Respite care can give all family members the break they need
When your “perfect” bundle is diagnosed with a disability or special educational need, life suddenly takes a different turn. You find yourself on a road you didn’t expect to take, one that’s unfamiliar and frightening. You need time to come to terms with the diagnosis, and you need people around you to answer all your questions.
I still remember my beautiful baby boy being diagnosed at 23 months with ASD, just before I was told that the service was now off on holiday for the summer. I was given a leaflet about ASD as I contemplated six weeks without support, six weeks wondering what will happen next. It was the most terrifying time of my life. I remember looking at my son and saying “what are we going to do?”
A break for everyone
Good respite care not only provides the child concerned with support and a safe space to play and have fun, it also provides much needed support for all the family. Good respite care providers look at the family as a whole, including all children. Providers can offer a place for parents and children to join other families travelling the same road and give them space to talk, laugh and share experiences and achievements together. They can also help each other through the hard times and provide a shoulder to cry on in times of need.
When a child is diagnosed with SEN, the diagnosis is often all people can fix on. The reality of how many changes are required to facilitate something approaching family life is often inconceivable to those who have not been through this painful process. However good a parent may be, everyone needs the chance to sit without speaking, to go out without having to turn full circle to make sure their child hasn’t run away, and to watch a whole movie without having to apply ear muffs at specific times. Having an occasional break from all this enables you to be a better parent. Children without SEN or disabilities are hard work enough, but when you suddenly have to juggle bringing up a family with the extra and specific demands of a child with SEN, life can become totally overwhelming.
Respite care should be available to all families who wish to use it at an affordable cost. No-one, no matter how resourceful they are, can keep going indefinitely. When you have a child with sleep issues and you are attempting to function on limited resources, disaster is imminent. Tempers are frayed and tears are shed. This is when a family can become isolated, as parents give up going out because life is too hard and the difficulties too extreme to contemplate.
As the Manager of a respite facility and also the mother of a 12-year-old with ASD, chronic bowel disorder, chronic sleep disorder and hypermobility, I have seen first-hand many of the difficulties and restrictions of living with someone with SEN, and what a devastating effect it can have on the family. I remember constantly asking my daughter to “wait” while I dealt with my son, and then realising that I never got back to her; sometimes, she had to make do with very little of my time.
This illustrates another reason why respite care is so important to the family; it gives other siblings a chance to be heard without being told to wait. To have uninterrupted time with their parents is something that many children take for granted but, with the best will in the world, this can be almost impossible to achieve if parents are constantly having to meet the needs and demands of just one of their children.
Planning for respite
When I introduce a new family into respite, I sit at length with the family and gather as much information as possible, in order to make the transition as smooth as it can be. It is important to remember that, although they need the break and want to spend time with their other children, parents may still have a sense of guilt about placing their child into respite.
The child’s support must be carefully planned to ensure that all his/her difficulties and needs are fully considered and accommodated. It is important to have good communication with parents to ensure that any necessary changes are implemented without concern. It may be appropriate to bring in extra staff to help with more challenging children.
As well as addressing the individual needs of the child who will be attending respite, one should look also at how the child will relate to others attending the facility – will they have things in common? Will they get on with each other? What potential issues or situations might occur and how can these be anticipated and dealt with in advance?
Liaison with the child’s school or nursery will enable the respite provider to include things in the child’s day which are challenging for them, so that the child can practice skills and continue with his/her development. While activities should be enjoyable for the child, they should also be geared towards encouraging independence, socialising, life skills and physical abilities. Life skills development can be built into daily routines and, by working closely with parents, respite providers can address these key areas of learning.
It may be appropriate for respite providers to attend pre- or post-respite meetings with other professionals or at the child’s home. A written report of the child’s progress at respite can also provide useful information for all those involved.
Respite care should provide a safe space for children with SEN to enjoy while their families have a well deserved break. Happy children progress; they are more stable and more able to function. In addition, a family that is also happy and relaxed, because it has reaped the rewards of respite care, will be able to enjoy that child’s achievements all the more readily.
Zoe Hall has worked in nursery management for 20 years and she currently runs Rakemark Respite in Uttoxeter. She is also mother to a 12-year-old child with autism: