First and foremost I would like to thank everyone who took a minute to read last year's autism awareness note "My Little Ginny Bean". It may have seemed to most as nothing but showing your support by sparing a few minutes of your day instead of playing fb games or chatting to friends to see what life is like for Ginny and my family was a step towards raising awareness about autism so Thank you all.
Because of all the people who showed their support, I have decided to make my notes for autism awareness day annual entries and fill everyone in on the progress or lack of progress in the year since the last post. Hopefully This note will get as many reads as the last and make Autism a little more real for those of you who are not directly affected by the condition...
Some days I look at Ginny and I don't know what to think or feel. Right now she is pacing back and forth in our living room , stomping her feet as she stares at her rigidly moving fingers whilst flapping both arms and making random noises. She moves her face awkwardly and strains as if this act of stimming is taking a lot of effort. Her flaps become more intense and she spreads her fingers as far as she physically can and stops periodically to take a look at the television. Sometimes I find it cute, somtimes it annoys me but on days like today when I really have a think about Ginny and her condition it just makes me want to cry.
When you're expecting a child, especially your first you build up so many hopes and dreams for that littlle expected treasure. I can tell you right now no one thinks up or hopes Autism, the idea of it probably doesnt even cross most pepople's minds at all. When they're born, your heart fills up with so much love for them and all those hopes and dreams seem so much more attainable...I had so many plans. I'd mapped out the first few year's of Ginny's life to the T from what age she'd be started on what sports to, birthday party plans and what movies we'd watch together.
I said no one hopes for Autism but I definitely think mums know. I don't know how, they just do. I was sitting playing with Ginny on my mom's bed, watching how she never glanced at the television dispite my mom putting on a children's channel and continued to fiddle w a box in hand whilst completely ignoring the new toy I'd removed from it. That second I thought, "holy shit, my Ginny Bean is Autistic!". I couldn't say it aloud at that point and immediately shrugged it off as soon as she smiled at me and grabbed my face. I know having taken a few psych courses made it easier for me to pick up but Im sure others would have felt something was just wrong.
Months passed. Still no interest in the telly. Still not playing with toys appropriately. Still that gut feeling requiring constant brushing off. There was speech now, dancing now, singing now, play, and so much interaction. It just couldn't be autism, I was being daft and ignorant. At least that's what I felt like at the time. Whenever I asked anyone if they thought something was wrong with Ginny they told me I was crazy, they told me she was awesome! She was awesome! And they were right, it must've all been in my head, mustn't it?
You tell yourself something enough and you'll start to believe it. I did. Nothing was wrong. She was doing so much other kids her age couldn't she must've been gifted like me. And she was just so beautiful. then Dora Happened. Ginny's first obsession and TV interest, Dora the Explorer. Ginny loved her! She liked a character and it made her seem so much more "normal"...Everyone loved Ginny. It was impossible not to. She was the cuddliest, cutest, sweetest little mischeif in all the world. No one could compare... Then it happened. Everything stopped. The singing, the dancing, the playing, the copying, the words, it all went. Not all at once but it did all go.
No one could say there was nothing wrong anymore. Some insisted but I knew they were wrong now. They were wrong and I was right. I always had been and them denying that there was something couldn't stop me from having known all along. Of course it couldn't be autism. Everyone was so sure that how couldnt I be sure too?...Ginny did not have autism.
Many months later, at 2 1/2yrs old Ginny was given a diagnosis of Autistic Spectrum Disorder. By age three she was placed as a 57/60 on the Childhood Autism Rating Scale classifiying her as severely autistic...I spent YEARS depressed, my pregnancy was so difficult. Getting up every morning was so difficult. Cleaning, cooking, dressing, everything, it all just felt so impossible. That diagnosis helped though. I wasn't crazy. I was right. Ginny was going to finally get some help.
Unfortunatly there is not much that can be done. There was/is no quick fix. At least Ginny was going to get into a special school with all of the support she needs. That definately helped...the diagnosis woke me up from the haze I'd felt I'd drifted in forever and her school placement let me breathe again. It gave me that energy and spark I'd lost but it didn't give me my Ginny back.
I've tried dietary therapy removing gluten from her already dairyfree diet and it helped her feel. Ginny is hyposensitive so when she virtually has a limitless threshold for pain. Not a good thing when mixed with no sense of self preservation or fear. When we removed gluten she stopped bumping into things as much and her belly got a bit better.
Next we removed Soya and Maize, now her belly was much better. Her red blotches were gone and her belly was no longer bloated up like a malnourshied child. Sticking to her diet was/is hard. She is forever scavenging for foods she shouldn't have. The way her pediatrition puts it they are second class allergies. They don't show in the bloods but the affects speak from themselves.
We've tried other forms of biomedical therapy as well. Supplemental showed a bit of promise. SGinny has various supplements she takes on a daily basis throughout the day. Since starting on these supplements we've noticed loads. She listens more. Her eyecontact is better. She sleeps better, bedtime is not as much of a battle. Lots of little things. No one in the world outside of Autism would even notice but for us they were so Significant! They gave me a bit of hope but at times I feel like it may be a false sense of hope.
I saw a comedian last night on tv saying that every parent worries when there child doesnt speak or walk by the time they expect it but that it will eventually happen cause you don't see people who don't speak or walk in the real world. His real world must be far far from mine. Ginny never speaking or being able to take care of herself is always a plausable future in my world.
Ginny will be 5 in August. She should be in dance classes, soccer, music, gymnastics. Everything I'd dreamed up. She should be making up stories, helping me cook, picking out what she wants to wear, feeding herself, chatting away at me until I feel like my ears are going to bleed. Dreaming about what she wants to be when she grows up. Doing all the things little girls in Michael Macentire's real world.
That's not our real world.
Ginny still needs to be fed. Ginny still needs to be changed. Ginny still needs to be dressed. Ginny still needs to be washed. Ginny still needs to be watched at all times. Ginny may always need these things done for her. That is my real world. A world where all the hopes and dreams I had for her have changed drastically so much so that they are beyond recognition. Most people hoe their kids will get good grades, behave themselves, have lots of friends, get a degree and be successful adults. I just want Ginny to speak to me. I want her to be able to use a toilet. To feed herself her dinner, pick out what she wants to wear. To know eating rocks is not a good idea and that jumping in a river that's mostly frozen is a bad idea.
I want there to be a future for her outside of her head. Her school asures me that she's doing great. That she shows progress. Some days I am so happy to hear that, other days it's hard to believe...you might not see Ginny turning to her name being called, sitting down when instructed to, giving me her feet for her shoes and putting her arms through her top and coat for me as anything to celebrate but for my family these are major acheivements. They are progress. they are hope.
Safety is still our number one concern. Ginny is now able to climb over safety gates, banisters, onto counter tops and the stove. Ginny can in under two minutes, turn on all the burners to my stove, the ove, washing machine, open my fridge and freezer and turn the taps on in the sink. Getting bigger is making her so much more difficult to manage. Pretty soon we will need locks on all our doors secured by codes. When we have our own house it will be completely modified for her saftey. Everyday is a short step from a heart attack and I'm not even 25.
One of the hardest parts of everyday for me is watching how much Melody just wants to play, hug and love her big sister. She thinks Ginny is the coolest person on the planet and wants nothing more to cuddle her and give her kisses. Ginny on the other hand just wants to be left alone. She runs away from her and pushes her away. She cries because she doesnt understand why Ginny cuddles mummy and daddy but not her. In the evenings I try to force some cuddle time so that she doesn't feel too unloved but I have to make sure I don't stress Ginny out too badly in the process.
Another thing is watching my two year old surpass Ginny's developmental abilities drastically. It's so hard to be happy for Melody and her acheivements when all I can feel is the injustice that Ginny can't progress with her ease. I love both of my little girls equally but it's so hard to know that Melody being nerotypical allows her to become so much closer to me then my first born. Melody is my star but Ginny is my angel. She's taught me so much about life and myself. She's made me a better person. She's opened my eyes to her world, my world, our world, the real world. And all without saying a word.