hi everyone

hi oatie,

That would be a great life! at times i feel like doing that too! if only i didnt hate gardening oh and my own company! lol!

take care

sam

x

I am laughing today but boy I needed to get that one out!

Eco living, home education and self sufficiency look really nice on bad weeks..just me, Brian, the boys and some goats..no one to deal with..ahhhhh...

Lovely day in the peak district today..it's made me all wistful..

Oatie

Hi Oatie lol u sound just like me somedays ...its good to rant thats what we are here for ..remember just keep your chin up and laugh  xxxx

Yes that all sounds about right..sigh. Infuriating isn't it?

My Mum said yesterday 'oh he's just being a normal 5 yrs old'..and at that particular time he was. I said yes 'he is at this moment but this isn't the type of behaviour that is a problem'.

Again his  twin brother will be playing with the other kids in the playground but O will be in the corner looking perplexed. If he tries to join in with the other kids (which is becoming less frequent now) he gets it so wrong that they exclude him from further play. If someone says 'I'm not playing with you' he becomes angry or distraught because he thinks that means forever. He can't understand that people fall out and become friends again. The vast difference in social ability between my boys makes me think why doesn't anyone at school see this?

Sorry I get angry and frustrated as the last thing we need is more professionals in our lives...why would I seek out extra intervention if I didn't really believe he needed help? Do my family think I have Munchausen by Proxy? 

Added to this this week my MiL told me that 'yes' she believes my partner has Aspergers but 'it's nothing to do with Autism he's just bone idle'. It would be funny if it weren't so offensive..what a little ray of sunshine that woman is. My poor long suffering partner, no wonder he has no confidence and is defensive. I am screening all calls for at least the next 20 years so I can avoid all conversations..

Oh heck sorry it's turned into a major rant now...I am so glad I can speak to people who know where I am coming from on this subject..thanks for listening.

Oatie

x

Hi sanders,

Everything you have said rings a bell with me I have four children. My Eldest does have meltdowns and can be very emotional and angry at home but when he was younger and out at school etc he didnt, he would bottle it all for at home. It makes it difficult because the schools etc dont have any difficulties with his behaviour just had to deal with his physical needs that were due to his dyspraxia. I think this is mainly why he wasnt diagnoised with AS till he was 16.

My youngest doesnt meltdown at all he is always and i do mean ALWAYS happy, which sounds great at first but he has no emoional understanding of things and believe me when things are tough and you have a happy bubbley 11 year old jumping around the house it is very draining. People say he is just immature and a bit hyper he will catch up, but the immaturity gap between him and his peers is just getting bigger. He still inturupts all the time he winds his older brother up untill he goes into meltdowns! chasing him for a cuddle when everyone knows you dont touch him. Whilst laughing!! ahhhh!!!

Im so happy you have good friends but a bit wrong of nursery teacher to off been talking about your kids! but well done your friend for putting them into their place.

Best of luck

Sam

x

hi , i am a mother of 5 kids one of my youngest has beed diagnosed with adhd / autism ..the school and the nursery have completely denied that there are any problems and have been completely awkward when the have been asked for reports by speech therapy in fact i have been waiting for 3 months for reports for both the twins as my non asd has speech problems ..and they cant give me an appoinment until these reports come through ..thank god for support from friends ..one of the nursery teachers actually went into a local shop where my best friend works and was discussing how cute they were on their first day at school . my friend happened to say i just hope wee mac (asd one ) will settle in ok ..the teacher replied well we've never had any bother with him hes fine ..to that my friend answered well once u get to know him and his asd traits i'm afraid its very obvious .. through discreet observation at nursery i witnessed my son regularly standing on his own banging away on the desks with things and completely having no eye contact at all ..just because he doesnt become violent or scream out here they think there is nothing wrong :( i have been watching the twins in the playground of their new school and my non asd is running around shouting and playing with all the other children and my little one is wandering around on his own ..sometimes i feel that they are just turning a blind eye  .. its very sad     

Hi all,

I know what you mean oatie, I know several people who dont spend much time with my kids and still maintain that there is nothing wrong.

Thats CAMHS refering my youngest for formal testing, I still dont know if im doing the right thing but i think it is neccesary before he starts secondary to know for sure what challenges he has. He is very different from my eldest but im trying to remember its a big spectrum and he could be on it in a very different way.

I agree that the united nations job would probably be less stressful! I hope that in time you will be able to say to people "look how well my child is doing now that they have the right support", with your head held high because you know you were right to fight as this stage.

Mind you no doubt you will probably get a responce from some people like "well i did tell you they would grow out of it!" lol! I have had that said to me when they see my 16year old sitting calmly reading a book, i feel like screaming he is reading the book because he cant interact with you, he doesnt know you!

Oh dear starting to rant! will go now.

Remember smile and nod at thoese who dont understand , talk and cry with thoese that do understand.

Sam

x

Thanks..it's hard isn't it when people say 'are you sure you are doing the right thing and aren't you scared they'll 'label' your child etc etc'..these sort of comments are unhelpful in the extreme and I have been hearing them a lot lately from the family.

It's especially galling when they spend so little time with my children. Of course I don't want this to be happening to my kid but what choice as parents do we have but to listen to our children and try and get them the best support we can..we are all struggling daily negotiating our butts off with the school, health professionals, camhs and trying to find our own management techniques that work for our kids.

Sometimes I feel a job in the united nations would be less stressful right now. Thanks for listening and posting your experiences..it really  does help.

Oatie

xx

Hi to all!!

I've been relatively lucky in that my son has just been diagnosed at just before his 3rd birthday.

Initially I had a lot of work convincing anyone that there was something wrong with him - with my son is was massive developmental delay that I first notices - at 13 months old he still couldn't sit up by himself and all I got was "give it time". Family and friends weren't much better and just kept saying "give it time", you're being a pushy mother sort of stuff.

I think the one thing I've learned from my experiences so far is to trust my own judgement and that's what I'd say to you. It's hard and when you're already exhausted from dealing with your children you don't have the energy to go and fight with professionals much less those close to you but you know your children better than ANYONE and if you're sure of your judgement I say keep on going and pushing because it's vital to get everything that your child needs - the world is going to be tough enough for you and them without trying to do it without the right support and help.

{{{{HUGS}}}}

Hi oatie,

Thanks for the support.

Im also now pushing for more support and help with my kids. I met with my eldest sons psychologist on friday who is now encouraging me to have my joungest son formaly tested for AS through the CAMHS unit now before he moves up to secondary school next year. Its just so difficult if you cant get the support from the school, CAMHS went to the school and observed him and the report was interesting to say the least! if i was his teacher i would be screaming out for support with him. Do you think the schools dont want a need identified so that they dont have to deal with it? or is that just my suspisious mind!

Best of luck to you in your search for answers.

Sam x

Hi Sam

I can totally relate to what you are saying and I have a 5 yr old waiting assessment. I am having the exact same issues with school as you are. I go in, talk about my concerns, how unhappy/angry/frustrated my son is and it's all 'oh he's fine'..then I am called in because he has attacked one of his peers 'for no reason'.

I finally spoke to a professional that really listened this week. It was scary but a relief too as from the questions I was being asked I knew what she was thinking. 

I took my sons on a very brief, well prepared for trip to the shop today and I had a nightmare meltdown to cope with. I sat at home afterwards with my head in my hands feeling physically battered and mentally demoralised because I was at a loss as how anyone could not see how frightened and angry my poor boy is right now.

On reflection tonight I am more determined than ever to push and push for answers and the right support. The professional I spoke to this week said from what you are telling me I cannot believe how the school can say there isn't a problem. The parent support worker even added to the CAMHS that this was categorically NOT a parenting issue and that I had be more than fair in my dealings with the school and that she felt the school were ignoring my concerns and giving conflicting reports to her and me.

SO hang in there you are bound to feel this way, it's hard being a parent at the best of times but battling against the system is more draining than we give ourselves credit for sometimes. You're are doing your best and you will get there.

Keep posting there are always people around on the boards to listen and I have found it a huge comfort reading your post and knowing it 'isn't just me' and I am not 'mad' 'insane' or 'attention seeking'. I could relate to so much you were saying. Shame we have to go through it but we love our kids and would battle on regardless knowing we are sometimes the lone voice fighting their corner.

Take care

Oatie

x

Thanks for the welcome, you will prob come to regret telling me i can "rant" as thats all i seem to do. lol!

Cheers

Sam

Hi Jakethesnakesmum and SamF

On behalf of everyone on the forum I would like to welcome you both.  There are so many people on the forum who will be able to understand exactly where you are coming from and the situations and concerns that you have.  So many of us are parents of children with AS or have AS themselves.  Hopefully you will be able to gain invaluable support from people who are going through what you are going through or have been there and have amazing advice to give.  Those with AS provide an amazing insight in to the world from an AS point of view, something that most of us have no idea or understanding about and which enables us to have a small understanding of their day to day life.  The forum is here to provide support, make you laugh (and some times make you cry) and is a great place for a "rant" if that is what makes you feel better.  Please continue to post so that we can help in any way that we can

Take care

ColinCat

Hi Amanda,

Im very new to this site but not new to the challanges you face. My eldest is 16 and had AS and Dyspraxia and hypotonia. I have four children the youngest is 11 and he is hyperactive and has some signs of also having very low levels of AS too.

I still have people telling me he is ok for them and so what if he isnt quite like other people. I also have other people flatly refusing to have anything to do with him. The teachers always say everything is ok then dump problems on you when you least expect it. Dont know if it helps but everything you are saying and feeling is normal in our world.

We still have bad days but we also have good days, My son getting his exam results and making it into college was an excellent day, i know his first day at college will be a bad one with massive meltdowns due to how different and socialy challenging it will be, but i also know that we will get through them and that there will be more good days for him.

I do see myself in you 10 years ago so hear is where I am now. I  know that I am a good mum and I know that no one else understands and reads my son as well as i can because i am his mum and i also wouldnt change this , you will find this too. It no longer worries me what other people think about him and how he behaves, Ive learnt to talk to the people who do listen and understand, and to nod and smile at thoese who dont. I still get angry, I still cry, I still make mistakes and get loads of things wrong but Im still just his mum doing my best.

From reading your post you have done everything for your little boy and are getting the help and support for him that he needs, hopefully you will get the support you need from this site. I think you are doing a great job, cry and scream if you need to but remember to laugh and congratulate yourself too you are doing one of the hardest jobs in the world, being a mum.

Hope this helps in some small way

Sam