Son Rise - an Alternative, Parent-Driven Therapy for Children with AS
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Tina Lockett and Martha Sprowles
The Programme Committee had hoped that a parent who was using an alternative therapy programme would be able to make a presentation, but none of the parents who responded to our request was able to attend the conference. Because the programme Tina Lockett described using with her daughter, Abbie, was similar in philosophy to one my husband and I used with our son for depression, I offered to co-write and to present Tina's report. One thing that shines through in Tina's report is her joy in being able to do something to help her child. I think that many of us are sad and frustrated because we don't know what to do with our children outside of school; Tina found a way to channel her feelings into work with Abbie that has, I think, benefited them both.
I have reservations about the time and money involved in this program, but I will save those remarks for the end of the presentation. Here is Tina's story:
Tina's daughter, Abbie, was two years old and undiagnosed when Tina undertook her journey. Tina and her husband, Steve, had been aware for some time that Abbie had special needs, but they had not been able to find anyone or anything that seemed to work to help their daughter. A friend told Tina about the Options Institute, in Massachusetts, USA, and their "Son-Rise" programme, and Tina sent away for information. She learned that there would be a weeklong training course in England in only a few days, so she signed up, paying 800 pounds for the course.
After her week's training (during which her family were sure she was being inducted into a cult of some kind) she came home to try to set up the programme for Abbie. "Son-Rise" is parent-directed, child-driven and home-centered. Parent-directed because it is based on unconditional love for the child; child-driven because it relies on the child to show us what to do; and home-centered because each child must have a custom-designed workspace which would not do for any other child.
Because Tina wanted Abbie to work for hours every day, she had to recruit helpers from her family and from a local college. Abbie spends six hours a day in her room, working. Tina trained the helpers before they began and slowly introduced them to Abbie. Meanwhile, a carpenter helped get the room ready with a two-way mirror panel in the door (so that Abbie's progress and the helpers' behavior can be monitored), and the room was prepared with shelves for toys, a mirror, a slide, a big ball and a trampoline.
The basis of the program is accepting the child and her behaviors, no matter how "difficult" they are. If Abbie wants to flap until her arms fall off, her helpers flap along with her, joining in the fun. If she wants to bounce, everyone bounces, laughing and singing all the while. Abbie receives nothing but positive feedback for her every action, and this encourages her to try new feats. When she made a raspberry in response to b-b-b-b from a helper, everyone began to blow raspberries and to sing "B" songs. Soon Abbie's raspberry turned into a less-juicy noise, finally becoming ba-ba-ba, a meaningful sound for her. Because there is no pressure to perform and because every effort is greeted with praise, Abbie is motivated to try and do things all the time-because she wants to.
If Abbie does something we don't like-pulling hair, for instance, we give her no attention for that, but we show her how a gentle touch pleases us and gains her praise. She very rarely demonstrates any "negative" behaviors any more.
Motivation is a great teaching tool and because Abbie is always having such a good time and is in charge she loves being in her room. I was also taught ideas for encouraging eye contact, language skills, social skills and much more, but I cannot stress enough how important the attitude of everyone who works with Abbie is. If a volunteer is unhappy about some aspect of Abbie's behaviour Abbie will pick up on it and feel as
uncomfortable with the volunteer as the volunteer feels with Abbie. You cannot pretend to feel happy or non judgmental as it just won't work. It's got to really come from the heart. It took us a long time to get our heads around the importance of this and also to admit to ourselves that we had problems with accepting the way Abbie was, but once we acknowledged that, we were on the road to acceptance.
Although it took along time and is something we are constantly working on, it has had a big effect on our lives in general as well as helping our programme. We feel comfortable at last with Angelman syndrome; we laugh far more than we used to and have such a lot of fun. I still have worries about the future, but each day is lived for moment by moment and is far more precious then it ever was before.
When we started, Abbie's skills were as follows (This information is from an official developmental assessment report):
Language
Abbie has no complex babble and will only say mama. She knows her own name and will shake her head for no, she was rather too interested in mouthing objects and she does not point or vocalise. Her age equivalent was put at 11m.
Motor skills
Abbie is able to take a few independent steps and will coast around the furniture. Her age equivalent was put at 13m.
Personal skills
Abbie plays simple interactive games and waves bye-bye. She will put a loaded spoon to her mouth and can tip juice from a closed cup into her mouth. Her age equivalent was put at 14m.
Eye and hand
Abbie has very poor skills in this section, she was able to push a car but not to roll a ball. She touched a pencil to paper and pulled a cloth to reach a toy. Age equivalent was put at 12m
General performance
Abbie was not interested in the toys and preferred to mouth them. Age equivalent was put at 11m.
Overall Abbie's age equivalent was put at 12 and one-quarter months. When the tests were repeated at the age of 3years and 3m and the results were as follows:
- Language: Age equivalent 18m.
- Motor: Age equivalent 19m
- Personal skills: Age equivalent 24m
- Eye and Hand: Age equivalent 19m
- Performance: Age equivalent 15m
- Abbie's overall Age equivalent was put at 19m
I believe she would not have made so much progress without the programme. Here is what we have been working on in each area:
Language.
This has been the main focus of our programme for obvious reasons!! Abbie has said over 80 words since we began. The large majority of them have been said once and never repeated, which I find difficult to understand and which is in fact a question I have put forward to ask at the conference. However, I strongly believe if she has said them once she will say them again.
Note by Martha: As has been discussed on the AS listserv, saying a word once only is a common phenomenon in Angelman Syndrome. Tina's report of eighty words in a one-year period, however, is something I find worthy of attention. I do not know of any other AS child who has spoken so many words, only once.
Abbie currently has 35 words that she uses consistently. Some of her words are very similar in sound but all have a distinction when spoken and are said appropriately. A lot of them would be hard for people outside of the family to understand, but for us it is an excellent beginning, and we are working on improving her words so they can be understood by everyone. For example, when I undress Abbie in the evening she will ask me for 'a ba' to indicate that she would like a bath. Easy for us to understand, but not so for others; therefore we are working on the end sound of bath to make things clearer.
Abbie also has around 16 signs which when combined with the language gives her a great opportunity to 'talk' to us.
Motor Skills
Abbie walks independently all of the time but will stop to re balance herself often. She also walks backwards and round in circles when asked to and thinks this is hysterical!! She jumps for hours on her small trampoline and we are now working on hopping. She walks upstairs independently using the banisters and will walk down holding our hands.
Personal skills
Abbie is now a very social child and loves to interact and play. Her eye contact is excellent which has helped her concentration, and she will now play games for up to 20 minutes. She loves books and songs and she will play out all of the hand actions to lots of songs, her favorite being 'Wheels on the Bus.' She has a great imagination and will happily feed her chair pretend sugar lumps taken from her pocket, give the chair a stoke and then go for a ride on it. When she has finished she puts the chair in the stable for the night. When the chair is no longer Abbie's horse she understands that it becomes a chair again! Because Abbie is in charge of what happens in the room she is a totally willing participant which gives her reason to concentrate and enjoy. Abbie has learnt lots of basic concepts, such as 'up and down, in and out, open and close, behind and in front, and this helps her in many areas.
Abbie is now able to feed herself with a little help from us and will use a spoon and a fork depending on what she is eating, although everything within a couple of feet gets a taste! She drinks very well from a cup or using a straw and is just starting to use an open cup without getting drenched every time.
It helps greatly to use a room where you can be relaxed about the mess and slowly but surely the mess becomes less and less.
As far as fine motor skills are concerned, Abbie is now able to paint and scribble, but this is definitely her weakest area and also of least interest to her.
In general, Abbie has improved beyond belief, and she does new things all of the time. A lot of the time her steps are small ones but so magical to see. She was evaluated by an educational psychologist at 39months and had the age equivalent of 19m and an IQ of 48, so no rocket scientist yet but we are getting there!
We have changed our way of living completely to accommodate this programme, and if I said it had been easy I would be lying. It has taken us nearly two years for the programme to become a 'normal' way of life for us all. We have completely 'Abbie proofed' our house to make it safe for her to have the freedom to live in the house as any other child would. Her bedroom is bare except for her bed and toys. Understandably the programme wears her out so another bonus is that Abbie is in bed by 7pm and gets up at around 7am.
We now have a solid team of workers who have been with us from the beginning. We work 6 hours a day for 5 days a week. We get together every few weeks for a team meeting to discuss what specific areas we will be working on and this enables the programme to continue to move forward. We also have hippotherapy and hydrotherapy and the support of all of the other available therapies when we need them. If I need advice from the speech therapist or the occupational therapist then they kindly come to our house and help out, so in that respect we are very lucky.
As far as we know we are the only AS family to have done the programme, so I am unable to give you any comparisons with another family, but to be honest that's not the point. The point is that no matter what is wrong with your child or how severe you think there problems may be, there is always progress that can be made. It's just a case of the way in which you choose to do it. We have chosen the Son-Rise programme at this time and it has been good for us.
We wouldn't swap our lives for anything now, and we are all finally happy and at peace with Abbie.
I love Tina's expression, "at peace with Abbie." The acceptance of her child's limitations and the celebration of her abilities is wonderful to hear about, and something I hope we all can achieve.
Further, it is my amateur opinion that, in addition to Abbie's cognitive gains, important psychological changes have occurred, too. I think Abbie is probably less frustrated and depressed, if only because she knows that the people who are important to her accept her and are on her side. That has to be a good feeling for anyone!
While I believe the hours Tina and her helpers spend working with Abbie every day, not to mention the initial expenses involved in becoming part of this particular program, are well beyond the abilities of most of us, I think the notion of accepting our children as they are this very minute, not as they might be or as we wish them to be, is something we all could benefit from. I think both Tina's program and the one we used are artificial in their approach-parents must follow specific guidelines in how we behave toward our children-but I also think this "training" of our responses can lead-and lead to our surprise-to genuine, heartfelt acceptance.
Those of us who fret about what to do for and with our children when they are not in a formal program of school or therapy might do well to try a variation of this approach. Even those of us not willing or able to attend a course could set aside a place at home where we won't cringe if the clay is ground into the carpet or the bop-bag is punctured and take an hour, or half an hour, once a week to devote ourselves to working on accepting our children. Being in a situation where nothing is allowed to be wrong might even do us stressed-out parents some good!
A couple of notes, I hope anticipating questions: Abbie does not have a deletion; and the address for the Son-Rise Programme is:
The Options Institute, The Son-Rise Programme - 2080 South Undermountain Road Sheffield MA USA 01257-9643 Tel:(413) 229 2100 - Email: sonrise@options.org
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