Pinky Report post Posted November 26, 2009 Hi everyone, i'm a mum of 2 boys age 2 and half and nearly 5. I hope its ok for me to join here as my son has not got a diagnosis. this is a bit of a sad plee! (lol) but i'm feelin a bit lonely re an area in my life at the moment. we have had small concerns re my eldest son for a long time (2/3 years). Iwe think he may have asd possibly a high functioning ashbergers???? only our ideas. (dont really know any terms properly) The reason i'm feeling lonely about this is because, I have some lovely friends but i am finding it hard to say anything as when we are out and about or with friends or at school, I don't think anyone would notice. I would hate for anyone to think I was imagining it or to be dismissed as we really feel there is something, as do my parents. We are fine with whtever, reallyt as we feel he is who he is, but maybe a diagnosis would help, myself, himself, family and school have an understanding of his behaviour. I could waffle on for hours about why we think this, but I would like to make contact with you before I start to scare u away with my waffling!! He does not sleep very well, so nore do I, I am very emotional smetimes, othert times I'm very strong (prob hormones and lack of sleep!) but I would love some support to help me thru this possibly up and down time. I have started the ball rolling by keeping a diary since easter this year which i was advised to do. I have spoken to the health visitor re my concerns last week, (which is the first time i have voiced my concerns to anyone otside the family)and I have arranged a meeting with school class teacher and senco for next week. When I briefly spoke with class teacher she was wonderfull, very open to listening and said that he was on the top of her list ofchildren re concerns. i really hope that theres someone who has been in similar position or has an idea of where i'm coming from. we are away for the weekend so pls dont be offended if i dont reply quickly x pinky xxx Quote Share this post Link to post Share on other sites
justine1 Report post Posted November 26, 2009 Hi everyone, i'm a mum of 2 boys age 2 and half and nearly 5. I hope its ok for me to join here as my son has not got a diagnosis. this is a bit of a sad plee! (lol) but i'm feelin a bit lonely re an area in my life at the moment. we have had small concerns re my eldest son for a long time (2/3 years). Iwe think he may have asd possibly a high functioning ashbergers???? only our ideas. (dont really know any terms properly) The reason i'm feeling lonely about this is because, I have some lovely friends but i am finding it hard to say anything as when we are out and about or with friends or at school, I don't think anyone would notice. I would hate for anyone to think I was imagining it or to be dismissed as we really feel there is something, as do my parents. We are fine with whtever, reallyt as we feel he is who he is, but maybe a diagnosis would help, myself, himself, family and school have an understanding of his behaviour. I could waffle on for hours about why we think this, but I would like to make contact with you before I start to scare u away with my waffling!! He does not sleep very well, so nore do I, I am very emotional smetimes, othert times I'm very strong (prob hormones and lack of sleep!) but I would love some support to help me thru this possibly up and down time. I have started the ball rolling by keeping a diary since easter this year which i was advised to do. I have spoken to the health visitor re my concerns last week, (which is the first time i have voiced my concerns to anyone otside the family)and I have arranged a meeting with school class teacher and senco for next week. When I briefly spoke with class teacher she was wonderfull, very open to listening and said that he was on the top of her list ofchildren re concerns. i really hope that theres someone who has been in similar position or has an idea of where i'm coming from. we are away for the weekend so pls dont be offended if i dont reply quickly x pinky xxx Hi and welcome to the forum.I am in the process of getting a diagnosis for my six yr old,he has had one assesment and the paeditrition is certain its aspergers ahe reported lack of eye contact no social interaction and communication problem (misprenounces words and doesnt understand questions at times.)He does well at school but has been excluded recently temporary due to being aggressive.At home he is fine he has three brother and they do rough about like any other boys their age,he does whine and cry alot more than others his age and he does break toys draw on walls etc.I still love him to bits.I think it is better not to tell anyone of your concerns rather wait until you have at least seen a paeditrician for assesment and see from there.I just have heard of stories where they may have thought its aspergers but its soemthing else or worse nothing!!I am not saying this will happen but best to keep quiet for now.Make sure you keep a diary of "odd"behaviour even if its something small it can be important,I thought my son was just a fussy eater but he isnt its sensory issues!I really think given you have a younger child you as a mum will know there is something my son and his younger brother have same age gap as your two and it was at the same age your are that I seeked help because I got to compare him to both his older and younger brother there was just something so very,very different.Good luck remember you will always get great help,support and advice here so pop in anytime! Quote Share this post Link to post Share on other sites
JsMum Report post Posted November 26, 2009 (edited) Hi Pinky a nice warm welcome <'> I was reading your post and nodding to much of it, and I can understand the reasons to why you would like your son assessed for HFA/ASD my own son has gone throw a really long process to gain a dx as he has he is bright and much of his behaviours were ADHD, Anxiety and sensory issues, I think not enough is known for HFA in local authorities so it is harder for children who are higher in the spectrum. Im pleased to read you are keeping a diary and that you are in communications with the school/nursery this is very positive as they are providing you and your son support. I recommend NAS who have help conferences that have a wealth of information and how you can put in place some stratagies to help him and if school can be on board these could be intregrated so he has them at home and at school. So do get intouch with NAS and look throw the dates and places of the HELP conferences. Also a good place to go to is a parent support group who have children dx/undx with Aspergers Syndrome and HFA. Have you requested any assessments yet, this may also be a good thing to start as he is starting school but first get some information from NAS about going ahead for assessments as they will let you know what types assessments there is. As reguards telling friends/family it is sometimes difficult for others to acept when some children dont display symptoms of really classic Autism and you may get, nar no way he hasnt got Autism, but Autism Spectrum Disorder is a tiad of impairments in Social, communication and theory of mind and they can all vary and have particular challenges for the child with ASD, many people still dont understand HFA/ASD and so it can be difficult to others on board, especially as your in the early stages of beginning to suspect your son has possible Aspergers Syndrome/HFA. I would first go throw the process of your son having assessments and in the meantime you could just say to friends and family that you have concerns and he is been assessed for AS/HFA. You dont have to say anything anyway its up to you. It has been lovely to read your post and meet you so see you soon. JsMumxxxx Edited November 26, 2009 by JsMum Quote Share this post Link to post Share on other sites
trekster Report post Posted November 26, 2009 You could always say to them "we think he has a disability of some kind and are investigating it" whenever he appears to behave asperger? Alexis Quote Share this post Link to post Share on other sites
Kathryn Report post Posted November 26, 2009 Welcome to the forum Pinky. It sounds as though you're doing all the right things so far in exploring your concerns. Enjoy your weekend away, K x Quote Share this post Link to post Share on other sites
parentsofdisabledchildren Report post Posted November 28, 2009 Welcome to the forum Quote Share this post Link to post Share on other sites
Pinky Report post Posted November 29, 2009 hi we're back now from our weeked away. thank u all for your lovely warm welcomes! thats true about comparing our youngest son, not in a horrible way, but its impossible not to compare them and as they are getting older the differences are more obvious. thank u for all the suggestions i've read them all and taken them on board. we do so much preparing for our son as he just has to know whats happening, where, when, how long, who with ect, that preperation for any events occurring helps soo much with his behaviour. i am beginning to understad him more now. but it goes to show, if we let our guard down. he was well prepared for our weekend away, and so well behaved, but at the lat min, hubby and i decided that he was going to the car to pak and id take the boys on for breakfast, we forgot to forwarn ES that this was happening, so he had a huge tantrum in the entrance of the hotel with about 50 people around us. he looked like a spoilt brat, but i instantly knew what he was doing and where it came from. i still wanted the ground to open up, but i was calm and didnt get cross with him, i simple held his hand and guided him away from everyone, then in t he lift i explained what was happenning, he was calmer and we went found the table easily. his mood remained down, then he ended up hitting out at me later on as he was getting fussy about which tap to use! probably my fault as my patience was wearing thin at this point as he was taking forever. its a shame coz he'd actually told us just b4 this had all happened that he was sad to be leaving. i praised him for this and reassured him about going home and having had a lovely time, so he's beginning more and more to understand his own feelings. lots of situations like this we avoid now as we prepare for things. i never go into great detail or i mite leave certain things open for change, but this helps loads. this was the only tantrum all weekend which was great. re his assessment, we are having the school meeting on thurs, then i spose we'll see then where to go. its really interesting reading bout fussy eating. my es is pretty fussy, only really likes stodge, bread potatoes cheese meat, things with same texture all the way thru. have made progress with persistence with some foods, beans he will eat if i feed them to him, and certain things only really at home? usually has an order in which he eats things too. xxx Quote Share this post Link to post Share on other sites
got the tshirt Report post Posted November 30, 2009 So much of what you have said sounds familiar to me too. My Dd3 only eats one thing at a time off her plate which is an improvment from only eating one type of food all day. Also she needs to know exactly what is happening all the time. Her school try really hard though. You have come to the right place. Quote Share this post Link to post Share on other sites
JsMum Report post Posted November 30, 2009 Look into sensory intregration too, he went into a busy enviroement too, and a lift, my son wont go anywhere near a lift, he is totally phobic, the confined space just makes him feel totally scared wits and as he doesnt communicate this in words he will use escape behaviours, screaming, kicking, running off. I use widgets so do look into a communication stratagy too, using pictures for as much as possible. I think from what you described in your last post was he found it difficult to be in the enviroement rather than he wasnt warned, though understand it is also required, J regularly needs to be told where and what he is doing, so understand this is a fundamental to thier behaviour but I still think it maybe down to where he went. J cant even go into primark due to the intence lighting, the massive openess, the mass people and the way it is all set out, so we dont go int there at all. So do look into helping him cope in large enviroments with lots of people. JsMumxxxx Quote Share this post Link to post Share on other sites
Martin Howe Report post Posted November 30, 2009 Hi Pinky and welcome its really interesting reading bout fussy eating. my es is pretty fussy, only really likes stodge, bread potatoes cheese meat, things with same texture all the way thru. have made progress with persistence with some foods, beans he will eat if i feed them to him, and certain things only really at home? usually has an order in which he eats things too. I wonder if your son has AS. Some of the things you describe were me 40 years ago, some still now. I especially love the remarks about food; when holidaying with my brother, DSIL used to say my favourite food was "good old british stodge" The great thing about this forum is the support from other members; you just taught me something about myself I knew for years but lacked a really good description of when you said "things with same texture all the way thru". Does your son have problems with liquidy foods? Perhaps that's the same mechanism if so, maybe the AS brain interprets that as a constantly changing texture - yuck Quote Share this post Link to post Share on other sites
Pinky Report post Posted December 10, 2009 it's so lovely having people to talk back to me with understanding and 'knowingness' thank u <'> Quote Share this post Link to post Share on other sites
Vanna Report post Posted December 10, 2009 Hi Pinky, Welcome to the forum. I am also new, and looking for a dx of myself. I also think this is the closest it sounds like for me, AS. I wish you the best of luck with your son in the path to figuring out the dx and understanding, self awareness, etc. Vanna Quote Share this post Link to post Share on other sites
