Please help Annmarie and Brandon reach their goal...

If you can manage to give at all and would like to help an amazing family of two please check out this just giving link. Annmarie is an amazing single mum to her severely autistic son Brandon. In the last year his mobility has dwindled significantly and looking after him has become more of a challenge than ever but Annmarie would never give up on him, she has a heart of gold and more strength than she realises.

http://www.justgiving.com/annemarie-dawson/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=annemarie-dawson&utm_campaign=pfp-share

Desensitized

6am in the Pavitt household and we hear crashing and banging downstairs. Melody had insisted on having a sleepover with Ginny downstairs in our living room and we'd made sure to secure it so that there was no way Ginny could access the garden or playroom. We didn't, however, lock the girls into the living room. Big mistake.

James ran downstairs and found Ginny sat inside of the refrigerator throwing out its shelves and their contents. He lifted her out and took her up to her bed before returning to our room with a "your turn", I stopped nursing and handed him Isa before heading down to assess the damage. Entering the kitchen I actually thought 'I've woken up to much worse' and shrugged my shoulders. I started to tidy up when I thought 'wait, let me take a few pics to fb later' and after doing so I put everything away, wiped shelves included, and mopped up the single cream that had spilled all over the floor. Melody walked in with a sad look on her face and said "I don't want to be all on my own, where's Ginny", she spotted that I was already cleaning and I said "why don't you go up to daddy and I'll be up soon for a cuddle", she turned and off she went.

I went into the living room, gathered up the bedding and carried it upstairs, I told Ginny that what she did was very naughty and dangerous and then gave her a kiss on the forehead. Melody walked in moaning, she'd been sent to her room for making too much noise and waking the baby. I turned on the bubble machine so they could both relax and have a look at it and went back to bed. Isa saw me and immediately wanted milk. Not much later melody returned to our room, bored with the bubbles, and started to show us a dance she learned at school. James caught a glimpse on the screen of movement though Ginny's bed still looked like she was under her covers, he went to investigate and found her covers bunched up and Ginny on the floor tearing up books. Again I was tagged in to take over.

There wasn't as much damage as it seemed, only one book cover was torn and the rest was just books thrown around so I sat on the floor and uploaded the photos, James must have seen me on the monitor because he came in to see what was going on and tell me he was going to run the bath when he caught a wiff of something. I've had an on going cold and couldn't smell a thing but Ginny was in need of a change. It seemed as if she had been sat in it for while so I began to feel badly, the need to go was probably what woke her in the first place and the destruction that followed probably had to do with not being able to get back to sleep afterwards. 

It made my heart ache to think what it must be like to need someone for all of your care needs and not be able to tell someone you needed help when you did. Many of us worry about that becoming the case in our old age but my daughter's entire life may be this way. It's the case for many but easily forgotten. For Virginias's school we were asked to send the children in dressed in stripes and spots with a donation for children in need, one of our favoured charities, at Melody's school they wore pyjamas. Ginny made cakes at school and I bought five so we could each. This year the rickshaw challenge expanded to all four uk nations with it's riders being young people supported by funding raised by bbc children in need. It's quite a challenge and a very worthwhile cause but as usual though it showcases the disabled it's an event that still requires the more abled disabled person. 

Ginny's after school club receives quite a bit of it's funding from children in need and the school was approached to see if any of its young people would take part in the challenge. Although the bbc has visited the school was quite shocked, it seemed they did not even comprehend the severity of the conditions the children who attend the school. Hearing this from the deputy head at one of the various meetings I have for Ginny really sunk in. They did not realise how much support the children actually needed, how could they? Many of them, though not all, looked completely 'normal' meanwhile there were so many people people who quite clearly looked disabled and could take part, and of course there those who didn't look the part, were disabled but not as severely. It is a world you can not completely understand unless you live with it. I'd love for people to just spend a day with us to see what it's like, like an incredibly unconventional b&b their minds would be opened. It is the reason I write and post photos, it may not give the full effect but it's a glimpse at what our day to day can be like.

Ginny's morning mischief really upset James, sometimes I'm more shocked by the way it hits him then the actual event. Sometimes I wonder how he's not lost his sensitivity to our life but then again as a stay at home mom I am the one who has dealt with everything imaginable under the sun. Not much can shock me with regards to Ginny's actions. There was a time when I'd heave with tears, a time when disgust would lead to nausea, a time when I didn't think I had what it took to be her mom. The person I was seems like a complete stranger. Who was I before becoming her carer? I think of it often and always arrive at the same answer, a child. This is the only adult life I've ever known. I never finished my studies, I never travelled like I'd planned, I never had a career, I never even had time to just be a couple with my husband as we'd met when Virginia was just over a year old. And now, this will be a permanent part of the rest of my life. It’s clear that he doesn’t want it to be a permanent part of his though.

Ginny will never grow out her autism. There won't be a tablet she can take that will instantly teach her how to care for herself and make up for all of the milestones we've missed through the years. I will always be her carer and when I can no longer care for her then what? I can't even bare the thought. It's hard enough to imagine she will one day no longer be a child, that she too will enter adolescence and then womanhood, that she will grow old, that she may have to live her entire life inside her head. It breaks my heart to imagine it, my beautiful little girl forever held captive by the elephant that has taken over her life. I pray she will grow to be more in control, that she will fight him and break through the fog, that she'll find a way to be live as independently as possible but who knows, well just have to wait and see.

Christmas Magic

Our glorious summer has just come to its end and already Christmas is making an appearance in shops all over the country. There is no doubt that the holidays will soon be upon us but what does that mean? Expenses? Temperature drops?Holiday cheer? Good will to all men? We all remember the magic that surrounded Christmas for us as children and now that we have had the joy of having children of our own we want to ensure the magic is not lost for them; but with the temperature drops come colds, with presents come expense and in the end the cheer only reaches us when we have successfully given our children the Christmas of their dreams.In the stressful march until that day one thing parents can at least look forward to is a better night’s sleep for their little ones as days grow shorter and the sun no longer creeps around the curtains causing confusion. In the Pavitt household the setting sun brings no relief. If our unwanted lodger decides it, not even our daughter’s sleep medication can guarantee our 7yr old will sleep a wink, never mind an entire night.

Our Ginny is one of the estimated 695,000 people in the United Kingdom affected by her hidden lifelong condition. Many under the umbrella of the spectrum will share her sleep issues but not all. What they will all share is difficulty with social communication, difficulty with social interaction, and difficulty with social imagination. Some will live independent lives while others may require a lifetime of specialist support,and for the most part they look just like everyone else around.However, the longer you watch them the more you notice that their normalcy is an optical illusion. It is a cruel trick of nature that makes you work double time to figure out why these beautiful creatures don’t seem to fit in the way you’d expect them to. Their camouflage disguises the different processing system within that makes life in our world an incredibly difficult one for them. These 695,000 all have a lodger of their own, each different from the others but all an elephant of varied proportions with the name of Autism.

Ginny loves Christmas but along with the excitement comes the stress of a set of social rules for how a child “should” behave themselves traditionally during the holidays. My Ginny is a 57/60 on the childhood autism rating scale. She was diagnosed with Classic Autism with severe learning difficulties at 2 1/2yrs and stopped speaking at 18months. She is now 7yrs old and continues to be nonverbal and severely autistic despite the many people who have always stopped to tell me “but she is so beautiful, you wait and see, she will grow out of it”. My frustration with these people used to be immeasurable but with time I’ve come to see how difficult it is to digest the idea of this seemingly “perfect” child having such a “flaw”. After all a 7year old trying to grab all of the presents and sweets at Santa’s grotto is just down to bad parenting, isn’t it? What if it’s not that simple? What if no matter how many times that child is reprimanded the child simply cannot help trying to do so again? What if someone else is pulling the strings and as much as the child would like to keep from committing the act, their puppeteer’s strength istoo much to bare?

Until recently I purely believed it was completely up to lack of understanding, but after reading ‘The Reason I Jump’, a translated book written by Naoki Higashida, a severely autistic young man, who describes his inner turmoil in depth Ihave begun to wonder more and more how much any of us really do know about autism. I would give anything to know what is going on behind Virginia’s beautiful eyes. To know just how much she comprehends and why she does the things that she does. What wakes her in the night and what her favourite colour really is. If I could just have her without our elephant’s interference for a day, I would make not of all I could to make sure that when he again took over I was at least doing all that I could for her. I think the hardest part of caring for a child as severely affected by autism is the uncertainty. Nothing can compare to not knowing whether you are doing all you can for your child. Nothing can make you feel more of a failure.

Hearing me speak of Ginny and her condition you would probably assume she is an only child but she is actually the oldest of my three girls even if it is believed she has the least understanding. Melody and Evaluisa are both, as far as anyone can tell so far, neurotypical children. Though I try my hardest to give them each their personal spotlight I often fear they also live in the shadow of our lodger. At only 4years old Melody has a tremendous amount of responsibility. If I step out of a room she must make sure Ginny does not do anythingto hurt herself or anyone else. She also has to live knowing that if she doesn’t securely put away her prized possessions it is quite likely that her sister will destroy them, and tounderstand that her sister does not do these things out of malice. My magnificent Melody is the star of the household and her love for her sister knows no bounds. She is always there to remind me that if she would like a treat, her sister most likely would like the same. She sings Ginny songs when she is upset and prays every night that god look after her sister and help her learn to play properly and speak. She is also a brilliant big sister to her year old Isa and tries to set a good example for her.

During the holiday season I could get lost in a haze and easily stop from setting up things that Ginny could get her hands on and destroy but magnificent Melody saves the day and brings the magic of Christmas with her. Having a child like Ginny, presents are far from conventional. We stuff stockings with tubes of crazy soap and shaving foam and fill gift bags with metres of fabric from the market. We ask for gift experiences like theme park tickets and horse riding lessons and camping trips instead of toys and puzzles. Then again, with two neurotypical children in the mix we cannot forget the importance of “normal” Christmas gifts and activities for them so we attend lights up, pantomimes and Christmas parties that with time Ginny has come to enjoy and seemingly look forwards to. Physical presents, on the other hand, will always be at risk and no matter how well Melody copes with her sister’s condition I watch her heart break a little more every time something is destroyed. During normal times we can easily replace casualties but at Christmas the factor of old Saint Nick to consider. Gifts from Mr. Claus himself are precious.

Now we have to think out of the box by thinking of one. The best gift Ginny has ever gifted Melody was a pink tuck box. It stores all of Melody’s most special things and keeps them safe from our elephant. This Christmas Ginny may need to gift Melody a new one as books and puzzles have recently become a target and it has become harder and harder to hide them to keep them safe. We have been very lucky that though our Ginny is a climber she has not yet taken to scaling Christmas trees. She much rather sit back and watch its beautiful lights while trying to sniff out where mummy has hidden the candy canes over the smell of pine. Besides the frustration Ginny feels over time off school during the holidays Christmastime is probably one of the most manageable times for us because Virginia enjoys it so much. There are many children on the spectrum who find even the uncertainty of not knowing what is behind their wrapped parcels too stressful to cope with but Ginny relishes in the excitement of the different and in her own way sprinkles her own Christmas magic by showing us she is aware of the holiday and how much she does love it by pulling Christmas books out of shelves at church, in book shops, and at home as we approach the season.

http://ginnybeanasd.blogspot.co.uk/
https://www.facebook.com/OurElephantNamedAutism?ref=stream

Hate

You should never feel that your child is ruining your life. Having a child should be a joyous occasion, their life should fill your days with warmth, making you proud as they grow into the amazing person you mould them into. As a mother I love all of my children, at times I also hate them. They anger they pry out of you is like nothing you could imagine before them. You know that your are doing everything you can for them and the disappointment from their lack of appreciation and appallingly bad behaviour can shame you into hatred. The hatred never lasts while the shame and disappointment may linger longer than you'd imagined it would. It makes you doubt everything about yourself. Is it your weakness that has caused them to behave in such a manner? Your parenting? Maybe it boils down to breeding? Was it just the genetic combination of your partner and your own DNA that created this tantrum, disrespect or lack of understanding in your offspring? You just don't know but you would do anything in your power to ensure it were something correctable. Could it just boil down to need of better discipline? Could it be as simple as a trip to the naughty step or as worrying as good spank?

I often look at Melody and know that most of our disputes stem from us being too much alike. Her headstrong, opinionated, bad tempered bossy nature was most definitely inherited and the fortune of wanting for nothing but a big sister she could look up to and play with as oppose to one she will forever have to look after and love despite the hurt she brings with her lack of understanding. Melody was so pleased when Evaluisa was born. She finally had her own little sister and got the right to call herself a big sister by sibling sequence when in truth she was born into the role herself because of Ginny's diagnosis.

People always ask me how I manage on my own with three children of my girls respective ages with Ginny so profoundly affected by her condition and I tend to say I just do. When you have no other choice you just get on with it. Ginny makes me able to deal with her disability but to be honest the reason I manage is Melody. Melody is not yet 4 1/2 but she is my rock. She is my extra set of eyes and ears, responsible for making sure Ginny doesn't do anything she shouldn't whenever I have to cook, clean or get on with any of the additional perks of home life. Home life that wouldn't be possible without Melody.

Your usual four year old has to worry about what shoe goes on what foot or the words to their favourite song but my Mels never knows whether her putting a toy down to run to the loo means coming back to find it in pieces. If only the pieces were just things but to a little girl of four years old those favourite books, puzzles and dolls are so much more and it's pieces of a broken heart find myself trying to mend. Today Melody spent most of the day out with her grandparents. Having lost my eyes and ears for the day there were various casualties and many of those casualties were brand new, most belonging to Melody.

On days like today I feel like my wanting to give Ginny the best quality of life, keeping her home instead of sending her into residential care, means ours quickly depreciates. The pressure of James and his family wanting me to send her away creeps in. Picking up the broken pieces of Melody's precious things is worse then losing any of my own. Any frustration or anger I may feel about Ginny reeking havoc on my household and possessions flails in comparison to what I feel for the actions she takes against her sisters who do nothing but love her. Evaluisa at just a year will quickly have follow in Melody's footsteps, lightening her burden but taking on a weight she should never have to carry but one she has been born to. Our entire way of life is shaped by the elephant that sits upon our shoulders. It's a greedy thing that never ceases to want more from us than we have to give and never fills no matter how well it feasts on our misery growing fatter by the second.

Hate is a very strong word. It is a deep and emotional extreme dislike and in this instance and quite often in our case it's directed at our unwated lodger. Mr Elephant couldn't care less and I am often convinced that my hatred fuels his power over our household. The more we suffer the more oblivious it leaves my Ginny and the fear and suffering in her eyes when she is reprimanded for the actions the invisible hands upon her own force her to take part in leave me feeling like the villain of our story. I can't help but wonder if in some way I am, if somehow I brought this all on my family, if something I did brought the lodger in to prey on my children.

We all fear predators and are cautious of who we allow around our loved ones but our Elephant we call autism was stealthy, we never saw him coming but he slipped past us snuck into our home trying his hardest to tear us all apart and ruin us. Everyday he smirks when I lose my temper and relishes in tears shed and cries of frustration. He creeps up on us when all is still in quiet and destroys what he can when he can and my hate for him only grows. He steps between my husband and I and puts irrational fear in the eyes of my little girl as she screams through the nightmares i cant seem to wake from. No matter how safe I try to make my home we can never seem to make it fully autism proof and our lodger find his way in past the locks and safety measures. Today my hate for him is at its peak and I can only hope that tomorrow he'll share in my exhaustion and stay in bed but we'll have to see.

Melody's bit to promote Awareness :)

Melody's bit to promote Awareness :)

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.

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.

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.

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.

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.

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.

2012 asd log:entry 9

April 9th, 2012

Another bad night with Mels and her fevers, James forgot to relatch Ginny's room and the silent ninja let herself downstairs, climbed onto the countertop and helped herself to rolled icing, crisps, and a packet of sweets before breakfast ...Yay! Mommy got to clean it all up this morning! And now she's got a munchkin with a sugar high on her hands. We had more of the decorated hard boiled eggs for breakfast and then watched Enchanted. Melody really enjoyed it Ginny wasn't impressed.

Ginny found the dough we made afterwards for our Cinnamon raison loaf much more interesting. she liked poking and stretching it. Then she realized she could smell and eat it too...That's when it became time for her to be guided out of the kitchen before she became a dough ball. That reeally upset Ginny. She kicked and screamed and threw her arms around in protest but I couldn't leave the dough to rise with Ginny around. I pulled out her basket of fabrics and hoped she'd settle with them. Eventually she found her favourite piece and started to play still grumbling at me every so often.

I went to put away dishes, wash up what I used to make our dough, load what we'd used for our breakfast, put away clothes from the airing cupboard, and start another load of laundry. Everytime I came back into the living room Ginny had something different out. Before long it looked like a war zone in there. Melody still being unwell was cuddling up under their Easter blanket watching the winnie the pooh Easter special, not bothered by the mess. Giny started to stomp about and it was getting around the time when you know it's about lunch.

She had a couple of spinach and ricotta cannelloni and two glasses of fresh orange. That made her a happy bunny for long enough to sort her sister a cheese sandwich and some crisps. Melody only ate about two bites and half her drink before abandoning her table. Ginny being a greedy guts replaced her at the small table and finished her lunch as well!! She seemed much more content afterwards and went to sit in the laundry basket with her favorite piece of fabric and began to"bididididda dapdapdapwahhhdap" merrily.

I haven't felt very well this afternoon so I don't think I've been much fun and it's cold and rainy outside. Luckily James will be getting home about an hour early so fingers crossed I can relax a bit after making dinner. Ginny and Mels came over to give me some lovely cuddles when I sat for a minute to relax. Ginny likes to explore faces so she tugs and pokes at me before giving me a few smacks. I know she doesn't mean to hurt me, she just gets very excited. I remind her that we have to play calm and gentle and she digs her chin into my shoulder and pulls me close for a hug.

I know that looking at the way Ginny treats me from the outside must seem very strange but I know this is the only way she manages and that she is just showing me affection in her own way. Melody laughs and says "silly Ginny mummy, I love her" Somehow she know that this is just the way Ginny does things and accepts it. Times like that she makes me so proud to be her mom. She is so good with her big sister and for the most part very understanding. I give both of my munchkins a big hug and and a kiss and know that this is why makes doing it all worthwhile. No matter how tired and worn out I am they make it manageable.

Melody insists that she needs to dress like princess tiana so that we can watch the princess and the frog and that Ginny should be princess Jasmine so I go upstairs and get costumes out of their dress up box. Mels Jasmine costume is a new one but she still wants her sister to borrow it, the bottoms are huge so they slide off even Ginny if not tied up. I tidy up again and vaccum for the third time before James gets home and get to dinner. James says ginny looks like a little buddha the way she's sitting with her belly out in the jasmine costume and both girls faces light up when they see daddy. Ginny always makes a very excited giggly noise when James gets in and both girls want cuddles straight away.

After dinner we unwind for a bit before the bedtime routine begins. Baby has been somersaulting all afternoon so I begin to feel very sick and James takes over. Being sick is never fun. Being sick and feeling like a whale although people still don't always realize you're pregnant is even worse. To James, our friends and I quite obviously look very pregnant but to most others they don't usually realize unless I have my hands on my belly. I'm only 24weeks and I already feel ike I'm running out of space. Both my girls were 4weeks early so we don't imagine I'll carry full term but i try to take things easy as I wouldn't want to go into labour any earlier than that and I've already spent a week in hospital for observation last month.

It's much harder to take things easy when you already have children. It's even more difficult when one of your children are disabled and both of them are on a two week break of school. Next week I'll be taking two days away to visit friends up in Carlisle with the girls and I know it will be like any time I'm away with the girls. I won't know what to do with my hands and I'll constantly be looking around for them even though they haven't come with me. I'm a bit nervous about it but I know the night away will do me some good. I hope to finally get my hair cut while I'm away, I feel like a lion with my hair in such a mess and I hate it. It will be great to see my friends I haven't seen in ages as well.

The girls are put to bed but Ginny does not want to sleep. We can tell it's going to be one of those nights where Ginny's meds do nothing for her. James and I watch a movie on the sofa, I recharge with a powerade which I only use after a bad bout of sickness and James has a couple of beers. wehn our movie finishes we go up for a read and can hear that Ginny still has no plans on sleeping...Mels ends up in our roon again and Ginny doesn't sleep a wink through the night.

2012 asd log: entry 8

April 8th, 2012

Easter Sunday.











The girls are up bright and early on Easter Sunday with the similar jitters to the ones they get at Christmas. Melody loved searching for eggs and Ginny loved eating them. I'm very sore today from the day out and lifting Melody more than I should have yesterday but she was very under the weather. Today after we watch some of the Easter specials we'll paint eggs, make chocolate nests and watch Hop while our roast cooks for tea.


Melody liked painting our boiled eggs and Ginny liked having a couple. Neither child was very interested in melting the chocolate for our nests but they both found sitting the eggs onto the nests entertaining, theyre eyes were huge and focused. Neither were very impressed with having o put them into the fridge to settle but they enjoyed having one each after lunch. Melody likes getting dressed up with her sister and has been telling me how beautiful they both look today. Not that she's conceited or anything ;)




The girls zonked out watching Hop while I got out roast into the oven to to slow cook for a few hours and Melody kept saying "silly bunny" while Ginny just giggled away. It entertained them far more than I wouldve imagined for a film that's not completely animated. Melody is still not very well but her fevers have been manageable. Ginny has been enjoying her new fabrics plenty. Everytime I tidy them up because I think she's finished with them, I turn around and she's back in them.



Ginny skyped her dada matt and his parents before dinner. She ate brilliantly as usual and enjoyed two chocolate nests for dessert before bath and bedtime. Ginny went to sleep brilliantly but Melody was not feeling very well and woke periodically throughout the night. She ended up in our room but still struggled with sleep. I'm glad she enjoyed her Easter despite feeling so poorly. She told me I was the best mummy ever and that she loved painting eggs, eating chocolate nests and her egg hunt. It means so much more when Melody tells me things like this becasue I have never had Ginny be able to.

2012 asd log: entry 7

April 7th, 2012

I'm very tired this morning. Had trouble sleeping because the girls have jumbled up my sleep cycles in the last couple of weeks. Both girls sleep in past 8am on this Saturday morning which is rather unusual for them. Melody tells me they don't want milk w their cereal they want apple juice which Ginny seems to confirm pushing away the bottle of milk. Dry cereal, a cup of apple juice and bagels with cream cheese are what they munch on. When Ginny finishes hers she's after Melody's. Melody gets upset at first but then we discuss sharing and she tosses dry cereal to her sister saying "catch" brfoe getting out of her table and sitting next to her sister to share. Eating and sharing food is always a great way for them to interact.

Ginny doesnt accept much interation from peers but will make an acception if food is involved. When well the child can not be filled! Melody is still rather grumpy and it's grey out but I would like to get to the Saturday market in St Albans to get some fabric and bits and bobs for a sensory box for Ginny. I'll have to check the weather forcast before making a decision cause I don't want to end up soaked with two grumpy kids in the next city over.


I take the girls upstairs to get changed and ginny comes downstairs while I finish up Melody. When I come down I find her fingerpainting herself and the kitchen counters with buttery spread :/ It's going to be one of those days!! I get her cleaned up and we head out to the closest bus stop to start our journey...we miss our bus by a hair and have to wait a half hour for the next only to have a complete ass of a driver tell us we'll need to fold up our chair. Ginny can walk but for travel and long journeys she uses a mclaren elite, a special needs pushchair that qualifies as a wheelchair. I told him it was a wheelchair and the ignorant sod says " i still don't have room for it" this is though there are two signs clearly stating that the wheelchair bay should be given up for wheelchair users! Luckily the passengers weren't jerks, cleared the bay and told me not to worry about it.


Once we arrived to St Albans i still wanted to kick the drivers head in but gave him my very American "have a nice day" and jumped off with a smile. We started our search for sensory items for the sensory tent we want to make Ginny like the one she has at school and had loads of luck. Picked up various swatches of fabrics, and random items the school keeps in hers. All in all she seems very pleased and when we get home we'll see if there were any types I'll need to get more of if she favours them. Stopped at subway for lunch, Ginny had two bowls of meatballs, a packet of crisps and a chocolate chip cookie while Mels barely tried a bit of her cereal bar. She's been feeling very unwell today so we headed back home with our goodies.


Ginny was very pleased with her new bits and bobs and played with them as soon as we got in for ages. Buy of a lifetime I'm telling ya! It allowed me to put the laundry away in peace and the clean up afterwards was as easy as popping in all into a basket til we sort out a tent!! Melody has been floppy all afternoon, I think Ginny wanted to comfort her cause she went and sat with her when I put cars on to sort out dinner. It was very sweet. Melody still didnt eat so Ginny ate her dinner and than half of her sister's. She's the slightest child in the world but she could have finished Melody's dinner too, her pediatrician says she is such an active child that she needs the extra fuel to run. Her OT was worried that because of her sensory issues her body may not be registering that she's full when she is.


Daddy arrived as Ginny was finishing up her dinner and got the girls to bed after he had his own. I sat and had a lovely stress out over everything under the sun. There's always soooo much to worry about and it seems to pile up until it's unbearable. We still haven't sorted a house and the estate agent hasnt heard from the landlord on the last property we put an offer on in over a week. It all seemed like it would go smoothly at first like it always does but then something happens. This time that something was meetings with an architect because the adjustments on the landlord's new build may not be ready on time so the landlord is unsure of when he'll be able to move in...It doesn't help that in two weeks I'll have all my documents handed over to the UKBA and won't see them until they finished.

I was hoping to just pay extra and have it all sorted in person but you can't make an appt with an enquiry office until you've passed your citizenship exam, and as soon as I did that I tried to book one and they were completely booked up at all 7 of the enquiry offices scattered across the UK from then until weeks after my visa expired!! We seriously would've made a trip anywhere but no joy. Just our luck. we're having it checked at a checking service so still payig a bit more but it doesn't in anyway speed up the process. It just gives you the piece of mind that you've sent off everything needed. Something like 90% of applications are processed within 6months. It could always be much sooner but being practical you should imagine 6 months of being without papers.

As if I needed any more stress. Without papers I won't be able to sort out a property and the littlest lady is due in 3months. To say the least I'd like to just crawl into a hole and dissapear. Don't have that option once you have kids though, you have to appear strong. You have to get up every morning and make sure they feel safe, happy and cared for. You've got to be able to smile in the morning like you weren't crying the night before. Some days this is so much harder to do than others and I've got that feeling that tomorrow will be one of those days. Easter Sunday. That means tonight I've got to tidy up the entire house and set up the girls hunt for the morning. In the morning that means waking up early and helping the girls with their search for eggs and later on that means making chocolate nests, decorating eggs and slow cooking our easter tea. It will be fun, for the kids I hope at least, and they girls will look lovely in their Easter dresses.

2012 asd log: entry 6

April 6th, 2012

Melody was up most of the night complaining about having a sore belly still. We probably didn't hear Ginny waking because Melody had us exhausted but Ginny also must have got up very quietly. Melody heard her crying in their room and went up to see "why Ginny cry mummy" while I was taking clothes off the airer for the airing cupboard. Ginny came downstairs this Friday morning with no pj trousers or a nappy on. She must have taken them both off and thrown them off her bunk. She had been crying because she wet herself and was woken by the fact.

I cleaned her up and peeled off all her bedding and protective covers off her matress and put them to wash. When I came back out of the garage Ginny had found the butcher's bacon and was sat on the floor of the kitchen with it. I had forgotten we had any but ginny obviously knows it's much nicer than the regular bacon from the shops and she also obviously wanted her favourite breakfast food, bacon and eggs. "Lets dance" came on nick jr while I was finishing up feeding Ginny her bacon and eggs and Melody insited that I get the girls' "famango"(flamnco, lol) dresses from their holiday in Spain last year to wear so they could dance. I paused the tv and once Ginny had eaten her last bite I went up and got their dresses.


Ginny isn't really fussed by things like dressing up to match something so it's nice that she has her little sister around to encourage her to take part in these types of imaginitive play. We hear that at school she enjoys dressing up and it's probably all thanks to Melody and her constant insistance that her sister takes part in her fun. It's nice to watch the girls dressed up prancing around the living room. We won't be able to go out anywhere until all of Ginny's bedding has been washed and hung up to dry and that will take a few hours as our machine is rather small and there are so many layers to Ginny's bed to keep her from tearing them all off when she's in a mood.

Before long Ginny is ready for a snack and and tells me the only way she knows how, scaring the crap out of me by climbing up into her high chair and balancing uptop. It still nearly gives me a heart attack everytime come from one room to another and find her like this even though I know she has amazing balance and she's been doing this type of thing her entire life. Ginny was 8months old the first time I found her sat in the top shelf of a bookcase. It is lovely and sunny out but minus zero so hopefullythe day will have warmed up by the time the laundry is all hung up to dry and we're good to go.


After her snack Ginny enjoys playing with my hotwater bottle. Melody is definately unwell and has now wrapped herself in a blanket and is saying "I'm poorly mummy" :/ I feel like the kids just can not catch a break but I imagine all mums feel this way. If it's not one it's the other. One gets better and the next comes out in something. The weather does not help. It's 20degrees and then -1, not cool. By the time lunch rolls around Melody is completely refusing food so Ginny eats both their pizzas. If Ginny is well you can count on her to eat everything that's put in front of her. Melody is always stubborn.

I went to the loo for a wee after taking Ginny's plate and utensils to the dishwasher and came back into the room to find it a complete mess. I can tell Melody is properly unwell when she doesnt holler "mummy look what Ginny doing" she's a very bossy and my little helper so her indifference is a clear sign. Poor little lady. I suppose I'll let them stay in and watch Jake's all aboard easterrrr instead of dragging them out for a walk. I've now got the living room to retidy anyways. It can never be cleaned up as fast as Ginny can destroy it that's for sure!


Ginny came upstairs with me to put away clothing from the airing cupboard as I didn't want to come back to another Ginnyhurricane. We watched a couple of stories on Ginny's storio on the sofa and than watched Dora's pirate adventure, one of Ginny's favorites on tv. I ran upstairs to start the tub just before the video finished then bribed the girls upstairs with a sweetie each. Normally bathtime comes after dinner but I'm babysitting for a friend this evening bath then dinner it will be. Both Girls love bubbles so our bath probably had more bubbles in it than water but the little ladies came out squeaky clean and content. I dressed them for bed and plated their hair as usual. Daddy got home just as we were about to come down.


Ginny had spinach and ricotta canalloni for tea and Melody didn't eat a bite of her own and James and I shared a pizza. I was dropped off at a friend's and the girls were good from what I heard for daddy. I got in from a well deserved night out and everyone was fast asleep in their own beds. Both Girls slept through the night on Good Friday.

2012 asd log: entry 5

April 5th, 2012

Ginny has slept brilliantly but Melody must be coming down with something, she's been waking wingeing alll night so we've slept horribly. It's horrible and grey out today so we're going to take the girls out to toys r us for a run around. The girls had a bowl of cereal and pancakes for breakfast which always makes them happy. I washed another load of washing, put the clothes off the airer into the airing cupboard, put away the dishes and reloaded the dishwaher while James watched the girls downstairs. Ginny came up to get dressed and ready first.

She's always a bit weary of early morning changes, we imagine that getting out of your nice warm pjs into cool clothes freaks her out a bit but of course we have no idea of knowing for sure. The earlier the dressing, the more upset she is by it so school days are the most difficult, she will kick and scream and throw herself about to try to stop you from dressing her. Today was not as early on in the morning so a milder reaction but she was still pretty upset. Afterwards Melody who was still a bit cranky was dressed with the bribery of heading to the toy store and we went and sat in the car to wait for daddy.

Once shoes and coats are on Ginny can not wait inside for too long. It massively stresses her out because shoes and coat on surely mean it's time to go. The longer you take, the more stressful the situation so I try to get her out of the house as soon as. On school days Ginny will also get massively stressed if her taxi arrives late to take her to school. Time and changes can be very difficult for people affected by Ginny's condition. Once in the car Ginny is happy as she knows she will be going somewhere soon.

On the drive Ginny gets her arm out of her seat belt, I say her name and give her a look and she salides it back in because she knows she shouldn't do that but doesn't understand why not. Like most of what mommy insists upon it all just seems like an annoyance. She gets excited as we get near because she recognizes the lot and knows where we are going. Unfortunately after just walking around for a short while Ginny begins to scream, strop and throw herself around so I have to put her in the shopping cart. She is super worked up and goes on like this for about 15-20 minutes before she spots what she wants popping out of my bag and reaches for it.


On this Thursday poor little Ginny was thirsty but did not have a way of telling us until she could reach for her cup to let us know. After her drink she was right as rain. She liked looking a a dora bedtime dolly, the water/sandpits, wendy houses and slides. Melody loved the Disney Princess isle, dress up section and baby dolls. Both girls really enjoyed sitting and playing in all the display cars. Toys r us is great because the kids can be entertained there for ages. Of all the toys, books, etc Ginny chose a large bag of sweets while melody chose a small snow white figurine to play along in the cinderella set she got for Christmas.



When we got home I put lunch on and got to putting away the clothes from the airing cupboard, hung the washing on the airer, then plated up the girls lunch. James was feeling a bit under the weather so after watching the girls for me and having his lunch he went up to bed for a rest. Melody and I did puzzles and Ginny played with her tangle, then we watched some curious george before checking up on daddy and getting our boots and coats back on to go to the grocery store and get a couple of things we needed.

By the time we got back from doing our shopping it was time to make dinner. Ginny ate very well but Melody is definitely not very well and does not want to eat a thing. Today daddy gets the girls off to bed and I wonder who daddy is, surely he is not my husband, anyway this allows me to get the kitchen tidied and start up the dishwasher. We watch a movie together before heading up to do some reading but throughout our movie we hear Melody waking and crying so we know we're in for a difficult night. Melody ends up in our bed as we don't want her to wake her sister in the night.

2012 asd log: entry 4

April 4th, 2012

James has actually been brilliant this morning and I’ll give praise where praise is due. Though, he may not have been thrilled with my deciding he would be getting up with the girlies for his two days off as I'll have them all of next week with no break, he still got up and let me be this morning. By let me be I mean I’ve managed to lay in bed whilst he shouts up a million times asking what to do and where things are all though these things haven’t changed since the last time I made it clear I needed a break. I was up this morning feeling achy but being able to just lay around a couple of extra hours even if I wasnt sleeping was great. I popped into a nice bath and Ginny joined me half way through after her breakfast. Ginny loves to splash and play with bubbles but did not want to stay in as long as she normally does today.



She was quite grumpy whilst being dressed as well and as it turns out her two bowls of cereal hadn't hit the spot so we went downstairs and while I made her some bacon and pancakes she mucnched on a few digestives and some juice. James fed Ginny and I made some sandwiches to pack up for our lunch with some yoghurts and crisps. By the time we were all ready to leave the house it was early afternoon so we decided tohead to Woodside Animal Farm.


Ginny liked playing on the swings while Melody fed the chickens at the start of our trip. She wasn't very interested by the llamas or donkeys but giggled at the squirrell monkeys. Both girls loved the electric tractors and played along the track with daddy. Ginny was very upset to have to leave the track but enjoyed sitting on the old big tractors with daddy and Melody. We went to have a look at some more animals and by the time we reached the ringed tail lemurs Ginny was refusing to walk. There's nothing wrong with Ginny's legs, she was just being difficult, she jumped out of the pushchair once she laid her eyes on the bouncy castle and had a good jump around for a half hour before moving on to the trampolines.


We met Harvey the Bunny who gave the girls some Easter sweets and Melody had her face painted. Next we went to meet some baby goats that were just an hour old before taking a rest in the softplay area and having our sandwiches. Ginny is brilliant at exploring play areas and ate happily when ready. We saved our tractor ride for last which took us around the farm one last time. The girls always enjoy this part of our trip, afterwards we went into the petshop and farmstore and then headed home. With two hours to bedtime we decided to watch some tv and then have our tea.


Ginny has a bit of an upset belly but this is quite normal. Many children/adults on the spectrum have gut problems and if Ginny is not constipated then she has loose bowels. This evening she's a bit grumpy about it but not too distressed. Now it's time for bedtime so James is getting the girls to bed so I have to tidy up the downstairs, sort the dishes and vaccum. The girls should go to bed easily as they've had a long and active day out. This Wednesday was a pretty good day, when we've finished our chores I'll probably just have some paracetamol, a hot waterbottle and curl up with a book while James plays some call of duty, his favourite way to pass his evenings if he’s home and not at the pub.

2012 asd log: entry 3

April 3rd, 2012

Tuesday morning and the girls are back to their early wake up calls. Morning comes and it's breakfast, vaccuming, putting away laundry, dishes and a change of clothes. Neither of the girls have fevers today but they are both tantruming about this that and the other. Melody is a strong willed child and having an autistic sister doesn't make it any easier to show her the way big girls are meant to behave. It's not yet 11 and I know today is going to be a challenging day. When you're pregnant, recently out of hospital having chosen to go home and be with your kids, warned to take things easy and not do any heavy lifting it's not exactly easy to listen to the doctor's orders with a 3 and 5yr old throwing themselves about.

Just trying to will Ginny off of the counter she's stood on rumaging through the snack cupboard is probably more than I should do, just as lifting mels off the doorway to close the door and adjust the safety latch to contain Ginny probably is. Melody settles first and I set her up with some colouring pages and markers, Ginny has to come upstairs with me while I tidy up the rooms to ensure she doesn't damage her sister's art supplies. She enjoys jumping on the beds while and after I make them just like any other child a giggles as she undoes the work I've done.

Both girls join me in the kitchen to make our sandwiches for lunch. They have different tastes so I make what they like accordingly and we go eat our lunch together. I missed a marker when I put away Melody's art supplies and Ginny chews it to a pulp whilst I refill their drinks. My fault, I should've been more careful. After lunch I hope we'll get out into the garden as taking the girls for a walk on my own is not a good idea when they're in a mood and could throw themselves about at any minute. Normally I'd just deal with it but I've got baby to think of I'm far too early in my pregnancy to have to go back to the hospital. They might not give me the option to go back home if I do have any further complications and who would look after the girls if that happened?

Unfortunately it's cold out today and the girls are not keen on the garden. Can't say I blame them, with the heat on I hadnt realized the chill and it must have come as a shock after the lovely week of weather we've had. We play getting wrapped up in our easter blanket w our stuffed rabbit and chick toys and both girls giggle. Melody says" silly mummy you too big" and Ginny grabs my face smiling. This will probably be the best part of my day and as usual it couldn't last long enough. We roll around some more and play "tickle" and I blow rasberries on their bellies and necks then I pretend to eat the girls' toes and they smile away as if it's the best fun they've ever had.

Once I've tired I can tell they want a snack so snack time it is and then some more vacumming. Melody really wanted to watch Tinkerbell while I made dinner so that's what we put on. Ginny wanted to play in her room so I let her go up there with her room door open. James came home and as I plated dinner I hear "CANEY GINNY'S TREASHED THE ROOM", toys and books were everywhere, the beds were undone and even the coverings had been pulled off of the nursing chair I sit in to read their bedtime stories. So much for tidying, it's so much worse than before I had.

After dinner Ginny ran back upstairs and decided she would like to eat the wooden rings from her curtain as dessert. When James brought her down and closed her bedroom door we entered world war three. She screamed the house down as if we were the worst parents in the universe but after sorting for bed she went down surprisingly easily. Both girls happily listened to daddy's bedtime story and song and went to sleep.

Tomorrow and Thursday are James' days off so we will make the most of them. Next week James will be using his days off to fly for a charter line in Europe so I'll be on my own. I have brilliant friends though and we've made plans and travel arrangements so I can still take the girls out somewhere special on their Wednesday Thursday.

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.

Last night James was home so we did bedtime together because he had some work to get done and I wasn’t going to argue with that. 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. Maybe things wouldn’t be so difficult. Maybe they just wouldn’t be.

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.