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.


  1. Thinking of you all - I know absolutely how difficult this time is - ad you say, these professionals leave their offices, return home to their cosey existences with not the faintest idea of actually living the kind of life that you and your family live, and the life that we lived for many years - as the saying goes "you have to live it to know it" and that is something they will never fully appreciate.

    1. It's just mind boggling. I asked them if the planned to build a wall and door around the stairwell because with the door unlocked that was/is the only way it can possibly be secured, oh and of course the closed off staircase would also need a lock if not it would still be a safety risk! I also asked them if they proposed that the other children, the ones which do have an understanding and would suffer being unable to access the bathroom when needed, slept behind a locked door? After all if overnight care was not a feasible option then how did they imagine the other children would remain safe?

  2. Just read your blog update and wanted to send some hugs your way. You really don't need this at the moment and they are just wrong! I've seen the locks and thought they were a brilliant idea to keep everyone safe - most of all Ginny. Surely they should be able to see that especially when they can't come up with a better solution.

    I can see why, in general, they don't want kids locked in rooms but in some individual circumstances it's the best thing for the child - there are plenty of people who put a stairgate on their toddler's bedroom to stop them wandering down the stairs. I can't really see why this is different.

    And I suspect you're probably right that they don't want to talk in the street to save their own embarrassment.

    Anyway - hope they leave you in peace. You're doing a brilliant job and Ginny is very lucky to have such a loving family around her.

    1. Thank you!! I know they are being ridiculous and the fact that they've gone and said oh don't go upsetting yourself was just the cherry topper. I don't know if they imagine that they can magically just make things better with their words but we'll see what they come up with today. Really appreciate the support! The hugs too! Xxx

  3. I don't even have words. I love to read all that you write, but right now my heart feels for you. You are by far the most strong of mothers and women I have even come across. Amazing, amazing mother, and your love for your children is completely incredible!

    1. Thank you! It's great to be reassured by both parents with and without disabled children. I know that what I do, I do for the good of my family and I'm glad that those not bound by their job expectations can see my actions as reasonable!

  4. Wow. Have you thought of going to BBC or Channel 4 with this? Hubby has lots of connections - let me know if you want to think about it. Nothing like media attention to get a council to backpeddle!

  5. That is so rediculious! I can't believe social services is not being more reasonable. They should just commend you for the amazing job you are doing and leave it at that.

  6. Time's up and social have agreed to a week's wake night observation! Woohoo, that of course is subject to whether they can source an appropriate carer to provide wake in night care, which is a matter that will have to be dealt with next week.

    1. You are a superstar!

    2. Well at least they agreed to that. I'm sure that they will come to see your point of view after the observation. They better!

    3. If they can find an agency to provide the wake night carer! Well see, fingers crossed!!

    4. This is a step in the right direction. Got everything crossed for you and Ginny. <3

  7. Yes! Thank you! It is very much appreciated!