“Look at his face!” the little girl in the waiting area of the doctor’s office exclaimed rather loudly and then started to giggle.

Her mother (or caregiver), who had been checking out of their appointment, mumbled something that sounded like, “Oh. Yeah” and hustled towards the exit with the little girl, who was still looking over her shoulder at my son.

My son, who was happily playing with the toys strewn about the waiting area, completely oblivious to what had just transpired.

In a way, I envied him.

My son has a rare genetic condition called Oto Palatal Digital Syndrome. His facial features are a little different, despite the two traumatic jaw surgeries he has had.

I also have OPD, and so does my 12-year-old daughter. We have had our share of awkward encounters; staring, whispering and pointing.

I have the unique perspective of experiencing this on both ends: not only as someone with a facial difference but as the parent of kids with craniofacial issues as well

Dealing with it as a mom is a lot harder.

The Mama bear instinct in me wants to rage at whoever is poking fun of my child, but the logical part of me sees it as an opportunity to educate.

The mom in the doctor’s office scurried away before I could even say “Hi!”, but I’m not judging her. At best, she may have just been in a hurry.

The worst-case scenario is that she was extremely embarrassed, had no clue what to say, and just wanted to get the Hell out of there.

I totally get it.

My kids have said some mortifying things in public that have made me wish I had the power to make myself invisible.

I too have hurried my child away for fear they would make an already embarrassing situation worse, or simply because I had no idea how to respond.

Then one day when my son was an infant, a little boy approached us at a school event for one of my older kids, and asked rather bluntly (as kids tend to do) “What’s wrong with his face?”

I tried to explain his genetic condition to a five-year-old the best way I knew how, after which he pointed at my son’s tracheostomy tube and asked: “What’s that thing?”

“That’s called a trach. He can’t breathe from his nose and mouth as we can, so this helps him to breathe.”

“Oh. Ok.”

“His name is Chance, and he’s 9 months old.”

This little guy talked to us for a good five minutes before he ran off to join his friends, and I realized that although his approach was no-nonsense, he was genuinely curious and interested.

Now when I catch people staring, I wave and/or say Hello. Sometimes they get embarrassed and look away, but many times it has opened a door for a conversation.

There will always be awkward moments as a parent of a child with special needs.

Along with OPD, my daughter also has autism, and we have had more than our fair share of public meltdowns. Many times, I use humor to deal with stressful situations, and these are no exception.

I’ve led her by the hand, wailing and screaming, through the grocery store singing the theme to “Mr. Rodger’s Neighborhood” loud enough for the people who were staring at us to hear.

“It’s a beautiful day in this neighborhood… It’s a neighborly day in this beauty wood….won’t you be my neighbor..”

Several people chuckled; the ice was broken.

Sometimes it’s hard to hold back because people can say some ignorant and judgemental things.

I still have my moments, but over time the “Mama Bear” instinct has given way to a need to advocate and educate so that when people see someone with a facial difference, they will take the time to learn about and get to know the person and hopefully realize they are not that different after all.

 

The short answer to that is yes… I probably am too easily offended. But let me ask you a question.

So, you’re at the shops in a queue. There is a group of adolescent high schoolers in the queue too.

One of them says to another “Ha, you mong”.

Do you intervene? Do you explain that actually, that’s not polite?

Truth is, they know it isn’t polite. They perhaps don’t understand the magnitude of those words and how they may be received by others around them.

Today it’s harmless tomfoolery, or that word I have grown to hate… “banter”. If you look up that particular word it says “a person who is stupid, or has learning difficulties.”

You see to me…. By implying a cognitively able person has a learning disability is like saying; “…to me, a person with a learning disability has less value or purpose to live… therefore I will derive humour from that.”

What if someone says “Oops, I forgot my purse… I’m sure I was dropped on my head as a child.”

Is that appropriate? Is this insulting to those who have had a brain injury? Or is it a simple innocuous comment not intended to cause controversy.

Since having a child that sustained a severe brain injury at birth I have sort of had to re-evaluate my understanding of language.

It’s a delicate balance sometimes trying to find the balance between coming across as overly sensitive and a nuisance, or actually a good advocate for someone with a disability.

Social media has given us the term “snowflake” and there seems an army of people keen to tell people that we are now in a generation of people who are too easily offended, or get offended over everything.

Recently in the local news, someone complained about a precarious display of boxes of wine in a supermarket.

They quite rightly pointed out that a child could run and knock it and cause fatal injuries.

The comment section was as you would expect… a huge divide in opinions. One side saying that people should keep their children under control, and others arguing that actually you can’t always be 100% in control and that some children may have autism and not see the potential danger.

I commented on the post (foolishly… why don’t I just stay out of it!?) to also point out that someone using a mobility scooter or wheelchair, or indeed a pram, could experience difficulty in navigating around this.

I have had several incidents where we have gone into a supermarket and encountered nothing but continuous obstacles on our journey around the shop.

Obstacles that wouldn’t have phased someone not pushing a wheelchair.

I have on a few occasions gone to the store manager and explained that putting roll cages and constant promotional plinths in the middle of wide aisles are having a negative impact on our shopping experience.

I have then gone on to take advantage of my platform and add that it would be great if the shop could consider installing a changing places facility.

One person took an instant dislike to my comment and went on a rant telling me to “get a life” or that in their opinion there was plenty of room for a wheelchair.

I wonder how much experience this person had of navigating a wheelchair around an overstocked shop.

Many people rushed to my defense, but in spite of this, her opinion didn’t shift.

I know that it makes me “that mum.” But actually, people not living our lives don’t always see the challenges.

Unless we confront these issues and bring them to people’s attention then nothing will ever change. It’s about picking our battles carefully.

I find myself constantly internalising my rage at the misuse of disabled bays.

I find myself holding my tongue when I hear someone describe someone as “demented”, “retarded” or “spastic”. Mainly through the fear of the unknown…

I don’t really want a punch in the face. But nor do I wish to hear what used to be genuine medical terms being transformed into derogatory terms used to mock and demean someone.

I remember when I was told that Amy had spasticity. Even now when I am telling someone about her condition I cringe slightly at the term.

There is actually nothing at all wrong with the term, it relates to high muscle tone.

But somehow this word has been tainted by people misusing language.

Because of the way language is used, we are always evolving terms and changing how we speak. What is now known as “cognitively impaired” used to be known as “mental retardation.”

I still find myself fumbling my words when I decide between “additional needs”, “special needs” and so on.

What is a common and friendly term for one, may be absolutely despised by another.

One thing I am often asked is “What is WRONG with her?”

On a bad day I want to say “Nothing is WRONG with her, what are you trying to say?”

But actually, most of the time the person is entirely well-intentioned and just showing an interest in my child and wanting to educate themselves.

Sure, I would prefer if they asked what her diagnosis was, but really it’s just me being protective of my child, my child who actually is how she is and is perfect.

Not wrong… which connotes… not quite right, not as good, something to be fixed.

Her disability is far from invisible and whilst she is not her diagnosis, it is a huge part of our lives.

I know now that people prefer to say “brain injury” instead of “brain damaged”, and if I ever hear someone say the latter, I cringe internally even though I know they said it that way because they don’t realise there is a better way to say it.

I’ve seen the term “brainstorm” change to “mind map” as not to offend people with epilepsy.

Personally, this one didn’t bother me… but that’s the problem… it might be okay to one person and not to another. It’s a complex issue.

Sadly, social media is a platform for everyone to air their opinion and you aren’t always going to see things that you like.

It can be quite distressing to see so much hate and ignorance without even having to leave your house.

I’ve seen people say that “autism is just naughty children”, I’ve seen people say that wheelchairs shouldn’t get priority use on buses, I’ve seen so many things that have hurt me.

Retaliating to these people makes no difference. I find that all it does is make me angrier and angrier to the point that it consumes my every thought and affects my ability to stay calm.

It is incredibly rare that someone with a strong opinion admits fault and apologises, so I am slowly learning that no, I can’t change the world.

I can’t make bad people be good.

I just have to keep my patience, and have a drop in the ocean effect… if I can make one person see disability in a different, more positive way, then I am advocating and doing my job as Amy’s mum correctly.

In some ways, it makes me want to isolate myself. If I don’t go out there I can’t see the harm.

By staying safely in our bubble we can’t witness the cruelties of the world. I wish everyone could see things how I do.

I can see that every person deserves a chance at happiness.

I can see that a lot in the world needs to change and wish people would be inspired to do what they can to achieve this.

I wish that people saw the value in every life and how that having a disability makes you no less.

Until you are part of a minority it is easy to think that people complaining are over reacting or being unreasonable, it’s easy to make snap judgements from a place of priviledge.

It’s something I think about a lot. I am fascinated by language and words.

I could happily spend hours reading a thesaurus or dictionary. I love how language evolves and changes. I love how each person has their own set of words that they use.

I also love that actually… you may not be able to say any words and yet be able to convey so much. It just saddens me to see language being used to offend others whether it is on purpose or not.

This post was never intended to be political, or cause upset or controversy. I realise it deals with some contentious issues and that everyone will have their own opinions.

But if we don’t talk about things they become taboo, and the last thing we need is for disability to NOT be talked about.

We need to amp up awareness and alert others of language and the impact it can have on others, as well as the more physical barriers in the world.

I’d love to hear stories of others on this subject. Have you ever intervened? What did you say? Did they apologise? Is there a word you really hate that others don’t?

The alarm goes off at 5:00 am.  My body is tired. I feel the dull ache in my back almost immediately.

My mind is still exhausted from yesterday, but the alarm is shouting at me to GET UP!

It’s time to administer my daughter’s first dose of medication for the day.

It must be given two hours before her next dose, so I sit up, plant my feet on the floor and drag myself out of my warm, comfy bed.

My husband typically volunteers, but he deserves a break this time.  It’s the weekend, but Saturday is not synonymous with sleeping in.  Not in this house.

I find myself drifting off to sleep again after giving the meds, and confirming that she has soundly returned to sleep. My brain continuously nags at me, reminding me of all that needs to be done in the hours ahead.

I ignore it for as long as I can, but feel guilty with every extra second I lay there.

So, I start the day, and I know it will be busy from that moment on.

It’s easy to find yourself focusing on the aspects that are difficult about your day.

The lifting…the transferring…the meticulously organizing everything for a trip out of the house…the battle I will have with myself over “we should be practicing with our walker today or the adaptive trike”, instead of sitting in our PJs watching cartoons.

Measuring out meds for the remainder of the day…setting alarms to remind me not to forget what time they are due.

Carving out some time to practice communication with our picture cards and the iPad… the list goes on.

However, if you lose yourself in the struggles of your day-to-day, you miss out on the silver linings; the unbelievable beauty that surrounds you.

Others may not comprehend what a day in the life of a special needs parent entails. I imagine they probably wouldn’t want to.

But you know what?  They also can’t begin to fathom the intense blessings that we encounter daily.

Walking into my eight-year-old daughter’s room and seeing her smiling up at me from her special safety bed…watching her stretch her arms up high for me to pick her up…feeling her arms wrap around me tightly as I lift her out and tell her, “Good morning, my love!”

Before I acknowledge any of the items on our long, daily “to-do” list, I get to sit on my sofa and cuddle my sweet, precious angel.

I sing silly songs to her and listen to her erupt into laughter that melts my heart and brightens the day.

I get to see a beautiful twinkle in her eyes and hear her shriek with excitement when I ask her, “Would you like to watch Beat Bugs on TV?”

Those are moments that I deeply treasure.

As our day marches on, I have the privilege of witnessing a miracle unfold as I strap her chunky, clinical orthotics onto her legs and stand her in front of her walker to take some steps.

I am consumed by bliss as I observe her fourteen-year-old brother carefully pushing her on the trike.

As he lovingly ensures that she’s moving at a safe pace, I know how lucky I am.

I’ve been gifted the incredible joy of watching my non-verbal daughter choose the correct colors and shapes as I ask her “touch blue” or “touch the circle” on her picture cards.

Suddenly, my hectic, tiring Saturday becomes a series of silver linings in a seemingly challenging life.

I am completely surrounded by love and light.  Beautiful moments to be cherished and appreciated are all around us…we just have to look closely.

Sometimes, you just have to take a step back and lose yourself in the glorious benefits of this life

Cerebral palsy (CP) is something I knew existed but had only heard about in passing until our daughter suffered from brain damage at two weeks old.

The result, a CP diagnosis when she turned one along with several other diagnoses.

My daughter is classified as having quadriplegic CP. And yes, it basically means what it sounds like; her entire body is affected in some way.

It is not a muscle issue, meaning there is nothing wrong with her muscles.

The problem is the brain is sending the wrong information to the muscles.

And because of that, the muscles can’t do their jobs correctly.

The hardest part of an initial CP diagnosis is that it covers such a vast variety of things. People can be minimally affected, having only a limp in their gait.

Or they can be totally affected like my daughter in which every area of the body is limited in mobility.

For her, she struggles with everything from sitting, walking and talking to pickings up a simple object off a table.

People with CP can have low muscle tone and their limbs almost look limp. Or they can have high muscle tone and their limbs look contracted all the time.

Then there is my daughter who falls somewhere in the middle with varying muscle tone.

Sometimes she looks like she can’t bear her own weight. At other times, she can stand up with support.

You can put her in a sitting position, and she will just fall over. But you give her a little support and sometimes she will sit relatively normal.

When you are given a CP diagnosis, well that is really all you have in the beginning.

Many of our doctors told us that it is up to our daughter to show us how her CP would affect her life long term.

It wasn’t what we wanted to hear at the time.

We wanted real answers. But you don’t get real answers with CP.

The only thing truly known to help people with CP is therapies. So, ever since we received the diagnosis, she has seen every type of therapist you can imagine.

And even now she still has 2 physical therapists, 2 speech therapists, an occupational therapist and a music therapist. She also attends riding therapy on the weekends.

These are the people, who over the years, have made things possible for our daughter that were otherwise thought to be unachievable.

Because of these therapists, a little girl with little hope of ever walking is taking independent steps in her gait trainer.

The same little girl who could not hold on to anything at 1-year-old, is grasping toys and bringing them to the midline.

Because of these people who refuse to give up on her, a little girl who was released from the hospital with a g-tube for feeding is now able to eat some.

She is also jabbering and talking some and she is using a complicated speech device to show off just how intelligent she really is.

The CP diagnosis stinks. When you are handed that diagnosis, at the very least, and if you are lucky, there is a minimal limitation you will have to deal with.

And for so many people it means a lot of nevers.

But it isn’t a death sentence. It is an obstacle to climb in life.

As parents, we want to remove obstacles from our children’s paths because it is hard to watch them struggle. But overcoming life’s obstacles is where real strength and character is built.

People with CP are some of the most amazing individuals you will ever have the chance to meet. I know because I’m raising one, and she inspires every day.

His hand reached up. Gently I held it. I bent down to his eye level.

Quickly his other hand smashed into the side of my face. His boot cracked repeatedly off my shin bone.

For a guy who stood at 4 ft 0 inches he had the strength of an Ox.

He roared in my ear as I refused to let go of his other arm. I began to hum trying to help him regulate himself.

I got closer to him. I moved quickly behind him restricting some of his movement for his safety and mine. He roared for me to let go.

I hugged him securely, letting him feel the weight of my body up against his.

“I will, I will in two minutes” I calmly responded. We stood in the middle of a busy shop rocking back and forth until, finally, the storm had passed.

I remember this particular meltdown for three reasons.

Reason one was that it was over in under a minute. This was the beginning of Ethan learning to self regulate with a little bit of help. This was also the beginning of Ethan having less and less meltdowns.

Reason two is that Ethan had just had carpal tunnel release done on both hands (his hands were in soft casts) I thought that had meant that the casts wouldn’t hurt. I was wrong.

Reason three is that Ethan gave me a black eye. Now, I know and you know that the child couldn’t control himself and didn’t mean it but the general public tend to think that if a woman has a black eye there is only one reason for it.

My poor husband.

He’s not small. He’s an ex rugby player who stands a good head and shoulders above me.

So sit back and relax and read my little tale about that one time my husband had a wife with a black eye and a son who’s both hands looked to be broken to the untrained eye.

“Fug Fug Fug” his tongue was firmly between his teeth now. He shook his head vigorously while stomping his feet.

We both knew that we needed to get Ethan out of the playground as fast as possible.

Back then we were thankful that the general public had no idea what ‘fug’ meant when Ethan would roar it at us. (Yes, it’s that really bold F word)

The playground was filling up around us and we had to get back in ten minutes to collect our other son from his play date.

I was wearing sunglasses despite the cloudy weather as I had had enough of the stares over my fresh black eye.

Ethan ran.

We both gave chase.

We really were always surprised at how quick he could run considering how restricted his joints and mobility was.

There was nothing absolutely nothing more fun to Ethan than getting a chase. We like fools chased him around and around.

I finally caught him while my husband blocked the gate he was planning to escape through.

Whatever way I caught Ethan he spun around and knocked my glasses off.

“Don’t let go of him” my husband bellowed from the gate as he began to run towards us.

I had Ethan in my arms while he tried to swing his head back, almost connecting with my face each time I tried to get closer to my disregarded sunglasses.

My husband was still reminding me; ”You have him, hold him!”

Ethan swang one of his casted arms at me. Remembering the pain of the time that thing connected with my face, I let the kid go.

He won. I didn’t want two matching black eyes.

He ran behind me and wildly into the now silent playground.

My husband ran passed me and grabbed Ethan up in one swift move and carried him under his arm like a rugby ball.

Ethan always loved this move and began screeching with what we knew was delight.

Ethan’s screeches, I should state to be fair to all involved, sounded a little like a high pitch cat, the happier or more excited he got the higher the screech went.

He would then chew his fingers and kick his legs when the happy excitement started to become too much for him to handle.

He was not kicking or chewing, so we knew he was fine and happy.

Both of us relieved and tired after our unexpected workout, we laughed as Ethan declared it was “timed to go” and happily let his daddy carry him sideways out of the playground.

We got as far as the car when I realised I had forgotten my sunglasses.

I ran back.

I ran back to find a few mothers standing around talking about ‘that brut of a man and that poor woman and child’.

“Are you ok?” one of them asked as I got my glasses and tried to sneak away.

“Aw thank you” I smiled, thinking how good of them to ask.

That must have looked odd to you ladies but I assure you my husband isn’t a brut” that was my subtle way of telling them that I had overheard them.

“Ok. And your son’s broken arms?” one spoke up.

“Oh, yeah, no, he hasn’t broken anything, he had carpal tunnel release” I knew I sounded like someone who was making excuses but I didn’t know what else to tell them and I felt compelled to answer them.

They exchanged some looks and nodded at me.

“We can see you got a bang on your eye…”

“Yeah” I felt really uncomfortable but didn’t want to say my son did it nor did I want them to think my husband did, so I said the most cliche thing in the world, “I walked into a door”

“Thanks” I offered as they stood in silence looking at me.

“Do you need anything?” one of them offered.

“Me?” I laughed nervously, which made me think I was making them think that I needed help to escape or something.

“Apart from the winning lotto numbers …” I tried to sound funny or light or anything other than a woman afraid of her husband.

“Thanks again ladies, am thanks, I really have to go” I turned to leave when a hand tapped my arm and a soft voice told me “there is help out there”

I said absolutely nothing.

I figured the more I denied it the more I sounded like an abused wife.

I made my way back to the car to find my husband and Ethan enjoying a bag of sweets.

“Let me guess, I am the number one suspect for the shiner”

“Yeah AND for Ethan’s casts”

Ethan laughed.

“Did you correct them?”

“Yeah but the more I said the guiltier you were looking, to be honest”

“Ethan, I am begging you to never give mammy another shiner. Please. I will take the shiner no problem but don’t hit mammy again in the eye. Actually, don’t hit mammy at all buddy, ok?” my husband turned to Ethan who was now happily sticking his middle finger up at two of the park ladies as they walked parallel to our car.

“Just go!” I laughed.

And that was the last time my husband came anywhere with me when I had a fresh shiner from Ethan – not to say I got them often but I’m pretty sure he connected with my eye on at least two more occasions.

These are the odd or tricky situations we can find ourselves in when we are the parents of children who have special needs.

Even when the general public think they are doing a kind thing they can be still so very wrong; it sure is a hard balance to find for us all.