New here with 6 year-old just diagnosed

[LittleMissAlien]

Hi all,

 

I'm Shell and my son, Jay, has just been duagnosed with Asperger's. I've always felt he's been a bit quirky and hs's had traits since birth. I'm used to dealing with him and find him fairly easy to handle. Late last year his school started to lose patience with him and told me he was not behaving appropriately. The child they described was almost unknown to me! I've been through the local child development team with various appointments for the last 10 months and we finally got our diagnosis 2 weeks ago.

 

We've been referred on to the LEA now and I'm hoping to get things sorted for him when he returns to school in Septrmber.

 

Looking forward to chatting with you all!

 

Shell

[oxgirl]

Welcome Shell, early days for you and your son and stressful too, I remember. Good luck with getting the support for your son that he needs.

 

~ Mel ~

[Tanya52]

Hi Shell,

Welcome aboard and good luck with your quest!

Love

T

[Monkeysmum]

Hi Shell,

 

I'm also new to this! My son is 6 and although all the experts (teachers, doctors, speech therapists etc) say he has ASD, (more Aspergers) he has yet to have an official diagnosis. However, he has already been moved to a specialist autistic school, which is a relief! He just couldn't cope at school and it was obvious from the minute he started nursery that something was wrong. Noise really bothered him and too many people. He needs routine and structure and explanations as he takes everything literally.

 

He doesn't really seem bothered by anything that happens, although he doesn't understand why some kids don't want to be his friend - which breaks my heart

 

We've just been out for a bike ride and as we came past the park he asked if he could go. But I said no, as there were a number of kids already playing there and I just can't stand seeing kids laughing at him or not understanding him, when all he wants to do is make friends and make people laugh.

 

But a couple of kids started walking over to us, saying "there's that retard with the glasses", "the one with the stupid songs". Even though I was right there, they were calling him a retard and laughing!!!! Luckily, my son didn't hear and I waited to come home until I cried. Am I overeacting?

 

Leah x

[Shnoing]

... But a couple of kids started walking over to us, saying "there's that retard with the glasses", "the one with the stupid songs". ...

Next time, kill them on the spot: in self-defence.

[Tanya52]

Hi Leah,

 

It was a soul crashing experience. I'm so sorry! Trust me, you can't fight all cruel kids who are throwing their emotional garbage at your son. The best an AS can do is to build a set of personal social tools. ALL we've got can be used as our assets. Teach him HOW not to become a victim. His life is precious.

 

http://www.bbc.co.uk/sn/tvradio/programmes/horizon/broadband/tx/temple/

[Merry]

Amazing link, thanks Tanya52!

 

Hi LittleMissAlien, it must have been a huge shock to hear that Jay's behaviour is so different at school! This is very typical. I have aspergers. I remember my school days only too well. Like you, my parents were used to dealing with me at home, and we had norms in our family which we didn't think too much about, like me needing to spend A LOT of time in my room by myself, painting, reading, drawing or just sitting in silence. I didn't like to watch or even hear the tv, covered my ears to avoid hearing the phone ring, not wanting to join groups or socialize, would only wear particular fabrics and colours etc....as you said about Jay, quirky! I wasn't always easy to deal with but when in my own familiar environment, I had no problems really. It was all about doing things in a way that suited me. I often wish my parents could sign up to this site and offer advice, as they've had 33 years of experience in parenting someone with aspergers and they would definitely be able to sympathize! School is a very harsh environment for kids whose well being depends on familiarity and personal rules....and it's not that we're just fussy, we just see the world completely differently. When we can't fit in with the "crazy" rules and ways most people choose to live, it's not that we're making a choice to rebel, it's because our minds cannot work in the same way as the majority. We generally compromise as much as we possibly can in order to please the world around us and can become experts at appearing normal, but actually, for me there was a lot of underlying resentment for having to. I felt the adults around me should appreciate and perhaps say thank you for my efforts to please them, because it is not easy and I only tried to fit in to please others, not because I wanted to be like them. Most `normal` types for example, follow rules blindly without questioning them. That is something I do to please the world around me but goes against everything within me that feels natural. For me, it seems rational that if I am presented with a rule which has been made up by other human beings, I should thoroughly examine it and decide whether it fits with my idea of what is morally correct, whether it is a necessary rule, and whether it should actually apply to me. If I don't understand the reason for a rule, I am unlikely to see the need to follow it. School is full of backwards and unnatural ways of doing things, full of what I felt were unnecessary rules, and teachings which no one ever asked if i wanted to learn. Surely that's the first thing a decent human being should ask when trying to teach another human being: "Is this something you would like to learn, or have a need to learn at the moment?" So I personally feel that I only started learning after I left school, and have been able to decide my own curriculum. In school, the best I could do was hide away, either physically, or just within my own mind to avoid the chaos, over stimulation and artificial non-sensical rules and absurdness of the place. It seemed to me like watching crowds of people following each other around and doing what they were told, thinking what they were told to think, and remembering what they were taught to remember, for absolutely no good reason..........and the strangest thing, was that nobody ever questioned it. I felt like most people were sort of sleep-walking because they never seemed to fully observe and think. My experience with aspergers is that I am uncomfortable existing in a way which other people decide I should, if to me, that way of existing makes no sense, and I don't see why I should have to conform, just because someone else has decided I should. What makes the majority think they are correct? For no reason other than being the majority. I'm not saying all people with aspergers feel this way, or even that it's right, but that's how I am, and so maybe it could give a little insight into some of the things a school child with aspergers might struggle with. I hope little Jay will be supported well when he returns to school! The good news for people like us is, that we don't have to conform ALL the time.....and one day, when his school life comes to an end, he will be able to learn his way, and live his way.......and then, you might find, that he will be free to exist in much the same way as he does at home when he is with you, and like me, his aspergers will hardly be noticeable. An adult is free to think the way they wish and live the way they wish as long as we harm none. - A right which we do not give to children outside of the family home. I look forward to hearing how it goes for Jay now that he has been officially diagnosed!

 

MonkeysMum, what you experienced is very harsh. I don't know what to say. Rejection is not easy for anyone. My daughter is only small so we haven't got to the friend-making stage yet but it must be heart breaking to feel rejection on your son's behalf. Confidence only really comes with time. All I can say is, from my perspective, it's your son's sensitivity and loving heart which is the correct way to be, and I'm hoping it will just be a case of him waiting for the rest of the world to catch up. Your son is a child of the future........while most are still breeding children of the past........(perhaps). I would certainly rather have a world filled with creative, sensitive, free-thinking and thoughtful people than what we have now. And people have to admit, the "normal" people haven't exactly done a great job so far of creating a beautiful, peaceful and equal world for all humanity and nature. Maybe it's kids like your son who will grow up to change the world. Hopefully, as with me, life for him will get easier as he grows up and begins to appreciate and nurture his `positive` differences instead of letting others shape his self-esteem. For me, as a kid, I found out that knowledge would be my power. If you have a strong mind, people will find it very hard to bring you down. So what if he has his songs? I have mine. I like them very much. I still sing as I walk down the street. And when people look at me, I look them directly in the eyes and give them a massive smile, and hope that they can feel how much I love them regardless of what they might be thinking about me. Who cares? One day, your son will have the freedom to be who he is........and trust me, the right friends will find him.......it might just take longer than it does for most. Who needs lots of superficial social interactions anyway? Better to have a few good solid dependable relationships in my opinion!

 

With love and greatest respect. X

[Tanya52]

Thanks Merry!

[Merry]

 

This is what autism CAN do, if given the chance.

People with Autism don't need to be taught things other people have already learned before..........that's not why we're here.

People with Autism have come to change the world.

We came here to be the teachers of new things, whether considered big or small.

While the world focuses on forcing these kids to learn to tie shoe laces or stick to educational plans and timetables, they are losing their valuable time for thinking, processing, obsessing, calculating, feeling, creating, or whatever it is they NEED to do for the benefit of mankind. We could be missing out on opportunities to learn from them.

 

This is my honest opinion. X

[trekster]

Hello and welcome, it is always refreshing to see parents who accept their kids and really wish to help. Well done for seeking help when they were young and trusting your instincts.

 

My diagnosis was missed until age 16 even though I was speaking quite formally. Medical professionals were too busy concentrating on my speech which needed 6 months intensive therapy and my feet which could have left me in a wheelchair 21 years earlier. I have a strong will and determination to feel the fear and do it anyway and I realise how easier said than done that is.

 

The most difficult and embarrassing part of autism is social naivety. As an adult I watch programs such as watchdog and also do research around rights and other consumer help. I am trying to get myself well. Social stories can help some kids as can access to literature both for the autistics and their parents. In a way because they cant tell people are laughing at them they can be immune to the behaviours of others. Kids tried to get me to steal clothes from a shop when I was a teenager, little did I realise they were telling my mum behind my back nasty things about me which she believed and spread it to nasty people in my life.

 

Social stories can teach kids how to recognise what is a real friend and what is a fake one. Be wary though as some kids will tell your son to 'listen to me your parents cant help' to try and undermine you. Answer your kids questions honestly and use language that they can understand.

 

A few books ive found really helpful are 'multicoloured mayhem' by Jacqui Jackson 'sensory perceptual differences in autism' by oldga bogdashina. Theres also a few books 'mum is that a human being or a sheep' which gives valuable insight into a parents world of autism and 'Asperger syndrome a guide for parents and professionals'.i find 'the complete guide to Asperger syndrome' a complicated and confusing read.

 

There are educational and parenting sections on the boards. Theres also parents and autistics themselves (even autistic parents) who can give their insight into methods they've tried and tested to help themselves/their children. See if you can find a hobby or interest that they can engage with outside of school. I tried dancing, guitar playing, brownies, guides and sunday school all before I had a diagnosis with a diagnosis I could have had a much easier childhood.

 

Another possibility is to apply for child DLA for your children I know that it can be difficult to accept your children as disabled but if it helps you pay for respite care, special diets, sensory toys or other interventions to help your kids then it can be worth the hassle of filling out the forms.

 

HTH