Thursday, 31 July 2014

Tick Tock, Two Days

As anyone who is an avid reader of Our Elephant Called Autism or a fan of its Facebook page can tell you my home for the last 4yrs has been a miniature Alcatraz. Due to the fact that besides being in the severe to profound range of the autistic spectrum Virginia is an incredibly physically capable child, locks for the front and back door were set at 2yrs of age while, windows locked by key from age 2.5yrs (when she first discovered how to manoeuvre push button window locks), locks on inner doors during the day(to keep her from her destructive tendencies) by 3yrs, and a lock on her bedroom door by age 4 for both her personal safety and that of the rest of the household during the night because of her complete lack of self preservation and understanding of danger. The generally accepted safety gates very soon became yet another death defying an acrobatic feat along with banisters, shelving units etc.

I can not remember exactly who the very first person to suggest the use of bedroom lock was, as there have been so many professionals in and out of our lives with Ginny, but it was during our time in Carlisle. Our lives since my daughter's regression have been full of incredibly difficult decisions on very extreme circumstances. From medicating for sleep (limited as it still may be) to deciding we had no other way to keep our child safe, to then finding an easily managed lock instead of the suggested deadbolt. 

The baby lock we decided on had to shipped from the United States as we couldn't find something both that Virginia could not reach/break or that took strength and/or concentration for an adult to access Virginia's room in an emergency here in the UK. This is the lock we settled on and have now used for years and have in fact replaced our other inner door locks with as it's success had yet to falter with Ginny's growth and below is a clip of how it works.

As you can see it is very easily handled as long as you can reach it and currently still causes enough resistance to deter our little Houdini from ransacking the other bedrooms, the bathroom and ladder in the day. As long as secured properly it also keeps Virginia easily accessible though not allowing her to release herself from the room without adult supervision which she requires constantly. Examples of antics that have gone on in a case where she was not safely stowed away as follows. 
Besides the lacking sense of danger Ginny is a climber and will eat anything edible or not from banisters to rocks so in order for us to sleep, though she may not, we have to make sure her access is limited.

Yesterday I however had quite the bomb dropped on our life by Virginia's social worker Nikki of the Apsley based Hertfordshire disabled children's team who apparently along with her colleagues had until recent days had 'no knowledge of the lock's existence' though it had definitely been shown to one of her predecessors Michelle P and has never been a hidden facet of our day to day that has been in use for many years. I in no way believe that she has any reason to speak untruthfully, my experience with various professionals has taught me that many times they are as unsuccessful at noting the important as they can be at reading through the details of a child's condition and the annotations of other professionals, thus leaving themselves in blissful ignorance but with an over worked system in which people our in and out of a position in the drop of the hat you almost begin to accept it.

Anyways the bomb drop was not the news of apparent ignorance to our night lock, Nikki had been in the evening before last to have a look at it once the 'news' of its existence reached her, it was that point blank her superiors stated it was unacceptable and that it "had to be removed". These superiors having never met Virginia or myself and having in no way any inkling of an idea what Ginny is in fact capable of or how little she conventionally understands blindly made this decision and to be frank, being 5months pregnant under high risk circumstances with a recent spinal injury I hormonally felt a surge of both rage and betrayl towards Nikki and my distress could not have been any more apparent. 

The callous way someone could deem our actions, which had been suggested by professionals prior, as inappropriate was infuriating and having Nikki ring to give us this news instead of defending our case was unforgivable. I suppose, however, that in the end these are all people who then go home to their lives free of having to double take their every action and possibly stay up watch some telly instead of passing out immediately after their disabled child in the hopes of receiving some/any hours sleep possible. People who often have very little interaction with the said children they are managing and in the end have their own arses(for lack of a better word) to cover when it comes to their world of black and white print and red tape.

In any event for all the desire to hide my human emotions from others and maintain my usual stoic character I was a blubbering, hyperventilating mess and my mother who had been downstairs with the children ran upstairs to see what was the matter and Virginia's behaviour which had been rather relaxed and happy clicked to disrupted and frustrated. Ginny has always been very sensitive to the moods of the house, another reason why I try to maintain the most stable moods possible with all things considered. Today though, because the stress of the entire situation gave me an incredibly pained and uncomfortable night, I spent most of the day resting and Virginia as I slept though on minimal sleep herself had been manageable. Almost as immediately as I began to return the days missed calls once I woke, though locked in my room(for both my personal safety and that our Ginny's unborn sister) and away from the eyes and ears of her and her sisters she began to be upset. She poo smeared atrociously and stimmed incessantly.

During yesterday's call, after I had become a temporarily emotional mess, Nikki immediately panicked and said she understood it couldn't be an immediate transition. I implored reconsideration of the matter and straight to fact stated that if social services could provide an over night carer to protect Ginny and all other members of the household from our Elephant throughout the night I would be more than happy to remove the lock but as she agreed that would in no way be manageable I could not understand the depth of negligible ignorance obvious of her department. A department that is meant to look after the children of our county instead of put their lives at risk with the endless risk factors that would arise from the little action of removing a sliding latch. 

She then told me I shouldn't be upsetting myself so which news flash I was not doing but she was, and informed me she and her supervisor would be coming to out see me and discuss the matter at 4pm. I stated that I would receive them on my front bench as I would not want my children disturbed by any emotional outbursts their presence and blind ignorance may cause me. Due to traffic Nikki and her colleague Tabby arrived at 10 to 5, though it had been suggested that they were possibly attempting to avoid the presence of the carer and community manager of the care agency we use once calmed I could clearly conclude the tardiness to likely be due to classics on the common taking place.

Her supervisor, Tabby, seemed quite shocked at my the fact I honestly was planning on holding the meeting outdoors away from my children. Nikki more shocked at my recording the meeting for my personal reflection on all discussed yet as I said without it I did not agree to the conversation. My spinal injury and the medication prescribed to ease the extreme pains caused by it have unfortunately made both reading and writing incredibly difficult. That on top of the stress taking notes during the meeting would have been virtually impossible. This entry, as the others since my injury, has had to be written in stages with breaks to rest, recharge and continue. Today I received another lovely call about my unwillingness to cooperate though I had spent well over an hour discussing all of the matters at hand that would need addressing if said door lock was removed. 

To be honest if anyone has been unwilling to cooperate and work as a team to find an alternative it has been social services. I have said someone can come in to do a week's worth of overnight monitoring for risk assessment, I have mentioned the never ending list of risks posed by the potential lock's removal in detail, and that if a foolproof alternative could be put in place I would more than happily remove said lock. After all what kind of a parent would refer to such lengths unless they could see no other option? If a plausible option were there we would take it in a heartbeat. Most if not all suggestions on their part I have been able to find faults in, I am the lead professional when it comes to knowledge of all things Virginia Phoenix Peraza and to say the least I have been incredibly unimpressed with the fact they seem to have no suitable alternatives for a child like her. 

I can't bare to believe that they have not yet come across a case as hard as hers, a possibility they have no desire to state if indeed the case as it would make the amount of usual respite I receive to be beyond shocking. As a parent the concept is unfathomable. Who would want to hear they're child is the end all of plausible safety risks? Who would want to hear that their child is the most difficult someone's seen by far? We already hear it from people, those who had no idea of the varied degrees of autistic spectrum disorders before reading my blog or meeting Ginny. We hear it from carers who can not believe that because Virginia and I are American despite living in my husbands hometown could not access help with respite until the last two years and that to start we only received 4hrs a week while children they minded far less debilitated by their conditions received multiples of that and in many cases 2-1care in all those stints. Yesterday I even heard it from Sharon, our community manager from Abbots Care but still social services we would not expect it from.

I know that for many when a child is to scale with Ginny are often sent away to boarding school or given to care but Virginia has a family that loves her very much.
 She has parents who through thick and thin have been there for each other at every hard decision and sisters so compassionate and understanding they must have been sent to me to give me strength and knowledge that there is good in the world and that one day when my husband and I are gone they will be there to look in on her and make sure their big sister is properly cared for.
For our family sending Ginny away is not an option. Until I can no longer physically and mentally manage Virginia I will not give her up. Above all in the raising of my children I have deemed to teach them the importance of family and being there for one another. 
Not having grown up the ideal happy family setting it has been the one thing I knew I wanted more than anything to give them. The one thing many people said wouldn't be possible because of the severity of Ginny's condition.

At the end of the long winded arranged visit from social services we were not much further along. At least a quarter to a third of the time was spent by Tabby discussing how we should really go inside because these were private matters, I stated that they in fact were not as the details of in ins and out of our family's struggles with our elephant are the essence of my blog which was created to open people up to the reality of the ways autism touches not only the child with the condition but all of their family and friends. I also reiterated that Virginia is very sensitive to the moods of the house and that I did not wish have them unnecessarily subjected to the stress the whole matter was bringing me, this did not seem to actually sink in and register as it was very obvious that it was not our family's privacy they were concerned for but for themselves, they actually reported back that it was an example of my lack of cooperation when I stick to the fact that it was cooperation at its best. Sheltering my children from the struggles and obstacles that are my own to manage and that as children they should not have to be subjected to. 

The remaining three fourths to two thirds of the encounter was spent repeating again the various ways in which removing the at this point infamous lock would pose a threat to both Virginia and herself. 
For example in risk of fire Ginnys room is the actual alternative upstairs exit and Virginia is known to run at/towards fire because she finds it interesting. Another would be the fact the bathroom would have to remain locked throughout the night to keep Virginia from consuming the vast amount of inedible things found in household bathrooms and then hinder the ease in which the potty trained and training children can access it themselves when they are in genuine need of its use. As for the children if there room then becomes accessible to Ginny in the night it would no longer be a safe place for their possessions or themselves because Virginia could accidentally injure her sisters. Then of course there's the fact that I would have to lock myself into my room(acceptable because I am an adult) because she could enter my room otherwise and harm me or her unborn sister by throwing herself upon us, or after she is born flip over her Moses basket or suffocate her. 

Lastly there is the area which no inner lock would help with of the stairwell. Virginia is notorious for her climbing abilities and lack of fear, if her room were not locked and an overnight carer were not there to monitor her overnight than there would be no stopping her from the infinite possibilities of injuries she could inflict drowsily climbing the banisters. She could dislocate, she could fracture, she could break or worst case scenario she could kill herself. When a child is deemed a danger to themselves they are locked into a secure ward for the night every night to insure their own safety on psychiatric wards. In that circumstance it is seen not only as acceptable but as necessary, yet when you have a child at home who is a danger not only to themselves but to others placing a baby-proofing latch on their door is not. 

As oh so many times before I am left dumbfounded by the misplaced judgment of 'the system' and it seems to me that the county of Hertfordshire should spend more time investigating genuine cases of home abuse hidden behind closed doors instead of the very open and obviously needed safety precautions needed behind the open ones. It is insulting and it shows a great amount of ignorance on their part from the various tiers involved.

Perhaps the most laughable possibility was the "can't your mom stay in her room as the over night carer" proposed by Tabby, Ha! My poor mom who is in her 60s, has a heart condition and high blood pressure, has already had her four kids and was over to help out from the states and who is off to visit her sister Sunday/Monday for the next two weeks. Of course that was the master solution! Pay thousands upon thousands in visa fees to have my mom spend the rest of her years sleepless as Virginia's overnight carer with no pay in what is already a very crammed 3/4bed terraced house. Never mind the fact we'd be bankrupting ourselves, forget her retirement, forget the fact she would be ineligible for NHS care, forget the fact that though I do love my mother very much there is not a chance I could stand living with her permanently. 

Tabby quite obviously had not bothered to even look into who actually lives in our household! She probably has no idea that aside from my mom going back to the states shortly with no plans to return that my husband lives away for work and is only home two days a week if that! She stated to me various times that "oh well, you see, seeing these things on paper is very different from hearing them directly" could you say anything worse to a writer? If I woke up mute tomorrow at least I would still have my ability to put things down on paper. Things that aren't any less real or important because they are written and not said. 

Could you think of anything worse to say to the mother of a nonverbal child who may never be able to use speech to communicate? I do not care how, if Virginia in the upcoming years develops a form of concrete communication by any means it would be of the upmost importance. Whether it be written, pictorial, signed or hell even telapathic, if she could in some way communicate to me my life would be complete! She would be able to let us know what is going on amongst the fog, she would be able to ask and not just cry. I pray for a miracle every day. A miracle not in form of a "cure" or infinite wealth but to have the strength to trudge on day in and day out in hopes that one day Ginny can communicate with us. That one day she doesn't have to feel alone in a room of people, unheard amongst the voices. 

I was not a religious person before our elephant shattered the idea of the life I could give my first born. I was christened and communed catholic in one go after my grandmother's diagnosis of breast cancer because she wished it. My biological father who had little to do with my upbringing forever had a new religion and I think that with he'd put my mom through in their 28yrs of marriage shed completely lost hers. When I delivered Virginia and held her to my chest I knew she was my little miracle and that everything about me would change for the better. When I watched her disappear into herself our elephant made me question the purpose of life. 

The way in one hand you could be given the most beautiful and amazing thing in the world only to watch it suffer, but time and time again through the various feats of danger we encountered along the way I found something to believe in. I could feel someone looking out for Ginny and watching over her and then her sisters came. Beautiful and amazing creatures I've been watching grow, terrified that one day the elephant will sweep them away from me as well. I knew I wanted them raised with the belief that they would never be alone because there is no worse a fate and I knew I wanted values set into theirs hearts and to watch them grow in their beliefs. I don't expect for them to be narrowed by the fact they attend church weekly, I expect them to be broadend. To know that whatever they believe I will respect and that to me they will always be my miracles. That I will remain in wonder of them always and put them and there safety above all.

What happens next I can only hope that again Ginny's guardian is keeping close eye. That they help social services come up with a way to secure of household or that they come to see that we have exhausted our options and that we only do what is best for our children. As my mom leaves Sunday night or Monday morning for a two week rest before returning to birthday season and then returning to the states that hives Tabby and Nikki two days from yesterday to come up with a suitable alternative to Ginny's night latch if they still insist it needs to be removed because otherwise as a responsible human being, let alone mother, I can not subject my children to the risks surrounding its removal. The clock is ticking and I do hope Hertfordshire disabled children's team is working harder at trying to secure the safety of of our household than merely just deeming me unreasonable and noncompliant.

Saturday, 26 July 2014

Air Pentalum Exhibit in Milton Keynes

If you don't have any plans for tomorrow after church and can get over to Milton Keynes, why not check out the last day of the exhibit while it's here? Google Air Pentalum for details, directions and ticket info.

I was so pleased to hear Ginny really enjoyed her sensory experience there and wish I could have made it with all my girls! I would have loved to see her having such a lovely happy day after all the stress of the last week and very thankful a good friend, Georgina, posted it's details, Maddy, and that Ginny's usual Saturday carer and my mom were able to take her.

2-1 vs my 1-3(soon to be 4)

Apparently it will soon be deemed that Virginia requires 2-1 care so whenever support is put in there will be two carers in to do the job I (and millions of other parents) have to do on my own with not only Ginny but my other children. What about the many families who receive no support? What about the time those who do do not have the carers around and are expected to do the job of many? What about the families in countries where autism isn't seen as a real condition?

How is it fair, not just the ratio but how little we as parental carers are deemed worth? We don't get raises. We don't get vacations. We work around the clock, day and night, rain or sunshine, weekday, weekend and holidays. Every family vacation we still have our disabled child to mind, every time we go away on our own some other member of family takes on the responsibility. Unless the child is an only one and neither parent works there is no 2-1 ratio and in those cases the parents and family's are viewed as leeches on society.

Getting more support while I'm unwell is plus for Ginny but a major knock for me. It's a display of the reality of my life as Ginny's sole full time carer. It's also not as if these people will be in full time while I am unwell so what does it say about how much my health matters? What does it say about how I'm meant to recover from my spinal injury? 

It's not even as if Ginny is an only child, she's one of three(soon to be four) and my husband lives away for work. We're lucky to get him back two days in a week but someone has to pay the bills. Even if it means having to miss out on parents evenings, first steps, class plays and family camping trips with friends. All outings with friends for that matter. It means keeping our family separate for the girls scholastic stability and my husbands career, living what should have been a normal family but is at most times more like that of a divorced family. 

The only difference is love. Our children know that we love them and that we love each other. They know that as soon as it is practical for us all to live together we will. That it needs to be the right job, the right area, the right schools, the right house, the right garden, the right amount of recognised autism support before we can move. They are so young and still they understand why our family is different from those of their friends and they know we probably use the time we get to do more than most.

As many of you know a short while ago I was dealing with an international child support case for Virginia. My ex's family tried saying surely I could still manage at least part time work on top of caring for Ginny! Though the court ruled in my favour I would love to have this tidbit to rub in their smug faces now, then. These, the same people who insisted I was making a big deal out of nothing and that there was nothing wrong with Ginny. That I was just incompetent and inexperienced. These people who have in 8years only been in Virginia's company for what would amount to a handful of days if the hours were counted.

I have no concrete dissension with Ginny's biological father. We'd seperated while I was still expecting her, he'd visit her once a week for the first 6months of her life and then moved back to his home state. My husband and I met when Virginia was 15months old, we were engaged in 2.5months and he moved in with us a month later and we were married two years after we first became an item. 

There is no dispute as to who has played the fatherly role. James was there before Virginia regressed and had the burden of the depression it brought me during the pregnancy with Melody. He was the one up at all hours of the night trying to sooth her back to sleep when she awoke terrified and unable to communicate. He's the one she looks for when cross with me. She is just as much a daddy's girl as her sisters although all of our connections to her are strained because of the severity of her condition.

Had Ginny not been disabled, and to the extent to which she is, the circumstances would have been explained to the children; but as it is Ginny's connection with her sisters is of the upmost importance. After all James and I will not live forever and her sisters will need to check in on her often and make sure she is well cared for when we are gone. Having more siblings than one will hopefully spread the weight of this born into expectance. They are already growing up more compassionate and caring then most children their ages(5,2) and I try to tell myself that at least this is an advantage to being born young carers, a title I never wanted placed upon them but that is completely unavoidable. Luckily they'll be 3-1.

Friday, 25 July 2014

Another Evening with Our Elephant

Sooo today we a senior care worker from our agency sent out and the carer did quite well. Ginny was happy and well looked after, fed, bathed and dressed for bed. However she didn't think she needed to stay in Ginny's room after putting her to bed and went to do paperwork or something... 

The first time she checked on Ginny she was holding a plank of supporting wood she'd pulled out from under her loft bed! 

The second time Ginny had slid out of the top slit window and was on the top of the playroom roof contemplating on how to get down and ready to start attempts! 

The window hadn't been checked to make sure it was on the latch lock, she hadn't thought to check and with it being such apart of my day to day I honestly didn't think to ask her to run safety checks.

I had just been glad Ginny hadn't spent the time all stressed out so that was totally my bad, people can't be expected to think as much about these kind of things when they're not used to them even if it seems commonsense.

In short who knows if we'll see her again because she's probably had the fright of her life but if we do I'm sure she'll be super carful and alert to any possible safety risks and I do hope we do because besides the bedtime routine she managed entertaining Ginny very well and didn't leave a mess.

That said I have completely over done things and am very sore everywhere. Having to pull Ginny back through the window as my mom handed her back up is probably not recommended for women with high risk pregnancies and a herniated disk. 

Thank god mom was there, if not it would have been me jumping out the window and pushing her up and into the window. Also very thankful for our neighbour two doors down for bringing over a ladder to get mom down.

Tonight is going to be horrible. Ginny is calm and playing on my iPad in her bed(I've also reset the beam) and poor Melody was so frightened by the ordeal she begged to have a sleep over in Ginny's room so that she could look after her. I feel again so lucky to have such a wonderful caring child. 

That unfortunately will not help my pain levels so I can't expect sleep, even if up at my full medication allowance and I only hope the strain doesn't land me back in a&e tonight or tomorrow. I'm just glad Ginny is okay, as usual her elephant has tried to lead her astray but someone up there is looking after her.

Thursday, 24 July 2014

Around the time of her diagnosis


Complete nightmare , poor Ginny is going out of her mind, the carer that's been sent out to cover someone's hols is completely out of the depth!! The carer seemed lovely when she came only to do the evening slots for bedtime but unfortunately now that she's been here for longer stretches things are not going well. 

She let's Ginny make a complete mess of a room and leaves it like that, she's told us she can not take Ginny out on walks unless someone can come and collect her if Ginny acts up, she's told us she can't lift Ginny which very specifically was discussed as a requirement with our community manager from her caring agency, she will just sit in Ginny's room with her for hours doing nothing(which if that was okay by us we could just lock her in and turn on her room camera to watch her), and what's more my mom was on the garden with my other two and a toy came crashing out of the window! 

When my mom ran upstairs to see what on earth was going on Ginny was stood without her nappy on on the window sill with her 'carer' doing nothing about the matter or the fact a toy had been thrown out of the window that could have hit my mother or my other two children. Ginny is going out if her mind with frustration because the whole matter of keeping her happy and entertained is not being addressed. This girl is obviously completely out of her depth an the results are making things worse for us because instead of having a child who is happy we have a very angry and distressed one who has not burned off any energy. Something has to be done about this so back on the phone to agency, social services and brokerage I go :( 

All these new people constantly in and out us terribly disruptive, we've counted 11 different carers in and out since my spinal injury. How on Earth is she meant to adjust to new people at that rate?! It's not this agency's fault, they're doing their best to source carers and it's social services having intermittently put in a cheaper alternative instead of looking for the best care coverage for Ginny.

Ah, to be rich and just be able to find someone appropriate to take her out a few hours a day so she can be happy! There are simply not enough Maddys and Lindas in the world to cover the additional shifts and that's with mom still here, on the 3rd she's off to her sisters for two weeks and then what? How on earth will they manage to cover additional hours then?! :( so massively stressed out! This really not what I need right now. I had another bleed after Melody's end of year class picnic and have spent the last two days back on bedrest so I shouldn't even be getting up to have to manage new carers and dictate what needs to be done. 

All I can do is send emails and make phone calls. I feel so useless, so powerless. I'm so used to keeping my girls in tow, happy and healthy with days out on the common, at the park, over in St Albans feeding the ducks and swans or going for walks through the cathedral, or cinema screenings on rainy days. I hate seeing Ginny so distressed. This isn't my Ginny, this isn't the little girl who knows how much she's loved and tolerates her sisters affection, this little girl doesn't understand what or why everything has changed over night. She's suddenly too big for her waterpit but schools not on so she doesn't get in her weekly swim. 

Daddy's hardly ever home as he's not getting usual days off to be able to manage my medical appointments so there's no one to swing her around. Mommy can't carry her or go for nice longs days out, and all our usual camping trips have been cancelled. There're no trips to the seaside or walks along castles she's never visited before. And it's not for just a change for her but for all the girls. Everything is different and is out of my control. I've always managed to keep things normal for the girls during the bulk of my pregnancies but with my slipped/herniated/prolapsed disk there's not much I can do. The last thing I want to do is prolong my recovery and require spinal surgery after Amber Lily is delivered, I count the weeks down excited to meet her but hoping that with her arrival my life can soon go back to normal. That my back settles and we can be the family we were again. That I can be back in control.

Saturday, 12 July 2014

What could possibly come next?

I give up! How can anyone manage a child who not only takes advantage of you being unwell to act up but will break into her grandmother's luggage (who is only here to help look after her for the summer)and everything including her clothes etc,destroy hundreds of pounds worth of oil paints, destroy her new room we've worked so hard on, her own clothes and possibly poison herself all because she feels like it and takes no consideration. Have woken up feeling terribly defeated, her elephant has completely defeated me. It's not fair that her 5 yr old sister has to deal with the 2yr old, to keep her safe from her sister's actions while Virginia and her mess are dealt with. It's not fair that anyone has to wake up to such disaster. This morning our unwanted lodger has taken control of Ginny. The elephant has trampled all over our lives and there's nothing left, and I'm unable to do a thing but watch. At my weakest during the two hrs in which my slow release morphine fades before my next 12hrly dose can be administered. I don't know what's left to feel. What happens next?