Sunday, October 04, 2015

Down Syndrome Awareness Post 2 - Fragility

Below is the link to an earlier post. I wrote it when the twins were little and the trauma of their early ill health is still fresh and raw. I wrote it as a form of therapy - to carthetise the wounds - to heal. Now 10 years later I have to say that the healing has proceeded and there are many aspects of this earlier post that I'd edit out today. In fact I'm a bit embarrassed by some of it - but it is a part of out story and so I will leave it as is for now.

Instead I shall change the context from which it is read. Falling pregnant was a struggle. For Phil and I there were lots of times of great sadness just prior to finally expecting our twins. Deep dark sadness where we clung to each other, murky scary depths which I felt and struggled to explain to him. But we did it. Falling pregnant didn't end those fears though - as I have already said Twin 1s heart defect put paid to that.

Both babies had serious life threatening illnesses before they'd cracked 6 months. Life threatening. It felt as if our parenting idendities were forged in fire, yes we stood strong and together. I have been to the edge and Phil was there with me. Together we willed our kids through and pulled through ourselves. There are still scars. The fragility of life, the sinking feeling of terror can be roused too easily. It isn't really about Down Syndrome though.... advocating in new situations for Hannah is emotionally exhausting - but it isn't because  she has Down Syndrome - it's because we need to help others understand and overcome their concerns and fears about her having DS. That's where as twee as some of the DS Awareness posts can be (and I am definitely  guilty of those) they are essential.

DS Awareness ideally supports the voices of people with DS - to be heard and responded to. Often due to the nature of the disability it is family and friends carying the baton, advocating for people with DS and fighting for those opportunities. for that audience.

So when very cute indicviduals with DS are in your news feed - remember - it's an important start...because it enabes individuals like Madeline Stuart to strut her stuff on NY catwalks and it just might one day enable  both my children a secondary education where learning; belonging and being valued are more important than chasing marks whichever end of the bell curve you lie on.

Thursday, October 01, 2015

October 1 Awareness - Fear

October is "Down Syndrome Awareness Month" and once again the optimist in me thinks I'll give it a crack - raising awareness, promoting inclusion - for diversity generally and Down Syndrome in particular.

For me, the journey began with fear. We were told that twin 1 had a complete AVSD (atrioventricular septal defect) - in other words - a huge hole in her heart meaning that instead of 4 chambers her tiny heart - at the size of my thumbnail had 1. Oh - and then the cardiac paediatrician asked if we'd had any prenatal testing...cos about half the babies he'd seen with this congenital heart defect had Down Syndrome.

Then all I remember is the feeling - fear, mixed with terror. We drove home stunned. Phil went tot he corner shop and bought me a family sized block of chocolate which I consumed that afternoon. He took up smoking. We cried for a week. As I cried I sewed....a patchwork cot quilt of the alphabet. There was no way that quilt was anyone's but Hannah's. My Twin 1.

And then after we'd regrouped (mostly).... I prayed. Mostly I prayed for my baby to live, and also sometimes for her not to have DS. Mostly though I desperately wanted her to live, whoever she was - I wanted to get to meet my daughter. In the image above - my twins are 10 - and we are visiting Mary Mackillop place with my Dad. I give thanks for my two monsters every day. I still know fear - but I have learned that fear of difference and the unknown alone is misplaced. And I know that facing those fears is liberating, exciting, amazing and enjoyable - yes - FUN is the best way to describe the results.

Tuesday, August 18, 2015

One step closer

We have listened to the presentation regarding the new 'special school' opening next year. No it isn't for us. We have now had 2 meetings at my preferred High School for Hannah - and I still prefer it for her. In fact although I know it won't be easy, I am actually looking forward to it. The principal and special ed teacher seem very good.

Tuesday, June 09, 2015

Looking for Checklists and Answers

We are thinking about it about high school in the Dock. Yup.  High school!  Do i need to say more?  Surely you're already planning to provide some comfort and destressing stratgies for me because if you are reading this you probably understand only too well the heightened stress levels involved in such thoughts.

I can hardly believe it myself. And to make matters worse we are planning on going to an information night for a new special school this week and we have an interview with one of our two preferred local high schools in 3 weeks time.

So my worries are many but essentially they all revolve around doing what is best for Hannah. Just wish my crystal ball wasnt quite so murky!!

This afternoon i googled 'how to know if i should choose a special school ' My search revealed some helpful links to sites with checklists of what to consider but not anything conclusive enough for me.  Best advice was to stop worrying about how it might all work for Hannah and focus on the outcomes we think are a priority for her to work towards in high school.

Hmmm. What is the aim of the next SIX years in formal education?  I wonder.  And how can i truly consider a special school for a kid tat has been educated inclusively in  regular classrooms since kindy?

I tried to get Hannah 's view on things. No easy task when her answers are so important and i need to draw out her views whilst trying not to persuade or lead her in any particular direction.  I tried asking her aboutbher dance classes cos she goes to a regular one (where most of the dancers are younger than she is and she also goes to a disability one where most dancers are around her age or older.  Which didshe prefer and why?  If she could go to a high school with kids like those at Nikki's dance or one where all te students found learning a bit difficult (like the disabilty dancers) - which would she prefer and why?  Its a loaded question especially for a kid with an intellectual disability,  worth asking for sure but not really enough to basevmy decision on.  For the ecord she chose the inclusive regularvsetting 'cos i think mixed is better,  they are better at dancing'.

And so my pensiveness continues,  i really need to mull this one over,  it isn't going to be easy but i have to believe it will be alright in the end.

Monday, June 08, 2015


Hannah's first taste of bowling was on school camp this year. She loved it - so today the spy family hired some fancy shoes and went ten pin bowling. It was loads of fun although I think I'd have fared better if they'd given me the option of sides up too!

Sunday, May 31, 2015

The Joy Play Brings

Play is Children’s Work

In 2004 I gave birth to two beautiful babies. They had been in my dreams for years but like all our children eventually do – one surprised me from the very beginning. Twin 1. The one I cried over while she was inutero. All our children surprise us – we marvel at how our dreams and their reality can be so different, yet so right. Many parents are more fearful of the turbulent adolescent years than the baby stage – but not those parents whose baby is born with ‘special needs’. Our fear is the here and now.

My daughter woke us up with a start. Nowhere in my wildest dreams did I imagine the babies I had longed for and dreamed of for so long would be less than my fantasies. Hannah taught me that she and her brother are so much more. She is MORE of everything. Extra chromosomes, extra struggles, extra fears, extra joys and extra laughter.

Pregnant with twins - the beer is not mine - and it wasn't long before there was not enough room on my lap for the poodle!

I had always wanted children. I had dreamed about their soft warm cuddling arms and squishy sloppy kisses for years. Finally – twins. I was in the middle of sewing a fun alphabet quilt for one of the cots when the first fantasy was hit – Twin 1 had a heart defect. An AVSD that would require repair early in her life. Then the fantasy was destroyed – twin 1 would probably have Down Syndrome.

Five weeks later I am in the special care nursery gazing at the two most beautiful babies I have ever seen, still not quite believing that they are mine. I cuddle, smile and play with them. They gaze back in that wide-eyed newborn way. Each day I leave home before 6am so that I can get to the hospital for their first feed and to spend time with them when they are awake and playful. I stay until their dinner feed and then reluctantly, after a day of simply being with them, I leave.
Two weeks later my husband and I run from the hospital like escaping criminals – finally the babies are ours. Home we go. The little cottage which we have been preparing these past 9 months is home. There are matching cots with animal themed bedlinen. A colourful mobile hangs from the ceiling. On top of the chest of drawers in the corner is a collection of soft toys (welcome gifts from friends and family). There are colourful quilts made with love by myself and my mother for them to lie on and play on. It is bliss.

Just six weeks later we have to relinquish ‘Twin 1’ - Hannah - to the heart surgeon and his team. We are terrified. Hannah is all trusting and thank God when she encounters post operative complications, she is all courage. Here a kindly nurse brings her a Fisher Price aquarium to hang on the side of her bed in the intensive care unit. The same bed with the ‘Christmas Tree’ of many many drugs she has pumping through her system to help her recover. Slowly we regain our daughter, we see the familiar light return to her eyes. We see her watch that mobile. She likes it. She reacts to the colourful fishies, the soft light, the bubbles and the music of the sea. One of her aunts duly finds a replica to place in her Christmas sack that year. I still have it. It gave her comfort and reminded us of life outside of the hushed sterile environment of the hospital. On Boxing Day she returned home with her father. I stayed in hospital with her twin who had become ill. We returned home a little later. Finally to all be together again.
The number of toys continued to grow. So many friends and family had given the twins gifts. We felt surrounded by their joy and support. We now had a physiotherapist, a speech therapist, an occupational therapist and a special education teacher. All part of the Early Intervention service we joined to help us with Hannah. The physiotherapist shows me how to roll up a towel and place it under Hannah to help her develop better head control – while singing and playing with a colourful crinkly caterpillar. A little later she brings an old tyre inner tube into our little house – for Hannah to sit in so that she can swat more easily at her toys. The colourful gym mat with hanging toys is one of her favourite things.

Our first ‘family holiday’ post surgery was down south with some wonderful friends whose children cuddled and played with my babies and allowed us to catch our breath after the past incredible 12 months. We took them down to the beach and let them just lie on the gorgeous kiddy picnic mat that had been gifted to them by one of their aunties.

Not long after that Early Intervention began in earnest. The physiotherapist comes with a huge exercise ball – for Hannah – not me! Together we bind her legs with tennis sweatbands that I have sewn together – and merrily we start propping her up on it singing “we’ll go this way and that way, forwards and backwards, across the rolling sea”. Hannah loves it, she smiles happily and as the song continues through most of her early years she grins and signs along. I sing it too – we are on the adventurous seas – playing and learning as we go.

Before long, Early Intervention moves to ‘group based therapy’. With two other families and my MIL in tow to help with Hannah’s twin brother, we sing songs, we roll playdoh, we play with scarves, we read and sign story books. We play ‘tug o war’. We match colours and pictures and numbers. We sing some more and we laugh and we learn. Hannah works hard at all of these things. There is a frog in a box toy that we all just love. So much so that I buy one for us to play with at home. That and our storage box coffee tables provide hours of entertainment for the twins. “Guess who’s hiding down in the box until somebody opens the lid!”

In our small courtyard we paint and play with water for hours on end. Hannah is commando crawling everywhere – but still no walking. We borrow a weighted cart – to help her learn to walk independently. She is about 18 months old. She and her brother play in it for hours. Quickly with her mischievous grin it turns into a cart that she can sit in while her brother pushes her – or vice versa. Lots of plaster dents develop in the hallway walls of our little cottage. Lots and lots of lovely smiles and memories of Hannah’s learning to walk. By her second birthday she has taken her first couple of independent steps. For their birthday I have hunted down a play stove. They chop and cook and serve for hours on end developing all sorts of skills for life and play and learning.

The house proves too small pretty quickly. I am back at work and we move to a rented property – by now Hannah really wants to jump. We have tried everything – down small steps, over skipping ropes – there is more space here and so we return the weighted cart and borrow a small trampoline with a handle. She spends ages ‘jumping’ on it. To this day she is still unsteady in her jumping but both feet lift off the ground and her grin lights up the room. She has graduated to a large netted trampoline.
Hannah loves to watch dvds especially Dora and Wiggles and Astroboy. They become part of her play routines. Understandably with all the medical appointments ‘playing doctors’ becomes one of Hannah’s favourite activities. Astroboy gets tied up regularly while she checks his heart and gives him needles. For a while there she had a bad nappy rash and so did Astroboy. We embraced the computer as a playing and learning tool. I put a sticker on the ‘enter’ key and it wasn’t long before Hannah was painting online and playing phonics games too.
Hannah has a best friend who is 12. She comes and visits. The twins love to see her and her brother. Hannah grabs her hand and leads her out to the trampoline for some games. When her father is on duty all the chairs in the living room are lined up and dolls + Dad become passengers on Hannah’s bus.
 Baby Proms at the Opera House - Where is The Green Sheep?

 With her cousin - and the rest of the family too

Her fine motor skills are quite good really but she needs to keep working on strength in her hands. Lucky theraputty is a great place to hide marbles. Playdoh is fantastic for a child who likes to cook. Hannah plays hard and works hard. She delights in her games and learns as she goes. Together with her brother she spends hours building marvellous and ever more complex constructions with duplo. We have a huge tub of the stuff which they drag out to play with.

As twins there is a special relationship between my children. Developmentally they are in many respects miles apart but in their play they are on the same page. Whether it’s dress ups or painting or superhero games, they love it. They have their own special rhythm. Hannah likes ‘shopping’ and litters the house with bags full of stuff. She likes to buy ‘everything’ when she goes to town. Her brother plays at making powerpoint presentations ‘to help Hannah speak’. He can spend hours on the computer putting together a slide show of ‘d’ words for her and then sits with her while they ‘play it together’. His latest passion is snakes and ladders, Hannah prefers memory games, they take turns helping each other along the way. Her brother can be a bit more serious than Hannah. I love to watch him relax while he plays with her. Long ago it was her who threw the first pea across the table at him and made him laugh, today it is she who cheers him up with silly antics and delicious games.

This year she had to go back into hospital for an overnight stay to have her tonsils and adenoids removed. Each child got a box of Toy Story ‘little lego’ to play with as part of Hannah’s recuperation. Her father and her brother helped her manage the instruction booklet and the necessary fine motor skills. Hannah provided the smiles and the action play with the figures once they were done.

Play is not only children’s work it is good for grown ups too. Now that she is 5 and at ‘big school’ I look back on those early years not as a roundabout of therapies (which they were!) but as days and days of fun and games. Of joy and laughter and delight as I played with my children and watched them blossom. My early fears when I found out Hannah had Down syndrome are a blurry memory, a time of fear and sorrow has grown hazy with all the ‘normal’ moments that have happened since then and by all the play and games that have happened as my child and I learn and grow together. Play is the best therapy for my daughter and she is the best therapy for us.

Top 5 Books for New Parents...and oldies too.....

I enjoyed putting myself into the shoes of new parents to a baby with Down Syndrome yesterday. I didn't enjoy the fear and pain that I know they must be feeling.... but I passed on details of Shamptons and my facebook page - and then I had a step through time of each - just scanning through each wondering how they might appear to my new parents.

There were so many wonderful memories. Gorgeous kids and happy times. Even some video capturing the twins when they were much littler than now. I hope that they bring hope and reassuranceas well as a dose of reality to anyone who is just coming to terms with a diagnosis.

Then I started to think of the books I'd recommend.... Here's my Top 5:

Three Butterflies
Conny Wenk Schmetterlingszauder

I LOVE this one. My favourite is the three friends painting toenails...It's a simple tale of childhood. Beautiful.

In 2004 not long after the twins were born I discovered the world of blogging. One of my favourite blogs was Rebecca Phong's Always Chaos Around Here. I remember that her blog was a hub from which I could connect with many others who like me were not far along their parenting journeys with their children with DS. I remember when Kathryn Lynard Soper put out the call fro contributions to a book - a collection of our stories. I was tempted but not far enough along this journey or tech savvy enough to sign up for it. Gifts 1 Mothers Reflect on How Children with Down Syndrome Enrich Their Lives has stories by so many of those bloggy comrades. 

I remember my excitement when my copy arrived. This classic was followed by Gifts 2 also enjoyable and there is currently an Australian version Now I See out. I did offer a contribution to that one but didn't make the cut because they had plenty of entries - a lovely reminder that you are not alone on this journey. I'll try and find my draft contribution - it was about play - and make another post of it if I can.

Those 2 were easy picks.... the next three books for the journey....

Roadmap to Holland by Jennifer Graf Groneberg

Jen's blog was called Pinwheels. She is a talented writer and Roadmap was a lovely story to read. Today there is also Kathryn Lynard Soper's The Year My Son and I were Born, Kelle Hampton's Bloom, Dear Dr Fields (an Australian one) by Pat Daniels and Tuesday's Child by Kathy Evans just to name a few...

I have to Include Greater Expectations by Jan Gothard - it's great. Well researched easy to read and Australian to boot. The medical chapter is the best I have read so if you are getting the bejesus scared out of you with the medicalisation of a diagnosis of Down Syndrome - this chapter is worth checking out.

There are also some good everyday clinical ones such as Understanding Down Syndrome by Cliff Cunningham and Down Syndrome the Facts by Mark Selikowitz. I always have time for a book edited or linked to Siegfried M Peuschel (such as Adults with Down Syndrome) too.

And finally there are a growing number of books written with characters who have DS in them or are actually written by people with DS such as Count Us In written by Jason Kingsley and Mitchell Levitz (both of whom have DS), Nina Rose and the Dancing Prince by Sandra Wise....but because it has a special spot in my journey I have to choose Kim Edwards Memory Keepers Daughter from this group. I pick it for sentimental reasons - yes it has twins in it - one with DS the other 'typical'....the story line if you don't know revolves around the separation of these twins at birth....and the effect that decision (and the secrecy of it) has on all the characters. I especially love the way Edwards portrays and indeed repairs the relationship between the twins when they finally learn about each other and are reunited towards the end of the story. I also like that it is a book that stretches beyond the disability world of Down is much more about the characters, their relationships and the fateful things that shape them/us, the ripple effects and consequences that are the path their/our lives take....a good read, also made into a movie. Not such a far fetched story line either if you recall the high profile case of Baby Gammy.

And then if I was to stretch the list to 6 - there is Fasten Your Seatbelt and The View from Their Shoes - books written for siblings of kids with a disability....

A welcome post

If you are new to this journey, maybe you have a prenatal diagnosis, maybe a 'birth surprise' diagnosis...

10 years into this journey it's hard to know what is the most important information to share with you. I pondered this just yesterday - so many landmarks and milestones - some were really just parenting ones and others uniquely tied to a diagnosis of Down Syndrome. And all the while I know that everyone's journey is unique - your reactions and family - aren't mine. There is no formula. Just as we've learned from our friend's families - each with their own 'culture' and set of norms so too in this case - the environment you provide will help to shape your newborn baby.

There are many different books retelling the journey of parenting a child with Down Syndrome available these days - the reader in me loves them and yet it may be too soon for you. I know that they are what you are more likely to reach for before the therapy manuals such as Gross Motor for Children with Down Syndrome (a classic - and invaluable for those times when you worry that you are not doing enough or helping your baby in the best way). You may find yourself embracing the world of supplements and diets, i know many families who swear by this. It's daunting at the start, I don't think you'll be ready for any of that just yet. You are re-imagining your family, rewriting your identity, recalibrating reality....and so - just a few days into discovery - what is the best response I can give. What resource should I recommend?

It starts with congratulations. Ends with reassurance that you can do this. What about the middle - the heart of the matter? In some ways there are no words that are right. I can reassure you with the joys and normalcy of our lives and as a natural optimist that is easy to do. I see the rainbows and unicorns in parenting a child with special needs but I am also realistic enough to acknowledge that it is hard. Sometimes it's the hardest thing I've ever done. Mostly it's the easiest - loving Hannah, and her brother - the easiest and the best. I can confirm your darkest most irrational fears - cos no this baby doesn't have 3 heads (literally) but figuratively - this baby will change everything. Your fear, your terror are not misplaced but they are ill informed.
 In Venice 2011

In all those  accounts I've read by mothers like me, one of the most common statements is "I wish I knew then what I know now". But that is impossible.

All I can say is 'congratulations. You are going to be fine. Your baby will be fine and well loved. Don't worry, they will belong."

And if you are looking for something to read - try any one of Conny Wenk's books. My favourite is Three Butterflies but there is also one for fathers and another about friendship. They're written in German - and perhaps that's part of their beauty. I can't read them - I look at the myriad of images and I draw my own conclusions.... I can see the truth, the beauty that is part of my past, my present and my future.....

Yes start with that - the emotions - the love, the bond. Try not to worry about tomorrow. The future is unknown for all of us. We have to learn to deal with the reality - not the 'possibles'. Dream big for your child (that's easy). Trust yourself and others - that will come in time. You are having a child, just another child. A child like no other. A child that is yours. A child that will love you. A child that will make you. Your child.

We are there. We want to hold your hand, celebrate with you. Welcome you to the 'community'. When your child cracks his first smile, when she sits up on her own, when he eats solids, when she claps her hands, when he writes his name - these are awesome moments. Moments that are shared by everyone who has worked so hard at playing with your child to help them get there, but mostly, they are celebrations of your child - the child you watch persevere over and over - with a mix of total respect for their spirit while a little sadness seeps through cos it is so hard for them. Believe me, the joy - so outweighs the sadness. Let your child be your guide. Learn who they are. Let them show you who you can be. I think you'll like the results. I know I did.

Tuesday, April 28, 2015

Hearts and Schools

I LOVE this:

Please be patient with her mom.  Please remember I've trusted others to stop her beating heart and bring her back again and somehow this feels not so different even though the heart at risk is mine.  Please know I want to be your collaborative partner and your biggest fan and forgive any fumbles I make along the way.

from Pudge and Biggs - Open letter to kindergarten teacher - Blog post August 9 2014.

And it all comes back as I follow through on applications to High School....

Saturday, March 07, 2015

It's a Win!!!

Camp was awesome. Hmmm - let me repeat that - camp was awesome!!! YAYYYYYY!!! I am so relieved. After a rocky planning session I was very worried - cos although I thought she could get a lot out of it I also know it would really push her. Well, she thrived. The other kids and the staff all rallied around. Everyone had a good time - including Hannah. She was full of chatter and stories when she got home at 8pm tonight. It took us a while to get the twins calm and settled for bed even though they were both tired.

Her favourite part - bowling. Kit's favourite part was the War Memorial and Questacon. In just 3 short days they have both grown up just that little bit more. All staff were quick to tell me that Hannah did great. Even the busdriver commented upon just how great she had been. Her aid sent me a wonderful text with some pics. I have to quote from it: "she is a beautiful and amazing child with a super loving personality. I miss her already..."

While I was waiting with the other parents for the bus to arrive, one of the Mums who I have spoken too briefly fromtime to time but don't really know came up to say how wonderful it was that Hannah was going on the camp and told me a sweet anecdote about how on Wed morning when they were leaving that she'd stopped to say hello to Hannah - and how Hannah had wanted to know if she was going on the camp too....she went on to say how she'd have loved to go too but had to get to work instead!

Anyway, Hannah has some lovely photos and some even more wonderful memories. Here are a couple of the pics:
Dancing shadows with her friends

 With her gorgeous twin brother:
 My favourite:

 Spy Hannah

Wednesday, March 04, 2015


Well the time has come. First school camp. P and I are excited for the twins but were also feeling anxious. To be fair it's probably the combo of Ps brother having brain surgery today as well as concern about how Hannah is going to cope with the very busy excursion schedule. Needless to say we will keep our phones close and start each time they ring no doubt.

Hannah woke up with a smile ready at 5.30 today. She's ready to 'step up'. The teacher assistant going too is a favourite of Hannah's so I know she'll be well cared for - I just hope she has enough stamina to enjoy it. Kit on the other band should be ok but I do worry about him too. Lots of his mates left the school last year and he hasn't quite found his click with the remaining boys. He sat towards the front of the bus next to a girl I couldn't recognise. I take comfort from the fact that I know he is well liked and has excellent social skills. Still it's a bit of a learning curve/change for him so I hope he likes his room mates.

Now for me to take advantage of not having to do the school run - I've already signed up to work later Thurs and Fri - so must make sure I build in some time for lone walks and cappuccinos.

Tuesday, March 03, 2015

Beware the Leopard

"But Mr Dent, the plans have been available in the local planning office for the last nine months."

"Oh yes, well as soon as I heard I went straight round to see them, yesterday afternoon. You hadn't exactly gone out of your way to call attention to them, had you? I mean, like actually telling anybody or anything."

"But the plans were on display..."

"On display? I eventually had to go down to the cellar to find them."

"That's the display department."

"With a flashlight."

"Ah, well the lights had probably gone."

"So had the stairs."

"But look, you found the notice didn't you?"

"Yes," said Arthur, "yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with asign on the door saying 'Beware of the Leopard'."

Fom: The Hitchhikers Guide to the Galaxy.

Now that little skit has often crossed my mind over the years - especially when seeking enrolment at school or when trying to gauge a schools practices and attitudes towards special education. And I gotta tell you - it ain't pretty. I still recall the anger and anxiety caused because Kit's enrolment acceptance came through with everyone else's but Hannah's was delayed. I've heard tell of the dreaded 'second interview' - if it comes before acceptance and is held because of disability.... well... it's a fine line but it roars discrimination to me.

At open days for high school (I know I'vve been to a number), the queue before the Gifted and Talented staff stretches proudly for metres. Occassionally someone will slink by the special ed staff, hoping not to be noticed. Most laughable is when some poor sod left their spectacles at home - you see them peering at the signage like a foreign language - and when one of the staff explains - the look of horror quickly masked with a pitying smile as they smugly shake their heads and glide away as quickly and easily as they can from the train wreck. A few like me walk right on up - and ask straight up what we wish to know, but mostly nope. It's a slow day for special education.

Now why is that? Consider the enrolment scenarios I've seen - where you wonder if your child with special education needs will be accepted. I never wonder that about Kit. Yes we have laws - the Disability Discrimination Act has been around almost as long as I've been teaching - and I've accumulated 2 lots of long service leave! But here and now - over 20 years since that Act was passed parents fear that their child having learning difficulties will compromise their choice of educational setting.

Then we wonder why we get students into Year 7 that we may not have the full background on... and this is perpetuated in many messages- sublte and not so sublte. "We are a MAINSTREAM school" said with a low calm voice and a slightly exaggerated smile - a factual truth with a hidden warning cos let's face it - your kid AINT 'mainstream'. It truly gets my hackles up because I've heard it so often now - I try and avoid using it anymore - I mean what the hell does it actually mean anyway? Schools have a huge variety of kids, kids with special needs are just part of the mix in any typical school setting - therefore I would argue that the mainstream school is a setting for diverse learners... for all learners.

I happened to come into possession of a school prospectus this week - you know the glossy marketing mag used by private schools (and I don't mean exclusive private ones in this instance).... Information to help you choose a school for your child. What has been chosen as 'important and persuasive information?' you ask. I don't think the answer will surpise any special needs parent that has dared to dream an inclusive dream for their child....lots of talk of values... you know respect, diligence yada yada the beauty (aka power) of tradition with some latin thrown in, a vision of caring and compassion - inclusion of the whole person through academic rigour, yada yada...some talk of multicultural community and then - yep You guessed it - bullet points about awesome Gifted and Talented Programs, debating, mock trials, yada yada.... and finally nestled under the heading of Pastoral Care mention of special education - as extending experiences of Gifted and Talented as well as 'supporting students with specific learning difficulties'. Counselling if you're having 'personal difficulties'. That is it. 'supporting students with specific learning difficulties'. No more information ANYWHERE in this prospectus. No wonder I see it as a piece of marketing. This prospectus is the 'Beware of the Leopard' sign that any special needs parent gets pretty familiar with unfortunately. It tells me NOTHING about how they might support students with additonal learning needs in that school and all the sweet and lovely generalisations of values means NADA without strong and clear processes and strategies to actually WORK for INCLUSION.

The final straw is on the last page - in large font is a quote from Martin Luther King Jr:
"Intelligence plus character - that is the goal of true education"

I see little intelligence in the vision of this prospectus - no great humanity of Christian values as I understand them being ALIVE in this school. Nothing to attract me to it. Just more 'shame' being perpetuated and so the next open day I go to - when I see those parents glancing sideways towards the special education staff, nervously wondering if they should approach. I'm not going to judge them. I get it. If it's at the school that I work at I hope I can go up to them and greet them with a big welcoming smile. Reassure them that it will be ok. That we are there as an important, integral part of the school to support their child's RIGHT to access quality educaiton on the same basis as their 'typical' peers. It's the law and it's right.

Sorry, rant over now.... for now....

Saturday, February 28, 2015


One of the first lessons I learned on this journey of a 'special needs parent' was that I was not alone. It was an invaluable lesson. The other came from my children - both of them, but especially Miss Hannah - life's too short to hold back because you're scared/embarrassed/shy. 

So yesterday I watched anxiously while a virtual real life mum of 4 with stage 4 liver cancer risked her all for the chance to live cancer free with her 4 beautiful daughters (the youngest of whom has DS - hence our initial connection) and her fella. It didn't work. They found new tumours in the scant section she was hoping she'd be able to survive with.

Today she's dusting herself off. Putting on her red lippy and preparing for a too finite future.

Three days ago I went to the funeral of a guy I went to school with. By the by he was born with significant physical disabilities - and you know about three weeks ago when P and I were marvelling at this modern inclusion gig and trying to recall the scant exposure to disability that wed had in our schooling - this guy, an old and good friend, who Ps been friends with since he was 10 - this guy didn't even get a guernsey. And we both wondered why he hadn't commented on the last few fb posts [P is playing his eclectic and quite extensive vinyl collection from Z - A].... And when he didn't arrive at work the previous Friday - his work mates were concerned - and so he had passed away - and we were reminded that yes indeed he had significant disabilities and that these were no doubt behind his early death at 46.

The night before the funeral, Ps brother - the one with stage 4 brain cancer - had a seizure. He's still in hospital now and we are all very concerned for him. We want to be there for him, to support his gorgeous fiancé - the scans aren't good - the old tumour continues to grow and new ones emerge... There is a wedding planned for 3 weeks time - well all be interstate then but now - it's not good. A conference with his drs on Monday might tell us more but in the meantime P is poised ready to fly to Melbourne in an instant. It seems such a cliche 'cancer sux' when I see it on someone's fb wall, or 'kick cancers butt' - what good is such vitriol when you are facing death?

The funeral was beautiful - Chris lived full of passion, lots of passions - but the one I relate to most was music. I loved reading his comments on Ps vinyl fb posts - even Billy Joel! His enthusiasm for creative beauty. His funeral was packed to the rafters with people from various stages of his life. It began with some Rolling Stones, had plenty of divine gospel hymns in the middle and concluded with the Warumpis  - an awesome aboriginal band. Sublime.
We caught up with school friends we hadn't seen in 30 years and others were lucky enough to still see regularly. 

Through the wonders of our small world and via fb Chris realised that he and I had two mutual friends who wed met through very different circumstances - we were all there to mark his passing, to celebrate his life and make our inadequate offerings of support to his family.

The spirit of these three very different individuals is what triumphs in the end. For they are full of passion, love, compassion and life. Oh yes life in the face of death. Cancer doesn't steal that, death can't defeat it. I don't know what happens when we die but I imagine it being a bigger, more intense version of the firey abyss P and I went through with the twins birth, Hannah's diagnosis, her heart surgery and post operative complications and Kit having meningitis - the darkest time of my life when my hope was depleted and my faith gone. Even in the face of all this and more these people stand tall. Their spirits guide those they love. I don't believe they ever stop.

Wednesday, February 11, 2015

Tomorrow isToday

So it isn't a week since last week's meltdown but I am pleased to report that we are getting back on track. It's early days but the yellow brick road is gleaming postdownpour and I can see rainbows far off in the distance.

Lots of work later and I have a Guide written - Out and About With Hannah. The school has agreed to send an extra pair of hands along on camp - a fabulous TA who has a daughter that will be on camp too - and who is doing further study re Down Syndrome. So really I could say that this is a bonus activity for her!! Lol. Well I could say that if I wasn't a teacher myself - so I know that taking a group of kids away whilst very rewarding is in fact also a big imposition.

A couple of run ins regarding ipads - not quite sorted but on the way.... so progress is being made.

Hannah is still enamoured of the idea of being a 'big girl' so is trying to concentrate at school although I am told and totally believe that she gets pretty tired by about lunchtime.

Today I had to pick her up at lunchtime togo for a blood test - at the lab she took up the request form herself - and handed over her medicare card when requested. The Lab were great and quickly realised that as much as possible I wanted Hannah to be in the 'driver's seat' so asked herto checkher details on the form and blood sample - she didok on that  - I am sure she'll be doing it on her own like a pro before too long. So that impressed me - her confidence is growing. Then we went back to school to collect her brother and she was keen to go and independently show her friends her bandaid from the test - and then her teachers too.

Also this morning I got a call from her roll call teacher - it mightbe too late but there is a special needs event in swimming trials coming up - would I be interested in Hannah participating. My word I would!! Hannah loves swimming. So we talked about that and then I thought I could check with her oldswimming instructor - whether she could do 50 metres on her own - did she need kickboard etc. Now being the small world that it is, her swimming instructor happens to also teach her in her disability dance class and also happens to have a daughter in the same class at Hannah's school. So I got a text back not only answering my questions but offering to be the person to assist Hannah cos she'll be there watching her daughter anyway. Ahhh... sometimes I really love this life. I know that I am blessed - I know it every time I look at my twins (even when I am yelling at them :p) but I am reminded of just HOW blessed I am on days like today - and also on days likelast week's disaster cos even though it feels so incredibly hard and isolating in the intensity P and I stick together. We are a team. And then when the worst of the storm has passed I know that there are otherswaiting to help us through.

Here's some pics of Hannah swimming at the school carnival last year - she really wanted to go in the big pool.... and the daughter of that TA - well she swam alongside Hannah.... and I was told by a number of people who were there just how movingit was and how the whole stand cheered my monster child on.

Thursday, February 05, 2015

Our army

This is the only army I'm interested in belonging to: special needs army

It's a great read - and a clear sign given I shared it on fb - thenight before the day I just had....


7.45 pm Unpicking the hem of a school uniform

7.15 eating dinner

6.45 cooking dinner

6.15 arrive home, clearing up the stuff left out on the bench so there was room to prepare dinner and putting away the groceries

6.00pm being called 'supermum' by a random marketer trying to get me to make regular donations to an animal charity

5.30 shopping for groceries - it's 10% discount in you buy today

5.00 dropping Hannah at her dance lesson - and going shopping for groceries

4.30 afternoon tea with Hannah

4.00 ringing venues to see if they've ever had a student with a disability cross their doorstep in a mainstream class booking

3.30 arrive home, more panadol, check emails and start ringing venues to find out about disability access

3.00 driving to pick up the kids, holding back tears, texting a friend to pick up kids and meet me out the front of the school cos I'm worried I can't hold back my tears

2.30 read email from school that makes me feel slightly more positive about school camp. Cry as I read it to my colleague.

2.00 working

1.30 working

1.00 working

12.30 lunch at my desk - working

12 - working

11.30 working

11 - sneaking to the lunchroom to get a cuppa wthout being seen, massive headache still there

10.30 take panadol, read fabulous email to principal of kids school composed by DH trying to capture our reaction to morning meeting

10. still crying, ringing a 'brains trust' to see if they have ideas

9.30 crying

9.00 crying, debriefing from a horrendous meeting at school with a colleague

8.30 sobbing as I drove to work

8.00 blindsided in a meeting - denying all the 'can't dos' being thrown at us about Hannah

7.45 explaining why neither P or I want to go on camp to 'take care of Hannah' aka - not your responsibility - and we didn't even get into the leave without pay that we'd need to take or the blow to her blooming confidence that it would bring....

7.30 driving to school meeting

7.00 getting kids fed and teeth cleaned and Hannah's creams on etc

6.45 encouraging Hannah and Kit to get out of bed and get dressed for school

6.30 double checking packed lunches for the day

6.15 getting out of bed, getting dressed and checking work emails

6.00am awake

I feel like I've been hit by a bus. I wonder what the closest approximation is for parents of 'typical' children. Every time it happens it blindsides us. Last year it was the paed who doesn't normally bulk bill us - he not only bulk billed but sent us down for xrays and further blood tests. Our crisis antennae went to full alert. Lucky all resolved and xrays were fine.
Today it was school camp. Perhaps I should just quote a little from the email we sent as follow up...

"I am not sure that the meeting we had this morning went particularly well. (We) ..... walked away from it somewhat stunned.

Throughout the years... I have always been impressed with your commitment to inclusion when it comes to Hannah. More specifically I have always believed your attitude and those of Hannah’s teachers has been that Hannah was part of the school community no different to any other student, regardless of her individual needs.  I also know that Hannah has thrived in the last few years because of this.

Sadly I felt this morning we were back to a position that I have not felt since the early days of Hannah’s education. One in which her disability is a burden and an inconvenience.

I had expected we would be using the time to constructively plan how to make the .... camp an enjoyable learning experience and what options were available to enable this. Instead I believe that a conclusion had already been reached before we began, that being, Hannah would not cope with the situation at all. To me it felt like the starting point of the discussion was what Hannah cannot do rather than what she is capable of. I believe this is called the deficit model by academics.

As always .....(we) are committed to working with you and Hannah’s teachers and are more than happy to contribute in a concrete and meaningful way. Having said that it is our job as parents to ensure that Hannah grows to be a confident,  independent and self-reliant person. This and the sense of Hannah  being singled out is our primary reason for being resistant to the idea of one of us being present throughout the three days.

I am absolutely confident that Hannah will really benefit from the camp ..."

Now we received a response which we are more than happy to work with and build on - so I am NOT complaining about this specific school - but today was BIG. It was hard. and I need to process and debrief - otherwise - I have learnt nothing and pass on no experience of value.

If I was to rewind my day it would have started with a very different meeting. Instead of asking seemingly random questions as to whether she could dress herself or wash her hair it might have begun with some positive statments about how she is adapting to middle school (yrs 5&6). Now there are issues of transition but overall she is keen to do well and if she hasn't go her act together yet - neither have the teachers - they are still finetuning what the year will look like - so surely they could find a couple of positive things to say???? Then the discussion needed to have 3 clear areas of focus:
1. self care - so are there any areas where you think Hannah might need some extra assistance; eg mealtimes, sleeping arrangements, getting dressed etc
2. how can we manage such a busy schedule and still allow Hannah to enjoy the range of places we are going to?
3. what level of additional supervision do you think needs to be in place to make this happen? Can you volunteer to help with any of this?

but that isn't what we got - and i know how easy it is in hindsight, but man today sucked. BIG TIME. 

All our flight/fight mechanisms were activated - this is our precious daughter, our gift to this community - and we will stand up for her EVERYTIME. At the same time I know we got defensive. We wondered if we were letting Hannah down, were we a 'fail' as parents? Should we have done more? Should we be going on the camp with her? Should we even be sending her? What do special schools do? Would she be better off in one? UGGGHHHHH and that self doubt means that when you ask me if Hannah can shower herself I sharply reply "yes" as if you are a bit of an idiot for wondering... but in reality I know that yes Hannah CAN shower herself (for example) but she does need someone to be aware and adapt the environment to ensure that she is able to get the water temperature right first.

Lucky we get new days. Tomorrow is our new day. I have a lot of work to do. I'm going to be ringing around various venues asking about disbaility access, creating a visual travel diary for my daughter and creating a "How to Manage..... Out and About with Hannah" list for the wonderful staff member that has now been added to the camp to help ensure that it is all Hannah expects it to be (she's very excited about being a big girl and going to camp) and maybe, just maybe a smidgeon of what P and I dare to dream of for her in this inclusion journey...

Cos EVERYONE is entitled to a chance.

Wednesday, January 21, 2015

Family holidays

As the holidays draw to a close and the new school year looms large I am feeling a bit sad - all this free time and I still haven't ..... And ..... Oh my how will I ever cope with the return to the rhythm of our daily grind ... And .... #thelearningjourneygetssteeper!

So as I draw in a deep deep breath I'm going to start by reflecting on the holiday that was before tackling the year that is.

We've had our eclectic sparkles and lace on and lots of it's been fabulous.

A week at our favourite beach for example.
I'm here!
This boy just loves his time in the sun - no lack of things to do - and not a device in sight.

There's games for all.

Some flora and fauna from the yard
And a family bush walk in the arboretum 
More time at the beach
Hannah and I did a yoga class, Kit walked the hound.
And back to the beach.
And a spot of fishing.
An ice cream or two.
And fish and chips too.
There's a great set of swings near the seafood shop.
It was fun. A house that slept lots so Ps siblings came and stayed. Nan and Pop drove up for lunch one day. A family we're friends with through the kids school came up in the second part of the week and then another family joined us too so between Ps family at the start of the week and those friends at the end it was a relaxing but busy time. We managed the in renovated kitchen sans dishwasher magnificently and enjoyed the variety of company.

It did make me think though - it would be years since P has lived with his siblings - all under one roof (although technically his brother and fiancé were out in the converted garage/cottage). I can't imagine ever surviving even a few nights like that with my sisters. But then it's all about circumstances isn't it? My family all live a thousand kms away. P is one of 4 children - 2 of whom have cancer and 2 live in Sydney too. So circumstances aligned with a sizable holiday house - it was an opportune time for the siblings to holiday together. Ps brother was first diagnosed with stage 4 brain cancer after collapsing midway thru last year. Two surgeries and some ongoing chemo and although it's clearly a grim road in the end everyone is quietly enjoying this stage where he is able to get out and about most of the time and we get to appreciate our time with him. One of Ps sisters has breast cancer - it's an ongoing journey for her but man she's doing great! We are all a bit in awe of this mad mum of 4 who is determinedly living her life - and returning to the paid workforce as her youngest heads off to school. So yeah - it's not about our families being that different but like so many happy happenstances that occur in this life (like twins or extra chromomes), circumstances, opportunity and luck gave us some memories to treasure forever. Best of all are the memories the kids now have :-)