Friday, November 11, 2016

Sadness

Parenting a child with special needs can be so lonely. Even when acceptance is high the difference that excludes arises to catch us off guard. Blindsides us with grief. 

We've been here before and won't be defeated. After a crappy week in the Dock we've set our dial to HOME. Outsiders not welcome as we gather in a tight embrace warding off fear, cowardice  and exclusion under any explanation.

Every carer knows they should look after themselves in order to keep up the good fight. And so this simple wreath has left its cleansing soothing scent on my fingers and come tomorrow I'll be back - cos lonely as things get - this parenting gig is mine and I d rather change the world than change my daughter .

Saturday, March 12, 2016

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

Bowling

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.

Gifts 
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 Syndrome...it 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....