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Contents
Portage - All you need to know but did't like to ask
Open Days
Recent Papers
Most of this issue was devoted to the TSSS Submission to NICE this can be found elsewhere on the site, and to the TSSS annual conference which was held on 12-14 October 2001. Conference reports will follow in December 2001 ASPECTS.
All you need to know but didn't like to ask.
Hello. My name is Bev and I am a Senior Portage Home Visitor based in Hampshire. I was fortunate enough to have recently been invited to one of the TSSS open days [held in Gosport in June 2001] There I met Arlene and Lynne, the editor of ASPECTS, amongst others. Having spent a little time speaking to them I was asked to write a piece for the next issue of the TSSS newsletter. So, here it is...................
Portage. "What is that/what does it mean?" I hear some of you ask. " Does it mean carrying someone's cases for them at the train station?" No, not at all. I will try and explain what Portage is, where it originated from, why and how it has helped many, many families.
First of all, as many of you know, caring, rearing and teaching children is one of the most challenging and satisfying endeavours in which adults can participate. We engage in this life-long task with little preparation, knowledge or practice. Most of us do a fairly credible job of it, using trial and error, a book or two on the way, advice from friends and relatives and our memories of what was successful with us when we were children.
Most importantly, parents learn through the actual business of being a parent. The child's responses become their guide and however inexperienced parents may be, their unique opportunities to 'tune in' to the needs of their own child give them a developing confidence in their parenting role.
For those parents who have children with special needs or handicaps the challenge is even greater and their responsibilities more exacting. Support and assistance from within the family and from the community at large are the keys to facilitate the family's adjustment to the challenges to come.
A wide variety of self-help groups and professional services offer help to parents and young children as well as advice from Health Visitors etc. Despite the variety of help available, there are still some children whose needs are not wholly met by existing services. It was to help parents like these that the Portage Service was set up.
It is a home visiting service for families who have a child with special needs or a child who has delay in their general development. It is based on the principle that parents are the key figures in the care of and development of their child and our aim in Portage is to empower and enable the parents to be the main 'teachers' in their child's early education. It is mainly funded by the local education authority, although some Portage teams include workers funded by Health and Social Services.
Portage assesses the needs of each young child with special needs. A Portage checklist is used to make an assessment of the child's existing skills. However, delayed in development a child may be, the emphasis from the outset must be positive. Together the parent and the Portage Home Visitor will put together a profile of the child's skills using the checklist. The checklist is arranged into 5 major developmental areas: social, cognitive, language, self-help and motor skills.
The object of the exercise is for the teacher and parent to share information to identify target skills for future teaching. Knowledge of the child's existing progress is as important as an awareness of the child's needs and gives parents the opportunity of making a positive contribution to the first meeting. Many parents have reported that the Portage home visitor was the first person to be interested in what their child could do– everyone else seemed to be concerned only with problems.
Parents who enrol on the Portage scheme will receive regular visits from the same Home visitor at an agreed time. The Portage home visit is a very enjoyable experience. Its practical emphasis reassures the parent; its structure ensures successful teaching; its positive quality has a therapeutic effect.
The regularity of the visit also provides an opportunity for the development of a warm and close relationship between the family and the Home Visitor. For many families this element of the visit is as important as the teaching. Sharing concern for the child, their personal anxieties and their joys is a necessary experience for any parent. Portage parents are often isolated from these experiences because their child is seen as different. The role of the Home visitor allows these experiences to be shared, sometimes for the first time. As the child achieves success and the confidence of the family grows, they begin to share the belief in the ability of all children to enjoy and participate in the everyday experiences of childhood. The work carried out in the home is the beginning of this process.
It is important that the parents are able to say what they consider to be the most important priorities to them as a family. The parent and the Home visitor agree teaching objectives and linked activities to stimulate new development in the child. Each programme is tailored to meet the requirements of each individual child, in conjunction with programmes from other therapists involved with the family i.e physiotherapist, occupational therapist, speech and language therapist.
As I mentioned before, the emphasis is on the positive – finding and building on what a child can do. Each week's activities are designed to boost the child's development in those areas where help is needed – from very early motor skills to more complex tasks.
Each Portage visitor has a wide experience of working with families and children. They may be teachers, speech and occupational therapists, nursery nurses, health visitors, community nurses, social workers, parents or volunteers with relevant experience. Everyone involved in providing or managing a service is specially trained in Portage methods.
The Portage service was originally set up in the early 1970's in Wisconsin, USA in an area called Portage. It then came over to England and the first service was set up in Winchester in 1976. The scheme was different from other educational services for young children.
Instead of taking children to the service, the service was brought to the children and their families in their own home. The home becoming the setting for the teaching and the parents became the teachers.
Portage has an open referral system, so anyone can refer if they have concerns about their child's development. You can contact Portage at the main UK office on 01935 471641. They can then give you a direct telephone number for a service in your area. Or, if you prefer, you can discuss Portage with Doctor, Health Visitor, Therapist or Specialist who will refer a child on your behalf. The younger the child is when he or she is referred to Portage the better. Children receiving the service are usually aged between six months and three years old, but they can be referred from birth.
I myself started as a Home Visitor in 1990 and I was introduced to Hannah and her parents Lyn and Mark in May 2000. Lyn, Mark, Hannah and her older sister Jessica were extremely welcoming and have been consistently enthusiastic and committed to Portage, carrying out each week's activities without fail. The progress made by Hannah in her general development has been substantial. She has gone from a quiet, introverted and shy little girls to a confident, sociable young lady who has amazed us continually with her own enthusiasm to take on board the task we present her with, often saying, "More work Bev!" or "What else in the bag Bev?"
She had Lyn and me in constant giggles with her bubbly infectious personality. Each task was set in a fun way, making it feel it was 'fun' without Hannah realising we were teaching her some very important concepts in her development, to encourage her knowledge and independence. Yes, she had her off days, as we all do, but she would bounce back very quickly. The relationship built up between Hannah's parents and myself is paramount and an excellent partnership has been built involving total respect for each other's knowledge and opinions. Trust within this partnership is also one of the most important aspects and once the trust is there, along with the respect, there is no holding back on what you, as a small team, can achieve to help each child reach their own potential.
Carrying of goods between 2 navigable waters, place at which this is necessary, 'act of carrying'.
As one mum called Jan Lloyd [author of Jacobs Ladder] once said about Portage:
"It conjures up a picture of boats being carried along the shore because of the rapids in the river itself. To take the analogy further, we parents of special needs children are all in the same boat and are so often left to paddle our own course. But shooting the rapids is fraught with danger and disaster. How much better to be carried along a parallel way and to reach the end of the journey secure. To those who do the carrying, we can only say 'thank you'."
[Ed's note: On behalf of members, I can only echo that thank you to Bev for this interesting and informative insight into Portage. I am sure that a great many of you are now much wiser about Portage and are, even now, on the telephone trying to organise it for your daughter.]
Carol from the Endocrine Department at Addenbrooke's Hospital writes
Greetings from Cambridge
We had a really great meeting here on Saturday June 30th with members and their families attending. I was amazed that people had travelled the length and breadth of the country to come. What a super bunch of people you all are, it was like a family reunion and I felt very privileged to be amongst you. It was great to meet and hear of all the things you are doing for the Society and share what you are doing in your lives. It was a pity not more Cambridge members were able to attend but we hope to have a rerun next year when I hope more of those local to Cambridge will turn out. There is a lot of enthusiasm out there and we really need to get the Cambridge group on the map [ so to speak ] with Lorna help we can do this. I enjoyed myself so much that I have asked if I can come to Blackpool to the Conference, hope to see you all in there to catch up with all your news and meet up with you again. Best wishes Carol
[Ed's note:- More Open Days will be organised for 2002. Requests for Open Days in Belfast and Cambridge have already been made. Do let us know if you would like an Open Day in your area and if you would like it to have a theme. We will do our best to set one up just let us know you would like one.]
JC&M Vol.86 No 5 p1936-1641 Reiter et al
"Early initiation of Growth hormone Treatment Allows Age-Appropriate Estrogen Use in Turner syndrome"
This paper was quoted in the TSSS NICE submission. Here one or two of the issues raised in it are highlighted.
Growth Hormone given early, age2-10 gives much better results for final height than when delayed.
This allows for age appropriate oestrogen to allow girls with TS to go through puberty with their peer group. This is without having any serious effect on final height.
A major criticism is that at no point is the type of oestrogen described or it's dose and the speed with which it is increased to bring on puberty. This seems to be a defect in the programme, which could be affecting final height considerably.
The big advantage of early GH is that if the TS woman is going to menstruate spontaneously then she has still had the benefit of several years treatment before her ovaries start to release oestrogen hormones in any quantity which would normally close the epiphyses early, with little further growth."
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