SonRise on template UD.pdf

The Son-Rise Program (including information on LEA funding)

By Karenza Cassidy, EddieÓs mum (22 September 2008)

Eddie developed at the normal rate, with speech, eye contact, interactions etc., until he reached 14

months of age, at which point he started to regress, gradually loosing speech, eye contact and any

interaction at all.

He had an uncontrollable fever and an obvious reaction to the MMR vaccination. By the time he was

two years old, he had no vocabulary. He also suffered with recurring tonsillitis so I took him to the

doctor, who assured me that it was very common that Eddie wasn't talking and that it was probably

because he had a sore throat! So he was put on yet another course of antibiotics and I was advised

to relax.

As an experienced mum of two children already, I asked to be put on the waiting list for a

developmental check. They tested his hearing first and suggested he wasn't talking because he was

deaf, but I explained that he could hear crisp and chocolate wrappers from the other side of the

house! Finally at the age of two years three months his test results in Hong Kong showed signs of

autistic features. More tests followed over the next few years as he continued to regress, then at the

age of five, he was diagnosed with autism again in the UK.

Like a lot of parents of children affected by ASD I felt lost. I was sure that there was a good reason

as to why this was happening to our family, but I couldn't make any sense of it. The worst part was

knowing that Eddie was physically perfect, in fact, he was a very beautiful child, but knowing that he

might never connect in a meaningful way with me or his brothers and sister was very tough.

After the diagnosis there was nothing in terms of support from the professionals. It's a matter of

researching and reading and taking the initiative yourself, which is hard work when you're still trying to

come to terms with the whole thing. EddieÓs father was in denial for sometime after the diagnosis, not

believing that his son was autistic, so I felt very alone. A couple of months after the diagnosis given

in Hong Kong, when Eddie was just over two, Henry, my eldest son, who was five at the time told me

that he felt like his "brother had diedÑ. This was probably my lowest point.

Initially, I decided to home-school Eddie. Realising that he was a strong visual learner, I set up a

workstation with visual aids and we played at encouraging him to look and talk. This seemed to work

very well, but a major upset was just around the corner and one that would affect all our lives

dramatically. We were living in Hong Kong at the time as my husband was working in an international

school. I discovered that he was having an affair and it was this which eventually led to me moving

back to the UK with all four children. The demands of looking after my family alone were huge so I

immediately began looking for educational provisions to meet Eddie's needs, as I thought it was

impossible to teach him myself at home as well as caring for the other three children.

Eddie was placed in a specialist unit for autistic children in Clase Primary Swansea and this is when

his behavior seemed to worsen. He began waking up three to four times every night, head banging

everything and attacking his siblings. His eye contact and speech disappeared yet again and he had

to be escorted to school every day in a taxi. One morning he locked the escort and the taxi driver out

of the cab.

This document is the intellectual property of the author and may be shared only if left unaltered and in its

entirety with credit given.

The final straw came when one day when I visited his teacher to discuss strategies. From her

approach and attitude, it was quite clear that she did not know how to deal with a very challenged

child and this started me on my quest to find a solution.

Some of the other mothers of autistic children I kept in touch with had been mentioning theyÓd seen

an American guy being interviewed about his organisation in the States and had been very impressed

with what he had to say and so I decided to look into it further. I kept looking at his website and one

day ordered a free information book. When it arrived, I read it through and was excited at some of

the ideas to try at home. So I tried them and realised that they were simple but effective.

I then called up for a free 25-minute consultation with the Autism Treatment Center of America (who

co-ordinate the Son-Rise Program) and was very impressed at their understanding and attitude to

autism. It was totally different from the usual "what a tragedy" or "just accept it and get on with your

life" approaches. I booked to take part in their initial Start-Up training in London in January 2005.

The week's training course enables you to effectively direct a full-time Son-Rise Program from your

house, including playroom skills, training volunteers, strategies to deal with difficult issues, etc.

I was so confident on leaving that I was going to change the course of Eddie's life that I took him out

of school immediately and just went for it! That was in February 2005. I had a team of 8-10

volunteers playing with Eddie one-to-one for 8-10 hours a day. It varies, but most of the volunteers

did between 6-10 hours every week with Eddie.

I recruited the volunteers from our local university, college, and schools and asked for people who

were open-minded, fun, and willing to commit to changing a little boyÓs life. I had already received the

training on the Son-Rise Start- Up on how to equip them with the necessary skills to work in the

therapy room with Eddie. I also booked for a Son-Rise Teacher to come and work with us in our

home environment, to offer full support and check that we were on the right track. Son-Rise offers

these Outreach Visits for two day periods, and they are incredibly useful to propel your program.

As with any home-therapy programme, there are obvious costs involved in training staff, paying for

training programmes, the running of the programme, and so I approached the Local Education

Authority with a proposal to divert the monies that were being spent on Eddie in school to our home-

schooling. The Local Education Panel met two weeks later and agreed to the plan!! I also fund-raised

privately to top up the funds; neighbours, local schools, and charities, stepped into raise funds and

this was incredibly uplifting.

Eddie has responded beautifully to his Son-Rise Program. He sleeps through the night, he's toilet

trained, he plays with us the majority of the time, he looks at us 6-8 times per minute and he's just

getting the hang of talking! It is wonderful to see him interacting and playing with his brothers and

sister and really trying to communicate with us.

The focus of the Son-Rise Program is the core communication skills: eye contact, interaction span,

participation, and flexibility. Below you will find my Proposal to my Local Education. I am happy for

anyone to use any of it to obtain funding for a home-based programme. It also gives a more detailed

explanation of some of the Son-Rise methods.

It should come as no surprise that I'm totally biased towards the Son-Rise Program as it has quite

literally changed our lives. We have turned around from being in a place of total desperation to

This document is the intellectual property of the author and may be shared only if left unaltered and in its

entirety with credit given.

having a positive to focus on in a personal time of grief and sadness. But mostly it has been a very

effective vehicle in helping Eddie realise the beauty of being with and interacting with other people.

We are selling Eddie the idea of communicating and we're having lots of fun in the process. I'm

certain that Eddie would not have developed in the great way he has over the past three years

without it.

Taking Eddie out of school was a big decision, but I think that one of the major factors for me was

that I, as his parent and the person who knows him the most, would be in charge of all aspects of his

development and growth. I should also mention that prior to this I had looked at other home therapy

programs, but didnÓt feel comfortable with some of the ABA (Applied Behavioral Analysis) type

programs.

It was very important to me to be deeply respectful of Eddie and move at a pace that he was

comfortable with and this is what I believe is the key element to the Son-Rise Program. It has taken

the guesswork out of educating him and I oversee all aspects of his progress, his self-help skills, his

diet, his sleep patterns and perhaps his most challenging areaÏsocial development.

If I had to give some simple advice that sums this whole thing up it would be this: we as parents are

the best equipped people to help our own children. No one loves our children as we do. Trust that

you have the determination and conviction to be your child's best resource.

PRESENTATION TO SWANSEA LEA

Introduction: The aim of this presentation is to state the case for receiving LEA funding to run the

Son-Rise programme (an Individual Educational Programme) at home for our son, Edward Cassidy,

who suffers from ASD (Autistic Spectrum Disorder)

The presentation will contain the following sections:

1. Case Background

2. Rationale for undertaking the programme

3. Justification for receiving LEA funding

4. Summary

5. Appendix: Programme Details

1. Case Background

Edward Cassidy is the third of four children and was born in the UK in 1999 moving to Hong Kong

when he was 6 months old. His development was quite normal until the age of about 14 months

when it was noticed by his parents that he began to withdraw and lose the language that he had

already acquired.

He began to exhibit self-stimulatory behaviour and indifference to communication and at the age of 2

years 3 months he was diagnosed as autistic. He started having sensory, speech, occupational and

play therapies in order to assist his development and he was taught how to use PECS (Picture Card

Exchange System).

Upon his return EdwardÓs ASD was confirmed and he was targeted to receive appropriate educational

This document is the intellectual property of the author and may be shared only if left unaltered and in its

entirety with credit given.

provision by Swansea LEA. In September 2004 he started attending the special autistic unit at Clase

Primary School.

Edward was recently removed from the special autistic unit at Clase Primary School and placed on

the Son-Rise programme, a home-based specialised therapy programme for the treatment of autism.

EdwardÓs mother, Karenza, attended a 50-hour training course to learn how to administer the initial

stages of the programme and is the principal therapist.

Organisation behind the programme:

The Son-Rise programme is delivered by the Option Institute from their Headquarters in America and

has been established for over 20 years. It was devised by a couple who had a severely autistic child

themselves, but refused to accept the medical wisdom of the day: that there was nothing that could

be done about his condition. Raun now shows no traces of autism; after three years of doing the

programme he became totally integrated into mainstream schooling and he even went on to graduate

from Brown University and now delivers lectures all over the world. The Option Institute is a

registered charity in the US.

2. Rationale for Undertaking the Programme

A) Results: Having spent the last four years researching treatments for autism, Karenza concluded

that the Son-Rise programme was the only approach that had actually delivered results and

consistently ÒcuredÓ the individualÓs autistic features. She spoke to many parents of formerly autistic

children who were so delighted with the progress of their children that they were now offering their

own time to help train families new to the programme.

B) Empirical evidence of Edward while at school: Since attending full-time school over the last five

months, EdwardÓs self-stimulatory behaviour showed a marked increase and his sleep patterns

became so erratic that he was disrupting the entire familyÓs sleep. He also started biting his siblings

and suffered from unpredictable mood swings. This has been attributed to the massive overload of

sensory information he was getting from the time he left the house at 8:30 until his return at 3:40.

The unpredictability of the environments experienced by Edward was a crucial factor in his worsening

behaviour: taxi to school with different drivers and different escorts, large open spaces, other children

and teachers, and being physically manipulated around school in order to complete everyday tasks.

All this resulted in Edward not being in control of his environment and he consequently began to

exhibit more extreme repetitive behaviours.

C) Empirical evidence since embarking upon the Son-Rise programme: Even though it has only been

running full-time for a month, the differences in his behaviour have been nothing short of miraculous.

His eye contact has improved tremendously, his repetitive behaviours have reduced by 50%, his

health is excellent, and his sleep patterns are getting back to normal.

3. Justification for LEA funding

A) Educational entitlement: The Son-Rise programme is an intensive, one to one, relationship-based

therapy programme, designed to normalise a childÓs behaviour. Local Education Authorities cannot

This document is the intellectual property of the author and may be shared only if left unaltered and in its

entirety with credit given.

possibly hope to match this level of individualised educational provision. All children are entitled to an

appropriate education and we have no doubt that the Son-Rise method will benefit Edward more than

any other programme.

B) Funding entitlement: Even as an average student, Edward will have an amount of money

allocated to him for his education annually. Since Edward has special needs, the money allocated to

provide suitable education for him will be quite considerable. This money should still be spent on

EdwardÓs education, even if the LEA is not directly involved in its administration.

C) Long Term Plan: It is expected that the programme will last from 2-4 years, after which time

Edward will no longer have special needs and will be able to join the mainstream schooling provision.

This will save the LEA approximately eight years of payments at the special need level.

D) Family Commitment: Tom has returned from Hong Kong, leaving his business interests, in order

to support the programmeÓs delivery. He plans to work an average of three days per week, spending

as much free time as possible in the playroom doing therapy with Edward. Karenza is the lead

facilitator in the programme and is responsible for the details of the programme, including the training

of all volunteer therapists.

E) Commitment to continuous training: The family is totally committed to investing in the training that

the Option Institute provides. Karenza went on the initial training course in January and she has

booked further intensive training sessions in October and December. In addition to these week-long

courses, we have scheduled bi-weekly phone consultations for the next three months and have

booked for a specialist to spend two days in the playroom with Edward doing hands-on training in

June.

4. Summary

A) Our plan is to run the programme for more than 8 hrs/day, seven days per week for the next three

years.

B) The programme has been very successful for children with ASD.

C) Edward is entitled to receive funding for an appropriate education.

Therefore we ask for EdwardÓs allocated funding to be dedicated to the Son-Rise programme.

5. Appendix: Programme Details

Philosophy: The Son-Rise programme places parents as key teachers, therapists and directors of

their own programs and utilises the home as the most nurturing environment in which to help their

children. The Son-Rise programme suggests that respect and caring are key factors impacting on a

child's motivation to learn, and from the beginning has made acceptance (of the child as they are) a

meaningful part of every teaching process. Employing this attitude, through the programme we seek

to create bonding and a safe environment first, and then apply sound, educational strategies to

encourage the childÓs development.

Core principles: Joining in a child's repetitive behaviour and ritualistic behaviours supplies the key to

unlocking the mystery of these behaviours and facilitates eye contact, social development and the

This document is the intellectual property of the author and may be shared only if left unaltered and in its

entirety with credit given.

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