In August 1993 one of Aucklands largest churches was
over-flowing for the funeral of Rebecca Hulst, the six- year-old daughter of Jane and
This was no ordinary funeral, with long faces and black suits, it
was a celebration of the place Rebecca had in her local community.
Rebecca was born on 14 October 1986. After eight months Jane started to think there was
something different about her daughter, a doubt she mentioned to her doctor during her
frequent visits. She was assured that children develop at different rates, but continued
to worry. "It was like she had stopped at six months", she said.
When Rebecca was 12 months old the family doctor advised Jane to continue with plans
for a two month family trip to Hong Kong. During the stay, however, Rebecca began
screaming constantly and showed a sudden regression in skills. A paediatrician in Hong
Kong questioned Jane closely about Rebeccas birth and early development, and advised
a full assessment when they returned home.
The tests began and just before Christmas talk of a mild disability began.
Jane and Gerard discovered Rebecca's passion for The Muppets
Jane describes these early assessments as being "like a war of attrition"
with mild disability gradually being replaced with words like profound and severe. The
screaming fits, which would "make the walls shake and the ceiling vibrate",
continued for a year - until Jane and Gerard discovered Rebeccas passion for The
This magical show would immediately quieten the loudest of screams, day and night, and
became a vital part of the Hulst family life.
When Rebecca was two, Jane went to see her paediatrician on one of her regular visits.
He said he thought Rebecca had Rett Syndrome and
gave Jane several articles to read there in his surgery.
It was like coming home ... it was all so familiar
"It was like coming home
walking through the garden gate and opening up the
front door with my own key," Jane says. "It was all so familiar". The
photographs accompanying the articles gave little hope. Girls were slumped in bean bags,
drips going into thin, wasted arms, faces were unhappy and large bulky naps were wrapped
around skinny middles. The articles also said that Rebecca would have the intellectual
ability of a weeks-old baby.
Rebecca had been booked into a local childcare before she was born so Jane could
continue work, but when her disabilities became obvious Jane cancelled the place. Rebecca
began at the Intellectually Handicapped Society (IHC) Fitzgerald Centre in Glen Innes,
three suburbs away from home.
When Rebecca was three, Jane want to a mainstreaming support group meeting organised by
the IHC. She says she had thought about school and wanted Rebecca to go to a local primary
school, but she knew "it was impossible". This meeting told her something
different, and she went home resolving to "look at the things Rebecca could do and
not the things she couldnt".
Her life may be different ... but the
goals were still the same
Jane says she remembered sitting in National Womens Hospital with an hours-old
Rebecca lying in her arms thinking "what do I want for this child?" Her goals,
set that day, were that "she be happy, that she have good friends, a nice place to
live, a fulfilling partnership and a satisfying occupation.
"Then I got tied up in negativity, until one day I remembered those goals. Her
life may be different to what I had imagined, but the goals were still the same, she could
live a rich life.
"I just got on with it and I felt society should do the same."
A turning point came when IHC decided to close the Fitzgerald Centre and the children
had to find places in community settings. This was a blow to the Hulsts who had felt
Rebecca was protected and secure. They were pessimistic about finding a suitable
what they wanted ... not what they thought was possible
It all looked bleak until an IHC staff member asked what they wanted for Rebecca, not
what they though was possible. They replied that they would like her to go to the
childcare centre she was originally booked into.
The IHC worker toiled to ensure this wish came true and Rebecca started attending the
The transition has its problems, with some staff initially objecting to Rebeccas
inclusion in spite of extensive support from Jane. Things were patchy for the first week
until a young worker took Jane aside saying shed like to talk about Rebecca.
She said "Id like to feed her lunch, but Im not sure how to hold the
spoon and how much she should have and I feel inadequate". That was the breakthrough
and gradually Rebecca become just one of the kids.
This staff member became a close friend of Rebeccas and played a major part in
The first weeks were difficult
When Rebecca turned five she went to a local primary school. The first weeks were
difficult with some making it plain they didnt feel Rebecca belonged, an attitude
never shown to the parents of children without disabilities.
At first, Jane remembers, there were a few who welcomed her, a few who were neutral and
a few who didnt like it. In spite of some support in those early days Jane says she
felt so unwelcome. "But when people asked how it was going, Id say
wonderful, its going really well," said Jane.
"We chose the school, just as other parents do, Rebecca had a right to go there
and she was going there."
Gradually Rebeccas charm won and she became a valued member of the school. Jane
joined the PTA, Gerard was co-opted to the Board of Trustees, and they formed friendships
with many of the other parents.
Janes commitment to advocacy, the skill that had helped Rebecca re-enter her
local community, led her to producing a recipe book, Simply Salads, which raised over
$80,000 for advocacy by IHC. A second book, Befores & Afters, is raising money for the
Rebecca Hulst Trust.
when she was critically ill ... her bed was surrounded by friends
During the last weeks of Rebeccas life, when she was critically ill in hospital,
her bed was surrounded by the friends she had made throughout her life. When she died,
school friends sang at her funeral, local families arranged a huge morning tea for the
packed church, and the Hulsts home was full of people.
Jane says she loved Rebecca irrationally, and everyone must have one person who
loves them irrationally". She became driven to get Rebecca included and valued.
This philosophy led to Rebecca having a full life, where episodes stand out.
In 1992 Jane and Gerard took Rebecca to Melbourne to attend a course in
facilitated communication, a method in which a person who cannot speak is helped to
use a keyboard or communication board. At the first session Rebecca was shown two pieces
of fruit and asked which was the banana, she touched it and went on to identify more fruit
and television characters.
Rebecca used yes/no cards pointing with her nose
The session then moved on to questions with Rebecca using a yes/no switch to answer.
Other communication options were then explored and Rebecca quickly learnt to use a
combination of communication board and head pointer, or yes/no cards pointing with her
This journey gave Rebecca the power to choose, a power she used wisely, choosing
breakfast muffins over cereal, whether to turn left or right when out walking, and who
should be invited to her birthday party.
Rebeccas love for Janes father also stands out. The two spent many hours
cuddled up together watching cricket on TV, and Jane says Rebecca also had a special smile
reserved for her favourite grandfather.
Jane also tells of learning expeditions into the trendy Newmarket shopping centre,
where Rebecca and her teachers aide would try perfumes, look at clothes, and feast
on deli food. Friends remember the Hulst family arriving for evening meetings, Rebecca
with a hamburger and a Muppet video, both of which she would devour with pleasure.
We loved Rebecca the way she was
Jane says if she had Rebeccas life again, she would like her the way she was
but she would like her to be born "when we had the inclusive philosophy worked
"Then we wouldnt have to go through the steep learning curve we went
Now, just over seven months after her death, the results of Rebeccas teaching
remain. Tapes of Rebeccas facilitated communication assessments are used throughout
the world, her fund is to be used to help other families. Children
with disabilities are being welcomed at her school and her classmates
will go through life with an appreciation of the value of difference. Jane and Gerard have
shown that a family can be whole and happy and fully include a child with a disability.
This article, written by Elizabeth Palmer, was first published in
'Community Moves' magazine in April 1993. It is reproduced with their kind permission