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hello...new to all this...my ds saw paed today...

49 replies

AeFondKiss · 24/09/2007 21:23

ds is 3.4 and he has been (sort of) seeing salt for the last year...

today we saw the consultant paediatrician for an hour and although he said he was not giving a diagnosis yet, he has said that our son has some asd traits... we are to go back in 6 months

dh is going to school with dh this week for a meeting with the ed psych, so they can see about him getting help at pre-school nursery...

I am 34, my dd is six, I am a sahm, I have been hanging about here for a while, I have cried all day.

I am so glad this board exists, I have found it very good as a lurker, I still feel very isolated and sad... but I hope you won't mind me joining you all and looking for advice

tia

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dustystar · 25/09/2007 19:19

Welcome to the SN board on mn AeFondKiss and Vintage I have a dd who is nearly 9 and ds who is 7 and has traits of AS/ASD and ADHD but no dx yet.

I can honestly say that this board has been a Godsend and I don't know what i would have done without it.

Niecie · 25/09/2007 19:24

Hi Flying Mum -

I'm in a similar position to you in that my DS has mild AS but it is the dyspraxia that causes all the problems. Getting to see the OT is a nightmare and it is the one thing that really has made him stand out at school and which makes him feel different from the other children. He is 7 by the way.

You will see you are not alone!

bubblagirl · 25/09/2007 19:38

hi Ae was just wandering what traits your ds has as i'm kind of in same situation at moment with 2.5 yr old and was just wandering if he was like your ds my ds also under salt

i'm really sorry your finding it to be distressing i to am finding it hard

tibni · 25/09/2007 21:00

welcome, I have 2 children, my ds is 6 (severe ASD) and an 8 yr old dd.

macwoozy · 26/09/2007 08:56

Hello and welcome to you both. I have a 7 year old ds with HFA.

caroline3 · 26/09/2007 11:13

Just wanted to say hi and welcome to this fantastic board. My DS has AS and ADD and ... a fantastic SOH, brilliant at giving his mummy and sister cuddles and loves the Simpsons and Dr Who!! Now getting much support at school which has made a big big difference.

magso · 26/09/2007 12:22

Hello AFK and vintage! Im newish to mn and have a lovely DS age 7 with asd traits/adhd/modLD, and felt very isolated till coming here! The nas has a local helpline which has been really imfomative and supportive. If I could go back to when Ds was 3 (and no DX just GDD) I wish I had pushed harder to put support in place for Ds to start nursery and school, so good luck with nursery!

AeFondKiss · 26/09/2007 17:14

thank you everyone , we saw the ed psych today, not sure what to think, I feel there might be a bit of a bad relationship between ed psych and the school.... who want my ds to have one to one, but ed psych seemed a bit removed, not really too fussed?

not sure my dh helped (he is very protective of ds and slightly defensive....)

bubblagirl,have you asked for a referral for your ds? not sure I can really help, I am not really good at all this yet, my ds traits atm are communication issues, speech problems....(not sure how much detail to go into), he will ignore people, eg the paed consultant said hello to ds when we went into the room, ds ignored him and went straight to the toys... after nearly an hour ds turned to him, walked over and climbed on his lap)... so he hasn't got good social skills

he has some tics, like sniffing (doesn't sniff objects just rapid sniffing through his nose), eye contact is an issue at nursery and with people like the consultant paed. (he makes good eye contact with his family, no problem)

he screams when asked to do something he doesn't want to do... not sure which things are asd traits, I am sure I haven't covered everything... paed said the word for ds is different... nursery cannot get him to follow instructions(we can at home mostly)... I could go on, he sleeps well, eats reasonably well, is loving and generous with hugs and kisses, can do some imaginery play, loves music, dancing, hates hand dryers and public loos, he is quite a shy boy, but he is friendly, his speech has a lot of jargon, so although he wants to speak to people, he can't do it most of the time.....

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deeeja · 26/09/2007 18:08

Hi, AeFondkiss, I am new to all of this too.
My ds 2 years 6 months, just got diagnosed with gdd and traits of autism.
I have cried on and off since I found out, and have felt quite lonely too, except for mn, where I have had one of my worst days!
You are coping very well, compared with me. I find myself watching ds like a hawk to see if his diagnosis is really correct.
My ds also has alot of sensory issues, and I have realised that he needs regular quiet time.
It is all a learning curve.
He doesn't like to be touched much, and likes all things shiny. He can make some fleeting eyecontact, but is not comfortable with looking anyone straight in the eye. He doesn't understand alot of what is said to him, and quite often seems deaf. He loves music, numbers, letters of the alphabet, and having a huge laugh! He is echolalic with some very ammusing consequences!
I have to go now, and start the bed-time routine.
Take care,x

bubblagirl · 26/09/2007 18:14

oh bless him he sounds adorable my ds is speech at the moment he is 2.5 not sure as yet if he has any traits they are keeping an eye on him but he doesn't open up to people like at therapists office because of the toys wouldn't do what she wanted but at my houiase with different therapist fantastic

done everything asked attempted to say words and she didn't seem as concerned but i guess time will tell he is still quite young but your ds sounds like normal child his age they are not going to take to everyone good luck though

flyingmum · 26/09/2007 18:17

Afondkiss. Your son sounds just like mine did at that age. Not too bad at home (although lots of spinning) but elsewhere - lots of tantrums and no eye contact. Mine has a fab imagination. Anyway it does get better! Mine needed loads of 1 to 1 at MS school (reception was a nightmare) but did do fairly well. We battled to get him into a independent special school (yes they do exist) for secondary where he is getting loads of OT and SALT as part of his education. this has had a huge impact. Anyway, he's lovely most of the time, cooks, is pleasant just is a bit quirky

spacegirl · 26/09/2007 19:14

HI both

I am fairly new and lurk everyday and get some top tips from people who know much more than me. I have three kids. DS2 is 3 1/2 not been dx yet but will prob be ASD. Have cried and felt lonely too. It is really overwhelming isn't it? I have a really amazing special needs health visitor who explains the process to everything and helps me fill in forms and stuff, and gives me a few practical things I can try each time she visits.

theheadgirl · 26/09/2007 19:50

Hi to everyone who's just recently started posting - there's a few of you it seems. I've been on MN about a year now, and have 3 daughters, DD3 has downs syndrome and ASD. I've found talking to others further along the road very helpful. Hope you all do too.

vintage73 · 26/09/2007 21:19

hi everyone, had a busy day at the hospital having my dd's calipers fitted. time to buy new shoes. haven't had mch chance to get on here therefore!! dd has acc and epilepsy, tho stillwaiting for full diagnosis. this means she has gross developmental delay tho is attempting to sit unaided this wk!! v lively and always laughing, tho no speech...yet!! enjoying reading everyone's comments on here.

ladygrinningsoul · 26/09/2007 22:35

AFK - your son sounds quite similar to mine (almost 4, HFA). We had the public toilets / hand dryers thing too but seem to have moved on from that now.

AeFondKiss · 26/09/2007 22:54

so many questions...

how have you all coped telling people, friends, family, total strangers?

how do I tell dd, who is 6, I just want her to know, but not make it complicated...

what was the first thing you found helpful?

vintage73, it sounds like you have had a bad day.

ladygrinning... when how did you get a dx?

what is a dx

so many abbreviations.

I worry my ds is going to get worse... I have a cousin who has autism, he is in his late teens, my aunty has been through hell with him, do I live from day to day? should I have some kind of plan?

should I be hassling health professionals left right and centre?

and why do I keep getting blank pages on the NAS website....

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TotalChaos · 26/09/2007 23:00

Our DS's sound similar, even down to the hand dryer hatred!!!. In terms of disclosure - you don't NEED to tell anyone (except health/educational professionals involved with you!) - bear in mind that when telling people, you will probably be having to explain what ASD is, never mind getting them to see things from your perspective if they do seem to get what the ASD is. So don't hurry - do what you feel most comfortable with.

I know what you mean with the uncertainty - at the moment it's hard to figure out what to plan - whether I should assume DS will more or less catch up language wise with some 1 to 1 support in mainstream, or whether there is likely to be serious long term communication problems. Think all we can do is hope for the best, and try and do what we can to make our kids happy.

vintage73 · 27/09/2007 11:38

afk, only now do i feel like i'm actually getting my head around everything, tho must admit i still find it all tough, the fact that dd has to have calipers, adapted buggy, standing frame, etc etc. i couldn't say the word 'disabled' for a long time but am now happy to discuss dd with anyone who asks coz i'm incredibly proud of her and how much she's achieved.

also i'd rather people did ask, rather than just stare or comment behind my back. i've had counselling with surestart 4 last 8 wks and it's still ongoing, and i've found that to be so helpful, just being able to say stuff out loud that i wouldn't dare say to anyone else. taught me to remain positive coz i want dd to be happy and determined thru her life. xx

ladygrinningsoul · 27/09/2007 13:14

AFK, dx = diagnosis. We got it because while the speech therapy referral was going on I asked our HV to refer us to a paed. I could see where the speech therapy was going but knew that only a paed can actually diagnose ASD.

Interestingly the paed seemed to think the prognosis was better than the SALT did, I think because DS' difficulties are pretty well all in the language and social communication areas. He was borderline in the stereotyped behaviour area.

theheadgirl · 27/09/2007 13:31

AFK - this is such a difficult time when you've just got a diagnosis (dx!) Your ds has a long time to make progress, and with a dx hopefully that will be the key to accessing all the services available for you. Don't look too far ahead into the future just now - maybe just think about what primary schools will be appropriate. I found that helped me. My DD3 is now in a lovely special school, and I feel they will support her til Y6, then I will have another crisis. But we will cope. And so will you. Think about all the options that are available - mainstream school with support, special schools, etc. And remember you know your boy best, nothing is written in stone, and you have the right to change your mind over what decision you make xx

theheadgirl · 27/09/2007 13:34

Ladygrinningsoul, your name frightens me. Just thought I'd share that

ladygrinningsoul · 27/09/2007 14:58

Headgirl, it's a David Bowie song - not many people here are old enough to remember it, I should think.

AeFondKiss · 27/09/2007 18:55

this is a good place to find stuff out...

vintage the surestart counselling sounds great...

spacegirl what form filling are you doing? it must be helpful having a good hv...

deeja, I am not sure I am coping well with it, Ikwym about watching your child.... surely our constant worrying cannot help them but perspective seems a distant thing!... because the paed hasn't formally diagnosed ds, just told us he thinks ds has "traits", I feel we are in limbo a bit, not sure if I should be looking for more help for ds, or just wait and see/

early years language support person is coming to see me at home next week, maybe she will give some useful advice?

I will try the local nas helpline and see what advice they give.... I am going away (guilty) for the weekend with my dd, but I will be back.

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AeFondKiss · 27/09/2007 18:57

thank you headgirl, I think what you say is so right and true, no point putting myself through more agony!

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