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Autistic ds, how to help mother

(15 Posts)
howtohelp Mon 25-Apr-05 09:30:19

Hi all, I'm posting under a fake name just in case as I don't want person in question to know.

A person (P) close to me has a 5yr old ds1 with global devlopment delay and recently been diagnosed with mild autism. P was absolutely distraught by the autism, had come to terms with gdd. Said she felt suicidal - I'm certain she didn't mean it - just a shocked reaction. She seems very depressed to me, very quiet. I try to make her talk about her anxieties but it feels like I'm prodding and poking. Her ds2 is now 2 1/2 and not really talking so there are worries about him as well.

It had always seemed to me that she was sort of in denial about ds1 as I always thought there was something "different" about him, and the nursery he went to were always saying it was possible autism, but she refused to accept it.

My question is: how can I help her? I don't want to make her feel worse, I try to encourage her, saying that ds1's situation will improve, and he can have a happy life. But he is also having aggressive behaviour probs at school. As she seems in a kind of denial I don't know whether she should be forced to accept the reality, or whether I should continue with the "everything will ne alright, don't worry" approach.

Jayzmummy Mon 25-Apr-05 09:52:55

IMO I personally found it very difficult to accept my ds was a bit different to others....he was my baby and so very precious to me. How dare some one start to shatter my dreams by telling me that my son was going to be "different" all of his life.....and for a couple of years I buried my head and tried to ignore what was going on.

Thankfully I woke up and smelt the coffe and began to understand that if I didnt do something then I would be failing my child as a mother.

Its a really hard position that you have found yourself in.....I know because my god son is "showing all the signs" and his mother is exactly where I was at when my ds was the same age. She knows that things are not right and is avoiding facing the reality that eventually her son will need the extra support and interventions.

All I can do is support her and try to help as much as possible. Is there a local ASD support group in your area??

We are fotunate enough that our local group organise lots of family orientated social gatherings and my BF and godson have been with us a couple of times. Slowly she is starting to chat with other mums who have children the same age. She recognises that her son is very similar to the other children who have dx of Autism and is now begining to ask more questions.

Maybe you could find out if there are similar groups in your area and go along with her.

I think all you can do is "be there" and I commend you on being such a thoughtful friend. I wish my friends had been as supportive in my early days....they to told me not to worry....but deep inside I was scared stiff and so very frightened as to what the future would bring for my darling ds.

howtohelp Mon 25-Apr-05 10:15:29

Thank you so much Jayzmummy, it really helps me to have an insight into how my friend must be feeling, as I sometimes feel I am giving useless advice and can't really understand what she is going through.

I did think of looking into support groups etc. but I felt that if she hadn't accepted her ds's problems then she might get offended, but I think you're right, ds1 should be getting as much help, support and understanding as possible, and that means that she has to face the situation.

beccaboo Mon 25-Apr-05 11:12:33

The friends who helped me were the ones who listened and tried to understand and support us. I got upset with the ones who told me not to worry - because I felt my life was falling to pieces and 'don't worry' seemed to belittle the situation.

I would have appreciated practical help - an offer of babysitting, even for a couple of hours would have been great. Also offering to go with her and the children to the park or an activity if she finds those situations stressful.

Maybe you could try focussing on her child's strengths too - try to engage him in an activity and then talk to her how well he drew a picture/played a game etc. It's important to know that your child is not going to be rejected by other people imo.

Personally I don't think trying to force her to accept anything is going to help. Denial is a normal stage in coming to terms with a dx of autism - it follows quite a similar path to the grieving process.

dinosaur Mon 25-Apr-05 11:16:48

If you have time, try and find out a bit yourself about autism. When DS1 got his diagnosis of HFA when he was 3.5, I found that most of my friends (unless they had direct experience of autism themselves) knew nothing about it and were pretty dismissive ("Oh I'm sure he'll be fine").

And please try and include her and her son as much as you can - if you have children yourself, invite them to your kids' birthday parties etc. There was a heartbreaking thread on here a while back about someone whose best friend hadn't invited her son to a birthday party - that kidn of thing really hurts.

RnB Mon 25-Apr-05 11:20:39

Message withdrawn

coppertop Mon 25-Apr-05 11:31:41

I agree with all the other comments so far. She will need someone to talk to who won't brush aside any worries that she may have. Giving her a break by either babysitting for her or even just accompanying her on outings will also be a great help. Having someone around who knows even just the basics about autism can be a great relief too.

howtohelp Mon 25-Apr-05 11:56:19

Thank you everyone, this is all really helpful advice.

I think it's very easy for me to look at her and think of all the practical things she could be doing to help her ds, but I suppose I didn't really understand the level of sadness that she must be feeling.

She was very very upset by the dx, absolutely heartbroken, which I suppose must be a very normal reaction, and I just felt so inadequate in that anything I said to help sounded quite false.

I have already done quite a lot of research into autism as her ds is a late talker and I suspected that he might be autistic. I do try to engage him, read to him, play with him etc and it has honestly been very encouraging to see him become much more communicative and initiate games etc himself in recent months.

But school is still a problem as they often get reports of him hitting and kicking other chldren - the other day he bit another child. I think my friend just gets very depressed by these incidents, and feels that he is never going to settle in.

coppertop Mon 25-Apr-05 12:04:41

It would be helpful if the school could note down what was happening just before he hit/bit the other children. If they know the trigger then it's a lot easier to find ways to prevent it from happening. If it was because other children were somehow 'breaking the rules' (my ds1's usual trigger) they could help with social skills etc. If it was because the children were too close to him or making too much noise they could address that problem. Ds1 went through a period of hitting and pushing other children who weren't doing what they were supposed to be doing. His teacher, LSA and the pros who go into the school were able to help with this and now it's very rare for him to lash out. I can relate to how she feels though. Even though I knew ds1 couldn't really help what he was doing I still felt very guilty about the trouble he was causing.

howtohelp Mon 25-Apr-05 12:11:08

That's a very good idea coppertop, I will suggest that.

Jayzmummy Mon 25-Apr-05 12:17:41

this might help you understand a little

howtohelp Mon 25-Apr-05 12:32:49

Oh, Jayzmummy, that's really moving, and inspiring.

dinosaur Mon 25-Apr-05 12:56:10

I thought that, in honour of Jimjams and Davros who hate "Welcome to Holland" I ought to post a link to "Welcome to Beirut".

here

Jayzmummy Mon 25-Apr-05 13:20:00

I actually think "Welcome to Beirut" is a more acurate representation of what life and the emotions surrounding discovering your child has ASD is like......but thought it a bit harsh to begin with.

I know that ASD was first mentioned to me the "Holland" poem helped me understand my feelings during the initial early days..when I was feeling so overwhelmed and in a state of despair... I knew nothing about Autism and the only things I did know were distant recollections of the film Rainman!!!

7 years later having fought the battles and confusion surrounding ASD... "Beirut" is so much more applicable.

JakB Mon 25-Apr-05 20:12:17

Yes, Beirut definitely more applicable in many ways. I agree with everybody here- the worst thing people said was, 'don't worry, she'll catch up'. Friends who played it down upset me and friends who went OTT had me in tears all the time! The most supportive friends were the ones who just lent me their ear as I ranted and raved about it all without judging or commenting, if you know what I mean. And now, the most supportive friends are the ones who just ask how dd's doing and are genuinely interested in getting to know her...

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