Sunday, September 13, 2020

The mum who judges VS the mum who 'sees'

Recently, we had a tough day of hospital appointments. 

As many of you are aware, the hospital is not a great place for kids with ASD. It is always busy, loud, over-crowded and there is a lot of waiting. But now, due to COVID, there is no toy area or play therapists wandering around to offer even a momentary distraction.  

Emma was not content to sit and wait, so every chance she got she would sprint in the direction of the consulting suites and barge in to someone else's medical appointment (if I was a moment too slow). Other times, she would just wander quietly and aimlessly into the corridor before throwing her ipad and launching into a run. As I gave chase for the 28th time and told her to sit on the chair, I realised we were providing entertainment for the 50 or so other people waiting anxiously for their appointments.

I wondered what they were thinking while they watched....

"Look at that wild kid - why isn't that mum disciplining her?"

"Some people shouldn't have kids if they can't control them..."

"I'd smack my kid if she behaved like that" or "Thank God MY child doesn't behave like that..."

Sadly, these are not phrases I imagine people are saying, these are actual comments I've heard. And, sometimes the disapproving stares communicate more than words anyway. 

I've become very good at ignoring them. Well, most of the time. 

Once the doctor was ready, we went into the consulting room and Emma (knowing the drill) climbed up on the examination bed. The doctor then realised we had to go to a different room for a weigh / measure (due to COVID)  and this was NOT okay with Emma as it was unfamiliar. As we walked back through the waiting room, Emma's anxiety sky rocketed and she launched into a full meltdown in front of all the people sitting there. She screamed, she spat, she tried to grab any people or things she could get her hands on and then finally just threw herself on the ground wailing.

I can't pick her up anymore so after my desperate attempts to encourage her to move failed (and the doctor was waiting), I awkwardly dragged her into the room. Once in the new room, she continued to scream and throw everything she could get her hands on. At one point she even managed to remove the doctor's very nice (and probably expensive) high heel and throw it. That was a low point.

As we were leaving, mentally and physically exhausted, a mum (stranger) came up behind me and put her hand on my shoulder. She looked me in the eye and said, "I just wanted to tell you you're doing a great job". My heart flooded with thankfulness. It was such a small, simple gesture from a fellow mum but its impact was huge. I felt like someone had lit a candle in a dark room as a reminder that 'light' still existed and all was not bleak. 

As I smiled and said thankyou, her eyes filled with tears. She explained that she had been watching me and felt overwhelmed with how hard it must be. Her mumma heart filled with compassion and she felt compelled to reach out. 

My heart was softened because someone actually 'saw' me.

Most mothers only 'see' what is superficial - the behavior, the defiance, my apparent lack of 'control', her unbrushed hair....sometimes they see through the lens of their own insecurity and self-centredness and use my child to build themselves up or compare their child to mine.

But it takes an exceptional person, one who is not afraid to feel things deeply, to truly 'see' another mum and allow their heart to be filled with love and compassion instead of judgement.

Which mum are you? The one who 'judges' or the one who 'sees'?

If I'm honest, I'm probably a bit of both at times. 

But I know which mum I want to be.

When you see a mum struggling with a child with behaviors, what is your response? Are you the mum who thanks God your child is not like that or the mum who recognises the child is having a hard time and offers a gentle, reassuring smile that communicates I 'see' you. 

Be THAT mum

When you overhear a mum 'lose' it when a child is struggling with behaviors, do you awkwardly ignore them and think "I would never speak to my child like that" or do you stop and offer assistance? Sure, you risk getting a mouthful and they'll probably say no, but I know my frustration has been diffused in the past by someone 'seeing' me and offering help. 

Be THAT mum

Mum's often stare or comment disapprovingly when they see the siblings supporting Emma. I don't know if many have stopped to consider how different, and challenging their life is having a sibling with a disability. Instead of judging me, choose to be the mum that recognise that family dynamics are significantly different when you have a child with significant needs. How about recognising the 'caring' role they take on out of love for their sibling and encourage them? 

Be THAT mum.

When your child spots a disabled person or a child acting strangely and you witness the 'raised eyebrow' stare or a rude comment (and that's okay...they're still learning) you can pretend not to notice or you can seize the teachable moment and explain that some people are simply, different and encourage them to say 'hello'. 

Be THAT mum

When you hear of a family going on a holiday without their special needs child, do you judge how terrible that is? Or does your heart break a little to think of what it means for that family to not be able to include one of their own children in those special memories like you can. 

Be THAT mum

When your special needs mum friend is bit short, snippy or vague and disconnected, do you assume they're not 'coping' and rush to tell someone of your 'concern'? Or do you recognise that this mum carries a heavy burden (not her child but the fear and anxiety associated with their child) and might need a bit more of your patience and understanding than your average mum friend.

Be the mum that chooses compassion instead of accusation.

Be the mum that offers to help instead of walking the other way. 

Be the mum that chooses to build others up and not tear them down. 

Be the mum that chooses love instead of judgement. 

Be the mum that you have needed others to be for you.

Be the mum who 'sees'. 

Be THAT mum. 

Saturday, June 27, 2020

Special Needs Parents Don't Get Ice-cream

Regarding Emma

Over the summer break, we went away with friends to a caravan park. 

One afternoon, everyone decided it would be fun to take the kids for a walk down the main street to get an ice-cream.

I love ice-cream. But I couldn't go.

Firstly, Emma doesn't have the physical stamina to walk long distances and she is getting so darn big that it's impossible for me to carry her when she gets tired.

Secondly, it's not safe for Emma to be so close to a main road as she has no awareness of danger. It's especially dangerous in a large group where I know I'm likely to get distracted and it only takes a second for her to escape and run for the road.

Thirdly, we can't take Emma to the shops as, like the eternal toddler she is, runs around impulsively grabbing everything and then has a meltdown when denied what she wants which could be anything from a lolly to the EFTPOS machine.  I'm not overly concerned by the judgement that a 7 year-old writhing on the floor attracts; but I AM concerned about her breaking or damaging something that belongs to someone else.

Lastly, Emma still needs to be spoon fed certain foods and ice-cream is one of those. Most people don't know this as it seems to attract the most disapproval from others, particularly other children, so we never do this publicly. Spoon feeding and nappy changing are 2 things we keep private to try and maintain some dignity for Emma.

I watched everyone walk away and realised I was quite literally alone.

I wanted an ice-cream.

I looked at Emma sitting on the camping chair; she was blissfully unaware that she was missing out. Thank God for that, I thought. 

I reassured myself, "It's okay. It's just an ice-cream"......

But it wasn't just an ice-cream. It was a 'cold' (pun intended) reminder of the isolation that special needs families face, not because we're rejected or lack support, but simply because we can't do what other families do so easily. 

We get left behind: literally and figuratively.

We knew that by attempting this camping trip that it would be a struggle with Emma and we knew it would mean being confined to the caravan park.

It was a dark reminder that as life moves forward for everyone else; time is standing still for us. 

As people move forward and celebrate their children's achievements, we are still stuck at home with the 'baby' enduring sleepless nights, nappy changes and tantrums but without the redeeming 'cuteness' or hope that the stage will pass. 

While most families can enjoy activities together,  our family has no choice but to be constantly split in two with one parent left behind with Emma. 

It was at this moment, one of my friends who I assumed had left, appeared and said that she'd decided to stay with me. I literally breathed a sigh of relief. Her gesture felt like healing ointment on my aching heart. 

I admitted I was trying really hard not to feel sorry for myself. She suggested we walk a few metres over to the camp kiosk and get an ice-cream.

When we got there, I noticed the freezer had Ben&Jerry's which is actually my favourite ice-cream.

Suddenly, I had a profound thought which I believe was God speaking to me.

 "See, you didn't miss out on an ice-cream. It's just different"..........

I became teary with a sense of joy and thankfulness that I hadn't missed out; my father God was with me and had simply provided a 'different' ice-cream. It wasn't the one I wanted and it was different to the one everyone else got - but it was a pretty awesome ice-cream that I loved. 

Finding the joy and hope in 'different'

If, as special needs families, we focus too much on what we miss out on we will live in a perpetual state of resentment towards our child. Feelings of loneliness and isolation will threaten to blind us from seeing the joy in front of us. 

We must learn to 'tune in' to the goodness in our experience (and others) rather than just 'tuning out' the judgement, rejection and loneliness.

It's a subtle difference but has a profound impact on how we feel. 

If we simply 'tune out' the hurt, we go into survival mode: where we find ourselves in a constant state of putting out spot fires which can be exhausting (mentally). Alternatively, we can learn to 'tune in' to the goodness, hope and joy in our experience, and move from simply surviving to thriving. Joy is strong and powerful and blankets (covers) the ever-present spot fires of our experience.

In this way, we are free not just to accept, but enjoy the ice-cream we've been given!  

Whenever I feel my thoughts descending, I stop and find something to be thankful for. 💗

If I feel lonely in my experience, I remind myself of all the other mum's out there walking the same road.....

If I'm upset because someone has been unkind, I try and bring to memory a time when someone was kind and my heart was warmed.....

When I feel like all my strength is gone, I remind myself of how God has always renewed my strength when I've been drained....

When I find myself saying, "I can't do this", I remember how many millions of times I've said that and yet I've just kept on doing it....

And, I will keep on doing it.  So will you. 

Because whether our ice-cream is the standard variety, gourmet, a Bubble O'Bill, soy flavour or vegan.....'s still awesome - it's just different. 

Sunday, June 10, 2018

To the mum of the child without special needs......

The other day, I watched Emma at the playground climbing up a rope ladder. She moved slowly and deliberately making sure her arms compensated for her weak leg muscles and that her grip was strong enough to compensate her poor balance that could see her topple off at any moment. 

I watched with pride as she struggled, persisted and made it to the top.

What an achievement for a child who was told she may never walk!

With a renewed sense of confidence, she came down the slide ready to attempt the challenge again. 

But this time, two children appeared who also wanted to climb. One boy began screaming angrily at her to "Hurry up!" while the little girl closest to her began pushing her in frustration. Emma knew she would fall if she tried to move too quickly so she froze and held on for dear life.

Before I could intervene, I watched as the mother came to the rescue of her little girl, exasperated at having to wait, and literally picked Emma up and moved her out of the way to let her daughter climb to the top.

Surprisingly, I wasn't angry or even annoyed.

I was perplexed and disappointed.

Mum! You just missed a valuable teaching opportunity!

Mum, this was the perfect scenario to teach your child to be patient and wait their turn.

But, instead you just taught your child that HER needs are more important than the needs of others.

Mum, this was an opportunity to teach your child self-control.

But, by not correcting her exasperation, you inadvertently taught her that intolerance of others is okay.

Mum, this was a perfect opportunity to explain to your child that some kids are different and cannot climb as quickly as you.

But, by not stopping to take your daughter aside and explain special needs, you perpetuated the cultural narrative that disabled people are 'less' - that it's acceptable to simply push them out of the way.

See, it's not only my daughter that is negatively impacted in scenario's like this..........'s yours as well.

See, every time you allow your child to ignore a child with special needs, exclude them or let them make a demeaning comment without correction - you empower unkindness in your child.

Of course, no parent does this intentionally which is why I'm writing this.....

When we fail to actively teach kindness and compassion and lovingly correct and discipline behavior that does not respect the rights of others, we deprive our children the opportunity to see the incredible power they have within them to make a positive difference in the world - to do good, to help, to give, to love....

Mum, in that one simple moment you thought you were empowering your daughter by pushing the disabled kid out of the way. 

But, you actually dis-empowered her by failing to point out her power to do good in that situation - by failing to teach her that instead of responding with frustration she could have chosen to say, 

"It's okay. Let me help you."

As adults, we must be very careful about the cultural narratives we model and instill in our children. This means confronting our own intolerance, judgment and attitudes towards those who have special needs or a disability. Our children will mirror our own attitudes and provide miniature reflections of our indifference and ignorance towards the needs and value of others.

In conclusion.......

Mum, if nothing else, my disabled child provides you with a powerful opportunity to teach your own child love, compassion, empathy, kindness, patience....and that people who are different are not 'less'.

Mum, as you take the time to talk to your child about mine, you give your child an amazing opportunity to learn about their power and capacity to help - to bring change, hope and happiness to others. 

Mum, in future, please don't encourage your child to ignore or push my disabled child out of the way - instead choose to seize the teachable moment to help your child grow into a better human being. 

Your child - and mine - will thank you.