Our glorious summer has just come to its end and already Christmas is making an appearance in shops all over the country. There is no doubt that the holidays will soon be upon us but what does that mean? Expenses? Temperature drops?Holiday cheer? Good will to all men? We all remember the magic that surrounded Christmas for us as children and now that we have had the joy of having children of our own we want to ensure the magic is not lost for them; but with the temperature drops come colds, with presents come expense and in the end the cheer only reaches us when we have successfully given our children the Christmas of their dreams.In the stressful march until that day one thing parents can at least look forward to is a better night’s sleep for their little ones as days grow shorter and the sun no longer creeps around the curtains causing confusion. In the Pavitt household the setting sun brings no relief. If our unwanted lodger decides it, not even our daughter’s sleep medication can guarantee our 7yr old will sleep a wink, never mind an entire night.
Our Ginny is one of the estimated 695,000 people in the United Kingdom affected by her hidden lifelong condition. Many under the umbrella of the spectrum will share her sleep issues but not all. What they will all share is difficulty with social communication, difficulty with social interaction, and difficulty with social imagination. Some will live independent lives while others may require a lifetime of specialist support,and for the most part they look just like everyone else around.However, the longer you watch them the more you notice that their normalcy is an optical illusion. It is a cruel trick of nature that makes you work double time to figure out why these beautiful creatures don’t seem to fit in the way you’d expect them to. Their camouflage disguises the different processing system within that makes life in our world an incredibly difficult one for them. These 695,000 all have a lodger of their own, each different from the others but all an elephant of varied proportions with the name of Autism.
Ginny loves Christmas but along with the excitement comes the stress of a set of social rules for how a child “should” behave themselves traditionally during the holidays. My Ginny is a 57/60 on the childhood autism rating scale. She was diagnosed with Classic Autism with severe learning difficulties at 2 1/2yrs and stopped speaking at 18months. She is now 7yrs old and continues to be nonverbal and severely autistic despite the many people who have always stopped to tell me “but she is so beautiful, you wait and see, she will grow out of it”. My frustration with these people used to be immeasurable but with time I’ve come to see how difficult it is to digest the idea of this seemingly “perfect” child having such a “flaw”. After all a 7year old trying to grab all of the presents and sweets at Santa’s grotto is just down to bad parenting, isn’t it? What if it’s not that simple? What if no matter how many times that child is reprimanded the child simply cannot help trying to do so again? What if someone else is pulling the strings and as much as the child would like to keep from committing the act, their puppeteer’s strength istoo much to bare?
Until recently I purely believed it was completely up to lack of understanding, but after reading ‘The Reason I Jump’, a translated book written by Naoki Higashida, a severely autistic young man, who describes his inner turmoil in depth Ihave begun to wonder more and more how much any of us really do know about autism. I would give anything to know what is going on behind Virginia’s beautiful eyes. To know just how much she comprehends and why she does the things that she does. What wakes her in the night and what her favourite colour really is. If I could just have her without our elephant’s interference for a day, I would make not of all I could to make sure that when he again took over I was at least doing all that I could for her. I think the hardest part of caring for a child as severely affected by autism is the uncertainty. Nothing can compare to not knowing whether you are doing all you can for your child. Nothing can make you feel more of a failure.
Hearing me speak of Ginny and her condition you would probably assume she is an only child but she is actually the oldest of my three girls even if it is believed she has the least understanding. Melody and Evaluisa are both, as far as anyone can tell so far, neurotypical children. Though I try my hardest to give them each their personal spotlight I often fear they also live in the shadow of our lodger. At only 4years old Melody has a tremendous amount of responsibility. If I step out of a room she must make sure Ginny does not do anythingto hurt herself or anyone else. She also has to live knowing that if she doesn’t securely put away her prized possessions it is quite likely that her sister will destroy them, and tounderstand that her sister does not do these things out of malice. My magnificent Melody is the star of the household and her love for her sister knows no bounds. She is always there to remind me that if she would like a treat, her sister most likely would like the same. She sings Ginny songs when she is upset and prays every night that god look after her sister and help her learn to play properly and speak. She is also a brilliant big sister to her year old Isa and tries to set a good example for her.
During the holiday season I could get lost in a haze and easily stop from setting up things that Ginny could get her hands on and destroy but magnificent Melody saves the day and brings the magic of Christmas with her. Having a child like Ginny, presents are far from conventional. We stuff stockings with tubes of crazy soap and shaving foam and fill gift bags with metres of fabric from the market. We ask for gift experiences like theme park tickets and horse riding lessons and camping trips instead of toys and puzzles. Then again, with two neurotypical children in the mix we cannot forget the importance of “normal” Christmas gifts and activities for them so we attend lights up, pantomimes and Christmas parties that with time Ginny has come to enjoy and seemingly look forwards to. Physical presents, on the other hand, will always be at risk and no matter how well Melody copes with her sister’s condition I watch her heart break a little more every time something is destroyed. During normal times we can easily replace casualties but at Christmas the factor of old Saint Nick to consider. Gifts from Mr. Claus himself are precious.
Now we have to think out of the box by thinking of one. The best gift Ginny has ever gifted Melody was a pink tuck box. It stores all of Melody’s most special things and keeps them safe from our elephant. This Christmas Ginny may need to gift Melody a new one as books and puzzles have recently become a target and it has become harder and harder to hide them to keep them safe. We have been very lucky that though our Ginny is a climber she has not yet taken to scaling Christmas trees. She much rather sit back and watch its beautiful lights while trying to sniff out where mummy has hidden the candy canes over the smell of pine. Besides the frustration Ginny feels over time off school during the holidays Christmastime is probably one of the most manageable times for us because Virginia enjoys it so much. There are many children on the spectrum who find even the uncertainty of not knowing what is behind their wrapped parcels too stressful to cope with but Ginny relishes in the excitement of the different and in her own way sprinkles her own Christmas magic by showing us she is aware of the holiday and how much she does love it by pulling Christmas books out of shelves at church, in book shops, and at home as we approach the season.
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Thank you for sharing, Caney. You are obviously a good loving mother, and I am sorry that you ever feel guilty that you aren't doing enough. We are all limited by time and energy and resources. There is so much attention and research on autism now, that just hope and pray that a "cure" is found before too much more time goes by..... Happy Holidays. Your blog, I am sure, is both a comfort for those on a similar path, and educational for all of us. Blessings to you.
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