Lyndalou
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Posts posted by Lyndalou
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Sounds like the massage is out....
. What about calming smells or homeopathy? I'm not a devotee of homeopathy but some people swear by it....I do however believe in the calming properties of lavender. Even things like a blocked nose can stop my kids sleeping so I often use Olbas etc in a plate of water by the radiator or drops on their bedding... -
You have (I think) answered your own question and it does sound like change is a huge issue for Jack. I know you will be doing everything you can think of and it must be exhausting, especially if you are considering the needs of 3 other children at the same time. Sometimes you just have a 'lightbulb' moment and suddenly everything makes sense but you have to be a detective, especially if your child can't tell you what their problems are. All the photographs have to be turned face down at my parent's house because of the 'eye' fear but until my husband realised this was the problem, my son would only sit in the corridor during our visits, 3 visits in a row because the fear came out of nowhere - every visit has been perfectly 'normal' until last summer. So, we sat there discussing whether it was the amount of plants in the room, the curtains, the volume of the TV or shadows on the ceiling which was causing the problem. It was very frustrating and then my husband had the 'lightbulb' moment and now things are fine.
Can you see the Paediatritian again soon? They will have come across this before and may be able to advise on calming techniques. Like I say, I'm not an expert at all but it really doesn't sound like a true sleep 'disorder' to me.
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I've just had a thought. Have you considered things like massage or stroking? I know this sounds weird but sometimes I massage my little boy's shoulders and back and he visibly relaxes. massage in general can make you drowsy. Would he tolerate this? Last night, he asked me to get into bed with him to get a big hug before he went to sleep. I lay on the bed beside him and just stroked him gently with a finger from the bridge of his nose to his hairline. I stopped and he took my finger and made me start doing it again so I did it for a while more until he was almost asleep.
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I would suggest that if Jack went to sleep 4 nights in a row at his nanny's house then it is clear that it is possible for him to go to sleep by a particular time. If he was ok in your old house too then I would suggest that this isn't a sleep disorder. I know you've asked before about this problem and there were suggestions about how to have his bedroom set out, even colour schemes.
My son doesn't have a sleep disorder but he does have many fears. We now leave his bedroom door quite far open and the hall light on all night which makes him feel safe. When I was a child, I 'saw' a 'shadow tree' which waved back and forward in the doorway to the bedroom and this blocked my exit. I could lie for a long time watching this 'tree'. I was also petrified of the dark - I had an extremely vivid imagination as does my son. Children with ASD are mistakenly thought not to have active imaginations but just because they don't have good 'social imagination' does not automatically mean that they don't have all sorts of fantasies. It could even be that he is scared to go to sleep if he is having vivid dreams.
i don't know your son but it's worth thinking about the less obvious things. My son will not go into the living room in the morning unless we turn the spotlight on the standard lamp around as it looks like an 'eye' and this is a huge irrational fear for him at the moment. There could be something in his room that is scaring him and making him seek solace with you or his dad.
Hugs and hope it improves and you get him to bed soon.
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Is it possible that it's to do with the activity in the house? I see that your little one is still awake too. If he's been away for 4 nights it could be something to do with the fact that he missed you and was thrown by being away from you? He could be looking for attention because of this, especially since he sees that the baby is still up? Is the baby crying? Could this be bothering him? Are there lights on? Is there music or TV on? It might not be much fun for you but it could be worth trying making the house as quiet and as dim as you can. Not sure how practical this is...
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Hi Emma
I see you are in Glasgow...a fellow Scot? Would it be helpful if you could meet people in a similar situation to you? I am aware that there is a drop in place in Edinburgh for people with Aspergers but I'm not sure about Glasgow unfortunately...I could ask around if you like. I know someone who might know.
If you are 100% sure that you have AS, I am assuming you've probably already done a fair bit of reading on the subject but it can be tricky to find practical advice aimed at adults. I've found Jessica Kingsley Publishers to be a very helpful publisher of books on AS and they publish all sorts of books from Employment to Relationships (romatic and friendships) and Mental Health issues.
Lynda
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That sounds great Jeanne. It would be lovely if Glen can be much closer to you so I really hope it all works out that way. Keep us posted xx
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Just pointing out that this thread is from 2005 so no longer applies to OP.
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Hi Ohalrightthen
Have you been in touch with Gail McKeitch, NAS Ellon Branch Officer? She might be a good first port of call to find out what is available round about where you are. Her telephone number is 07880 780686 and email is ellon@nas.org.uk.
There is also a very good comprehensive services directory which has been produced and I'll give you the name of it when I remember. To my knowledge it has been compiled by parents so it has this slant....
Have you also been in touch with the Social Work Child Disability Team in your area? I'm not sure if it's the same one as mine. They should be able to advise you on activities suitable for your son and practical support for your family. There is a special needs 'club' which runs alternate Saturdays for children 5-12 yrs in Huntly for instance.
Feel free to PM me too
Lynda
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Interesting stuff Sa Skimrande - thank you
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I think it's normal and common to crash when you realise you have AS and you shouldn't feel bad about it. When I first found out I felt that my life had been an illusion because I didn't realise that I'm neurologically different to other people, and I needed to discover who I really am. I just thought any problems I was having were down to my inadequacies and failures as a person.
My sentiments exactly. Perhaps some people can say 'Hey, I've just found out I have Aspergers and that's ok, I'm fine with it because it explains everything' and then just carry on with their lives as they did before. I know someone in real life who this is true for. They're not happy about it and they're not sad about it - it just is. Both her children have now received a diagnosis and she (seems to ) take(s) it in her stride.
It's not been like that for me and probably not for a lot of people. My husband, at the height of my anger and confusion, kept saying that he didn't understand why I was not just relieved to find the answer to the problems I've had in life. However, I think that part of it was that it came as such a shock and the answer I got was not the one I expected. For so long I was told that it was 'all in my head' and it was my only perception of reality and not what was actual reality (when I believed I had upset people and was obsessing about it or felt that I didn't fit in for example). I am chatty and friendly. I'll talk to anyone and everyone (when I'm in the mood to) and I enjoy finding out about people. It did strike me as odd that in a one-to-one meeting I could get headaches with prolonged eye contact but I put it down to my poor eyesight and concentration... Even now, my communication prohibits me from being believed by many people and that too is extremely tough.
The summer after my realisation even watching the children playing in the street upset me. The girls were all 'girlie' and played together doing 'girl' things with their pretty hair and pretty clothes and I saw visions of myself looking (as my mum put it) 'like I'd been dragged through a hedge backwards' when I was the same age with my hair hanging in 'rats tails' with bashed up knees and cardis buttoned up wrongly. It's not like I ever wanted to be like them but the absolute difference between the two pictures made me realise how different I will have looked at times to my peers. I suddenly understood that autism was the reason I loved being by myself and why on the occasions I went to visit classmates homes that I was struck dumb because everything was so 'different' to my house. I suddenly knew that it was the reason I didn't know how I was 'meant' to play in a Wendy House and why I dulled the pain of losing my real best friend who ostracised me from the rest of my class by creating an imaginary friend, although even he got in the way of me doing my own thing!
It takes time and a lot of energy to work it all through. Having a child (or two) with ASD can force you to live your life in parallel to them - you see yourself at the same age and although it helps you to make sense of your child's problems (which is a huge bonus), you have to at the same time relive your own life and when a lot of the life you've had has been painful then you have to relive that pain too.
I accept my child needs time to himself because I remember all the time I had to myself. I fight to ensure that my child's teachers treats my child with respect and understand his difficulties because although some of my teachers may have 'got' me and helped me achieve my potential, other teachers bullied and damaged me. I feel the pain my child feels and see the confusion on his face when peers ignore him or even sneer at him because all of a sudden I know that there have often been times that I have been treated that way too.
Lynda
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It's on the thaw up here but by all accounts torrential rain is on the way. It snowed all yesterday, so much so that my son went away on his school bus at 9 and by 11.10 he was back in the house because they decided to close early...bit of a waste of time going in really!
Job for today...clearing the trampoline of snow so the munchkins can have a bounce
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Hi Kitty
Have you phoned the National Autistic Society Helpline to ask for some advice? If you go on their website you can find this number and also lots of information about what Aspergers and Autism is and the various 'symptoms'. They also have information or suggestions about how to go about asking for a diagnosis but I would suggest you actually speak to someone for advice too. If your mum is supporting you in this it will also be very helpful as normally parental input is required as part of the diagnostic process.
Lynda
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Hi Caroline
If you are worried then it won't hurt to ask for some advice. Remember that girls can be a bit different to boys in how they 'present'; eg. it is thought that girls can appear more social at times than boys and their interests may not be as glaringly 'unusual' as those of boys with ASD.
However, some of what you describe is similar to my son. For some time he would refuse to eat broken biscuits and how food 'looks' is still quite a big issue. Also, my son would get upset if he was splashed with water as he descibed it as 'dirty' but in short it was just not meant to be there and often when he was splashed he was taken by surprise and this in itself was upsetting.
If she is getting very upset at the prospect of going visiting, can she explain why this is? It does sound quite unusual that she requests they don't speak to her.
Maybe bring it up with the Health Visitor?
Lynda
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Being a "control freak" and needing to know or plan everything in advance is a really common thread for those with ASD. I believe in stems from the need for systems and a want for everything to follow a nice, obvious path.
It can become problematic in social situations when disagreeing with something and needing to present why you feel something is or should be a certain way. Also in work, coping with changes to a system or seeing faults and flaws in potential changes. Relationships can be hard to, especially when partners get frustrated at needs to do certain things a certain way and letting them know when you perceive them doing something "the wrong way" - or just not your way.
I've found that being relaxed about these things, taking mental notes and taking the times to try and understand what the other person, or system, is trying to achieve and and why is a good first step. Instead of automatically leading out with a criticism or how you think things should go, try taking a step back first. When communicating your disagreement or viewpoint it helps to bring up one point at a time, and use phrases such as "i see where you are coming from", "i understand", and then leading on with " it might be a an idea" or "have you thought of" instead of forcing you point across.
When trying to get someone to do something they might instinctively react badly because of a perceived criticism of them or their work. Getting a person to understand something, and even framing it as their thought in the first place can make people more receptive to the idea, and this is a key concept in teamwork and better communication
Well put. Very difficult to put into practice but I've found that taking a step back, especially in 'fraught' circumstances or when you really want to say your piece but you just know it's not a good idea is the best way to play it (for me)!
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....and a 1kg bar of Galaxy...stuff that superskinny model-type on the Galaxy advert nibbling on one little bit - it goes in 3 pieces at a time!
My son's music teacher emailing me today and telling me I have two 'adorable children'...little lump in throat
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Some of mine overlap with yours Matzo...
Chocolate (I have recently rediscovered the pure joy of eating straight from a jar of Nutella)
Going to the movies
Watching my daughter crinkle her nose and look indignant
Walking through a quiet wood in summertime
Good food (but not cooking it)
Reading a good book and especially one I didn't expect to like
Cranking up dance music I'm far too old to appreciate in the car
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I'll come back to this because have to get ready for school...
<'> All I can say is that I completely understand. There have been periods over the last 2 years that I have felt similarly to you and for me I've felt that I am at times stuck in a no-man's land. Grief is a normal reaction and it's something you may not be able to fully describe but I feel it in your post and I do admire you for putting how you are feeling 'out there'. There will come a time that you will reach more of a level of acceptance and then contentment....I'm not there yet myself but I bounce about between all the emotional states and I'm sitting much more at acceptance and contentment than at grief these days and it's all part of the process, I think.You are capable, smart and you've achieved a lot in your life despite your difficulties. Be proud of yourself and don't give up.
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Alex
I would say that I've learned a lot simply by making mistakes. Sometimes it is a good thing to experience what can go 'wrong' in order to make it 'right'.
I can look back in my life and I see all the connections. I see all the problems I've had, all the successes and failures and all the good and poor decisions I have made and connect them all together and now everything makes a lot more sense than it used to. I've maybe not gone in a straight line but I've made some progress along my own personal life journey.
All the way through my 20's in particular I felt like I was going nowhere and worse still I often I felt like I was running just to stand still. It was completely exhausting. I've variously called those years my 'wilderness years' and my 'steep learning curve'. So, I have a bit of an idea of what you are describing...
At the start of your journey you can't predict what it is going to be like. You may know where you want to go but you might take a detour and go the wrong direction and then have to get back on course again, you might hit road bumps and incur some damage and you might have to sit for a while waiting as something blocks your way forward. Sorry about the travel cliche but I think it is like this!
Good Luck with your journey
Lynda
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It was suggested to me (I can't remember by who) that it would be helpful for me to see a social worker to find out what services and monetary help were available to my son on his own and to us as a family. Towards the end of last year I was interviewed by a social worker for the Children's Disability Team who was very approachable and knowledgeable about services in the area. Her role is quite different to social workers who are part of a Child Protection team, ie. her central focus is not on protecting the child or monitoring difficulties within a family but is to provide information and support. For us, it was felt that it wasn't necessary to have a permanent social worker as things are going well and my son already accesses a lot of activities which aids his development and I chose not to access support workers. However, in order for us to get access to certain services we need a social work referral and the referral cannot be made any other way. Therefore, we are due to see the social worker again to fill in the relevant paperwork for a referral to a social activities group which runs locally.
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It may be a good thing that they are asking further questions to help aid them in their decision-making although I would hope that these questions would be relevant to making a decision as to whether or not your son requires an assessment for ASD. The question about your son's eyesight might be relevant with regards to his general development and may be something that is considered if he has noticeable lack of eye contact. However, eye contact is only one of a number of indicators of ASD and in fact some children can have too much eye contact not too little; it's anything that falls outwith what is considered to be 'normal' development like problems with speech development and other communication issues, delays with development of personal care skills, eating problems etc
The fact that you are keeping a diary of 'unusual' behaviours is good if you want to provide examples to professionals of your concerns.
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What kind of support EXACTLY are you looking to access Smiley? There are types of support/therapy that can be accessed through mental health services which can provide help in working on general coping skills and issues surrounding anxiety and depression. I have been referred for these myself and have found them helpful but it is fair to say that not everyone would feel that way or that they are appropriate for everyone either. A lot of the time they are not ASD specific but there can be many helpful strategies used in traditional talking therapies that can help a person deal with and face up to their ongoing issues.
Can you focus on the positive like your upcoming trip which sounds like something very good to focus on?
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Sounds great! I'm sure you'll have a lovely time
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Hi Kath
I think the process happens differently in different areas so there is no set 'timeframe' with regards to diagnosis unfortunately. I am imagining that your son's referral has gone in front of a panel for them (whoever they are) to discuss whether or not he needs to be formally assessed and this is a very good starting point!
If you feel in the dark about what is going on then you have every right to ask for clarification about who is involved currently, who will be involved in any assessment, what the assessment is likely to involve and when it is likely to take place.
If you have contact with the woman who is in charge of school age referrals - what is her role and will she play an active part in the assessment process? - it is probably sensible to approach her again with these questions. Your first question may be about what the panel were making a decision about, ie, have the panel made a decision and is this with the purpose of organising an assessment. When I got this information with regards to my own son's assessment (if I remember correctly), I then had to confirm attendance at the assessment and then I was sent an assessment pack which provided information about who would be assessing my son and when during the course of the process. My son was assessed at a centre which specialised in conducting developmental assessments which sounds similar to your own situation.
The 'not knowing' is very hard...I remember it well. Try to find out exactly what is going on and it'll become a bit easier.
Lynda
GRRRRR!!!
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I would certainly talk this through with the Paediatritian. I think that you would have to speak to someone if you were asking about the possibility of prescribing melatonin so your first stop might be your GP if you can't have a phone consultation.
Hope the car trip will have sent Jack to sleep - my two are out like a light in the car!!
In my personal opinion, I wouldn't self-prescribe anything - melatonin is tailored to your child's age and weight. it could make things worse rather than better.