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Sarah L

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About Sarah L

  • Rank
    Salisbury Hill
  • Birthday 11/10/1960

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  • Location
    Staines, Middlesex
  • Interests
    Swimming, Photography, reading, cinema
  1. Hi, Everyone, My son J has ASD with ADHD, he is registered disabled. He also suffers with sensory senstivity and hates wearing clothes. He prefers to be in the nude at home so I keep the house warm for him. We have a very old boiler over 25 years old which desperatly needs replacing. At a recent meeting there was a big splash about Warm Front. A government "thing" to help with energy saving including loft installation, cavity wall insulation and replacement boilers. The person talking was saying that this was specifically to help people with disabilties and low income families. I thought great I will give them a call find out what it is about. I then had this strange and ridiculous conversation with this lady that we could not have a grant because J though disabled is not the homeowner or tennant, and though I am also on a benefits, it was the wrong sort of benefit. She then went on to explain that if I made my 5 year old a tennant, he would be entitled to the grant. One I was dumbfounded that a disabled child is not considered a householder and two that she would be telling how to get round the system? Sarah
  2. As you have posted this under education I assume that you are talking about an assessment for a statement. If you have not already done so you should get your self a SEN Information pack from the DfES. It is free and give lots maybe too much literature on statementing. The telephone number is 0845 60 222 60 or e-mail: dfes@prolog.uk.com. When I started the assessment process, the most important person was the Ed.Psych. One of things that I discovered was that very often the Ed.Psych. are called in to do an observation of the child by the school and the resulting report is very different from a full assessment report. It took me several conversations to establish the right language for talking about my child. The assessment needs to focus on several things and the school sen and you as the parent will need to show the pattern you described in the post. The sen code of practice writes about previous educational experiences so this can include nursery as well. I know it is awfull when you are in a good phase but it will be necessary to describe in some detail how bad it gets in order to get the right number of points for a statement. I found it emotionally draining but well worth the effort as my son now has a one to one support in mainstream school. I know I have been lucky but I have battled all the way along. The other place that you might try to get some advice from is Parents in Partnership, This is a organisation to help parents when a statement is being written, revised etc. They can provide an Independant Parental Supporter. This can be really important for meetings, as they hear much more of what is said than you might because emotions can get in the way. I hope this has helped. Good luck Sarah
  3. Hi, Everyone, Did anyone see this - are you effected. http://news.bbc.co.uk/1/low/education/6279001.stm When my son's statement was being written I kept saying that things needed to be quantified and qualified. I was made to step down or take LEA to tribunal. I became too exhausted and just wanted a school place and statement. I am now thinking I should so back to SCC. Sarah
  4. Hi, I have read this topic with interest. My son will be 5 later this month. I first starting getting injuried when my son was only 20 months old. I have lost count of the number of black eyes, stitches, bruises etc. that I have had. His first dianogsis was ADHD with probable ASD. He was started on equasym and melotonin, both had a positive effect even if I cried for 3 days before giving him the first dose. The equasym make him less hyeprative but did not take away the aggressive outbursts. The melotonin got him to sleep but did not keep him asleep, the best we every managed was 5 hours. He started on 0.2mg of risperidone on the doctors recommendation last summer, it took several weeks before I really noticed a difference but it has made a difference. The outbursts still happen but not as often and not as severe. My son has blood test every 4 months which have been fine. As my son is underweight for his height there was no mention of weight gain, if anything he has lost weight. On a good night he now sleeps for 7 hours which is almost normal for a 5year old. I have been pleased with risperidone. Sarah
  5. I went to the local asd carers meeting yesterday. It was very useful, I managed to get a couple of phone numbers of people higher up the scale of education and social services. Got home and made the telephone calls and now the lea case officer is sounding more positive about temporary (ie the six weeks) of transport required and there may be a pot of money at the local child services that could cover a carer taking JJ to his activities. At the moment just talk but definitely a step forward. Sarah -
  6. I have been waiting for an operation for nearly two years now. I finally get a date - 14 February. After the op I will not be able to drive or lift for six weeks. I need to get some help, I had been told previously that this would be availble when I needed it. I told the school - response "just let us know who will be collect JJ". Spoke to my care co-ordinator - response "Surely you and your husband must have talked about this when you agreed to the operation". Health visitor has spoken to Cross roads - response "we don't have any volunteers available at the moment" The social worker was to visit this morning - called to say he was feeling well because he had been working all weekend on a report so he wouldn't be visiting. He also said that because it was the end of financial year they was no money for JJ's respite package which has been talked about for nearly a year now. Even though JJ's statement said about transport to school because we live 2 miles from school not 3 miles from school we can not have this either. What is the point - I am desperate and don't know where to turn.
  7. On Saturday 10 June 2006, I completed the Ribbon walk at Blenheim Place, Oxfordshire in aid of Breast Cancer Care. I feel elated from my success. The high point was seeing George and Julian half a mile from the end of the walk, the low point was at the 4 mile marker when I had just finish 2 mile along a chalk path across a farm with no shade on the hottest day of the year. When I do this again I will do more training and enlist someone (or more than one person) do walk with me. I was very impressed with the organisation and support given by Woman & Home magazine. It just leaves me to say a big Thank You to all those who have sponsored me. Sarah
  8. My son finds it difficult to be in the car. He is strong enough and bright enough to open all of the harnesses and buckles we have tried to date. We have been recommended to use the Britax Traveller plus SI but at ?420 plus VAT. It feels like an expensive gamble on something that may or may not work. Does anyone have any experience with this seat that they could share? I am equally terrified that if we do not solve the problem that he may cause me to have an accident and get hurt in the process. Help please. Sarah
  9. Thank you to everyone who added a reply here. The links were helpful. I am looking to use cards to help my get dressed and undressed and will tackle the toileing during summer holiday. I think some of my stress has rubbed off on my son so I am backing off and letting it be. The schools will have to cope. I can not be the first and I won't be the last. Cheers Sarah
  10. Hi, My 4 year son Julian who was diagnosed with ASD and ADHD last year and is still in nappies. This seems to be causing a great deal of discussion between health professionals and schools. Of course I would like to solve this before he starts school in september but my three attempt have ended in disaster. I now have a little boy who does want to come out of nappies and get distressed at any talk or actions that involve nappies. Can anyone help or advise me on what to do next. Sarah
  11. Sarah L

    Introductions!!

    Hi, Everyone, My name is Sarah and I have one son Julian (or JJ), he was diagnosed with ADHD in February 2005 and later with Autism in December 2005. He was 4 yesterday, 17 February. I am very new to forums etc, I am trying to get used to reading the information. Also the keyboard on my computer is broken so bear with me if you have any strange words. Looking forward to posting here. Cheers Sarah
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