How To Introduce The, ‘Just Right Challenge’, To Your Child’s Therapy

Maybe you thought we were being a bit mean!

As a children’s physiotherapist, the most exciting (and often most challenging) part of my job is finding ways to keep children of all ages motivated and interested through, “play”, for long enough to do exercises or activities in a way that is designed to help them to learn and grow to the best of their abilities.

A lot of thought goes into the way we play with your child and the best way to help them achieve their goals.

Activities need to be realistic and achievable.

They should never be so hard that your child gives up, refuses to play or even worse, ends up in tears; but they do need to be challenging enough that they don’t get bored or aren’t really trying.

It’s all about trial and error and finding that happy place where your child is pushing themselves to do their best while still having fun and enjoying the experience (the best is when they don’t even realise that they are, ‘working’!).

This is what therapists now call the, ‘Just Right Challenge’ – originally described in those terms by Jean Ayres, Occupational Therapist (OT).

OT’s are taught to find the ‘Just Right Challenge’ for individual children with sensory integration challenges.

But it’s equally a really useful way to think about progressing activities for all children, with or without any type of additional needs.

Whatever it is that we’re working on, whether it’s building up tolerance to movement, strengthening legs for standing transfers or developing head control during tummy time, the wheels are always turning, trying to figure out how to meet your child where they are and then push them just enough to make a positive difference while still keeping it fun.

Tuning into what motivates your child is key with developing their, ‘Just Right Challenges’, and you as a parent are the most qualified to know what motivates your own very unique little person.

If there’s a specific toy that your baby loves and responds well to, it can be helpful to bring it to therapy sessions so that your therapist can use it to motivate your child during therapy.

Similarly, if your older child adores playing memory games or is obsessive about the local football team, these little nuggets of information can be so valuable when planning therapy sessions and activities so please do share!

The, ‘Just Right Challenge’, doesn’t need to stop when you go home!

Here are some pointers to remember:

1. The activities that you use as motivators need to be what’s interesting to your child at that particular time (people, food, toys, absolutely anything your child is in to).

2. You may need to change the motivator throughout an activity to keep your child interested.

3. Whatever object you use do check that it is in the correct place for your child to actually complete the challenge. It may need to be closer, higher, lower etc and you might have to move it throughout the task depending on your child’s specific needs.

4. Give your child as much help as they need to complete the activity with success and then decrease your support as they get better at doing it themselves. For example, if your child would like to engage in a posting activity then you may need to support hand over hand initially or start with a large object and ‘post box hole’, gradually introducing smaller, more challenging activities.

5. Support your child to complete with success the very last part of the activity and then once they have succeeded they will be more motivated to try it again by themselves.

6. Praise, encourage and try again!

7. If you, your child or both of you have a less successful, ‘Just right challenge’, day, please don’t be disappointed. It happens to all of us from time to time!

In my experience as a physiotherapist and mother, the single most motivating thing for your child (no matter what his or her difficulties may be) is for you to get involved.

The more you participate in whatever it is that your child is doing, the happier and more successful they will be and the quicker they will reach their goals.

No matter how much I set up activities for my kids to get on with, they never enjoy them as much as when I play with them (much to my frustration when I need to be getting on with cooking dinner)! They just get so much more out of the challenge with me offering some sort of support.

The aim of the, ‘Just right challenge’, is to empower your child and for them to feel proud of their accomplishments.

They help children to learn that challenges and pushing themselves can be rewarding and beneficial rather than frustrating and intimidating things to avoid at all costs!

I’ve no doubt that if you have any questions about how you can provide, ‘Just right challenges’, for your child that your local therapist will be delighted to answer them.

Have fun learning and growing with your amazing child and thanks for reading!


“Why Won’t Mum Stop This Hurting Me?”

It started just like any other day.

I woke up in a good mood, I won a wrestling competition with Daddy on the bed, and had a yummy bottle of milk.

Mummy gave me some nice breakfast and got me dressed.

I shuffled over to Daddy ready for him to take me to nursery but he kissed me goodbye and went on his way to work.


Oh well, perhaps today is a hospital day, I thought.

I was right.

Soon after, Mummy got our stuff together and we set off in the car.

I was playing happily with my musical book but I noticed that Mum wasn’t chatting away with me like she normally does.

It had been a much longer journey than usual to the hospital…

I babbled to Mum that I was getting a bit stiff and bored sat in the car seat… but we seemed to have finally arrived.

I looked up and realised this wasn’t our usual hospital.

Mum didn’t seem to know where she was going as she pushed me along the corridors.

She was definitely behaving a bit strangely today, so I tried not to whinge too much.

We went into a room and there was a man that I don’t remember meeting before.

He talked to Mum for a while and I bottom-shuffled around the room exploring.

Mum kept telling me off but I couldn’t help it, there was too much exciting new stuff to put in my mouth and throw across the room!

There were bandages, and some feet made of white plaster, and a real skeleton dangling in the corner!

The man went off and came back with a big white thing with straps.

Goodie, I thought, another toy to play with.

Mum scooped me up onto her lap, where she was sitting on the hospital bed, and opened a story book.

The man brought the new toy towards me and I reached for it excitedly.

But he grabbed my wrists, pushed my arms up and pressed the cold plastic around my body.

Ouch! It hurt but Mum didn’t stop him.

She held me really tight so I couldn’t get away from the horrible man.

It was really hurting now.

I cried out to make him stop but no one listened.

He pinned me down on his lap and pulled the white thing all the way round my body, and he was tugging on the straps at the back.

Why was Mum letting him do this to me?

I cried louder.

Mum gave up trying to read me the story.

The man flipped me over so I was on my back and I was struggling to take deep breaths.

This was so horrible, why wasn’t Mum doing anything to stop this?

I had tears streaming down my cheeks.

I looked up and saw that Mum did too.

The man left the room, mumbling something about ‘getting used to it’.

Mum pulled me in close to her, and I could feel her moving her hands around, trying to find a bit of my real skin to cuddle.

The plastic was covering most of my front and back.

Her tears dripped onto my bare shoulders.

Then she sat me on the cold, hard floor, and I immediately wobbled backwards.

This thing wrapped around my body was pulling me upright and I couldn’t keep my balance.

Mum propped me up again and I tried to stay sat up.

My usual method of movement, shuffling on my bottom, was really uncomfortable.

It was difficult to even reach the floor with my hands as the stiff plastic was digging in to my armpits.

I toppled forward, and planted my face on the floor.

Mum scooped me up and we were both still crying.

The man came back into the room and prodded me, rolled and manoeuvred me around again, and finally, took this thing off me.

Phew, I thought.

That was horrible, but it’s over now.

Mum and the man talked for a while longer and then he put the white object in a bag and gave it to Mum.

Back at the car, Mum put the bag next to me on the backseat.

It remained visible out of the corner of my eye and I found it hard to take a nap, knowing it was there next to me.

I must have slept because the next thing I knew we were home and it was lunchtime.

After lunch, Mum and I played with my toys for a long time.

Mum was being extra nice to me, lots of cuddles and laughs and tickles and all my favourite games.

She even let me watch my favourite videos on the iPad!

I was really pleased to see Daddy when he walked in the front door that evening, and I could tell that Mummy was pleased too.

They had an extra-long cuddle, but then Mummy started crying again.

Dad and I played with my planes and dinosaurs, and then Mum came into the room with the big white object.

I shrieked to warn Dad that it wasn’t a toy, it was for hurting people.

Mum took off my t-shirt and brought the thing towards me, like earlier.

I heard the evil crunch of the velcro as she wrapped it around me.

I struggled and wriggled.

I realised then that I needed to be brave, to show Daddy that I could be a big boy.

And I really didn’t want Mummy to cry any more today.

I sat still while Mum and Dad fussed over the straps.

When they were done, I looked down and inspected my new jacket.

It wasn’t so bad, in fact, I already felt straighter and more supported.

I showed Daddy how I could still bottom shuffle with it on, but I could see he was disappointed about how slow I was.

He put me on my ride-on car and I propelled myself forward; phew, at least I was still able to ride my vehicles!

I realised that the best thing to do was to be brave and not cry or make a fuss.

After all, it wasn’t so bad, it was actually quite comfy, and I bet none of the other kids had a shiny white shell like mine!

Mum took it off me, and we had tea, bath, story, snuggles, and bed.

I might have been imagining it, but I think Mummy and Daddy were being extra nice to me.

I got an extra-long go on the iPad and custard for my pudding!

Well, I must remember to be big and brave every day, if this is what happens!

“Doctor, Please Just Let Us Try” – Raising a Child with a Disability

Let us try.

Allow us as parents to try everything and anything to help our child.

Don’t shut us down when we say we are going to try acupuncture or massage or even hyperbaric oxygen therapy.

Yes, please let us know the risks but if there is no danger to our child then please support our decision.

Don’t give us every publication stating that there is no research to support our choice.

You see, sometimes the only thing we have is hope.

We don’t need to hear more, “can’ts”, or, “won’ts.”

There are days when the only thing we can hang onto day after day is faith.

We don’t want to get to the end of our journey and have any regrets.

I don’t want to ever question myself and say what if we did that or I wish we had tried that!

I want to know in my heart that we gave our son every fighting chance to succeed.

Our son is global developmentally delayed and at two years old he’s still not sitting, scooting, or crawling.

I’m trying it all.

We’ve flown across the country and spent thousands of dollars for intensive therapy.

He didn’t walk out of there and he didn’t even sit, but he did make progress.

Any progress is a step in the right direction in our eyes.

I walked in there expecting nothing and walked out with a newfound excitement and energy about the possibilities for our son.

You know why? They believed in him. They gave me hope.

So, please let us try.

Let us try and possibly fail.

We know not everything is going to work for our children.

We know that there may be treatments or therapies that have low probability of success, but let us be the ones to find out.

Please stop looking at his chart and telling me all the things he most likely will not do.

Put the chart down and look at him.

Look at his sweet face and determined spirit and tell me to try.

Tell me you would do the same if you were in my shoes.

Tell me that there are other treatments that may not be supported by scientific evidence by we have every right to give them a try.

Give us hope.

Not unrealistic expectations, I’m not asking you to lie.

I’m only asking you to allow us to try, fail, and hopefully succeed.

The Shocking Trend of Kids with Special Needs Being Left on School Buses

No Apology!

The Education Authority responsible did not apologise to Sophie or her family for a month.

They only offered an apology after they were contacted by the press this week.

Not only that, but the Education Authority even lied to the press when they said they, “took immediate action and contacted the pupil’s parents to offer an unreserved apology”, as the Belfast Telegraph reported.

In fact, as you can see in the image below, the authority only contacted the family for the first time via email on November 19th, the day after the story was originally reported in the print edition Fermanagh Herald, the family’s local newspaper.​

We really don’t want to attack individuals – it would be irresponsible and unreasonable without knowing all the details.

But this issue is serious, and it’s not the first time it has happened.

There have been two recent cases in Florida and another in Texas where children with special needs have been left on buses, all in the past few months.

Thankfully, no harm came to these kids.

This is not always the case.

Earlier this year, a California family was devastated when their son was left behind on a school bus and later died in hospital.

Another incident, again in California, saw a young man with special needs die after being left on a bus for hours in the middle of a heatwave.

How can this be allowed to happen?

Surely a more robust procedure should be in place to monitor children, especially those with special needs.

A human life has to be the most precious cargo there is.

It is ridiculous to think that a postal delivery could be treated with more respect than a vulnerable person.

But if this was a driver delivering Amazon parcels there’s no way his cargo would be left unchecked and lying around in his truck.

There are even specific alarm systems available for exactly this scenario on our buses.

Some buses already feature systems that require the driver to walk to the back of the bus to deactivate an alarm at the end of a journey.

This means they need to make their way through the entire vehicle and will hopefully notice any child left behind.

Not every school bus will be able to include this – policies and budgets that vary from school to school, state to state, and from country to country.

But every bus has a driver, and often an assistant, who need to be properly trained and guided by the processes of the authority responsible.

Every organisation that supplies these services must review their processes to make sure they are protecting the vulnerable children we place in their care.

It’s the very least we can expect.

First Haircut Tips for Kids with Special Needs

It is heartwarming to see this barber give so much care and patience to doing his job, and it got me thinking about our own little boy getting his haircut.

Our son was born with a full head of hair, and by two years of age has already gotten a handful of haircuts.

We have tried a few different strategies to make it the most relaxing and positive experience as possible.

Some times worked out better than others.

Here are a few tips I can offer if you are anticipating an upcoming first haircut for your child with special needs.

1. Timing

Thus far we have had the most success with taking our son for a haircut right after he finishes an hour and a half of physical and occupational therapy.

He is sound asleep 9 times out of 10 and barely flinches while the barber cuts away.

This also makes the haircut go by much more quickly as our son is very still, and we all know sitting still is important at the barbershop.

2. Child-Friendly

Another recommendation for coming out of the barbershop with little to no tears is to find one that specializes in children’s haircuts.

If there isn’t one available in your area check with friends and family with children to see where they take their children to, and who they do and do not recommend.

If you are able to find a place that does a great deal of children’s haircuts you will be happy to find they quite possibly have a treasury of distractions such as fun chairs, toys, televisions with children’s shows, a mirror or comb to hold, etc.

Does your children’s barbershop cost a little more than a haircut at a discount kind of place?

Happy children = #WorthEveryPenny

3. Entertainment

If you cannot find a great children’s barber shop or have a negative experience the first time around do yourself and your child a favor and pack your own distractions!

I am not a huge advocate for lots of screen time, but there is a time and place for the ipad.

Take your pick: screen time or scream time!

Bring coloring books, stickers, a sucker, whatever you think may be great distractions and novel enough to capture your child’s attention for a few minutes.

4. Prioritise Comfort

Bring any equipment along with you that your child can successfully sit as upright as possible in and have the barber cut their hair while sitting in the familiar equipment.

We have brought our son’s Tumbleforms chair along several times and it has helped tremendously so he feels both comfortable and is in an ideal position for getting his hair cut.

What are your barbershop success stories? Any tips?

When Social Media Becomes Too Much – Raising a child with a Disability

Nowadays, it’s as simple as choosing which social outlet you would like to communicate through.

It is readily available at anyone’s fingertips…by computer, tablet, cell phone or even watches!

Crazy, I know.

Having this outlet can and often does encourage one to share more than what is needed with the world.

I did it myself just two days after receiving Oliver’s diagnosis.

I bared all to the world about my son receiving his diagnosis of spina bifida and what that would entail for us then and for the future.

At that time, I only had a Facebook.

It then grew to Snapchat, Instagram and Twitter.

I slowly let go of Twitter and Instagram, sharing my main informational posts to Facebook and pictures of the family on Snapchat.

There were many times where I wanted to let go of Facebook but was convinced to stay because I had involved so many people in our life.

They enjoyed and looked forward to my updates on how Oliver was doing with treatment, therapy, and all his appointments.

It was through groups on Facebook that I could ask questions pertaining to his health, making it more convenient than calling his own doctor.

Life turned into communication through wall posts, shares and comments.

I would hear countless times through my mother or Aaron that my face was always in my phone.

I was never just in the moment enjoying things for what they were.

I had to snap, share and post anything and everything.

I was addicted to say the least.

Not just addicted to social media…shamefully, I was addicted to the attention and kind words or comments left by family and friends.

It was not until the day my step son told me he wished I was more present and less on my phone, that I realized my problem.

I just could not even fathom how to unplug myself from something I was on 24-7.

So I did the only thing I could think of; I deleted my Facebook, permanently.

With a son who has different needs and a diagnosed condition, I was finally able to spend more time with him and actually in the moment of life.

I continue to update his blog and update through the Firefly blogs, but have given up the constant, daily peeks into our life.

Now this is not to say that anyone with a social media account is never present in life, but just my own personal account with losing control.

I want people to be more involved with us, if they would like updates on Oliver.

I don’t want him to be somebody they follow through internet posts.

He is so much more amazing and quirky in person, than I can portray through words online.

My only recommendation to those who may be reading this, is to take a chance and go a little prehistoric. Lol.

Make that phone call to a distant relative, or write that letter to a long lost friend.

A Letter of Support to Myself – Raising a Child with a Disability

First of all; sorry.

I am sure you are sick of being called mum.

You are more than just mum.

You are your own person.

Please don’t forget that. People in the street see you with the buggy/wheelchair – to them you are mum.

To the nurses in the hospital you are mum. It’s hard for them to learn every name.

To yourself and your child, you are mum.

But you are more than that.

You have your own interests, you just don’t always get the time to explore them and indulge.

You have your own identity, you have your own worth.

To one little person, you are the world.

Sometimes you feel like you are either fading away into the crowd, totally unnoticeable, not worth a second glance.

You’re just a mum going about your mumly duties.

Other times you stand out like a sore thumb – screaming unappeasable child, unkempt hair, eye bags, mucky clothes you probably wore yesterday.

You don’t look as bad as you think you look.

People aren’t watching you and judging, they are watching in admiration as you expertly attach the giving set to a feeding tube. Those people have never seen a feeding tube before.

They think you are a wizard, they are probably in awe of you and your incredible child.

That dribble on your shoulder is a medal of honour, a badge that says to everyone out there, “I am a special needs mum. I am a tube feeding pro.” (Even though last night you accidentally fed the bed and shot medicine up the wall.)

Your role is not just mum.

It is paediatrician, dietician, speech and language therapist, occupational therapist, nurse, gastroenterologist, neurologist and much more.

You work tirelessly to make sure everyone is alive and well.

But you aren’t just all of those things, you are you.

You are just like everyone else, but with some extra skills and responsibilities.

You do it so well.

When you sit down at night feeling guilty about the state of the house, counting down until the next administering of meds and preparing of feeds – you are exhausted.

You worked hard today, and yet you are on your laptop researching neurological irritability.

It’s so easy to feel guilty, to feel like you aren’t doing enough.

You are doing enough.

Okay, so the standing frame didn’t happen today – do it tomorrow.

You can’t do absolutely everything you are told to do all of the time, sometimes you do just need to go out for a brew with your mum and daughter.

Those carbs you ate today, those sugary snacks you threw down without a second thought?

Don’t beat yourself up.

You didn’t have the time or the energy; it’s a coping mechanism.

Right now you are going through a hard time and the last thing you need is to be beating yourself up about your weight.

Do what you need to do to cope.

One day when the time is right, you will get back on that health kick, you will do charity runs with your dad.

It will be amazing. You will be pushing Amy in her wheelchair because after all, you and her are a team.

You made six phone calls today.

Four went to voicemail and the other two were answered by a rude secretary who had no empathy for your situation.

Don’t feel defeated. No one understands what it is like to be you.

That secretary is clearly not having a good day, don’t take it personally.

She doesn’t know she was the 5th phone call on your list.

She doesn’t know that you too…are effectively a secretary.

You have more folders than her, more paperwork than her.

Shrug it off, wait for your return calls.

I know you are frustrated, I can see the paracetamol and anxiety medication by your bedside.

I see your bedtime tea drink in the kitchen – you really want to be able to sleep tonight.

Today you cried.

You felt helpless, you felt like today was groundhog day and you’re not sure you can get through another day.

You got through this day.

You can get  through another day.

Things won’t always be as hard as they are right now.

You don’t want to fight for equipment, for tests, for diagnoses.

You want to ask for what you need and get it.

But you know things aren’t that simple. Nothing worth having is easy.

You can’t appreciate the good times without first feeling the bad times.

The prospect of her needing more surgery keeps you awake at night.

Your friend’s child also needs surgery – you are worried for them.

You are compassionate.

Yesterday at the coffee shop you saw that child the same age as yours.

She was looking around very alert at the waiters, the lights, everything.

She was a relaxed happy little girl.

You felt a twinge inside that hurt, you know that your little girl is not that easily appeased.

To a passerby you look lazy for having the ipad on.

But the reality is you are working so much harder than a lot of parents!

You tried every toy in the bag, you charged the ipad overnight.

You are doing what you need to do to enjoy time out of the house.

You feel guilty about that pain you felt that things are harder for you and your child.

Don’t feel guilty.

What you have is unique.

No one else could understand, what makes us different makes us beautiful.

What you have?

It is beautiful, even if it doesn’t seem that way to strangers watching in on your world.

Some of your friends have disappeared from your life, relationships with people you thought were close have fizzled away.

This isn’t because you are boring, it isn’t because you’re a flake. It’s because people don’t always understand.

You are on a very different path to others and they don’t always know what to say or do.

There are only so many times you can cancel on someone before they give up.

But you know what?

The ones who matter, the ones who understand – they will stay.

And one day in the future, when things are easier, those people will get to enjoy the happy you.

People don’t deserve you at your best if they can’t be there with you for the worst.

Your other half looked tired today.

I know how he feels.

You feel like you hardly see him.

His work hours are long.

You miss him dearly.

He’s an amazing partner and an amazing dad.

You’re jealous of the time away he gets, you love your one day at work per week.

You love that drive to work in the morning with your own music on, time in your own head away from responsibility and hospital appointments.

You also feel guilty for needing that break.

Don’t feel guilty. You need this.

So what Im saying mum…Sorry, I called you mum again.

Cez. Your name is Cez.

You’re doing really well. Everything is going to be okay.

Keep drawing those meds, keep fighting for that equipment, keep making plans with friends who matter, don’t lose your identity, keep raising awareness, keep advocating for your child, keep drinking that coffee, keep taking those pills, look after yourself so you can look after her.

Smile in the face of adversity, but also cry when you need to.

This journey can be hard, but it is the most rewarding one you will ever go on.

Special Needs Parenting: “Sleep” You Say…?

A hand that maybe points to the headful of grey hairs.

A comment about an unhealthy caffeine intake.

For our children… they sleep differently.

When Alex was born, and we had no notion of what was to come, we noticed he slept a lot.

In those heady days before we barrelled into life with a child with disabilities we were just grateful that our second child slept well, so that we, having just moved, were able to unpack boxes, put up shelves and start constructing our new life.

Looking back, and talking to other families, it’s clear that – had we been more on the ball – that was our sign that something wasn’t quite right.

Sleeping too much, or too little, well, there’s your tell-tale sign.

In fairness to Alex, he kept sleeping well – but not excessively – right up until about 3, and we were so grateful for this.

Because, however bad the day, what new unexpected news was delivered to our door, we knew that at 7 o’clock he’d go to bed and we could… stop. Just for a little.

Then, almost imperceptibly, it went wrong.

We noticed that it was every day, not just the odd night, that he would cry for 3 hours before he went to sleep, our evening ruined, our eldest daughter sleeping in our bed as she couldn’t hear him there.

Or, if he did go to sleep as normal he’d wake at 1, 2, 3 in the morning and scream for 2 hours for no obvious reason.

We found our house locked down as we went to bed early to prepare for the night to come or one of us would drive him round town so the other could sleep.

This was madness. And then it stopped again.

But the following year – in a very cyclical fashion – it came again and it was worse this time because we were both working and Alex was at school and there was no slack in the day for anyone to catch up on oh-so-needed sleep.

Without sleep… anyone with a new-born will tell you that your mind closes down, you can barely function and all the fun is sapped out of your life as you just try to put one foot in front of the other and not shout at anyone.

I started crying on everyone again, a sure sign that things couldn’t continue.

Our Health Visitor once again came my aid and referred us to our paediatrician urgently.

I love our paediatrician as she’s just so practical… and recognises need.

Alex was prescribed, “circadin” – a low dose melatonin.

I know it doesn’t work for everyone, but I’m so thankful that it did for us.

He slept.

We slept.

And life… swung back to normal.

Special Needs Parenting: Invisible Illness

What do we think of when we think of chronic and life threatening illness?

Why is it that people see children like Von, see how normal he looks and then wonder why we are so protective of all aspects of his life.

I think about the many people out there that also struggle with this, and how hard society is as a whole on people with chronic illness.

I’m not sure what people expect people to look like who are chronically ill.

Admittedly, I even questioned what I thought it was before I had Von.

I assumed it meant the person likely could not walk, or they had to have machines hooked up to them to live.

I thought of people with ventilators or trachs, and I didn’t think of the millions of people that every day fight diseases that threaten their lives but they look just like you or I do.

They don’t, “look“, sick.

Sure some of them might have paler skin, some may have machines they need to survive, but most of them don’t look like they are sick.

I often hear people say to me, “But Von looks so normal“.

Well, of course he looks normal.

He is a human with hands, feet, arms and legs.

He has two eyes, a nose and ears too.

It’s not about how the outside of his body looks, but rather about how the inside of the body isn’t functioning correctly.

There are millions of diseases out there and once you actually learn about how much has to go right in our bodies to function, you truly become amazed at how any of us are born healthy.

It’s truly a miracle there are SO MANY healthy people considering all the systems that have to work in order for us to live.

I had no idea what an endocrine system was before Von was born.

I didn’t know that a pea sized gland controlled the entire hormone and steroid level of your body.

I didn’t realize that when you are stressed out your body releases a natural steroid called cortisol.

I had no idea cortisol actually keeps you alive when you are stressed out.

There was never anything in biology classes which taught me that the lack of a single hormone or steroid could actually kill you.

I don’t recall a time where I even knew what the thyroid did, and if left untreated the thyroid can cause permanent brain damage as the body cannot metabolize anything that it receives.

Heck, what was growth hormone even for beyond getting taller. No one ever mentioned to me that it also helps all of your systems from your heart health, cellular growth in bone marrow to helping your body stabilize blood sugar.

I really had no clue that missing a tiny little gland the size of a pea could truly mark a person as life threatening.

Once you get the diagnosis, we heard a lot of, “Well, there is a medication for it. So, you give the medication and he will be fine.”

If only it were that simple.  Most people with chronic illnesses can take medications that help, but they are synthetic and they are being given manually versus naturally made.  We have to manage the medication levels so tightly that blood is drawn 4 times a year, and when Von is ill he is very high risk for hospitalization and life threatening adrenal crashes.

Adrenal Insufficiency kills people every single year. It’s a rare disease most people have never heard of, and it’s not widely understood by doctors outside of the endocrine profession.

For many of our specialists, Von is one of maybe 2 or 3 patients they’ve ever seen with this disease.

For most though Von is their first ever patient they’ve had with no pituitary gland. That’s pretty scary if you think about it. We are relying on people that have only read about it to help us manage it.

I was told recently I’m just an over protective parent that almost lost my child, and so I’m feeling guilty about it.

The person told me the reason I’m keeping Von in such a secluded bubble is because I’m just scared he will die.

But that he will actually be just fine.

I was told I’m doing damage to him because I’m going to keep him home.

I wish with every fiber of my being it was that simple.

I wish I could take him out and let him play with toys. I wish he could just be in the same place as all the kids.

Instead in public I cringe when I hear coughing, my stomach drops when I find out there is a stomach bug going around.

I know of families that have lost their children with AI from stomach bugs and the flu.

Even with the medication, their bodies are still weak and they still are truly not suppose to be alive.

So, in theory, we are giving him medication and enabling him to live.

Without the medication, he would die.

Some people have attempted to go off the meds, I recently read a story about a man in the UK that was tired of taking his steroids. So one day he stopped. He was dead within in 3 days.

So when I’m questioned about our choices, this is why we are so diligent about Von’s care.

This is what INVISIBLE illness is.

It means there are people like Von that are missing huge parts of their body systems, and they can’t handle illness the same way a healthy body would.

They don’t rebound the same.

Colds, the flu and intestinal upsets can kill them.

Medicine is only palliative.

He will never be cured.

Invisible illness is real.