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.

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