i need support to support them. I dont know everything.

[chubbymomie2012]

I am new to this board, been on mumsnet a couple of yeras but have never posted here.

My DS2 (3rd of 4 dc's) is 26 months. He is undergoing investigations for ASD. Its looking like he defo is. We are paying for private SALT as the wait her is 6-9 months. I want to give him the best start we can. I also want him treated the same as the other 4 children. I dont want him being treated like he has something wrong with him.

the older two kids 13 and 10 seem to be coming round to this and are back to treating him like an annoying wee brother but my friends and parents keepmgiving him that pitying look. it makes me so cross.

plus im a nurse in ICU. i know how to do that whith my eyes closed but i know damn all about asd so why do the professionals i see always assume i know what to do or how to deal with this?

i think its just hit me how lifechanging this is going to be. God i hate self pity and i know only too well that ASD is nothing compared to what some parents are going through but today at least im so cross for my wee man that this is happening to him. he is gorgeous affectionate and a lovely wee character. Life is bloody difficult enough with out this shit too.

i think i just need to realise this isnt the end of the world, its just i am the strong level headed sensible one in this family and today i dont feel like that i hust want to hug him all day and make it go away.

sorry self pitying is so not good but am grateful for a place to rant
Thanks MNSN. xx

i forgot to add that he used eat and drink anythng and was a pleasure to feed, however 2 days ago he just stopped eating and yesterday he started this moaning noise. i cant pin it to any behaviour or event it just seems nonsensical and random.

i have had him checked over by GP who cant see any medical reason for the moaning. so its a new behaviour.

Hi, and welcome to the board. Sorry you are having to go through this but you have come to the right place for support.

First of all, be kind to yourself, you cant be expected to jnow everything about Asd, there are some good books around. Try "10 things every child wishes you knew about autism"

Second, keep coming on here and asking specific questions about anything, there is usually someone around who can help.

I have to get Dd3 moving towards school now and go to work but will check back later.

Good luck

Ineedmorepatience thank you for your kind words x

He may be enjoying the sound of the moaning? If he's got some sensory issues (very common in ASD) it might be that he is seeking the sensory feedback from the moaning. I don't have any advice how to stop it, though, except by distraction or trying to get him to make some more acceptable sounds, singing?

Has your SALT recommended the Hanen book, More than Words?

Sorry, got to do school run.

Ellenjane.. Yes she did I got it this week and and beginning to plough my way through it. Hopefully it will help.

Glad you have it. I'm already liking the sound of your SALT!

As Justa says, you'll soon become an expert on your own DC and on how ASD affects them. I found the sensory section in More than Words gave me a good insight into a lot of DS's behaviours. But it's hard to tell what's down to ASD and what's just their personality.

That's the bit we are struggling with. How can u tell what's ASD and what's normal tantrums etc.

DX has been DX over 4 years ago and I still don't know what's asd and what's normal tantrums :)
You will just learn to go with the flow as you get over the initial omg I don't know how to do this phase.
I became obsessed about what every professional said to me about how things should be done and I began to feel very inadequate as I didn't want to get things wrong, but at the end of the day I relaxed when I took bits of advice from them,lots of advice from this board and followed my gut but most of all I relaxed...now I'm a lot more confident about how I parent DS and he's thriving with a much more relaxed mum.

Hi Chubby. I'll repeat to you the most annoying thing that someone said to me when I was at your stage.

'ASD is not the worst thing'.

Because, when you get through this quite frankly shit stage, you'll agree.

However, right now, what you have is a huge information void in which you are probably putting your worst fears, and the unknown is very frightening.

Step by step you'll fill that information void and form a plan that makes things much better and is full of hope. However, I'm sorry to say that the only person that can do this is you. Services are just not there like they pretend to be, but you are more than qualified to do this and the good news is that you can be more effective yourself than any outside agency.

I am mostly relaxed because I feel eased to have all the kids and I'm lucky to be in a position where I'm taking a career break to work with DS. I just have bad days like today were I am consumed with worry for him. For example the whole regression thing terrifies me. My wee boy is living affectionate and friendly I don't want him to loose that.

I am reading as much as I can about it and trying not to be too worried about the future. It's just a matter of getting through the tough days.

Forget anything and everything you were taught about ASD at university. Right now. The stuff they say during nursing, medical and teaching courses re autism is mainly (often entirely) offensive, incorrect, unscientific nonsense.

For example: no empathy, no emotions, no liking for people.
All lies . Atypical: yes, absent: no.

Techniques to manage ASD meltdowns come in quite handy for reducing age appropriate ordinary tantrums too.

(have been studying and working in various jobs and courses within NHS, education and social care for 22 years now, so thought i had ASD covered... but have learned much more useful stuff on here)

Oh yes how true Mareeya.....I could thump anyone who gives me that chestnut.

Chubby, welcome to the board. I've found lots of wisdom here.
For me, the advice I would give myself at the time of diagnosis would be this:
that you feel there is so much to learn and so many therapy approaches to implement, otherwise you will be failing your DC.

STOP. The most important thing you can do for them is to love them, as you would any child. If you never do a day's speech therapy or sensory integration or social skills training, but continue to give them a safe, secure, loving attachment to you, you will have achieved loads. Doing the work comes second.

That sounds trite, I know, but I think I kinda forgot it for a while and took on my DS as a project and set of goals rather than putting him as my DS first.

I am in the medically trade too and felt I had to fix DS to show that I was good at my job.
Then I stopped and started being his mum and let others do that stuff with him.

The second thing I would say is to choose what the priority for therapy is first, and focus on that. It is very hard to run a family, a home and simultaneously do several different therapies. Pick one, do it for a while, review your targets and priorities and repeat.

Hope all that makes sense .... am very tired.