OUR JOURNEY

Maria Moran tells the story of her daughter Jessica’s diagnosis on the autism spectrum and the whole familys’ journey as they tried to find their way through a maze of treatments and opinions for the best method to help and care for her.

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On 23 March 2003, Jessica began her formal education. She joined a newly opened pre-school for children with autism in St Helen’s National School in Portmarnock, where she was happy and made great progress. We also availed of home tuition from a separate source for twenty hours a week. We then went about finding home tutors.

Along the way we met a lot of people who were, in my opinion, incompetent. Most of these ‘so.called’ tutors were not properly trained and were, I felt, only in it for what money they could make out of it. I expressed my concerns to the Department of Education. The Department has reformed the criteria for home tutors. They must now be qualified teachers with a school roll number and have appropriate experience with children with autism.

Eventually, through trial and error, we came across some good tutors. One, in particular, stood out—a primary teacher with experience in special educational needs. Jessica went from strength to strength.
Jessica had been on a waiting list for several years for an ABA school. When we heard that she could finally start at this particular school, we were delighted. Jessica spent several years there, sometimes making progress and sometimes regressing again.

In 2008 Jessica got very upset and violent and would have a ‘meltdown’ for no apparent reason. I spoke to the director of the school about this. In my opinion certain programmes were put into place that had a devastating effect on Jess. She was placed in a class with children who had violent behaviours and, in my view, inappropriate methods were used to control Jessica’s outbursts. I asked that she be removed from the class and that the methods would be discontinued. On the advice of a psychologist attached to another service, Jessica was placed in a room on her own and progressed again. After a couple of months she rejoined her classmates and did very well.

On a Tuesday morning, 31 August 1999, an incredible journey began for me, my husband and family. Jessica Elizabeth was born in the Rotunda Hospital, Dublin, overdue by a couple of weeks. After an arduous and difficult birth, I held my precious bundle in my arms. She was so beautiful—the youngest of five daughters. I felt all my dreams and aspirations had come to fruition.

Jessica developed normally and reached all her developmental goals, until about thirteen months. She seemed to have a clumsy walk and did not interact well with others. We went to Temple Street Hospital and had a series of tests done, which showed up as inconclusive.

In August 2002, still not happy with Jessica’s development, I contacted the Mater Hospital’s Child Guidance Clinic in Ballymun, where in November 2002, we finally got the devastating news that Jessica was on the autistic spectrum. We were not prepared for the diagnosis; we did not know which way to turn. The psychiatrist who gave us the diagnosis advised us not to buy into all the hype that surrounded cures for ‘autism’. Unfortunately we did not take his advice, and went everywhere and to anyone to find help in obtaining a cure. We looked into the Sunrise Programmeme, ABA (Analytical Behavioural Analysis), special diets, potions and oils. We bought into it all.

An advisor for the Sunrise Programme told me that I was giving up on my daughter when I decided not to part with the €20,000 needed to attend the programme in America. When we heard about ABA, we went to a lecture in NUI Maynooth to learn more about it. I called the number we were given in the lecture and added Jessica’s name to a waiting list at an ABA school.

Jessica’s diagnosis on the autism spectrum and the whole familys’ journey as they tried to find their way through a maze of treatments and opinions for the best method to help and care for her.

Jessica made her first Holy Communion in May 2009; she was very happy and content in herself- She even did a reading on her Communion day. We were overjoyed.

Jessica began early adolescence at ten years of age in October 2009. Again she got upset and violent and the meltdowns began once more. She began stripping and her toilet training regressed. She was put in a room on her own again, where she trashed the classroom, and once during this time she tried to strip off on the school bus. On one particular occasion in February 2010, she came home from school and trashed the house. She refused to go back to school and spent the next eight months at home and would not leave the house.

The whole family was greatly affected by these developments. Stress and strain took its toll on my health and I ended up in hospital three times. Jessica and I were housebound for months on end.

In September 2010 Jessica joined what I can only describe as the ‘family of St Paul’s’, in Beaumont, Dublin. Under the guidance and care of the staff there, Jessica has bloomed into a very happy young lady.

I ask myself what we have learnt from our experience. I have come to the conclusion that it was a mistake to buy into the hype that there is a cure for autism. Furthermore, we have learned to love, accept and cherish Jessica as she is, as we journey through life together as a family.

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