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      14.02.2005 18:21
      Very helpful



      I remember vividly the night of July 10 1991, me and my wife returned from the local hospital with the news that she was in labour and so, Sharon’s parents were called to look after Natalie and although a day early Natalie opened her Birthday presents, I can’t remember all of them, but I do remember a Netball Hoop and an Aladdin doll.

      We then set off and in the early hours of the morning, Natalie’s Birthday, Harry was born.

      The first problem he caused was an inability to maintain his body temperature and so he was packed off with a woolly hat to sleep under the heater, at this time, we had no idea that Harry had any other problems.

      The next day the doctor came round to examine Harry and Sharon and decided it was OK to go home, over the next few weeks we had regular visits from the midwife and health visitor, Harry’s six weeks check up passed without mention of Down’s Syndrome and in fact we still had no idea.

      Then about 2 weeks later a neighbour spoke to my wife when she was out shopping and said she was sorry that Harry was Down’s Syndrome and that her Husbands Uncle was Down’s and that he was a great character. As soon as Sharon got in she phoned me at work and the doctors and we took Harry to the surgery, the GP examined Harry and said that he couldn’t be sure and that the only way to be sure would be a blood test and he sent us to the paediatric department of the local hospital, the registrar there also said that she couldn’t be sure one way or the other and carried out the blood test, we then went home to await the results.

      A week or so later we were at the surgery for Harry’s routine injections, and we were in the Nurses room just about to have the dreaded Jab! When our GP walked in said the results are positive, just treat him normally and walked out, my wife burst into to tears I was in shock, the nurse injected Harry and the said go sit in the waiting room for 15 minutes to make sure Harry has no reaction! Those 15 minutes were probably the worst of my life, Sharon was sobbing, and we were convinced that everyone was staring at Harry. My shock was rapidly turning to anger at the way we were treated, it could have been handled so much better, I always feel that Harry should have had the injection, The doctor then called us to his surgery to tell us the result and have at least some information for us to take away, even the phone number for the Down’s Syndrome Association would have been a start.

      Having found their number the DSA were great, they talked for as long as you wanted to and provided some useful literature, the book they gave we still refer to from time to time nearly 8 years later.

      This period was covered by Womans Own as part of Down’s Syndrome awareness week when Harry was about 2 years old.

      My wife felt she would need more support from her parents and so we moved house to be nearer to them and the village we moved to seemed to be the black hole as far as health services were concerned with both Salisbury and Swindon Hospitals trying to dissuade us from using their services, but on the plus side we gained a tremendous community nurse, Tracey Greenaway, she was fantastic with Harry and we began to see some progress, and then after a year she announced that she was leaving the area, sadly this has always seemed to be the way with Harry’s services (perhaps we tip them over the edge). Her replacement never got on with Harry, he would do nothing for her and when he went to playgroup, with one to one help, her visits were stopped, but a few months later the Portage service arrived in our part of Wiltshire and it was her that first talked about the possibility of Autism, this was dismissed by most other people including the paediatrician and Occupational Therapist who was also Harry’s Key worker.

      Harry the started to attend Starworld a Special Needs Preschool where he stayed for 2 years, this was attached to a MLD school and this was where we assumed that Harry would continue his schooling, but no it was advised that Harry would need a SLD School and that we should go and visit Exeter House in Salisbury, after the visit both me and my wife instantly took a dislike to the attitude of the Head teacher who seem to concentrate purely on the school and not how Harry needs would be met and we decided Harry would not be going there.

      The only other real option was Icknield School In Andover, and what a difference, although the school was much older and probably in need of some renovation the attitude of the staff was completely different, they talked more about Harry than the school and we spent quite a time with Moira who was the teacher of the Reception Class. We decided this is where we wanted Harry to go!

      And so the statement of special educational needs process began, as a parent of a child with a disability you will be vary familiar with the process of form filling, the result of this form filling was that the LEA agreed that Harry would be best served by a SLD school and that they recommended Exeter House in Salisbury as it was the catchment area for us, but as we said previously we were not happy and asked for Icknield School, the problem, however is getting Wiltshire County Council to fund a place in a Hampshire School, we were quite prepared to argue our case and in the end with the support of a few people managed to get what we wanted.

      Harry has settled well at school and is now in his third year there, he still has no speech, but can understand simple commands and this is reinforced with Makaton Signing and he is progressing well with PECS (picture exchange communication system) where photographs are exchanged as a method of requesting his needs, and this system is also being used at home.

      It was during Harry’s last annual review that the subject of Autism was brought up again and as a result Harry has been referred to the PDDAG panel, but we are still waiting.

      Please check out my Website www.ds-asd.tk


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