what to say to help

[katkin]

Hi , I would really appreciate some words of wisdom. I have just started to home visit a child who is gradually (!) going through the dx process. I am convinced he has ASD and, without starting a whole new argument, feel he has quite significant problems ( I am also trying to be discreet)

Question is: What would you as parents like someone to say or help you with?

I think mum needs help and information, but what to tell?. All the children I have previously worked with had a dx so this is new ground for me. Love kat

[Kazzen161]

If you are pretty sure it may be asd, you coudl say something along the lines of "I have worked with/have friends with children who have asd, and some of the things your son does remind me of them. You coudl have a look at this book/website and see if anything sounds like your son". Depends how she is likely to respond - some parents don't want to know, some do.

 

Karen

[ceecee]

This is a tricky one.The parents may well suspect themselves but I think you need to proceed with caution.Sorry cant be more help.I don't know the best way of going forward with this.

 

Hopefully others will have some ideas

[phasmid]

I suppose the approach you take depends on the parent and how you think they will react. You could try going to the NAS website and see if the information sheets they have for parents are what they need. Then again you could suggest they visit us...we'll be happy to talk to them!

[LizK]

I think you need to tread carefully. How much do the parents know or suspect? Has ASD been mentioned directly to them? I think you need to find out how much they know and how much they want to know at this stage maybe by some open ended questions. Personally I would have loved someone to talk (endlessly!) to about ASD during the diagnostic process and about how best to support and help my son but I know some parents would find that too overwhelming and upsetting

 

 

Lizx

[katkin]

Thanks all, ASD has been mentioned to the parents. At the moment all they want him to do is talk, then "everything will be ok" They have asked me what I think; I have to tow the PC line and said that the activities I would be doing with the child would be as if he has ASD and a language disorder but that I can't make dx.

 

I suppose it just worries me, I can't see this child in mainstream and of course mum should be thinking of a statement now, then there's DLA etc. I'm keeping my mouth shut as I don't think parents are ready I suppose to take on board a disabled child ( I don't mean that in any derogatory way) Child is a dear little thing and I would like to see him get the best. Parents have seen just the paed at the hosp but seem unsure if there will be a recall to a CP. I think there will be. I will ponder on and think. Thanks, Kat

[lindy-lou]

i personally think that honesty is the best policy,you can still be tactful while being honest,if they are to trust you they have to believe what you say and i dont think that skirting round the issue is going to be any help to them or their child in the long run,my consultant was very blunt in giving me indias diagnosis,no frills as i would put it,but i was told what i needed to know without her being condescending or brutal,and i appreciated that,as i knew where i stood and what was going to happen,i understand what your saying about the parents not being ready to take on a disabled child but in effect they are already doing the same as what they will be doing after dx,and there is no right time to be told something like that about your child,the sooner and more prepared for it they are the easier it will be for them to make the transition,i would wait til after xmas though,so it doesnt spoil it for them,this is just my opinion and others may disagree but i can only go on personal experience,i hope you find your way through it.

 

lynda x

[littlenemo]

If ASC has already been mentioned my tack is usually to gently draw the parent to express things about their child that fit the picture so that they come to terms with the issues to some extent - as they get more comfortable with the idea usually they start to accept without realising and begin to ask more specific questions themselves.

 

I used this tack on a friend, within a few weeks she was talking as if it was confirmed that her kids (3 of the 4) were AS. Unfortunately, I had never actually met the children and when diagnosis came for the first child it was autism which I (and others) had never mentioned (although we did use the ASC description) so it still came as a huge shock as her perception was that AS was manageable but autism was devastating.

Long, frank talks over that week and she has a handle on it now, I think.

 

pre-school though it is often more difficult for parents to see - my friend had 2 in school having serious problems so it was in her interest to be exploring long term possibilities, before problems of that nature arise it is more comfortable to see things as temporary glitches.

 

Having said that I have another friend who had difficulties pre-school and I sent her looking for help when he was 2 (before I knew anything about autism so I certainly hadn't suggested it) and she was told he was autistic although no formal diagnosis was ever made. The upshot was that he was fully supported very early and it turned out to be just some developmental delay (did look like autism though at the time) - he's now a typical bright, well-adjusted teenager, by KS2 he no longer needed the support.

 

I suppose what I'm saying is that even if it isn't an ASC there is no harm in sending parents looking for support for it if it looks like it might be - early intervention helps all children with SEN and what a relief it was for my friend to realise her child wasn't disabled as his behaviour improved. I look at it this way - if I hadn't pushed her to look for that help her son would probably still be struggling and possibly never have been able to make up the ground. She still thanks me effusively when we meet which 12 years on is getting a bit embarrassing

 

somewhat ironic that my 'perfect' toddler (Com's behaviour was perplexingly good for a 2/3 year old) was the one who turned out to be autistic

 

so difficult

 

Zemanski

Edited December 13, 2005 by littlenemo

[mum22boys]

I personally would be grateful of anyone being honest to me about my child. If someone came into my home and was there because there was some sort of problem I would rather hear the problem than not.

M is going through the diagnosis process and I know there is something wrong and actually feel 'grateful' when someone confirms i am not going mad.

Obviously only you can decide whether to say anything but I would certalinly like to hear what others think.

 

mum22boys

[katkin]

Not sure if I can say anything as I have to follow the corporate line. Which is to not say anything without a proper medical dx. I will continue to work with the child as though it is ASD as it will be the best way for him. Parents obviously are aware of concerns mainly because he has been referred and is receiving our service. Which child wouldn't get if he didn't "qualify" if you see what I mean. I spoke to a colleague today and we will continue with support strategies and liaise with health visitors and pre school. Interesting she said that at the moment they are thinking he will go to main stream etc and as time goes on and they see that child is not typically developing all the support will be in place for their realization. Not awfully sure if I agree because I am more of a "shoot from the hip and tell me straight person" but we shall see. Everyone's views are interesting is there anything that specifically helped anyone by what someone said or did? Perhaps not the best grammar in the world there but I have spent all day at an Early years and inclusion forward stategy conference thing and feel a bit Thanks Kat

[phasmid]

You say that ASD has been 'mentioned' to the parents. If you know who did this, could you not speak to them and find out what context they it mentioned in and, what their reaction to this was? My thought here is if you know the answers to these questions it might give you a way of bringing things up in a subtle way. Something along the lines of "I see you have seen 'xxxx', what did they have to say?" If the parents then mention ASD you have a legitimate 'way in' if you see what I mean. You could then suggest either a booklet or website (or whatever) for further information. There is a Depratment of Health book about ASD in pre-school children (I have it here but can't find it or remember the blooming title right now) but it is aimed at post, rather than pre, diagnosis. I am sure there must be something 'user friendly' on the NAS site.

 

HTH

[LizK]

Hi Katkin

 

I'm not exactly sure what your job is which makes it a bit difficult for me to answer proerly so apologies if this is irrelevent. We've only just got a diagnosis for our 4 yr old which was no surprise for us as I was worrying about ASD from after his first birthday andhave had to put up with HV and some other HCPs thinking we were overanxious overinformed parents so maybe slightly different to the parents you are working with

 

We have had input from two different professionals who couldn't give a diagnosis, the speech therapist and the Early Years Preschool teacher (which sounds like your job?). In some ways I found it frustrating that they wouldn't give an opinion on a diagnosis though I do realise it wasn't their job. The SALT inferred that my son had an ASD related speech problem but wouldn't go any further. The preschool teacher wasn't sure whether DS did have ASD or not, was a bit more vocal about it than the SALT and I found that not very helpful! I would have appreciated someone to discuss ASD with a bit more openly prior to diagnosis but I think there can be a danger in assuming that because many of us felt like that these parents might not. So I would tread carefully and try to ascertain how they know and how much they want to know, you might have to drip feed bits of info or they might be desperate for someone to discuss ASD with in depth

 

Things that did help was learning to understand my son and his behaviour. The Early Yrs teacher has been great with this and it helps me when things get tricky. Realising just how much of a visual learner he is. Watching how she played with DS and how she talked to him has been useful as we've been able to model that. Both her and the SALT gave me ideas for things to do at home to help his development and that was important for me to feel like I was doing something too. She goes into nursery too and has helped set up a programme for him there and is liasing with his school to ease his settling in there and set up the necessary support. This has all been started off pre-diagnosis.On a practical level I've found the More Than Words book really useful with regards to DSs language though the title page states it is for children with ASD. re DLA, I'd mention it. I never realised we could apply for it until someone mentioned it in passing and now we get middle rate for care which is great and means we can use it towards toys or activities that will benefit DS. We applied for it 6mths pre-diagnosis.

 

Not sure if that is much help

 

Lx

[Guest hallyscomet]

Hi Katkin,

 

As a parent I met many people that were in your shoes, none of them would give me a diagnosis, but I could see by their body language that something was wrong. I didnt realise that it was the system preventing them from reaching out to tell me what they thought. What happened to me was - I was suggested to go to a support group for parents that were going through similar problems with their child. I was having a conversation with another mother and she was describing my child to a T and I desperately said to her can you please tell me what your child has as nobody will tell me I had been on this diagnostic merry go round for 3 years and was almost going insane with worry and confusion, not even my husband could see it. He thought I was making mountains out of mole hills.

 

Well this other parent told me her child had Autism, well you could have picked me up off the floor, I had not idea, and then I went in denial and thought no this can't be so, it is really hard to accept.

 

Then the Paediatrician told me it was ADHD he knew it was Autism as well, but he avoided telling me, as my husband whom he was trying to explain why my son had to take Ritalin this doctor spent 40 minutes trying to talk to my husband and he flatly rejected the information and said he was leaving me anyway. So my sons doctor didn't give me the honest truth until much later, as he didnt think under the circumstances with my now useless ex husband, that I would cope with them telling me about Autism such a huge diagnosis and thing to take in, knowing my marriage was falling apart at the same time.

 

I say time is the essence, she will find out when she is ready. Be gentle with her and just be there is the best thing you can do and let her know if ever she needs to talk she can call you. You sound like a very sensible and caring person especially coming here and seeing first hand what it is like to receive a diagnosis.

 

Everyones ability to take in this diagnosis will depend on the sort of support they have in the background, and as in my case just because a person is married, it doesn't mean a thing in terms of love and support

 

I wish you all the best, this must be hard on you, but when she does find out the truth, please mention this website, she will get the support she needs here.

 

You learn who your real friends are when a diagnosis like this comes along, and believe me, my family were the worst offenders,

 

Good luck

 

REgards

Hailey

Edited December 14, 2005 by hallyscomet