Mums of autistic/AS kids

[periselene]

Hi, I'm a mum of two boys, one of whom is autistic. I'm new here and looking for people with similar concerns to chat with.

T. was clearly autistic from the very beginning. We were already asking each other what was up with him when he was 6 weeks old. He was diagnosed by 2. e finally spoke his first word at 3yrs 7mths and was using full sentances by 4. He's almost 6 now and he could talk the hind leg off a donkey. He MOSTLY makes sense;)

He's a lovely boy. There have been dark days, but mostly we're in a good place now.

Anyone else with a similar story?

xxPeri

wow that was early! is T the oldest or youngest?

Hi Periselene, my ds2 is Autistic, he also ahs mild cp & learning difficulties. Because he was dx'd with Global delay from a very early age many of his ASD traits were put down to developmental delay.

He is 5 now & has a good vocabulary but struggles to communicate particularly in any social setting, he also has v poor memory & problems with word recall.

He is of course gorgeous!
I hope you get lots of support on here.

click here

that's me that is Haven't updated for a while, but it gives you info on my two.

sorry, yes, and welcome!!!

It sounds a bit similar. I had concerns from 3 months and he said his first words at 3 years and 6 months. He has made a lot of progress since he was diagnosed at 3 years and 6 months (started speaking just after DX) and we are cautiously optimistic now compared to feeling quite desolate last year. I'd be thrilled he he carries on mirroring with yours and donkeys could be under threat...

Us adults on the autistic spectrum have always wondered about the need for expressions like "talk the hind legs off a donkey", y'know. There's me reading this thread and all of a sudden I get this mental picture of a donkey with no hind legs .

But what I really mean to say is "Welcome!"

There's lovely people here, and lots of very handy advice. Ask anything.

As for your son, it sounds like some of our younger friends on the autistic spectrum, who can also manage to talk nonstop for hours. Personally, I didn't like talking to anyone until I was in my 20s, but I've made up for it since...

Hi and welcome!
my eldest son is on the spectrum, he is 4 1/2 and was diagnosed when he was 2 and a bit. He has very little language and lots of sensory processing issues, but we are muddling along, in our own chaotic way! This is a lovely board full of nice people so post away
x

Hi, I have a ds with ASD (7) and a dd (9). DS was dx'd just prior to 3 and still has very limited language.

Welcome to the boards

lol @ misscutandstick! Come back, come back! I have no social graces to speak of, so I hadn't even noticed

T. is the eldest by 23 months. My younger boy seems not to be on the spectrum, though he does tend to copy lots of T's more 'interesting' and 'hilarious' behaviour, so I do sometimes feel I've got two

Currently they have this conversation a lot:
T: You're a cheesecake!
H. No, you're a cheesecake!
(repeat)

cyberseraphim, I've felt the desolation + I can only say hang in there ... which you will anyway. I'm sure it's good to have this place to let of steam in sometimes + I look forward to making the most of it too!

Amber, I'm not mad on chatting either, but I force myself The internet's much easier!

Thanks everyone for the welcome - it means a lot.

welcome! I've got one DS (4.5) with moderate language delay and social communication difficulties. Supposedly probably not on the spectrum but I'm not holding my breath . Lol at "mostly makes sense" - I know that feeling well.

Hecate, thank you for the link - it's a wonderful, tragic, brilliant and heroic blog and I'm honoured to have it shared with me.

TC, it sounds like you 'know', and if you know then you know and you're (sadly) probably right. I know the feeling well - you can still hope to be wrong, and I shall cross my fingers for you. It's only a lebel of course. He's still your lovely boy, whatever else they call him.

xxPeri

thanks for the support

Hello, periselene! I has one son who was dx'd last year with autism; he also has ADHD and sensory processing 'issues'. He's v bright and can be v funny, but also bizarre at times. The dx helped make him make sense to me; I hope that TC and others like her struggling for an accurate dx get where they need to be soon.
Your stuff is brilliant, Hecate. Really related to the post about loving the boys but not the autism.

Hi, welcome! I have a ds who is 8 and has ASD - know what you mean about 'dark days' but things going okay at the moment!

Hi GMS!
Does your boy have any meds for his ADHD? We're currently wondering if T. has it too (he's unbelievably wild and bouncy and has terrible trouble concentrating), and have looked into Ritalin, but all the info is terrifying ... no messing.

Anyone else know anything about it, or have any opinions on it?

xxPeri

Hi Seuss, and thanks for the welcome!

dd (10 1/2) is ASD, she was first dx GDD, then ASD at 3 1/2-ish. She needs routine very much still, and is very disorganised, she still takes things totally literally, so finds no friends in peer group, her friends are 2/3/4 years younger than her. Ds1 is NT. Ds2 has been dx GDD (at 5 months) and I was told when he was 4yrs 1 month that he had autistic spectrum TENDENCIES. I will be pushing for a full dx when he goes to big school next week, as they're not going to know what to do with him! Ds2 said mama for the first time at 3yrs1month, said mum for the first time at 3yrs8months. He now (4yrs 9months) talks in sentences, BUT his nickname in our family is Yoda. Last week, he put his hands on my mum to cool her down, and he said " I gonna take the hotness off you"??!! but ALL his talking is like this. SALT only gave him 6 sessions, from 4 to 4 1/2, each a month apart, as not enough in our area (1 NT, 1 SEN SALT). Full time school in a week...I personally feel that as he hides whenever someone he doesn't know/ knows but isn't talking to that day tries to communicate with him, that it's going to be a fun time at school!

Hi Peri, yeah, J has been on atomoxetine (Straterra) for a while. Tried the ritalin-type thing first, Equasym, but the few benefits didn't outweigh the weight loss. He was also horrible when it wore off - more horrible than without meds at all!

The new stuff is better and is 24 hour coverage. Not as much weight loss, though being monitored very carefully as he's got problems with his blood. It's not a stimulant like Ritalin etc., more like an anti-depressant drug used for ADHD treatment.

He's much calmer and less hyper. Doesn;t stop the meltdowns, but thats the autism. The psychiatrist says the meds take the edge off the ADHD but not the autism, but she says she's had good results with this Straterra with those who have a dual dx of ADHD and ASD.

What do CAMHS say about T?

Hi Peri

Ds only got his dx today - he has AS, ADHD and anxeity. We didn't realise there was a problem until he started school but in the last 3 years it has become more and more obvious that he is on the autistic spectrum. He's another who can talk a hind leg off a donkey

He tried equasym xl last year to help with his ADHD but it actually made him worse as it heightened his anxiety. He has been on atomoxetine since march and that suits him much better.

Hi Peri and welcome, I have DS1 who's just turned 3, has very limited language and is probably HFA, and DS2 who has just turned 1 and is already doing his best to talk! I've gleaned most of my most useful tips from people on this board, it's been more useful than reading any book on ASD, and very supportive too.
The things which I've realised have made the biggest difference to ds1 so far are supplementing with fish oils (I use Eye Q) and removing fruit squash from his diet. i read somewhere that fish oil is particularly effective for adhd - you probably know this already but just in case you didn't, it may be worth a try..