Both parents were very concerned as they had a long wait for services but were following a physiotherapy programme set out by the therapist at the Bobath Centre.
KIDS Home Learning is a Portage service for the City of Westminster, visiting approximately 50 families a week.
KIDS is a national charity for families with a child with a disability.
Kim was referred to KIDS by an outreach worker at 18months of age. She had a diagnosis of hypotonia and had been seen by the Bobath Centre (for children with cerebral palsy) in London.
Both parents were very concerned as they had a long wait for services but were following a physiotherapy programme set out by the therapist at the Bobath.Centre.
- We started by completing the Portage Checklist and familiarising ourselves with the physio programme. We also spent some weeks getting to know Kim, her likes and dislikes and the families wishes and concerns.
- Over the year we worked with Kim we became more and more convinced that we were looking at a child with an underlying condition that had not been diagnosed. Within supervision meetings, autism was suggested but although I could see why this was a possibility, it did not feel quite right.
- We continued to set long term goals for Kim and she was succeeding in meeting these goals within 2/3 months.
Example of long term goals (LTG) set
LTG 1: Kim will walk from the lounge to the bedroom with adult supporting her by holding one arm at shoulder height.
LTG 2: Kim will make a choice between two objects by reaching out and making a sound.
LTG 3: Kim will choose her snack from two pieces of food by reaching out and making a sound.
Try to have a small set of goals - maybe one from each professional working with the child. If you have too many, they won’t get done.
Small Steps towards Long Term Goal 1
- We worked on walking by gradually removing the physical help she had to get to the bedroom until Kim was able to get around the flat using her hands to support herself against the wall.
- We set up activities on the sofa for her to stand alone and play with a toy. Then we began moving the toy along the sofa to encourage her to side step along to reach & continue playing with the toy.
- Kim began to push away from the sofa and stand independently. We then changed the game to leaning with her back to the sofa and reaching out to mum or dad - moving them back a tiny amount over the weeks until Kim was taking 2/3 steps to get to them.
- At this point, Kim sat down and refused to stand and walk unless she had support to both arms. She would just cry and get very upset.
- We decided to have a rest from this activity and allow her to work at a lower level to that of her ability to consolidate her new skills, feel confident and relaxed.
Small Steps towards Long Term Goals 2 and 3
- In the mean time we had achieved good choosing of snack food. Kim is a good eater of fruit and was very motivated to choose. She was less motivated by the toy choices offered.
- At this time I noticed that after a period of infection, Kim developed a new behaviour. She seemed to be often putting her hands in her mouth or wringing them. She still put her hand out for desired food but was not interested in toys or objects.
- We introduced the idea of using pictures, as Kim seemed to like to look at pictures and had remained interested in her books. Kim also liked the “What’s in the Bag” game, used at the Westminster Portage Service developmental play sessions. She liked to post her picture from the bag into the letter box when we had sung her chosen rhyme.
- We started using PECS (Picture Exchange Communication System) cards. As the hand wringing tended to get in the way of holding and exchanging a card, we decided to work on eye pointing at the card rather than physically exchanging. Given a choice of two cards, Kim can eye point to a chosen song or activity. She can also eye point to an animal on her table when she takes a picture from the bag of the same animal and she can match animal to animal by eye pointing using the same bag game.
- Kim had input from a physiotherapist to support with her gross motor skills as well as speech therapy.
- When we started using PECS pictures, the speech therapist initially felt it would be better to try Makaton signing. We started to introduce signing & invited mum to a Makaton workshop. We signed often with Kim but she never signed back.
- Kim’s speech therapist has also suggested PECS as a way forward.
- It has been challenging; when you are the first to realise a child has Rett’s Syndrome but you are not able to diagnose. We needed to steer parents away from their first diagnosis and set the seeds for a different disability.
- Other professionals started to refer to Kim as autistic and this was very upsetting for parents. Portage workers built up a trusting relationship and we were able to discuss parents’ concerns as they became more worried.
- I was able to talk to the paediatrician, share my concerns and arrange an appointment. However, before the appointment, Kim’s parents looked on the internet and asked me if I thought Kim had Rett’s Syndrome. We looked at what this could mean and prepared questions to ask the paediatrician.
- Kim is now a confident walker and particularly enjoys walking outside rather than being in her buggy.
- Kim has had an assessment for a computer package using her eye pointing skills.
- Mum has been on a Portage Basic Workshop training course.
- Mum volunteers at a Portage play session
- Both parents are confident in their teaching of Kim and feel empowered to ask for the schooling placement they want for her.
- Kim has settled with a child minder.
- The Portage worker now feels more confident that when you feel a child’s behaviour /learning does not match the disability, with care and honesty you can work though difficult news and times and stay with the family.
- Kim now attends the child minder for 4 days a week and so Portage has gradually come to an end whilst we supported the placement to become established.
- The child minder has shown skills and a willingness to listen carefully to the parents and the Portage worker about activities to meet Kim’s needs.
- Plan to invite the child minder to attend a Portage Basic Workshop to support her interest in child minding for other children with a disability.