justine1
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Posts posted by justine1
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I think Sally44 verbalised my thoughts better than I put them across. I was not suggesting that the OP's daughter does not need a diagnosis, just that perhaps it would not be a cure all.
Justine1 I have bounced between the need to get a dx and not for years. You say 'if indeed he does have AS' Bearing in mind his father has AS, and that I work with youngsters with AS and autism, and I have been advised, without having asked for advice or even mentioning the subject, to seek a diagnosis, I hope I would have some idea (though I do not claim to be an expert). Part of me would love to get a dx, but at the moment I don't think it would be a good thing for him. Things as they are, we don't need one, educationally things are good. I am aware, through his father, how difficult it can be as an adult to have it confirmed.
I apologise for appearing so opinionated.
Of course it is your choice whether or not to seek a diagnosis and you probably right in thinking he does have AS as you have a strong knowledge of AS. However I was just pointing out that you talking about labels but you mention "my AS son" not just "my son" which is a little contradicting IMO and at the end of the day you cannot really say he has AS when it has not been confirmed by a professional no matter how much experience you have with AS,but again thats just my view.
You do have a point that prehaps it is not always necessary to get a diagnosis if one is coping,but I just feel as a parent its always good to get things confirmed. If my children are sick I take them to the GP to get medicine or advice and likewise if there is any delay in development I would seek advice on what the problem may be and how I can help my child. Regardless of how well they may be doing at that point in time.
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My mate phoned me saying she'd cried the whole way through,so I watched it.i thought the twins parents said a lot of things about that related to how a lot of parents must feel,that was the only thing that made me tearful,but saying that she didn't get any enjoyment from them,I also find hard to understand.did anyone see Melanie Sykes talking about her sons Autism on This Morning?
Watched Melanie Sykes I did like her idea of the poster of signs for autism similar to the meningitis posters.
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Don't mean to sound negative, but will a lable for the behaviours make them any different? Many of them sound like my AS son. I have had teachers and others encouraging me to get a diagnosis but he is does very well at school so I really don't see the benefit of giving him a lable that means others make opinions about him before they've met him. He is a quirky soul and I love him for it. Others can take him for who he is, or not. The good teachers have and will get the best out of him, those who don't 'get' him will not magically become able to teach him better because they are told he has AS. I am not going to have any more success in making him believe that basic hygiene matters (don't ask!), that he can look at and answer the neighbours when they speak to him, etc, etc, because he has a lable.
(Though perhaps if I'm entirely honest I sometimes wish he had a tee-shirt telling the world,so people don't assume he's just rude).
The physical, fidgety side though sounds more like my (NT) daughter. She is not still until she has run, swum, jumped, cycled off more energy than I have in a week!
I guess what I'm trying to say is that IMHO behaviours that are not typical of the majority don't always need to be viewed as a problem if they are not really causing one.
As for the questions again and again, after explaining clearly why or what and making sure it is understood, I have always answered that " Last time you asked the answer was ......Every time you ask (?timescale) the answer will be ............." It does not make it any less frustrating but at least it stops me having to explain everything every time the question comes.
Just about to hit post, then thought, and I am probably creating a peculiar theory! But I kind of get the caring more about animals than people; Children that like animals 'like dogs' and or 'like cats' or whatever, but even as adults we rarely 'like people'. So a random person with no emotional attachment being ill/dead is not as sad as a random animal. Sorry, that made sense in my head, hope you understand what I'm getting at!
Sorry but how can you say "...my AS son" if he does'nt have a diagnosis?? If you don't want to "label" him why are you referring him as your AS son,thats not only "labelling" but also false in that he has no dx, IMO.
Getting a dx is not about a label,I cannot think of one person who would go out to get a dx for the label. Its about getting the necessary help. While your son may be coping now who is to say he will still cope later on?(if he does indeed have AS) and given the difficulties many face in getting a dx as an adult don't you owe it to him to know for sure? Alot of the time schools and social services will say you don't need a dx to get the help but I know from experience it is not true and know so many who will agree the only way they/I did get help was by getting a dx. In my son's case I was pushed by his school to do so after they had tried to get an ed psych in for 6mths without success. Once he got his dx it took just 1 week to get an appt with the ed psych who went into the school 2 mths later.
It is always worth going to seek help when you have concerns even if it proves your child is NT/no problems at least you have done your part as a parent and expressed your concerns.
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I do agree Kez,I believe the boy Nicky(I think) is more aspergers and I don't actually recall his mum stating where he is on the spectrum.
I was slightly annoyed with the way they deal with Joey's frustration,with restraining him,I think he is desparate to communicate and it appears his meltdowns could be avoided if more was done to use other methods for him to communicate. I saw when at the school he kicked off after the break and it seemed that he was not given a warning,just shown the alarm clock and told "break over", maybe it was edited but did seem ubrupt in my opinion and I believe that could have been the trigger. I was happy to see at the end that the mum opted to keep him in his room to calm down rather than restraining looked much less stressful for both of them.
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Sorry if I spelt it wrong. Autism documentry on BBC2 at 9pm tonight,I think its a two part. I like his documentries so just recommending it.
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I have to say I agree with the way you handle things. You can't not tell him off for kicking the door (for example), if your eldest was doing that would you not tell him off? It is more about the fact that he should change his behaviour not you changing yours,and I think your eldest may have a point in what he is saying. I often go through the same with Sam,when he is told off and does'nt like it he often starts shouting, banging doors, and throwing things around. I know how it is,but if I don't tell him off then it does not send a clear message to him or his brothers. I would say if possible could you avoided restraining him,rather have him cool off in his room. Thats what I do with Sam,it means if he breaks things its bound to be his things in his room and he knows I won't replace it so he won't do it. Worst was last year when he threw a remote onto a new flat screen telly and the screen smashed. I did not replace it for 3 weeks,so everyone suffered and when I did I got a 19 inch which was a massive shock for them having had a 40inch for a good 5mths or so.
It does seem the meds are not working and another form of intervention is definatley needed,if you able to see camhs directly do so if not keep on at your GP to get an appt. I hope its resolved and that he will continue to work on his home education.
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I agree with Mel. On the occassions when Sam was excluded for similar behaviour I would remove things he likes,he still had his comfort things(teddies) but no telly and no computer. It was effective. I would do this for two days,this was the length of his exclusion. He would also have work to do and write a letter of apology. I would suggest the same for your son as it is a form of reflection to.
I would really really urge you to get what happened in writting,especially if he is now excluded (?) I found this helped so much with Sam's statementing. It is not nice to have to deal with but does prove he is not in the right environment.
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Great news Chris and Jeanne. It is such a relief when they are settled and begin to be happy. It is knock on effect as when they happy at school they generally happy at home(not always but usually.) I know the feeling Sam is a different boy to what he was this time 2009/2010. He has shown just how clever he is academically and has proven to be quite popular. Like your son Chris he has achieved 100% attendence and he is always eager to get to school.
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Everyday is good with Sam. Yes its a challenge everyday,he can be ina rage one minute but so sweet the next and he is so very unique and funny we all love him so much. He is a very good older brother to his younger siblings especially with his new sister. Tonight he ran upstairs to get a muslin to wipe her after she was sick and he constantly fusses over her,she is very lucky indeed.
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Hi
I have the same problem but the other way around in that my eldest,Josh(11), is NT. He has always been jealous of Sam(8 ASD) since Sam was born. When we arrived from the hospital Josh threw stones at him and would constantly pinch Sam's cheeks. Nowdays he just winds him up constantly making Sam cry and throw tantrums. Its so hard.
I did not even know how bad it was until last year when Sam's school told me that Sam feels Josh hates him and they feel it may contribute to his behaviour. They (behaviour support teacher at his ASD unit) suggested a few things. One was that they spend at leat one evening a week together doing something like drawing,during this time they have to give each other praise and compliments,nothing negative. The other thing is to work towards something,so everytime they say something good or help each other out they get to put a piece of pasta/coin in a jar,once the jar is full they get to go somewhere they both would like such as themepark or cinema. It needs to be instilled that is not to be competitive and that they should be working together to get the goal.
It does work some of the time,but I do find that Josh's age is the problem as he is distancing himself from most family in favour of spending time with friends and his overall behaviour is declining. I am hoping,like you,that things improve. What I can say is I have two older brothers who would half kill each other when they were younger,and although they are not exceptionally close they would always be there for each other and help one another out,thats whats important.
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Thank you so much everyone,such great advice
I am quite lucky that Sam has always had friends,despite being autistic.Its even better now that he has three good friends that all have ASD.So I agree it is worth making the most of it, things could easily change when he gets to high school.
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Hi all
Just wanted some views/opinions on sleepovers really,like when did your child first go to a sleep over and how long had you known the parents etc.
Sam has a good friend,who also has ASD,he has been to play a few times and I know the mum and nanny relatively well. Sam will be 9 yrs old in august I am not sure if its too young.
My eldest son Josh,11 yrs old, only went for his first sleepover in about January but he is quite mature and had a mobile phone with him.
Sam did go on a school trip 2 mths ago where he slept there for two nights so I know he could cope.... just unsure really.
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Wow I don't think thats taking on autistic traits,I think thats becoming a prisoner and being controlled by your son,sorry just an observation.
I lived with a very controlling man for 10 years of my life and everything you discribe is how it was for me. I was completely cut off from my family for three years. I did not have any confidence left and so never socialised. It was a miserable excistence. I am not one to go out partying or heavy socialising but I do like to have the choice to do so and now that I have re-built the relationship with my family I see my brother once a week for coffee and his family come once a month for a get together. I also try and see my father once a week,though he is often too ill/tired.
I think what has happened is that you have become so used to that way of life,the only way to get back your life is to start going out. I know it will be hard at first but you just have to push yourself to do it. Trust me you will regret it if you don't.
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I like that. My mum always says "children are on loan to us" its so true.
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Like Chris I used to work nights,for about 6 years and for 2 of those I worked 7 nightsp/w,I would then look after my boys. Back then I got about 4 hrs sleep in 24 hrs but it was very broken sleep,2 hrs at work and then the other 2-3 hrs at home which was not that great with two kids under 5 running about. I somehow got through it but even now I struggle at night to sleep,I do think some people are "designed" to have very little sleep and prehaps nightshift is the best option for them.
I knew an elderly lady, from a home I worked at, that would eat her dinner at 5am and breakfast at 7pm. I believe she only slept or about 4-5 hrs in a 24 hr period which is not alot for someone over 70. She would also sleep sitting in her chair.
Everyone is different and as long as your health is not affected then its fine. If you wanted to get back into a normal pattern you may need to miss a day of sleep altogether and you could just have naps the next day say no more than 2 hrs straight. Then when you do sleep at night have a winding down period where you switch everything off maybe just relaxing music until you drift off,but maybe delay sleep until 11pm but not later than midnight,otherwise you just wake later in the day and it starts again. Also make sure the temp in your room is ok, that you have had enough to eat and drink and that you have been to the loo,all these things can keep you awake. Try and finish tasks during the day so that nothing is playing on your mind. If you worrying about something write it down and put in a drawer so you can come back to it but not dwell on it.
Most importantly keep busy and active during the day so that you are worn out by bedtime. Good luck.
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I have had SS involvement recently but not ASD connected,so can't comment specifically. I don't have problems with SS and have a few friends who are social workers,so got nothing against them.
What I would say is it is about working together just the same as any other agency,like schools. If you have a psoitive approach and are willing to take on suggestions and make small changes then you will have a positive/good experience. If they can see you want to help your child,not just passing the buck,by making the changes they will be more inclined to help. Having confidence when approaching SS, knowing what you entitled to also helps. Keeping calm and not being negative helps to.
Thats just my thoughts but as I say I have not been in a position where I have needed their help. Just had them involved once in 2008 and once recently because of my ex(the kids dad.) Also involved when getting my father accomadation.
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I get what you saying but it seems to always be the same individuals agreeing with one aspect and just wondered why this is. When I first joined it seemed more balanced in a sense,so when a discussion was opened you would get quite a good balance of negative and positive comments. There is no right or wrong answer just opinions but now I feel my opinion does'nt count. As I say it could just be me.
I still continue to post though but its just not the same. I post more now as I am on leave,but I am guessing I will "vanish" when I return to uni/work,prehaps only to return when I do need advice.
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Once again I agree Kathryn. I have not been on here as long as Kathryn but I do feel I come here less and less. My own view is not so much of the "great divide" but more about the fact there seems to be a "sheep" mentality(sorry to say) with many people agreeing with certain posts and viewpoints. In a sense only agreeing with what they want to hear and not taking on board anything else.
I guess I am lucky that at present I am not having any "problems" so don't need much advice and thats why I feel I should be able to come here and give advice. I surely must be doing something right as I have four boys(and now a girl as well) two of whom have ASD and things are going well. I feel I have some experince,maybe minimal to some but its something. I just can't seem to get my view across though people seem to take everything far too personally and don't seem willing to accept/try new or different things.
Just my opinion.
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I personally don't see anything wrong with home education providing the child is actually learning something.I do not see how parents who do not have an adequate education themselves could teach their children at the same level as school teachers who are qualified. Moreover I feel that some parents are not strict enough to enforce "school time" and play time when the child is in the home.
It is all well and good saying if a child is unhappy then home ed is best option but in the real world parents have other committments to and its not always a viable option. So its worth exploring all options and it is not easy to get the best for the child,takes a lot of hard work from the parents but it can be achieved.
Going back to the OP I would say it can only be a positive that your daughter wants to be in school and maybe the issues can be resolved but like Sally has said its going to take alot of hard work on your part,phoning various people and pushing for what you want for her. If you both want her to be in school it will happen.
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My opinion is quite different, I am guessing. I believe both myself and my ex(father of my boys') have many traits and thats how we have two boys with ASD. I think it is the combination of the traits and not that we ourselves have ASD.
I have two brothers one had ADHD dx at 8yrs old but seems to have "grown out of it" or just mis-dx'd. My other brother has a dx of bipolar disorder. My mum is very eccentric,intelligent but acts silly very clumsy and my father is a loner(for want of a better word.) My parents divorced 17 years ago yet my dad is still on his own and has no friends. The friends he had in the past were husbands of my mums friends. So there are many indications of ASD but I cannot say any of my family would meet the criteria for a dx.
I have had many problems socially in the past,I also had terrible eating habits,needed OT for co-ordination problems,had extra lessons for mathematics and writing for most of my childhood. My ex is very controlling/possesive, does not see anyones point of view as he is "always right" and is a bit OCD at times.
Again neither of us would meet the criteria.
I can see strong traits in my eldest son (Josh)and my youngest(Elijah) to,but I do not feel they have ASD. I think the problems Sam and Dan have are very complex and more obvious I guess and that is why they have a ASD dx.
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With Sam he seemed to be very rigid with feeding times and how he would sleep(in the crook of my arm) from about 2 weeks old. He was underweight so needed to have breast and formula feeds,he liked his formula at room temp-cold, not warm,which was quite odd. Sam did get a virus when he was about 3months old and was in hospital for almost a week,however I don't believe this was the cause. He was very clingy and would scream if anyone (other than myself) would try pick him up or comfort him. I used to carry him around constantly when doing the housework or cooking and sat him in a bouncy chair when going to the loo or to bath,he just had to see or hear me all the time! It was a huge problem as I had to return to work when he was 8weeks old. I think the first time it clicked that something was not right is when my brother said something,Sam was about 2 years old. My brother noticed that whenever someone would talk to me Sam would get agitated and start interrupting or throwing tantrums,when I stopped talking he would be fine,he just wanted all focus on him. He also said how he could say many many words,some very long/complex but yet could not form a proper meaningful sentence. I never knew it was autism,suspected it may be ADHD as my brother had it. Eventually took him to the GP when things were deteriorating in school and the headteacher pushed me to get him seen. The GP said Aspergers straight away and he got his dx 4months later age 6.
Dan was also very clingy but with his father. He would not want me when he was ill only his dad. He also would sit on his dad's lap to eat breakfast and dinner,He would get up at 7am to eat breakfast with his dad and wait till 8-9pm for his dad to get in so he could eat dinner. In between this he ate nothing,just had drink. He was non-verbal but could communicate in his own way. He would just gaze the day away no matter how much I tried to play with him,he would respond slightly to his two brothers especially Sam,but when he "played" it was like he was in his own bubble.I left the boys' dad in 2008 and Dan was just 2years old,the problems just got worse,especially as he was close to his dad. He would scream almost 24/7 just never seemed happy. He would ask for cereal for breakfast I would give it to him then he would throw it on the floor and ask for toast,I would make toast and he would do the same again. It was a nightmare. He would hardly sleep at all which really took its toll on everyone. I first took him to a dietician when he was nearly 4 years old because he hardly ate anything,by this time Sam had a dx,the said it was behavioural and referred me to the same place that dx'd Sam. He got his dx age 4.5. With him I knew it was autism having done more research after Sam's dx and I think if not for Sam's dx I may have had a later dx for Dan. In a way Dan's behaviour was much more difficult to cope with,firstly the lack of communication and the lack of sleep made it very stressful. Both my eldest Josh and Sam really recented Dan because he got more attention,even when Elijah was born. Thankfully things are improving now.
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OOPS! Hehe that is funny.
She has been fine up until two days ago...she may have croup. Taking her to GP tomorrow.
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I agree with everything Kathryn has said. I would not watch a programme about dating so why would I watch it because it has people with disabilities? The title is really horrid!!
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Oh dear
Poor little one hope she gets well soon.
Dry hands and anxiety
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Hi
I am guessing he licks his hands to try and moistirise them(?) My son is 8 and he does the same with his lips,he does bite his lips alot in times of stress/anxiety and he gets big blisters because of it. I give him vaseline to take into school and he has two at home as well. It does ease it a little but I find the anxiety has to go in order for his lips to heal completely so takes time.
I agree with everyone else it is worth seeing the GP. It could be down to anxiety,like OCD behaviour but also our body reacts to stress in various ways,some lose hair,feel physically ill,get many colds or as in your grandsons case gets dry skin. Or pehaps it is hormonal again hormones can cause similar problems and the heightened senses he has may also be to do with his hormones. Or it could be both anxiety and hormonal. Either way its a good idea to see if the GP can prescribe something more effective for his hands but ultimatley it will be about getting to know the cause of the anxiety and addressing that issue.