JT's story

The mental health of disabled children and young people and their care givers has dramatically declined during the pandemic. Our emergency overnight respite care, community 1:1 outreach and telephone help for families struggling to cope will help them to rebuild, regroup and rebalance their lives.

Please consider donating to the Big Give Christmas Challenge, where your donation will be matched by corporate and community sponsors, making your gift go twice as far to help families in need.

Families like John-Tyler's, or JT as he is known.

His dad explains: “JT has profound Autism and finds it very hard to settle in to somewhere new. He had become quite isolated in recent years, even before current restrictions, so it had become increasingly hard to function as a family over the years and do normal family things.

Because of the pandemic, there was a long pause in respite provision as his transition to Rose Road was due to happen just as it hit. So when it began our greatest fear was him not 'eating' as he only drinks in a couple of settings (he has a liquid diet caused by ARFID - avoidant restrictive food intake disorder).

However, he settled in very quickly and readily accepted Rose Road, which is a great testament to the patience of staff who really seem to 'get him'.

Having Rose Road during a time when our entire support network fell away has been so important for the whole family's wellbeing and mental health.

JT massively benefits from going as it has built up his confidence and independence to be able to receive support outside of his home and school. It has also given the family a chance to have a rest from a very strict routine and narrow activity.

Living with profound autism can put a lot of strain and restriction on a family and the short breaks that Rose Road provides allows us to be an average family.

We can do things we would normally miss out on such as having a meal out, going to family events, to the cinema, or going to the beach for longer than 15 minutes. The extended respite JT had this year even allowed us to go away for 5 nights. This was so amazing I cannot put into words how grateful we are for this.

While we always feel a tremendous amount of guilt and it broke my heart not to have JT with us to enjoy these things, we knew that he would not be happy. And JT is obviously very happy at Rose Road, which gives us peace of mind.

Christmas is usually the hardest time of the year as there is a break in routine with no school, which can cause anxiety in JT and there are very few or no options to keep him happy and occupied. We totally understand the hardworking team at Rose Road deserve a break at this time so they can be with their families, and what has become important to us is having Rose Road’s support throughout the year.

This has enabled us to realise a goal of having a family holiday and recharge our batteries, which makes us more resilient to be able to cope as this Christmas approaches.

We feel Rose Road provides a safe and secure environment, and it is very reassuring to us that JT is happy when he is away from us”.

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We are constantly working to be there for as many disabled children and young people and their families as we can, providing scheduled and emergency overnight respite care, community 1:1 outreach and telephone help and advice to families across Southampton and the surrounding region.

Please donate to enable us to help more young people like JT and make a difference for their families. Every donation made throughout the Big Give week will be doubled, making your contribution go twice as far!