It Could Have Been Me…

We were very excited to be pregnant together, me with my second child and her with her first.

My due date was 17th June, with hers being the 24th June.

Of course, as if it was a competition, I had to beat her to the maternity ward, and my son John was born on the 3rd June, with David following shortly after, on the 18th June.  I, luckily, had a relatively easy labour, while she was not so lucky, with a very long labour and a long recovery.

However, I remember for the first six months after the births, I was constantly telling her that she had the model child.

He slept a lot, and barely grumbled while my payback for the easy labour was a child who liked to cry and had horrendous colic!

I recall saying ‘oh you are so lucky’ as I was exhausted, but now I realise how inappropriate those early comments were.

Fast forward to today.

David and John are both 6. David is profoundly disabled with an undiagnosed condition, while John has reached all the milestones expected from him, with an additional added ‘cheeky attitude’ thrown in.

Every day, I look at my best friend and think why her.

It could have been me. It could have been you.

It could be any of us.

This time, however, it was her. My best friend. The strongest, yet most emotional, of all my friends was given David.

I often wonder: Could I do as good a job as she does?

I simply cannot answer that.

We simply don’t know how strong we are until we have been tested. I know that I am very fortunate to have her as a friend, but I am also, in some small way, almost grateful that I have not been tested with her role.

I am simply unsure if I could do it as well as she does. Her role as mum, doesn’t just involve packing lunches, checking teeth have been brushed, that clothes are clean while trying to ensure shoes are matching.

Her role is effectively managing numerous Doctors appointments, filling in forms that are specifically designed to make you feel stupid, ensuring all therapies are looked into, so David misses out on absolutely no opportunities, but also being his full time therapist and his advocate, all the while holding down a permanent job, and being a mother to her second son an adorable 4 year old.

So, if I feel lucky does that mean my friend is unlucky?

The Benefits of Confiding in a Stranger When You Are a Special Needs Parent

You look to your right, and your family doesn’t want to be bothered listening to your story or dealing with your hard days.

Leaving you with feelings weighing heavy on your heart.  You turn to your left, and if you’re lucky if you have maybe one or two friends left but they suddenly don’t have time for you anymore, and they certainly can’t relate to your days or challenges raising a child with special needs.

You are completely alone. Or so you think for a moment.

Then you start to search out that common element that will connect you to others experiencing exactly what you’re going through.

You find comfort in confiding in strangers, many of whom you will never meet, talking through your day.

What makes this such an easy connection to pour your heart out to people you don’t know?

It’s because confiding in strangers is safe.

You are able to lighten your emotional burdens without worrying about the reactions of others or having your honest feelings come with consequences that can complicate real-life relationships.

You may even find yourself confiding in a stranger in a grocery store, and give more details about your child and your difficult day at therapy, and then you catch yourself realizing that you just disclosed a lot of personal information, that you likely otherwise wouldn’t have all because you needed to vent, to release the stress of the day on anyone – someone that you’d never see again, who you could just dump upon and move forward.

There is no neighbor to think they’re living next to that crazy mom with a special needs child or that co-worker that thinks you can’t handle a work load because you are too stressed at home.

It reduces the judgment factor significantly by offering personal disclosures to people you likely will never connect with again out in public.

Confiding in strangers whether that be through social media, special needs mother’s groups, or even strangers that you happen to bump into at the grocery store, serves a form of therapy and an effective coping strategy for stress.

Imagine that it’s much like you are talking to the entire world and no one at the same time.

The freedom to just express anything that you need to – both good and bad.

It is a very necessary coping mechanism that exists within the special needs community.

And it helps us to feel connected to a world that is very distant and not always inclusive friendly.

There are many benefits in confiding in strangers: When your problems become burdensome to others: It’s that awkward moment you know when you speaking to your mother on the phone and you get that verbal cue that she simply doesn’t care what’s going on with your day.

Doesn’t matter that two therapists resigned assisting your child this week, that Medicaid has denied to pay your therapist, and social security thinks they’ve overpaid you and are demanding a repayment of thousands of dollars, or that your grass is dying because you don’t have the time to go water it yourself while caring for a child that requires 24/7 care.

The I’m too busy, talk to you later, good luck to you tone.

Too many friends and family begin to sound like that broken record that plays my heart is bleeding over and over again.

Unloading to a stranger whom you’ve never met before offers you that first time shot at instant therapy.

They haven’t heard your daily complaints and challenges before, they don’t know your history, or how often bad things might happen in your life. This person will likely never hear your story of your difficulties ever again.

It’s a great opportunity to dump your feelings, vent and run from any potential judgment in your direction.

Objectivity of Strangers:

As special needs parents we have a tendency to always question the success of how we’re doing. Is my child making progress in therapy? Am I doing enough? Am I doing too much?

Special needs parents have a variety of concerns like is my child experiencing seizures in the night? Should I find a nutritionist for feeding concerns? The average person might think you’re worrying unnecessarily and being a bit paranoid.

Above all, we need advice that you can’t get from your best friend with typical children or your family that has zero experience with what it takes to raise a child with special needs.

If you hunt out other special needs parents who are experiencing a similar set of circumstances on social media they have the potential to look at something from a fresh perspective.

Suddenly your issues aren’t so trivial and there is an instant connection.

You are able to soak in a variety of different ideas and solutions without making you feel like you’ve lost your mind. Likewise a stranger has the potential to take your problems, challenges and concerns more seriously.

It’s Safe:

Confiding in strangers offers you the safety of an anonymous confession without the consequences and backlash that often follows. Things like disclosing you accidentally pulled out your child’s Gtube, dropped your child when you carried him or her down the stairs, and forgot evening medications and you feel terrible.

It allows us the opportunity to express how bad we feel that we failed at something without the consequences of someone pointing the finger that you made the biggest parenting fail on earth.

And strangers simply keep secrets.

It’s between you and someone you’ve never met and you can let go of it tomorrow without it haunting you.

This can be the best outlet and release to all those pent up feelings, emotions and thoughts.

Reaction to Disclosures:

Without question most special needs parents are familiar with having to deal with various forms of judgment.

By investing and engaging with strangers offers a comfort zone in which you know that someone who doesn’t really know you will not be able to judge or be shocked by your disclosures since they don’t know you personally or your character.

Rarely is it possible for a stranger to hold something against you. It offers the freedom to just be you.

Judgment free without adverse reactions.

Initially, it may feel a little awkward to confide in a total stranger, but you will quickly find that how you are received is likely to be better than if you offered face to face communication about what is on your mind.

You can find freedom in being true to your personal beliefs, the choices you feel most comfortable with, decisions that you find appropriate for your child with special needs all the while seeking judgment-free refuge in disclosing your innermost thoughts and feelings. And the likelihood that you share a commonality with a stranger could be high.

Ultimately you will find a safe refuge and a place to turn when all feels lost, and the world doesn’t care about your trials and tribulations with raising a child with special needs. Offering you the reassurance that your feelings, thoughts, fears and concerns are valid.


To Best Friends – The Special Needs Parent’s Secret Weapon

Recently, a stomach virus struck my children and me.

The bug only plagued my oldest son and me for 24 hours but poor Matthew wasn’t so lucky and after two days became severely dehydrated.

It’s difficult to think about how much pain he was in once we arrived in the Emergency Room and they tried to start an IV.

After what seemed like an eternity the amazing crew of doctors, nurses and medics were successful.

During the nightmare of finding a vein my best friend called my cell phone several times.

Then somehow the phone in the observation room rang and it was my husband saying my best friend was trying to call me.

I smiled to myself because I knew if I didn’t want to be harmed, I better call her immediately.

Of course she made me feel better instantly.

Due to his condition it wasn’t long after the IV fluids were started that the doctor informed me they were admitting Matthew to stay overnight at the hospital.

I let my husband know we weren’t coming home and asked that he pass the information along to everyone.

Within 30 minutes we were being transported from the ER observation to the pediatric floor.

I had to sit in the hospital bed and hold Matthew as they moved him for safety reasons.

When they wheeled us into the room, there already waiting with a latte for me was my best friend.

She was already crocheting a hat for her godson.

She stayed with me until dinnertime making sure to leave me half of her salad in case I was starving overnight.

By the way, I dropped my dinner on the floor of that hospital room so that salad was a lifesaver.

The next morning, though Matthew was obviously feeling better, he still wasn’t eating.

I sent my bestie a text saying that I knew they wouldn’t be discharging Matthew for another day.

A few hours later she appeared at the hospital with a suitcase filled with everything a girl could need to feel human again.

Shampoo, conditioner, and lotion – this woman thought of everything.

It doesn’t end there because she came back after work too.

All of her actions during Matthew’s hospital stay meant the world to me.

I don’t think I could ever put into words how grateful I am to have that kind of love and support.

Not only is her love for my son unconditional but for me too.

To all the best friends out there, keep up the good work because my best friend is setting the bar pretty high.

Boosting Daddy-Daughter Bonding

Her dad did change her nappy and he did help me bathe her, but he could never get her to fall asleep.

He could not calm her down.

I always had to do it.

It was like he could not bond with her.

Or she didn’t want to.

He really did try but she didn’t want anything to do with him, or anyone for that matter.

I think it also had a lot to do with communication.

She still battles to communicate with some people.

But they don’t know how she does it.

But my husband and I both know by now what she wants.

Things started changing when she was about 18 months.

It was like a switch went on: “hey, dad is cool too and can help me with things”

She now allows dad to give her bottle.

He can put her to sleep at night and put her down without any hassle.

Okay, maybe once a week it does not work.

But more often than not, he wins the battle between Jade and sleep.

When dad puts her to sleep, I listen by the monitor just in case dad needs help.

It’s really funny to listen to them sometimes.

Jade has her bottle and about 10 min in the fun starts.

She starts talking to her dad in her own language.

She pulls on his chain if she can get hold of it.

He shows her videos on his phone and if she does not like them she screams at him.

Then he tells her she needs to sleep.

She laughs.

Eventually he gets her to sleep.

Or calls me for back-up.

Adapting Christmas Traditions for Our Daughter

Our local shopping centre has a ‘North Pole Cottage’ set up – quite a sight in the sweltering Australian sun – where children and their parents wait in line for a thirty-second chance to tell Santa what they’d like for Christmas, say “Cheese!”, take a candy cane from the bowl and a glossy photo card from the printer, and be on their merry way.

Can you see this working for you?

Neither could I.

I don’t like to trade on Charlie’s disability for special treatment.

In fact, we’ve only just started using our parking pass because until recently, I didn’t feel that we needed it enough.

We’re lucky that Charlie is still little – we don’t need to negotiate Santa’s grotto with her wheelchair yet – but by the time we got to the front of that line, she would have been beside herself with frustration because she has no idea what we’re waiting for, overwhelmed by the excited crowd, and my arms would have been completely dead from holding her.

I had heard of a shopping centre that dedicated some time specifically to children with special needs, but it was nowhere near home.

So, I decided to ring the shopping centre and ask what arrangement they might have made for the same.

To my surprise, they had nothing in place for this.

However, they were very kind and understanding and offered to make Santa available to us prior to the official opening time.

In this way, we managed to avoid the crowd and take a few extra moments to get Charlie settled and facing the camera etc.

We weren’t able to get a smile, but she wasn’t crying and she was looking in the right direction.

Here’s the result – aren’t they lovely?

​(I may be slightly biased).

This has taught me that sometimes all I need to do is ask.

Charlie doesn’t have to miss out on these traditions just because we need to approach them differently.

Ask, and ye shall receive.

Seems appropriate at this time of year, eh?