joybed

Well done to both of you. Marcus isn,t too bad regarding food as long as it isn,t in anyway sloppy. Anything in a sauce and he freaks, doesn,t like gravy, custard etc. The only exception is ice cream and yoghurt but we are now having issues with yoghurts as he doesn,t like the look of the cartons and the way he can,t get them completely clean (he has real issues with having a completely clean plate no crumbs at all drives DH mad). He doesn,t drink any milk or anything hot. I recently tried him with spaghetti bolognaise and he will eat it sometimes happily but soemtimes moans like mad, he won,t have spaghetti only pasta twirls. On the whole i am happy to indulge him but Dh gets annoyed and says he makes too much work for me to which I reply if I minded i wouldnt do it. It sometimes surprises me what he will eat though, when we went gluten casein free some of the food was very bland but he seemed to enjoy it.

Marcus has had problems forever with his bowels. He was late to train and then got so constipated he was afraid to go. He would hold himself al day and then soil himself in his sleep, not pleasant at 3am I can tell you. We had a referral to paeds and he was prescribed lactulose and sodium picosulphate. At one pint he was taking twice the adult recommended dose. He still hates going to the toilet and is now on movicol paediatric when he was switched to this he too was impacted and we had to folllow a regime wheir we started on 2 sachets a day and ended up on 12. this gave him diarrhoea but cleared the impaction we then got to a maintenance dose. Currently on 4 sachets a day. We mix it with squash and he is really faddy and is happy to take it as you can,t taste it when mixed in with another drink. We have been told he will be on this for the remainder of his life if we try to reduce it he just stops going again and i think this will also be an issue for him

Hi Lou Lou dont really know what to say other than i am thinking of you at this difficult time and you are absolutely doing the right thing. I only hope I could be as brave as you at times like this. Sending you big <'> and look after yourself.

wife

My twins have always called them huggles it is really sweet.

He was a lot happier yesterday enjoyed school and was quite happy to tell me all about it. It was Lydia,s turn to be upset she didn,t want to stay for dinner and had to be persuaded to go into the hall. She says she doesn,t like the dinners and would rather be at home with me. I know they will settle eventually but I also feel as twins they are playing of each other if you see what i mean. They get on really well but also fight really well and they are very competitive. They also have very different personalitys Piers is very hyperactive (my parents convinced he has ADHD) and has always had a very nasty temper. Lydia is very shy and quiet and if she is going to be naughty is very devious about it. I suppose different children bring different worries.

Marcus did this once, he wasn,t diagnosed at the time, in fact i only had a fleeting suspicion something wasn,t right but had no idea what so i couldn,t explain his behaviour at all. We had been on holiday to Crete and were boarding the plane we were allowed to use his buggy to cross to the palne and then had to leave it at the bottom of the steps. M started screaming, kicking , biting and became incredibly strong. He couldnt speak well but I got the idea that he thought we were leaving his buggy behind. I couldn,t explain to him we were going to get it back at the end of the flight and he continued to scream etc. i was getting all these can,t you control your child looks and i was alone as a single parent at the time. A stewardess gave him some smarties in an attempt to calm him but it was pre natural colours days and this made him worse. We were an hour into the flight before he stopped wailing and he whinged until he eventually fell asleep 2 hours after this. Not a good time and i had lots of great bruises. Spurred me on to go to the GP and get help though.

Good luck Karen hope it all goes well. I don,t think others realize how important diagnosis is.

Really thinking of you at this difficult time Lou Lou you really so very brave and an inspiration to us all. I feel so sad it as come to this though, if you had had help from the beginning it might not have been like this. They say the support is there but only when it fits in with there budget. Take care of yourself will be thinking of you.

Marcus lost loads as well when he first started comp. He would leave things on the bus in classrooms. Forget his lunch, homework. his organisation has improved slightly but he still needs remainding and forgot his lunch the other day again, i had to throw the other 2 in the car and race to school. He is such a faddy eater it is not appropriate to say eat a school meal. His main problem at the moment is homework he always remebers just as he is getting into bed or leaving for school that he is on his final warning and will probably get a detention. I always check his diary but he often doesn,t write it down. It drives us mad as he then has a major meltdown at the most awkward times

Pig

Hope you have a good birthday and everything turns out OK.

My twins have just started primary but at the moment are only going half a day. Last night Piers was very upset i was in his room until 21.30. The problem, he says he is at school too long and misses me. Apparently he said to his teacher that he neeeded a huggle from me and she replied quite rightly that he could have one later. He said he gets lonely despite having lydia in the class with him. To top all this of he said his best friend from nursery has made a new friend and won,t let him play. He was so sweet and I really felt for him. The strangest thing though was that as i left the room I realized this is a totally new situation for me as DS1 (ASD) couldn,t care less about having a huggle or having a friend. So a totally new set of problems with my little babies, who said being a parent was easy.

I think food allergies/ intolerances are becoming far more common. I have IBS and have to really limit bread, wheat, bran or i get severe abdo pain which is quite debilitating. I also suffer from oesophagitis (severe chest pain due to swelling of the oesophagus) this is brought on by eating fatty, spicy , acidic food and I have to eat really healthily all the time if i don,t i am awake all night vomiting in excruciating pain. I take medication all the time for this but still have a flare up at least once a month and almost always have acid indigestion. I have also had to limit alcohol (boo Hoo). I am sure i am intolerant to lots of things as I always feel very tired, headachy, nauseous and just generally unwell most of the time. My GP said it is stress related but a nutritional therapist said it was due to candida overgrowth and put me on a quite restrictive diet with very expensive supplements. Couldn,t afford the supplements long term and found the diet very hard so gave up after a month. My Mum has multiple allergies to antibiotics and all my children have exzema, M has asthma and Piers is lactose intolerant (although much better than when he was a baby). I blame (and this is just my personal opinion) the increase in additives/ preservatives and just the level of general pollution we are dealing with on a daily basis.

Hi and welcome to the forum.

Pretty much the same here always waiting for the next thing to slap me in the face. Try to keep as positive as possible but generally feel unwell most of the time and i know it is stress. We have so much going on and have to be constnatly juggling and everyone just expects us to get on with it as we are mums and it is our job. Give yourself a big pat on the back and keep smiling.

Hi Suzy another vote here for the National Autistic society I have found them very helpful and informative at times when we are struggling. They also run free courses for parents of newly diagnosed kids with ASD or AS which may help. I too walk on eggshells most of the time my son still has the most amazing tantrums and he is 12. DLA is definately worth claiming I use it to buy any visual aids or whatever i think may help. We have lots of books on ASD also (some unread i will admit) but they have increased my understanding. I can really recommend Luke Jacksons book Freaks, Geeks and Aspergers Syndrome as it is so positive and easy to read hoping to get M to read it soon. I still find ASD difficult to explain to others as it is so varied from person to person and I feel it is difficult to describe in a nutshell. on the whole though people genuinely are interested enough to ask what it means for us as family and are supportive and those that aren,t are not worth bothering with in my opinion. Hope it gets easier soon and you definately are not alone.

They all have them in Ms mainstream comp special needs or not. They are really for writing in their homework, recording awards etc and have thier timetables in them. We use Ms for informing his tutor of any issues at home and either she or his LSA acknowledge that they have seen it and what action has been taken. Used it this morning as he had a massive meltdown before school saying he isn,t coping with lessons moving between classes etc. I wrote a very rushed message and his tutor telephoned to say she had seen the message, discuss the issue further and had sent a memo to all his teachers asking them to observe him and be positve about lessons etc she has also instructed his LSA to be more directly involved as he doesn,t ask for help apparently. It has proved useful for us as like most ASD kids M will hold it all in at school and then let it all out at home, so as far as school are concerned he is a great success story.

HI Susan thanks for your reply. I know what you mean about food being a battle area M thinks we are punishing him if we try to suggest healthy eating although he does like fruit and veg. Last night i had to take one of the twins to A+E (he had pushed a berry up his nose) so had to arrange for my father in law to be here when M got home from school as you know how long A+E takes. This upset his routine for one thing but also because i was late home I couldnt face cooking so called of at the chippy, got chips for the kids and chinese for us. On the way home i was thinking M would probably have preferred chinese and it would have been slightly more healthy. I was right and we had tantrums all night apparently I had denied him the right to choose (from a child who can,t make and doesnt like making decisions) . We tried the gluten casein free diet for a while and although this worked for us and we saw some improvements in bahaviour my parents wouldn,t comply so it became another battle area again. The thing that gates me is he does like healthy food but just wants to eat massive amounts and doesn,t appear to know when to stop eating. He also doesn,t like being told what to do so if i say no he will argue till he is blue in the face and although I never give in this is very tiring. Exercise is another battle area he would just sit all day as i have said. We have been going swimming but i am shocked at how unfit he is can barely manage a width of the pool. I f the water isn,t deep he just walks on the floor of the pool and moves his arms a little and if i take him out of his depth he gets so tired i dare not push him. i figure though that at least he is moving a little so might do some good. We are going to up the sessions to twice a week to increase his fitness. Good luck if anyone finds any other ways to encourage fitness please let us know.

Hi Av so scary for you cant imagine what you are going through right now. Last year I found M slashing his feet in his bedroom shortly after starting year 7 in mainstream school. We asked our GP for a referral to CAMHS and were seen quite quickly.. Thankfully M has never done this again I think it was just a cry for help and although this last year has been very stressful it has brought us closer I think. We spoke honestly with M about how this made us feel and tried to find a reason behind it. Take care of yourself. <'>

After all the difficulties with M for the past year finally something to be proud of. We had to go to a family christening yesterday and we decided we would take M with us. Thought hard about it as his behaviour has been quite bad lately and this was DH family who have never met M although they are aware of his ASD. We had a long chat about how the day would go and discussed ways to deal with his stress if any occured. Church was great sat there quietly with his brother and sister although he quietly asked how much longer half way through the service. In the pub afterwards he talked to people and even bumped into someone he went to school with and with a little prompting had a short conversation. The best proud mummy moment though was when he came to me and said i am feeling a bit stressed is it OK if I go outside. He went outside and sat at the top of the climbing frame for a while till he calmed down then came back in. Hopefully the start of a better time of us. Thought I would post this as i sometimes feel i only post doom and gloom.

That would be enough to confuse me Julieann never mind an ASD child. M never uses his locker he couldnt be bothered with unlocking it and has now bent the key. He just leaves everything lying around the cloakroom and then wonders why they get removed. He has lost so many things i dare not tell DH. He has been quite calm recently possibly because I have really taken the time to explain everything to him and be very patient. Only one incident arose when i attempted to put peas on his plate and he had a meltdown but very good for a school week. Infact we were suppoed to be going swimming tonight but I had forgotten DH was working so had to cancel was worrried most of the day about telling him but when I did he just said "Oh well we will go another time it is not the end of the world". i was so shocked i asked him what he had done with Marcus. He of course didn,t understand this sarcasm so I had to explain to which he said I am not going to have tantrums anymore because they upset you and don,t do any good he then added he may have to have a few . hopefully he means it watch this space.

Hi spoke to SENCO yesterday who assured me there are no problems. If he was being as disruptive as he says she would certainly have been told and he would have been put in detention and i would have been informed of the problem. She said that he was very popular at school and everyone was looking froward to having him back at school. She said the LSAs fall out about who was supporting him and his year tutor had requested she kept him (I wish they could see him at home). I passed all this onto M and he admittted he had exagerated about the chaos he causes in class . He appeared a little happier when I left for work hope this continues. In fairness he has been quite calm this last few days but I have been treading on eggshells trying to keep such. The one strange thing the SENCO said is I explained about him wanting to be alone at breaks and she starting hatching a plan to introduce him to a girl in year 10 what don,t they get about him wanting to be alone. hopefully he will go this week and get back into a routine and with more input from me we may keep him calm. (watch out for the flying pig).

How does home ed work with regards to exams. i know they are not the be all and end all but how does it effect their future prspects if they have no GCSEs. M is capable (or so I am told ) of achieving a good pass at GCSE level and possibly going on to University. However he will achieve nothing if things don,t sort themselves out. He bagan to get bored in year 5 and played up a bit and I looked round an ASD unit and the head their put me of saying M sounded far too able to go their. He also said though that it depended if I was more bothered by GCSE results or being able to function in society. In year 6 things settled down again thanks to a fantastic teacher and LSAs who really encouraged M. Of course i want him to function in society but would like a decent standard of education as well (am I asking too much). The main problem is he has gone from a tiny primary to a fairly big comp (1 class in each year group now there is 6) they also have to move themselves from class to class and he just cannot organise himself enough to do this. I really don,t want to send him tomorrow but feel if i keep him at home I will never get him back because that is how he is. Will it ever get easier.

AS you know from other threads we have been having problems with Ds1 behaviour for the last year. He appeared to be coping everywhere but at home, school said they were having no problems, my parents having no problems but at home mega stressed and major meltdowns. I am not so sure everything is Ok at school though and maybe this is the reason for his stress. The other night we were reading a stroy and he said he didn,t want to go back to school He is just about to start year 8 in mainstream comp. I asked him why and he said he wasn,t coping with it, he felt stressed all day, got frightened when moving from class to class. Wanted to be left alone at breaktime and wasn,t given space to be alone he said he asks people to leave him alone but then they pick on him for wanting to be alone. He said the only lessons he likes are maths and IT and doesn,t understand anything in the other classes at all so he just sits and does nothing. He says he starts to try to listen but quickly loses the plot so switches off he then gets bored refuses to work and becomes silly so gets sent out of class. School have told me none of this and have said he is doing very well. He said to me that his LSA said she didn,t want to work with him next year as he didn,t cooperate. Having heard all this I am not surprised he is so stressed at home. On top of this i have been so busy with the little ones (twins age 4) I now realise he has been pushed out a bit for the last 4 years feel really guilty about this and i am trying to schedule in some time just for us but not easy as DH is around very little and have virtually no family support. I am waiting for the school SENCO to get back to me to tell her all this and ask why i wasn,t informed there was a problem. To make matters worse they are back to school tomorrow and i am on nights tonight so he will have to get himself up and ready with Dh overseeing(recipe for disaster). I have a term time contract and it is my 1st night back so can,t ring in for a sickday or anything. Anytips on helping him cope we have had a long chat about the problems but basically he just hates school. We briefly chatted about ASD schools but he doesn,t really want to go there either. Ideally he is wanting to be home educated but I work shifts and wouldn,t have the knowledge or the patience. Will speak to the SPED team tomorrow also anything else I can do.