I'm frustrated!!

Hi kittykat

Im sorry you are having such a hard time. I dont know if this will help you but I put together a information pack about my son when he was around this age. It held all the offical reports but also leaflets from places like the NAS which had a lot of helpfull info in for all the people who had dealings with my son, like schools and playgroups etc. I found just giving it to people smiling and saying "when you have a few minutes you might find this helpfull."

It stoped a lot of the eye rolling and made it seem as if it wasnt me trying to battle with people to make them understand and i could refer to it in the future.

It might not help you because I found most of the problems were to do with lack of understanding and them not knowing where to find, or have the time to find the info they needed. This is new to alot of them too.

sending more hugs to you.

Sam x

Thank you everyone for your words of wisdom and support and hugs!!

I was quite tentative about coming on here but I'm very glad I did, although at first I feel like I'm just going to be moaning and complaining a lot!! I'll try not to but it's kinda getting everything off my chest now I've found people who can understand.

If I'm honest I've just spent the best part of an hour in tears - and ironically it's not because of my son or anything that's happened with him but because of a lot of the people around me.

To cut a long story short I basically feel like I'm working my ass off doing the best I can, introducing new techniques to manage the more challenging problems and advising everyone and providing them with what they need to do when they have him and all I get is criticism and complaints, rolled eyes and, well, judged I suppose for not doing a good enough job. I already spend most of my time wondering am I doing a good enough job, am I trying hard enough, without getting it from all quarters as well, especially from his dad (we're not together) who has turned up for half a dozen appointments at best and does nothing to work on the issues our son has.

I'm so sorry for coming back on and complaining AGAIN!!  I'm just finding it all really hard to take at the moment.

Hi kittykat,

Just wanted to say you are not alone in how you feel. Its horrible when no one near you understands how you feel or what you are coping with. I hope you can feel the hug im sending to you and everyone else that needs one.

Sam

Hi

My 4 year old son was diagnosed on Wednesday so i think i have a pretty good idea of how you feel.  Its like your son is autistic -now go and get on with it! Talk about feeling inadequate.  After the first 24hrs i stopped crying and now i am trying to look forward.  Even coming on a website like this has been hard for me but now im here im glad i came. Tomorrow is another day and you have to do your best - that all you can do.  I can already see i will need lots of support but that i will need to filter the advice.  

I am going to try to educate myself so im not so in the dark about things and do my best to be positive when i can.

Hi Kittykat,

I'm sorry you're finding things difficult at the moment.  I'm sure other members will understand how you feel and hope that you get some support from this community.

You may also find it useful to contact our parent to parent helpline and speak to other parents who have been in similar situations to you:

www.autism.org/p2p

Alex-mod

hi kittycat , when our 4 year old was diagnosed we came up against a few of the same reactions ...he looks ok to me ..its because hes a twin ..he'll grow out of it ...and some of these were from professionals lol...being sad is part of the process as well as being angry and frustrated ... we try to laugh a lot and try not to get stressed out as much as we used to ..the best comment by far is when people say u and your husband need a night out to spend some time together ..yeah right and whos going to babysit because no one wants to .  its a long hard road (so i've been told ) but so has the first 4 years , and every day is unique and i wouldnt change a single thing ..so keep your chin up and im always here to talk to even if its for a good old moan xxx

Thank you - that's very helpful - I've heard that story from one of the professionals dealing with my son and I do keep it in my head - it's not what I expected or planned for but I do still have wonderful moments - this week he called me "mama" for the first time. I've waited three years for it and it was worth the wait!!

As much as I don't want anyone else to be having a hard time it's good to know I'm not alone on the battles I face (mostly with those nearest and dearest!). Maybe in time it'll be something I just switch off from!!

Hi KittyKat,

I'm really sorry that people are giving you such a hard time.  I'm sorry to say that they just don't understand how you feel, nobody can unless they have had a child diagnosed with a life long condition.  I just wanted to say that you have to have days when you feel really sad about the diagnosis, it's part of adjusting and accepting it. 

When my eldest son was diagnosed at three I was e-mailed a story describing the diagnosis as a holiday where you were expecting to go to Paris and had planned trips etc., whilst you were there, only to get off the plane and find you were in Amsterdam, another very nice place but not where you planned to go.  To this day that is how it feels for me.  Life is very different but it's great most of the time.

I always find the "pull yourself together" and "it could be worse" the hardest advice to take, because they have no idea what my life is like and how hard it can be just to keep going.

Now, I ignore advice which isn't helpful and when everything is getting too much I give myself a treat, even if it's just five minutes with a cup of tea and a chocolate biscuit, you have to value yourself otherwise you run out of energy and can't help your child. 

Hope this helps,

Take care.