Calling all mum's of dcs with AS / HFA come and say Hi!

[SammyK]

Just thought would be nice to see how many of us there are and get to know each other a litle?

DS is 4, 5 in Oct, and as yet still not dx'd (waiting for EdPysch then will go to panel). He is very much an aspie, we have had verbal confirmation from Paediatrician that he is on the spectrum, and is very quirky and cute! He likes Doctor Who, Thomas, and WallE. He does not like toilets, loud noises or changes.

Anyone else about?

[streakybacon]

Hi Sammy

The social aspect of Home Ed is the easy bit! Being away from the stresses of school means that he's calmer generally and especially in the evenings when he has activities such as karate and swimming, so he copes with them better than he did before. Not being restricted to 9-3pm Mon-Fri means we can have HE friends over during the week and go to places of interest when it's quieter and less likely to cause anxieties. Socialising is a pleasure now rather than the chore it was before.

There are loads of social activities arranged through our local HE group too. To be honest, he has a better social life now than he ever did in school, simply because he's more able to cope so can take advantage of more opportunities.

[trace2]

mumslife lol i could have said more like your boy hes great at school very well behaved infact they have said are you sure he is AS? also yes loves rules but its his rules he is obsessed with dinosaurs too.

one thing people always say about my ds is hes over the top with things and very immature. and he feets things i mean what is near his feet he fiddles with it no matter what it is so annoying. plus fingers in his mouth

[trace2]

plus he dont sleep wakes about 3 times a nite he as melatonin for this but only help get him to sleep not sleep through

[Macforme]

My son has a diagnosis of autism and moderate learning difficulty (originally severe but he has done well)
a little hard to understand but on his own topics he will talk..and repeat.. and repeat... obsessed with TV production statistics and pencils.. Reads like a 7 yr old at 12, but has very scattered skills.. going to need supported living.
Very passive and anxious if anything isn't 'right'.

[sc13]

Hello! My DS (3.3) was dx-ed with ASD in April. He's very cute and affectionate; his speech is delayed but is improving. The other day he said 'Go away, child' to a kid in the playground who was trying to climb on his frame. Which means his speech is improving, but his social skills not so much...

[HelensMelons]

Just wanted to have a rant and didn't really want to start a thread.

Just collected dcs from summer scheme. The leader had to have a word with me, apparently Ds2 (asd) has been a bit of a phantom pooer. They saw him (I wont go into detail) this morning and have had to disinect all the toys, and lord knows what else - god I am so embarrassed.

I am not only embarrased but now wondering if it's all too stressful for him and there's a trip tomorrow - dunno what to do. Just when you think things are fairly settled. God I hate this at times.

Sorry.

[Nyrrem]

Hi HM,

Is this a one off or does his toileting fall apart when he gets stressed/tired etc?

[Nyrrem]

BTW I have ds; 5 in December awaiting Aspergers assessment when he's 7. Current written diagnosis of: social and communication difficulties, hypermobility and episodes of challenging behaviour.

[HelensMelons]

Hi Nyrrem and Hi to your Ds

I'm not sure, we have minor smearing at home. Sometimes it's when my routine has changed and I have had to go out.

He's probably tired and I had noticed that about 2 weeks ago it had got worse but today in the main hall of summer scheme there was poo under the pool table.

It never follows a pattern - or at least a pattern that I have picked up on - you've hit the nail on the head - today his toileting has fallen apart.

We also got a dx of adhd last week so I am just getting my head around meds, etc and moving forward. Uggggh!

I'm really not sure whether to send him tomorrow to the trip? He would really enjoy where they are all going but it's probably too noisy, unpredictable and stressful. God.

[Bugmum]

May I join in? DS1 is 4 (and a HALF as he constantly reminds me) and was diagnosed with ASD at 3. His paed says DS1 has one of the most wildly uneven profiles he's seen . Lots of issues, especially anxiety and social cluelessness, yet he does love his little brother and it is mutual - which is my daily miracle (when DS2 was born, DS1 was 2 and so distressed by the crying that he self-harmed). He can read and email but he can barely hold a pencil. His brother is NT, btw

[Bugmum]

Shells - you say your child has a diagnosis of AS, which you feel is more accurately HFA, yet he has speech delay? If he has speech delay, he does not have AS, which depends on typical (average or above-average) speech development. See Tony Attwood's book. And Simon Baron-Cohen confirmed this for me personally. My DS does not have AS, btw, but ASD

[Nyrrem]

HelensMelons - I don't know anything about ADHD or the meds, but wonder whether if you are finding the change stressful, so might he. What's the alternative to the trip? Is he going to be stressed by missing out? Sorry I have no good answers

[HelensMelons]

Anyone can join in!!

Yes, it could be the change - the alternative is that I stay off work with him at home - which he wouldn't mind.

Interestingly he did a picture that came home from summer scheme yesterday that we had a joke about because it was just light and dark brown paint smeared on a page - he couldn't have been any clearer really!! The message is now understood.

I think it is stressful for him, the hard thing is thinking about next year - what do we do?

It's the exclusion again, another avenue tried that I thought was working but wasn't. My other dc's can go.

Life feels like to can become very narrow at times.

Anyway thankyou, I do feel better about it, in a one step foward two back kind of way!

[HelensMelons]

That should say "Life feels like it can"

Thanks again.

[Nyrrem]

Glad you are feeling better. That picture is very interesting.

I think you are right life does feel very narrow sometimes, I'm going to use that phrase in RL as it sums up how I feel often.

[HelensMelons]

Thanks Nyrrem.

I am off to bed now and will decide in the morning if he is going or not on the trip (I expect not - but just in case he really, really wants to - highly unlikely but you never know!!)

How come you have to wait until your dc is 7 for his aspergers assessment? That must be stressful?

[Shells]

Sorry you're having a tough time Helensmelons. Sounds like you're doing the right thing though.

Bugmum - thanks for that. That was always my understanding too but my Paed used a criteria set by Gilberg which is different from the DSM one and says that speech delay is possible in AS. I have read Tony Attwood and he says AS children can have a speech delay too. It drives me a bit mad really as there's so much conflicting stuff out there.

I really think that DS doesn't show enough classic AS traits but at the moment we're just going to go with it and he'll get reassessed next year. Sigh.

[3cutedarlings]

Hi all,

Just spotted this

I have 3 DCs DD1age 6 (7 next mth) DD2 4 and DS 5mths

DD1 has AS she was dxd at 4. She is a wonderfully quirky little sole, that enjoys anything that can be ordered by a number, if is cant she will find a way to do so .

She is extremely clever, but struggles to apply herself as her social skills are serverly impaired.

The last 2 terms of school was a total nightmare, we are hoping for a better start in September. I personally think she has reached a point where she needs more one to one support so if things are no better i shall be applying for a statement for her AGAIN!!!.

[troutpout]

hello
Troutboy is 12 and has dx of Aspergers/HFA and Dyspraxia.
He likes:Reading(complete bookworm), Maps,computors, Lego, Trains (steam railways) , leaflets, science.

[HelensMelons]

Morning.

Didn't put him into summer scheme. I wish he could go but it's obviously too stressful. So we went shopping instead (therapeutic shopping iykwim!) M&S have a great children's section on dinosaur stuff and car books/sticker books atm - so DS2 was in his element with his two specialist subjects. Didn't buy anything though but may go back and pick up a couple of things for christmas (I know, I am sad....)

DS2 has a dx of hfa - he also has speech and language difficulties - there is definitely conflicting and sometimes confusing info out there!

DS2 goes to a specialist unit attached to mainstream (he is statemented) and I don't really think I realised how necessary the structure and small class is for him until today. He is going into P5 in September and had a much more settled year last year.

[bubblagirl]

hi ive only just seen this thread not been posting so much just lately

i have a ds who is simply adorable he is 4.3 and is HFA he has come such along way in last yr speech has improved still working on speech sounds

he really is so different and my best buddy

my little man is a whizz on the computer or his ds console , he loves maths his very good age 6 roughly with his maths skills
he likes writing

loves to run thats his thing lol

his generally a calm and loving little boy thanks to melatonin without the sleep his issues are too apparent and life is very different in deed

[Nyrrem]

HM - Glad your therapeutic shopping seemed to go well. In answer to your question of two days ago (sorry) our Paed seems to try not to diagnose before 7 if it can be avoided. I quote: "They change so much in the early years" We still get SALT, OT, Physio, Ed Psych, CAMHS etc, just without diagnosis. It can be a bit tricky with the wider family. We (me and DH) know how we think the diagnosis will go and have made our peace with it. However, it gives some of the grandparents inappropriate ideas about the future.

Bubbla - it's amazing what a difference a relatively simple thing like getting enough sleep makes to boys like ours!

[bubblagirl]

my son is like having 2 children uncontrollable, stroppy, sensitive to everything unsociable to the staying in room only degree, wont speak

to loving sociable [wanting to be involved and can with a certain amount of support] calm playful wants to do things, chatty and all this change is good health and good sleep

surprises me the hugeness in difference of behaviour that being ill or sleep deprived can cause them