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Lyndalou

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Posts posted by Lyndalou

  2. Posted · Report reply

    First of all, whether or not your concerns amount to 'anything' in the longterm, they are valid concerns that you have every right to bring up with your HV. It may be that your 3 year old is just a bit delayed and will catch up with his speech development or it could be that he does have some kind of speech disorder or delay associated with ASD. Either way, if you can get a Speech Therapist involved as soon as is possible then it will aid his development.

     

    I totally understand that you must be worried, especially as you are having such a hard time coping with Jack but it's maybe best to try to not get too ahead of yourself. Ask for advice - since Jack is currently undergoing assessment for ASD it is a perfectly understandable and appropriate thing to do if you are worried about your wee one's development - and if it is flagged up then the professionals are in the loop and they can advise if it's likely that he needs to be monitored. The fact that you are seeing possible similarities with Jack in itself could mean something but you have to also bear in mind that everyone with ASD has different difficulties to different extents.

     

    >:D<<'> Lynda

  4. Posted · Report reply

    Other thoughts...

     

    There's a group which meets that is for children more of your son's age group on a weeknight in our nearest city. They meet in a Secondary school so have access to a large sports hall and they have a sports coach who comes along and teaches a bit of basketball and other ball games. I think they might get local authority funding for rental costs and to pay the sports coach.

     

    I looked into my son possibly going to a gymnastics class. He is only 5 and he has a lot of problems following instruction so it's not for him meantime but the gymnastics coach told me he had some boys with ASD who attended his school who were a bit older. I have also considered trampolining.

     

    I also looked into the possibility of group music therapy/music lessons. There was no-one locally who provided music therapy (that I could find) but I was put in touch with a music teacher with a number of years of experience who currently comes in independently to teach a couple of pupils at my son's school (again older kids). My son now does individual lessons with her and she is great with him and very patient. She really mixes it up with him him to try to keep his interest and has done things like move the reading light off the piano which was distracting and upsetting him and understands when he has to 'plink' the top key after everything he does! Perhaps there is a similar person youu could access to do music with the kids?

  5. Posted · Edited by Lyndalou · Report reply

    Hi Heather

     

    Just have a few thoughts... Don't know much about what EBD schools provide but I'm assuming that there are rooms for chilling out in...music rooms or sensory rooms/snoezelens, outside and indoor play areas etc? I'm still not entirely sure if you are thinking about a lunch club throughout the school day or on weekends and the reason I'm making a differentiation is that I know that at my son's school, a lot of emphasis is placed on mealtimes and the social aspect as well as encouraging the kids to try different foods if there are sensory issues so I don't know if you would be able to have a club during this time at your son's school?

     

    There is a local school near me where a weekend club meets for kids with Special Needs overseen by the Social Work department. They have the use of certain rooms including a sensory room used by the school special unit and have access to outdoor areas on nicer days. My son has just been referred to this. I wonder if you could negotiate something similar with the school or get the Social Work department in your area involved? There would possibly be the question of liability so I'd imagine there would have to be some kind of contract for use of equipment etc if you were meeting outside school hours....not quite sure how this type of thing works, sorry!

     

    I have also quite recently been involved in an activities group locally. We have used various venues for various activities so we have conformed to the rules laid down by each individual venue. Our central activity was a free gym play activity (exclusive) which was held within a large room with padded cushions on the floor and various gym equipment including balance beams, assymetric bars, trampolines and springboards. It meant that the children could spread out and do their own thing or come together to play as they wanted. Bowling was also something we have done which the kids enjoyed although the noise was an issue. We had to ask for the music to be turned off for instance - my son really struggled with this. Again, it's an activity which they can do side by side as opposed to having to play 'together' as such. I negotiated craft sessions with a local ceramics workshop and discussed the needs of the kids and what we wanted to achieve at length. 'Closed' sessions were decided on so there was no disruption and the kids could be given the chance to focus for as long as they were able with instruction given by the owner. She had equipment that would be suitable for children with dyspraxic issues etc. Swimming is also an activity that was decided upon (again a closed session). My son's school has a pool attached so perhaps your son's does too? However, I would think you'd need qualified lifeguards on duty so possibly it wouldn't be a practical suggestion.

     

    Various people can be approached for money. If you were needing funding to do trips out in a minibus to a park or the seaside you might be able to ask Rotary clubs or Round tables for money. We got some money donated to us from a local Playgroup even. There are also various charitable funds which you can apply to for specific reasons so you might want to go down this route too?

     

    Lynda :)

  6. Posted · Report reply

    Hi Gareth

     

    Welcome to the forum and for your introduction. It's nice to know a bit about you and hope you enjoy your time here. I've edited your post (slightly) as it's best not to give out too much personal information as this forum is open to non-members to view as well as members.

     

    Best Wishes

     

    Lynda :)

  7. Posted · Edited by Lyndalou · Report reply

    Hi Mike

     

    We probably don't see it all but there are certain things like what you are talking about - members posting too much personal information and various issues that may be upsetting to other members - which when seen or when our attention is brought to it, can be edited or moved by the moderating team. Members are contacted to let them know the reasons why certain decisions are made.

     

    The idea of an over 18's area (private) has been discussed quite a lot recently but as it stands there are no plans for this to be put into effect.

     

    I'm not sure if a screened area for members only has ever been discussed but can let the other moderators / hosts know of your suggestion.

     

    Please flag up anything you think is of concern Mike in future (and anyone else!) and keep the comments coming.

     

    Lynda :)

  8. Posted · Report reply

    Hi Heather and welcome to the forum.

     

    I hope you enjoy coming onto the site and that it is helpful for you. You must have had a real fight on your hands all those years trying to get your son diagnosed. It must be a relief to finally 'get there'!

     

    Are you thinking about a lunch club at school or outside of school? Do you know the other parents and what do they think about your plans? I'm sure that there are lots of ideas that could come out of discussion with them. There will also be funds you could access if you had overheads you needed to cover, I'm sure. I'll have a think and get back to you. my children are needing their bath!

     

    Lynda

  9. Posted · Report reply

    Hi Noskcaj

     

    I can't remember if you've seen anyone for continence advice or not? I know this came up before and it's really good to hear that there are times that Jack is dry! However, if the school are taking him to the toilet as frequently as they are then I would suggest that they are 'catching' him and it might not be necessarily that he is recognising he needs the toilet. Is there any way he communicates to let you know that he might be needing a wee? For instance, my son jiggles about, can't seems to concentrate and makes 'funny' noises. I can ask him if he is needing to go to the toilet and often he says 'No' so I'm not convinced that he always knows when he needs to go although at other times he asks to go, often when he is desperate. So, a lot of the time even if he says 'No' or is a bit unhappy about it, I tell him I'm taking him anyway and he can be pretty relieved when he pees!

     

    It felt like a backward step to put my son back in nappies to poo in but we decided to do this some time ago but only again if there are 'signs' he might need to poo. This is because he refuses to poo in the toilet and after 2 months of hell with he and I literally at screaming point because I was determined to get him fully trained, it was a case of choosing our battles and trying to get things calm again. Normally, he goes in nappies after dinner because this is the 'normal' time he goes but it can be straight after school. We don't call them nappies though, we call them 'poo pants' so he can distinguish them from his 'normal' pants and they are only for pooing in and for overnight in case of accidents.

     

    Maybe there are times when you could use the compromise of nappies, if you are out and about and it won't confuse Jack. It could be he is wearing 'out and about' pants or something. If you are trying to juggle the other kids and deal with other behaviours Jack has, this might just take the pressure off. Other times like in the house try to take him 10-15 minutes after he's had a drink for example or when it 'looks' like he might need to go. Remember that he might not really know himself! I try to keep a close eye on what my son eats and drinks and at what times to try to keep some regularity and to try to predict when things might happen. I know this might be tricky for you but it could be worth a shot!

     

    Lynda :)

  10. Posted · Report reply

    You sound a bit calmer and more in control right now? I'm glad you had a good chat with your partner and maybe that will be helpful...a bit of 'normality' - him doing his thing where he is and you doing your thing where you are! You've got a plan for tomorrow and that's great too. It's definitely something to focus on and keep any negative thoughts at bay. Well done for finding ways to get through a hard time :) .

  11. Posted · Edited by Lyndalou · Report reply

    Hi Nicolax

     

    Welcome to the forum and hope you can find some answers and support here. In order to obtain a diagnosis it will have to be established that your daughter has problems across what is called the 'triad of impairments' which includes problems with Social Imagination, Social Communication and Social Interaction. The best place to start for quite a comprehensive overview of what ASD is is probably to go on the National Autistic Society website.

     

    Obsessiveness and repetitive behaviour can definitely form part of having an ASD as is difficulties with making friends and resultant bullying. Mental health issues (including paranoia) can be common problems that can exist alongside an ASD although they are technically not part of the condition. However, there are a lot of other issues that will have to be present too but from what you say there must be enough of those issues present for CAMHS to be considering it.

     

    The main thing about your daughter getting a diagnosis is that it should open doors to her getting more of the support that she needs. It also means that you (and she) can start to understand why she might act and react in the way she does and help you to learn ways to cope with the difficulties associated with the condition.

     

    There isn't a great deal of 'formal' literature out there about girls with ASD but more and more is starting to be written. Jessica Kingsley Publishers publish a variety of books on ASD's in general and women and girls with ASD in particular.

     

    Best Wishes

     

    Lynda :)

  12. Posted · Report reply

    Hi ebichu64

     

    Is there something that you've thought about doing for a while but you've never got around to doing? This might be the time to do it when you can emerse yourself in something that takes up your whole focus and attention. It might take your mind off being on your own during the day. You are doing all the things that I would do which is switching off the phone at times you know you won't be getting a call from your hubby and locking the doors. Maybe stick a sign on the door saying 'Please don't ring the bell' or 'No callers please' to discourage people turning up unexpectedly too?

     

    I know I can be a bit uneasy when I'm here on my own overnight. I might keep certain lights and the TV on.

     

    Hope you are managing to keep calm right now. I really hope that on Thursday the doctor gives you something to help get these attacks under control because it must be so frightening for you.

     

    I know it's not much to suggest but have you tried camomile tea - I find this quite relaxing - or milky drinks like Horlicks? I've cut right back on my caffeine intake too which has helped my anxiety levels a bit. Do you have favourite smells that calm you? For a time I slept with my husband's T-shirt (a bit sad I know!) but it had his scent on it and was reassuring.

     

    Hugs, Lynda

  15. Posted · Edited by Lyndalou · Report reply

    Hi Bains

     

    It sounds like you are making some progress but I appreciate your frustration because even a short wait seems like a long time if you are in crisis. The thing with medication is that it can work differently (or not ) for different people. Whatever is decided medication-wise will probably take this into account. Your son would probably be started off on quite a low dose and initially there could be some adverse effects or very little apparently 'happening' for around 3 weeks and then when things settle the dose would likely then be increased or it could remain the same. There is a school of thought that people who are on the spectrum are sensitive to medication just the same as they are sensitive to many other things and some people (like Temple Grandin) advocate cutting the dose in half of what would 'normally' be prescibed. I don't know how many Psychiatrists accept this line of reasoning but even so, if a lower dose is having the required effect then that is all that will be given.

     

    When I have been on medication, I have been prescribed 20mg of Citalopram and for me this worked very well. I believe that Citalopram is prescribed quite frequently for anxiety problems and it certainly did have a 'smoothing out' effect on my emotions in that my extreme mood swings abated and I felt more in control. However, I had to take the tablets as prescribed and as my memory is poor at times I frequently forgot to take them and the side-effects of this included nausea, problems with balance and headaches (again for me as they are different for everyone).

     

    Cognitive Behavioural Therapy is seen as quite a good form of therapy in order to get to the bottom of emotional difficulties but it does require the person doing it to fully commit to the process. By all accounts it is a pretty difficult therapy to undergo (I have never done it myself but have worked with people who have) as it can dredge up all sorts of emotions and feelings that a person may have suppressed and the person has to trust the therapist which could be quite difficult for them. Family therapy might be very helpful as it could be a means by which everyone can learn how to open up to each other in more positive and supportive ways.

     

    A book I would advise anyone to read would be 'Aspergers Syndrome and Anxiety: A guide to successful stress management' by Nick Dubin. I think this is an excellent book with many very helpful strategies in it for people who are in the grip of anxiety.

     

    Lynda :)

  16. Posted · Report reply

    Hi Smiley

     

    As Willow says, you need to distance yourself from your Aunt's problems if you can. Clearly, you empathise with her but she is not your responsibility to make things 'better'. In my late teens, my parent's marriage was on the verge of disintegrating due to all sorts of reasons that were totally outwith my control. However, I took it on myself to try to keep them talking and felt the pressure of ensuring they worked things out. With or without my 'help' they did work things out but I don't know how I would have reacted if they hadn't - I think it's likely that I would have blamed myself that I had not worked hard enough!

     

    Your Aunt is in the situation she is in for reasons that are nothing to do with you. She is unwell and she is not accepting help. It is not your responsibily or your 'fault' in any way that she is like this. Blame the illness and understand the reasons. Your parents are in a better position to help her as are her friends. Even the distance is an issue.

     

    Concentrate on YOU and your issues right now.

     

    Lynda :)

  19. Posted · Report reply

    Aspergers and girls is a good book as it features some of the most knowledgable people in the field including Tony Atwood and Temple Grandin. But it is more a book for you, as a parent, to read and get help on how best to help your daughter.

     

    I found Aspergirls by Rudy Simone to be quite helpful, but I am an adult (female with AS).

     

    Hope this helps

    I was going to mention the first book too Amberzak :) but having read it like you say, I think it's really more of a guide for parents on how to support and guide their daughters. I don't think it's particularly comprehensive either but it does in general get good reviews. There's 'Asperger 's in pink' too but I've never read that one. 'Aspergirls' may be worth a read but I think it's audience is more adults than children/teenagers.

     

    You have a brilliant starting point - an open and honest relationship and she knows where you are if she needs you. If you can keep the lines of communication open even if she is keeping many of her feelings more private then her transition into her teens will hopefully go more smoothly. Although I had a good relationship with my own mum to a degree at that age, in my early teens I lost a lot of my trust in her as I felt she ignored my needs and even laughed at me when I was very vulnerable. I therefore saw no point in confiding in her and kept all the difficulties I experienced to myself. I think it's crucial that you do not lose this trust because it's very harmful to 'suffer in silence' and can cause a lot of unnecessary distress. Let your daughter be herself and don't make her pigeonhole herself into being something she's not comfortable being. I think that a balance can definitely be struck where she can maintain her individuality and still form appropriate and healthy friendships. However, it's up to her if she wants to 'conform' more or not - as she gets older she might feel the need to do this.

     

    Lynda :)

  21. Posted · Report reply

    Hi Sammysnake

     

    I'm afraid I haven't read the book but it gets very good reviews on amazon. Maybe it's worth buying it and reading it first to see what you think before your daughter reads it? I don't think that whatever she needs to know and learn she will find in a book necessarily and whatever strategies she reads about in the book will have to be put into 'practice' so any book will just be a starting point. Does she have a friend who could guide her and explain certain difficult situations to her perhaps?

     

    If I had any advice from a personal point of view, I would start now explaining to her and supporting her in how to be around boys. At your daughter's age I was just 'discovering' boys and I always put a very romantic spin on my (extremely full on and obvious) crushes as I got older. It is a good idea to encourage good positive relationships with other girls, helping her to avoid those who wouldn't have her best interests at heart.

     

    Lynda :)

  22. Posted · Report reply

    Hi Ebichu64

     

    I've always fared better in the company of men and even as a little girl I loved male attention. One of my best memories is steering a fishing boat into harbour at the age of 8 after having spent a whole day fishing with a boatload of men. I caught 21 fish that day and was very proud of that fact! After two very difficult experiences with best girl friends, my next two best friendsduring my teens were boys although one went on to betray my friendship very badly and again during my 20's I was close to a few men. It has got me into bother because I've believed the 'just friends' line when it's not been true so that's maybe why I tended to befriend gay men for a while...I got all sorts of abuse from an older man who confided in me that he was having trouble in his marriage but that we were 'just friends' and then when I started seeing my husband he acted like a jilted lover and sent me a barrage of spiteful texts about me being a 'tease' and the rest!

     

    Right now I'm having all sorts of problems because I'm constantly surrounded by women. It's so tiring with all the hidden agendas, bitchiness and back-biting! As always....

     

    For some time as an older child and teenager, I entertained the idea of being a vet because I loved animals. I used to try to give dead animals the 'kiss of life' (goodness knows why I never caught anything!), pigeons, voles etc and one time I squared up to some boys who were 'blowing up' frogs at the park. Then I realised that I would never be able to do a veterinary degree as I had no clue when it came to science subjects and my grades weren't high enough. So, during a particularly bad time at school I announced to mum that I was going to leave school, join the army and become a dog handler! Ballistic isn't the word.... Sometimes, I wonder if that would have been a good road to go down.

     

    However, over the years I have only shared a house with small fluffy creatures and now none as my daughter has excema and allergies. I know I wouldn't be able to cope with the mess and hair created by a larger animal these days... So instead I have lots of animal pictures and ornaments around the place.

     

    I don't really see myself as a woman in the sense that I'm not a girly girl. I have no great interest in shopping and when I do it I do it alone. When I shop with someone else I always feel on edge and one time I got a clothes 'makeover' because one of the women I was with impressed upon me that I needed one! Now and again I make an effort to prettify myself but most of the time I can't be bothered. I have now conceded that I now must use face cream as the wrinkles are starting to appear thick and fast!

     

    Lynda :)

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