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?

[pinkchampagne]

My DS chews things too, and he has issues with certain loud noises & smells. He will often put his fingers in his ears or his top over his nose!

[debs40]

Thanks for starting this thread. It is really helpful to see how many people are out there dealing with similar issues.

My son is 6. He is undergoing assessment for social and communication difficulties, possibly AS.

He has sensory issues relating to clothes, smells and tastes. He will frequently gag when we go to cafes, supermarkets where there is a smell he dislikes.

He only eats about 3 or 4 different meals. Fortunately, he east plenty of what he likes!

He has routine issues about clothes - will only wear three pairs of pants (all identical) one type of socks, a couple of t-shirts and one type of trousers. When we find somewthing he likes, we buy several! All good advice from here.

He constantly licks his hands and fingers and chews things.

He likes to play with children but is finding social communication more difficult as he gets older and the differences become more apparent between him and his peers. For example, he is easily led and will lash out if teased. This caused problems at the end of last term.

He hates change. Not looking forward to how he will handle a new class next term

He is affectionate and loving to me and his dad. He's not too sure about his little brother

[pinkchampagne]

Can I join in? I don't have a dx for DS yet but have his ADOS test a week today & I suspect he will be AS.

My DS will be 10 next month but is very immature compared to his peers & isn't at all independent. He appears lathargic & shows little enthusiasm for anything (never wants to go out etc) unless it is computer related. His latest obsession is Club Penguin & he carries his puffle around everywhere if he is not on the pc!
He still struggles to use a knife when eating & his handwriting is very poor (pretty much infant style.) He struggles to socialise, especially in large groups so parties & big social gatherings are a nightmare. He doesn't tend to get invited to many parties anymore. He wants to do what he wants to do if he does have a friend round, there is no give & take!

His language is ok, but still very immature & he will often come out with very random silly comments. He also is a very anxious child & has a big bee & wasp phobia which was so bad I couldn't get him out in the garden a few months back.

In school he struggles & his concentration is very poor. I dread getting the school report.

DS's difficulties were first noted when he was around 3 years old at nursery but we are still awaiting a dx. Dreading next Tuesday though, even though I have known in my heart of hearts for years, it is the having it all confirmed that I don't feel ready to cope with.

[NorksNappiesAndNowtElse]

Oh my mum and sister support us (due to DSis and DD being a little matching pair!) and agrees with AS. DH knows she isn't "the same" but doesn't seem to want to label her so won't read up on it.

My dad and PIL are the type to think of it as just pandering to a picky child, so tend not to mention it.

[NorksNappiesAndNowtElse]

Ello.

Tis Flamesparrow. DD is 6 and I am 100% certain she is not NT, she has many AS traits although is not as extreme as many iyswim. Comm Paed says AS is a language issue and therefore cannot be assessed until she is at least 7/8. He is a moron and I gave up taking her

Very pedantic, a few things she needs (her chair in the right position etc), loves HSM (all of them), Mickey Mouse and Care Bears. Her classmates have started picking on her for things like care bears

Very unsettled with changes, hates hand driers, certain texture clothes etc, and people she doesn't know well or who don't act how she expects.

Her differences with her peers are becoming more noticable. She has one friend in particular is fine with her outside of school, but steers clear of her at school. She is a very nice girl, but even I can see how DD would be embarrassing to her

[daisy5678]

Hi...

I have J, who is 7 and was dx'd ADHD at 5, and dx'd with autism and sensory processing difficulties at 6. He is academically bright but very delayed in terms of 'real-world' intelligence, psych describes him as being 'severely impaired functionally' and in terms of behaviour and social skills, is delayed/ severe, but he wants friends and social contact so that's a plus.

He's in mainstream school with a full-time 1:1 TA through a Statement which has taken years to perfect.

On the bad side, he's very violent, aggressive, angry, manipulative, rude etc. etc. at times. But on the plus side, he is very 'eccentric' and hilarious, often very affectionate, very creative, very caring and very very cute. I would do anything for him .

[Nyrrem]

How rude of you SIL! It's that kind of thing that makes me crazy. That, and at the other end of the spectrum, the enthusiasm to find a miracle cure. In the end I said "This is who he is, I'm trying to love, accept and respect for who he is." The relative in question almost went cross eyed with confusion. Perhaps if I hadn't been so angry I would have added some stuff about managing etc.....

[HelensMelons]

Nyrrem, I know what you mean about grandparents and their inappropriate ideas. I think my mum got some insight when I told her what happened at summer scheme but dp's family ..... hrrrumphh! I offered my sil one of the leaflets I was given about adhd because it gives some ideas on how to manage, etc and she said "no thanks, you keep it .." Well, swearwords come to mind.

My ds2 (asd)is a different child without sleep bubbla - he is much less co-operative and hard work. Sleep definitely makes a big difference.

[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

[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]

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

[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.

[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.

[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!!!.

[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.

[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?

[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]

That should say "Life feels like it can"

Thanks again.

[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!

[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

[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

[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

[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.

[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.

[Nyrrem]

Hi HM,

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