Sandhya + Vasudha's Story - Carers' Week

It’s Carers’ Week this week and we thought it really important to hear the voice of one of our parent/carers on the blog. We recently had a chat with the wonderful Sandhya, mum and carer to our trainee Vasudha. Sandhya was incredibly open and talked to us at length about her journey from her ‘previous life’ (in her words) as an investment banker to being thrown into a totally new world as a carer after discovering that Vasudha had a chromosomal abnormality. More recently, and 3 years after starting the process, Vasudha has also been diagnosed with autism.

Vasudha

Vasudha is an engaging and confident young woman and an absolute credit to the hard work, guidance and care of her parents. Granted, life is different for her than for other 25 year olds, but it’s clear that Vasudha has come on leaps and bounds with her confidence and independence in recent years. She even completely understands a second language, Hindi!

We had the pleasure, recently, of spending the morning with Vasudha at our enterprise Beans and Bloom café. Beans and Bloom was established to help give purpose to our trainees and to increase their employability skills. During the session, we discovered that Vasudha loves shopping and listening to music in her bedroom. She is bright and chatty with opinions on every subject from rappers to trainers to holidays! 🙂 Learn more about Vasudha’s story at Nickel Support in our impact report here. 

Life as ‘a carer’

During our conversation, Sandhya acknowledged that she still finds it difficult to recognise herself as a ‘carer’ and to give advice to other carers, admitting that she is still learning how to manage life as a carer herself - an ever-evolving journey. Whilst she has built some resilience over the years to deal with Vasudha’s needs, it is still overwhelming and she can be uncertain at times of some of the decisions that she makes. However, after our chat with Sandhya, we found that our understanding of caring really improved, and we wanted to share some of this information in case it was helpful to other parents and carers.

It goes without saying that every situation is different and levels of independence, support networks, financial situations etc can all have a huge positive or negative impact on life.

The initial diagnosis

According to Sandhya, finding out that your child has a learning disability or autism is life-changing and the process of acknowledging, digesting and coming to terms with this information can be very slow. It took time to understand the impact that caring would have and Sandhya admitted going through a type of  grieving process of the life and parenting experience that she never had. The sadness of this hasn’t gone away, but with time Sandhya has learnt how to deal with it more effectively. Although she feels more capable, knowledgeable and empowered now, the situation at home can still be difficult and all-consuming. 

Greater confidence as a carer comes with time and experience

Sandhya said that it’s very easy to doubt your abilities and have your confidence eroded as a parent or carer. In the past few years she has become more confident at navigating the system and learned how to more effectively advocate for Vasudha. Sometimes, Sandhya has found that professionals can be dismissive which compounds feelings of incapability, even in some cases struggling to understand the vocabulary that they use. This is something that takes time and experience and by chatting to other people in your community and professionals, you can learn to cope better and become more confident.

Respite time 

Sandhya enjoys time by herself when she can reclaim her identity as herself, rather than just a Mum. The amount of respite time for Sandhya varies from day to day and sometimes Sandhya can find it difficult to balance her energy and manage her mind. The times when Vasudha is occupied in sessions at Nickel Support tends to be the time that Sandhya has to herself, and also when she is at work helping other parents and carers that have found themselves in the same situation. For her, it is positive and rewarding and she can see how much value she is adding by ‘holding the hands’ of others. This has really improved her emotional wellbeing. 

Networks

Connections are so important to be able to vent, ask for advice, boost positivity and more. Sandhya acknowledged that it can sometimes be difficult for old friends to fully empathise and that their lives are on a very different trajectory in terms of parenthood. She recognised that her most powerful network is other parents and carers of adults with additional needs… people who are in a similar situation and can provide support, empathy and be a useful listening ear. She has attended as many local support groups, networks and events as possible and established connections with people who are all going through different versions of the same thing. She would highly recommend others to do the same. 

The balance of time

Sandhya explained that when you care for an adult with learning disability or autism, sometimes only 10% of the extra work relates to the care of the adult and 90% can be related to admin associated with them. Advocating for them, making sure that they have access to appropriate therapies, chasing up people and paperwork can eat into your day and week, and can be very overwhelming. There can be many obstacles to getting the therapies and support that you need. Sandhya spends time taking on these tasks when Vasudha is at college or in sessions at Nickel Support. 

Increasing confidence and independence 

Despite her vulnerabilities, Vasudha is involved in all decisions relating to her and has a good degree of agency over the way she spends her time. She likes structure and predictability and is able to voice and express her wishes in terms of the sessions that she would like to attend, what she would like to study at college etc. Sandhya talked about giving her ‘managed independence’, allowing her to choose between a few options but not giving her total free rein due to safeguarding. She is supportive when Vasudha makes a ‘bad choice’, communicating to her that we all make questionable choices at times and that is completely normal. 

Siblings

Sandhya mentioned that parents of adults with a learning disability/autism can be especially sensitive to the impact that this may have on their siblings and sometimes find it difficult to have open conversations about this. It can be a constant worry that siblings may be burdened with a sense of responsibility, especially in later years. Sandhya has found this difficult but tries hard to make sure that Vasudha’s brother is recognised as a young carer and aims to increase his understanding of Vasudha’s conditions and needs, enabling him to advocate for himself. She has had numerous conversations with his schools to ensure that he can seek support when necessary and to make sure that they recognise him as a carer. 

What have you learnt about yourself over time?

Sandhya now realises that it’s ok to say ‘it’s difficult’, to cry and to not be able to fix everything. She explained that it has taken time to realise this and she just tries to be the best parent that she can be to put things into place to keep both of her children (now adults) safe and healthy. As a carer it’s important to get respite for yourself in the way that gives you the most benefit. For Sandhya one of these ways is actually to help and support other parents in similar situations. She has learnt to channel her worry and anxieties about Vasudha into action and positivity. 

Important Skills

Trying to remain as calm as possible is important and allowing yourself time and space to get it wrong. It’s ok to not ‘achieve’ everything that you might like in an ideal world for your adult with learning disability or autism as sometimes there are people or barriers or systems in the way which are impossible to overcome. Also it’s important to be persistent and thorough, sometimes having to be strong and not taking ‘no’ for an answer. Sandhya feels better when she is busy both physically and mentally. Although it’s not always possible, she tries to keep calm, voice if she is struggling and importantly, not to always get too drawn into things! Sometimes it’s more beneficial for emotional health to let things lie. 

Days out

Vasudha loves a day out and once a month on a Sunday, Sandhya and Vasudha will go on a day out to a place of Vasudha’s choice. She may choose to visit London or go shopping to Bluewater, for example. This time spent together doing something joyful and positive is really important for mum and daughter to connect regularly and maintain a positive relationship. Vasudha is not an independent traveller but does always plan the journey, giving input on the best and quickest route to the destination. 

Gratitude

Whilst life is difficult and extremely busy, Sandhya does try to focus on some of the positive aspects about life. She is very grateful to be financially comfortable and recognises that for many families, financial difficulties would greatly exacerbate other worries whilst caring for a child with additional needs. She talked about the importance of being kind to yourself and doing what you can with your time and resources.

We want to thank Sandhya for being so incredibly generous with her and Vasudha’s story - we are so grateful! We hope that other parents or carers that are reading may find this piece relatable or interesting.