Wednesday, 17 April 2013

2012 asd log: entry 1

April is Autism Awareness Month. To me personally it seems a bit cruel to start off such a month on "April Fool's Day", it feels almost as if life and the world are making a mockery of my life. "Here's your beautiful baby girl", "born 4weeks early but perfectly healthy and in no way considered premature", "nothing's wrong with her at all, well done mom" that's what they said to me the day Ginny was born. Doctors, nurses, midwifes, the lot, "well done mom, you did a great job" but did I really?

They say not to blame yourself for your child's disbility but how the hell are you meant to do that as a mother? After all everything she is is the way my body put her together. The connections in her brain that don't click were grown by me. That beautiful face and incredibly physically able body were what I created just the way I grew her brain. A brain that keeps her prisoner. How can that not be my fault?

Here's a beautiful baby girl, she's perfectly normal, well done mom. If her body had been crippled I would have known from the start. If she had downs someone would have told me just as they would of if there were some other detectable defect. They would've warned me. Instead I took home my little treasure, genuinely proud of myself. I doted on her and dreamt up all the things we would do together and for a very long time they seemed as if they would all come true.

18months later my child regressed... well done mom, oh wait April fool!! you did this to her, her frustration and suffering, yea that was all you. and guess what we couldn't find a single thing wrong with her then but she may never ever live an independant life. All those dreams we thought we'd let you accumulate were so we could smash them after a long and tedious diagnosis process.

2 1/2 yrs passed before we'd write it up and hand over our diagnosis. Your child is on the Autistic Spectrum and guess what, she's a 57/60 classifing her as severely Autistic. We won't give her speech therapy because her loss of speech was obviously caused by her autism but in a year or two you can send her to a special school. She will never go to mainstream. Now here's a bloody month where people will wear puzzle pieces and blue to raise awareness for your kid and the load of others affected by her conditon but unless those people are directly affected by someone with the condition they will never know what it's like. Hell, you won't ever know what it's like to stuck inside your daughter's head, you just know what it's like to have to care for her. Aren't you selfish?

That's what it feels like starting out on the 1st of April. Like being laughed at or a kick in the face and I can only pray that people will take our situation seriously. I can only pray that by reading my entries people may stop and think twice when they see a kid that doesnt respond stood in an alley way and maybe wait nearby and make sure they dont run into oncoming traffic before a parent shows up because maybe that child is on the spectrum and an escape artist. Maybe that child is like my Ginny and for every person who just left her on her own while I was running around looking for her bawling my eyes out, screaming her name, knowing she wouldnt respond to it maybe there will be that one voice I hear in the distance screaming back "she's okay, we've found her".

That one person that may have saved her life before our home became a prison. Before locks on every window, locking and relocking both our front and back door by key after every use, bolted in bookcases and display cabinets so she can't bring them down on herself, specially made locks for every individual door in our house and minimizing her room to pretty much just a bed to keep her from pulling out alll of the clothes and toys from the drawers and flipping furniture through the night despite being medicated for sleep... all of those manmade safety precautions that would become part of our day to day minute to minute lives that still can not compare to the place my little girl is locked away, stuck in a fog she struggles to see through every second of her life.

No posterboards, tee shirts or cutesy slogans will take away her condition, they wont make her daily or mine any easier to manage but one person becoming aware and tolerant of individuals affected by her condition might. You might. You could make a difference by opening your eyes and teaching your own children one day to be tolerant of others affected by ASD. You could make being the parent of a child with Autism easier to manage but not rolling your eyes or making snide remarks when one of our children are having a meltdown because of over or under stimulation from the world around them and I hope you will.

April 1st 2012:
Normally Ginny would be up at 7am the latest having breakfast and watching tv on a Sunday morning but she woke up two nights ago in the night and threw up all over herself, cried a minute and went back to sleep. In the middle of the night, after my husband and I had gone to bed she woke up again and continued to be sick all over herself but as we were upstairs we heard her and went into her room, changed all her bedding, washed the walls and bedframe and bathed her. A neurotypical 5yr old would not have just gone back to sleep in her own sick, she would have come out of her room and got you but Ginny is not nuerotypical. So on this Sunday Ginny is still in bed with a tummybug, she hasn't eaten in two days and barely drunk but my washing machine has been nonstop and today she doesn't want to get out of bed.

I brought her up some dry cereal and diluted juice and she drunk and ate it. What a relief. She didnt ask for anything as she doesnt speak but I went through the motions of trail and error as you must when a nonverbal child cries. This time her nappy didnt just need changing she was hungry and thirsty too. It was nearly one in the afternoon before Ginny decided she wanted to get out of bed. She hadnt thrown up all day but her bottom had taken over with going in overload. I'd never imagined I'd have to change diapers for Ginny this long but now I know she may never be potty trained like her little sister. Training her sister was hard enough because she couldn't understand why she was expected to use the toilet while her big sister continued to be changed, thankfully she got over it and was fully trained before the age of three.

Ginny is definitely on the mend. She's moving around and eating but still unwell. She played in the garden a short while before coming into the conservatory for a cuddle and more meds to bring her fever down. Besides my washing still going non stop, the various outfit changes and knowing I've probably used more nappies in the day then I normally would have in a week today has been a quite and calm day. Lots of mess, meaning more clean up for me but that's expected with poorly children. Granted, we probably stock more washing powder, and cleaning supplies than a normal family and we have a stack of boxes my height delivered by our supplier every couple of months of diapers but I don't really think about those things anymore.

Nope Sunday has all in all been noneventful on the autism front but that's from a person who has got used to the diaper changes, feeding a five year old all her meals, washing/ dressing her and guessing what she's feeling, wants and needs. Ginny went to bed like a little angel on the 1st of April but was up crying most of the night with some kind of ache she couldnt tell us about.

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