Wednesday, 17 April 2013

My Little Ginny Bean

Virginia was always a bit different, I could tell that no matter how many people told me I was crazy. She always seemed to have a world of her own away from ours.

Her development seemed normal enough to most people. She crawled, walked, laughed, blew kisses, had words, sung, danced, slept well, and did many things that other babies didn't; things that seemed so clever but now that I have a second child and now that I have been around more infants I can see were far from normal for a child of her age.

At 18 months old Ginny contracted MRSA, within 24 hrs of noticing what seemed like a mosquito bite had become a huge abscess on her lower back with irritation on most of her back. We went to the emergency room and after an 8 hr wait we were told it was MRSA, the abscess was drained and we were written a prescription for an antibiotic that would kill off the bacteria which we had filled as soon as possible. Ginny started screaming and throwing herself around in tantrums, she also developed a rash so soon after we were back in the hospital and switched onto a stronger antibiotic which they hoped she would react better to.

She had two more abscesses which were drained and Ginny followed the course of her new medication which had to be followed by yogurt because of how strong they were. She couldn't eat and lost loads of weight. She became very sad. She stopped singing, stopped dancing, stopped talking. She became very frustrated and withdrawn. She would cry because she just couldn't get the words out after trying and trying again so she just stopped trying. She started tiptoe walking and hand flapping. She started chewing everything.

We didn't have insurance. Her father lived in another state and for this that and the other reason I couldn't get her medicaid reinstated even though I was a full-time student/ single mom. It was hard. I watched my Ginny disappearing and everyday I tried and tried to bring her back. Some days were better than others. Some days were fantastic and others unbearable. I was losing myself, it was so hard to try to be a mom or anyone for that matter. There was no help out there, it seemed. I'd met James, we were engaged and we just had to deal with every day one at a time.

Ginny was happy again. She became accustom with her circumstances. She was okay with the way she was.

Everyone told me it couldn't be autism.

In the states it seemed like there was help whatsoever. We moved. We had to pay loads having to have Ginny seen as a private patient but at least there was a way through. It took months and months. We were constantly being passed from one professional to the next. There were so many assessments to be made before a final diagnosis could be reached.

We were given a pending diagnosis of Autistic Spectrum Disorder by our specialist paediatrician first. She had follow ups every three months which didn't really help.

Virginia was/is an escape artist. She'd figure out doors and remember how to get to her favourite places, parks, the green, stores, etc. We have to have locks on all of our windows and gates on all our doors. Ginny has no fear or sense of self preservation. When we go out without another adult Ginny has to stay in her pushchair. Ginny would happily jump out of a window, dance in traffic, walk on her own for miles, eat rocks, lay down in a parking lot, turn off candles with her hands, etc.

Ginny doesn't have friends. Her disability doesn't allow her to make friends. Ginny can not play with toys properly. She can't play games. She can't draw. She will stand in front of the tv when people are trying to watch it. She might hit or bite us when she gets too excited. She doesn't understand.

Ginny can't speak. Words don't make sense to her. She babels. She flaps her hands. She chews and eats random things. She has problems sleeping. She is constantly thirsty. she gets sick more often than other children. She has problems sleeping. She has problems with her bowels. We don't know when she will be able to be potty-trained. Ginny won't be going to a mainstream school.

Ginny can't make decisions. She can't decide between toys, snacks, drinks or activities so we have to make her decisions for her. She can not dress herself. She can not wash herself. She can't even wash her hands. She can not feed herself meals.

We need to dress her. We need to change her. We need to wash her. We need to feed her. We need to watch her at all times.

Virginia is my first daughter. I love her more than words can express. Life with her can be more difficult than that of a "normal" child. She can drive me crazy. She tires me out.

Ginny's smile can light up a room. She's beautiful. She's a cheeky monkey. She makes me laugh. She makes me happy.

The Autistic Team came in to make another assessment, they needed to score Ginny on the Childhood Autism Rating Scale (CARS). They needed to add up points after asking questions so they could show us how severely autistic Virginia is. They didn't need their point system to know how autistic Ginny was, they needed it to make it known to other. Ginny is dealt with by 8 different professionals and has yet to start at a school for the severely learning disabled but will be doing so in the near future.

Total CARS scores range from a fifteen to 60, with a minimum score of thirty serving as the cutoff for a diagnosis of autism on the mild end of the autistic spectrum. Virginia scored a 57. Virginia is severely autistic. Virginia is special. Virginia is the reason I can deal with her diagnosis. Everyday her smile makes me waking up in the morning possible. I wouldn't trade her for anything else in the world but I do hope that with time she finds her autism less debilitating.

Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain. Nobody knows what causes it. Virginia has always been autistic. Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction. Ginny will always be autistic but i hope that with all the work we all put into helping her she will find everyday a bit easier and know how much she is loved. 

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