So within moments of walking into the family home we’re ushered up a glass staircase to the 3rd floor to a humongous lounge area where, I kid you not, the table is covered in caviar; bottles of vodka and shot glasses! Making our apologies we persuade our hosts it’s probably best we don’t drink any alcohol (I make it a rule never to drink whilst working away). The parents discuss their concerns regarding their child’s diagnosis and development and my colleague and I are then taken up to the child’s playroom to meet her.
The case history gathered can be summarised as:
- 11 year old child with vocalisations but no approximations.
- Diagnosis of Epilepsy.
- Has never been assessed by SLT / OT / Psych before.
- There are no plastic / textured / wooden toys whatsoever in the family house. Well, more accurately, the only toys that are present are soft toys / teddy bears s
- Family’s first language is Russian however English is regularly used.
Crucially, and something I had not encountered previously, the child has never left the family complex (ever) as the family Neurologist had explained to parents that their condition is so severe they should be “constantly be kept safe”.Over the next three days my colleague I step all day light hours observing and assessing the child and each evening we’re, one again, offered (and politely decline) Vodka shots before we’re ushered to our hotel suites to rest.The most challenging part of the trip I would was the uncertainty as to what could happen next in terms of intervention as the family had no plans whatsoever to leave Russia with the child and there were absolutely zero local therapeutic services. Whilst our remit began with solely assessing the child and creating a plan for the family to follow we encouraged the family to allow us to carry out workshops and training to absolutely everyone the child came into contact with (in the family complex) in several topics including ‘How to maximise communication and independence opportunities’. The training was received with open arms and even our gun-totting security guards attended!!Leaving the family on day 4 we felt confident that we had implemented a sustainable programme and affected lasting change to the child’s environment and independence skills including:
- Choice making (via choice boards of uniform photos + writing and / or with gestures) of clothes / food / stories / TV shows / who would push them on the swing / which car to drive around the complex in / what to drink.
- Following a JIG to put their clothes on in the morning.
- Beginning to brush their own teeth.
The biggest change was persuading parents that they can safely, with a risk assessment, take them to a vast variety of locations for them to experience the world around them. Who knows maybe someday they might even visit London?!
Five years on, and whilst we haven’t returned to Russia (yet!), I am in regular communication with the father and I receive inspiring updates on the radical changes they have made in the child’s life.
