Wednesday, 17 April 2013

2012 asd log: entry 2


April 2nd, 2012

Ginny is definitely feeling much better and though I'm glad to see better I know it means I'm in for a tiring day. She decided 10am would be a good time to peel herself out of bed and came down in a grump and pulled her sippie cup of the drainer and pulled at the cupboard under the stairs to tell me she wanted cereal. Though Ginny can not speak and has not yet become comfortable with picture exchange despit two years of her school pushing it she can get her point across about certain things she wants pretty well.

Ginny only feels the need for us if she can not get something herself so locks on cupboards with foods she like mean I avoid finding her sat on the floor with a box of cereal emptied on her lap like I had before the locks. Ginny still requires a sippie cup because she tends to launch her cup when she's had enough, be it after completing her cup or just taking a swig. When you pour her drink in the mornings she will pass you her cup's lid or try to place it over the cup herself as she is quite anxious to have her drink as soon as possible in the mornings. Though her ways may seem incredibly primitive and annoying to a neurotypical individual these are very clear and encouraged forms of communication and not anticipating her needs and having what she wants ready for her encourages her to make the effort to communicate her needs.

As you can imagine an unlided beaker would be another huge mess but we do try to encourage it when we can sit with her. Ginny has also become much better with putting her cup down in the last few months, she used to feel the need to throw it full force behind her wherever she was without thinking of whether it could hurt someone or break. Through lots of hard work at school and encouragement at home she has really really improved with this. She can many times successfully drink unassisted from a normal cup without making a mess as long as an adult is nearby paying full attention to her. We give her a straw if we know that our attention can not be full on to lessen the chances of a big accident.

Ginny is an oppertunist and will use any unattended second to get something she wants that she shouldn't have and her amazing memory means that may be somthing I put away a couple of weeks or a month ago that she's been given a split second to get to being left in the same room where it was hidden prior. Now that Ginny was feeling better I knew that I could expect to find her up to something she shouldnt be doing as she wasn't going to spending an abundance of time curled up under a cover on the sofa.

I put finding Nemo on after breakfast to try and get sometime to empty the dishwasher and put the dishes from breakfast in before getting a load of laundry into the washing machine and getting last night's washing off the airer. Though doing all these things should only take about 15-20minutes, I have to keep popping into the living room to check on Ginny every few minutes and I move the airer there so I can take the washing down and be in the same room as her. However in the minute it takes me to walk the clothes upstairs and put the clothes off the airer into the airing cupboard, Ginny has gotten the pack of glue sticks she say me store the month before after her sister's birthday party and eaten half a stick!

To say the least this is incredibly frustrating. Firstly she's eaten half a stick of glue! Secondly she's rumaged through a drawer and pulled anything out that was in her way to get what she wants so colouring paper, pencils and loads of other things are now scattered all over the place, and lastly I put something that I know she tends to want somewhere accessable so that was a fail on my end big time. Glue sticks should be locked in the office with erasers, markers, playdough and other supplies Ginny feels the need to ingest dispite the fact that they are not food products.

I tell Ginny off in hopes that one day the concept of "Ginny gluesticks are not for eating or going in your mouth at all" will sink in and to show Melody that she is not the only one reprimanded in the household. Afterwards I wash what glue I can off her and tidy up the mess she made. Then I can take her upstairs to get her dressed. I may need to dress Ginny still but she does help, putting her arms and legs through clothing and handing me her feet for socks and shoes.

As Im still unsure of whether Ginny is 100% or not our best bet is to stay in. Ginny doesn't play with conventional toys very often so she sticks to her chewie (a toy made for children with special needs who feel the need to chew/mouth objects for sensory stimulation),a string of christmas decorating beads, a sock, a water bottle half frozen with water, and a light up ladybird that make music for the day. They only keep her attention for minutes at a time but she goes back to them when she wants them and allow me to vaccum the downstairs so we can play a game of roll around and tickle. Melody is very good with joining in but not always so good with respecting her sister's space.

I have to be careful to not overexcite Ginny when we play, I forgot about that today and Ginny nipped at me. Luckily I reacted quickly and she got mostly a mouthful of my sleeve and didnt break my skin. There have been many times when I haven't been so lucky and ended up with a Ginny bean hanging off my arm by her teeth. Ginny isn't a violent child but if she is very upset or overexcited she may take a bite at you.

After lunch the day had warmed up a bit and we played in the garden for a while. Ginny has to be watched at all times in the garden. She was still 4 when she first got over our 6ft fence and escaped into the neighbours garden. Before the age of three she developed a taste for lavander, rocks and dirt so we have to make sure she doesn't fill up on these things. The lavander I dont mind so much but the dirt and rocks I do. In the last year Ginny has also developed an affinity for brick. Because of her incessant need to mouth and chew objects Ginny's teeth have been filed down tiny. We're trying our best to get her out of the habbit of shoving brick and rock into her mouth at an oppertunity because besdies the fact that she shouldn't be eating these things we do not want her to damage her next set of teeth when they come around.

When we came in for some telly so I could make dinner and Ginny had a massive meltdown. She threw herself on the floor screaming and started pinching at me, incredibly upset about something she couldn't tell me, then out of the corner of her eye she spotted her sippie cup, got up off the floor and tried to drink from it although it was empty. She then launched it and shreiked frustrated more than ever. I picked up her cup and filled it as she whimpered behind me and tried to use the full cup to lure her back into the living room but she didnt want to budge she was stairing at a cabinet so I knew a snack must be in there that she was after. After multiple screams and stomps because it seemed mommy was not as clairvoyant as she'd hoped I finally placed my hand on a packet of digestive biscuits and she calmed down.

I set Ginny up with some digestives and a drink and she sat happily watching Cars2 with her sister while I started dinner. It took about 30-40mins to get dinner started and set it up in the oven for another 40mins so I had to check on her a few times before I'd finished. On the first check she was ripping up artwork her sister had made at school, on the next she had broken one of her sister's happyland playset horses by chewing off his face. One of the things that get to me the most about Ginny's autism is the way is seems she just has to damage her sister's things. It can be overwheming at times when I know it was something Melody was very proud of craftwise or a favorite toy. It's just not fair to Melody that Ginny's destructive nature results in her posessions being destroyed. I try to replace the things I can but of course this isn't always possible.

After I popped Dinner in the oven I vaccumed again as Ginny always makes quite a bit of a mess with whatever snack she's given. I got Melody's workbook out and we worked on that a bit and did some colouring. I can't leave Melody with her art supplies unattended when Ginny is home or they will be trashed. There is no possibly, Ginny will find a way and trash them. Granddad got home and forgot to lock the office back up as he often does so Ginny climbed up onto his desk, stood on her tippie toes and got her sister's playdough off the topshelf over the desk and ran into the conservatory to try to eat it in a corner.

Luckily it was a container she had already crushed broken in the past so the playdough was put into a plastic bag before being put back into the container to prevent it drying out so it took a few extra seconds to break into and I think we got to her before she managed to get much out. As a rule in our house, if things seem too calm, still or quiet, run and check on Ginny cause she is most likely up to no good. I put the playdough back and locked the office back up and checked Ginnys mouth for any playdough. Then I set the table while Melody played with Nanny in the conservatory and Ginny stropped a bit about me spoiling her fun.

When James got home, we sat at the the table and had dinner as usual. Ginny ate very well and had a popsicle from a batch Melody and I had made from fresh fruit juice earlier on as dessert and then we went up for her bedtime bath. Ginny's evening routine is made up of dinner at the table, a bath with her sister, her sleep meds which have to be administered before she is put into bed, hair and teeth brushing, jimjams, bedtime story, songs and bed. Except for the medication Melody's routine is pretty much the same as we put them to bed for the same time and they share a bedroom. Both girls went to bed great and we didn't hear a peep out of Ginny throughout the night.

If James is home from work on time and not too tired or busy, bedtime is usually his job and my hour to unwind. Last night we did it together because he had some work to get done so I read whilst the girls had a play in the tub before they were ready to come out. It wasn't a bad day but it's just the start of the half term and sooner than later Ginny will be fed up of school being off so the real fun will begin. James and I watched a movie before bed.We met when Ginny was a year old so we have never had any time to be a child-free couple. I would have loved to have had some time to just be a couple with James instead of a parent but that's not the way things went.

We do try to take a few days away from the kids for our own sanity as it has been recommended to us by the professionals who deal with Ginny. As Ginny and I are American and James is not biologically or adoptively Ginny's "father" we are not yet entiteled to statutory assitance from the government and do not receive respite services or benifits to help us contribute the extra expenses we have for Ginny. I'm just glad Ginny is allowed placement at a special school but bureaucratic bs we have to deal with is ridiculous. We are constantly told about all the help we should have provided for our family because of need but that we are not allowed access to because of our status.

If James were a member of another EU memberstate we would not have all of these hoops to jump through but as he's British and we've live in Britain we must. It doesn't matter that we have lived together for over 4years and have a child together with another on the way, we still have to spend loads of time and money making the UKBA happy proving that we are a legitimate couple. Just another stress we don't need but hey who cares. At the end of April the 2nd, Autism Awareness Day, even though I am bone tired I am happy to have my little family and greatful for all of my friends who have shown us their support.

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