Sunday, 12 May 2013
Wednesday, 17 April 2013
Our lives with autism 2013
It's been 4yrs since Virginia was diagnosed with classic autism. 5yrs since I watched the child I believed I had fade away. Coming to terms with fact that I didn't have the child I thought I had was excruciating. I mourned for the child I'd awaited throughout my pregnancy as I watched Ginny dragged further and further within herself. If I'd not had been expecting Melody I could have easily lost myself inside of a bottle but I didn't have that option so I trudged on weighed down by depression on top of dealing with expatriating to the UK. Ginny's diagnosis liberated me of my guilt, it felt justified somehow because no matter how many people tell you it's not your fault as a mother you created this being, essentially wiring them differently from within. Life became easier.
Acceptance of her condition settled in a long time ago now but sometimes I still dream of her doing the same things other children do. In my dreams she talks to us and takes her sister by the hand to play with their dolls together in their room. She helps me set the table at dinner time and complains about not liking strawberries at lunch. I take her to gymnastics and watch her be told off for chatting to friends instead of paying attention. She whizzes away on her scooter on the walk to the same school James went to as a child and comes home with a list as long as my arm of clubs she wants to join. She tells me she wants daddy when i tell her off for being naughty and stamps her feet with a sour look on her face. She wants to help to teach Melody to write her name and sings songs to Isa when shes crying. She tells me how much she loves me... Isa wakes me with a scream. It's 3am in the Pavitt household and Ginny isn't like her sisters anymore. She may be awake in her bedroom turning her bedroom upside down despite her sleep meds or she may have managed to strip off her back zipped pyjamas and catsuit and thrown off her nappy. In the morning she'll need me to get her dressed, feed her her breakfast, brush her teeth and hair, put her shoes on and watch her until her escort arrives to get her to her specialist school for the severely learning disabled a couple of towns over on her taxi.
Ginny is now 6 1/2 years old but still requires all the attention of an infant, an infant who's new favourite indoor game is swinging off of the banister onto the sofa. I used to often wonder how people managed with twins until I had a child of my own and that child fell into the category of being severely autistic. Now I have a growing child who still needs me to preform all of her care needs alongside any other child I've had. A growing child that must be fed, carried and changed, often at the same time as her new sibling who will quickly progress past her abilities and have to step into the role of an older sibling and help look after her.
Her sisters will inevitably become young carers no matter how hard I work to take on all of the workload. The efforts in affect cause them to lose a degree of my time, attention and energy. They are growing up knowing that Ginny requires a different amount of caring and are expected to be helpful, calm and accepting of their sister's condition though it is too much to ask. They have to learn to hide prized possessions so that they are not damaged and to accept a share of blame when Ginny damages their things because they left them accessible. They have extra tears to shed and frustrations to surface because without any say in matter the have been born into a life with added responsibilities and expectations beyond their years. James has started to make it clear that he no longer thinks his parents idea of Ginny finding a placement outside of the home is that big of a deal, but she is stil my baby.
This is not the life I wanted for my children but all I can do is devote any time I can manage to them individually so that they do not feel forgotten or less important than Ginny. My girls are so different from each other that it takes a degree of skill to plan activities and rewards that cater to their individual likes and dislikes best. I often feel as if I am slipping out of a loop with my friends because spending time around me and my children is more tedious then spending time around families that aren't touched by autism. Who could blame them? They are lucky enough to not have to live in the shadows that so many families of autistic find themselves retreating to but I have always made it a point to live our life out in the open. My friends are angels that do make the extra effort to make sure my girls are constantly included and welcomed so I know that these feelings are mostly paranoia.
The world is becoming more Autism aware and this is because people are sharing their stories and demanding this invisible life long condition be taken seriously. I expose Ginny to trips, holidays and outings that would mortify other parents with children on the spectrum because as difficult as it may be this is the world Ginny was born into and the world she needs to learn to cope In. It can be crowded, loud, quiet, hot, cold, wet, empty, bright, dull delicate, and/or textured at any given time. I believe raising Ginny outside of the shadows has been incredibly beneficial for her, when she became fixated on certain types of cups or foods I changed them around and made her have to manage outside of her comfort zone but I now have a little girl who will eat almost anything anywhere. I have a little girl who can travel by car, tube, train, boat, plane or on foot. I have a little girl who enjoys new experiences and has come to realise holidays are fabulous treats. Living outside of the shadows has helped ensure Ginny's sisters can live the most 'normal' lives possible. They are also very lucky that their Ginny bean is a happy, loving affectionate child who never lashes out at them or makes them feel threatened. I don't know if I would have coped otherwise and I've many times said that I believe Ginny is the reason I can cope with her condition. The actual little girl beneath the Autism that grabs daddy by the face and gives him the best kisses in the world creeps into my bed in the evenings hoping I will let her snuggle up and fall asleep with me.
I don't know if its maturation or schooling but in the last year we have seen Ginny became so much more calm and patient. She listens so much better and really makes an effort to be understood in her own way. In the last five months we've moved from absolutely no toileting capability to a little girls who struggles her way over to you with a severe expression so you can sit her on the toilet for a poo and now rarely has a bowel movement in her nappy. She's shown increased acknowledgment of her sisters and an interest in our latest addition to the family. She can now swim the width of the pool unassisted and no longer requires armbands. Her improvements may not even be noticeable to others but for our family they're something special.
Along with improvements where would we be without a new list of peculiar compulsions. In the last year Ginny has developed an obsession with gathering random objects that she must carry around with her all at the same time. She will walk from room to room with said objects tightly clutched in her little fingers. She has also become a bit of a magpie again,foraging the things she steals in her bedroom for examination at a later date. She is very calm and quiet as she makes her way around people and things so you will rarely realise she's taken something until you need it or find it. Walking on the exterior of the staircase is also a revisited trend but as we know have open stairs she also works he way between steps and spaces in the banister with ease. While at times these developments seem endearing they can also be unnerving.
We still yearn to have Ginny speak to us or communicate with us through some other communication system but we manage. I have given up on trying to manage everything on my own and now have a cleaner and a carer to provide an extra pair of hands for a few hours a week. It can get expensive but it's worth my sanity. James and I also try to go out more often. It is incredibly easy to get sucked into the role of carer and forget who you are so we try to see our friends together or individually as often as possible. Over all 2013 seems to be a year of our lives finally coming together. I feel happy and more importantly the girls are happy, they want for nothing and James now has three daddy's girls to spoil rotten.
Acceptance of her condition settled in a long time ago now but sometimes I still dream of her doing the same things other children do. In my dreams she talks to us and takes her sister by the hand to play with their dolls together in their room. She helps me set the table at dinner time and complains about not liking strawberries at lunch. I take her to gymnastics and watch her be told off for chatting to friends instead of paying attention. She whizzes away on her scooter on the walk to the same school James went to as a child and comes home with a list as long as my arm of clubs she wants to join. She tells me she wants daddy when i tell her off for being naughty and stamps her feet with a sour look on her face. She wants to help to teach Melody to write her name and sings songs to Isa when shes crying. She tells me how much she loves me... Isa wakes me with a scream. It's 3am in the Pavitt household and Ginny isn't like her sisters anymore. She may be awake in her bedroom turning her bedroom upside down despite her sleep meds or she may have managed to strip off her back zipped pyjamas and catsuit and thrown off her nappy. In the morning she'll need me to get her dressed, feed her her breakfast, brush her teeth and hair, put her shoes on and watch her until her escort arrives to get her to her specialist school for the severely learning disabled a couple of towns over on her taxi.
Ginny is now 6 1/2 years old but still requires all the attention of an infant, an infant who's new favourite indoor game is swinging off of the banister onto the sofa. I used to often wonder how people managed with twins until I had a child of my own and that child fell into the category of being severely autistic. Now I have a growing child who still needs me to preform all of her care needs alongside any other child I've had. A growing child that must be fed, carried and changed, often at the same time as her new sibling who will quickly progress past her abilities and have to step into the role of an older sibling and help look after her.
Her sisters will inevitably become young carers no matter how hard I work to take on all of the workload. The efforts in affect cause them to lose a degree of my time, attention and energy. They are growing up knowing that Ginny requires a different amount of caring and are expected to be helpful, calm and accepting of their sister's condition though it is too much to ask. They have to learn to hide prized possessions so that they are not damaged and to accept a share of blame when Ginny damages their things because they left them accessible. They have extra tears to shed and frustrations to surface because without any say in matter the have been born into a life with added responsibilities and expectations beyond their years. James has started to make it clear that he no longer thinks his parents idea of Ginny finding a placement outside of the home is that big of a deal, but she is stil my baby.
This is not the life I wanted for my children but all I can do is devote any time I can manage to them individually so that they do not feel forgotten or less important than Ginny. My girls are so different from each other that it takes a degree of skill to plan activities and rewards that cater to their individual likes and dislikes best. I often feel as if I am slipping out of a loop with my friends because spending time around me and my children is more tedious then spending time around families that aren't touched by autism. Who could blame them? They are lucky enough to not have to live in the shadows that so many families of autistic find themselves retreating to but I have always made it a point to live our life out in the open. My friends are angels that do make the extra effort to make sure my girls are constantly included and welcomed so I know that these feelings are mostly paranoia.
The world is becoming more Autism aware and this is because people are sharing their stories and demanding this invisible life long condition be taken seriously. I expose Ginny to trips, holidays and outings that would mortify other parents with children on the spectrum because as difficult as it may be this is the world Ginny was born into and the world she needs to learn to cope In. It can be crowded, loud, quiet, hot, cold, wet, empty, bright, dull delicate, and/or textured at any given time. I believe raising Ginny outside of the shadows has been incredibly beneficial for her, when she became fixated on certain types of cups or foods I changed them around and made her have to manage outside of her comfort zone but I now have a little girl who will eat almost anything anywhere. I have a little girl who can travel by car, tube, train, boat, plane or on foot. I have a little girl who enjoys new experiences and has come to realise holidays are fabulous treats. Living outside of the shadows has helped ensure Ginny's sisters can live the most 'normal' lives possible. They are also very lucky that their Ginny bean is a happy, loving affectionate child who never lashes out at them or makes them feel threatened. I don't know if I would have coped otherwise and I've many times said that I believe Ginny is the reason I can cope with her condition. The actual little girl beneath the Autism that grabs daddy by the face and gives him the best kisses in the world creeps into my bed in the evenings hoping I will let her snuggle up and fall asleep with me.
I don't know if its maturation or schooling but in the last year we have seen Ginny became so much more calm and patient. She listens so much better and really makes an effort to be understood in her own way. In the last five months we've moved from absolutely no toileting capability to a little girls who struggles her way over to you with a severe expression so you can sit her on the toilet for a poo and now rarely has a bowel movement in her nappy. She's shown increased acknowledgment of her sisters and an interest in our latest addition to the family. She can now swim the width of the pool unassisted and no longer requires armbands. Her improvements may not even be noticeable to others but for our family they're something special.
Along with improvements where would we be without a new list of peculiar compulsions. In the last year Ginny has developed an obsession with gathering random objects that she must carry around with her all at the same time. She will walk from room to room with said objects tightly clutched in her little fingers. She has also become a bit of a magpie again,foraging the things she steals in her bedroom for examination at a later date. She is very calm and quiet as she makes her way around people and things so you will rarely realise she's taken something until you need it or find it. Walking on the exterior of the staircase is also a revisited trend but as we know have open stairs she also works he way between steps and spaces in the banister with ease. While at times these developments seem endearing they can also be unnerving.
We still yearn to have Ginny speak to us or communicate with us through some other communication system but we manage. I have given up on trying to manage everything on my own and now have a cleaner and a carer to provide an extra pair of hands for a few hours a week. It can get expensive but it's worth my sanity. James and I also try to go out more often. It is incredibly easy to get sucked into the role of carer and forget who you are so we try to see our friends together or individually as often as possible. Over all 2013 seems to be a year of our lives finally coming together. I feel happy and more importantly the girls are happy, they want for nothing and James now has three daddy's girls to spoil rotten.
Helplessness
There's not much worse than watching your child cry, distraught, in pain, begging you to make things better. As a parent there is nothing you wouldn't do to help but when you don't know what's wrong where can you start.
It's the reason parents feel so helpless holding their crying newborn, going through the motions trying to figure out what could possibly be wrong. With time you learn to tell what type of cry means what. You learn to read your baby and it becomes easier until there's the piercing scream of a child who does not even know themselves what is wrong and nothing you can do helps. You pull your hair out, rock them in your arms pacing the room back and forth and many times you'll find yourself crying out of frustration.
Before you know it your child can sign, point or use their words to help you realise what it is wrong. I'll never forget the first time I was comforting melody after she woke in and she said "juice mummy". I cried. She was 19 months and 2days old making Ginny 4yrs and a few weeks old (being 2yrs, 6mons, 2wks and and 1 day older). I was still struggling through sleepless nights with Ginny and as proud as I was of Melody all I could think of was how many of those night Ginny may have wanted to just tell me she was thirsty and couldn't do so.
Ginny was 18months when she regressed and lost her words. Today she is 5years 8months 2weeks and 3days old and I've just spent the better part of two hours trying to comfort her and figure out why she was crying. She's still red faced and sweaty from the bout. Her sister is only 3years 2months and two days old today but she has spent the last couple of hours making me incredibly proud. I handed her her peppa pig doll and said it was time for doctor peppa and nurse melody to help make Ginny feel better cause was poorly. We gave her medicine, juice, sang her songs and laid with her until she settled. I congratulated nurse melody and doctor peppa on curing their patient and we celebrated with custard creams. Then the screams started up again. Melody wanted to cuddle Ginny and give her kisses to make her feel better but when Ginny is this worked up its too dangerous for Melody to try because she may accidentally hurt her. I put Melody in the other bunk and she started singing songs to help. I wanted to cuddle Ginny too but being pregnant its dangerous for me as well. I leaned over the bed with my tummy kept safe by the bedframe and mattress and tried my best to comfort her. In the end I popped Ed Sheeran on and by the 4th track she had calmed.
Maybe she was tired of my and her sisters voices, maybe the calpol had kicked in, I won't ever know. I'm not sure if the helplessness I felt now was worse than when she was a newborn but I think it was. I think you come to accept that it's natural with a newborn but knowing that your reception age child is still suffering because they can not tell you what is wrong tears you apart in an incredibly cruel way because you know they should be able to.
Today has been one of those days where I hate Ginny's autism more than anything else in the world. I know it's a part of her wiring but I damn it because of the way it makes her suffer. There's not much worse in the world than watching your child cry, as a parent there is nothing you wouldn't do to stop their suffering. Today I would have given anything to take away Ginny's autism and make her nuerotypical. Most days I only hope for her to learn to communicate or become higher functioning but today I wanted it gone.
It's the reason parents feel so helpless holding their crying newborn, going through the motions trying to figure out what could possibly be wrong. With time you learn to tell what type of cry means what. You learn to read your baby and it becomes easier until there's the piercing scream of a child who does not even know themselves what is wrong and nothing you can do helps. You pull your hair out, rock them in your arms pacing the room back and forth and many times you'll find yourself crying out of frustration.
Before you know it your child can sign, point or use their words to help you realise what it is wrong. I'll never forget the first time I was comforting melody after she woke in and she said "juice mummy". I cried. She was 19 months and 2days old making Ginny 4yrs and a few weeks old (being 2yrs, 6mons, 2wks and and 1 day older). I was still struggling through sleepless nights with Ginny and as proud as I was of Melody all I could think of was how many of those night Ginny may have wanted to just tell me she was thirsty and couldn't do so.
Ginny was 18months when she regressed and lost her words. Today she is 5years 8months 2weeks and 3days old and I've just spent the better part of two hours trying to comfort her and figure out why she was crying. She's still red faced and sweaty from the bout. Her sister is only 3years 2months and two days old today but she has spent the last couple of hours making me incredibly proud. I handed her her peppa pig doll and said it was time for doctor peppa and nurse melody to help make Ginny feel better cause was poorly. We gave her medicine, juice, sang her songs and laid with her until she settled. I congratulated nurse melody and doctor peppa on curing their patient and we celebrated with custard creams. Then the screams started up again. Melody wanted to cuddle Ginny and give her kisses to make her feel better but when Ginny is this worked up its too dangerous for Melody to try because she may accidentally hurt her. I put Melody in the other bunk and she started singing songs to help. I wanted to cuddle Ginny too but being pregnant its dangerous for me as well. I leaned over the bed with my tummy kept safe by the bedframe and mattress and tried my best to comfort her. In the end I popped Ed Sheeran on and by the 4th track she had calmed.
Maybe she was tired of my and her sisters voices, maybe the calpol had kicked in, I won't ever know. I'm not sure if the helplessness I felt now was worse than when she was a newborn but I think it was. I think you come to accept that it's natural with a newborn but knowing that your reception age child is still suffering because they can not tell you what is wrong tears you apart in an incredibly cruel way because you know they should be able to.
Today has been one of those days where I hate Ginny's autism more than anything else in the world. I know it's a part of her wiring but I damn it because of the way it makes her suffer. There's not much worse in the world than watching your child cry, as a parent there is nothing you wouldn't do to stop their suffering. Today I would have given anything to take away Ginny's autism and make her nuerotypical. Most days I only hope for her to learn to communicate or become higher functioning but today I wanted it gone.
2012 asd log: entry 13
April 13th, 2012
Friday the 13th, no surprise that today has been a difficult day then I suppose, it's been predestined.
Ginny started the day by waking late. Then she became adimit she had to get into the george forman to scoop out bacon grease, even when it was on!! I had to fight to keep ker away from it while finishing up her breakfast. Next she stole a green crayon and egg full jelly beans out of the office because grandad left it open! The rest of the day had been a battleto get her to keep her trousers and nappy on which we haven't had a problem with in ages. Lastly she has felt the need to throw things all day long.
Breaking, throwing, stealing, smashing, smearing... the joys. Ginny has been out of her special undersuits for the last few weeks, couple of months actually, and today she thought she'd smear :(. I'm sure she would have probably resorted to eating it if I hadn't caught her just starting on the carpet after taking Mels to the toilet. Having a child that smears is one of the hardest things to deal with. It's just so hard to come to terms with because it seems so extreme. So unnatural. So revolting.
The first time Ginny smeared I will never forget. I was making lunch and the smell hit me first. It was so overpowering and to come into the conservatory and find Ginny covered in her own feces as well as the entire conservatory was beyond traumatic. I was beside myself. I didn't know what to do and I must of stood there repulsed for a minute before I snapped out of it and ran Ginny to the tub to scrub her down. Once she was clean I then bathed her and went to clean up the mess and throw away her clothes. I know I screamed. I know I cried. I felt so not ready. I felt completely defeated.
It was a one off that time and then months later Ginny went into a phase and I had to come up with ways to keep her away from her nappy. First it was leggings with a swimsuit over it and clothing. Then it was unitards. Then catsuits. Pretty soon we needed houdini suits for sleep because in the night she'd wake and cover her room. It was the worst phase I've faced so far and it lasted for months. I have no idea how we got through it. It became quite apparent that I'd developed mild traumatic anosmia because of my tolerance. I could no longer smell it, my mind had locked the capability away from the overexposure and I had become completely desensitized.
When Ginny got over it I found it strange. Dealing with it had just become another part of my jobs and now I was terrified that it may again happen but she's popped 3times and smeared once so I heavily doubt it. It was barely any but I still scrubbed for about an hour. You can't help it. It just seems so wrong. No matter how many times you wash the same spot you are sure you need to continue or do it again. That first time I gave Ginny a second wash after I finished tending to the house. I washed my hands every 5minutes, I just could not feel clean again. I used a bottle of disinfectant.
Today that was not the worst thing. Today her destructive nature took the cake and it was a dark day for me. The way she could destroy so much of her sisters things disgusted me more than the smearing. I hated her. She's my little girl and I felt genuine hate towards her, not for just me but for her sister and the sister that was not yet born. She destoyed things that were for both of them. I care when she destroys her own things but it's not fair on for the girls to have an older sibling that takes no regard and has no repect for thier things. Why should Melody be punished for Ginny? When she broke something that was for the baby and that was the last straw. How could her unborn sister already have to be disadvantaged because of Ginny?
I couldn't help the rage. I felt it boil up and about to explode, I had to push her out of the room and lock myself into the kitchen. I felt as if I had to look at her I would hurt her even though I knew she wasn't realizing she'd done anything wrong. I had to scream. I had to cry. I had to cool down and count back from 100 and then start again. I hated myself more than anything. I hated myself for the hate I had for Ginny. For the fact that at that moment the hate was not just towards her condition but towards her. I had to push try to bury the hate I felt for myself to keep myself from self harming. Today I felt like I just couldn't take it. I felt like I just couldn't take anything anymore. I felt like I just wanted out of life forever and I cried longer than I'd expected to.
Today I wanted to give up on life. I felt like a complete failure. I felt like I just couldn't take another minute of it. I couldn't believe I was bringing another child into the world. I felt so selfish. I was so afraid. I was so afraid and I had no one. No family, a best friend thousands of miles away and a husband who'd be home late from work tonight like he always seems to be when I needed him. I felt so alone... and then she kicked me, she kicked and rolled and kicked again. The stress had gotten to her and she was damn well letting me know so I had no choice. I sang to her and walked around until she settled. Then I had a glass of water, washed my face and walked back into the living room.
Ginny was playing with some fabric and Melody was watching the aristocats. They both looked at me simultaneously. Melody said "hello mummy, cat cats" and then Ginny walked up to me smiling and lifted her arms out to me. They were oblivious what had happened. They were oblivious to what I had wanted to do to myself. They were oblivious to everything and that made me able to smile back and come down to Ginny's level for a cuddle which of course was an invitation for Mels to run over saying "me too, me too". I felt better after that cuddle. I squeezed them as if I'd never get another chance and they giggled. I gave them both kisses and got on with another load of washing.
I watched the house be dismantled and couldn't react. I moved around the house getting what I needed ready for dinner and lugging laundry around but I was numb. I knew that was the next step in this. I knew that's what had to follow my explosion so I could get by today. The schedule slid and nothing went in the order it normally did. My day ran late. Thre kids didn't get there dinner or to bed until an hour or more later than usual. It wasn't Just Ginny that desensitized me today. The day had been over all very stressful.
We had our offer accepted on a house but after the times that this has happened and fallen through it kicked off my nausea into gear big time. I was sick with worry. I just want to have a place sorted already so we can organize ourselves properly. Melody was displaying such brilliant creative play skills but the fact that Ginny lacked them entirely made it very difficult to deal with. The fact that I had loads more on my plate only to add a three year old wanting me to eat imaginary cupcakes every 4seconds didn't help either. Lastly I spent hours going through the files I could find to send off to the ukba for my ilr.
The particulars on types of mail and spacing throughout the last couple of years is enough to drive anyone mad, let alone a pregnant woman with raging hormones who is house hunting. The whole day has just been a miserable one. After dinner, I had a bath with the girls who had gone into we're-just-the-cutest-little-things-you've-ever-seen mode and were acting very sweet. I put a unitard under Ginny's pjs just to be on the safe side and sent her to hear her story with her sister.
They went to bed without a problem so I came downstairs to type up today's note and saw a notification that James had made one of my photos his profile pic. It was such an odd one to have chosen as it was from a holiday 3years ago and I hadn't seen it in ages. It is still one of my favourite pictures and seeing it again made me feel like everything had to be better tomorrow, after all there had been good times in the past and there had to be good times in the future, there had to be. As scarce as they may seem at times, they make the rest of the days worthwhile if you get to see another one.
Friday the 13th, no surprise that today has been a difficult day then I suppose, it's been predestined.
Ginny started the day by waking late. Then she became adimit she had to get into the george forman to scoop out bacon grease, even when it was on!! I had to fight to keep ker away from it while finishing up her breakfast. Next she stole a green crayon and egg full jelly beans out of the office because grandad left it open! The rest of the day had been a battleto get her to keep her trousers and nappy on which we haven't had a problem with in ages. Lastly she has felt the need to throw things all day long.
Breaking, throwing, stealing, smashing, smearing... the joys. Ginny has been out of her special undersuits for the last few weeks, couple of months actually, and today she thought she'd smear :(. I'm sure she would have probably resorted to eating it if I hadn't caught her just starting on the carpet after taking Mels to the toilet. Having a child that smears is one of the hardest things to deal with. It's just so hard to come to terms with because it seems so extreme. So unnatural. So revolting.
The first time Ginny smeared I will never forget. I was making lunch and the smell hit me first. It was so overpowering and to come into the conservatory and find Ginny covered in her own feces as well as the entire conservatory was beyond traumatic. I was beside myself. I didn't know what to do and I must of stood there repulsed for a minute before I snapped out of it and ran Ginny to the tub to scrub her down. Once she was clean I then bathed her and went to clean up the mess and throw away her clothes. I know I screamed. I know I cried. I felt so not ready. I felt completely defeated.
It was a one off that time and then months later Ginny went into a phase and I had to come up with ways to keep her away from her nappy. First it was leggings with a swimsuit over it and clothing. Then it was unitards. Then catsuits. Pretty soon we needed houdini suits for sleep because in the night she'd wake and cover her room. It was the worst phase I've faced so far and it lasted for months. I have no idea how we got through it. It became quite apparent that I'd developed mild traumatic anosmia because of my tolerance. I could no longer smell it, my mind had locked the capability away from the overexposure and I had become completely desensitized.
When Ginny got over it I found it strange. Dealing with it had just become another part of my jobs and now I was terrified that it may again happen but she's popped 3times and smeared once so I heavily doubt it. It was barely any but I still scrubbed for about an hour. You can't help it. It just seems so wrong. No matter how many times you wash the same spot you are sure you need to continue or do it again. That first time I gave Ginny a second wash after I finished tending to the house. I washed my hands every 5minutes, I just could not feel clean again. I used a bottle of disinfectant.
Today that was not the worst thing. Today her destructive nature took the cake and it was a dark day for me. The way she could destroy so much of her sisters things disgusted me more than the smearing. I hated her. She's my little girl and I felt genuine hate towards her, not for just me but for her sister and the sister that was not yet born. She destoyed things that were for both of them. I care when she destroys her own things but it's not fair on for the girls to have an older sibling that takes no regard and has no repect for thier things. Why should Melody be punished for Ginny? When she broke something that was for the baby and that was the last straw. How could her unborn sister already have to be disadvantaged because of Ginny?
I couldn't help the rage. I felt it boil up and about to explode, I had to push her out of the room and lock myself into the kitchen. I felt as if I had to look at her I would hurt her even though I knew she wasn't realizing she'd done anything wrong. I had to scream. I had to cry. I had to cool down and count back from 100 and then start again. I hated myself more than anything. I hated myself for the hate I had for Ginny. For the fact that at that moment the hate was not just towards her condition but towards her. I had to push try to bury the hate I felt for myself to keep myself from self harming. Today I felt like I just couldn't take it. I felt like I just couldn't take anything anymore. I felt like I just wanted out of life forever and I cried longer than I'd expected to.
Today I wanted to give up on life. I felt like a complete failure. I felt like I just couldn't take another minute of it. I couldn't believe I was bringing another child into the world. I felt so selfish. I was so afraid. I was so afraid and I had no one. No family, a best friend thousands of miles away and a husband who'd be home late from work tonight like he always seems to be when I needed him. I felt so alone... and then she kicked me, she kicked and rolled and kicked again. The stress had gotten to her and she was damn well letting me know so I had no choice. I sang to her and walked around until she settled. Then I had a glass of water, washed my face and walked back into the living room.
Ginny was playing with some fabric and Melody was watching the aristocats. They both looked at me simultaneously. Melody said "hello mummy, cat cats" and then Ginny walked up to me smiling and lifted her arms out to me. They were oblivious what had happened. They were oblivious to what I had wanted to do to myself. They were oblivious to everything and that made me able to smile back and come down to Ginny's level for a cuddle which of course was an invitation for Mels to run over saying "me too, me too". I felt better after that cuddle. I squeezed them as if I'd never get another chance and they giggled. I gave them both kisses and got on with another load of washing.
I watched the house be dismantled and couldn't react. I moved around the house getting what I needed ready for dinner and lugging laundry around but I was numb. I knew that was the next step in this. I knew that's what had to follow my explosion so I could get by today. The schedule slid and nothing went in the order it normally did. My day ran late. Thre kids didn't get there dinner or to bed until an hour or more later than usual. It wasn't Just Ginny that desensitized me today. The day had been over all very stressful.
We had our offer accepted on a house but after the times that this has happened and fallen through it kicked off my nausea into gear big time. I was sick with worry. I just want to have a place sorted already so we can organize ourselves properly. Melody was displaying such brilliant creative play skills but the fact that Ginny lacked them entirely made it very difficult to deal with. The fact that I had loads more on my plate only to add a three year old wanting me to eat imaginary cupcakes every 4seconds didn't help either. Lastly I spent hours going through the files I could find to send off to the ukba for my ilr.
The particulars on types of mail and spacing throughout the last couple of years is enough to drive anyone mad, let alone a pregnant woman with raging hormones who is house hunting. The whole day has just been a miserable one. After dinner, I had a bath with the girls who had gone into we're-just-the-cutest-little-things-you've-ever-seen mode and were acting very sweet. I put a unitard under Ginny's pjs just to be on the safe side and sent her to hear her story with her sister.
They went to bed without a problem so I came downstairs to type up today's note and saw a notification that James had made one of my photos his profile pic. It was such an odd one to have chosen as it was from a holiday 3years ago and I hadn't seen it in ages. It is still one of my favourite pictures and seeing it again made me feel like everything had to be better tomorrow, after all there had been good times in the past and there had to be good times in the future, there had to be. As scarce as they may seem at times, they make the rest of the days worthwhile if you get to see another one.
2012 asd log: entry 12
April 12th, 2012
It was my turn to get up with the girls this morning. However only Melody wanted to get up so James had to get her out of bed when he woke up. James made pancakes, as he wanted pancakes, even though Mels had already had cereal the kids always have space for pancakes. Then we all got dressed as we had to be out the door to view properties all day.
Not a particularly fun day driving around trying to find a place as I'll be without documents the week after next so we ideally NEED to have a place before than to be secure before baby's arrival. My mother will be coming to help us with Ginny for a month after baby is born so we want to make sure we are well settled before then.
We went home for lunch and had a relax and play around the house before heading out to view our last property in the afternoon. Tomorrow we hope to make an offer on a preoperty that may not be everything we've wanted but pretty much ticks the boxes on what it is needed. It will suit our family just fine once I'm driving.
We took this evening easy and popped chicken and chips in the oven for the girlies. they scrafed them down followed by cornettos aand then watched a movie before bed. Because we didn't spend much time at home I only had to vaccum twice today and put away the laundry. Our very easy Thursday has come to a perfect end with James going to the shops to get me some ben and jerry's cookie dough icecream and a sprite before catching full metal jacket on the telly before bed.
It was my turn to get up with the girls this morning. However only Melody wanted to get up so James had to get her out of bed when he woke up. James made pancakes, as he wanted pancakes, even though Mels had already had cereal the kids always have space for pancakes. Then we all got dressed as we had to be out the door to view properties all day.
Not a particularly fun day driving around trying to find a place as I'll be without documents the week after next so we ideally NEED to have a place before than to be secure before baby's arrival. My mother will be coming to help us with Ginny for a month after baby is born so we want to make sure we are well settled before then.
We went home for lunch and had a relax and play around the house before heading out to view our last property in the afternoon. Tomorrow we hope to make an offer on a preoperty that may not be everything we've wanted but pretty much ticks the boxes on what it is needed. It will suit our family just fine once I'm driving.
We took this evening easy and popped chicken and chips in the oven for the girlies. they scrafed them down followed by cornettos aand then watched a movie before bed. Because we didn't spend much time at home I only had to vaccum twice today and put away the laundry. Our very easy Thursday has come to a perfect end with James going to the shops to get me some ben and jerry's cookie dough icecream and a sprite before catching full metal jacket on the telly before bed.
2012 asd log: entry 11
April 11th, 2012
James got in at 1am and woke me. His parents got back at around 2am so we went upstairs around 2:30. While James knocked out immediately his snoring kept me up for the next 2hours. He got up with the girls in the morning which is lucky for him because I probably would've murdered him if he tried to wake me. He hadn't got the girls ready for their outing even though he was going to be spending the day on his own afterwards so at 9 I had to get the girls and I dressed and ready for our 10am pick up.
We spent the day at butterfly world. For the most part the children enjoyed themselves so the minor things that may have upset me while we were there it didn't really matter. The children explored the insect area with their magnify glasses and Ginny just walked about glancing at the tanks. She stopped at the butterfly and caccoon cases for longer periods and liked the grasshoppers too. Ginny really liked all the sand and pebbles and was well behaved in the outside play area but Melody was still under the weather and grumpy. She enjoed going down the large slide with her friend Monty's mummy. There were some lovely flower garden that the children explored and plenty of logs for them to walk across and make up their own games with the way children do. Ginny joined in a couple of times ut was much more interested in the pebbles.
The children had sandwich boxes in the cafe but a sanwhich box would never fill Ginny, she scarfed down the snacks I'd brought with us aswell but I know she'll require more food when we get home. The indoor butterfly area was lovely but a bit small. The children were a bit unsure of the butterflies landing on them. Ginny was not as bothered. Unfortunately I couldn't catch a photo of her with them on her because she was exploring the colored glass pieces in the cement flooring and would shake them off when overexcited by the patterns. Melody sat next to her to observe what she was up to and She explored it until I felt overheated.
We headed back to the cars an hour later. Ginny kicked at Monty's seat a bit, Melody's friends are very good with Ginny but starting to wonder why the rules for Ginny are different than their own. I'll need to dig out the books explaining it that we used before for the children in Carlisle. Melody dozed off on the ride home and had a nice snuggle on the sofa when we got home while Ginny went straight to played with her fabrics while I got the girls a drink and some biscuits ready. James went up for a nap and I called him down when it was time for him to feed Mels her tea. Ginny had already eaten up all of hers.
I went up for a bath and Ginny joined me. After I got out she played in the bath for about another 40minute happily giggling away while Melody watched a movie with daddy downstairs. Ginny joined them when she was out and dressed for bed as I had to get ready for my mummy's dinner out. It was so great to get out for the evening without the children. I can't eat much at the moment because I haven't stretched enough to fit a proper meal in with the baby but there's nothing better than great company and good food. I got in before midnight and did some reading to get me tired enough to sleep.
James got in at 1am and woke me. His parents got back at around 2am so we went upstairs around 2:30. While James knocked out immediately his snoring kept me up for the next 2hours. He got up with the girls in the morning which is lucky for him because I probably would've murdered him if he tried to wake me. He hadn't got the girls ready for their outing even though he was going to be spending the day on his own afterwards so at 9 I had to get the girls and I dressed and ready for our 10am pick up.
We spent the day at butterfly world. For the most part the children enjoyed themselves so the minor things that may have upset me while we were there it didn't really matter. The children explored the insect area with their magnify glasses and Ginny just walked about glancing at the tanks. She stopped at the butterfly and caccoon cases for longer periods and liked the grasshoppers too. Ginny really liked all the sand and pebbles and was well behaved in the outside play area but Melody was still under the weather and grumpy. She enjoed going down the large slide with her friend Monty's mummy. There were some lovely flower garden that the children explored and plenty of logs for them to walk across and make up their own games with the way children do. Ginny joined in a couple of times ut was much more interested in the pebbles.
The children had sandwich boxes in the cafe but a sanwhich box would never fill Ginny, she scarfed down the snacks I'd brought with us aswell but I know she'll require more food when we get home. The indoor butterfly area was lovely but a bit small. The children were a bit unsure of the butterflies landing on them. Ginny was not as bothered. Unfortunately I couldn't catch a photo of her with them on her because she was exploring the colored glass pieces in the cement flooring and would shake them off when overexcited by the patterns. Melody sat next to her to observe what she was up to and She explored it until I felt overheated.
We headed back to the cars an hour later. Ginny kicked at Monty's seat a bit, Melody's friends are very good with Ginny but starting to wonder why the rules for Ginny are different than their own. I'll need to dig out the books explaining it that we used before for the children in Carlisle. Melody dozed off on the ride home and had a nice snuggle on the sofa when we got home while Ginny went straight to played with her fabrics while I got the girls a drink and some biscuits ready. James went up for a nap and I called him down when it was time for him to feed Mels her tea. Ginny had already eaten up all of hers.
I went up for a bath and Ginny joined me. After I got out she played in the bath for about another 40minute happily giggling away while Melody watched a movie with daddy downstairs. Ginny joined them when she was out and dressed for bed as I had to get ready for my mummy's dinner out. It was so great to get out for the evening without the children. I can't eat much at the moment because I haven't stretched enough to fit a proper meal in with the baby but there's nothing better than great company and good food. I got in before midnight and did some reading to get me tired enough to sleep.
2012 asd log: entry 10
April 10th, 2012
Ginny has been up all night. She's bounced on her bed. he's laughed and cried. She's run around in circles and sat on her windowsill looking outside. She's done everything but sleep. James thinks that because II don't get up every five minutes I must be fast asleep. If there's one thing I've learned getting up repeatidly does nothing for you, the best you can do is try to ignore it unless she sounds like she's up to something dangerous, she's ill or Melody is still in the room. But Melody was in our bed still unwell and letting us know it. If she's had her medicine and a drink than all you can do is try to sleep. Sleep won't much likely happen but at least lying in bed with your eyes closed is some kind of rest. Sometimes for weeks at a time it's the only kind of rest we get, before Ginny's medication it was the only type in months.
When I dragged myself downstairs this morning just before James set off for work, Ginny thought she was going to go ahead and get some sleep. Silly Ginny. I lugged Ginny out of bed, took off her jamies and changed her nappy. She wasn't very happy with me lying on the landing tantruming, not understanding why I wouldn't let her sleep if she finally let her sleep but shortly after I came back with her clothes for the day and dressed her she got over it. We went downstairs and she had a few slices of our cinnamon raisin bread with butter and two cups of milk.
Reenergised she started to hop around the living room making lovely little happy noises. It looked lovely and sunny out but today we had to wait in for a delivery. Ginny's dadda matt had ordered Ginny a sand/water pit because he forgot to get Ginny and easter basket sorted and sent out on time, I told it was fine because she'd have more than enough goodies and she'd get more use of that and he'd probably pay less getting it to us. As we have to wait in anyway and the holiday is over I figured it was major clean up time. After sorting dishes and the washing I scrbbed the kitchen and bathrooms, vaccumed and washed the floor in the kitchen.
The day goes by so much faster when you have these kinds of things to get done, especially when you have to do them and still keep an eye on the kids. I prefer doing these things when the girls are out of the house but with a two week break, no dice. One of the times I checked on the girls Ginny had found a crayon under the sittie and was muching on it. I almost lost a finger trying to retrieve it. I should've hooked a hand at the sides of her jaw so she couldnt but didnt think so it took me what felt like forever to get my hand back. I was fast enough to get it out unscathed and kept her still enough to not break any bones or my skin. Lucky really for reacting correctly and promptly as overtired as I felt.
As usual afterwards Ginny was confused and a bit scared. She didn't really understand what had happened or that she had hurt me so it's so much more difficult to reprimand her for her actions. Melody was scared because I'd creamed but she calmed when I told her I was okay and that it was an accident. I made Gin a salami sandwich with crisps for lunch and Melody had a yoghurt, bread and cheese, all of which she barely touched but the effort was much better than the days before. Hopefully it meant she was getting better. I went back to cleaning and continued to check on the girls periodically. Mels enjoyed playing with her mini princesses and Ginny liked her Dora the Explorer marathon.
When I finally finished, I decided I'd take a 10minute fb break as the package had still not arrived and I needed to think of what we were going to have for dinner anyway...As soon as I started dinner, the bell rang for our delivery. I popped all of Ginny's fabric bits into her large apple and she sat in it happily joined shortly by her sister. I went on to make dinner and when James got home we sat at the table and both girls ate very well. The kids and James watched some national geographic while I did the dishes and cleared the table. James is going out this evening so after he's gone I will probably kock out for the evening as I'm sure I don't have enough energy to even read some of my book.
Ginny has been up all night. She's bounced on her bed. he's laughed and cried. She's run around in circles and sat on her windowsill looking outside. She's done everything but sleep. James thinks that because II don't get up every five minutes I must be fast asleep. If there's one thing I've learned getting up repeatidly does nothing for you, the best you can do is try to ignore it unless she sounds like she's up to something dangerous, she's ill or Melody is still in the room. But Melody was in our bed still unwell and letting us know it. If she's had her medicine and a drink than all you can do is try to sleep. Sleep won't much likely happen but at least lying in bed with your eyes closed is some kind of rest. Sometimes for weeks at a time it's the only kind of rest we get, before Ginny's medication it was the only type in months.
When I dragged myself downstairs this morning just before James set off for work, Ginny thought she was going to go ahead and get some sleep. Silly Ginny. I lugged Ginny out of bed, took off her jamies and changed her nappy. She wasn't very happy with me lying on the landing tantruming, not understanding why I wouldn't let her sleep if she finally let her sleep but shortly after I came back with her clothes for the day and dressed her she got over it. We went downstairs and she had a few slices of our cinnamon raisin bread with butter and two cups of milk.
Reenergised she started to hop around the living room making lovely little happy noises. It looked lovely and sunny out but today we had to wait in for a delivery. Ginny's dadda matt had ordered Ginny a sand/water pit because he forgot to get Ginny and easter basket sorted and sent out on time, I told it was fine because she'd have more than enough goodies and she'd get more use of that and he'd probably pay less getting it to us. As we have to wait in anyway and the holiday is over I figured it was major clean up time. After sorting dishes and the washing I scrbbed the kitchen and bathrooms, vaccumed and washed the floor in the kitchen.
The day goes by so much faster when you have these kinds of things to get done, especially when you have to do them and still keep an eye on the kids. I prefer doing these things when the girls are out of the house but with a two week break, no dice. One of the times I checked on the girls Ginny had found a crayon under the sittie and was muching on it. I almost lost a finger trying to retrieve it. I should've hooked a hand at the sides of her jaw so she couldnt but didnt think so it took me what felt like forever to get my hand back. I was fast enough to get it out unscathed and kept her still enough to not break any bones or my skin. Lucky really for reacting correctly and promptly as overtired as I felt.
As usual afterwards Ginny was confused and a bit scared. She didn't really understand what had happened or that she had hurt me so it's so much more difficult to reprimand her for her actions. Melody was scared because I'd creamed but she calmed when I told her I was okay and that it was an accident. I made Gin a salami sandwich with crisps for lunch and Melody had a yoghurt, bread and cheese, all of which she barely touched but the effort was much better than the days before. Hopefully it meant she was getting better. I went back to cleaning and continued to check on the girls periodically. Mels enjoyed playing with her mini princesses and Ginny liked her Dora the Explorer marathon.
When I finally finished, I decided I'd take a 10minute fb break as the package had still not arrived and I needed to think of what we were going to have for dinner anyway...As soon as I started dinner, the bell rang for our delivery. I popped all of Ginny's fabric bits into her large apple and she sat in it happily joined shortly by her sister. I went on to make dinner and when James got home we sat at the table and both girls ate very well. The kids and James watched some national geographic while I did the dishes and cleared the table. James is going out this evening so after he's gone I will probably kock out for the evening as I'm sure I don't have enough energy to even read some of my book.
Subscribe to:
Posts (Atom)