Hey all,

Finally got Alex diagonsed as having Aspergers.. took almost a year but we got there.  

Now where to from here??  We just had our follow up appt with the paediatrician yesterday but unfortunatly the Psychologist we seen hadnt sent her full report yet.  So we now have a new psychologist to contact (as the one we seen was a 'diagnosis pyscholohist, not sure what the difference is) and have upto 5 sessions with her and possibly speech as well.  Seems like we are starting all over again but glad we have our first answer and now to make a plan of how to help from here.  

My real question now is, how do I go about telling Alex (his older brother & Etc) that he has Aspergers?  How did you all go about that topic?  He has been asking me why we have to keep seeing all these Dr's and I have just told him we just need to have a chat about behaviour. 

What about friends/parents of friends etc? Alex has recently found a best friend who loves to come over and play and Alex has gone over to his has a few times, his friend asked him to have a sleep over and Alex didnt want to. (I didnt think he would)  My family know we have been going through the process of getting a diagnosis and all have been understanding, just nNot looking forward to have the chat with his older brother as he can be quite mean and I dont want him to try use this is something to tease him about.   

Well hopefully I can get some advice from you all.. 

Thanks for your time

 

I know DOCS in australia has a bad name but they have a program called Brighter Futures which I have found great. They are giving me a one on one training session to help me with the aspie side of Shane and also helped with some costs relating to Shanes medical and psychological wellbeing.

 

Hi,

Just joined. I'm amazed that all these stories are so similar to mine.

My son is 12, and I knew there was something different about him from about 3 years old. He had problems at creche which followed onto problems at school. Like many others here, he could read at an early age and is really quite bright. But his behaviour was 'off'.
He was almost impossible to get out of the house to go to school. I got him a counsellor who was fantastic and made some headway there. But behaviour at school was still not great. His Grade 1 teacher set him up with the school counsellor and that should have been a godsend. The counsellor left the school after a couple of months not much help there.
I took him to the dr for ADD/ ADHD but he didn't think my son had this. A couple of other counsellors came and went.. but no real advice or help. The chopping and changing as it turns out was not beneficial at all for a kid with AS!!
We eventually got a psychologist at the school when he was in grade 4(he's in grade 6 now), who was the godsend. She kept in constant contact with me after his sessions and narrowed it down to possibly Autism. YAY! I wasn't going mad. Further testing diagnosed Aspergers.

I'm so grateful to have a 'label'. It made it so much easier to deal with his behaviour. I stopped getting mad at him for playing up and after googling my head off, got heaps of tid-bits of advice.

He is coming along great now. No pre-packaged foods, as little preservatives as possible and fresh food. He has his moments and is always the centre of his world, but we deal with it.

Good luck to everyone :)

Hi all,

Just wanted to do a quick introduction as I have just joined this group.

Im a mum of 4 boys, my 2nd son Alex (7) is going through assesments at the moment as the school thinks he has high fuctioning autism ( I think he may have aspergers from reading up about it on the net)

Our Pedeatrition*(?) isnt 100% convinced that he has Autism so we are still doing more testing and now have to wait to see a pyschologist on the 23rd of this month which I am really looking forward to.

Anyways I just wanted to say hi for now and look forward to making/reading more blogs soon.

Carrin

Its been a difficult year so far but are on the way up now. Shane has been suffering from severe bullying for the first 6 months, since my brother and I approached dept of education and DOCS shane is getting more assistance at school. Although still very difficult for him, I am learning that you have to be very vocal and tough to get help which is appalling. I also have found that allowing others to help me discipline does not work, it is very confusing. Whilst a family member took over and disciplined shane his behaviour detiorated, once I stopped allowing this shanes behaviour dramatically improved. Only 1 chief works for these kids thats for sure.

On Wednesday we start at the Neurofeedback clinic in Coffs will let you know how it goes. Plus Shane has now been diagnosed with Sensory defensiveness and needs regular therapressure. Unbelieveable more and more is learn't when you see an OT. Ours is fantastic

what tests are done to diagnose aspergers coz al that happened with my son was a point checklist and an hour of observation (with him with adults-no kids) and then three weeks of my own diary taking as well as the day care centre he attends.

 

Doing a 3 day workshop. Its brilliant when I can I will type up notes. Trying stuff out on shane already and for the first time in months he started the night in his OWN bed. Will keep you posted

Marg

visit went really well. Got to speak to a specialist for an hour and set up some solutions which will come out in a report soon. I left feeling that Shaney may be ok after all. I have been so scared as I want the best for him. He is so unhappy and I fear that if we do not sort things out for him that he will sink too far into himself to save him. So hopefully this is a corner and now we are on the right path

hi i am looking for some insite from a sufferer of aspergers about a situation as i do not suffer it and well not sure what to make of it.

my hubby wanted some space to sort himself out (he suffers for aspergers) any ways he has taken a lease out for sixe months which i have not stood in his way actually i was proud of him wanting to take steps to help hime self with his giving up smoking and other stuff.

any way our lease has come up where me and the kids are living of which he is still on the lease as it was expected that he would mpove back after his spell out of here.

when the lease arrived i rang and told him he then told me in aggressive mannere that he was in no way signing that lease as it was way too much money. which left me kinda speech less as well what was i supose to do given that there has been no sign of him being ready to return yet.

i sat on it for a couple of days and then asked him about it he said he never said that when i told him that yes he did he then changed his story to saying that he was joking about not signing the lease can i not take a joke any more.

when i said that he did not sound like he was joking he then told me that he will never joke again.

please help me interprte this confusing mess.

my thoughts were that his first reaction was the trueest and that i should follow that

please let me know your thoughts

Hi all parents, my lad has Aspergers Syndrome. His psychologist calls him and all her patients Aspies. We are all told about the different aspects of Aspergers, but how much do we really understand all of the information that we are told about or read about.

I have found a brilliant book called LOOK ME IN THE EYE, by an Aspie called John Elder Robison. John was diagnosed when he was 40 and the book is in his own words about how he actually felt when different situations arose, when he was a child and teen.

This book has really opened my eyes as to the way my son may view situations differently to you or I. It was a god send to me and I urge all parents with an Aspie to read this. Things will suddenly make sense because of the way this book was written.

Shane has an appointment at Minds and Hearts on 29/09/08 it is quiet expensive but DOCS have paid for it as Shane needs it so bady an I was unable to find enough money. Its in Brisbane so about 4-5 hours travel in train and bus so shane is freaking out a bit But hopefully will be a good thing for him. Will let everyone know how it goes maybe it would help some others?

Marg

This coming week on Catalyst ABC 1 TV 8pm Thursday there is a segment on Aspergers. It is also on at 1.30pm Tuesdays on ABC 1 It is also repeated on ABC 2 Friday 5.35pm.

I'm sorry to hear things have been so hard fo you and Shane.

I also have a 7 year old (dx with high functioning autism) who is a brilliant reader but struggles socially. 

If you want we can brainstorm a few ideas? I used to work with autistic children.

 

Thought I was doing th e right thing moving to an area with heaps of kids. Obviously not. SHane is struggling big time. He loves the kids but its too much and the parents although they like shane get short wtth him and even when he is not the one being naughty he often gets the blame. He and I are becomin alienated from everyone. I don;t know what to do. Am thinkin I might talk to my ex about us moving into the house we jointly own as he is mostly living with his girlfriend now.... just scared of making the wrong decisions again

Hi, Shane is doing ok, ups and downs. The hardest is the social side but he now has a teachers aide all to himself and t hat has helped and we do loads of role plays. Shane is very visual and he seems to pick things up if he can see what to do. So we often re enact situations and try to work out a positive result. I also told shane he had aspergers so he feels he is special and unique and not asking whats wrong with me all the time. He is still the most beautifully sensitive soul and I am so grateful for him

My son got a great school report academically speaking but has been left out of the enrichment program, I feel this is because he needs more support and one of the conditions is a degree of independance. His report points out social skills issues and gross motor skill issues. Ok so I have organised a physio assessment and put shane in little athletics but after spending about 240 hours this year with shane doing social skills training am unsure what more I can do to help him with his social skills .....someone help me please

How are people finding teachers and other parents? I find some are understanding but some still blame the parent. I find it very frustrating one minute I am a poor parent as I am tough on my boy trying to ensure he does the right thing the next thing I am a bad parent cause I am not tough enough. I find teachers too put so much pressure on the kids not just our aspies. My son was 7 in july this year. He is reading at at 12 year old level with and 8 year old comprenhension which is apprantly not uncommon in aspergers but they are pressuring him and he was told that he was back down the bottom of the list because of his comprehension and understaning. he is 7 for heavans sake

I am reading a great book at the moment titled "look me in the eye" my life with aspergers. This is not written by an expert though he is an expert on aspergers as he has it. He is telling the story of his life living in a time when this was not diagnosed. His brother is the author of running with scissors so I want to read this too. Anyway I want to read this as I feel that someone close to me has all the symptoms and reading this it says that 1 in 150 people has aspergers so if this is true how many undiagnosed cases must there be. I am trying to read all I can on this but it is amazing I can't seem to get a grip on what I am looking at if you get my drift. None of us are really normal and if we were how boring but this is an eye opener to me. Thanks Winnie for your story too.

My husband, did not cycle today, something he generally does to keep his mind from obsessing. Now, because he is mentally a physically wired, he decides to tune the piano. Fine, it is perfectly in tune, but who am I to disagree. So he sets to. He then starts to measure the resonance? as he has found an anomely in the vibration. Or some such geek speak. I go in and find that the damn thing is wired up to the computer with all sorts of gadgets to measure this and that. He sets off to bed at 10ish, to get a sound seven hours in before cycling the 30 miles to work. Peace reigns.

Suddenly I hear some idiot playing the cello, yes my Husband. I go rushing in to stop him waking the neighbours. He could not sleep, untill he found out if this anomely, was prevelent in all stringed instruments. Give me strength. We have at least one of every stringed ruddy instrument, you could think of , and he wants to test them all tonight. I think not. He is now, back in bed, but is so intent on working out the reasons and paterns, behind this theory, I suspect that he will be up and around again soon. It is going to be a long night. Mostly, he can keep a project or obssesion on hold and work it through to a conclusion over a period of time, but some times, he just gets obssesive and cannot figure that the rest of the world is not really interested, or as focused as he is. Especially at 11 oclock at night.

I can see that he is going to have a foot in mouth week. Just as well his collegues are forgiving and understanding. His inability to empathise with others at these times, makes things quite difficult. Roo will be engaged by his obsession. Piglet however will be sidelined  this week, or at least for the next few day's untill he comes round and calms his mind. Piglet is a Daddy's girl and these, lows, are very hard for her. I have to stand at the door and tell him to hug her, I have to drag him back from his obsession and tell him what to say to her, or to get him to play a game, or do a jigsaw. I have to stand and make sure he does not wander off part way through and unintentinally, dismiss her.

I can take it,  Roo can go where he goes and share the wonder.  Piglet however does not understand why, her Daddy, who loves her and genuinley cares for her, will not react when she falls or hurts herself, does not want to read a book with her, when he is caught in this obsessive cycle. Living with Aspergers Syndrome can be very hard on the children. Something I never really appreciated, till I became a Mum. He does love his children and he works very hard at trying to show it but sometimes, his own needs take over completely and uterlly.

Luv to you all, just really needed to blog.Winnie.x