justine1

Hi Sorry to be nosey but I notice you care for your husband to?You are therefore entitled to financial help to make adequate homeimprovements from what you have said that is no way for children to live,and as your hubby has arthritis I think a bath is better because he can sit in the warm water which does feel good even if just for a short time.I really think you need to speak to your council about this,also do you get carers allowance?Sorry probably invaded on your personal space!

Hello,first of all do not feel guilty being a mum is not easy and you will discover people much older that your daughter in their 20's even 40's discovering they have AS I am sure their mums did equally a great job as you are doing.My son is six(ASpergers) but so much of what you said about your daughter reminds me of Sam,he also doesnt acknoeledge others personal space and waffles on.Though he is sympathetic to feelings at times.I think you should go to your GP and insist on an assesment,make a note of all the things that trouble you giving a real life example of her behaviour.Try and make a diary before and after you have seen the GP,you may not say all of what you have written but good to cover everything think of what is most concerning to you.It may take time for the assesment so just keep writting when you spot something "odd" the only way you will know if its ASD is if she is assesed.Good luck,better late than never!

Thats great news!!!I am thrilled for you both,I do hope it continues,bet you gave him loads of praise!

This must have been a hard decision,I wanted to this and was going to go through the process but decided to educate myself furthur for now and then probably reconsider when Sam is in secondary school if there is a need.I was told you will get assesed on what you will be teaching etc. I think its each year they will monitor but it varies based on age of the child.They(education authority) told me you almost have to separate your home and "school" life and have a clear structure though you do not need to follow the national curriculum.There are many support networks,books etc. to help you through the process.You can also get a tutor in for those subjects you feel your child may need additional help.Really envy you,wish I could do it!Best of luck.

Thank you Tally.Just to clear things up.Sam has been told by a GP that it IS asperger syndrome(which at the time never heard of) he went for his first assesment one month later,two months ago,the lady who assesed him agreed it is Aspergers,but wants to talk to just him so has said to come for another assesment which I am still waiting for.Sice doing all the research Sam is classic case really,maybe not as "serious" case as others,his vocab/speech is fine in fact advanced and academically he is slightly above average.Dan on the other hand does not pronounce things correctly he has also always had a problem with spit,he sort of foams at the mouth when he talks and often spits when saying certain words,we try encourage him to swallow which works at times,I thought he would have grown out of this by now,he will be four in Feb.He also has certain cups/plates/forks like Sam does,he likes kit kat but has to be broken along the "line" and I cant touch it must be in silver paper.He wont pick anything off the floor and put it in his mouth didnt even do this as a baby when trying to explore things.He complains if the house is "dirty" and goes through five outfits in a day (Sam was not like this at all.)Thank you for your comments.

Thank you for this,yeah I will look at the link.My eldest also has some signs of OCD,my eldest brother and mum as well so very possible.He displays alot of AS signs but different to my other son so he may display signs similar to another AS child if I make sense.Then some other things seem copied.He does get angry but doesnt lash out like my Sam,he will rip things or bang his head,saying this Sam was the same at that age.I will definatley speak to a GP just so stressed already how do others cope with more than one ASD or other problems with kids???Thank you.

Hi everyone my Sam (6) has AS and for a year has been really close to his brother Dan (3) they are always together and love the same things,Dan seems to understand Sam more than anyone.My problem is,Dan seems to have lots of trouble making friends and seems really shy outside of home,he started preschool in April but seems to ignore the other kids,at home he draws the same pictures over and over and humms alot,when I ask him a question its just simple "yes" or "no" then straight back to huming(dont know how to spell.He has had problems with speech and got his hearing checked two years ago,he kept saying "bad" instead of "dad" and "doat" instead of "boat"mostly got the b's and d's mixed up,well they said his ears are fine.He also has trouble eating and I have taken him three times this year to get advice on this,of course they say just give him what he likes,spag bol and mcdonalds cheeseburgers not exactly healthy.I wanted to know if his behaviour is copied by Sam,Sams behaviour changes I noticed since he was two WEEKS where as Dans I only noticed last year befor ehis second birthday,some of the behaviour is not exactly the same and the food is often opposite ie.Sam likes egg yolk Dan likes egg white.I also split from their father around the same time last year Feb and Dan was really close to him they would eat,bath play together,so not sure if this is the problem,though its been nearly two years and he seems settled otherwise.His behaviour is getting worse,he swears and fights with his brothers,he also is obsessed with germs,everything is dirty in his eyes.I am still going through assesments with Sam so feel at a loss what to do,should I wait until he is at full time school?Any advice please!

I am so sorry you having a hard time.Not sure what to suggest for the hygiene other than keep constantly reminding her of the importance of this ,not just for everyone else but because she will get sick and end up in hospital.I just have a thought,you may need to take her to the Gp to discuss furthur invistigation,it is not uncommon for teens/adults to have this problem but usually its phsciological(excuse spelling)for example moving to new house,school or experiencing or witnessing something traumatic.If it is none of these,which can only be helped with councelling,it may be she has a bladder condition,there are many!So she may need scans etc. to determine this.My son is 9 he is not AS and doesnt bed wet but he is going through tests as he needs the toilet constantly and has had three infections this year,and he is cicumscised so not sure why this is happening he is very good with hygiene in fact a bit OCD at times so I know its not that.Anyway really think it will be worth it to see a doctor.

There is nothing you can really do about what the other carer wrote,though I have not worked with ASD peoplo I worked in home for elderly some with Dementia and other mental health so have encountered this,and it does happen that people report things differently.If you were the carer who calmed him down this should be made clear then your own statement would have more weight,ie.where I worked certain carers responsible for certain residents.Also were you told at handover what happened that made this person so upset,you mentioned a headache prehaps he was in pain and nobody acknowledged this which is what upset him,you should make note of this to.Prehaps explain to management,that you did not see his behaviour in the same way the other carer did,I have heard cases where if these reports are made the resident may be moved around constantly because they seen as "troublesome"I dont think this will help the situation.Good job on remaining calm its not easy!

Thank you so much everyone,things have been hard these 20 months I am lucky enough to have family support,so many women not in that position.It is good to get the perspective from other people because of course my family would take my side so to speak so would not know if I am in the wrong in the situation,which I do believe I am not!I am just so grateful for all the great responses.Thank you Js mum I have heard of relate my life has just been so hectic,left my ex last FEB then had a baby in July then I started a course in Oct (last year) I am now about to do my exams and started three more courses,plus taking care of four boys alone its hard to find the time.I really think I do need talk to someone and really start getting my life back it often feels like I take one step forward five steps back,I believe he still has a "hold" on me,its hard because he is the father of my children and my parents got divorced I said I never would,and dont believe in it really its just the whole situation is unbearable.I am a strong person though and my kids are great each morning I get up I am so grateful for everything I have.Thank god for all of you,your words mean so much!

Wow!I thought I was the only one feeling this way about mainstream school,so sad!My eldest son told me today that the teaches have come to him on numerous occasions to come and settle my AS son,this is so unfair to my eldest he goes to school to learn and to get to socialise with other kids not to care for his brother.Feel like screaming.

My son did this when he was two/three,he used to say he wants to go in the aeroplane to his other mummy it was a bit confusing but because of his age I just laughed it off,my mum lives abroad but he only met her once for three days when he was 3 months so no way he could remember her!I am sorry dont know what to suggest,have you always lived in the same home?does he ever sleep anywhere else ie.grandparent,cousin etc.maybe when he is scared he may want to be at that place???

Hi my six year old has the same problem with maths,he is great at maths on paper but if I ask him what is 1+1 he cannot answer,if I write down 10+45 he can write the answer,although his letters and numbers are at times facing the wrong way,get what I mean.I really dont think you should worry but this is providing she is getting help,she may take longer to catch up but with the help she should be making some small progress if not then seek furthur help.By the way I think some kids are good at maths some are,how is her literacy?she may be doing great at literacy.We use different parts of the brain for these subjects so it may be that it takes that part longer to process sums etc.She will be fine.

teapot and cup and saucer set.always useful!

Hi My eldest son was born at 39 weeks (NT)My second son was born at 38 weeks,he has aspergers,he also had very low birth weight and the delivery itself was really quick,I knew I was in labour at 11pm but was sent home,came back in at 12.30 and he was born at 1.20am.He did have has seight monitered for 8 mths and got two bad chest infections before that time.My third son was born at 37 weeks,he may also have AS,he was very healthy weight.My fourth son I wanted to be induced because I had separated from their dad and my family were going to care for the other three when I gave birth so had to know date,when I arrived to be induced I was already 6cm dilated,he was born two hours later,at 38 weeks,he had many complecations but is healthy and very big for his age because he is only 15 months I dont know whether he has AS or not.He can talk(6 clear words) and babble,he walks and plays very well but he does love to "read" books even at the dining table when he is meant to eat!I dont know if the birth effects the outcome of AS but it has been proven that boys are more likely to have AS so that may explain your own situation.

Thank you so much Karen and Kathryn,really appreciate your thoughts.Karen it must be hard to open up about such personal feelings,so thank you so much.I guess as everyone has said it should start with him and to be honest he has had nearly two years,since I left,to start taking action and change his attitude,but he can be nice at times lovely really.Then he starts being controlling I think as an adult I have a way of dealing with this but my kids suffer alot,for example my eldest loves dr.who but his dad says its "evil" and he must not watch it,he doesnt allow them to play with "certain" types of kids and puts lots of pressure on them to study and be the best.I also want them to achieve things but try to have a good balance between work and play.My son used to have severe asthma attacks on weekends when my ex looked after the kids when I went to work,since I left he had asthma once after a cold.Sam(AS) also used to self harm and rock when we lived together but doesnt do this anymore,so I guess in a bigger picture its going to cause more harm than good being a family.Thanks again.

Thank you Tally That really made so much sense needed that!

Hi all I do not usually post on here because I come here mainly to seek advice about my son.I left my husband 20 months ago,we had been together for 8years,our relationship was hard from the beginning because of mainly outside influences,but over time things became more and more difficult.He was extremely possesive and controlling,he never believed anything I said and felt I constantly had to prove myself to him.He seemed also quite selfish in that he would often buy himself more expensive clothes then me and the kids and generally put himself before us,not that we went without anything but I did feel I gave alot and got nothing back!He was never affectionate which was hard for me because I am really affectionate.His controlling got so bad that after a row with my brother he "banned" me and the kids from seeing any family,this happened two years before I left,I wanted to leave then but for financial reasons it was not possible,in the two years I often sneaked around to see my dad and brother,he found out twice and was really angry.He also gave many excuses when the kids were invited out to tea or partys,so they hardly socialised.Why I am writing all this is because I have not stopped loving him and see him every weekend when he sees the boys he wants us to be a family and does not even get why I left,I was told when I went to the GP for my son that she is 98% certain my husband has Aspergers,now I feel like I treated him wrong but dont know if I can let my family go to be with him.I have tries talking to him many times,I said I will visit them once a month and will even go without the kids but he is still not pleased with the idea.He will never admit my son has Aspergers and definatley not himself,so wont even get him to get help.I mentioned counselling for us for three years no luck.What should I do!!!!

I am sure you did see I used the word "many" not all!I do believe that autobiography's are a useful tool but again it is based on the individuals life so at times you cant apply their own techniques etc. to your own/childs life because we/they are different.My brother suffered three strokes since the age of 23,he has found just one book out of millions that he can relate to and the medical profession do not know how or why he got a stroke and there are few funds to do research into cases like my brothers,the same goes for Autism.I think everyone on here is well informed prehaps not about your situation but on their own so nobody is here to cause offense and apologise are made when appropriate,this is a place to share and compare opinions.So sorry if I did offend you!

Hi Are you sure you were given amitriptyline for pain?Sorry know it may seem silly but as far as I am aware it is used primarily for depression.Have you tried codeine?Or morphine in liquid form?the latter can only be obtained with prescription.I am not 100% certain but they are mainly from plants- cellulose,so dont believe they contain milk.But like others have said seek medical advice.

Hi everyone Okay this is going to be a bit of a moan,so sorry in advance!My eldest son( 9)told me two weeks ago that his teacher is off for four weeks due to an operation,fair enough she is only human!Now Sam's teacher is off sick for a week too,what makes it worse is that it is parents evening this week and I cannot see either of the teachers!GRRRRR!I am not worried about my 9 yr old he is doing fine and spoke to his math teacher few weeks back and said he is a genius!Of course I am worried about Sam,he has had so many problems and wanted to talk about an action plan and certain other things.I realise they will reschedule but next week I am writing an exam,and have an essay due so wont have the time and then of course its half term.Sam complained about the temp today as well of course its unlikely she has been given the "low down " on his behaviour,so he yelled at her bacause she told him off when he was simply telling other kids that "not everyone is christian" but apparently other kids felt traumatised by this remark!!!Anyway I feel like keeping him home but know when he goes back he will be worse off,just so mad!

Hi there My son was assesed recently but not at the same place you mentioned.I was told by the GP I may have to wait up to six months,I was stressed but I have been handling him just fine for six years a few months wont hurt.In the end we only waited 2 months.The assesment was not what I expected,quite simple really.Instead of me boring the Doc with info she asked lots of questions and I answered,obviousley as my son is six she watched him play and asked him a couple of questions,it lasted an hour I hardly mentioned even half of what Sam is like,she said she wants to just speak to him at the next assesment,but she is certain it is Aspergers.The whold thing lasted an hour,no scans,no bloods nothing like that,though she did measure and weigh home and watch how he walks and runs.I know yours may be different as you are an adult,but just remain calm,take your mum with again if possible if not for anything just support.Good luck.

No offence but you seem very arrogant and sure of yourself.You keep refering to NT and AS people and saying "people like us" when you have not even got a diagnosis.You refer to "normal people" there is no such thing really!You seem to have read alot but I must tell you many people who write books have no idea what Aspergers is like,they do it simply to get a profit,and it is the same with many other syndromes and medical conditions.I have been on various sites for three months now and have heard very strange and worrying statements about Aspergers.As other members have metioned The traits of Aspergers and indeed other forms of ASD vary just like every person is different so is every person with ASpergers.I think you should have come on to the site telling a little about yourself and saying how you are awaiting an assesment,but you have offended me and others.Anyway I realise you have apologised and I do wish you luck in your diagnosis which ever way.

We also cared for my grandmother when she was dying of cancer,it was not in the UK it was abroad,I was 11 at the the time,it was very stressful,unlike your situation we did not have home carers we did take her to the hospice for morphine when the pain got bad but this was often no more than three days,my aunt and granmother lived with us and the bulk of the caring was done by my aunt.I think even living under the same roof as extended family can be hard not to mention when someone is dying.The reality is if your mum is not willing to talk about it things wont improve especially if she cant speak to your father.Also it seems like you also need the help as like you say you are desperate being in that situation is unhealthy and will affect you long term,I believe you need to go to the GP and express this to them they may get in touch with other networks that can help,I know you say your mum went but if she is as you say proud she may also be in denial about the situation.It should not be a case that when your nan dies you are all relieved of the burden,you need to get help now.I know what you say about the younger carers and understand the frustration but you could ask about direct payments so that your nan can chose the person she wants and pay for it herself.In my own situation my parents got divorced aa year after my nans death,but it was a build up of other things and my parents had been arguing since I was little I just think when you get older they think its more acceptable to argue in front of you and it probably seems worse.I cant give you a simple solution to this because there is none you really need to seek help.

Hi there I dont really know your whole situation but I have experience of working with the elderly and doing course work on situations like your own.As a carer your mum is entitled to some help from home carers so that she can have a break,it may only be two-three hours a day but it gives her time to take care of herself and other family members.She may be able to have some alone time with your father and talk about their feelings,counclling may also help.Firstly she would need to make contact with social workers to asses the situation to gain funding etc.I think she must feel really torn between caring for your nan and her other family members.I think you should also look at online or community support for carers and family.I dont really know where you are based but you should come up with something if you google it.Try and encourage your mum to take a break and that that is what you want for her,the best thing is to express your feelings to her and your dad.We dont have control over our parents feelings unffortunatley and there may be more than one reason why your folks argue,I know its hard but it will come to a head eventually either in a positive or negative ie.separation but it is nobodys fault it is life and sometimes people are better off separating temoprarily,especially if your mums priority is your nan.I just really think your family will need family counselling,it is imporatnt for you to all voice your opinions in a safe contrlled environment.Good luck and stay positive,try and take a break for your self as well.