joybed

Hi all i have just started my own blog spot. My main reason for doing this is that life appears to be running away with me, half the time i can,t remember what i did yesterday so this is kind of a diary for me. It also puts things in perspective when i need to look at the events of the day IYSWIM. My other reason is that I want people to know what it is like having a child with ASD as I quite often get total misunderstanding of my circumstances. I either get people thinking i use Marcus diagnosis for priveleges at work (ie special working hours), or get sympathy and treated like some tragic individual who can,t cope with her own kids. So this is a frank blog about my life both past and present. It is a very honest account of day to day life with one child on the autistic spectrum and another undergoig diagnosis. I understand that this isn,t for everyone but i just wanted to show that life with an ASD child isn,t all doom and gloom but also wanted a real life account of life as it is. If you want to take a peak at my world, the link is below. Their is some really cute pictures of my children although i am biased. www.joybedford.blogspot.com

Piers and lydia are both in their nativity play and things were going realy well both have rehearsed well and were loooking forward to it but today at the dress rehearsals Piers refused point blank to even stand up let alone sing. school have never had problerms with him before and were always disbelieving when i said we had problems so now they are seeing him as he is, an anxious little boy who refuses to comply with anything. He is assessed for ?PDA/ ADHD next week so i suppose he has timed it right but yes it does make me very sad.

I am now feeling really confused. I sat down with marcus yesterday and we wrote a list of all the positives and negatives regarding school. the negatives far outweighed the positives. M was very upset when he came home from school yesterday couldn,t tell me specifically what about but very distressed. We had an awful evening with all 3 children the 2 boys very hyper combination of christmas, school nativity etc. Lydia upset by the behaviour of her brothers. DH came home and was unable to cope with the complete chaos of home and we had an argument. i then did a night shift. Came home this morning Marcus didn,t want to school and was upset, feel bad now but sent him as not able to make a decision due to lack of sleep. Had a disturbed sleep today with various phonecalls from SPED team, school. Parent partnership just gone who were wonderful. Have information on the special school i would like him to go to but after dicussing options with Marcus he doesn,t want to go to a special school mainly because he will have to travel miles to the nearest suitable one. He wants either flexi schooling or HE. SPED team feel flexi not an option as will confuse Marcus they also don,.t want me to take him out of school at all as they feel we will never get him back again. My gut instinct is to have him signed off but my manager won,t give me the time of work next week. Really in a dilemma. Will see what kind of a day he has had and get back to you. If it is bad he won,t be going tomorrow.

Hi Cat can i have a copy of the OFSTED report please or can you point me in the direction of where to access it. Marcus came home from school quite happy yesterday and went to school without too much of a problem (apart from he has lost yet another piece of essential equipment) so I didn,t think it was appropriate to not send him this morning. I have spoken to the SPED team again today and they said they did put in a specialist LSA yesterday but Marcus wasn,t told she was there, they said he coped well but had an LSA sat at the side of him the whole time and Monday is a good day for him, also not observed at breaktime. So feel this isn,t representative of M at school. They are now suggesting keeping him in school until a meeting has been held and i have spoken to parent partnership. They feel if he is taken out of school then we will not get him back and will end up HE all the time (TBH I don,t care anymore as long as he is happy). I have told them he will continue to go but at the first sign of any stress i am getting him signed off sick as i will not put him through the stress anymore. Not sure she was very supportive of this decision but M comes first. After making the decision to HE yesterday i was dissapointed his day had gone well, that sounds horrible doesn,t it but after the weeks of stress i finally felt i had an answer and then he comes out of school all chilled and having had a good day but i am sure it will revert again. Will need lots of support if i do decide to HE as I don,t feel i am intelligent enough to do it really particularly regarding Maths.

Marcus actually says he had a good day today but couldn,t tell me what exactly was different about it. He is still very stressed at home though, i can always tell by his behaviour at home. DH is very against even flexi schooling partly because he worries how i will cope and also because i work shifts and he is worried i will get no sleep when on nights etc. I feel that to have my happy little boy back would be worth the extra work. I have just returned to work after a couple of weeks off with stress and my manager basically made me return to work and said i could work whatever hours i liked as long as i went back. I have negotiaied to work 1 night shift in the week and a 15 1/2 hour shift at the weekend so home ed is possible. My parents have offered to help but this in itself opens up a new can of worms as my Mum and i don,t always see eye to eye as i have previously posted. I have found a suitable school but it is out of area and i am not sure we would get funding, nothing in area suitable. I am going to make an appointment to go and see the school tomorrow. Last week we had a major incident of bullying Marcus was pushed over at breaktime this really unnerved him and really made him scared to go to school. The school did deal with it well though. The PE is a major hassle even though they have decided to let him do alternative activities this school year thay have said he will have to go back to it next year as it is the law they have to do PE, is this true or can exceptions be made. I am angry at myself as i had reservations about sending him to mainstream comp anyway but was talked into it by the school and the SPED team saying he was bright and could cope. He is so obviously different it makes me very sad but also extremely protective. Unfortunately i have little support at home as my DH doesn,t understand his ASD at all and tends to be really strict and handle things wrongly IMO. Their is a lot of tension between DH and Marcus and i am piggy in the middle. I thought it was because Marcus was his stepson but i now realise it is directly related to the fact he can,t cope with his ASD, i have realised this as my other boy is undergoing assessment at present and DH has said that if he has special needs he will find it hard to bond with him, he openly shows more affection towards our daughter as she is normal (his words not mine) and this really hurts. if i do anything for the boys that doesn,t include Lydia i am accused of spending more time with them. All this is very stressful as you can imagine. So how do i go about removing from school do I have to deregister him or do i just contact the SPED team and say i want alternative provision making. His statement is due for review in February. i am seeing parent partnership on Wednesday and she said not to do anything until i had spoken to her as she was going to look at options. The other thing i have just remembered is that the SPED team said they were putting somebody into school today to observe him and according to Marcus this didn,t happen. Maybe i am paranoid but i feel we are being let down by the system and they are just using my son as a way of showing they can cope with ASD in mainstream or am I becoming cynical . We shouldn,t have to fight like this for our kids rights. Dh has told me not to rock the boat too much as the other 2 have to go their eventually and they are a good school but B#####ks to that I will continue to fight for him no matter what. Also if our other son has special needs i will probably have to go through all this again so its good practice . Thanks for your kind words of support and excellent advice. I need to get reading about home ed if that is the way we are going (I know it wasn,t too long ago i said i could never home ed I am now eating my words). Thanks again.

Hi continuing from my post regarding flexi schooling Marcus continues to have a really bad time at school. Even the little things are getting him down now. Every night he begs me not to send him to school and literally sobs it is breaking my heart. The SENCO has been failing to return my calls and his tutor never responded to my last letter so in shear desperation i wrote another letter last week which was polite but basically said i was concerned for my boys mental health and that i didn,t think mainstream was the correct placement for him. I also mentioned that parent partnership were now involved as well as the SPED team. That night i had the deputy head on the phone saying that he was sorry it had come to this and he would try to help M as much as possible. The following day M is no longer doing PE for the rest of the year which made him a little happier. On Friday night the SENCO left a message on answer phone saying she wasn,t aware I had been trying to get in touch and left her home phone number. DH thinks she is now scared for her job as i know the SPED team have put in a complaint regarding her attitude. She was very apologetic when i rang her back and said to call her whenever I needed to. However after all her reassurrance she still said she thought M was attention seeking . I really don,t think this school are going to change and hate sending M to school every morning. The SPED team suggested i withdraw him until a suitable ASD placement can be found but i am concerned they will then not try hard to find a suitable palcement if i am doing OK HE. Also not so easy when you work 30 hours although i can work ariund this, any suggestions. Do you think i should withdraw him.

Hi after saying i would never home educate i am now considering flexi schooling Marcus. After sitting with him last night sobbing yet again over school, incident of bullying, forgotten homework and the idea of PE today I felt really guilty sending him today and felt like i was pushing him to the lions. He has some days which he can tolerate at school and others like thursday and friday which are just torture for him and he can,t sleep the night before and feels physically sick with nerves. So i was thinking why send him on these days. I could do some kind of PE that he likes at home such as swimming or walking, better than him standing around on a field, cold refusing to do anything. Of course all this depends on school and whether they will support me, i have spoken to our local education otherwise advisor who was helpful and maybe i could do it. I have also discussed with my boss this morning about making my working life easier and have slightly reduced my hours and altered my working pattern so i could fit in 2 days HE and still have 1 day to myself. Anyone doing this, can anyone see a downside. The only ones i can see are school refusing, DH/family not being happy and Marcus refusing school altogether after being flexi schooled a while.

Why didn,t i keep my mouth shut about the next time Marcus is bullied there was an incident on tuesday. A boy ran at marcus calling him a freak and pushed him over, he stumbled and corrected himself but then tripped over a passing girl and fell into a wooden bench knocking his front teeth (thankfully no damage). the boy then blaimed the girl saying she had pushed marcus. Marcus knows this isn,t true as he likes this girl and she was upset about the incident. Marcus didn,t report it as he didn,t want to get the girl in trouble as this boy was blaiming her. He only told me about it the next day when school was closed for a teacher training day. He was really upset partly because his teeth are still painful, concern for the girl and also he can,t understand why people do this kind of thing . I have telephoned school this morning and thankfully Marcus has done as i asked and reported it to the SENCO I spoke to his head of year who assured me this boy will be dealt with. Marcus was also concerned that the boy in question would be excluded, both DH and i said to him that he shouldn,t bully and if that was the outcome he was his own fault but Marcus was very worried about this boys ufture if he was kicked out of school Bless.

I think you just vomit with a high temperature all of my kids do. Both myself and DS1 get tonsilits a lot and we both vomit. As a teenager i used to lose about a stone in weight every time i had tonsilitis as i couldn,t keep anything down at all, shame its not like that now.

That is just awful schools don,t think at all sometimes do they. Twins are so competitive anyway what a horrible situation to be in. Hope you get it sorted.

Hi all I had a phonecall from CDC today and because of Piers age they really want to push the assessment through quickly so if their is a problem he can access help quickly. However the earliest CDC appointment is in May so they want him to go for an individual assessment with a paediatrician on the 17 December and then a team meeting if necessary. I have to take him for an hearing test tomorrow. I can,t believe this is happening so quickly. My only concern is that school are not accepting their is a problem even though they have had a few difficuties. He also tends to behave quite well when we go to the hospital, I am worried this will prevent a diagnosis being made. I am also worried his Dad will go in and say their isn,t a problem and that i am not strong enough with the children or that he just copies marcus. I am keeping a diary of events and concerns i have regarding Piers do you think this will help. Any other advice greatly received, been a long time since Marcus was diagnosed and I now feel slightly sick.

Hi Mummy not recieved a PM from you yet.

Sounds perfect to me. Will have to remeber that the next time Marcus is being bullied.

Piers has great difficulty sticking with anything even if he has chosen the game. He really likes a game called tumbling monkeys but he finds it hard to wait for his turn and rather than throw the die he will just jump in and take his turn. He soon gets fed up and starts messing around. He doesn,t like colouring or lego etc. When we play with playdough he spends most of his time disrupting lydia and breaking up her creations throwing it around etc. He watches TV for a minimal amount of time and then starts jumping around all over the place pretending to be sportacus or spiderman. He is really rough in his play sometimes intentionally and other times by accident. An example os his impulsivity they got a reflector at school both of them loved it and asked for it open while walking home Piers saw a great and posted his down it and then realised he wasn,t going to get it back and cried for ages. As I type this he is messing about with the printer and not listening to me as i tell him not to so i will leave it here and look in later.

Hi all Is the only difference between ADHD and ADD the amount of hyperactivity displeyed by the affected person. As you know i am awaiting a referral for Piers tto CDC and have noticed that amongst other things he has little concentration and is very innatentive as well as impulsive which fits in with ADHD however although he is hyperactive at home he isn,t at school he is actually the opposite and at the moment is a little passive. He tends to moan a lot at school and cries to get out of doing things and is reluctant to join in with the others unless it is on his terms. He has also been argumentative at school and uses lots of excuses to avoid doing things. At home he is reluctant to learn his letters, look at his books and do the maths games and we have a learning at home book which to be honest i struggle to write anything in for Piers I try to engage him but he just refuses to do anything. Lydia on the other hand is very keen to learn and I feel guilty as i spend a long time with her teaching her her letters etc but Piers just ins,t interested in learning at all if pushed to try to do something he becomes very nasty. How can i increase his concentration.

Stella hope he means what he says, good luck on Wednesday I will be thinking of you.

I almost do, Lydia tells me what Piers gets up to, the beauty of twins. Today she told me he and one of the other boys got into trouble for throwing tissues at each other. I can see Piers hating being in the same class as his twin before much longer but great for me.

Don,t really have any advice but just wanted you to know i was thinking of you. Maybe now you can start looking into a suitable placement that will meet his needs. I know what you mean by what i am supposed to do, I am always being told i can,t put so much effort into Marcus at the detriment of myself, apparently i spend too much time fighting for my kids, but what kind of a Mum would i be if I didn,t do this. I am the only one who can get their needs met and yes i get stressed and tired but thats the way it is. Try to take of yourself and the others. Hope things settle down soon. sorry i can,t offer any constructive advice. PS hope your little girl is the perfect little princess mine is, it is so nice having a little girly and has really put me in touch with my feminine side. I have never worn so much pink as i have in the last four years, I even had pink hair extensions at one point.

My DH doesn,t cope well with any aspects of my sons ASD. He tries to do his best for him but becomes easily frustrated and angry with him. He is devastated that our younger son is also undergoing assessment and tells me everyday that their is nothing wrong with Piers it is Marcus bad behaviour that influences him. We have talked about this till we are blue in the face but he just can,t cope and i don,t really think he wants to. He sometimes makes unhelpful and very hurtful comments like "can,t we just send him to live with his Nanna" or "I wish we could get him into residential school because then he won,t cause us so many problems". At times i have hated him for these comments and have nearly left a number of times, but underneath all this he is a good man who won,t let anyone else say anything bad about M and he is trying by attending family therapy. I also think he was a brave man to get involved with me when i had an ASD son but on the other hand I was honest with him from the start so he shoud have walked away if he couldn,t cope. As for supermarkets thay are a nightmare both of my boys become really overstimulated by the bright lights, colours and the noise levels. Piers always has a huge tantrum and Marcus usually starts vocalising, I send DH now, go on my own when they are at school or shop online I really do symapthise here. I also agree with you that our children should be allowed to go anywhere they want and always have taken them along. i am not easily embarassed and can handle the odd uncaring person who talks before they think.

My son has always had problems with his bowels and has tried every laxative on the market. We have had to put up with some really bad times where he would soil in bed and be totally unaware of this so it would be in his hair sheets and all over his body. We all found this very difficult to cope with and at times it was hard to stay patient in the early hours when you were bathing a distraught child who had been woken as he was unaware what had happened and washing sheets, PJs etc. This went on till he was about 7 and then thankfully stopped once his medication was sorted out. We still have occasional soiled pants and I need to increase his meds at these times i have become good at manging this now. So good i managed to stop the same situation occuring in my daughter when she started soiling when she started school. We had a different problem to you last night Marcus is so scared of touching poo he uses loads of toilet paper so he has no chance of his finger going through it. Last night he used a full roll and blocked the toilet. I too found it difficult to contain my displeasure and made him stay with me and help while i unblocked the toilet (which took over an hour). He is now rationed as to how much paper he is allowed and has been told if it happens again he will lose his pocket money and if a plumber is needed he will pay for that too. This may sound harsh but it is not the first time i have had to do this and he though tthe incident was funny so had to do something to make him understand, good job i have a strong stomach.

Thankyou all for your support and advice it really does mean a lot. i spoke to my GP and she agreed I was under too much pressure to continue working, she agreed with me that i really can,t afford to make a mistake at work as potentially lives could be at risk and I would never forgive myself if I made a mistake. Work were understanding when i rang them even though that left them short staffed for nights and just told me to look after myself. It is a relief as I have so many appointment for all the kids at the moment that work would be difficult to fit in anyway. MY GP gave me 2 weeks and in that time i plan to maybe join a gym (something I previously enjoyed very much) so I can do something for me and also shift some of the weight i put on with the twins (no laughing matter either). If i still need time after that she said to go back to her. I have a very sympathetic GP who has similar problems with one of her children although they chose not to have him diagnosed. This morning i took Marcus to GPs with yet another ear infection and he has a dental appointment this evening in which he is having a treatment to a tooth that hasnt grown properly and then having a cap fitted next week so psyching myself up for that (I doubt very much he will let them do it, the dentist is going to have to be a very patient man). We couldn,t afford for me to give up work unfortunately and i mentioned to DH about reducing my hours and he said we couldn,t afford to do that either (large mortgage, credit card etc). We will have to think again though as I am going to go under and that will obviously affect everyone. Considering changing my job to daytime hours so at least i will get regular sleep but don,t know to what have lots of serious thinking to do. DH is trying to persuade me to do health visitor training and whilst this would be great the course is hard and at the moment I don,t think I have the time. I considered school nursing but huge drop in salarie. Lots of decisions to be made. Will keep you informed. Thanks again.

So sorry to hear this has happened. These people really are skum. Hope JP is OK.

Hi this is yet another moaning post that i have thought a lot about before about posting as I hate to appear like I am not coping, but the truth is I am not. I am strugggling to hold things together to be honest and feel like I am juggling lots of plates that are threatening to fall in a dramatic way. I won,t go into everything as that would take too long but some of you know from my other posts that i have a 12 year old with ASD struggling in a school that don,t really understand him to the point where the only release is self harm and tantrums. My youngest boy is awaiting assessment for ?? PDA ?? ADHD and so also has lots of tantrums and is very aggressive. My girl is piggy in the middle, becomes very upset by her big brothers tantrums and little brother regularly is very aggressive towards her. I am trying to meet the needs of 3 very different children and also my DH who prefers to bury his head in the sand. I don,t get enough sleep and feel ill all the time. I am awaiting surgery and don,t know how i will cope with the kids after this. On top of all this I have work, I work as a midwife on delivery suite and work shifts. Part of me thinks work is a break from the day to day pressure of home and i can cope on a fairly quiet day but when it is busy I really struggle. I am terrified I will make a mistake and do something wrong but equally as terrified as going off sick and people thinking i can,t cope.The other part of me thinks if i took some time off and did things for me (which i do very little at the moment) and got the chaos of the messy house sorted i would feel better and cope better long term but not sure this is the answer as the problems will still be there when i go back to work. I know i shouldn,t care what people think and that I have much more on my plate than anyone else but i hate to think people are criticising me. I am on nights today and dreading it, I normally love my job but not at them moment. Any advice on coping with all this. Sorry to moan I am normally a very positive person honestly.

Thankyou all for your relies he went straight to sleep tonight but he has earache again. Some nights he sleeps badly others very well could we still use melatonin.

My DS1 has just been discharged from Paeds where he was being seen for constiapation and soiling. Soiling stopped and maintained on meds which GP prescribes so no need to trail to hospital. Before he was discharged I was going to ask him to prescribe melatonin but before we went for the appointment Marcus said he no longer had sleep problems so not to bother. Last night put him to bed at 21.30 as usual but in his room till gone 22.00 reading talking etc then left him. At 23.30 i went upstairs with some ironing and he was still awake and upset because he couldn,t sleep. He then said he often has this problem I pointed out to him that he had told me he no longer had sleep problems and he said he had forgotten he did again . So we now don,t have a paed to prescribe, he is seeing CAHMS but only a family therapist. Can my GP prescribe if necessary, if they will as they argue over his Movicol.