Big Thanks!!

Just wanted to say thanks to everyone who wished me well and/or made a donation for a charity trek. Feeling knackered but I had the worlds best welcoming committee at Durdle Door!

https://www.justgiving.com/Ginnybeanasd/

How it goes

Nothing to fear when the dynamic duo are here to keep Ginny safe!! I love my girls. There is absolutely no doubt that they are amazing and after often hearing me call Ginny's autism our elephant and watching inside out, Melody has deemed that her and Isa will protect Ginny against the elephant in Ginny's head that makes her do things she shouldn't and does not let her speak or play with them!

I should be happy. This should make me happy. It sure does make me proud, and I look at them and smile, but happy? ...As much as everyone always tell me I do a great job with Ginny, every time something happens it's hard not to feel low. Then on days like today when her sisters do something as sweet and special as this I feel worse for feeling depressed despite their efforts.

Yesterday Ginny took urban climbing to new lengths and scaled our building. She noticed her little sister, 6,  had left her room open while I sorted laundry and abuelita plated dinner, and squeezed through their small top window, stretched to the neighbor's satellite and pulled herself over the drain pipe and on to the roof of our terraced houses where she proceeded to pace from one side of building to the next.

With the help of our lovely neighbors and the fire brigade who arrived 20minutes after I phoned them, though it felt like forever, Ginny was brought down safely. I felt no relief from this act. It didn't return the air to my lungs or drag my heart from my mouth and reset it in my chest. The empty pit in my stomach didn't heal over. It's still there now.  Thankful but not relieved. Her sister's small top window will now also have to remain locked at all times. A new mental list was immediately triggered, new measures that would have be taken always another step needed. How could I ever get ahead?

In less than a week Ginny will be 9. She's not asked for a thing, she's not invited friends for a party, chosen a theme or demanded her venue. She won't blow out her candles. It'll be just like any other day to her in our very confusing world.

I've spent weeks trying to decide where to take her on our day out. Theme Park? Pool? Show? Beach? Snowzone?... She'd probably prefer to stay in her room on her iPad all day for a change but I can't bare the thought. Am I selfish? Am I wrong for trying to subject her to my own concept of special? Three days after Ginny's birthday it will be my own and it feels like it will likely be the same, forgotten by everyone but me. 

James is away and will be away for the next couple of weeks. After a lovely holiday in Cornwall, which J managed to join a couple of days of, everything just seems a bit pants if I'm honest and I can't make it better. I don't know how. Two weeks of school holidays left and while I'm actually not looking forward to the girls going back I know it's just what Ginny needs. I know the relief it will bring her and I wonder if it will do the same for me. I wonder if I'll finally be able to breath afterwards but don't get my hopes up. I can't remember the last time I managed to breath easy at home, it seems to be limited to time away and wonder how I could replicate it. I wonder if James feels it when he's abroad for work. I miss him, or maybe I miss feeling like I’m not a single parent with a mammoth undertaking. I know I am dreadful to live with, he tells me it often enough, so I don't know how he manages it when his expectations on how the how should be kept, and how much I weigh, look, dress or act always falls short. The stress just builds and builds while he is gone and by the time he gets home it's like that's all that's left of me. Like I no longer exist.

It would be wrong of me to say this we're all a cause to our elephant named autism. I've lived with my own named depression for far longer it's just easier to treat but on days like to say I can't quiet it. I just go round and round in my head and I feel my ears burn. I feel my eyes ache and my chest tighten. I go on about the day like any other but it feels like a lie. Like these beautiful, kind and thoughtful children couldn't be my own, like we're not the ones who rent this lovely terraced property in my favorite town, like the gorgeous preemie fighter that smiles up from her cot at me has been imagined. 

I hate these days. Days where the sun shines and I have everything to be happy for but the happiness is just not there. Days when I'm empty. They say people with depression are more likely to have a child on the spectrum and on days like today I'm sure it's my fault. I'm sure that if she'd been born to anyone else she wouldn't be subjected to her condition. I'm sure that along the way I did something wrong bringing her up and made that condition worse. 

On days like today I shouldn't write. I could go on and on and on, and end up no where as the rounds in my head overlap on repeat and I can't add any uplifting lilt. I go through the motions of normalcy for my kids, make all the right gestures and say just what they expect but it's not me and wonder if it's the same but reversed for Ginny. If while I send out all the right signals for the benefit of others she sends out the wrong, most likely not specifically for others but just because that's how it goes. How it goes. Each of us our separate program portraying the person we are seen as while it's possible no one may never know the person we really are.

Shaken

I dashed off from rainbows with Melody in tow, rushed through the front door, past the police without so much as a greeting and held her. She shrugged me off looking annoyed. She was playing on her iPad and clearly I'd disrupted her. I was trying my best not to cry in front of the children but I could feel my chin quiver. If I'd not been sat next to Ginny I'm sure my knees would have buckled there and then. My heart was still pounding out of my chest and I had to remind myself to breathe before I'd pass out. She wasn't a teenager feigning indifference. She genuinely had no idea how upset I was. She likely had no idea why I would be upset at all.

I swapped out the prescriptive shades I still had on for my normal glasses, took a deep breath, a hand still on her impossibly skinny knee and tried to smile. I tried to smile but I'm sure I failed and I looked up at the two officers and finally spoke. I asked them to please tell me everything. How long was she gone? Where was she found? Is there seriously no way local shops could hold on to my details in case anything like this ever happened again? Again? I stopped and thought, when had the picnic been? Less than a week ago? She's getting more daring. Getting more daring or my mom really doesn't get the extent of just how vigilant she has to be with Ginny.

I can't look at my mom. I fear that if I do I will grab her, in front of the police, and choke her. She tried to say that Ginny must have got into our new neighbours garden and that our new neighbour must have let her out. I don't understand how she can flippantly try to pass the blame but I suppose that makes it easier. I let out sound, not quite a laugh, not a sigh. I say that Ginny is more than capable of scaling the tall back fence, that she's even managed the anticlimbing specialist fencing at school in the past. I say, look out side, she could use and corner any grip, pull herself onto the wendy house, stand on the gate handle... I regain my focus. There is no point in listing off all the things I see that can facilitate her escape. I know them like the back of my hand. The things I see wherever I go that no one else seems to. The things Ginny can and will notice, the vantage points.

I ask what she was doing on the garden on her own anyway and my mom tells me shed left the small window in the living room open because of the heat which makes sense, both because it was hot and that's the window I'd have opened and because Ginny can easily pop through it, what doesn't make sense is why she was able to get to it. I ask where my mother was and she says making the girls dinner and that Ginny was in her room on her iPad. A touch of the tightening on my chest released. I immediately identified all the errors, errors made by someone that doesn't know what Ginnys like.

First, though she had an excellent reason for being in the kitchen she'd left the small window in the living room open. That, in itself, was not the main issue, the issue was that she left the window open and didn't not take Ginny into the kitchen and sit her at its table. Alternatively if Ginny desperately wanted the solace of her room than either the window should have been locked or the catch over Ginnys door should have been slid over. I don't like the idea of Ginny being locked into her room while she's awake. This why we have catches on all of the inner doors so that all bedrooms and bathrooms that are not being occupied can be locked instead, denying her access to places she shouldn't be unaccompanied and giving her the freedom to come and go to and from her room, but this would have been an appropriate exception. It was hot and 15-30mins locked in her room while mom made her dinner would have been acceptable by my standards. A further alternative would have been to take Ginny's bedroom fan and place it in the living room with the window locked.

I do not know if any of these options had crossed my moms mind at the time. If she'd shrugged them off and considered them unnecessary precautions or if genuinely it just didn't occur to her that something like this could happen. Her voice sounds so calm as she continues talking, I no longer hear her,  suddenly want to throttle her again. How can she seem so calm? I then consider the fact that I collected Melody from Film club at 4:25 and then walked her to Rainbows where I'd volunteered as mom was over to help with the kids for the summer so that I could do such things. I have no idea what time it is now but rainbows finished at 5:45 and I have no idea when all this happened or how long Ginny was missing. I remember how the minutes felt like hours when she'd escaped the picnic and my chest tightens further. 

I squeeze Ginnys knee, bite my lips together and look up at the ceiling to keep my chin from quivering again. Isa and Melody are watching TV so the restrain is not entirely necessary but I can feel that if I allow myself this tiny gesture I may unravel entirely. I suddenly feel the weight of James being away and wish he were there next to me, his big frame gives this illusion of protection and assuages my anxiety with regards to her safety. If James were here everything would be okay. If James were here though this wouldn't have happened. At least that's what I think but it could have, he tells me later on the phone from Alicante that it could have. I don't know if it's true. It feels impossible because aren’t daddies meant to keep mummies and kiddies safe?

The policewoman asks questions and takes down details, has me sign something related to media as mom had of course given them permission to alert them and the policeman is full of reassurances. He can obviously tell how upset I am so he tries to make me feel better between answering my questions. They'd called in everyone from St Albans, so there were a lot of people looking for her. She was in just a nappy and climbing into and out of people's windows, but we live in probably the safest town in Hertfordshire. She was gone approximately 25minutes, but the helicopters were out looking for her. They'd had to check all of the rooms and cupboards as children had been found at home hiding after hours of searching, but that hadn't been the case here. She was found at the pub stealing meringues, she'd stayed local which was good. Oh, and of course, didn't I have such lovely children. Isa had apparently been most entertaining before we'd arrived and informed them that she wanted to be a knight which they both agreed was pretty awesome and Melody was calm and polite, obviously taking in the gravity of the situation. 

They took me into the kitchen for a word and I immediately thought oh my goodness the nappy delivery! The nappy delivery of three months supply had arrived and we'd been putting them away but the boxes hadn't been broken and put in the recycling and the dishes were in the sink and not the dishwasher! My horror must have been conveyed by my expression because the officer immediately said that they in no way thought that this was a case of neglect, that Isa and Melody were a credit to me and that Ginny was obviously quite an escape artist. I told them about the all the upset last summer about the catch on Ginny's door and they said they could not believe that social services have me grief about it because it was more than obviously needed. They asked if I was okay and if I was getting enough respite, as most people do they wondered out loud how I didn't receive more support.  An officer told me that when they left they wanted me to have at least a glass of wine, and that if anyone said anything to say the police said to. This genuinely made me laugh and I asked if I could have documented written proof and then I thanked them and they left.

I shut and locked the door, reflex as usual. Lent my head against its cool glass and took a deep breath. I didn't know if I could manage a drink, I felt sick. The girls were receiving badges when I received the Facebook call from my mom telling me what had happened, I'd felt like being sick on the spot, I'd restrained and was passed over to a police officer who'd told me to relax, that Ginny was safe and back home and that they would be waiting for me when I got back. I hung up and could feel my head whiz. A familiar face appeared, a friend had run over to tell me what had happened and is told her I'd just received the call. I couldn't smile as Melody was handed her bage. I couldn't join in for the rainbows song and had to step back. I grabbed Melody as soon as it was over, did not say goodbye to anyone and hurriedly explained what happened. She understood and rushed home hand in hand. She is such an amazing child. I realised now, head still on the glass, that it was her last session until the fall. I also realised I'd the officers' names had gone completely over my head. I felt guilty that for all their efforts and the work put into bringing my Ginny home I hadn't even had the decency to shake their hands and retain the knowledge of they names. I lifted my head from the glass, arranged my face a mask and walked back into the living room.

Ginny was still not interested in a hug from me and that hurt. I checked the time and decided to run the bath. It was bath night and I thought I'd get in with the girls. I ran it cool as the day was hot and washed us all. My mom got them all into jammies and I only managed 4pages of Harry Potter before I had to apologise and tell melody we would read at least a chapter tomorrow. She got a school book and told me she would read a bedtime story, angel that she is.

I walked downstairs with Amber and poured the wine that had been prescibed. It was cool and sparkling, the bath had lessened my nausea and I tried to remember if I'd had lunch. I couldn't remember but I also couldn't be asked to cook. I took a sip of my wine, refreshingly cool ad sparkling, and decided on delivery. Pizza or Chinese was the question, I was in the mood for pizza so  naturally I went for Chinese instead, overriding my craving. I sat back on the sofa watching Amber attempt to crawl and then watched eastenders, in shock by how the world just kept on while I still felt my insides shake. While I was still full of unanswered questions. While I wished our elephant would leave us so that I could meet Ginny. Meet my little girl trapped inside that little head, behind that gorgeous face, hidden. 

As it all crashed into me I felt a sudden rush of tiredness so Amber and I went up to bed. Amber was already asleep and I followed shortly after. Unfortunately I then proceeded to wal at 1:25am and am still now awake at 5:04. In the last hour I decided I needed to write and now I'm hoping that I'll manage an hour or two.

Please Vote for Woodfield School

I've included a letter from the deputy head at Ginny's School. If you have the time then please do vote! Many Thanks!! Xx Caney

Hello everyone,

WE NEED YOUR VOTE PLEASE

We are extremely pleased to announce that we have been shortlisted as one of Sainsburys' three charities of the year.

People can vote by Proxy at the front of the Sainbsurys Store, Apsley Mills, or by visiting  https://www.sainsburyslocalcharity.co.uk/#nominate

Enter our postcode HP3 8RL and select Apsley Mills.  You will be directed to the choices and we very much hope you will choose Woodfield Association School Partners (WASP) for your vote as we are actively fundraising for a new therapy pool.  Visit our websitewww.woodfield.herts.sch.uk for more details.

Voting period is from the 16^th to 28^th June 2015so please everyone, log-in and support Woodfield School.

Also, please feel free to pass this email on to anyone who you feel may wish to vote for us 

Kind regards

Beverley Hamilton

Deputy Head - Community Liaison

Woodfield School

Malmes Croft, Leverstock Green

Hemel Hempstead, Herts, HP3 8RL

 

Testing

Adverts, everywhere. Warning parents that along with their very expensive tablet computers and mobile phones they MUST BUY the top of the line, creme de la creme, cases to keep these devices safe. They list off special features and impressively state their products are "rugged","waterproof", "shatterproof", "shockproof", "secure", "submersible up to 5.8meters", "military tested", "extensively tested", and/or hilariously "childproof". Well, what about Autismproof? What about Ginnyproof? 

Sat in the coffee shop this morning I jokingly stated that my daughter could not only be used to test the security of schools but also to test iPad cases. We have probably spent more than the cost of her iPads(yes multiple as she drowned her waterproof iPad and we had to replace it) on cases that have claimed they could out smart children. Their designers have obviously not come across a child like mine. How dare they claim extensive testing when the extent of their testing clearly has not come close to the requirements to proof against my under 10. My under 10 who has been proving time and time again, since her 6th birthday in fact, that though she has severe learning delays, autism and adhd she can render their safety proofing equipment useless within minutes. Why are companies not seeking out our modern day houdinis to ensure their products are actually worthy of their claims?

Virginia may not conform to standardized testing procedures, rendering her results often to be not consistently reaching the 0-6month old markers in most categories, but that is because if an activity does not motivate her she sees no point in it. Ginny has amazing problem solving skills. Problem solving skills very much above the average though not conventionally. 

When parents were pleased about their little ones completing puzzles for the first time I was find places to hide keys so that Ginny could not get the front door open or climb out of the window. When parents  put things up on counters to remove objects from the reach of their infants/toddlers, I was finding my 8month old in the top shelf of a book case or that my 18 month old opened the dishwasher door so that she could pull herself on to the counter and lather herself in butter to satisfy her sensory seeking needs. If my neurotypical toddler completes a puzzle I would clap, if Ginny were to complete a puzzle my jaw would drop. If my toddler who was severely hearing impaired for more than the first two years of her life says a new word I cheer, if Ginny did I'd be singing praises for prayers answered.

My expectations for my children vary on their abilities, so why aren't these proofing devices catering for children of varied abilities? Why are the cases that are meant to withstand the roughest of children unable to last the placid but dedicated hands of my child? It's not just tablet cases that need to up the bar, my daughter's school purchased incredibly expensive anti climbing fencing for escape artists and one day they thought they'd see how well it would stand up to Ginny. They made sure she was safe and that if she managed to get up and over there was an adult to apprehend her. The anticlimb wall proved not to be Ginnyproof as most things are. Surely "specialist" equipment would undergo more tedious testing then the usual but still it would seem its insufficient.

If everything were actually tested to be worthy of their titles, if preventive measures were made suitable to those who need them most then buying childproofed items would actually mean that children can not get past their safety mechanisms. Child locks on car doors, for example, are in fact Ginnyproof. Ginny can not open a child locked back door though she can climb over all seats and open a front door but that is not something that woul happen while we are driving around. Though, I would not put it past her that if the motivation were there to do so. As I said earlier, Every task depends on how motivated she is. Would she leave a clipped sided Tupperware box untouched on the table top no matter how many times you asked her to open it? Yes, but if you put an iPhone in that Tupperware box she'd have it out faster than you could blink. I wanted even imagine how I myself would be able to manage something that is truly Ginnyproof but certainly there must be someone cleverer than I who can.

Through

When we first viewed this property, pulling into the parking bays, we saw loads of children playing on the large green in the culdesac. Smiling faces, bikes on their sides and a mum who'd come out with a pitcher of squash, cups and biscuits for the masses. I'd not stepped into the terraced house and already I knew I wanted to live here. As we shook hands with the estate agent just outside of the property, I was already planning on purchasing a storage bench we could put at the front so that we could watch the girls play on that green, while James and I shared a bottle of wine in the sunshine. I was sold.

Of course by the time papers were signed and we'd moved in, summer was nearly over and James was still living away at least 5days a week for work. If he was home for a couple of days biweekly that was pretty good. Most of the time it was just the four of us girls, Isa, Mels, Gin and Me. Ginny who I worried the most about, with regards to the move, was not as shaken up by this move as she'd been with others in the past. Being able to step out of our back gate and cross the road to the common must have been a dream for her.

We could walk to duck ponds she so loved in just a few minutes and drive to nanny and grandad's house in under 5. It took us less than 15 to walk to the town centre and Melody would be able to scoot to school in September, the same school her dad went to when he was her age.

It was a dream for me too. I lived so much closer to my friends and James and I would walk past the church we were married in, hand in hand, every time we went for a drink at our local. My girls would have happy summers outdoors in the sun while I cooked dinner and would watch them from the large window facing the green. We'd barbecue while the girls paddled in the garden and then ate at their mini picnic table wrapped in towels while we'd dine on the patio one. If only I never had to wake up. If only I could live in that dream.

Dreams are funny things. The other night Ginny spoke to me. Excitement shone through her face as she managed the words she'd desperately wanted to get out for years. We were on our back patio after a barbecue. She smiled, we all did, Melody hugged her and she kept on, saying a word and looking around to make sure it was hers. I could feel my heart swell with joy when I suddenly heard a scream. The scream was out of place, it didn't fit our joyous surroundings and it wasn't welcome, but there it was again. That's when I realised it wasn't real, that's when I remembered putting the girls to bed and rolling into my own without managing to read a page of my book out of exhaustion. The swell in my heart turned into an ache and I opened my eyes. 

The scream was now an audible cry, "maamaaaa" but it wasn't Ginny's. Isa had rolled out of bed and was sat on the floor with her arm stretched towards me as I entered to room she now shared with Melody. I scooped her up and shushed her. I rocked her and kissed her forehead, then I placed her back into her bunk, put her doll 'peepo' back into her arms, and tucked them both up. I stroked her hair and sat on the edge of her bed, stooped over because of the bunk. I know I shouldn't because of my spinal injury but I want her to feel safe, to know I am here. 

The cadence of her breath lulls and I know she has gone back off to dreamland. I kiss her forehead. I thank god that her grommet insertion was successful and that she is making excellent progress with her speech now that she can hear. I wish it could have been that easy for Ginny and immediately I feel guilty for taking hearing impairment lightly. I remember the struggle to get Isa's surgery put through and the frustration she felt for not being understood. Her frustration was just as real as Ginny's, we were just lucky it was temporary. I try to sneak off the bed in a semi ninja stance and when I see Isa did not wake from the bed's creek, I step on the child sized chair at the bedside, lower Melody's blanket and kiss her forehead too. How she can sleep the way she does, I will never understand. Not even in the deepest of winter could I imagine disappearing under my duvet without the feeling of asphyxiation creeping over me. I shudder. I replace her blanket, step off the chair carefully and step out of their room.

I stare at Ginny's door. The house is silent which is rare to say the least. I want to have a look at Ginny, to feel her hair, brush her cheek, but do I risk it? The chance of sliding her safety lock to open waking her when it's possible that if it doesn't she'll be facing the wall and far from my reach up in her loft-bed? I Reason with myself saying that Ginny has slept very well this week and that Amber is sound asleep so I could always lay with her a while to settle her if she did stir, and I slide the latch and wait. Nothing.

I slowly open the door and tiptoe in, towards the head side of her bed and stand on her child sized chair. She is facing out and suddenly it is worth the risk of waking her because her little hand is near the edge and I can hold it. It is warm, as always, and I feel my heart warm before the ache returns. I stare into her beautiful face and know that she may never speak. My dream was just that. She is eight, nearly nine, and I know that the chances of her developing speech after 8yrs drop drastically. I feel a tear roll down my face and I squeeze her hand slightly. I kiss two fingers on my other hand and gently place them to her lips before taking a deep breath, letting go of her hand and tiptoeing back out of her room.

I pull the door shut, slid the catch and lean against the door for another moment as I feel my chest begin to tremble. I reach my room in a few quick strides, grab a pillow and cry. I grieve. I grieve for Ginny. I grieve for her sisters. I grieve for myself and for James. I think of the way Melody asked if Santa could bring Ginny a new voice box for Christmas and of how she often prays for Ginny to be able to play with her and Isa. The way she pretends to be Ginny's voice when she asks for things she thinks Ginny might like. It makes my grief worse. They say you finally get grieve once you receive a diagnosis but it's only one of the many times you will.

I feel my chest heave and I know I have to calm myself so that I don't wake my mom downstairs, visiting for the summer to help with the girls. I hear Amber beginning to stir and know I must not be doing a very good job, or maybe I am and it's just time for a feed. I'm reminded of how I never really know if I'm doing that, a good job. I lift my head, take a deep breath, blow my nose, wipe my face and look at Amber. 

She's kicked off her covers and is smiling at me. I can't help but smile back. She is so beautiful, but what's more, she is such a miracle. I had such a dreadful pregnancy last year and there were many things that could have led to her not being with us today. In the end she was only two months premature but breathing independently from birth. She was so small, is so small, even though she's more than three times the baby she was born. 

Her hearing tests were clear but what if? What if it happens to her? What if she continues to develop normally and then one day she stops? She stops and she regresses? I don't know if my heart could bare it. Melody has shown many signs of being on the spectrum but if anything she is hyperverbal, through her I see the traits in myself that make me wonder if my genetic make up makes me the one to blame for the elephant taking hold of Ginny. I try to shake the thought, the feeling of unease our elephant brings with him when he creeps up and takes over. I reach a hand out to Amber and she grabs my thumb. She babbles, kicks her feet and smiles even bigger than before and I just have to hug her. I lift her up and kiss both her cheeks, her little hand still clutching my thumb and I somehow manage to feel blessed. I want to squeeze her but I don't want to hurt her so I kiss the top of her head, rearrange the pillows on my bed and nurse her.

Her eyes smile as she feeds. I know I am lucky to be able to nurse her, that not everyone manages while others do not wish to. It's worth the hunger and the exhaustion, to know that even though my body turns on me during pregnancy, it allows me to provide my children nourishment. After she finishes I continue to hold her close. I feel her chest rise and fall, I smell her skin, I hear her breathing. My love for this child, as for my others, has no bounds. I know I would do anything for her. I rearrange the pillows, lie back and drift off to sleep.

In the morning the sky is grey, the air smells of rain and my joints ache but I am thankful. When the sun is out all the children rush out to play on the green. They ride their bikes, make up games and laugh carelessly as children do. Many of them look around Ginny size/age or younger and it hurts to watch them. The joy the sight of them brought me to at the start now pulls at my heart. They do all these things Ginny may never do. They play and make sure their younger siblings feel included. They have friends. When it rains I do not see them out. It makes it easier, if only slightly. 

I can not sit outside and watch Melody and Isa play unless Ginny is secured in a room with a camera and I can watch her on a screen next to me, or she is out with carers. Melody is younger than most of the children anyway but occasionally a couple of the kind, older girls, welcome her to play and say they will keep an eye on her. On those days I watch from the kitchen window and feel bad for wishing for rain. I watch Melody smile and jump about, and the girls put flowers in her hair and I still wish it could be Ginny picking the flowers and adorning her little sister's head. I wish it could be Ginny but I do not wish the other children away, I wish she could be their friends, that she could have friends, that they would knock at the door and call on her to play and that she would rush and ask me if its okay. I accept that it's just not the way it is and so I try to feel happy when they ask if Melody can play.

I often worry about whether because of Ginny's condition other parents won't/don't invite Melody over to play or us to join in on days out. I know it's silly but I can't help it. Especially when I hear/see that close friends have all gone to do something and we only hear/see that they have after the fact. I think I'd prefer it to be that they just didn't like me. School tells me that because Ginny's autism has such an impact on Melody it does affect her ability to make friends. That many times the other children may believe her to be a bully but I have seen her bullied and I've seen her innocently not understand what is going on and laugh at herself because she hasn't realised. She is a very emotional child and school has been great with trying to help steer her acceptably. I know that it's not Ginny that has made her emotional, that Ginny has made her compassionate and caring. That she's inherited my headstrong bossy nature. I wonder if I should tell the school she is emotional because it's in her DNA? Because of me? How can I explain how sure I am that they are wrong and that they just aren’t recognising she has her own very strong ASD traits that actually manifest completely differently from her sister’s? They don’t even know her sister, but can’t they see the traits in me?

Having a child like Ginny I have to especially watch what I say to everyone. I worry at all time the kind of things they'd feel necessary to pass on social services and am reminded of Ginny's case manager quoting James as saying that I am crazy and hormonal when pregnant when he flippantly said it was nice to have baby home and not have to deal with crazy pregnant hormones “jokingly”. The way they could take that remark as a reflection on me and not of him and the toxic masculinity he was bred amongst will never leave me. Some how things like this are documented and those documents become apart of my life so I have to watch everything. When I was unwell and not at all satisfied with the care that was being provided to Ginny, instead of looking to improve said care, agencies tried to say it was in fact my fault because of my attitude. Apparently reporting a list of failings on my daughter's care and telling carers what is and is not an appropriate way of dealing with Ginny is a poor reflection on me. 

Many people have asked I have not been writing and while I usually respond saying that there have been so many things going on in our lives that there just was enough time, that is only a part of the truth. A part of me fears that my honesty on reflection of what last summer was like for us while I was unwell could be another document to be filed away negatively. It often feels as if unless reflection on the system is positive then the system would prefer for it to remain buried or risk burial. I know that I am not alone in feeling this way. Unfortunately I know many others who feel the same.

In just a handful of days it will be a year since my spinal injury. The fact that I've experienced aches there all week is yet another reminder of the terrible summer we had as a family, yet also a reminder of how far we've come. A reminder of the fear I felt when the jolt of pain surged through me and I thought I had surely lost Amber, and of the fact that I hadn't. That we made it through with the help of friends and family, and that we've now had Amber with us for 7months. That now James is home more than he ever has been, thanks to his new job. That the girls are happier than they've ever been. That Ginny is now being medicated for ADHD and that it has made a massive difference to her ability to concentrate. That it's resulted her being on new language development target for the first time in years. That even though the likeliness of her developing speech has dropped, the possibility that another communication system may be successful has risen, but I often worry about the side affects. That we don't need carers at home like we did then because I'm not bed ridden. That we've made it through, that we're blessed.

Don't forget, you can help me promote awareness by sharing this blog and making a donation towards my charity trek through 

https://www.justgiving.com/Ginnybeanasd/

A big thank you to you all for your support with WAWW2015

Hi Caney, 

 

Thank you so much for sending your wonderful photos and inspiring blog to us! I shall forward your photos and blog to our World Autism Awareness Team at waaw@nas.org.uk so that they know how brilliantly you’ve done so far too!

 

I hope that the trek goes really well! I’m sure that all of your friends and family are extremely proud J

 

Thank you so much for the amazing work that you’re doing raising awareness and funds for The National Autistic Society, enabling us to provide information and support for more people and families living with autism.

 

Warmest wishes, 

 

Bryony 

https://hertslocal.wordpress.com/2015/04/03/hertfordshire-mum-does-her-part-to-build-awareness-for-world-autism-awareness-week/

https://www.justgiving.com/Ginnybeanasd/

Featured in mumsnetlocal, big thanks to Erin!!

If you have the time to read and share it would be greatly appreciated! 

Many thanks!! 

https://hertslocal.wordpress.com/2015/04/03/hertfordshire-mum-does-her-part-to-build-awareness-for-world-autism-awareness-week/

Stand Out For Autism! 2015

It's world autism awareness week so dig into your pockets and when you see a tin drop them in.

Donations from £2 can be made via my just giving page or you can contact me he national autistic society to make a donation directly to them.

Thanks for having a look!

Xx

https://www.justgiving.com/Ginnybeanasd/

MONDAY:

Have felt ridiculous all day but hey ho! Cheers to the lovely lady who pulled over her car just to give us a donation of his morning as we were walking into town :)

TUESDAY:

Toned it down a bit as I was meant to have a team around the family meeting that ended up being cancelled.

ONESIE WEDNESDAY:

So proud of Melody going to all the year one classes and talking about Autism. Wonderful to see so many kiddies dressed up to promote awareness and overwhelmed by the mums coffee morning turn out. Thank you all for being so amazing!! Today's buckets raised £98.37 and our raffle an additional £17 as our winner chose to donate her half!! 

THURSDAY:

As James missed Onesie Wednesday the girls and I didn't want him to feel left out so we made sure to have a onesie ready for him to wear for the Thursday school run! Doesn’t he look delighted? 😂

It was also the last day of term so I saw it off with a bang!

Unfortunately, clean up was quite a lot of work!