Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Do you talk about your child's condition with other parents?

(9 Posts)
2boysnamedR Thu 29-Aug-13 08:27:18

Just wondering as before the holidays I was in a mess as ds had so many appointments. I had been made aware of his SPd which I had not noticed before ( more wrapped up in his more visible problems). My eldest has a friend with a dx of autisum so I asked her for some help on what I need to be doing to get him assessed / help. She brushed me off and told me he will be let down by the system at some point and I shouldn't bover. We have been very close ( round each other houses etc) and she often talks about her son dx / needs. Another one of our friends the next day asked her how she got her sons dx. Later my friend texted me and said she didn't like the other woman's attitude ( which consisted of about ten words 'how do you get ds dx?'.

I don't know I guess it's all been too much for my friend and I totally get that. Just not sure what to say to her when we go back. I am tempted to tell her ds is fine now so we avoid the whole subject totally. I guess she feels like she needs to vent to me about her son problems but isn't able to offer support. Which again I get. Should I say my sons ok ( he is so not and I would love her support as she understands / has been there and is one of my closer friends) or should I just change the subject very quickly? I don't want to upset her

claw2 Thu 29-Aug-13 09:15:15

Maybe your friend has had a bad experience or doesn't want to scare you with hers and put you off.

My experience wasn't a pleasant one and I don't tell people in RL as it can be pretty unbelievable to someone who hasn't experienced it and I sound like a loon!

SummerRain Thu 29-Aug-13 09:21:40

Could there be an element of her not wishing to be characterised as the 'autism mom'? Maybe she feels like lately all people want to talk to her about is autism and she wants to discuss normal things?

Or maybe she's just a bit selfish and wants to offload on you but has no interest in supporting you in return. Tbh its hard to tell from your op

FrussoHathor Thu 29-Aug-13 09:59:58

I do. But not when dd needs my attention, or I have things to stress about (appointments/forms/problems at school). And sometimes I don't have the mental capacity to talk about it. Like my brain has gone numb, and I can't deal with what I'm going through let alone what anyone else is going through.

At times (for me) it feels like the normal school mums want to see things in their children that aren't there (I'm not saying you are) because they see dd getting extra help and provision. That was hard fought for (but they don't see that bit with the endless forms and meetings and assessments).

Or the see a behaviour and want to relate, eg my dd does that. I know they just want me to feel better, or not alone. But there's a tiny part of my brain screaming you have no idea. (There is so much they don't see, and I don't let them see)

Sometimes it feels like a judgement like how did you get DC diagnosed there nothing wrong with their behaviour.

Ask her at a different time, say when the dcs have been back at school/nursery (sorry don't know how old the dcs are) a few weeks. Holidays well mine anyway are full of just trying to survive each day and there's a lot you won't see, and she won't talk about
If she's only recently (in the past year) got the diagnosis, it may be too early for her to be able to talk about it objectively and separate her experiences from yours. And it can often be a hard fight to get a DX. And even when you know it is coming, it can be hard to deal with.

Don't say your son is okay just to drop the subject. Try to approach the question in a different way or at a different time. Eg, I'm worried about ds doing xxx, do you think I should ask for a referral to x or y?
But bear in mind that sometimes she may not have the capacity to think about anyone else.

Sorry. That was a bit of a ramble, and not sure if it helps.

claw2 Thu 29-Aug-13 10:13:38

Also if you are worried and have concerns why not talk to your GP and ask for a referral?

zzzzz Thu 29-Aug-13 10:28:43

Mostly on here not in RL.

She doesn't sound like she's able to help you on this one. Is there anyone else who could?

2boysnamedR Thu 29-Aug-13 11:48:01

Her son is nine and had a dx at two so its not denial ( I don't think). I hope she doesn't feel she is the mum of the sn kid but I guess I hadn't thought of that. My son had his dx over the summer so I was all over place last time I saw her as I wanted a dx. I guess it's also true that she has nothing positive to say to me. Her son is very lacking in social skills but very very good at academics and there gets very little help.

2boysnamedR Thu 29-Aug-13 11:48:46

Therefore gets very little help I mean

claw2 Thu 29-Aug-13 18:37:18

She sounds a bit deflated by the whole system, with the comments she has made. I think most of us have been there at some point. I certainly have, I have questioned what is the point of a dx, if your child doesn't get the support.

Maybe she just feels a little jaded by the whole experience and not the person to be giving advice. However, you still have Mumsnet and the advice and support here is brilliant.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now