The Things I Do Everyday

While I do get up planning to be a mommy superhero each day to my child with special needs, and do lots of amazing things each day – like assist my child with learning new skills, being his access to all physical activities he unable to independently master, and juggle physician, therapy and rehabilitation appointments – I am still conscious and aware of nurturing my own self-happiness with days that are filled with a mixture of both challenges and blessings.

I know that I’m a stronger parent if I am practising great love and devotion from a strong place of health and happiness.

I make a conscience effort to practice these three things everyday in order to be the best special needs parent that I can be:


The richest, happiest and most productive lives are characterized by the ability to fully engage in the challenge at hand, but also to disengage periodically and seek renewal” – Loehr and Schwarz

This is one of the biggest things that I remind myself to practice and do daily. 

Being a special needs parent is exhausting on so many levels. The demands that are placed on us are difficult. We can’t just be “mom” or “dad.” 

We are our children’s secretaries, their voice, their therapists, their doctors, and advocates. 

We are care providers, nurses, and teachers. 

We wear multiple hats in a single hour let alone what we attempt in an entire day.

Our days are filled with endless challenges and fighting battles on behalf of our children. 

We put on our imaginary war gear and head into IEP meetings while smiling and carrying a box of donuts to demonstrate we have a sweet side; we can send thirty emails in one day to a caseworkers and durable medical equipment providers asking for benefits and adaptive equipment; draft appeals paperwork in our sleep, still juggle nine loads of laundry, take the ailing dog to the vet, get dinner on the table, read four bedtime stories, and fix two wheelchairs that have a broken lateral and headrest. 

This can wear any special needs parent out super fast. 

Even faster on the days when the odds feel stacked against you and insurance comes back with five denials in one day, or you’re told your child’s therapy hours are being cut due to financial cut backs.  

While we can handle the best of challenges, it is essential to seek renewal so that we can refuel ourselves so we can go the distance long-term.

For me this often means I take long periods away from social media or emails, or outside distractions so I can refocus. 

I also take time to absorb the important things, like getting down on the floor with my child with special needs and taking notice of the sweet smell of his hair, feeling the depth of his laughter. 

Doing something spontaneous like going to the zoo on a Tuesday – just because we can, or devoting a day to no phone calls, therapy or appointments and having all of us spend the entire day in pajamas – just because we can.

Strive To Help Others

It is easy to become self-absorbed with the complications that special needs parenting can bring.

It’s a beautiful and easy distraction from things that are often beyond your control if you can be of assistance to someone else during their own difficult day and set of circumstances. This can be really simple.

You can pick up the phone to reach out to a fellow special needs mom to remind him or her that you are thinking of them, sending a note to help give advice on adaptive equipment or therapies, it could be doing a good deed anonymously, this really could look like anything as long as your intentions are to help someone else in some way.

There is no greater feeling than the act of kindness – and the reminder that we all can make a small positive difference.

This takes away from the drowning feelings and self-pity moments that special needs parents can fall prey to.  You can’t be sad when you’re making someone else smile.

Develop Strategies To Put A “Win” In Each Day

The fact of the matter is we’re going to lose more than we win when you have a child with special needs. 

This can make you feel like you are sinking quickly. 

Finances tumble down the drain, insurance denials knock you off your feet, losing government services burns worse than any wound from a hot oven, having therapists come in and out of your child’s life is a colossal drag, and doctor’s giving you nothing but continual doom and gloom predictions about your child’s future feels like the icing on a yucky cake.

This is going to look differently for everyone. 

But you can find ways to put “wins” in your day. 

Try working out for 30 minutes each day to a in-home exercise video, make a point to color each day with your child and help build their creativity, make an effort to take a shower by 8am every morning. 

Doesn’t matter what it is – find a tiny goal that is easy to make a personal win. 

You’re going to need that “win” when you reflect on a really hard and trying day. This “win” will become essential in balancing out the challenges.

Find something that you can do everyday that is going to help nurture yourself and make you the best special needs parent that you can be. You can do it!  I believe in you! 

Watching My Kids Gain Independence

My eldest of four daughters embarked on her secondary school journey a couple of weeks ago.

Much trepidation, anxious questions, queezy morning-tummies, new uniform woes, public transport logistics – some of you can totally relate!

I don’t know who was getting more worked up- her or me!

I tried to play it as cool and calm as possible, sharing with her encouraging tales of my own secondary experiences and joys.

But the truth was, she needed to just get out, get to her new school, and find some things out for herself.

I felt like I was suddenly letting slack on the string of the kite I’d been holding so closely.

But it has been good for her, and for me too. My 11 year old is growing up. She is entering a new phase of life and I need to nurture her where she is at.

Yes, independence leads to more risk, more uncertainty. But it is a necessary part of growing into an independent adult.

My youngest, now five, on the other hand, may never be fully independent. And that is ok. I’ll be here for her.

But I must celebrate every step she takes towards independence.

Sometimes her unique path towards independence is downright nerve-wrecking!

She has cerebral palsy and is not walking or able to stand independently for more than a few seconds.

But she is great at cruising the table, the kitchen counters, and more recently, she can pull up at a doorway and open the door!

It is hard to watch her struggle to balance on the handle, push it down, and try to pull backwards without falling over.

But we understand the need to let her try, gaining strength and co-ordination.

Anxious as we are that she is going to fall flat on her face.

We maintain a close distance to save if needed, but give her space to try.

Playing at the playground is another example of her trying to do everything.

Sometimes she even pushes us or our hands away, although without them she will fall right over.

She wants to climb, swing, slide, bounce, and DO everything!

I constantly feel that balance between protection and independence with her.

I want my children to feel enabled to grow in independence, knowing that we will always be here for them and love them unconditionally.

His Lack Of, “Danger Awareness”, Terrifies Me

We are helicopter parents (of the worn out, frazzled variety).

As he gets older, this danger awareness thing – well, to be honest it just gets more frightening.

He is taller and stronger and physically trying to prevent him from hurting himself – intentionally or unintentionally – can be really hard.

Cognitively, Brody just doesn’t understand.

He has no fear.  He has a high pain threshold and is clumsy due to his mobility problems.

Danger is everywhere.

The front door is always locked.

Cups of tea are put up high (very high – he can now reach the mantelpiece).

Stair gates are permanently shut – not only on the stairs, but the kitchen and utility room doorways too.

Cupboards that have dangerous products in them are locked, as are bathroom doors.

The TV and bedroom drawers are strapped to the walls.

We have foam padding on his bed, as he often knocks his head off of it.

He has a specialist five point harness car seat to keep him safe on car journeys as he pulls his arms under a regular seatbelt.

The list – it’s endless.

But for other people that don’t live in our world, it’s hard to understand.

My 17 month old daughter Sydney has a better awareness of danger than her four and a half year old brother.

It can be draining. It’s a never ending worry. A permanent weight on our minds.

When people come over, we have to work doubly hard to make sure that things aren’t left open or unlocked.

If we’re at someone else’s house – well, we just try to avoid going if I’m completely honest!

It prevents us from going out and makes me feel like a stuck at home parent a lot of the time.

I feel like we can only relax at home. Or when Brody is at his fantastic nursery, where the staff thankfully just ‘get it’.

This problem is at the forefront of my mind at the moment as it has been highlighted tenfold recently whilst on holiday away from our home.

At the beach, Brody will constantly try and crawl or walk into the sea. He won’t stand and paddle. And he’s determined to get in, even when you’re holding his hand.

At the parks we visited, he can’t climb ladders on slides so my partner carries him up.

I hate it though because he scares the life out of me!

One day when they were nearly at the top of the ladder, he was bending and arching backwards (one of his favourite past times).

And when he comes down the slide, we’re hovering half way down and at the bottom to make sure he doesn’t fall somehow. I almost hate going to the park with Brody and that makes me so sad.

He is just physically unable to do a lot of things and on the things we can put him on, he just frightens me so much.

Who knew slides and roundabouts could be so terrifying? And why do the activity frames with slides always have lots of open ends with huge drops?

When he is in hospital, doctors and nurses don’t always get it either.

He is too big for cots and those high up beds on hard floors? Nope. Nope. NOPE!

So what we do, depending on which hospital we are in, is put him on the parent camp bed or ask if we can just have the bed mattress on the floor.  We always pray that we can somehow have a room so that we can shut the door, otherwise we just don’t sleep.

We couldn’t trust him to be safe in a large ward room with open doors and other beds and equipment.

When I took him to nursery this morning, I thought I would see if he would maybe now stand by the car on our driveway whilst I put his younger sister in her car seat. Bad idea.

He ran (in his own unique way) off into the road before I could get her strapped in.

What I normally do is form a barrier between me him and the car, so I can get her in to her seat and keep him next to me.

She’s getting to an age where I hope she’ll be able to stand and wait soon thankfully.

When we arrive somewhere, I have to get him out first though, because I can’t carry her and help him out of the car at the same time.

It’s a simple thing that’s difficult.

It’s just all day, every day and it’s something we have to live with. But it’s hard.

I think strangers and even some of our friends and family might think we’re nuts!

I suppose it’s difficult for them to comprehend how vulnerable he is. He just doesn’t get it. They just don’t get it. And it terrifies me.

Attract More Customers by Creating a, ‘Space to Change’.

Research shows that in an average business, 20% of its customers will have a disability.

This group of people spend £80 billion a year.

Many of the 5 million people with special needs, can’t spend their money where they want to because there is no suitable toilet for them to use.

Restaurants, coffee shops, cinemas, department stores, shopping centres, supermarkets may provide a wheelchair accessibile toilet but without vital equipment including a hoist and changing bench these toilets are useless to a large group of people.

However, many wheelchair-accessible toilets in these locations already have the space needed – just 7.5 square metres to accommodate a hoist and changing bench.

“Hundreds of thousands of adults and children with disabilities need a carer to help them with their toilet requirements, and often also need equipment – a changing bench and hoist,” explains campaigner Samantha Buck.

“Even in my local town, I have been surprised to realise how many wheelchair-accessible toilets already have that space.

We just need them to also have a bench and hoist added: the changing bench is less than 2 metres long, and a ceiling track hoist takes up no space at all.

“In an ideal world, we’d like a full assisted accessible – Changing Places – toilet in addition to the standard wheelchair accessible facility, but that takes up an extra 12 square metres under British Standards.

Making better use of existing facilities, and turning them into Space to Change toilets by including an adult-sized changing bench and hoist is an acceptable compromise, which means families like mine can spend time doing what ‘normal’ families do – shopping, having a meal together, going to the cinema.”

Space to Change was developed by campaigners and leading disabled toilet solutions company Clos-o-Mat to bridge the gap between conventional wheelchair-accessible (Document M type) toilets and full-specification Changing Places facilities, to provide an acceptable alternative where space and/or cost is a limiting factor.

To join the Space to Change campaign and champion the need for benches and hoists to be installed in existing wheelchair accessible toilets get in touch!

Full details of the Space To Change concept, and the larger Changing Places assisted accessible toilet, can be found at

Clos-o-Mat’s website also includes full support data, including white papers, CAD blocks, video, technical specifications and typical layouts.

Uniquely, Clos-o-Mat offers, in-house, a full support service, encompassing site surveys, design advice, supply, installation, commissioning and subsequent service & maintenance.

Surviving Those Bad Patches

Sometimes you coast along in cruise control and you feel like you’re winning at this Mum malarkey.

You’ve accepted your child’s disabilities and the challenges that they might bring, and you just get on with life.

Other times it can literally feel like you’re walking against a hurricane force wind.

The smallest thing can set you on to a path of sadness, which can lead in to a bad day. Bad week(s) even.

Or sometimes stuff just builds up until you want to find the nearest hole and disappear into it.

A day off parenting (never going to happen) or an off switch for your brain would be handy (if only!).

This week, we’ve been feeling it a little – okay, a lot – as a family.

Our usually happy boy is becoming harder and harder to keep happy.

And it’s so hard – for us and for him.

We’re just back from a much needed holiday to our favourite place. Everything we did, we did it for our children. Just like everyone else.

Soft play, farm parks, adventure parks and beaches.

We tried so hard to make it an amazing time for them and yet Brody just wasn’t happy.

He had brief moments of course, the ones I captured on camera and plastered on social media – but on the whole, he was frustrated.

My other half got a black eye (kicked in the face whilst on the bed) and his glasses pulled off numerous times.

A plate got smashed in a café.

We struggled with Brody’s lack of danger awareness and physically stopped him from doing things – like walking in to the sea – that would harm him.

His sensory processing disorder was in full swing as he gagged at his favourite foods.

And sadly his legs were tired and sore from being out and about a lot due to his hypotonia and hypermobility.

We tried to keep positive. To channel that SEND parent PMA. And for the most part, we did.

But we came home admittedly a little deflated that it hadn’t gone to plan and pretty exhausted from it all.

That first night home, we went to bed and Brody broke a ten month seizure free spell (that we know of) and had two seizures.

We were gutted.

When Brody’s behaviour turns like this, it’s hard not to feel like a rubbish parent. Because what we want foremost is for him to be happy.

And that mummy guilt, it can really weigh you down.

It’s hard not to feel annoyed that things aren’t straight forward and envious of friends who have the life you pictured when you first saw the positive sign after peeing on a stick.

It’s hard not to feel irritated by moany Facebook statuses about first world problems.

It’s hard not to worry about the future.

Let’s be honest, sometimes it can be pretty hard to find the strength to turn around when you’re on that path of sadness.

Then, I think if we’re feeling it – imagine how Brody feels.

Frustrated that he can’t communicate what he wants and how he feels with us because he is non-verbal.

Tired from sore legs.

Struggling with sensory issues.

Annoyed at his little sister for taking up half of our time too, whilst at 17 months being able to do things easily that come so hard to him.

There’s that mummy guilt again. It’s not always easy. Sometimes you can’t gloss over life.

But I have to remind myself of that cliché – so far you’ve survived 100% of your worst days and you’re doing okay.

We’ll be okay – and if you’re on that path, so will you.


September is NICU Awareness Month

It is one of those things where if you have ever had a child in NICU then you are most likely all too aware of it as generally it will impact how you see the world forever from the moment you set foot in there.

I have no scintillating statistics to share with you all, nor do I have any amusing anecdotes or facts, but I do like everyone else have my own journey to talk about.

I don’t think that even half an hour passes where I do not think back to those probes, tubes, wires, monitors, machines, beeping that we encountered two and a half years ago….

My daughter was born full term after a healthy pregnancy.

Her heart rate slowed when I was in labour and I was rushed for a Category-A emergency caesarean section.

To this day that scar serves as a painful but also joyful reminder of Amy’s entry into the world.

The scar has faded but the whole area around it feels numb- quite a fitting metaphor for how I deal with the PTSD acquired from that time.

It happens less now, but at night when I go to bed, I sometimes almost feel all too real that sensation of being laid on a hospital bed and being whisked down a corridor for the emergency surgery.

As I move there are people shouting, people talking to me and asking me questions, my partner’s terrified face rushing alongside us.

I can see the ceiling of the hospital corridor – lights – ceiling panels – lights – ceiling panels. Breathe, breathe.

Must remember to breathe.

“Make my baby safe!” I scream in desperation, no idea what is happening. “Are you allergic to anything” asks the surgeon as we rush along. In my traumatised state “pineapple!” I retort, barely able to speak. Something we would look back on and laugh about when reading the birth notes months later.

“Ceri-Ann! Ceri-Ann!” I hear in a dulled but echoed voice.

My eyes start to open. I am hooked up to all sorts of machines, I am pumped full of morphine and feel strangely serene. “I am a robot now” I said as I woke up from the anaesthetic. Yet another amusing anecdote from that day.

“Your baby is seriously ill. She is fighting for her life. This. This. This doesn’t happen” said the senior midwife gravely from the end of my bed.

She looks devastated. A sobering moment.

I had thought up until then that they were just “preparing” to bring my healthy bundle of joy to me.

But no, this was real, this was terrifying, this was what I didn’t think happened to “people like us” (whatever the hell that meant).

We had a brief meeting with Amy. She was lifeless, motionless, covered almost entirely in tubes.

She was transferred to our city hospital for cooling therapy. She had suffered a lack of oxygen for eight minutes and acquired a serious brain injury (hypoxic ischemic encephalopathy – grade 3)

The next day I hyperventilated and screamed until we were transferred to be with her.

I don’t normally act this way – mother’s instinct had superseded everything else – even having just endured major abdominal surgery I somehow found the strength to rush round in a panic which was strange as I was entirely reliant on a wheelchair for days after that.

This is where our NICU journey began. 

Until we encountered this I had absolutely no idea such places existed, that such sorrow and such joy could exist side by side. The hopeful look in parents eyes as doctors deliver them information.

We were so vulnerable – we had no idea what was going on.

“She may not make it through the night” said the doctor. “And if she does her quality of life will be significantly compromised.” I stuttered on my words, still trying to make sense of what was happening; “is there any hope?” I asked.


I would lay awake, as would Phil – just staring at the clock, staring at the wall.

How had this happened to us? Why did our little girl have to suffer? Will she make it?

How on earth will we cope if she doesn’t?

Our days were made up of many visits from our parents who were so kind and washed our clothes for us, brought us food, tried to cheer us up. They were also made up of huge victories like when she did her first wee – proof her system was working!

The day they turned off the cooling cot, the day they lowered her oxygen, the day she stopped having constant seizures – each one of these things were absolutely huge for us and part of the many steps to getting her back home.

Aside from that, the other perks were gross microwave meals, constant pre-packaged sandwiches, showers in the hospital that caused agony on the stitches, and so on.

It wasn’t ideal; things improved when we got a place at Ronald McDonald house – we got at least some normality here as we could buy in and cook our own food (not that we really felt like eating!)

The nurses were absolutely amazing – I have never seen anything like it.

So dedicated and knowledgeable, they never ever stop! They offered us continuous unrelenting support, comfort and conversation.

I always remember when one nurse had seen us literally collapse to the floor crying after I said “why doesn’t she move?” and the nurse said “there are good days and bad days… today was a bad day. But there will be good ones too”. She was right.

Many of my hours there were characterised by a bitter sadness at how most parents get to pick up their child immediately. They leave the hospital same or next day.

We waited five days to hold our child, and when we did it took 45 minutes to safely get her from the incubator and into our arms.

I remember at that time thinking I was endangering her by holding her in case I knocked a tube out – a mum should feel like she is protecting her child when she holds her. It still hurts to think about.

The other hours were spent either sterilising breast pump accessories, or indeed expressing the milk via a pump. This was a very exciting time for us, not only did it keep us very busy, it also meant I was giving her something that would help her. It was amazing and I continued to do it for as long as I could.

Anyway. You may have gathered that, once I get onto this subject, I could talk about it forever.

We were only in NICU for two weeks; the remaining four weeks was spent back at the local hospital once Amy had stabilised and was safe to be at the neonatal unit.

But I shall leave this here with you all… if you ever see a fundraiser for a local neo natal unit, a NICU, or Ronald McDonald house – please spare some pennies.

You may not realise just how much those pennies matter to people like us.

There were many things given to us during that time that softened the blow and they may not have been available if it weren’t for the generosity and kindness of others.

If you too have been through a NICU journey – feel free to leave it in the comments. I read all blog comments.

Also if you are struggling to sleep, or cope with the memories, if you have flashbacks, PTSD and so on – I urge you to talk to a doctor and seek medical attention for either medication or therapy.

Talking about it is half the battle sometimes.

If someone you know is staying at NICU with their child – they may want some space, don’t take it personally, it’s just a really hard time.

If they are happy having visitors – snacks never go amiss, also tell us about back home and your day etc. – sometimes the distraction is welcome, we forget there is a real world out there.

Waiting, Anticipating…

The purpose is to see if the Doctors can identify where in his brain the seizures are coming from and to see if those areas correspond to the abnormalities that were identified in his MRI a few months ago.

In itself it is a non-invasive procedure, however the prospect of trying to entertain a five year old, with a cognitive age of three to four years old, for four days, while he can’t get off the bed, does not fill me with any great joy!

As the admission is looming I’m feeling ever more unsettled.

We have wanted for this to be done for over three years and it has been a massive battle to finally reach this point, involving three neurologists, differing opinions and me having more than a few hissy fits in our primary neuro’s office!

We have to know.

We have to find out if there’s any more than we could do to help our baby boy.

However there is a very good chance that it will raise more questions than it answers, and I’m not sure how I feel about that.

We feel relieved that we’re finally getting the necessary tests done, but very anxious and apprehensive about what the results may show.

We are torn between wanting the results to show that another therapeutic option may be available to him, coupled with fear that it might and the knowledge that any decisions made would not be easy.

So, tonight I have made sure the iPad is fully charged and I have packed the chargeralong with art materials (paper, pens, etc.) in the hospital bag ready to attempt to entertain the little chap while he does his thing.

I am now going to try to get some sleep, as it may not come easily this following week!

Special Needs Vests

This month, we have focused on popper vests for older children.

Our panel is trialling a selection of popper vests, bodysuits and sleepsuits from Marks & Spencer, Wonsie and Rackety’s.

It is very common for babies and younger children still in nappies to wear popper vests.

However, when children with additional needs out grow the popper vests which are widely and cheaply available up to the age of 3 in most supermarkets and clothing stores, parents often struggle to source similar vests or bodysuits for older children.

There are many reasons why parents and carers prefer to continue to use the poppered vests rather than standard vests with their children still in nappies these can include comfort & warmth to hide nappies as well as to prevent stripping, nappy dipping, smearing and eating poo.

Annabel McMahon from Rackety’s commented, ‘These are very common problems but each parent who experiences them for the first time feels very isolated, they don’t realise how common the problem actually is.’

According Annabel, Rackety’s customers report three main reasons why their products are so invaluable:

1. Keeping warm, comfortable, dry, dignified, hiding nappies once children (and adults) are past the standard age for being dry.

2. Preventing hands in nappies, inappropriate behaviour in public, keeping a child from playing with their poo and smearing.

3. Tube access, this works both ways, the problem of allowing parents access to the tubes, especially in public, and the reverse problem of keeping the kids from pulling at the tubes or worse still tugging them out so they have to go back to hospital and have further surgery.

If you use any of these, which poppered vests, bodysuits and sleepsuits worked best?

Disability Labelling

I, for one, have a major problem with labelling and stereotypes.

I fear that people can make unfair, preconceived judgements of others depending on the label given to them.

For instance, I cringe when I hear someone say the, “Down Syndrome boy”.

Thousands of babies around the world are born with the genetic disorder that leads to the diagnosis of Down Syndrome (or trimsomy 21). In fact, it is the most common genetic disorder in the human species.

All of these babies who grow up into children and adults, are unique and wonderful individuals!

How unfair to assume they are all the same or describe them by their syndrome.

I’m not saying that there aren’t a number of distinguishing features of the condition.

But please do not label a child with so much potential for happiness and success in life by his condition!

I know a couple people who have Downs and they are the happiest, brightest people!

There’s something to be said for innocence, and unbridled trust in and acceptance of others.

Their love and joy is infectious!

As parents, and a family as a whole, we too have felt what is like to be different and to stand out. Our youngest daughter falls into the ‘disabled’ category.

I must admit it was not easy coming to terms with that, using the terminology at first, or even applying for disabled parking privileges.

Five and a half years ago our daughter was clinging on to life for what seemed like an eternity.

There’s no doubt in our minds that she’s a miracle and meant to be with us, with our family.

That doesn’t mean that she’s ‘perfect’, ‘fine’ or even ‘normal’, but what defines those words anyways? Are any of us?

Our Brielle is an extremely active, happy and adventurous five year old girl who happens to have quite a collection of disabilities resulting from her extreme prematurity.

She has three doting big sisters and a huge personality.

I’d rather see her disabilities as a side-note, a description of her abilities and development, rather than a defining label.

I’ll never forget a few years ago, a woman looking at my daughter in her stroller in the elevator of Seattle Children’s hospital and asking me “what does she have?”

I think my face said it all, but I remember muttering something to the effect of “lots of things”.

My daughter is beautiful and she’s also a little rascal, and yes she does have an A4 list of diagnoses and conditions. It’s fair to say she has multiple disabilities.

But she is learning to live her life despite of those and in her own way and time.