Siblings and Special Educational Needs
All parents worry about giving equal attention to their children, but when one of yours has special needs, the scales inevitably get tipped in one direction. Bernadette John reports.
‘Just accept the fact that you are going to feel guilty whatever you do,’ says Caitlin Ash, whose second of four children, Maya, suffered brain damage during a complicated birth and has multiple disabilities.
‘For 90 per cent of the time my other children’s needs have to take a back step while I am caring for Maya. I’m constantly telling them we can’t do activities she can’t manage, or they can’t have friends for a sleepover. So I take whatever opportunities I can to have Maya cared for while I have a couple of hours with the other kids. Of course then I feel guilty about her missing out.’
Ash sends Maya on play schemes operated by groups such as Mencap and VSU during school holidays. All local authorities have details of these activities on their website - search under short breaks. Parents can also apply to their local authority for direct payments (which allows them to buy in a carer for a couple of hours) or for occasional overnight respite care – speak to the authority’s disabled children’s social work team about this.
Mark Watts has taken advantage of both. His son Ryan has autism. ‘We employed a carer to look after Ryan while we held a birthday party for my daughter, so she could be the centre of attention, and didn’t have to worry about him having a meltdown in front of her friends. Another time she was a bridesmaid at a family wedding, and we used overnight respite so we could go without worrying we would have to flee mid-service if Ryan became overwhelmed,’ he explains.
However, in many areas these life-saving services are being cut under austerity measures, which has Watts fuming. ‘We get this help once in a blue moon so that we can enjoy the things that other families take for granted every weekend. Yet we’re under threat of these being taken away.’
Giving siblings a breather from the home environment can also help. Research suggests that siblings of disabled children tend to experience higher levels of stress, loneliness and depression – but this can be mitigated by getting support for them.
Young Carers organisations around the country run after school or weekend groups, as well as camping trips and annual festivals, which allow children to have time apart from the disabled sibling. Helen Stringer, young carers support co-ordinator for Imago Community, runs groups in Kent. She says, ‘A lot of the young carers say they enjoy attending the groups as it helps them to know they are not alone and that there are others in a similar situation.’
Stringer adds that children will confide that they feel left out a lot of the time and don’t get as much attention as they’d like from their parents. It can be difficult having friends over – ‘they get embarrassed at times if their sibling is having a meltdown, and they worry about how others see them. Some feel they are targeted by bullies because their family is different.’
School work can suffer because disruption at home can make it hard to sleep or concentrate, or because the cared-for child’s routines leave parents with no time to help. Stringer advises making school aware of the situation and asking them to provide someone for children to talk to if needed, and to ensure that staff allow extra time for homework when required.
‘I am working to get all schools on board in knowing how to identify the hidden young carers as a lot of them don’t realise that children with siblings with SEND are eligible for support from projects like Kent Young Carers,’ Stringer says.
Parents too are often unaware that their children can qualify for this support. ‘I initially felt embarrassed to apply – when you fill in the form it asks things like how often your child has to do the family shopping or laundry. My children do none of that,’ says Jo Knowles, whose eldest of three Matthew has learning disabilities. ‘But I wanted them to have the support of others in the same boat, and be able to talk about things they might think would upset me. In the group my children joined about 90 per cent had a sibling with special needs rather than a parent they care for.’
Knowles says time has shown she needn’t have fretted as much as she did about their family situation. ‘I worried a lot about the impact on my other children of constantly having to come second to their brother’s needs. A psychologist told me that the evidence was that these children frequently went into caring professions and had high levels of empathy and tended to be all round very sorted people. I can now see that in my other sons. They have become politically engaged about the injustice of all the battling that families with a SEN child have to do; one has proved to be a really good and supportive friend to an autistic boy in his class, and the other has stood up for a boy with learning difficulties who was being bullied on the bus.’
Knowles also worried needlessly about the younger child having to take on more responsibility and in effect become the eldest child. Her middle son Luke told us, ‘I was very happy to be the biggest brother.’ And this wasn’t the only benefit he recalls. ‘When I was younger Matthew played with me a lot more than I think he would have done if he was neurotypical.’
- Carers Trust – has a search feature where you can find support groups in your area
- Sibs – charity for siblings of disabled people
Matthew is ‘very sweet’ Luke says, and several other siblings volunteered what a nice person their brother or sister with special needs is; lovely and annoying in equal measure, just as siblings should be.
Do you have any experiences to share about how you ensure your children without special needs get enough attention? Share your views on Twitter or Facebook with the hashtag #chalkandchat
Getting help with an EHCP: The Good Schools Guide’s SEN consultants can talk you through the process of obtaining an EHCP, and direct you to solicitors and charities specialising in SEN law. Contact us at [email protected].