Bright Start: Shining example of a support service for the disabled
Three women sit around the table in the kitchen nursing coffee cups and chatting while the sounds of children's songs drift in from the nursery next door. This could be mistaken for any old chin wag among relatively new mums, but this weekly get-together is far more significant than that. In fact, you could say this is therapy.
These meetings stop the challenges of daily life from becoming overwhelming as each woman wrestles to get to grips with caring for a child with additional support needs.
Today they are discussing sleep and their lack of it. Termina was up every hour throughout the night with her son, Saif, who recently turned one. But everyone agrees that Claudia, coping with a disabled child and two other children under five, should be awarded some kind of "top mum" gong.
Still, not coming to Bright Start this morning would have been unthinkable. Hospital appointments, visits from relatives and friends - everything is put on hold so they can make it here, they agree.
"If anybody asks me if I can come on Tuesday I say: `Don't even think about it'," confesses Termina with a smile.
Bright Start is run by Edinburgh's Visiting Teaching and Support Services (VTSS) which is responsible for supporting disabled children and their families at home and in nurseries and schools. Youngsters with severe and complex needs is just one area of expertise. They also have teams responsible for working with the visually impaired, the hearing impaired, children with communications problems, autism and behavioural problems.
"We have a massive amount of expertise here and, with us all being under the same roof, we can tap into each others skills," says Alison Garbett, who has headed up VTSS since it was established in 1996.
The service is staffed not just by teachers but also by nursery nurses, learning assistants, support staff, occupational therapists and a speech and language therapist. VTSS adapts materials, reproducing them in Braille and large print; it can supply new technological adaptations and magnifying glasses. It also has a subtitling service that adapts materials for deaf children.
VTSS sees children from diagnosis, which can mean when they are as young as a few weeks old. Support thereafter is dependant on whether or not the family wants it and how great the need is.
"We work with families to help them understand what's going on but also to help them encourage play skills and communication skills," says Ms Garbett. "We are not counsellors, but we are an ear and we can direct families to voluntary and charitable services which provide that kind of support."
At any one time, the service has roughly 600 children on its books, with about 250 under the age of five.
"We may work with a family quite intensively at the beginning and then the support dips off after that," says Ms Garbett. "Although we are around forever, we don't see the child as often because we have skilled up nursery or school staff to support them. We do a massive amount of CPD. Our raison d'etre is to give away our knowledge."
The only part of the VTSS service that Termina and Dawn access is the Bright Start nursery. Claudia, however, also receives a fortnightly home visit from a teacher.
Pre-natal screening gave no indication that their children were anything other than perfectly healthy. So when Claudia's son Christian was born, she had no idea that he would become one of only 50 children in the world to suffer from DOOR (Deafness, Onychdystrophy, Osteodystrophy, and Mental Retardation) syndrome which means he requires the highest level of support.
"They don't know how to treat him," Claudia says. "It's about supporting his needs in the moment."
Similarly, Dawn had no inclination that her daughter Millie would be diagnosed with leber's congenital amaurosis, an inherited eye disease from which one in 8,000 children suffer. At first, doctors thought Millie was totally blind but Dawn suspects she might have some sight. At 18 months, however, securing Millie's co-operation to run the necessary tests is challenging.
As for Termina's son Saif, he has been diagnosed with microcephalitis. The circumference of his head is smaller than it should be, she explains, with the result that the brain is not forming properly.
Termina says: "It takes a long time to come to terms with. I don't know if I ever will. You think you have this perfect child. His arms are fine; his legs are fine, but then you are hit with this bombshell."
Dawn adds: "Millie walks and she sings, but I still long for the day she is able to look at her mummy. I wouldn't change her for the world though. She's magic."
The next hurdle for the mums will be securing a nursery place. Termina will need some place for Saif from July when she returns to work, while Dawn will be looking to register Millie for a nursery place in June when she turns three.
So far, Termina has struggled to find anything suitable. "I don't think the provision is out there for special needs children, certainly not as I would like it to be," she says.
Transitions are always scary but VTSS is there to help, says Lynn Lymer, who runs the Bright Start playgroup and is a visiting teacher for the visually impaired.
While they become more hands off as children get older, times of change are when they tend to emerge from the shadows, adds Ms Garbett.
VTSS staff, therefore, go wherever the children are and make sure staff are trained and supported to cope. "We don't have any knowledge that can't be shared with other people," says Ms Lymer.
The number of visits they make is dependant on the staff and their expertise. "Some places you know if you give advice and come back in a fortnight, they will have followed it and it will be fine," says Ms Lymer. "Other places you think, you had better come back more often."
HELP IS AT HAND
- Barbara Henry and Sue Dible, occupational therapists, autism team
Barbara and Sue work with autistic children in the home, in pre-school, primary and secondary. Their job is to help them to be independent and engage in the environment they are placed in.
Autistic children's sensory processing is different from other children, they explain. A background hum, for instance, might be impossible for them to tune out of. Barbara and Sue work out strategies to help them cope and also introduce methods to deal with other common problems, such as the need many autistic children have to be in constant motion.
This could mean giving them a fidget toy and movement breaks or encouraging teachers to choose that particular child to go to the office or to run an errand more frequently. Where necessary, they also introduce programmes to develop youngsters' fine and gross motor skills, eg, developing hand strength.
Visits to the family home take place to ensure support is consistent and because autistic children's behaviour can be quite different in different settings. Sue says: "Often it's about structure and routine and helping the family to be more organised. Sometimes things like dressing skills are not being developed, so we look at structured approaches they can take towards making the child more independent."
- Nicki Gilchrist, nursery nurse, challenging behaviour team
Nicki works with teaching staff and parents in supporting children up to P5 who demonstrate challenging behaviour as a result of an additional support need. Over half the children the challenging behaviour team work with are autistic.
Nicki says: "My job is to model how you work with the child so that the school or family can take that on board, but I'm not there as a one-to-one support. This is a short-term service; we will not be there for the rest of the child's nursery or school career."
Nicki might introduce visual timetable or visual rules or develop behaviour programmes to tackle specific problems. One child was having difficultly in the playground because it was such a vast area. The area he played in was reduced and a buddy assigned to support him. He was also brought in five minutes before the bell so he didn't have to cope with jostling at lining up time.
- Lynn Lymer, visiting teacher, visual impairment team
Lynn provides support for families and in-service training and advice for school staff so that children with a visual impairment are able to access the curriculum. She also teaches the individual skills children need to function in the classroom, such as reading Braille, and ensures there is someone in the school who is trained to support the child.
"Where children need adapted materials like Braille and large print, I do a lot of encouraging of departments or classroom teachers to submit the materials so they can be adapted in good time."
She works with children from birth to 18 years and has roughly 30 children who she has frequent contact with.
- Rod Beaver and Mary Matson, resource co-ordinators, visual impairment team
Rod and Mary adapt materials for children with a visual impairment into large print or Braille. They also create tactile diagrams for young children and reproduce diagrams, maps and timelines that are poorly printed or too small.
Texts for English lessons, such as novels, can be converted into Braille using a computer translation program with relative ease, but if a French or maths textbook has to be converted it's a more time-consuming process and careful editing is required to ensure no mistakes get through.
To convert one unit of a French S2 textbook into Braille would take around four days, estimates Mary. Meanwhile, to convert an entire S5 maths textbook into large print would take around six months, says Rod.
The end products are very bulky. Rod remembers converting the novel The Indian in the Cupboard into large print; the finished product covered 1,800 pages, printed on both sides.
- Emily Renner, principal teacher, pre-school home visiting team
The pre-school home visiting team has an enormous knowledge of the way in which young children develop and acquire language.
They see children with a wide range of problems, often before they are diagnosed and referred on to one of the specialist teams within VTSS. For instance, they might work with a child with Down's Syndrome or a child with poor acquisition of language and idiosyncratic behaviour.
What the child cannot do tends to be obvious, says Emily, so it is up to them to focus on what they can do.
Equipped with a bag brimful of educational toys, she works in the home with babies, infants and young children alongside their parents. Each visit lasts about an hour and an educational programme is put together for the child.
Emily also links with any professionals involved with the child.