asperger syndrome, lost post! looking for someone!

maybe happycat ??
try here and good luck with your kid
http://www.able2know.com/forums/viewtopic.php?t=86476&postdays=0&postorder=asc&start=0

Aspergers/ASD
Hi

Did you find the information you were looking for.

My eldest was dx Asperger's when he was 11 (4 years ago). The label doesn't define my child. He is who he is. His life is extremely difficult. He is so far off the end of the spectrum that he has fallen off.....and so have all of us with him - bless him.

If you would like any info - or if I can be of any help - please let me know. His story is very distressing.... and by no means less/more heartbreaking than anyone elses.

Every child is unique and his/my experiences would be different to anyone elses.

No matter what - please don't let any label define your child. Any information offered please take as a signpost to trying to give them a better life to help them overcome their difficulties.

Let me know if you would like to talk.

Why did it take until he was 11 to diagnose him? One would think if he's so far off the spectrum that it would have been obvious at a much younger age that something was up.

Ogi, another link to check out - is this the one?

http://www.able2know.org/forums/viewtopic.php?t=100044&postdays=0&postorder=asc&start=10

Yh - you would think wouldn't you.

No matter how many times my ex and I asked EVERYONE for help - we were told - pushy parents, he's growing up, don't worry - he'll be fine etc etc blah blah.

I worked at the school (only 40 kidlets) that my son went to. He was very protected there. He was angelic at school - never got in trouble, was well liked - and all that - I would have so much trouble getting him to go to school - did anyone believe me - NO! As I work in education I called in the Ed Psychologist - I was overruled by the Headteacher - my child was a model pupil. Didnt matter what happened when he walked through the door after school and any tiny little thing that had happened at school - someone looked at him in the wrong way - which could cause a meltdown - well, that had to be down to the parents. Always down to the parents. No-one listened.

2 weeks before he started secondary school he started self harming (cutting). Finally someone started listening. My son started having counselling. It took 5 months and a threat of him committing suicide rather than attend a technology lesson at school - and hitting a police officer so he could be locked up in a cell so he didnt have to see the bullies at school - before someone finally listened to us. TOO LATE. Damage done. System let us down. System let him down.

Long story cut short - 4 years down the line - he is now in care having attempted suicide - who knows whether he will make it to tomorrow - maybe he will live til hes 90.

NO-ONE LISTENED. No-one saw his pain except for us. His masking strategies are absolutely incredible. His thought processing is ... off the wall. Sometimes it can take weeks for him to process something that someone has said - sometimes we never new what would set off the meltdowns. But when they happened - his pain, his fear, his anxieties, his very extreme nature meant he would self destruct - pick up a knife and hurt himself. He was admitted to a psych unit - dx Aspergers. He's had 4 psychs who say they have never encountered such a complex child. The 5th psych who he now sees says she questions the dx.

The whole system in my country lets these children down. I have fought so long and hard. Got him into a special school - was told that was the way to go - (Aspergers School) He tried to hand himself 10 months after he started. He was then placed in care for his own protection - thats what THEY told us to do - the professionals. Tomorrow he moves into another placement - he is 15 - hasn't been in education for 4 years - is having his own house with a "scaffolding" team of support therapists around him - in other words - taken out of society as he is so emotionally damaged - BECAUSE NO ONE LISTENED TO US - and every day I wonder if the next phone call will be the one that says he has finally given up.

He is a wonderful child - very high functioning. So clever. We love him so much. I can't take care of his special needs - his 24/7 care - and I am told to accept what I cant change - if he does commit suicide - and yes, he isn't the norm in Aspergers - tho there is no norm - then at least I am told I did everything right by him to protect him.

YEAH RIGHT.

He should have been helped when we asked at the age of 6 years old. We should have been listened to. He should not have had to go through this. Neither should we.

Everyone has let him down. I don't want anyone else to ever have to watch their child go through what mine does on a daily basis.

Why did it take so long to diagnose? I ask myself the same question every day. I guess - doctors, professionals, social workers, education - all thought they knew my child better than me. Why did it take for him to harm himself before someone listened to what was happening in our home.

Our home is no longer a home. Marriage broken, son in care - just me and my little boy in our broken home. WHY? Very good question.

Sorry - its a real tough day today - haven't stopped questioning all day whether he will cope with the change tomorrow.

None of this should have happened - he should be with his family - we should have got the help we cried out for - the label doesnt matter - our child needed help - but with mental health - the invisibility of mental health - meant no-one saw or felt his pain - except for us and him.

Wow! What a heart wrenching story. Is self-harm normally a piece of Asperger's? Is it a direct symptom or does the weight of dealing with his own differences cause the self-harm?

I know that there is a huge push toward early intervention here in the states. I am sorry that your son was left to fall through the cracks - even with all your effort.

I did run a support group for parents at one stage and a few children self harmed - but not the majority. The self harm comes from internalising his anger - his lack of understanding - his black and white world and his inability to express him emotions. That is the main problem is the inability to communicate his feelings when he has not understood something - that could be a tone of voice, a look, anything really - the fact that the weather man says it was going to be sunny all day and then it is slightly cloudy.........

in my sons world - if they said it was going to be sunny - it has to be - his inability to see "the bigger picture" or understand the world we live in - that causes massive angst in his head - it may not come out straight away - but when it does ........ and when he cant explain it ........... and when he then meltsdown ........... he just gets to a point where all the things he has said or done - the destruction hes caused, the violence that comes out - the only way to make it right FOR HIM is to hurt himself - like hes trying to balance out what hes done. There is nothing worse than watching your child cut his arms / stomach - over and over - and know that to take the knife away from him could tip him further over the edge.

Its a very cruel place to be for a child. It breaks my heart to think of the thoughts that fly around his head.

However, I do know that my sons difficulties are not the typical - if you can use the word typical - Asperger problems. He is very extreme.

If you met him - you would think he is a completely neurotypical teenager. He looks just like all the other kids. He wants to be like all the other kids. He doesn't have ONE friend - children feel to pressured by the attachment he puts on friendship and loyalty. If they are his friend....they cannot be someone elses friend. He does not mix with any child his own age. It is so sad - he really exists in this world - he doesn't live like he should be.

That is his biggest disability.

He looks "normal" - therefore he is .... according to the rest of the world.

He is a wonderful boy - I love him as he is - I wish I could make his world a better place ........ but I can't. The "professionals" are now trying.... meanwhile - I have in all intents and purposes had to give up my child.

I don't understand how that can happen.

Well, you are apparently a very caring mother who has done all she could do to help her son.

Let me explain my interest. I have long been intrigued by autism. A couple years ago I start a masters program in elementary education (ages 5-12). At this moment I am just about to finish up my masters and am working as a 1:1 with an autistic boy who is in second grade (age 6-7). He's not diagnosed with aspergers, but he has autism compounded with attention deficit disorder/hyperactivity.

Thanku

Unfortunately - he doesnt see it at that way.

Its black and white his world - if you love your child - why do you put them in care. He despises me for what he believes I am doing to him and he will never understand. Yeah - they have kept him "safe-ish" for a year - 14 months ago we placed him in care - now they are taking him from there to this sole occupancy living with "staff scaffolding" around him to try and "keep him alive" - that's the psychiatrists words - not mine.

Autism - Aspergers - ADD - ADHD - ASD - whatever the labels - its a very tough world they live in - any mental health problem, especially when it is your child or anyone you care about - is desperate.

Good luck with your work littlek. I applaud anyone who will give their time to help these children. My son has wonderful people trying to help him - they have been good, kind, sensitive people.

The "system" and the financial implications for the "right sort of help" in our society are the reason he has been let down. It is wrong.