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Our Search For Intervention and Support Tim and Michelle Rowntree Auckland, New Zealand We are the parents of Scott, a beautiful loving
two years, eight month old boy. At the end
of May 1999 we learnt from a paediatrician we
were referred to in England that Scott has
difficulties within the speech and language
subgroup of the broad autistic spectrum. We
were New Zealanders based in the UK at the
time, but we returned home to New Zealand a
few days later. Our world had shattered, and we
wanted the security of familiar surroundings.
Tim, Scotts dad, had seen some of Billys
programme, about secretin on TV in the UK, and
had taken note of the web site. This web site
today, is our main source of information about
secretin, diet, and intervention.
Having looked at Billys web site we decided to try
Scott on a gluten and casein free diet. There were
some similarities between Scotts case and Billys.
A lot of antibiotics for ear infections in his first
year, MMR, severe glue ear and grommets at two
years. Although we dont think Scott had a leaky
bowel, he did have very loose motions several
times a day. The next thing we did was get Scotts
food intolerances checked, by a holistic GP. Other
medical advice when asked said there were no
such tests. Gluten and casein did not show as
intolerances, but he was intolerant to sugar and a
few other things. In taking Scott off sugar, we
have had an immediate improvement in his
behaviour. His bouncing has been significantly
reduced and he is a much calmer little boy, now
able to concentrate and participate in play,
jigsaws etc. The holistic GP felt Scott did not need
to be on a gluten and casein free diet, so that
night, we gave Scott cows milk again. He
immediately got diarrhoea, so we returned to
Soya milk. Recently I have tried Scott with bread
again, containing wheat flour. We have done this
twice at lunchtimes, and on both occasions in the
afternoons, Scott developed extremely red ears,
which really irritated him. (I had very rarely seen
him with his red ears, since taking him off casein
and gluten.)
Our first visit to a paediatrician, in NZ (from the
private sector), offered advice on who to contact
(Autism Assoc. Auckland, and a few support
services), and put us in touch with Special
Education Services (SES). When we asked about
secretin, we were told it did not work. We have
since received an appointment with a
paediatrician, through our public health system;
we do not know what to expect from this.
The paediatrician, we saw in the UK, wrote a
report of her opinions that concluded: Scott will
benefit from early and vigorous intervention.
Through SES, Scott currently receives one hours
help, every two weeks, from an early intervention
teacher and one hours therapy, every two weeks,
from a speech therapist. Both are good and Scott
enjoys and thrives on the time they spend with
him. We also learn how to stimulate Scott. Neither
is a specialist in autism. This to us does not
constitute vigorous intervention.
We know Scott needs more therapy. We see the
huge benefit from the one-on-one with him. We
are in the process of trying to find out what is
available for us to do here. We know that neither
of us cannot physically and mentally devote the
necessary time to Scott to be his one-on-one
therapist. Scott also has a four-year-old brother
who also needs his mothers time. We are facing
the reality of funding Scotts Early Intervention
ourselves. How? - we do not know how to
finance this and get quality resources. We would
appreciate learning what support is available in
other countries and opinions on vigorous
intervention?
Tim and I attended the AGM of the Auckland
Autistic Association on 26 August 2020. What we
saw and heard did nothing to raise our hopes for
the future. The AGM was attended by a small
group of predominantly concerned parents. It was
apparent from their extensive experience that
there is no structured support available,
Government support is fragmented over a
multitude of departments and that you have to
fight and compete hard for every little scrap of
support. For some it seems they receive no
effective help given the time and effort put in. I
managed to talk Tim into becoming a committee
member; he is so much better at these things than
me (sorry Tim!).
Our objective is to learn as quickly
as possible for ourselves and Scott. We also want
to ensure that other parents who find themselves
in the same position dont have to repeat the
total knowledge quest that you easily find
yourselves in. Collect the knowledge and share it.
We have been in the world of autism for just over
three months, what we write is our interpretation
of what we have discovered so far. Our children
with help have a much better chance of coping
and contributing in this world but we are afraid
of not doing enough early or of getting it wrong.
Please contact us via the Autism File.
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