Today is Autism Awareness Day. Today I am thankful for my gorgeous pair of Spectrum Sisters. Complete opposite ends of the scale, profound to high functioning, but inextricably tied. From day one the love and understanding between them has melted through the loss of a language to communicate in and they have shown the world that they will not fit into anyone’s generalised view. They brave, beautiful, compassionate, intelligent, inquisitive girls who will forever make me proud. The challenges have at times felt insurmountable, but what always pulled us through was love and spirit. They are amazing both because and in spite of their autism and how it presents in them.

Silence

Numerous individuals have asked me why I went silent suddenly and for so long. It was not for lack of want or will but because I had no choice. Legal proceedings surrounding my divorce and what I went through acquiring it bound me to a silence. There is still much I am not permissed to discuss though those who know me know that I have always been one to refuse quieting. However, in this instance, my children are worth more to me then exposing injustices of failing systems and sharing the details of our story over these last two years. I will say the little I believe can not be held against me. I am now happily divorced. I have moved 4 times thus far. I have been homeless. I’ve slept in a hostel a short while. I was not afraid to escape domestic abuse. My 2nd child who always had a unique bond with Ginny was diagnosed with high functioning autism/Aspergers just as I’d known she should have been, I think my 4th may also receive a similar diagnosis in future. I had a 5th baby girl, she was absolutely gorgeous, born in her 22nd week of gestation, after numerous hospital ‘mistakes’, I fell apart as I watched her die over an hour and a half because the NHS only requires oxygen to be given after the 24th week. A part of me died with her that I will never recover. I am expectant again but can not find joy in this pregnancy as I am still grieving the loss of my youngest. Her name was Erin Love and she will forever be irreplaceable. I didn’t plan to be pregnant again, and was not in any state for this to acceptably happen considering the grief I was overwhelmed with. My other girls are gorgeous as ever. I can not believe how much Ginny has progressed at her new school and I am so proud of her though terrified of the changes soon to come. Melody’s diagnosis was an incredible relief as she can now receive the best support for her at school. For now I believe this is all I am allowed to mention but there is a chance that even writing this can cause me further aggrievance as writing on my own personal Facebook page and comments mentioned whilst being stalked have been used against me. I have made many mistakes under a considerable amount of stress and can only pray that one day it will be easy to sift through the fog I, at times, feel lost in. It is rather apparent to me now that unless you are happy with the way the system in the United Kingdom works you are willing to comply in silence and allow wrongdoers to remain unnamed. 

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.