Hi Everyone

[spudulika]

Hi everyone. My name is Louise and I have a 10yr old son who was finally diagnosed with Apergers during the week. I came across this forum while searching for Aspergers online. Due to ill health on my part in the past he lives with his Granny and Granda but they live right next door to me. We first noticed a difference with him when he was about 7/8yrs old. He has always been quiet but would interact once he was used to a situation. In playschool and up until p4 he was a very popular child. He is an only child so I cant compare him to other children, and even now I cant think of anything standing out about his behaviour before the ages of 7/8. He would line up cars, model solders, farm toys ect but he wouldnt get distressed if they were moved. He has always hated crowds but my mother is like that so I thought maybe he had picked that up from her. He has always loved lego and can make very intricate things with it (normally guns and planes). Other than those 3 things he seemed totally fine. He was overdue when he was born and was only 5lb 8oz but his development was normal. The only thing that was slightly concerning is that he has always been small for his age, at the lower end of what is considered normal, but as he didnt dip 'below the line' we were told that its was nothing to worry about. Over time he started to withdraw into himself preferring to sit in his room playing the xbox. He wouldnt go outside although he would play quite happily if his friend came to the house. It got to the stage where he wouldnt even go down town with us if we needed to get shopping. Visiting friends or relatives became impossible and if anyone came into the house he would go to his room and not come down till they left, the exception would be one of my aunts. He would also suffer really bad panic attacks where he wouldnt be able to breath properly, and he would pace the room. We noticed that his temper was getting out of control and he would have massive tantrums where he would hit out at his Granny and wreck the place. Reward charts were pointless for him, they just didnt work at all, even taking away his pride and joy (the xbox) wouldnt work either. His school told us that he had withdrew into himself and wasnt really taking part in any of the class activities, that was the wakeup call for us that it was more than just temper tantrums ect. We started finding poo hidden around the house even though he would go to the toilet 'normally' His personal hygiene was awful. We were having to fight with him to get him in the bath and washing his hair would be impossible, we would have to hold him down to get that done. He would quite happily run around with poo smeared over him! Even though he is small for his age he is strong so it was getting harder and harder to cope with. He started refusing to go to school and eventually the education welfare officer got involved. We couldnt get him out the door! Eventually he told us that he couldnt stick the noise when having to line up outside or out playing at breaktime. The headmistress agreed to him coming into school 15 mins later than everyone else and not having to play outside at breaktimes which has made a difference. His attendance is in the 80%'s now. We would have to give him precise instructions as to what we wanted him to do eg, I asked him to bring downstairs the plates and things as I was doing the dishes, he brought down the plates. I went upstairs later only to find cups and knives and forks still sitting, when I said that I had asked him to bring them down to me he challenged me with no you didnt, you said plates!! He will only wear track suit bottoms and teeshirts, we have had to get him seamless socks, he wont wear a vest and most of the time he wont wear boxershorts. If he puts anything on that is 'itchy' for him then we have the inevitable tantrum. He takes a lot of things literately.

 

Eventually we got an appointment through from CAMH's and on the back of that he has had MRI's to check for bowel or tummy problems (all clear), an eeg (still waiting on results), a hearing consultant to make sure his hearing is ok (its perfect), speech and language therapists as he would use big words and they wanted to check that he hasnt heard them being used in a situation and was using them in a similar scenario without understanding what they really meant (all good). He has also seen OT who mentioned sensory problems. He seen a child psychiatrist who said that it may be aspergers but she couldnt be sure. He has had a classroom assesment. He then seen someone who deals with autism (for the life of me can I remember her job title) who said he ticked some of the boxes but not all of them and they wanted to assess him in a group setting. He had trouble telling stories from pictures, or using toys for something than what they are obvously designed for, I think they said it was improvising. He could describe how he felt when he was angry but that was the only emotion he could describe. We had the group assessment 2 weeks ago and the results on Wed past and they said that he definatly fitted the criteria. Most of his responses are 'learnt' responses. It dosnt come naturally to him and its as if he has learnt to say what is expected of him. There are lots more things but I have just realised how much I have typed and I have probably bored you all to death if you have even read this far.

 

He is a very loving child and if Im in pain or feeling sick he will do anything for me to help, he knows everything there is to know about world warII planes and since seeing Peter in CAMH's his temper seems to be a lot better. He is going outside more often and I have discovered if we tell him well in advance that he has to go somewhere then its not such a problem, we have to keep reminding him though. When they told he it was Aspergers I had a massive sense of relief. I want him to be able to look back on his childhood and remember it for being good rather than having angry frustrated memories. We can now get the right help and support for him. I was terrified when it was first mentioned but no matter what, he is still my baby and things could be so much worse. With a little help and support he can lead a normal life (if there is even such a thing as a normal life??)

 

I havnt told him that he has Aspergers yet although he has an idea. Im not quite sure how to go about it so any advice would be greatly apprieciated. I look forward to getting to know you all a lot more and thanks for reading.

 

Lou x

[philtfa]

Hi there, I don't have any advice for you but as noone else has said hello yet I just thought I'd say hello. You sound like a great mum.

 

Hopefully somebody will be along shortly with some wise words.

 

Good luck,

 

philtfa

[darkshine]

Hello, I'm not a parent and don't have a clue how to approach this but I can give you a link to a page with a whole load of info related to this if it helps...

 

The Link

 

Sorry I can't be of much help

 

Darkshine

[spudulika]

Hi philtfa, Thanks for the welcome

[Mandapanda]

Hi spudulika

 

Welcome!

 

Reading your post rang many bells with me. My youngest son was similar to yours, in that he 'hid' his AS very well - he spent years using all his energy blending in. He was a very quiet child at school, always wanted to watch for ages before joining in etc. Even though my eldest has AS, we missed/overlooked/ignored many things which should have alerted us to his difficulties, but as I said he was very good at hiding it (not deliberately of course), and quite different to his brother.

 

The poo situation sounds to me like it is his sort of reaction to his emotional state - he was struggling with the noise and unhappy but didn't know how to express it.

 

Star charts never worked for either of mine, and I remember one morning arguing with the eldest and telling him to put his jumper on and him saying to me "it's not a jumper, it's a sweatshirt", and he kept throwing his little brother's favourite toy in the bin and when I told him not to throw it in the bin I kept finding it next to the bin and he said "you said not to throw it IN the bin".

 

I'm so pleased CAMHS are being helpful, and that school are being flexible. We didn't get that support and ended up deregistering Aw, and whilst home edding is brilliant and amazing, I would not have chosen for my child to suffer so much between going to school and home edding.

 

Grandparents can be a fantastic stable influence in their lives, my in-laws were with my two. And how brilliant that you are just next door. Good luck to you all.

[spudulika]

Hiya darkshine, thanks very much for the link, its good reading and I think it will help a lot. Ive just noticed your post is above mine yet today is the first I have seen it, I think we must have been typing at the same time

 

Hi Mandapanda, thanks for your reply. Its very helpful to see other peoples stories and how day to day life is dealt with, I hope to learn so much from everyone on here. Im not sure whats going on with the poo'ing to be honest, its always very small bits and by the time we find it its always rock hard, as if its a couple of days old even though it wouldnt have been there the day before. When we question him about it he claims he cant remember doing it. All medical tests were clear so he has to have some level of awareness that he is doing it. The rest of his behaviour Im slowly starting to understand but its so hard when he dosnt really understand it himself.

 

Thanks again everyone for the replies, I really do appreciate them

[darkshine]

Hiya darkshine, thanks very much for the link, its good reading and I think it will help a lot. Ive just noticed your post is above mine yet today is the first I have seen it, I think we must have been typing at the same time

Yeah I just pipped you at the post there I never saw yours til much later either.

 

Want a tip?

 

F5 key. This site has little to no refresh rate on the web pages so if you want to see if people have responded quite quickly just hit the F5 key (on your keyboard), it'll reload the page and you can see if anyone's responded before you log off I learnt this from my very annoying internet provider that also has no refresh rate on the pages so if something happens (like getting a message) you don't see it til the page refreshes (hence F5) the knowledge comes in handy here though.