren’t aware that he was having them.

Even now he is 5 with an epilepsy diagnosis, I still find myself questioning if a quick eye roll, a strange movement or laughing in his sleep is something suspicious.

And because he is primarily undiagnosed, there is a part of me that sometimes wonders if epilepsy has caused his learning disability. I suspect we’ll never know.

Laughing was never something I ever associated with seizures.

Then late one night when I was heavily pregnant with our daughter, Brody was asleep next to me and began laughing hysterically.

I turned round to face him and he started having a clonic tonic seizure (I managed not to go into labour).

A month or so later, he was on our sofa laughing and the same thing happened.

Hysterical laughter followed by a clonic tonic seizure.

Something clicked and I remembered the first time he was admitted to hospital with seizures as a baby.

He’d had 5 that day and it was about 11 o’clock at night and he was in his cot, half awake. He began laughing and before we had time to question why, we were pulling the emergency cord and doctors and nurses were flying in.

When I thought about it, Brody had laughed before a lot of his seizures.

Naturally I did what all us Mum’s do – Google.

And from there I found out about gelastic seizures, which typically begin with laughter that is empty and hard to describe. Following the laughter, the person might then have another type of seizure.

But the laughter can be a seizure on its own.

I felt sick to my stomach because it all sounded so familiar. As well as before some clonic tonic seizures, Brody has always laughed without explanation.

And although inappropriate laughter is common in children like Brody with autism, he laughs a lot in the middle of the night, and has done since he was a baby.

He is also prone to having seizures at night rather than in the day time.

Sadly I know I’m not alone in having the worry of SUDEP (sudden unexplained death in epilepsy) playing on my mind when he sleeps.

I have plenty of videos of Brody laughing at night on my phone going right back to when he was a baby, because I had thought it was just something he did that was cute.

I took them to his neurologist who agreed that it was unusual and an EEG followed, then a video telemetry EEG and then an MRI to check that he didn’t have hypothalamic harmartomas, which can cause gelastic seizures.

The MRI didn’t show any evidence of them and as usual the EEGs didn’t provide any information – something that we’re used to happening, despite Brody having a diagnosis of epilepsy.

So we’re left in limbo, which is something we’re sadly used to having a child with an undiagnosed genetic condition.

Brody still laughs most nights and we listen and watch his monitor not knowing if he is laughing in his sleep or if it’s part of his epilepsy.

Brody’s neurologist can’t say one way or the other – he just says that it’s suggestive of gelastic epilepsy.

Unfortunately, gelastic epilepsy isn’t easy to diagnose. We were offered the option recently of altering his medication to see if it stops the night time laughter but we have decided not to for now – because what if it’s not?

I hate the way epilepsy makes you question things that could be perfectly normal with your child.

You can’t help it because a seizure can be something so subtle and you don’t want to miss it. You want to know because you are all too aware of the harm they can cause.

The loss of skills.

The regression.

But sometimes it’s just so hard to know if it’s a seizure or not.

My Top 5 Beauty Hacks for the Special Needs Mum on the Go

Our appearance has slipped way down in the list of priorities with makeup becoming a thing for rare nights out only.

Grey hairs are sneaking through at a rate faster than we can possibly make it to the hair salon, and those unruly eyebrows seem to have a mind of their own!

Here I’d like to share with you a few short cuts that you might find helpful, to save yourself time and feel slightly more confident about stepping out of the house!

Batiste Dry Shampoo

Gone are the days when I could spare half an hour of my own time to shampoo, condition, blow-dry, and style my hair.

These days it is more a case of sticking a beanie hat on top of my greasy, lank mop and hoping I don’t bump into someone I know.  Then I discovered Batiste dry shampoo.

This product actually prolongs the time between washes, and leaves your hair with a fresh aroma and some refreshed vitality and bounce.

When your hair is ‘on the turn’ and about to cry out for a wash, simply spray Batiste into the roots and massage in with fingertips.

This 30 second procedure will buy you another day or two before you need to wash your hair.  Best of all, unlike your standard dry shampoo, this product comes in a range of colours.

As a brunette, I use the ‘dark and deep brown’ variety, and unlike other dry shampoos, this does not leave your scalp looking like you’ve doused yourself in talc.

The only slight downside is the brown powder that remains under your fingernails and round the rim of the bath or shower after you’ve washed it off.

W7 Cover Up

I am finding that those evil little grey hairs seem to be showing up more and more these days; perhaps it is the stress and anxiety, or simply a sign of my age!

I am finding that I have to get my hair dyed more and more frequently, but the reality is that I simply do not have two hours to sit in a salon every two months!

This product is no miracle cure for grey hairs but it does provide you with some temporary respite from those pesky little intruders.

You simply apply it like a blusher to your roots, and it takes just a few seconds and no skill whatsoever.

The product is available in a range of colours and I have found that it lasts overnight without staining the pillow or your scalp.  I found it online at Amazon.


My favourite phrase at the moment is: “To be honest I’m just winging it, life, eyebrows, everything”.  It just about sums me up!

I’ve got about fifteen thousand things that take priority over plucking, or pencilling-on my eyebrows every morning.

On the rare days that I do attempt this task, I seem to abominably fail in the art of symmetry or precision.

However, with a bit of practice and half an hour set aside one evening, this product can save you considerable time!

Wunderbrow is a revolutionary ‘permafix’ gel that contains hair fibres specially treated with pigments that fasten onto skin and hair.  It will stay put for a few days, or until you decide to remove it.

It claims to only take 2 minutes to apply although it took me slightly longer the first few times, but once you’ve nailed the technique it’s relatively easy.

Carmex Lip Balm

Gone are the days when I meandered down the beauty aisles of Boots looking for my perfect shade of lip gloss.  These days I prefer just to have moist and healthy lips.

I simply cannot leave the house without my Carmex and it is by far my preferred brand of lip balm.

Available in a range of aromas, and in tubes, sticks and pots, you are spoiled for choice.

Boots No. 7 Primer

I have to say that the one cosmetic that I could not live without is foundation.  It works wonders at disguising the dark circles and blemishes on my face.

However, foundation often does not last the day.  I have found a brilliant product that fixes this problem!

Boots No. 7 Primer works as a base layer below your foundation and goes a long way towards keeping your foundation in place throughout the day.

It is easy to apply, and only requires a small amount so the tube lasts a long time.

It adds just a matter of seconds to your morning routine but can buy you a few extra hours of flawless radiance.

What This 8 Year Old with Autism Wants To Do for her Disabled Brother

We are very blessed that not only is our local park just around the corner, but it has also recently been rebuilt so both children gain so much from it.

There are of course lots of things they are unable to access like the zip slide and spiders web as they both have additional support needs but they enjoy an accessible roundabout, a large see-saw, some rocking and spinning equipment for younger children and of course a slide.

They are happy.

Or so I thought.

This morning I was walking my daughter to school and she was talking to her friend about the park.

She was telling her about the slide and the see-saw and the roundabout. But then she paused and sighed.

“There’s something missing”, she said to her friend with sorrow in her eyes, “I wish there was a swing for my brother. He is too big for the baby ones and can’t do the normal ones and I saw him look at me on the swing and I know he loves it too.”

“I want to buy him a swing for that park”

And at that she began thinking of fundraising ideas in order to make our public park more accessible for her brother with complex needs.

She asked me to get a picture of the swing he needs and prices.

At 8 years old and having autism herself she is so serious about this.

With two baby swings, four traditional flat seat swings and a basket swing already in the park she just cannot understand why there is not one like this for her brother…

She is right.

We pay lip service at times to inclusion.

We put token things in place like a wheelchair roundabout and feel we can tick the box to say we are ‘accessible’.

But what if what that isn’t actually what disabled people really want?

I need to sit down with my 8 year old tonight and explain that even if she fundraises for a swing there is no guarantee it could go in the park. That will be hard for her to understand.

She wants her brother to be able to access everything she can and she is right.

I don’t want to change that determination or thoughtfulness and I am proud of her for caring.

I had plans to take the kids back to the park tonight.

I thought it was a great place for them but my 8 year old daughter with autism has taught me to look at things differently.

As I will push her in the swing tonight watching her brother flapping and laughing I will realise that sadly so much in life will never be accessible to him.

Yet, I also know that his sister will do everything she can in life to help change that.

That is the power of sibling love.

Actually you know what…let’s make this happen…I am going to encourage her to fundraise AND in the meantime I am off to contact everyone I can to change this.

If an 8 year old wants to change the world for her brother…I should be helping her.

It’s too easy for me as an adult to become cynical and think nothing will change.

I have battled so much for my son and almost get to the point of accepting little because that is all I get used to getting.

My daughter is right though. Her brother loves a swing and why should he not have one!

My 8 year old wants to change things and I am going to help her achieve that.

Watch this space!

Lidl trialling the GoTo Shop Trolley in the UK

Will Lidl be the next big retailer to roll-out the GoTo Shop trolley?

Tesco, Asda, Sainsbury, Dunnes Stores and Morrison’s are already making shopping trips easier and more enjoyable for special needs families living in the UK.

This latest trial in one store could see Lidl be the next big retailer to really make a difference for special needs families.

The GoTo Shop trolley is an adapted trolley that provides adjustable lateral and head support together with a five point harness and an open front for easier transfers from wheelchair, car seat or special needs buggy to trolley.

If you’d like to see Lidl ‘roll-out’ the GoTo Shop trolley across all its stores then download the campaign leaflet and hand it in to your local store.

Did you know? 

The GoTo Shop is now available in the United States! Join our US campaign by downloading this leaflet!

Special Siblings

I am immensely grateful for the relationship that my four young daughters share.

I never tire of seeing them play with each other. Those little acts of kindness and sweetness. The sharing.

Don’t get me wrong- in a house full of girls there are plenty of cat-fights! Squabbling, bickering, little nudges, mean words and pulled faces.

Sometimes they drive me crazy! I wonder are boys like this too?!

But on the other hand, I do relish the times when they help each other, share their things and stories, give advice, play and sing and dance together, and just flat out enjoy each other’s company.

Ah, those sweet moments together, I wish I could remember and catalogue each one in my mind’s eye.

Thank goodness for photographs and short video clips to capture some of those precious moments.

The older girls really have been so good with their little sis with complex needs.

They’ve learnt so much about life, about disabilities, and about love, with the experiences Brielle has brought.

They absolutely dote on and adore her!

She’s now 6 years old, and they are as gentle and caring with her as they were when “baby ‘Elle” was a tiny, fragile baby.

A few days ago, my friend commented on how obvious the girls’ pure love and devotion for Brielle was.

She said she could see their faces and eyes light up when they were talking and playing with her.

That made me so proud and happy as a mama!

My girls are definitely more aware of others with special needs and disabilities now, since Brielle came into our lives. I’d say they are so much more sensitive and empathetic.

They understand the need for adaptive equipment, special support, alternative communication, artificial feeding, the list goes on.

I’m so glad that I have such great little helpers to daily infuse fun, laughter, love and companionship into our lives.

Brielle would not be the happy, engaging, inquisitive girl she is now, without the love and guidance of her big sisters, I know that for sure!

They would fight fiercely for each other. And so much more so for Brielle as she can’t fight for herself oftentimes.

Yes, siblings are the best. Happy National Siblings Day!