Me and nursery teacher discussed our concerns about ds today - feel so overwhelmed - long sorry!

[KaySamuels]

I have always had some niggling concerns about ds and it seems his nusery teacher has too. (He is 3 and a half btw)

He is toilet phobic so poos his pants

Is obsessed with toy cars and Thomas the Tank (knows every character's name and colour), and buses.

Lines up objects (not just toys)and becomes unconsolable if they are moved even slightly out of line. Same with towers of blocks.

He has a staple book, and a handful of dvds that he knows every word to. He got a new dvd recently and knew every word the third time he watched it.

Likes things to be 'whole' so a pizza is altogether like a 'window circle', they had a toy one at nursery today and ds was sobbing because someone removed a piece.Same reaction if a puzzle piece is missing.

He has brilliant vocabularly, but talks very formally like a little old man.

Struggles if routines are changed, likes to know in a morning where we are going, what we are doing, who is coming (I childmind).

Gets upset at nusery if an event happens without him being prepare for example coat on time with a prewarning.

I find I adapt conversaion to him as I know what helps for him to respond.

He has also recently developed an obsession with signs.

Teacher said she was pleased I came in to talk to her and had noticed the same things during written observations of him. Has said after half term will call in Head and senco team, with possibility of getting him someone in to nursery to work with him.

She was really nice and I was glad in a strange way that she had noticed but I feel so sad for ds. I don't know how this will affect him or what will happen - feel lik world has been plonked on my head upside down. Has anyone been through similar??

Hi KS - Just wanted to reply to you. You are just where I was about a year ago and I just wanted to tell you that you will get to a point where you hardly even think about it anymore it just IS, iyswim. I have just posted about our first assessment interview, which was yesterday . Your DS sounds EXACTLY like mine right down to the script from Peppa Pig only we had one from Max and Ruby as well.

Also know exactly what you mean about the "naughty" label. To me that is unbearable - the thought of DS being punished or labelled for things that he cant help just kills me.

It was pretty hard for me as NO-ONE around would accept that there was anything out of the ordinary with DS and DH was pretty horrible to me about it accusing me of WANTING there to be a problem blah blah blah. I realise he was scared but it made it impossible to talk about and perhaps we didn't get the help for DS as quickly as we should of.

He is your perfect little boy and NOTHING has changed that. You will reach a point of acceptance where you are not so scared I promise you. In a years time you will be amazed at how it has just become part of you and him and your family. Me and DH even giggle to ourselves at DS's little ways now and I never ever thought I would be able to do that.

AlMummy's right - you do get to a point where you barely think about it. We had a horrible period but ds1 is now very happy and settled in the nicest special school in the world. The hassley times don't last forever!

re. Peppa Pig, ds1 used to roll in muddy puddles in the playground - I thought it was hilarious but his helper didn't really get it.

Have printed out a list of everything I put on here, and gave a copy to his nursery teacher for her to keep. Have been recommended a GP surgery which is closer, easy to get an appointment etc so will try and join and get ds there next week as it's half term.

ALMummy - DP didn't really want to see it either and has dismissed before when I have mentioned ASD, made him read the NAS website last night on the bhaviour page and when he had finished reading it he said 'that's ds'.

TClanger - I keep thinking oh maybe it's not ASD but I am think I am kidding myself there. If they see him and say he is fine then what?!!

Seuss - what is about peppa pig? Even I sit there chortling!

Kay

Mine's 13 now. Yes he's quirky and we have been through some rocky times and, no doubt, will go through some more but nothing is as bad as this yuck stage of discovering that your bundle isn't as you thought. Remember it is OK to grieve for what you haven't got. Also, I have the nicest 13 year old in the world who is pleasant, polite, empathetic and lovely. He also eats like a horse and is clomps about the house like one two .

Start from now and do lots of silly imaginative, over the top play and subvert as many routines as possible without causing too much distress otherwise you will be run by them.

Wish me luck - we are going on hols on Sunday and I am leaving it as a surprise for the kids. We are going to wake them up at 5 and tell them to get in the car as we are going swimming! How I am going to get packed, etc, without the 13 year old noticing I don't know.

Hi Kay,

Dunno if you remember but we met at Mile for Maude?

Just a quick thought,

Can I just say that if your ds is referred to the developmental paed at childrens centre he is a fabulously lovely and caring man who is extremely supportive xx

I hope you manage to get the help suggested on here.Best wishes to you and your lovely boy

Wrinkly xxx

Hi WT of course I remember!
Thanks for the support, I am going to do my bit on Tuesday and try and get a new GP and an appointment for a referral. Also going to pop to he library and order some of the books mentioned.

Sorry I haven't been on have had a hectic weekend.

flyingmum have a great time, can understand you wanting to keep it as a surprise the kids will be thriled!

tclanger am just off to check out your blog

hi kay i know just how you feel

my gorgeous little boy who has just turned 3 has just been diagnosed with hfa last week

to be honest with you it has been more a positive thing than a bad thing as now i know finally he will recieve help whre needed and as young he has every chance of learning before school

i have satb and cried and just held him worrying about what lies ahead but in honesty no one knows and best to saty strong for now to get through whats going on now

i still have a heaviness in my heart that i know will fade but everytime i look at my lovely little boy it changes nothing he is still him but he will now get help which will improve him which in my eyes there is no room for improvem,ent but i know that it will improve how he sees the world and that will be good for him

it has only been a week so im still riding the rollercoaster but when i hold him and his saying i wug you mama [he has speach problems too] i feel such unconditional love and will stay strong to ensure he gets the best of everything

and if i want to cry i will but not because im unhappy with him but because i love him so much regardless

now i know why he has acted in certain ways and feel an elemant of guilt where i have stressed at him but now i understand him i wont dwell on it but we seem to connect more now as i have a new understanding of him

chase up all the help you can and he will be just fine as he has a wonderful mum who has his best interests at heart and clearly loves him dearly and with that they can conquer anything and when we see how they cope it gives us our strentgh too

good luck

sorry for typos it was making me sad to write it and wasnt paying attention watching him cuddling his barney falling asleep

i'll help him evry step of the way because his my angel

I'm not about to say that you should be pleased, or it will all be easy. You're not. It won't be.

But I'd like to say that what we tend to see as "problems" can turn out to be fantastic possibilities, too, if children have the right structure and help along the way.

"Is obsessed with toy cars and Thomas the Tank (knows every character's name and colour), and buses."

Think how many future careers need that kind of mind that can memorise that detail, and get it right every time.

"Lines up objects (not just toys)and becomes unconsolable if they are moved even slightly out of line. Same with towers of blocks."

How many architects, artists, musicians, mechanics, designers and engineers have learned to use that tendency to do great things? Loads of them.

"He has a staple book, and a handful of dvds that he knows every word to. He got a new dvd recently and knew every word the third time he watched it."

Blimey, that's seriously impressive. How many of us struggle to remember our own names of a morning, let alone every line of something? Plenty of actors on the autistic spectrum, for example (if indeed that's what he is).

"Likes things to be 'whole' so a pizza is altogether like a 'window circle', they had a toy one at nursery today and ds was sobbing because someone removed a piece.Same reaction if a puzzle piece is missing."

Again, that kind of attention to detail is really "raw" right now, but it'll save some lives one day.

I know that right now all of this is probably no consolation at all, but it's a different way of thinking about things and seeing the future for him, and sometimes it helps to have that hope.

He has a different way of looking at the world, from what you write. Not broken, but different. And he has you. That's a brilliant start for him. I wish you both all the luck and happiness in the world in the years to come.

That is such a lovely and positive post Amber. Thank you. Has made me think about a few things. It can all seem so negative but it is not at all when you put it the way you have.

Told various family members about DS this weekend, all of them brought up the film Rainman to me. Give me strength.

"I know that right now all of this is probably no consolation at all, but it's a different way of thinking about things and seeing the future for him, and sometimes it helps to have that hope. "

Amber you are wrong it is a huge consolation thank you so much.

He is a lovely, lively funny and very bright little boy and everyone he meets comments on how lovely he is from people he passes in th street to shop ladies and bus drivers. Think that is why it felt like such a blow in a way to confront my concerns as I adore him. I suffer from depression and this had left a cloud so thanks for that positive post of all his little quirks.

ALmummy I told my friend and she was very supportive, which I was thankful for as was my mum. Aside from the film comment did you feel supported?

Actually they were. I suppose I should have put that instead of concentrating on the negative. MIL was fabulous, staunchly defensive and telling me how perfect he was and asked what she needed to know about it to be able to help him. SIL too.

Kay, someone once listened to DS talking to me on the bus, when he was 3 and as she got off she said to me "that boy will be Prime Minister one day" .

I too suffer from depression and I really found the first few months hard. I was in total denial, constantly looking for evidence of how he couldn't possibly have this blah blah blah.

Ambers post was totally lovely and positive and even though I have made my peace with DS having a diagnosis of ASD it gave me something else really great to think about and hold onto.

My sis was like your mil, it was hard but her heart was in the right place.

I get those kind of bus comments too they make me so proud.

This place has been so helpful for me, don't know what I'd do without everyone on mn!

I'm always hopeful that people will see the positive. I think the medical industry has made autism out to be something terrible because they've never realised what many of the adults are like. For some really weird reason they got so focused on the children (and the ones that are so badly affected that they cannot live independently), that they forgot about the rest of us and what we did with our lives. Have a look on YouTube for videos by Temple Grandin and see what she's like. As a child, really autistic. Now, one of the world's leading engineers. Read anything by Tony Attwood, who's got a really positive attitude too.

Because only the really badly behaved autistic children ever got a diagnosis, most of us just slipped past, unnoticed. We were just seen as ultra-quiet, shy, eccentric, loners, perhaps ones who wouldn't often do as they were told but were never really a big challenge. It never occurred to anyone that we were also on the spectrum, so we appear in no books, no films, no statistics. Almost all the statistics and 'facts' are done on the adults who were really really badly affected as children many years ago. No wonder most of the adults on the Spectrum wonder why the books say we apparently can't be expected to work or have families (!). It's because they're only done the research on the ones they had records for many years ago. No-one ever told us we couldn't do those things, so we did them. With varying degrees of success, of course, because we had to work out all the rules ourselves.

Whatever your children's abilities, whether they can achieve something really simple or something exceptional, they're all wonderful. Those with an ASD are life's specialists. Some are so locked in to their own minds or behave wildly because it hurts SO much to be always in a world that's too bright, too loud, too scratchy, too smelly, too scary, where people wave their arms about and make their faces do weird shapes for reasons no-one explains. Turn that 'volume' down for them by helping them to work in rooms they can think in, and by letting them grow and learn 'their way' rather than making them endure "your way". It'll really help.

I learned about body language from the Desmond Morris "Manwatching" books. I learned about manners from the books on manners. I learned about people by patiently watching them for year after year and practising and practising until I got it right. There's better guides now, of course. I'm still learning now, and I'm in my 40s. I still can't 'see' people, so I've learned skills that work around that. I ask lots of questions, I ask in advance for plans, agendas, ideas what we'll be doing. I use the internet to help me research where I'm going and what it looks like. I ask other people to work with me in difficult meetings, etc. I ask people in big meetings to wear name labels so I don't have to remember their names (well, why not?). I get them to check their rooms to make them aspie-friendly before I get there. Mostly people are great about it if they understand it in simple terms like "I can't 'see' people properly".

We just take a really long time to understand the weird social stuff everyone else takes for granted, but eventually for many of us it starts to work.

amber32002

it was really refreshing to hear what you have to say

my ds has HFA so would see the world the ay you do it gives me so much hope to know that he will also go into the world able to function and gives me more of an idea on what i can do to make things easier for him

luckily we found out just after his 3rd birthday so have a good head start to help him

but thank you for sharing what you have been through and going through you sound like your doing just great

Thank you for telling us about yourself Amber. TBH your posts are the most positive and helpful things that I have read about ASD. When it was first mentioned with regard to DS I was devastated, I cried every day probably for months. Looking back I know that the reason I thought it was so terrible was pure lack of knowledge. He is so funny and affectionate and clever and nothing has changed at all really, I just have a name for the way he does things now. At the time no matter how many books or internet information I read I just couldn't seem to "get" what it meant for DS to be on the spectrum - probably how he feels the majority of the time . Since his assessment though and talking to the people there and your posts it seems to have clicked in. I was explaining about it my MIL and SIL over the weekend and I sounded like an expert!

Thanks again for your posts.

PS I'm always happy to answer questions about me/to suggest stuff (it may not work, but it might). I'm also not worried about people saying "the wrong thing" to me, or ranting that they've had enough of their child being a certain way. We can be very annoying when small (and maybe from time to time when older too . ).

Amber your positivity shines through in every one of your posts, you have a great outlook and have really made me look at ds the way I always have done, as a quirky genius!

Me and DP have been watching ds this weekend and just enjoying him, at least now we can get him whatever help he may need.

Will keep you all posted.

amber, my son has a developmental delay due to a brain atrophy, I am constantly trying to find out more about ways to help him and therefore find myself reading about autism and ASD, I have learned a little about it but NOTHING has given me such a clear insight into what it is like to have autism as your post has today.

The things you describe are things that people like myself without autism just take for granted, thank you so much for helping me understand more about the condition.

Life is just wonderful, and I think that the more you have to work to achieve something the more you enjoy it. That is what I think about my DS when I see what he is achieving. DS is going to have such a fulfilling life, because he has had to work hard to get there. I see so many parents take so many little achievements for granted. I gave an example to my friend the other day, my son had to learn how to open a bag with one hand and take things out with the other hand, and there are countless other examples. And yet, when I see DS doing this simple task of opening a bag, I think to myself that DS will be able to do anything he wants to, with a little love and patience.

What an amazing, uplifting thread - thank you Amber for sharing and thank you everyone else for posting. The thread took me right back to last year when DS was diagnosed, and made me think back the journey from the difficult early days post-diagnosis, to 'surely he can be cured' to where we are now. Raising a child on the spectrum is not easy, but I think it's a hell of a lot more interesting. You learn so much about life and humanity, and about yourself as a parent. A year ago I used to cry thinking that we'll never be a 'normal' family and go on holidays, have birthday parties, etc - yes, shocking, isn't it, but it just shows how little an average person understands ASD until it hits home. If I could get a pound every time someone mentions bloody Rain Man I'd be able to afford one of those cool horse swings DS loves... Now we are very much a normal family, we are all a bit different because of DS's autism, but I like us this way.

KayS, wishing you lots of strength and positivity along the way