The institutionalized Reality

Small Group Home Reality

The next 4 days in Sofia i found carried challenges that I had hadn’t initially contemplated… trying to interact and stimulate children that have an army of problems that you can’t even begin to comprehend is a daunting task.Therefore you spend a lot of time trying to think what will work best for them and what levels of interaction they have had or will respond best to. You want so much for them to respond to something, not for yourself, for them. A break through that will encourage an engagement in feelings.

Taking them to the park each morning displayed a harsh reality that I just hadn’t prepared for or expected... Bulgaria has a huge issue with prejudice against Roma people and from what I have seen and heard from natives an ignorance or should I say a disregard for children that have any kind of disability. I appreciate that could be seen as a huge generalisation and not everyone here is like that, but 32 child institutes and countless adult institutes speak volumes.

Taking this into consideration; picture taking the kids from the home to the local park…. We take a child each to the park for around 20 minutes, with 2 of us going 20 minutes means we can get each child out before lunchtime at 11.45. Seen as this is the only time they every leave the home or even go outside, you want to make the most of it for them.

We found taking 2 children of the same ability worked best otherwise one would miss out because another took more time etc.. so first we would take Layla and Jane – as I said before they are both blind – Layla able to walk well and Jane walking assisted but not with ease. Then James and Oliver who are both wheel chair bound… Oliver having very little neck muscles meant that his head slumped forward the whole time in the pram… but by putting him in the position he would try and lift his head even if for just a few seconds – building up the muscles… in the 2 months the other volunteers had been there he had come on drastically.

Oliver has full sight so we would pick him up and let him put his arms on the climbing frame pulling himself up ( assisted) to build up the strength in his arms – the other volunteers had also spent time everyday encouraging him to wheel his wheelchair himself – 2 months later he can now wheel himself completely!

Layla is one of the easier children to take out as 80% of the time she will take direction from you, even if she isn’t happy about it. I sing to her the whole way trying to get her engaging or displaying some sort of interaction with what I am saying – it’s obviously a barrier that the little language they know isn’t English… so you often spend a lot of time talking to them; for example every time I cuddled them I would embrace them and say ah cuddles then squeeze them.. but you do often think, I wander if this is making any sense to you or if you are even taking in what I am saying?!

Jane was a different story, never ever wants to walk always to be picked up and cuddled – such an affectionate little girl. For the first few days after her fav volunteer left she came to us with ease but once you had put her down, gone too something else then come back to her she would have none of it, pushing you away and burying her head in her lap… I imagine this was her anger at you leaving her, after all not only has she been abandoned, she cant see.. so in your head you know you are just nipping off to do something and will be back but in hers she has just been left alone again. Her behaviour taught me always to tell the kids in Bulgarian that you would be back. I know it sounds terribly simple but you just don’t think about it at the time. Another sign of respect for their feelings that I think is so important if they are ever going to build trusting relationships with other people.

On the journey to the park you would have people blatantly staring at you, pointing, walking the other way, tapping there friends to show them the kids are coming and moving their children away from us. I am not naive to think that people are often not as respectful to special needs as they should be – but I hadn’t seen it this bad before. It was even worse when we were with either Layla – Jane or Olivia who are all from Roma backgrounds.

I can’t stand this elephant in the room behaviour; there is nothing to be ashamed of so I would make a point of saying hello to each one and smiling at them, sitting on the bench that was most convenient for us not for anyone else. Actually around 40% of people would smile and say hello back, smiling at the kids also – breaking public taboo is so important -it was me saying, yes this is happening. Yes beyond your front room there are children that are being failed by the system – after all if no one knows its happening how can we expect it to change?

Steven and Christopher would be our last duo.

Steven I find one of the most complex personalities to gauge, When taking the kids out to the park you have to learn very quickly what your back up plan is going to be if they decide not to play ball.

Due to alot of them having different emotional triggers and schizophrenia they could turn at any given second, for instance one morning when walking with Steven accross the main road he went into one, legs gave way and he fell to the road and start headbutting the ground whilst crying out. With him being a being the size of a 14 year old, able to move all of his limbs and trying to head butt anything closeby to feel something,made it all the more challenging of how you were going to move him to safety!

For me with Steven there was no fail safe, nothing i seemed to do would give me a guaranteed response. One minute one thing would calm him or make him relax but then 5 minutes later that would agrivate him.

He is very driven by smell, much more then the other children - they don't essentially have a bond with you personally its the idea of you... anyone that came and repeated what you did would gain the same response.

It was evident that due to his smell senses Steven wasn't going to accept you as willingly as the other children.. he needed time and consistency with you to let you in. You could see this by his relationship with one of the carers, as soon as she was on duty you have never seen such a calm and happy, smiling, boy. When she wasn't on duty he spent all of his time headbutting anything close to him that was solid, crying or just rocking silently. An awful reality to witness - because you felt so helpless.. you didn't know what to do to ease the pain for him.

Seeing the interaction between him and the carer made you feel so much better for him, you could see where she had taken the time and given him consistent attention that allowed him to form a relationship with her.

It made me want to bring all the other carers in who just thought he was a lost cause, show them that it is possible to connect and develop even the most challenging and misunderstood kids. Something you can fully appreciate would seem an impossible task.

Learnings and Breakthroughs

As i said in my first blog the reason for coming on this trip was to truly understand this problem with my own eyes and learn as much as i could whilst here.

The small group home is what all the children will eventually transition into, so understanding its qualities and also its downfalls was so important for me.

The children ultimately are so much better off in the homes, yet it is a worry that with one carer and 8 children the childs mental state is still at great risk. If the hands on care isn't provided for each child it will just become a glorified mini institution.

I don't yet know the plan for these homes or the how the government or unicef foresee the transition happening. It will one of the things on my list to look into and help support if i can.

As for the children... we had so many wonderful breakthroughs with them in the very short time we were with them... i wanted to end this blog on some moments that Ruth and i experienced.

Jane overcoming her anger at being put down once you had played with her and gone to the next child, after a few days she embraced you 90% of the time and either giggled like crazy at you bobbing her up and down or spent the whole time finding your mouth with her cheek so you would kiss it.

Ali's smile as you sat with her and sung into her eyes whilst stroking her hair... with her coming from a normal home she had a depth to her eyes like there really was a normal, functioning brain in there trying desperately to talk to you. I will never forget that look in her eyes and her huge smile as you sung away...

Layla, Oh Layla... if i could have snuck her on the plane with me i would have.

Everyday after Layla ate, her body would flop and she would fall to the floor where ever she was and put her finger into her eye, rock and moan/cry to herself. If you were to approach her at that point she would almost every time either push you away or grab and bite you.

I really wanted to try and break this cycle - clearly in her past something had happened to her after eating, so after every meal i would take her and keep her engaged for as long as i could. Working on it after every meal made such a huge difference. It went from her being angry and biting to her just crying and wanting to be held, something that she clearly hadn't ever experienced. It was pushing her a little bit everyday to stay engaged and then also knowing when to just let her go, as i said before you have to give them the respect as you would anyone else when they need some time.

The day i left the home for the first week, i was in the room next door to Layla getting Oliver ready for the park. She had smell sensed me from the other room, walked in and held her arms up behind me - ' Layla Cuddles?'

I could not believe it...... I had spent so much time trying to associate physical touch with speech so she would connect the two and understand

Then this... tears fell at the thought... that she knew what a cuddle was now... knew how to initiate one. Oh it was a moment i will never forget

Jane - She built such an association of happiness with our voices that when sat away from you the sound of it made her sit and giggle to herself, wriggling around as if you were tickling her. Just gorgeous.

When you witness and most importantly feel moments like that with another human being, it somehow puts everything into perspective. Makes you realize that its these moments, that human connection, is what life is all about. Everything else fades into the distance.

I left feeling satisfied that we had been nothing but a source of positivitey for the children, A feeling of complete joy at the same time of feeling like you couldn't bare to leave them. This is why it is so important to have constant volunteers, you know that your work and there lives will keep improving and building on what they have achieved.

Next stop was the child institute of 160 in Pleven, a whole new kind of emotional rollercoaster.

Thank you again for reading and joining my journey for change.

Hells x

Jumping on the roller coaster

здравей от България or Hello from Bulgaria!

Wow so the first week of volunteering life is officially done... I can't quite figure out whether it went by in the blink of an eye or it feels like i have been doing this a year already?! Judging by the circles under my eyes or the excitement I have at the thought of sleeping... maybe it's the latter!

I have sat and tried to articulate all the thoughts and feelings I have had going around in my head every night since I arrived. I can't tell you how difficult it has been. Trying to digest what you are experiencing and making sense of how you feel about it... trying to explain it to anyone that isn't here has seemed impossible! 

So, sorry for not updating you sooner - it hasn't been for the lack of trying.. i want to inspire, inform and raise awareness as best i can.

Jumping on the roller coaster..

Arriving here on saturday morning was a very strange feeling, you have sat and tried to prepare yourself for what you are about to do and you think you are ready to go... then you arrive and you think.. oh.. err... i don't know if im ready for this yet!!!

Lucky for me I flew in with another volunteer, Ruth. She has been over here a few years ago and is a wealth of insightful information, she knows the emotional roller coaster that we were both about to jump onto.

We are staying together with two other volunteers, that have already been here for 2 months, in an apartment arranged by the charity. The apartment is 10 minutes away from the airport, the city centre and the home.

Monday came around and we all went into the home as a foursome, due to the charity being very much a small one, they don't have anyone here representing as such.. they have a contact at each home they are involved with that is a 'Go To' person for the volunteers. If there are already volunteers out here they will spend at least a day with you showing you the ropes, most importantly information on new developments/ issues with the kids so you can make sure that you continue with their development.

The home that TBACT are involved with in Sofia is a new project, it is what they call a 'small group home'. Ultimately the plan in Bulgaria is to close all institutions and put children into these small group homes, consisting of around 8 children so that they grow up in more of a family environment and hopefully put a stop to the behaviours children adopt in response to institutionalisation.

The home is in a residential area and looks like any other family home… you would never know it was a home if there wasn't a little Unicef sign outside. It was cleaner and much better presented then I expected, nice childrens' beds, tiled floors, toys everywhere and the children all well clothed and clean. I was aware that looks can be very much deceiving in the homes/institutes - lots of children can be laid in mess due to carers being slack, l was relieved for them that this wasn't the case..

The Sofia Children

There are 7 children, apart from Ali,that have all come from different institutions which in turn means their behavior has been severely, if not completely, influenced by institutionalisation. By this I mean constant rocking, lip vibrating, screams, lack of speech.. this list can go on and on but these are a few common behaviours.

Here are a list of the kids and there problems:

Layla 12 yrs -  paranoid schizophrenia, blindness, mental retardation, medication neoris

Oliver 12 years - congenital blindness, infantile cerebral paralysis, severe mental retardation, epilepsy

Ali 18 yr old infantile cerebral paralysis, severe mental retardation. medication depakin. 

James 17 years - diagnosis paranoid schizophrenia, infantile cerebral paralysis, severe mental retardation, medication depakin, olanzapine

Steven 16 years  - diagnosis glaucoma, infantile cerebral paralysis, severe mental retardation, cataracts in both eyes, epilepsy. medication depakin, rispolept, akinestat

Christopher 13 years - Down syndrome, severe mental retardation.

Jane - Blind

As I'm sure you will agree it's a daunting list of problems with long unfamiliar words... many of which in any other circumstance could be controlled or made drastically better. Unfortunately for these little ones their problems like blindness, which we may class as the most problematic aren't the ones that stand out when you meet them.

Upon meeting all the children i felt surprisingly composed and in control of my emotions, something that i thought i would really struggle with. It's amazing what you can do when you are actually 'in' a situation as opposed to thinking about it. You just take a breath and embrace it. The images that I had are all from Kate's documentary, this was the institutes at there very worst, so i knew that the children's environment would be considerably better... though all these kids are still a product of that original environment.

The first room that i went into was with James, Steven and Oliver, all sat in their beds. This is completely typical in homes/institutes for varying reasons... mainly it's either that the kids can't move due to disabilities, they have developed abnormal/ distorted bodies due to being bed bound with lack of physical stimulation so they can no longer move unassisted, if at all, or they have developed unpredictable/ difficult behaviour due to institutionalisation. Unfortunately it's easier for the carers if they are left in their beds.

James was sat up in his bed when i walked in, he has scars all over his arms, legs and forehead where he was chained to his bed and wheelchair in his previous care.. horrifying to see as i'm sure you can imagine. He has movement of upper body but little use of his legs, something I wonder could have been different had he had been encouraged or stimulated. He was screaming with happiness to see the volunteers from before, trying to bum shuffle his way to the end of his bed to be near them. 

The thing that struck me with James was his eyes. He, unlike most of them can see, yet there was nothing happening behind his eyes, he just looked at you like you could have been a ball or a table – very little association that you were a person – I wonder whether this is because he has had such little contact with humans on a greater level then someone just changing his nappy( yes he is still in nappies at 17), changing his clothes or feeding him. I guess why would you associate that another human can do anything other than this if that’s all you have ever known? I still find that the most difficult thing to comprehend and remember when you are spending time with these kids, although on varying degrees they have had zero human contact physically or mentally their whole life, can you even imagine being 17 and having never engaged in conversation? having the mental age of a toddler? 

It was amazing to see James's response to the volunteer, considering that he was one of the children that two months ago was shut in a room alone for being too noisy - now he actually has made a connection with someone and feels an emotion tie with them.

Next I moved on to meet Steven, he came from the Mogilino Carehome where Kate's film was shot. He is 17 and blind, although he doesn't look as developed as an average 17 year old,  he can still walk and use his limbs normally.

Steven rocks continuously, even when you are sat with him - which is strange as most of the kids stop when you are interacting with them. When I approached him I sat with him quietly and said "hello". I let him sniff my hand to identify who i was. I was advised that Steven doesn't respond very well to new people, he took my hand and held it then went back to his rocking...

When you are here it's really important to respect the children's space, it's very easy to smother them with love or try to push interaction with you. Although this is done with your best intentions it's something that should be encouraged not pushed... you have to understand each child and there boundaries and engage with them on a level that works best for them even though this may not be the easiest for you.

Next was Oliver, 12 years old but looked about 4. Heavily distorted – legs bent and facing the wrong way – no neck muscles due to the fact he has been kept lying on his back most of his life. He is such a beautiful looking little boy with so much charm and a smile to die for – amazing that even though they have had no engagement there character traits still shine through. He has a really infectious smile and despite his blindness and lack of being able to move, he has such a happy disposition - wonderful to witness. I cooed and tickled him for a little while then wondered through into the next room where the rest of the children are.

In this room there are 3 beds and a big play mat.. 2 of the kids were laid on the mat rocking, Christopher who has downs was running around the floor pulling at you and squealing with excitement at your arrival... displaying a beautiful smile every time you engaged with him.

Ali was laid in the bed at the back of the room, she has cerebral palsy and was put into the home only last year by her family, her mother was unable to care for her due to her own disabilities so handed her over into care. She is completely bed bound, her bodily hea. I can't quite figure out whet communication is a HUGE smile and movement of her hands... ahhh, the look on her face when i stroked her head and kissed her was gorgeous.. just the smallest human touch can mean so much. 

Next I sat near Layla. She is 12 but looks around 8, blind and prone to having mini panic attacks where she decides that she doesn't want to be near you anymore, moves away from you to start rocking and moaning to herself. Trying to engage with her at those moments can conclude in her biting and hitting you - she had also been left in a room alone before the volunteers went in, from what we understand it was due to her attacks and his disruption. The volunteers had done incredible work on getting her to re-engage with them - after all shutting them away makes them feel like they have been abandoned all over again. I knew that getting to know her patterns was extremely important if i was going to get anywhere with her development.

What happened next will be a moment that will stay with me forever - I sat down a few feet from Layla and started to sing a song... it's such an easy stimulus that reaches everyone in the room. A few seconds in and her face lit up with this huge smile, she smell sensed where I was and bum shuffled over to me where she snuggled into my neck and put her arms on my lap for some contact. As I stopped she clapped and smiled repeating her name with joy in her voice... i was dumbfounded by the response from her! She can't speak, just says words here and there but mainly her name when she is happy... for something i did to connect with her and make her feel joy and make an attachment/emotion to someone was incredible. How can anyone say these kids can't develop?

Lastly my attentions came to Jane, a little Roma girl with an eye missing. She hasn't had any other diagnosis but displays typical institution traits - rocks, little body development, very little speech, just random words. She is able to walk but with assistance and can be all over the place when she does so. Jane gave us no attention the first day as she had made quite the attachment to another volunteer, once she knows the other volunteer is in the building she isn't interested in anyone else going near her! - pretty incredible really that she can still create an attachment and emotion for someone. So although i observed her, they was no cuddles and kisses... well not yet anyway.

Sofia Daily Routine

Our daily routine is that we begin at 9.30am, go in and brush all the kids teeth - something that isn't done as standard. Take a child each to the park over the road, making sure that everyone has been taken and is back at 11.45am for lunch.

Once the kids have had their lunch we then go for lunch ourselves and are back by 3pm. Once back we feed the kids a banana - something that the volunteers introduced to the carers so the kids are getting a snack and some fruit in their diet. This sounds a very simple introduction yet the carers speak zero english and to introduce anything it has to go through the institutions director. Change isn't welcomed with open arms here... how you approach a situation here means everything if you want the right outcome. The afternoon is then ours to stimulate the children, either outside on a play mat or upstairs in the play room. For the first day Ruth and I just observed and tried to understand how best to interact with the kids, what actions can trigger certain emotions in them and how best to deal with each childs displays of emotion.

One thing that struck me; how in the world does one carer look after 7 heavily affected and disabled children alone? It was mayhem with five of us let alone one! Even with all the will in the world it would be difficult to engage with them after doing all the chores, let alone when some of the careers may not want to do the job in the first place. It's something that i know is high on the charities agenda. It is all very well closing institutes, no one can argue this is a much better option, but there needs to be better resource in place to help with the children - otherwise it's just the same problem but spread out in 100's of homes. Another reason it is so important to have a constant flow of volunteers working in the homes and building upon the childrens' development.

Arriving back to the flat in the evening was very welcome, looking after 7 able children is tiring... times that by a 100 and it just about reflects how mentally tired you feel afterwards!  It's funny how your mind works when you are out here, what you are seeing is pretty horrific yet here it's reality... so although you know it's not right you have to accept it for what it is and work as best as you can - choosing your battles wisely. I find thinking about it to much doesn't help me, you have to channel it in a way that makes you stay strong and able to give all you can in the present time. The first day it was a case of laying on Ruth's bed and anticipating the week we had ahead of us..  

I will update you on the rest of the week in the next few days... ahhh and the mammoth blog is complete.

Thanks again for your interest and support.

Helen x

All views and opinions in this blog are mine and mine alone - i am not speaking on behalf of any organisation.
All names have been changed for child protection reasons.