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Rebecca's Trust



Rebecca with her baby sister Catherine

In August 1993 one of Auckland’s largest churches was over-flowing for the funeral of Rebecca Hulst, the six- year-old daughter of Jane and Gerard.

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 Rebecca’s 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 Rebecca’s passion for The Muppets.

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 couldn’t".

 Her life may be different ...  but the goals were still the same

Jane says she remembered sitting in National Women’s 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 pre-school.

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 childcare full-time.

The transition has its problems, with some staff initially objecting to Rebecca’s inclusion in spite of extensive support from Jane. Things were patchy for the first week until a young worker took Jane aside saying she’d like to talk about Rebecca.

She said "I’d like to feed her lunch, but I’m 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 Rebecca’s and played a major part in her life.

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 didn’t 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 didn’t 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, I’d say ‘wonderful, it’s 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 Rebecca’s 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.

Jane’s 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 Rebecca’s 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 Hulst’s 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 nose.

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.

Rebecca’s love for Jane’s 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 teacher’s 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 Rebecca’s 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 out".

"Then we wouldn’t have to go through the steep learning curve we went through."

Now, just over seven months after her death, the results of Rebecca’s teaching remain. Tapes of Rebecca’s 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