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sassyj

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About sassyj

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  1. hi lilypad. i hope i can help. ask your gp for a referal to the neurology department. atkins and morley department St georges hospital london. proffesor mary robertson is in charge there and the leading proffesor in the uk. it took us a while to get an appointment but we got there in the end. dont let your gp put you. off insist. even if it is out of your area it is worth going as they are the best! early diagnosis is best. and then your child may or may not be given medication depending on the severity of the tics and how they impact life. my Ds is really struggling with his at the moment and we are going to have to phone St Georges for an emergency appointment. good luck. sarah xx
  2. Hi Joy, sounds like you are best out of it. I understand completly how difficult it can be with family members that dont understand Autism. My brother is totally useless at understanding cheeky one, he tries to be supportive but usually makes situations worse. I have now come to the point where I wont go to his house unless absolutly necessary, but I do welcome him in my home as long as he follows the rules I make. What a lot of money your cousin is spendin on a wedding that hardly anyone will be attending! I think the cousin has got her just deserts.
  3. before diagnosis, I knew somethin wasnt quite right, he just wasnt like my older children, cheeky one got dx at 6& a half, Diagnosis was brill because I understand him better now after researchin and talkin to people on here, also he got full statement in a specialist independent school which was a god send coz he had been out of school for a yr before that as school couldnt cope. Family life just as difficult as before, cant do much socially or as a family, we have had to learn to kerb time so that when we are out he knows it wont be for long. The older two find it hard as they dont always get the attention they need until cheeky one is asleep. Thinkin about it, it has changed our lives hugely, but you just kind of get on with it and except it, apart from the odd day when a good grizzle does me good. Sarah
  4. Hi everyone, Well we got back from holiday 5 days ago and my feet havent touched the floor lol. We had a fantastic holiday in cornwall, in and out the outdoor heated pool and in and out the hot tub. went to a few places like animals parks (goats, guinea pigs rabbits ponies) it was lovely and we all fell in love with the rabbits so when we came home I bought one, a beautiful lop eared golden 12wk old rabbit we call fudge. The next day we went to collect my daughters horse we were purchasing and after 2and a half hours of trying to get the horse in the box we were startin to dispare but we got her in eventually only to breakdown when we got her almost to the field. 10 hours I was out that day sorting the horse out, since then been tryin to catch up with washin from holiday, entertaining mother in law and driving back and forth to the field to look after Summer (the horse) On top of all that on Friday, I get my new puppy yippee, Mad house we live in lol sarah
  5. Hi everyone, Just to let you know that I want be about for the next 10 days as, we are off on holiday to cornwall tomorrow, hooray cant wait. Sarah
  6. Hi, I have to say I agree with a lot the others have said. diagnosis is a shock even if you were prepared for it, (having things written down in black and white can be much harder to take) you need to give yourself a bit of time to adjust , to be honest we had our diagnosis last oct and we are still coming to terms with it so dont be too hard on yourself. You should be pleased that at least the professionals diagnosed so early, my son was 6 before dx and missed out on a lot of valuable therapies and treatments so although it may not seem like it, at least your son has early intervention. I would just like to say, a lot of us are in the same boat here and I have found the forum to be a great support group so hope you find that too. By the way, welcome to the forum. Sarah
  7. Thanks Sally and Enid for your replies, I have just got the explosive child book from the library, yesterday. It is making a lot of sense and I have decided to try and keep a positive mind and give it a good try. I also have 1,2,3 magic but it didnt work with My DS. The problem with giving him a time out in his room is he is so big and heavy I cant actually get him there if he is adamant he is not going! Risperidone was great with my darlin DS he was on it for about 2 yrs but after 18 months it didnt have the same effect and he piled on the weight, because there is a history of insulin dependent diabetes CAMHS decided to take him off it. We have an appointment with CAMHS next week and I am hopin that they will offer us some support or behaviour programme for DS. After readin some of the explosive child, I realise that as his family we may be contributing to DS frustration and that he needs warnings about time to transfer from one thing to another. DS often has a melt down because he is playing his ds and we tell him its time for bed,dinner, going out, but I realise now that he needs some time warning to move from one thing to the other. A lot of his meltdowns are about control, he tries to control the family, he thinks it is his job to wake up my eldest two who are both teenagers. They dont want to be woken up by him and it usually esculates into a full screamin hitting match, unfortunatly he does it when my back is turned or in the bathroom so I dont have time to intervene. My eldest two are off to their fathers for the wkd so at least they will get a break from the abuse. I will let you know how I get on at CAMHS. Thanks again Sarah x
  8. Hi Everyone, I just am hoping that someone has some ideas on how I can bring some sort of order into my home. I have 3 children, oldest 17 and has anxiety issues, middle son 13 (a horrible child at the moment) and My youngest son 7 who has tourettes ASD, possible Adhd and sensory processing disorder. I am pullin my hair out with my youngest at the moment, he is physically violent, tried to punch my mother in the face, kicks us punches us, screams in our ears and slammin doors so hard that they are coming off the hinges, these tempers seem to happen at least 3-5 times a day and we are all fed up with it, He is over 7 stone so hurts and it is difficult to remove him from a room, if we all leave the room he headbutts laptops tv and throws things around. I have tried time out, 1,2,3 , removing things he loves and not letting him go out to play but nothin works he just doesnt seem to be able to realise that he is goin to be punished (he also doesnt seem to care if he is punished) He swears at us , threatens us and is totally defiant, I often have to double lock the front door to stop him running outside during his temper. He is taking fluoxetine and abilify, (obviously they arent working) and he has melatonin at night, which takes about 2-3hrs to kick in. He has been well behaved at school so far, ( he started last week) but seems to meltdown when he gets home and at wkds and holidays. He doesnt care where he will have a meltdown and often does it when we are out (I try not to take him out very often anymore.) If we try to restrain him from hurtin someone he screams that we are punching him biting him and (we have never hurt him) and I worry that as he is gettin bigger he is goin to do someone some really bad damage . Or we are goin to end up with social services knocking on our door. I feel totally out of control, I have always managed to discipline my elder two children and they have their moments but are pretty respectful good kids, but I feel like I am failing as a mother with my youngest and am scared for our future. Any advice would be appreciated My youngest is under CAMHS and has been on risperidone in the past and pimozide and strattera and ritalin but CAMHS team took them off them for various reasons and since coming off the risperidone I feel like we have lost control of him. He is also under St Georges for his tourettes but we arnt seeing them until the middle of July. Sometimes it is a complete nightmare living here (even tho I love my children very much) Sorry for griping but I really feel desperate at the moment. Sarah
  9. Hi, I have home educated all three of mine at some point over the last 6 yrs. My daughter was a breeze to home ed, she loved learning and reading and creating so she was so easy. She is now nearly 18 and has been in college for 2 yrs and is happy (she had a breakdown at secondary school, she couldnt cope with all the changes) My eldest son has been HE for the last yr and was brilliant for the first 6 months but is now a teenager and has no motivation and uses his younger bruv as any excuse to not do any work. My youngest (ASD and Tourettes) has also been HE for the last yr due to the fact that the school couldnt cope with his needs, we have finally got him a statement and he is due to start a specialist school next week. During the last yr it has been a total nightmare to home educate the two boys, as there are so many distractions at home even the post gives them a reason to skip off and of course the phone ringing doesnt help. As for the socialising, that hasnt been too much of a problem as we have a very large family who visit often, but aside from that the only one that has managed to maintain a friendship is the youngest strangely and I think that is because I instigate it and his friend is very understanding with a brother of his own that has similar problems. I think it is a very individual choice and depends on the child and the parent, I have to say, I felt exhausted having them with me 24/7 but would do it for any of them if I felt it benefitted them. I'm hoping that when my youngest goes to school my eldest son will relax a bit more and get his motivation back. Good luck with whatever you decide to do, as parents we are always blaming ourselves and feeling guilty for the way we have done things but truly you must be a very caring parent to be agonising over this decision. Sarah
  10. sassyj

    hooray

    Hi Claire, I do worry about how I will be when DS goes to school, I am expecting to feel exhausted , anxious and a bit flat for a while, I suppose when you have been fighting things for so long and they actually come to a happy conclusion all the steam gets knocked out of you. I wont have too much time to dwell tho as its my daughters 18th birthday and My bruvs wedding in the next couple of months so although things will be quite for a week or so it will soon pick up, also we have a holiday booked in june so that will be manic. I think things will probably really hit me hard in Sept when DS is full time and DD goes to college in another town! I will still have my eldest DS at home tho home edding him and havent managed to persuade him to go back to school yet!!! Sarah
  11. sassyj

    hooray

    Thanks everyone, will let you know how he gets on. I am counting the days down. Sarah
  12. sassyj

    hooray

    Hi Everyone, Hooray, we have finally recieved a decision from the specialist independent school we want our DS to go to and they have agreed He starts part time on the 18th of May and then hopefully all being well he will start full time after the half term holiday. We have been thru the mill trying to get him statemented and now it is finally over, I am also scared to get excited because something is bound to go wrong (isnt it?) I have been home-educating DS for a yr now and to be honest I'm spent emotionally, physically and mentally, I really need the break, so him going to school will give me some of my life back ( i hope) To all you home-edders out there, well done, I tried but just couldnt do it long term with DS. Sarah
  13. Hi C, I dont know how old your child is but I have taken all three of my children out of the school system at various times because they couldnt cope and wernt offered support, only my youngest has a diagnosis of ASD but the older two had there own probs, dyslexia, panic attacks depression and they wernt helped, the youngest went to school for 18 mths then I took him out because he was an emotional mess. My oldest my daughter is now at college and doing very well, we paid for work to be sent to her and paid for her to take her GCSE's which I have to say cost us a fortune but was worth it for my dd mental health, My middle child, my eldest boy went to a grammer school but because of his dyslexia which the school never accepted and his organisation problems and bullying that was never resolved, we took him out, he has been out for a yr now and is so much happier and seems more mature, he works hard from home but finds it difficult with my youngest with ASD and other diagnosis home with him. We took the youngest out because he was just left in a corner at mainstream and given buckets to be sick in in front of the class, (he suffers with tourettes and has vomiting tics) I worked in the school at the time and was horrified at how they treated all SEN children not just my son) so took him out. We are in the process of getting him a final statement of special educational needs and hope to get him into an ASD specialist school. I dont think there is enough imformative teachers, lsa's or heads on ASD and because our children look normal they are expected to be treated as normal, which unfortunatly doesnt always work. Sarah
  14. Hi, I have 3 children the youngest who is 6 has AS, the older two are 13 and nearly 18 and they find it very dificult to cope with M tantrums, permanent demands and violence. The 13 yr old is very resentful and bursts into tears at the drop of a hat and he spends a lot of timing trying to hide in his bedroom or mine to get away from him, he does try to play with him sometimes but because it is all one sided (M's way or no way) the 13 yr old gets fed up. My nearly 18 yr sleeps a lot during the day when she is not at college and I think that is her way of shutting off from it all, We are in the process of weaning M off his meds coz he was on 3 antipsychotics (M also has ADHD, TOURETTES, ODD & SPD) so things are a real nightmare at the mo, hoping that once he starts school and starts concerta things will calm down a little bit coz he is at home 24/7 at the mo while waiting for statement to be finalised. Sometimes I feel like I cant handle him anymore so no wonder my two eldest feel so frustated! Talking about tantrums (here we go again) he wants to go out to play and I said later coz no-one out in the street yet and he will start screaming at people and knocking on their doors to get up. Yesterday he ended up rolling round in the round screaming because a little girl wouldnt do what he wanted so he started screaming at her pulling her clothes and ended up on the floor crying, (he is so big now, I cant lift him) I dont know what to do sometimes I think it would be easier to keep him in so he doesnt upset the other kids in the street, but that doesnt seem fair either. Sarah
  15. Hi My Ds has been on risperidone for over a yr and we didnt feel that the benefits were great, it just took the edge off his aggression and he was a little less hyper, we have had to wean him off it because he has put so much weight on with it, he is only 6 and weighs over 7 stone, dont get me wrong he was over weight before he went on this med but the risperidone just made him ravenous all the time! Sarah
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