The Nightmare of Holiday Shopping with a Child Who Has Special Needs

Oh no, I have to go Christmas shopping with my child with special needs.

This is where you enter a lot of frustration and you haven’t even left the house.

The anticipation of loading and unloading a wheelchair in a skiff of snow makes your fingers instantly numb.

There’s the fact your child really hates coats and dislikes shoes.

And that the gobs of holiday shoppers will gawk even more than they do on other days out.

Thoughts of long lines makes you sweaty and itchy because you know it means that your child will be on sensory overload is bound to gag and potentially vomit, then cry uncontrollably for doing so because he can’t control it.

You’ll scramble for klennex, or the sleeve of your coat, but not before sanitizing your hands because you touched a grocery cart or something on the shelf last and may introduce a life-threatening germ otherwise.

You’ll purposefully flee to the other side of the store if you so much hear another child coughing.

You know you can’t possibility spring to the isle that has a Hatchimal or NES Nintendo Classic because well you can’t run people down with your child’s wheelchair and know that in the event it was damaged by psychotic shoppers insurance would take years to repair it.

Then you get to the depressed stage – you’ll cruise isles gathering ideas or trying to prompt your non-verbal child to give you a clue as to what they’d love for Christmas.

Just like the year before you spend way too much time in the baby toy section – even though your child should have developmentally outgrown that section many years ago.

And while his mind has, his physical abilities have not.

You egg him on to knock over a toy that he has an interest in off the shelf with his athetoid movements and high extensor tone.

He does only to get a multitude of stare downs from other parents and employees who then quickly look away once they see the wheelchair and assume you simply drove him into a pile of toys carelessly.

The check-out lane.  The finish line.

But wait.  Not really.

The lines are four people deep, each filled with carts to the brim.

The are people behind you and you’ve just started putting your items up for the cashier when the person in front of you demands a price check… and then a recheck… and then has to stand and silently to think about it attempting to make the cashier uncomfortable enough to just say it’s free now please go away.

All the while your child with special needs has started to scream because they are less than thrilled with the behavior of the customer in front of you.

You just want out of the store.

You’re even willing to leave what little treasures you were able to score behind.

You just want to go home.  Retreat for your sanity.

You’re pinned and have nowhere to go other than to stick it out until the end.

You finally get your items rung up and you whip out that debit card faster than you can say, “Happy Holidays.”

And just like that you’re gone with the wind.  A blazing blur out of the store.

You get to the car and think to yourself – I finally understand the true meaning of a Nightmare Before Christmas and vow to finish out the year with online shopping.

Our First Hospice Visit

Death? Dying? Sadness? The end?

Until a few months ago, I’d never set foot in a hospice.

My grandmother passed away in a hospice several years ago, and while I was overseas during the short period she was there, my father talks fondly of how her last days were spent in a calm, non-medical environment, where she was at peace.

Having your child referred to a hospice, however, sounds like the stuff of nightmares.

A children’s hospice sounds like the saddest place on the planet.

A place you want to totally avoid.

Except, that wasn’t our experience.

Our 5-year old daughter, Miss Z, has always been medically complex as well as having multiple disabilities.

Although my husband and I have always known that children that suffer from Miss Z’s conditions – such as uncontrolled seizures, aspiration, chronic chest infections – often lived shorter lives, it wasn’t until last year, when things got really bad, that she was officially diagnosed as being “life limited”.

She was referred to the Palliative Care team at the hospital and her doctors began a conversation with us about resuscitation plans and what sort of medical measures we wanted to prolong her life.

We had to have painful, honest discussions, just the two of us, about what we wanted for Miss Z and where we could draw the line…and still live with ourselves.

Out of those conversations, one thing became clear to me. Miss Z hated being in the hospital and was unhappy there.

So, if/when the situation arises, I want her to spend her last days at home or in a hospice, not in the hospital.

Although hospice movements in the UK and the US are well established, Australia is sadly lagging in paediatric hospice care.

However, here in Brisbane we have been blessed with some people who recognised the importance of having a children’s hospice in Queensland – and then set out to build one.

Our family have been enthusiastic supporters and fundraisers of Hummingbird House – the first children’s hospice in Queensland (and the third in the whole of Australia).

However, there was still a part of me that really felt like we weren’t the ones who needed it.

In fact, when we had our first conversations with the hospice, I pointed out that Miss Z had emerged from her “bad patch” and was much healthier and our family was coping – so we probably didn’t need much in terms of their services at this point.

Then we had our first family respite weekend at the hospice.

And I realised how much we really did need it.

Suddenly all the responsibility for Miss Z’s care that we have internalised, that we just get on with, that sucks up so much of our daily lives, was lifted.

I didn’t have to carefully draw up all her medications and gradually give them to her at night before I went to bed.

There was no sprint to grab the suction when Miss Z started coughing. I didn’t have to keep an eye on her feed pump to make sure she was getting enough nutrition at the right speed or make sure that one of us could always see her in case she had a seizure.

All the care was taken over by a group of exceptionally kind, gentle nurses – one of whom was always with Miss Z.

At first it was difficult for me to hand over Miss Z’s care. But I gradually relaxed into it. And the nurses were quite happy for me to get involved and then step back again.

But what really made me relax was that Miss Z enjoyed it just as much as I did.

There were endless activities for her – cuddling the hospice chickens, taking a turn in the garden, lying on the waterbed in the sensory room watching the fairy lights twinkle, rolling on the floor in the lounge or the playroom, to name a few.

All the activities were accessible to Miss Z, even though she isn’t able to sit or stand independently. And when she got tired, her carer would take her somewhere quiet for a nap.

Seeing Miss Z happy and able to engage in activities with her big sister was priceless.

As was being able to sit in the garden and read a book. And not worrying about preparing meals – not to mention eating food that was vastly better than anything I could ever cook – was wonderful.

There were a few confronting moments.

During our stay, my husband and I were shown the end of life suite – where families can stay after their child has passed away to say their final good-byes.

It was beautiful, but I was overwhelmed by the thought of how much sadness that room was going to see in the years to come.

However, overall, our stay at the hospice had nothing to do with death or dying.

It was all about relaxing, having fun as a family, and making some memories.

It made me realise that our family really does need that.

And now, we can’t wait to go back.

Special Needs Brothers & Sisters: Constant Arguing!

They have found a new ability to argue even with the lack of things to argue about.

We can now argue about the staff’s gender at McDonalds drive through.

I order their food at the little microphone box, I make my way to window two and they start.

George wants the employee to be a boy, Peony wants to be served by a girl.

Even when we are at that window two and we can clearly see the gender of the disheartened individual they argue. Peony will say, “Yey, it’s a girl!” and George will say, “No, it’s a boy.”

I’m dying at this point, just wanting to pay and move to window three where we can do it all again.

The problem came when Peony was right in saying, ‘Yey, it’s a girl’, but George loudly demonstrated is protest in this assumption.

The girl was a girl whom for a child it could be deemed as difficult to determine gender, especially in a very generic uniform.

So there I am putting my pin in as quickly as I possibly can because George is, obstinately or not, shouting, ‘Yey, it’s a boy, see it’s a boy’!!!

I just needed the world to swallow me up at this point.

What do you do?

Should I have apologised, or do what I did?

Totally ignore my children, fight the urge to say lets get you back to your mummy and drive away as fast as I could — Well, drive to window three, that is, where the whole bloody saga started again!

A Different Kind of, ‘All Touched Out’.

A phrase that doesn’t quite cover all the feelings inside and out.

That phrase is, ‘All touched out’ .

I breastfed all three of my children for long periods of time, my youngest being the longest.

It was truly amazing to see them grow and thrive while I was doing what I felt I was made to do.

But towards the end of my youngest child’s feeding journey I started to get the feeling of being ‘All touched out ‘ .

I had a river of feelings and emotions flowing through me making me confused and on edge.

I’d never felt this way before.

I knew how much comfort my child felt by feeding from me but I also knew we had done an amazing job to get that far.

I had this feeling following me around like a shadow, a feeling of wanting to be away from everyone,  it was so strong I even wanted out of my own skin.

A cloud of demands silently above me.

At times I’m reminded of this feeling but for a different reason.

As I said I have three beautiful children, each different yet amazing…my nine year old son is severely autistic, a non verbal ray of sunshine.

But it’s not easy caring for a disabled child. I wouldn’t say it takes a special kind of person to do it because I’m not!

Far from it, I’m just a normal mum doing my best.

I do school runs, housework and cook, even walk the family dog. Just like every other person. Then I have other things to do like a constant stream of appointments to organise, prepare for and attend.

Mountains of paperwork to organise from therapy reports to EHCP.

I lift his wheelchair from the car and change nappies of a growing lad.

I deal with meltdowns and my sons self-harming.

I’ve learnt sign language and tried to teach my son to sign some words.

Ordering adult sized nappies and therapy aids.

Helping my other children cope with their own emotions of having a disabled brother. .

Like many mothers in my position I’ve put this pressure on myself to be the perfect mum and keep on top of the house, family life and being a good wife while being a good carer.

Beating myself up if a job gets missed, yet always having a smile on my face as I couldn’t bare if people saw how tired I was.

How ‘ All touched out ‘ I was feeling from the pressure and demands of being a mother and a special needs parent.

But you know what?  I’m tired of trying to be the perfect mum!

I am a good mum!

I make mistakes and do things wrong at times.

I forgot jobs and even the odd appointment has slipped my over crowded mind but my children are cared for and very much loved with everything that I am.

So who cares if I didn’t do any washing yesterday or my children had a chip dinner Monday because I was exhausted.

So what if I don’t get a chance to hoover today or I forgot to order more nappies?!

I’m still a good mum, my children are still cared for and smiling.

My son’s care matters a whole lot more than hoovering and dust.

And maybe one day I’ll put into practice what I so desperately want to do.

Ease the pressure I placed on myself and be happy with just being a good mum.

Surgery and Second Opinions

Even when it’s a minor operation, your mind races with worry because SURGERY is a scary word.  Anytime anesthesia is involved, especially if your child has special needs, panic can quickly set in.

When my daughter needed major hip surgery, these emotions were overwhelming.

My daughter was born with a rare genetic disorder, and one of the common features of it is congenital hip dysplasia.

We began seeing an Orthopedic Specialist when she was three years old.  We were told that her hips popped in and out of their sockets and in the future, this could cause early onset Arthritis.

Picturing my baby as an adolescent in constant pain, this was very frightening.

We met with our specialist many times, looked over several x-rays, and tried various methods to “fix” her hips in a non-invasive way.

Nothing worked.

Each time, the x-rays looked the same.  No improvement.

Our specialist waivered back and forth at each visit…once he told us that since she’ll “never run a marathon”, surgery wasn’t 100% necessary.

At another visit, he told us that even with crawling, the demand placed on her hips was high.  The surgery he recommended would entail cutting into both of her femurs.

It was risky and there was a chance of severe blood loss.  The mere thought of this made me want to pass out, but knowing we wanted her to live free from pain, we seriously began considering the procedure.

In order to reassure ourselves that we were making the right decision, after two years with this specialist, we sought out a second opinion.

On the anxiously anticipated day of our consultation with the new Orthopedic Surgeon, we quickly realized that fate had stepped in.

This doctor worked in a beautiful Orthopedic Children’s Hospital, and the environment was completely warm and inviting.  Within minutes of meeting him and hearing his impressive credentials, we started to feel some relief.

He confirmed from her x-rays that surgery was necessary, if we wanted to enhance her quality of life.

When I told him that we didn’t know if she would ever walk, he responded in the most incredible way.

“I’ve seen plenty of miracles happen.”

Then, talking over the procedure, he explained that she needed Dega and VDRO surgeries done.  This meant that the femurs would both have to be cut and the femoral head (ball) of each would need to be repositioned.

Also, her acetabulum (socket) on both sides would need to be reshaped.  That was a great deal of information to swallow.

Our new specialist was a pro at these procedures and made us feel as comfortable as possible in the given situation.  He explained it all in a way we hadn’t quite understood before.

He also told us something else that ultimately sealed the deal for us.  “My team and I will pray over her before we begin her surgery.”

That meant a lot to two scared parents.  We held our breath, and scheduled the surgery.

After a few months of dreading the upcoming surgery date, we took our five year old in and handed her over to this man.

We were filled with tears and it was gut-wrenching to let her go.

But we had the feeling that she was in the best of hands.

He was gentle and caring and he put us at ease with his positive attitude and kind demeanor.  He emerged over three hours later and greeted us with a hug and wonderful news.

Our daughter had done extremely well and there was minimal blood loss.   Weights were lifted and we knew the road to recovery ahead would be tough, but she had made it through.

We had absolutely chosen the right surgeon.

Fast-forward 11 months….she recovered amazingly well and we are without a doubt glad we had the procedure done.

She’s since been back there for another surgery to remove the hardware placed in her hips, and we were again met with his gentle and expert care.

Second opinions can be a wonderful thing…I’m glad we trusted our gut and looked elsewhere, finding this fantastic surgeon.

We now have some fabulous x-rays, showing off perfect hips and a happy, thriving daughter to show for it.

The New Christmas Gift Rule: Kids

The concept is to sort of streamline both the number of gifts and the amount spent on gifts for your children for the holidays.

I like this because you can either set a budget or not set a budget depending on how much flexibility you have in your spending, and no matter how many children you are purchasing gifts for, they will all have four gifts to open.

Obviously you will want to keep them somewhat close in price, but the focus is on getting meaningful and useful gifts instead of just trying to reach a target price and keep everyone’s load the same.

We have tried this concept the last two years with great success.

I felt like picking out four gifts per child was simple, and a couple of them did not even require much thought to come up with.

So here is the concept.  For each child, you buy them:

Something they want, something they need, something to wear, something to read.

GENIUS, right?!?!

For the record, Santa also visits our house on Christmas Eve and leaves one unwrapped gift in front of the fireplace for each of the children.  That gift is not counted as part of the want, need, wear, read idea.

My children are a 5-year-old girl, and a 3-year-old boy.

So the gifts I have chosen below fit with this age group.

Hopefully it will give you some ideas of gifts your own children, whether similar in age to my own or not, would enjoy unwrapping this year.

The gifts chosen for my son cater to some of his needs, as he is our special needs child.

So keep in mind that the 3 year-old-boy gifts shown below may not be right for your 3-year-old boy, but he can most likely provide you with some ideas of your own.



Girl LEGOs


Snow boots…we had great luck with Sorel snow boots last year!


Our sweet girl is still wearing her favorite Frozen bathrobe that is two sizes too small, so a new robe is on her list.


Our daughter and I did a mommy-and-me style yoga class this summer.  This kids yoga book has great reviews and is both fun and practical as it teaches self-soothing skills to help relax the mind and body before sleeping.



This Crayola “Color Me a Song” tool looks so fun and motivating for our son who loves music but doesn’t love holding onto things.

Hopefully this will make coloring more enjoyable!


Our son will be getting a new standing frame with a tray soon, and we are in need of interesting sensory toys for him to play with while in the stander.  These water beads look like loads of fun without being messy.


Keeping his feet warm can be a challenge for our little guy, so these microwavable slippers look amazingly comfortable and cozy.


We love the Little Blue Truck book, and there are a few more books about the truck we do not yet have.  If you haven’t read any of them, they are easy to read, rhythmic, and our kids both love them.

Special Needs Families: Winter

How did the summer end so quickly this year?

The clocks changed back and in an instant, Winter seemed to wrap around my body like a leech.

Freezing my bones making me uncomfortable to even move!

The leaves falling from the trees covering my drive like a blanket, the red and yellow leaves that had been flourishing all summer, housing birds and squirrels, discarded overnight.

The branches now bare, no longer a place for wildlife to escape to, nibble on, or nest in. Waving naked in the wind.

Winter makes me sad, the children once again confined to the house for long periods, because due to some quite challenging symptoms of their disabilities we don’t get to go out and about much, so the gardens are their sanctuaries.

My children get cold too.

Very cold.

Yet like me, they are averse to wrapping up, being confined to coats, hats, and scarfs is problematic for us.

We find it highly uncomfortable, the extra layers causing us to itch and fidget uncontrollably, until we discard them once more seeking comfort over warmth.

Hats and odd gloves get misplaced, shoved in places for safe keeping and forgotten about!

My children have sensory issues. They prefer more comfortable clothes than fashionable ones.

They live in PJ’s and as they’ve gotten older they’ve learned that sometimes warmth is preferable to comfort.

We dig out those hats scarves and gloves, and put them on in the hope that this year maybe they’ll wear them and keep them safe, maybe the feeling of discomfort will be averted this year.

Maybe they’ll be warm and comfortable. I totally understand though, I feel the same.

And I sympathise completely.

But with winter drawing in, comes the beauty of the festive period, a time for friends and family to really value each other, enjoying the social occasions, and spirit of Christmas that is beautifully magic.

My children still believe in the magic of Christmas and I take full advantage of their innocence.

Creating the most magical time is important for me, and for them.

They believe.

This winter, I hope it snows.

I hope that the ingesting colours of the red and yellow blanket of leaves on the ground is replaced by a soft, thick, powdery blanket of snow.

There’s something about seeing the snow falling, and the sky lighting up orange, that enthrals me, mesmerises me completely.

I’m 31 years old, and love nothing better than waking up and seeing snow covering the ground.

For my children though it is unbelievable.

They don’t understand completely of how or why snow is formed, with their developmental delays it’ll most probably be some years before they do, and so to see their faces when those white flakes fall into the garden, watching for hours out of the window, sipping on hot chocolates with marshmallows, completely makes my year!

Please let it snow this year!

The Moment Anxiety Took a Hold of Me

It doesn’t have a set path that it dishes out to everyone, based on their own circumstances, it doesn’t choose who will be fortunate in health and well-being, it doesn’t choose whether you are able to have a family, work, or be happy.

Mostly your life is defined by the choices you make, and that includes some health issues. Mostly though, and this is the case for my family our bad health is in our genes.

But as we all know life has a way of throwing multiple things at you with such force and ferocity that you have no choice but to juggle these all at the same time whilst still trying to live this life and jump over its forever climbing hurdles.

That is how anxiety took a hold of me.

And that’s how I felt when I realized that I was suffering with anxiety.

Me and my partner have three beautiful children, and two of those are diagnosed with Autism and ADHD, my girl along with those diagnoses suffers with anxiety, hyper mobility, sleep apneas,

Sensory Processing Disorder, and a smattering of other co –existing conditions.

Life for us was very challenging, very up and down and a few years ago due to everything unfolding – and not really knowing how to handle or deal with these conditions – very unhappy.

In 2014, my partner was diagnosed with a neurological condition called X – Linked Adrenoleukodystrophy.He may loose the use of his legs, and he may also need lifelong care.

Life just kept throwing these curve balls, and I just kept catching them and throwing them up in the air along with the rest ready to catch them again on their return.

They were just spinning and spinning, and nothing seemed to stop, there was never a break.

I found my life spiralling out of my control.

We had a calendar full of appointments, many that we had to travel quite far too. Many that needed day beds, and anaesthetics, lumbar punctures, and operations.

I had hospital reports coming out of my ears, and mostly I found out more in a hospital report than I did in the appointment, which then raised more questions, and requests for more appointments.

I was waiting patiently for the postman every day.

I needed those letters.

I needed to read those reports so desperately.

And then my Dad suddenly passed away. My beautiful, wonderful, funny, dad, whom gave his everything when we were children to create happy, perfect, memories that I treasure dearly.

I was grieving and I realized I wasn’t just waiting patiently for that postman anymore, I was detouring on my journeys, after lunch time, knowing the postman’s routine, to collect my letters.

I would check the doormat first thing as soon as I walked in the door.

I would rip those letters open and be so disappointed if it wasn’t something that I was hoping for. ‘Its ok though I’m sure it will be here tomorrow’ I told myself, and so I would wait again, constantly thinking about these letters, spotting the postman and watching at the window, waiting for him to walk down my path I could actually feel the excitement of what he would bring me.

The feeling of despair I felt when he walked on by with a nod of his head was like torture, a deep, painful roar felt throughout my body. I felt like my only purpose in life was to receive these goddamn letters.

I don’t even know when I realized it had become a problem; there were other things, too.

I had no patience anymore, everything was an annoyance to me, and little things like asking me simple questions would be met with intolerance, snappy remarks and sometimes just plain ignorance.

I was also convinced that I had some terrible disease and I was going to die.

I had to sort my family out, I had to tell other family members more about our likes and dislikes, and how our routines went. And if I did die I needed to make sure that my family knew I needed my daughter in a special school.

It was by far the best place for her. I told my partners family that if I did die, someone to have to help him out with the kids because he wouldn’t be able to do this himself he was physically incapable.

I imagined all sorts of things and in my head I prepared for the worst. It was all consuming, I had nightmares, I was so panicked.

I was a nightmare to be around. I couldn’t concentrate on anything but these letters.

My hearing sense was heightened too, certain sounds made my skin crawl and I would sometimes scream because it was so physically painful.

I knew that for the sake of my family, I needed to get help; I had to talk it through with my GP at least and ask her opinion.

Yes I had anxiety and I was given a tiny dose of anxiety tablets. I have also been referred to Talking Therapies, which is on my To-Do list and really needs to be prioritized.

The tablets help, and I’m glad that I finally went and told them my issues because if I am not 100% then my family simply cannot function.

I don’t believe I’m dying anymore, and I do not detour through my day just for the postman.

It hasn’t completely relieved me of the anxiety, I’m still thinking about the postman all the time, but it has gotten easier. And I’m thankful for that.

Where Is My Instruction Manual?

The nurse that gently lays the baby on your chest fails to also include a handbook…..a handbook filled with all the definitive answers to the questions that new parents face.

Instead, you embrace your beautiful bundle of joy and soon head out into the world with him; to figure it all out on your own.

It is terrifying.

Being a mother to a daughter with multiple disabilities and a son on the Autism Spectrum, that instruction manual sure would have been handy.

When my son wouldn’t chew and needed feeding therapy until age three, some clear- cut answers would have been most helpful.

The moment when we realized that tags in shirts, “hurt”, and when we experienced our very first meltdown, some straightforward directions would have been greatly appreciated.

I can remember years ago trying to maneuver through this uncharted territory for us and desperately asking, “WHERE IS MY INSTRUCTION MANUAL?”

The first time I heard the terms, “504 Plan”, “Profoundly Mentally Disabled”, and, “Seizure Disorder”, a book filled with specific instructions on how to react, how to move forward and how to breathe was seriously needed.

Upon learning of diagnoses and absorbing the initial blow of Autism and Chromosome 1 Deletion, (within five months of each other) I could have really relied on a foolproof method to tell me how to cope.

I needed something tangible to teach me exactly what to do, step-by-step, to ensure I didn’t screw everything up.

As the years have gone by, I have thankfully crossed paths with many amazing, brilliant and caring therapists.  Occupational, Physical, Speech, and Social therapies are a part of everyday life.

I have gained invaluable knowledge from them that has helped propel me forward; helped me to grow and learn to be the mother that my children need.

I have been lucky to forge friendships that are built on a common foundation – our children.  Meeting others that walk in my shoes, who are also trying to figure this whole thing out, has been a saving grace.

We share advice, joys and sorrows.  I have gained a better handle on this life, with their help.

More than anything else, the one thing that has replaced that coveted instruction manual is love.

The unconditional, unstoppable, unmeasurable love that I have for my children is my constant drive.

Situations arise constantly that I am unprepared for.

A new type of seizure, a new anxiety trigger and the need for major surgery have all snuck up on us within the last year.

Hurdles will always pop up in our way.

We just have to keep jumping those hurdles.

As long as there is breath in me, my priority will be learning how to make life better for two incredible little people.

Beyond all else, they are my children….showering them with love requires no instructions.