Everything Happens for a Reason…?

Bowler writes that sometimes silence is the best response-

“The truth is that no one knows what to say. It’s awkward. Pain is awkward. Tragedy is awkward. People’s weird, suffering bodies are awkward. But take the advice of one man, who wrote to me with his policy: Show up and shut up.”

YES! Totally agree with that! Often, we don’t have the right words to say. Mostly, those suffering just need to know you’re there, that you care.

Cliché phrases and lots of questions are NOT going to help.

One phrase that people like to offer as condolences for one’s suffering, or loss, is:

“Everything happens for a reason”.

Come on…really?

Now I take great comfort in my faith in God, and His love and presence in my life. But I accept that I live in a mixed-up, often evil world where lots of bad things happen.

Suffering and pain exists in all of our lives.

Imagine saying to me “Everything happens for a reason” in any of these circumstances.

~Losing my dad to cancer before my sixth birthday.

~My daughter develops seizures at six months old, and continues to have seizures and be on medication for epilepsy (she’s almost 9 now).

~My baby dies inside me after just 16 weeks. She’s perfect and tiny, but painfully still as I hold her in the palm of my hand.

~ Brielle is born far too early and struggles to live for six whole months and a week in the neonatal intensive care.

~ She is then diagnosed with multiple disabilities as a result of her being premature. DISABILITIES. I thought my baby was going to be “fine”.

~One of our best friends is diagnosed with terminal liver cancer at just 40 years old. He’s Daddy to five beautiful children.

These are some of the hardest things I’ve had to deal with in my life.

I know each of you reading will have your own list, too.

Having a child with special or complex needs is difficult. It’s never helped when someone commented on poor wee Brielle, “ah bless, well everything happens for a reason, and you’re the best mum for her”.

It hurts, and it’s difficult to see her many daily struggles, and the things she can’t do.

Sometimes the best things my friends can do, is just BE there, and say nothing at all.

Why I Love the Firefly GoTo Shop

My son Brody is 6 years old and unable to walk for a long time around a supermarket.

He is too big for standard trolleys now and I can’t push his wheelchair and a shopping trolley at the same time.

This is most likely something a lot of people don’t think about – because let’s face it, they don’t have to!

But it really is a problem for many families.

Luckily for us, our local Tesco store in Falkirk has a Firefly GoTo Shop shopping trolley.

It’s a game changer for us and many other local families who walk in similar shoes.

It’s great that Tesco took the initiative to have one of these in store and it’s fantastic that in doing so they’re promoting inclusion and access for all – something that all businesses should champion.

A simple thing like this can bring communities together and prevent isolation.

It also creates disability awareness. We’re not all the same, and that’s okay!

The GoTo  Shop trolley seat not only means that I can take Brody shopping with me, it means that he is comfortable.

The seat offers extra postural and head support and a secure five-point harness.

I now have to avoid stores that don’t have a GoTo Shop Trolley because shopping with Brody is just not feasible on my own without one.

No family should be limited to where they can go to shop, but sadly many are.

When we are away from home, we know that we can use the Firefly Finder to find a store that caters for our needs.

I would love to see Firefly achieve their campaign aim of seeing a GoTo Shop trolley in #everysupermarket.

If you feel the same way, speak to your store manager and make them aware of the GoTo Shop Trolley.

You can find a leaflet on the Firefly website here, which you can also print off and hand in.

Small things really do make a big difference.

Stuart Milk said that “we are less if we don’t include everyone” and he was right. Inclusion should always be a priority.

Every little helps!

Eating Disorder Awareness Week

One of the lesser known eating disorders is ARFID (avoidant/restrictive food intake disorder).

ARFID is a psychological disorder where the individual has clinically significant difficulties with eating or feeding.

The onset of ARFID is usually during a child’s infancy or early years, and is attributed to a number of circumstances.

Severe reflux during the new-born period can instigate bottle/breast refusal, as can a traumatic choking experience during weaning or early childhood.

Children with autism spectrum disorder may demonstrate sensory processing issues associated with certain colours, textures, tastes and smells.

Some neurological conditions can result in underdeveloped oral motor skills in young children and babies, resulting in eating and drinking being an unnatural and alien experience.

This was our story: Jenson was 13 months old when we learned of his neurological genetic disorder and by then the damage had been done.

But whatever the cause, the consequences of ARFID include a learned and instinctive behaviour towards food where the young person considers it to be a threat and therein instigates food refusal. It is akin to a phobia.

Sadly ARFID is largely unfamiliar among health professionals as a recognised mental health disorder, and it is dangerously un-resourced by our health authorities.

I have sat in front of many health professionals educating them on the subject; most have been eager to learn but some still box it with ‘picky eater’.

Where weight isn’t an issue, for example if a child is surviving on just chicken nuggets or potato waffles, parents are frequently told the child will ‘grow out of it’.

Parents are judged, sufferers are misunderstood. Consequences can be devastating.

Very sadly, the default care pathway for small children where weight gain is compromised is to place a feeding tube.

This is the equivalent of sticking band aid on a wound and leaving it untreated. Children who have tubes placed often relinquish their potential to eat forever.

At 2 and a half years old and with a dangerously low consumption of high calorie prescription formula, we were at our wits end with Jenson’s refusal of anything solid.

He was dancing dangerously close to dehydration and his contempt of all foods was not showing any sign of waning. It was a heart-breaking and gruelling couple of years which traumatised all of us.

When your child won’t feed from you, breast or bottle, or eat your prepared foods, the emotional onslaught as a mother is harrowing.

It was Jenson’s low muscular tone throughout his body that meant he had reduced oral-motor coordination.

His mouth sent messages to his brain that any spoonful or mouthful was a choking hazard: it was threatening his life.  The brain responded by creating a barrier and feeding refusal was born.

We had exhausted all the well-meaning advice from speech and language therapists, occupational therapists, dieticians and paediatricians.

He was classified as ‘failure to thrive’ and gastrostomy surgery was scheduled.

It had been the most upsetting and traumatic few years, watching your child seemingly choose to starve themselves, and for no one to understand, never mind be able to help.

I accepted that a gastrostomy was inevitable but a small voice in me was shouting out that he deserved to learn to eat, that I must not just give up on this possibility.

As a last resort I trawled through Facebook groups. I found some expertise about ARFID and I can only describe it as an epiphany.

We challenged and campaigned our local NHS but were unsuccessful at being heard or understood.

However, we were fortunate enough to secure some private specialist help and an expert team to pave our way forward to bring Jenson closer to accepting food.

So today, at 5 years old, Jenson asked me for a cup of water, and then electively and independently fed it to himself. Only parents of children with ARFID will understand the magnitude of this event.

So I whipped out my phone, took a photo (see above!) and whipped out my laptop, and wrote this blog.

Jenson is now eating a range of foods but we still have a long way to go to counteract the underlying and widespread effect that his ARFID caused to his relationship with food and feeding.

ARFID is not picky eating. It is not bad parenting. The child won’t just eat when they’re hungry.

In fact, the feeling of hunger becomes so normalised to them that they can develop a permanently distorted and diminished appetite.

In ARFID, a sufferer’s brain will react pathologically to food akin to a diabetic reacting to sugar. They may gag, vomit, thrash out, cry. Therein lies the perpetuation of the no-eating cycle.

Health implications can be huge as a result of chronic malnutrition. But ARFID can also have widespread social, developmental and educational consequences.

Bullying, social isolation, dental decay due to severe oral sensitivities, traumatic school lunch breaks, families unable to dine out together.

Family bonding is often underpinned by the dinner time ritual and routine, but where this is interrupted by an ARFID sufferer the whole family is affected.

It is excruciating to watch and experience ARFID in its path of destruction.

I hope that this medically recognised mental health disorder can become more readily diagnosed and treated, and that the healthcare system can resource our health professionals so that children don’t have to suffer like Jenson did. #beateatingdisorders

I’d like to take this opportunity to thank the wonderful team of people who turned things around for us.  Jenson’s feeding fairies:

Midland Psychology Specialist Feeding Service

Active Play Therapies



Do You Feel Like Your Life is on Hold?

A trip to visit my best friend and family and also attend a wedding with my husband in beautiful Whistler. A little getaway from the kids…or not.

Last week I had to cancel my flight. My daughter has not been well at all this past month and a half.

Both of us parents being away (and a whole-day’s-travelling- distance away at that) was just going to be too much.

Did I mention that I HATE seizures?! I actually detest them.

They are one of the most terrible things in this world in my mind. So much unknown. So many questions.

What was the trigger? Why now? Why my little girl?

Two out of my four daughters have epilepsy. SO not fair!

Elizabeth started having grand-mal seizures at just six months of age, and she was on medication until she was seven years old.

All her testing always came back completely normal- so we had high hopes she would someday outgrow her ‘childhood epilepsy of unknown origin’.

She was weaned off the meds, and went for a while with only one break-through seizure last year.

Until last month. She’s had four seizures now since mid January and is back on medication for the foreseeable future. Awaiting the results of a recent EEG and MRI.

No known trigger or cause that we can pin down.

We feel helpless. On high alert.

She’s fallen twice and banged her face pretty bad at the onset of a seizure. The last three have been in her sleep and she’s bitten her tongue.

Thankfully she has a great big sis (aka ‘lil angel’) that shares her room and wakes me up if she hears the strange gulping and moaning sounds of a seizure.

Life to some degree has come to a halt. I’ve had to put some things on the back-burner and focus on being a mom and carer to my girls.

Travelling can wait. My nursing shifts can wait. Classes and massages for my essential oils can wait. Meeting friends for dinner and any leisure plans can wait.

Family comes first.

The more children I’ve had (I’m done now, thank you very much!), and the more health issues that arise, the more I learn that it takes a lot of time and patience, and love, to be a mama.

You will need to make LOTS of sacrifices. You will need to improvise, and revise your plans, often!

Life doesn’t always work out the way you either want it to, or thought it would.

But even so, I’m ever thankful for each day with my little treasures, and blessed to be called, “Mom”.

Our Rare Disease Story

I imagined going for walks in the park with our dogs, swinging on swings and sliding on slides, shopping for shoes and her first pair of earrings, and sharing my great love of horses and horseback riding with her.

I pictured braiding her hair and talking about boys, sipping cocoa and watching movies like The Lion King and Frozen, singing songs on the radio with her in the car. . .

She was perfect, and beautiful. Our lives would be perfect and beautiful too.

It was Not perfect when we got home – unless you wanted to call it a perfect nightmare. She didn’t sleep.  She just didn’t.  She spent the nights wailing and screaming inconsolably.

I spent night after seemingly endless night in tears as I carried her, patting her, rocking her, nursing her until she slept – only  to lay her down and have the screams start again.

I didn’t know what to do. No one did.  I assumed it was colic, changed her formula and tried every over the counter gas and colic relief I could find.  Nothing worked. I resigned myself to suffering through it.

On top of everything else, she was a poor eater and scored “Failure to thrive” at her first checkup.

When she was 3 months old, my sister in-law noted that she wasn’t tracking. Fearing Hydrocephalus, we rushed her to the E.R.

The doctor there examined her, and ran a CT scan.  He relieved us of that particular fear, only to tell us that there were other concerns. “Global Developmental Delay.”

Those three words were just the tip of the iceberg that would turn our normal world upside down.  One doctor, referral and specialist after the other; each in turn left scratching their heads.

Was it Cerebral Palsy?  For a time, it seemed this would be our diagnosis.  I felt total dismay, but then a tiny sliver of hope.

After all, there were a few extraordinary individuals who overcame CP and lived full (if modified) lives. But one doctor wasn’t ready to assign this diagnosis.  It didn’t quite “fit.”

So we were sent to yet another hospital, with more specialists, examinations, consultations and tests.  Finally, full genetic testing was ordered.

As I had too many times before, I held down my hyper-flexible little girl as she screamed while vial after vial of her blood was drawn for testing.  My heart tore for her.  No child should suffer so much as this.

Eighteen weeks ticked by, suspending us in agony, leaving us victims of our imagination as we imagined the worst.  Finally on a summer day in 2016, I got the call.

“We have a diagnosis.”  My heart leapt with relief. Finally, we would have answers.

Finally, we might have a chance to cure her, to fix whatever was wrong.

At our consultation, the doctors seemed to struggle to explain what we were facing.  ATP8A2 was something they had never encountered, or heard of, for that matter.

They could name it, and they could explain what happened, and even give us an approximate time frame of when it occurred, but there was No Prognosis.

No one could tell us how the combined deletion and mutation would impact her life, or if it would impact her life expectancy.

We were told that there were 6 other documented cases in the world at the time, but she was the Only One with her exact deletion/mutation combination.

The hardest news for me was that there was no cure, no experiments or medical study. I was beyond devastated.   How could this be?  What were we going to do?

Now she’s turning three.  She’s lost the few words she had when she was not yet a year old, and she’s still unable to hold up her head, eat, roll over, crawl, sit, stand or walk.

She might never do those things. She loves to swing if she’s in our lap, but pony rides are still a distant dream.  She has very poor vision, and not much patience for TV, let alone movies.

I’ve recently learned there are actually about 15 cases documented worldwide that are exactly like hers.

I’ve even been able to contact a few of the parents and I’ve learned that with one or two exceptions, our kids all exhibit the exact same symptoms. Hypotonia, Ataxia, Atrophy of the Optic Nerve, Myopia, Hyper-Gag Reflex, Non-verbal, Non-mobile. . . handicapped  in every sense of the word.

One bright spot is that they understand everything. They can learn. They just can’t communicate.

As for my daughter, she’s a healthy, growing girl. She finds tremendous joy in the simplest things – like the breeze blowing through her hair.

She draws people to her wherever she goes with her happy smile, and love of attention.  For as long as she lives, I will fight this condition.

I will fight to make her life the fullest, richest and happiest that I can.  I will fight this with her, and for her.  And perhaps we can help make a difference.

Perhaps, these other parents and I with our kids; can help turn the attention of the medical world to the plight of our children.  Maybe – just maybe – there’s a cure to be found.

Certainly we can help bring global change to how the world views and understands Special Needs.

Finding a Rare Disease Family



A disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury.

(Oxford English Dictionary)

When I was pregnant with my second child, I had a condition called polydramnios, which meant I had too much amniotic fluid.

My skin was incredibly sore and stretched trying contain the enormous bump and I looked utterly ridiculous at just over 5ft with this gargantuan ball for a belly.

I developed gestational diabetes (as I had with my first) and, despite my best efforts to control them with diet, my blood sugars were unpredictable.  As a result, I was closely monitored and had regular scans.

The doctors decided to run some tests on account of the uncontrollable blood sugars and the excess fluid to rule out some possible causes, including infection and foetal abnormalities.

Tests for infection proved negative and I was told there was nothing wrong with the baby – scans had ruled out swallowing difficulties and chromosomal abnormalities apparently.

I breathed a sigh of relief. My baby was fine.  (And I began injecting insulin for the erratic blood sugars).

A few weeks later my beautiful son, Hugh, was born, weighing in at 6lb 7oz, thankfully unaffected by the unreliable blood sugars.

Following a 9-day stint in the neo-natal unit for pneumonia, he was discharged as a healthy, typical baby.

Yet, it wasn’t long before I began to have doubts about this ‘typical’, ‘healthy’ boy.  There was just 14 months between him and my first born and the differences between them were stark.

Despite others trying to allay my fears with reminders that all babies are different, there was a growing disquiet within me.  I knew, deep down, that something wasn’t quite right.

Yet, never in a million years, did I suspect he had a rare disease.

I’m not sure what I thought the doctors were looking for when they began testing him.

He was 6 months old, by now fairly obviously delayed in his development, and with a head circumference that was dropping off the growth charts.  He was sent for x-rays and blood tests and an MRI.

My initial unrest became full blown panic as I realised I was no longer the only one that thought there was something ‘wrong’ with my child.

However, in amongst all my worries and fears, I never considered he might have a rare disease.

I never considered he might have any sort of disease.

Maybe the word as commonly used, doesn’t quite match the dictionary definition.


It makes me think of something that would make you itch; Measles, or Chicken Pox. It sounds like something you can catch from someone else.

Technically though – as the definition above points out – it’s simply a disorder that produces specific symptoms. And a rare disease, obviously, is one that doesn’t occur very often.

Hugh’s symptoms were microcephaly – a smaller than average head circumference, hypotonia – low muscle tone, i.e. a bit floppy, reflux, visual impairment and feeding difficulties.  He later developed epilepsy.

When he was around 7 months old, the blood tests led us to discover that Hugh had a chromosome abnormality.  It wasn’t straightforward so didn’t lead to a diagnosis as such.

But we did know his condition was genetic and we knew he couldn’t outgrow it. Hugh had a disease so rare it was yet to be diagnosed. Apart from that, we knew very little else.

I didn’t know then, that not having a diagnosis was an actual ‘thing’.  I genuinely thought we were alone in the world, having an undiagnosed child.

Which is ridiculous since approximately 6,000 children are born every year in the UK with a condition (or disease) so rare that it is undiagnosed.  But no one thought to mention that point to us.

We felt isolated and scared. Without a diagnosis, I felt unable to reach out to the local support groups which seemed geared towards specific conditions.

We didn’t fit anywhere. I didn’t know where we belonged.

Thankfully, shortly after Hugh turned 1, I found SWAN UK, the only group supporting families of undiagnosed children.

Things started to fall into place then.  I finally found others with children, like Hugh, who were still searching for their diagnosis.

I realised we weren’t alone at all and I made friends with other families and had people to turn to for the advice and support and information I’d been craving.

To be classed as a rare disease (in Europe), a condition needs to affect less than 1 person in every 2000.

However, there are between 6,000 and 8,000 known rare diseases and 7% of the population will be affected by a rare disease at some point in their lives.

That is equal to 3.5 million people in the UK or 30 million people across Europe.

Rare diseases aren’t actually that rare at all.  Individually they’re rare, but collectively they’re quite common.

That’s a much less isolating position to be in.

Hugh has very recently had a diagnosis.  It is a rare disease affecting at least 350 people worldwide, with new cases still being diagnosed.

It’s called FOXG1 syndrome and explains all of his symptoms and lots of the little quirks that make him Hugh.

There’s an online community of families across the globe each with this same rare disease as Hugh.  I’ve just started reaching out and I’m finding support and information here too.

We spent over 7 years searching for the elusive diagnosis and, to be honest, it’s quite a relief to get one; to finally know the cause of Hugh’s difficulties.

However, with so few people diagnosed with FOXG1 syndrome, we’re still very much part of the rare disease family.

© www.LittleMamaMurphy.co.uk

When Every Day is Rare Disease Day

It is estimated that 350 million people worldwide suffer from a rare disease, 80% of rare diseases are genetic in origin and 50% do not have a specific foundation supporting or researching their condition.

In my life, a rare disease is all of the unknowns surrounding my child.

5 years ago, Aubree was born. In those 5 years she has bravely tolerated intense weekly physiotherapy, occupational therapy, speech and language and feeding therapy appointments.

Multiple blood tests, MRIs of her brain, Botulinum Toxin injections, countless Doctors poking and prodding and leaving none the wiser.

In 5 years of life she has been misdiagnosed with 6 different conditions, each one more tragic than the last.

She has stumped every professional she has ever met, she is a quandary to specialists and more unique than we ever thought.

Most recently Aubree had a complete genome sequence, to try and find any possible fault in any gene that would cause her long list of symptoms to express themselves the way they have, it’s like trying to find a spelling mistake in 50 encyclopaedias.

Incredibly after a long wait, we got results, they found 2 class V genetic mutations in the SLC17A5 gene, located on chromosome 16q14-15, causing a condition called Salla Disease.

Salla Disease is an autosomal recessive lysosomal storage disease, her mutations cause a build-up of Sialic Acid, which is toxic to brain matter, so it destroys brain and central nervous system tissue.

Oddly, it was quite a relief to have this definitive I-promise-it-won’t-change-in-a-year diagnosis, however tragic it seems, this was a reason behind everything she has, everything she is.

Our geneticist said, “I can’t quote a number, there is no national average, there are only a handful of people in the world with this condition, and none from this country.”

Along with this came a strange sense of pride, at this point we was entirely unsurprised by its rareness, the trail of bewildered specialists we left in our wake were proof enough.

Not much is known about this condition, nothing is certain, all we have is now.

So, this is Aubree. She has an incredibly rare, life limiting progressive disease, she is also the most tenacious, exuberant, kind, innocent, wild soul I will ever know.

Rare Diseases Aren’t That Rare

I am supposed to tell you all about facts and figures regarding rare diseases.

I’ve done all that before.

I even write regularly about my son Ethan, who has a rare disease.

So what can I do differently this rare diseases day?

I’m going to share with you something I wish I had read when I knew something was different about my beautiful first born son, Ethan.

Something that I think everyone needs to really really understand is; having a rare disease isn’t that rare.

I had no idea what a rare disease was until March 2008; let alone that having one wasn’t that rare.

We all, every single one of us, have this mentality that ‘it won’t happen to us’. Whether you would like to admit that or not; it’s true.

I am a ball of anxiety and any one of my good friends will tell you that one of my many ‘talents’ is worry about something that may never even happen, or jumping to the absolute worst case scenario especially when the scenario involves my kiddies.

When we were called in to receive Ethan’s test results ; even I didn’t imagine an incurable rare disease – I pictured Autism, some sort of learning disability or even a physical one …as the appointment went on I even pictured childhood Cancer , not a rare disease like Hunter syndrome.

I mean, come on? Who would ever think a rare disease can touch their loved ones, their parents, their kids, their friends…

I remember begging the doctor to start him on chemotherapy because that’s all I knew when the words terminal and life limiting were used in one sentence.

I recall being angry; there was no history of rare diseases in our families, let alone something as rare as hunter syndrome. Surely there would be a history of it somewhere along the family tree…

We had Down Syndrome in our family, I was angry that my son didn’t have Down syndrome instead…that’s what a diagnosis of an incurable terminal rare disease will do to you; it will bring you to your knees begging for something that therapy or chemo can possible help or cure.

I pleaded with the doctor to test for Cancer at one point during our appointment, because I knew even with something as heartbreakingly sad as Cancer my boy had a fighting chance …I wanted to exchange one heartbreak for another.

When the doctor tells you to bring your child home and love him for the time you have him, your world and your view of the world changes, dramatically.

It doesn’t happen overnight but gradually you become some sort of an advocate, a parent on a mission.

Sometimes the mission is just to be heard by the professionals, or to be understood by your family and friends but other times it’s about telling that unsuspecting parent that this can happen, a rare disease can come out of nowhere and rip your heart to pieces.

It becomes about trying to educate people about rare diseases and how they are often misdiagnosed simply because the doctor never heard of it or the parent thinks that maybe they are overreacting to their child not hitting certain milestones.

It becomes about getting the medical professional to recognise the early signs and symptoms of such rare diseases as Hunter Syndrome (my personal circumstance).

It becomes about encouraging parents who know, deep down, that something isn’t quite right, to speak up and not be afraid of the letters that come after names. A parent knows.

It becomes too, on some level , if I’m totally honest , about letting the world know that your child is important , that your child matters whether they have a terminal illness or not.

Wear that you care this February – 28th — Rare Disease Day.

Wear Jeans for Genes or share this post in order to create awareness for not only our kiddies but for parents out there who are facing the unknown and for the medical professionals who need to become quicker at diagnosing such rare diseases as Hunter Syndrome.

Thank you all for reading.

Why I will Continue to Use the Term, “Special Needs”.

I know that this term is not something every parent uses and many have strong feelings about not referring to their child with, “special needs.”

I can understand and respect this view, but I will still use the term special needs when it comes to my son and I’ll tell you why.

According to Merriam Webster, one definition of special is: being other than the usual: additional, extra.

First and foremost, our son is a child. He is a sweet 4 year old little boy who loves books and snuggles. He has a heartwarming smile and a giggle that can make anyone’s lips turn up at the corners.

He throws fits when he doesn’t get his way and can be very jealous of his new baby brother. He loves Daniel Tiger and one of his favorite things to do is shake his head “NO.”

But his needs are extra.

His needs are additional in comparison to his siblings and many other children we are in contact with. His needs exceed the needs of his 4 year old peers.

To be honest, almost everything about him is “other than the usual.” He needs medication administered daily; medication that is vital to his health.

He is tube fed nearly 24 hours a day with a GJ tube, needs his blood sugar monitored, and has his G port vented all night long.

He has vision loss and moderate to severe hearing loss; with these two combined he qualifies for deaf/blind services in school. He attends occupational, physical, and speech therapy several times a week.

He cannot walk so we have to carry him and transfer him all day long. He is starting to sit for longer periods of time but he struggles with balance so he needs to be supervised at all times.

He is nonverbal and has yet to say his first word, but uses a communication device to make requests, say “hi,” and communicate many other wants and needs.

Along with the daily things we do for our son he also sees multiple specialists to monitor his condition.

I am sure I could go on and on regarding the seemingly small things that we do on a daily or weekly basis that are much more due to his disorder.

Dressing, teeth brushing, toileting, bathing, the list goes on and on. And when he’s sick the list is even longer.

Everything is additional. He has special needs. Extraordinary needs.

There is no getting around the fact that our son is not like his peers.

There is no hiding the fact that what we do on a daily basis doesn’t come close to what most parents do for a typical child his age.

And using person first language, I will say our son has special needs. He is not my special needs son…he is my son with special needs.

His needs are extra. Additional. And most definitely other than the usual.