Wednesday, 17 April 2013

Our lives with autism 2013

It's been 4yrs since Virginia was diagnosed with classic autism. 5yrs since I watched the child I believed I had fade away. Coming to terms with fact that I didn't have the child I thought I had was excruciating. I mourned for the child I'd awaited throughout my pregnancy as I watched Ginny dragged further and further within herself. If I'd not had been expecting Melody I could have easily lost myself inside of a bottle but I didn't have that option so I trudged on weighed down by depression on top of dealing with expatriating to the UK. Ginny's diagnosis liberated me of my guilt, it felt justified somehow because no matter how many people tell you it's not your fault as a mother you created this being, essentially wiring them differently from within. Life became easier.

Acceptance of her condition settled in a long time ago now but sometimes I still dream of her doing the same things other children do. In my dreams she talks to us and takes her sister by the hand to play with their dolls together in their room. She helps me set the table at dinner time and complains about not liking strawberries at lunch. I take her to gymnastics and watch her be told off for chatting to friends instead of paying attention. She whizzes away on her scooter on the walk to the same school James went to as a child and comes home with a list as long as my arm of clubs she wants to join. She tells me she wants daddy when i tell her off for being naughty and stamps her feet with a sour look on her face. She wants to help to teach Melody to write her name and sings songs to Isa when shes crying. She tells me how much she loves me... Isa wakes me with a scream. It's 3am in the Pavitt household and Ginny isn't like her sisters anymore. She may be awake in her bedroom turning her bedroom upside down despite her sleep meds or she may have managed to strip off her back zipped pyjamas and catsuit and thrown off her nappy. In the morning she'll need me to get her dressed, feed her her breakfast, brush her teeth and hair, put her shoes on and watch her until her escort arrives to get her to her specialist school for the severely learning disabled a couple of towns over on her taxi.

Ginny is now 6 1/2 years old but still requires all the attention of an infant, an infant who's new favourite indoor game is swinging off of the banister onto the sofa. I used to often wonder how people managed with twins until I had a child of my own and that child fell into the category of being severely autistic. Now I have a growing child who still needs me to preform all of her care needs alongside any other child I've had. A growing child that must be fed, carried and changed, often at the same time as her new sibling who will quickly progress past her abilities and have to step into the role of an older sibling and help look after her.

Her sisters will inevitably become young carers no matter how hard James and I work to take on all of the workload. Our efforts in affect cause them to lose a degree of our time, attention and energy. They are growing up knowing that Ginny requires a different amount of caring and are expected to be helpful, calm and accepting of their sister's condition though it is too much to ask. They have to learn to hide prized possessions so that they are not damaged and to accept a share of blame when Ginny damages their things because they left them accessible. They have extra tears to shed and frustrations to surface because without any say in matter the have been born into a life with added responsibilities and expectations beyond their years.

This is not the life I wanted for my children but all I can do is devote any time I can manage to them individually so that they do not feel forgotten or less important than Ginny. My girls are so different from each other that it takes a degree of skill to plan activities and rewards that cater to their individual likes and dislikes best. I often feel as if I am slipping out of a loop with my friends because spending time around me and my children is more tedious then spending time around families that aren't touched by autism. Who could blame them? They are lucky enough to not have to live in the shadows that so many families of autistic find themselves retreating to but I have always made it a point to live our life out in the open. My friends are angels that do make the extra effort to make sure my girls are constantly included and welcomed so I know that these feelings are mostly paranoia.

The world is becoming more Autism aware and this is because people are sharing their stories and demanding this invisible life long condition be taken seriously. I expose Ginny to trips, holidays and outings that would mortify other parents with children on the spectrum because as difficult as it may be this is the world Ginny was born into and the world she needs to learn to cope In. It can be crowded, loud, quiet, hot, cold, wet, empty, bright, dull delicate, and/or textured at any given time. I believe raising Ginny outside of the shadows has been incredibly beneficial for her, when she became fixated on certain types of cups or foods I changed them around and made her have to manage outside of her comfort zone but I now have a little girl who will eat almost anything anywhere. I have a little girl who can travel by car, tube, train, boat, plane or on foot. I have a little girl who enjoys new experiences and has come to realise holidays are fabulous treats. Living outside of the shadows has helped ensure Ginny's sisters can live the most 'normal' lives possible. They are also very lucky that their Ginny bean is a happy, loving affectionate child who never lashes out at them or makes them feel threatened. I don't know if I would have coped otherwise and I've many times said that I believe Ginny is the reason I can cope with her condition. The actual little girl beneath the Autism that grabs daddy by the face and gives him the best kisses in the world creeps into my bed in the evenings hoping I will let her snuggle up and fall asleep with me.

I don't know if its maturation or schooling but in the last year we have seen Ginny became so much more calm and patient. She listens so much better and really makes an effort to be understood in her own way. In the last five months we've moved from absolutely no toileting capability to a little girls who struggles her way over to you with a severe expression so you can sit her on the toilet for a poo and now rarely has a bowel movement in her nappy. She's shown increased acknowledgment of her sisters and an interest in our latest addition to the family. She can now swim the width of the pool unassisted and no longer requires armbands. Her improvements may not even be noticeable to others but for our family they're something special.

Along with improvements where would we be without a new list of peculiar compulsions. In the last year Ginny has developed an obsession with gathering random objects that she must carry around with her all at the same time. She will walk from room to room with said objects tightly clutched in her little fingers. She has also become a bit of a magpie again,foraging the things she steals in her bedroom for examination at a later date. She is very calm and quiet as she makes her way around people and things so you will rarely realise she's taken something until you need it or find it. Walking on the exterior of the staircase is also a revisited trend but as we know have open stairs she also works he way between steps and spaces in the banister with ease. While at times these developments seem endearing they can also be unnerving.

We still yearn to have Ginny speak to us or communicate with us through some other communication system but we manage. I have given up on trying to manage everything on my own and now have a cleaner and a carer to provide an extra pair of hands for a few hours a week. It can get expensive but it's worth my sanity. James and I also try to go out more often. It is incredibly easy to get sucked into the role of carer and forget who you are so we try to see our friends together or individually as often as possible. Over all 2013 seems to be a year of our lives finally coming together. I feel happy and more importantly the girls are happy, they want for nothing and James now has three daddy's girls to spoil rotten.

1 comment:

  1. A wonderful journey. Exemplarily beautiful. Thank you for sharing. Love, grandad Josef & Yvonne