To the Special Needs Mother: this was you all along {guest post}

For someone who has been part of the Down syndrome community for less than four years, Kat has achieved much and connected with many in that time, whilst also holding down a full time job and being a single mum to two children. I am thankful to know this woman, filled with such passion and dedication and spunk, and it has been an honour to witness her journey over the past four years since having Parker. Thank you, Kat, for all you do and for sharing your words of wisdom here. 


I’m writing to you about my son Parker, who has Down syndrome and changed my life. I’m writing about why you’ll only ever see what you look for. And finally, I’m writing to define what I mean when I say so often that my life changed.

The only thing that changed was me.

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So, of course Parker changed my life. That’s a bona fide understatement. He came charging in that day in the delivery room, turned me on my head and flipped out my pockets. He laid bare every one of my emotions, forcing me to carefully evaluate and analyse myself. He didn’t do any of this personally – he was an infant. And this is where people misunderstand the rainbows and unicorns of legend.

Parker’s only contribution to my state of mind was simply being born a little different. The day I birthed a child with Down syndrome, I was plucked from my role as a typical mother and firmly set in a new type of life.

The period of adjustment was a raw, vulnerable experience. And it was nothing to do with the child in front of me.

My child was doing the same things all the other newborns were doing – sleeping, feeding, smiling, burping. And every moment as I parented him through his early months, MY brain was reaching in the future – evaluating, searching, looking for the meaning, the rhyme and the light at the end of the tunnel to prove to me my life would return to some semblance of normal.

I eventually found what I was looking for – I planned out a new kind of future for my child. I planned a future where he would be in mainstream school, he would be accepted, and loved, and live a life as close to typical and standard as I could manage.

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Of course, time brings perspective. Goals may start as dreams, and turn into plans – but it doesn’t mean factors won’t prevail. Mainstream school may not be the best thing for my son. Other challenges will come up too, forcing my hand and suddenly those goals won’t be as important as first thought.

My son’s life can’t be ‘on track’ for anything right now beyond Maslow’s hierarchy, as I aim to keep my childrens’ needs met. They simply need the basics ticked off – happiness, fulfilling experiences, striving for good health as best I can while keeping their home life secure, and being a strong anchor to return to when feeling vulnerable. Parker will find his feet in the world, just as his sister will and just as I did before them.

Coming to the realisation that I don’t need to know where he’ll go to high school, or how much therapy he’ll need in ten years, was rewarding in itself. It doesn’t mean I’ll stop dreaming and creating joy in our lives. It doesn’t mean I’ll stop working hard on giving him the best opportunities possible. It means I’ve accepted the outcomes don’t matter right now.

And until they do matter, we’ll keep just having fun adventures, Parker and I. On his Facebook page this year, we live streamed the first moment he asked for more tickles. He learned the name of the workmen on his daily walk to school. He accidentally killed an unhatched chick within its shell with his particularly exuberant brand of love and spent that evening loving on an avocado to prove to me he has ‘gentle hands’. He went to hospital for dehydration during a food strike and he smugly pulled out an NG tube at 2am, then proudly woke me to show me his accomplishment. He learned to put pants on and is still learning how to choose clothing colours that aren’t radiant in their flowery or hypercolour glory.

He will never stop having adventures, branded with a little bit extra of… well, everything.

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But my role in his world has been redefined from those early days when all I wanted was my life ‘back on track’ and staying in a zone where I felt comfortable and safe. I wanted to know my future, what it would look like. My role has changed significantly, I now realise. Because back then, I never knew where I was going in the first place. I just knew I wanted what I felt everyone else had – or rather, I wanted to emulate their highlights reel.

The truth is, I don’t know where my life is taking me. I will never know. The loss of beautiful Nicky forced my hand in accepting my child’s genetic diagnosis would never have stayed the biggest thing in my world – because life changes in an instant. We loved Nicholas for the joy we watched him bring, and because he was a soul who deserved and needed to be loved, never simply because he was ‘in the community’. Nicholas was a light, a pure personality and his mother reflected his light perfectly through a pen and a camera. I am eternally grateful for the memories she helped him leave behind.

So I’ll keep encouraging my son to be himself, find his voice, find his feet and smooth the way for his personality to shine. I’ll look for the good in people, as I watch Annie consistently do so well. I practice this daily with my son, and his instant acceptance and love teaches me to look harder to find the purest qualities in others, while moderating my relationships with solid boundaries. I learn this to teach the skill to him in turn.

abianac_042Giving in to this glorious, messy, wild, loving, busy, sleepless, joyful ride of humanity right NOW means remembering the options waiting around the corner never need to be set in stone. In fact, they can’t be. They will remain limitless if I choose them to be in this moment. And that in itself brings its own quiet peace.

Because, we need to always remember humanity is inherently good. People are good. Intent is everything. Don’t ignore the bad, speak up loudly – but know it’s not the norm. Look for the good in the world. Show them when you hurt, when you don’t understand and when they’ve hurt you or yours in turn. Let them see you as a person, and what you’re about. How you can love passionately, and hard, and stay strong on what’s important to you. Show the world you have flaws, and you get scared, and remind them it’s normal to worry about your future and that of your children – while knowing that your worry and fear will never define you.

Nothing has changed in the world that hasn’t generally already happened to someone before us. Our chapter is new – but the story is much the same. So reach out, and find those stories to help you as you write your own.

You can trust the world. It’s okay to slow down, plan for the now, and let the rest work itself out. It’s okay to take a deep breath, and trust the future will march on regardless of your plans.

Because the future inevitably will become the now. And this, too, shall pass.

sometimes favourite memories 
become tarnished before time
but depths drain into shallows
and beauty’s left behind.
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Kat is a single mumma of two, a public servant and a writer. You can read articles by Kat over on her blogs (ParkerMyles.com and Katabianac.com) or on news sites such as Mamamia and Huffington Post. Listen to her talk social media on the Mums with Hustle podcast, or follow Kat and Parker in their Facebook community, Parker Myles.

Beautiful photography by Life is Beautiful.

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Ordinary Miracles: Learning to connect by heart through a dual-diagnosis of Down syndrome & Autism Spectrum Disorder (DS/ASD) {guest post}

While Elisa and I have never met in person, from our very early interactions in an online forum, it was clear she is a woman who exudes love, warmth and empathy, a woman with a strong faith, and a woman devoted to her family. As it turns out, we are both mums to all boys and also have exceptional taste in boys names. Elisa, thank you for sharing your most recent challenges with us and hopefully helping other parents who may be on a similar journey.


It’s funny the things I find myself doing as a Mum…I wonder if you do it too? I notice things about my children, little things and think, “Hmmm” and then I tuck the observation away in my heart and leave it there. I’ve done this with my youngest son Reuben quite a bit as well as with his three older brothers. Whether you’re parenting for the first time, or experiencing something you didn’t expect as a parent, this puzzled-observer thing can happen a lot.

Reuben has Down syndrome. After being diagnosed prenatally with Trisomy 21/Down syndrome at 20 weeks, he was born on March 24th 2011, four weeks before his due date. We journeyed through the early days as best we could, with me researching Down syndrome like a crazy woman, going to the myriad of specialist appointments, joining the Baby Group at Early Intervention and eventually beginning to work with Reuben’s private therapists at around 18 months of age.

I read articles describing the typical developmental patterns in kids with DS and watched as Reuben met many of these milestones, and discussed the ones he didn’t with various members of his therapy team. I was keenly aware of not comparing him to his typically-developing peers, but I also tried to avoid comparing him to his buddies with DS, both in person and online. As they say, every child is unique, and Reuben was and is Reuben – he’s at where he’s at and that’s okay.

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Even though I tried not to notice, I’d observe Reuben struggling to interact with other children or adults in the same way often younger children with DS could. “Hmmmm,” I’d think and tuck my observation away in my heart. These curious little observations began happening more frequently from the time Reuben was about one year old. Socially he seemed delayed – even getting him to get him to smile took a great deal of effort on our behalf but, even while noticing this, I remember thinking maybe it was “just part of Down syndrome.” I noticed Reuben splashing in the bath in a repetitive way on numerous occasions and remember thinking it looked like an autistic behaviour. I mentioned this to Reuben’s early intervention teacher and we agreed it was probably a fun sensory thing to do, quickly dismissing autism as a reason for the behaviour.

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As Reuben grew older, I noticed he found it increasingly difficult to stick at an activity – he’d throw toys rather than playing with them, he’d swipe activities off tables, and would move quickly from one thing to the next. Sometimes I’d notice him rocking his head from side to side as he went to sleep, and doing the same thing when he listened to music. I noticed him enjoy pulling things out of boxes or shelves then put them back in again.

At around 3 ½ years of age, for no apparent reason, Reuben lost all the speech and key word signs he had learnt up until this point. He also lost the ability to feed himself with a spoon. All these things I quietly noticed, unsure of what to make of them but feeling increasingly concerned by what I saw.

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In August 2015, a fellow T21 Mum and I flew to Adelaide for the inaugural National Down Syndrome Conference. Professor Sue Buckley and her team from the UK taught us how to help children with DS to develop language and communication skills, how to learn to read, develop speech, play and social skills, as well as number and cognitive skills and much more. But throughout the conference, as wonderful and inspiring as it all was, I began to feel confused and frustrated, often thinking there was no way Reuben could do what they were suggesting as he couldn’t sit still long enough to learn anything! My head buzzed with thoughts of “What is wrong with him?” “What are we doing wrong as parents?” and “Why can’t he do the things other kids with DS can do?”

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It all came to a head in March 2016 when, in discussions with our Speech Therapist and Occupational Therapist, I said, “What if it’s autism? What if Reuben is on the Autism Spectrum?” [As background to me thinking to ask this question, certain immediate family members have what we affectionately call “Aspie sprinkles” – they have certain traits of Asperger syndrome/ASD Level 1, but not enough to receive a diagnosis of ASD.] When we put the umbrella of ASD over Reuben’s challenging and repetitive behaviours, suddenly everything made sense. This was also the reason why strategies most successful in engaging children with ASD (like DIR Floortime) have been used to successfully engage Reuben. The use of visual supports and schedules at home and school also worked well for him, which is usually the case for children with ASD.

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While I grieved the thought of Reuben being on the Autism Spectrum and all that might entail, I also felt incredibly relieved to have a possible explanation for Reuben’s increasingly challenging and puzzling behaviours. We were put on a waiting list for an Autism assessment with the Tasmanian Autism Diagnostic Service which eventually took place on September 21st 2016. The Clinician diagnosed Reuben as being on the Autism Spectrum stating, “Reuben will require very substantial support (level 3) in term of his social interaction and social communication difficulties. He will require substantial support (level 2) in term of his restricted and repetitive interests, activities and behaviours.”

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At last we had a concrete reason why Reuben has difficulty regulating his behaviour, why he has such strong sensory reactions, and why he struggles to sustain most social interactions. As weird as it sounds, I was so elated to finally have an actual diagnosis that I bought a bottle of Champagne on the way home to celebrate. What is there to celebrate about the diagnosis of ASD you may well ask? I celebrated no longer having to berate myself regarding what we may have been doing wrong to make Reuben behave the way he did, and I celebrated no longer having to question my judgement about Reuben actually being on the spectrum. My mind-chatter of “Is he on the spectrum? Maybe he isn’t after all…maybe, maybe…” stopped. We chose to celebrate all Reuben is and the wonderful life he is going to have. In doing this, I assure you we are not in denial regarding the challenges that may well await us in the future, but we just know will get through those moments with patience, love and support.

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The day following Reuben’s diagnosis, the reality of his increasingly autistic behaviours hit me. Reality hit me harder still when the report from the Assessment arrived in the mail, in all its detailed glory. I rang a friend who has much experience with autism. She compassionately listened as I tearily told her how overwhelmed I was feeling and wisely said, “Knowledge is power and with this diagnosis you now have the opportunity to learn so much more about autism and how it impacts Reuben.” The diagnosis will help me understand my wonderfully complex son and with this understanding I can help others do the same, and that is something to celebrate!

The diagnosis of DS/ASD is becoming more common among children with Down syndrome as health professionals realise it is possible for the two conditions to coexist in the same child. While compared with autism alone, there is relatively little research, information and support available, however, this is slowly changing. Online support groups do exist and information is out there…you just need the time to read it!

If you are ever concerned about any aspect of the development of your child, I strongly encourage you to find a health professional who will listen to your concerns. Keep seeking answers to those “Hmmm” moments until you are fully satisfied you have found the answer to them.

Last Sunday, I went shopping at our local department store and found myself in the toy aisle witnessing something miraculous…an ordinary, everyday miracle…an interaction between a toddler and his Dad. The little boy was excitedly pointing at a toy on the shelf and the Dad was talking to him about it. This beautiful moment came and went without anyone noticing perhaps but me. Shopping expeditions with Reuben are somewhat of a challenge and often involve items being pulled off shelves then thrown onto the floor, if I’m not quick enough to catch them or drive the stroller in the middle of the aisle. My response to seeing this everyday miracle literally stopped me in my tracks with my mouth open, with my heart in awe of such a simple and commonplace interaction most of us take for granted.

Even within the realms of DS/ASD, ordinary everyday miracles occur. Sure they may not happen in the way we are used to seeing them but they still happen…a gentle moment of a little hand resting on yours, an eye-gaze that says ‘I love you,’ a time of playing peek-a-boo or pushing cars on the floor together, or of sharing a moment of silliness. These are all moments of connection – ordinary miracles – connections without words, connections of the heart. These moments, these miracles which only you may witness are yours to tuck away in your heart, and are yours to keep forever.

img_1877And so we will keep celebrating every connection, every tiny milestone, every ordinary miracle, or as the case may be, every extra-ordinary miracle…after all, that is who Reuben is, our extraordinary miracle.

Elisa, her husband and their four boys live in Tasmania. She has a Bachelor of Music and a Certificate IV in Christian Ministry and is currently a stay-at-home-mum and primary carer for their youngest son Reuben. For work experience in Grade 10, Elisa elected to spend two weeks in a Special School, never realising the journey she would find herself on many years later. Elisa has written another post on Mummalove, which you can read here.

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Juxtaposition: the opposing sentiments of a sibling {guest post}

Meeting Lucy was one of those Universe-conspiring moments. I stumbled upon her blog one night whilst feeding my baby and I immediately felt connected to her words, beautiful in their simplicity, describing life as a creative spirit and mother of two (now three!) small girls. It wasn’t until later that I discovered Lucy also has three sisters, one of whom has Down syndrome, and I realised we were both part of ‘the club’. As well as just loving the way Lucy writes, I really value her thoughts on growing up with a sister who has Down syndrome, and feel like I learn so much from her sibling perspective. Thank you for sharing another beautiful, thought-provoking post with us here x


When we were children, we were simply sisters.

When we were teenagers, I was embarrassed and ashamed of that.

When we were in our early twenties, I was a fierce and lethal advocate with a major disregard for other peoples’ perspectives if they weren’t my own (you too?).

In our thirties, we’re at a fork in the road. I’m a mother, a spokesperson. I’m a fierce and loyal advocate, I’m not embarrassed. I’m a bit angry sometimes. I can feel jaded.

But peel away the layers and the incidents and the battles won and lost, and there we are again, having a cup of coffee, talking about life, whingeing about our parents and enjoying the complexities of the day to day. Teasing each other, bickering, laughing.

Just another bunch of sisters.

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It was a day not unlike this one that my mother gave birth to my first little sister. I don’t remember the events, I was only nineteen months old, but I do have a milky memory of the feeling of that time. A curiosity, an unknowing. There is a photo of me peering over the edge of the bassinet to see what is inside. I saw a baby. But not everyone did.

There was something different about this baby, and some saw it as an error. You see, the baby had Down syndrome. At the time I didn’t know what a stir she would cause. What a ripple, what a shock. All I saw was a baby. All I saw was my baby sister.

We grew into children and two more sisters were born. Now there were four of us. They were all the same to me: mostly good playmates, sometimes annoying and each one as loud as the other.

Suddenly we were women, and some of you will know that my sister Emily is married and her husband also has Down syndrome. They live together, just the two of them, and have a small number of support hours each week.

The weird and wonderful thing is, Em is always seen as a success story. She’s mounted up, displayed, she’s parked up on her pedestal:

Independent

Married

Intelligent

Employed

Brave

All the things you thought she was not, could not ever be. She is used to showing other people: This Is Possible. And then? She’s left alone, a job well done, and more dire cases find their way back into the limelight.

I don’t mean to speak unfairly. There aren’t many people in her situation, and as a sister I am immensely grateful for the amount of independence she has been able to achieve and I myself am guilty of elbowing her onto the throne. But I don’t want this to be her peak. Who would? At aged 32 having seemingly achieved everything you ever will?

What I think is sometimes overlooked is the complexity of my sister’s life. For starters, her relationship is, in fact, not just a relationship between two people, but a relationship between two people, their two families and a service provider as the cherry on top. The intricacies of balancing the couple in the middle with those on the sidelines are incredibly multifaceted. We’re all in there getting amongst it, each one of us coming from a different position within the family, with different life experiences of Down syndrome, from varied generations, with different thoughts, feelings and opinions.

It’s complicated.

Recently Mum discovered a pile of towels lodged around the base of my sister’s washing machine. Apparently it had been leaking. She peeled the towels away; they were dried and thickened with old water and mould. She told me about this over the phone and my initial emotion was fury. I wondered why no one had reported this, why no one had helped Em to fix the problem she had obviously attempted to problem-solve independently. What may seem like a simple issue often requires ironing out or workshopping (whose role was that anyway?), while still supporting and maintaining individual independence.

As a sister I often feel stuck between teams; my sister on one, the parents on another, and then the service provider, mostly working together but sometimes not seeing what people in our generation tend to see. I can feel frustrated over a lack of authority but then again not really want it anyway, I shout demands but I don’t always feel listened to, I try my best not to step on anyone’s toes, I try not to pretend that I’m more important in this situation than I am. Sometimes it’s hard to know where you fit, as an adult sibling looking ahead at the road you are walking down, following time and its inevitable events.

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* * * * *

Years ago when Em got married, a film producer wanted to develop a documentary about her relationship. Initially everyone agreed, Emily enthusiastically, as she quite likes the idea of being on the big screen. But then suddenly there was a woman with a camera at one of our dress fittings. After I had finished doing up the back of Em’s gown she asked me, “Could you do that again, but could you get a little closer to her and look at her a bit longer?” The very act of repeating that intimate action of Em trying on her dress for the first time suddenly horrified me. It felt too private to be having these moments filmed for everyone to see. This is our ordinary; not something to gawk at. I imagined jaws gaping, mouths hanging open. I realise this may seem completely unfair of me. My heightened sensitivity comes from a lifetime of listening to inappropriate questions, of prying. The overwhelming feeling of defensiveness and the need to stand up for her bears down on me every time I hear someone make yet another ill-informed comment about “Downs people”. (Yes, we were born in the 80s…)

The one thing I have always wished for is that people just relax a bit about difference. Let’s all just calm down a little. So people are different. So you lead an independent life and then you’re in a nursing home. So you get an illness and you need medical attention. So you are depressed and your next door neighbour has to cook you dinner and take your kids to school. So you have a disability and you need a support worker. So not every kid in the class gets an A+. So you’re blonde and I’m a red head.

The larger issue for me here is not one of sentimentality. I’m not blinded by my love for my sister. I’m not romantic about Down syndrome. I don’t need an extra chromosome in my vicinity to discover challenge or difficulty or difference in life; that comes of its own free will, like it or lump it.

But the cold hard fact is that Down syndrome, for me, is Em. It is the full life she leads and the value she brings to her local community and the volunteering she does and the job she has and her personality and her smile and her thoughts and the friendship and sisterhood and insurmountable significance and richness that she has brought, and will continue to bring, into my life. It’s – she’s – not a project that raises a problem and a subsequent list of solutions.

I can’t help but hope that if people had access to real, true and balanced facts about Down syndrome (dare I mention it? more awareness) that instead of seeing difficulty, disability, despair, they would see the other side of that.

I hope they might see the value of bravery in the face of hardship, the cheering after battles won, the scars and challenges brought by diversity, but ultimately the strength and the beauty and the preciousness bound up in individuality in an increasingly insipid and self-serving world.

I hope they might see a life that is fresh and raw. A life that is real and worthy, both to its owner and to all those lucky enough to find themselves inside the frame.

Emily and her nieces

Lucinda is the mother of three small children and in between school drop-off and life, she writes. She is passionate about disability culture, community development, parenting, birth choices and simple living. You can find her at Motherwho and on Instagram.

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