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