Sort of sensitive

[LizK]

I've wondered for a while about joining the local ASD support groups as would be nice to meet parents in a similar situation to ourselves (DS 4yrs HFA). I think there are a couple of ASD groups locally and I rang the woman who runs one of them. She was very nice but freaked me out a bit as she was quite intense and full-on . She told me about a group fo preschoolers but I got the impression that it was attended by parents and children with lower functioning autism and more severe problems than my four yr old HFA. The lady didn't seem to appreciate the different nature of the difficulties we have with my son. I couldn't attend as it clashed with my days at work but I would have felt very awkward turning up with my relatively able chatty son and wondered if I was being insensitive to others. Would they think what on earth was I complaining about. I particularly don't subscribe to the belief that just because my son is higher functioning his problems or needs are any less important than those of a child with LFA but I do think that things could be an awful lot worse and am grateful for the child I have. We just started the Earlybird course and again we are a group with children with a whole mix of problems sem of whome have quite profound learning difficulties. Only my son and another will be attending mainstream school and one of the parents looked quite wistfully at me when I was talking about school and the things my son says. Again I felt quite awkward, guilty even.

 

Anyway I'm digressing. I wondered if these concerns were due to me overly worrying until I met a mother of a child with HFA at a clinic appointment. She went several times to the ASD group but said she felt very unwelcome and out of place because her son was higher functioning and was left with the impression that she didn't deserve to be there as her child's problems were severe. There is also an AS group which looks very informative and the lady who runs that seems very nice. However it seems to be more focused at older school aged children and I'm not sure how relevant it will be to us. The group sounds quite militant too!

 

Although all of our children have the same diagnosis ASD encompasses as whole diverse range of abilities, problems and needs. I feel at the moment that we don't fit in either because DS is too able or too young. There seems to be no niche for younger children with HFA in real life. Think that's why I use this place! I might give the local ASD group a go but still can't shake this worry that we really shouldn't be there

 

Have wondered about posting this as don't want to offend or upset anyone. Hope it comes out ok

 

Liz

[stressedmumto2]

I know how you feel. But these groups are set up to offer support to families. And it shouldn't matter what age your child is and the struggles you are experiencing as a family. You have every right to attend and see what it's like and to get information from it.

 

I think though you should give the group a try, you've got nothing to lose.

 

Good luck with it

 

<'>

[sylvm]

Liz - I think the thing with ASD is that it is a spectrum and a very wide ranging one at that. My daughter is older than your son (9) and has been placed on the edge of the spectrum. Her primary diagnosis is Tourettes, in fact I stopped coming on here for a while after the diagnosis, because I was aware that she was not anything like as severe as many and I felt I shouldn't be here. However, I have not found the quality of expertise or advice anywhere else so I am back.

 

We all have to find our own places where we can give and receive support in a way we are comfortable, I guess. Perhaps if you get a chance you should give the group with the younger children a go. Once you've been, you can walk away if you still feel unhappy. Alternatively, it won't be long before your son is at school. Is there a general special needs support group near where you live or alternatively could you travel a bit further to another one. Good luck - I know how important support is.

[Zemanski]

I have never attended the local group with Com even though I know we would be welcome there - I know a lot of the parents and some are good friends of mine - not so much because I feel there is a problem with being in a group with more profoundly affected children but because the things they do just aren't Com's thing (partly because he is AS and very able but also just because he is who he is). I have taken Com out of groups intended for HFA and AS kids because they didn't suit him too.

 

It is just very difficult with the individuality of the presentation of autism and the varied characters of our children to find a group that meets their needs whatever their age.

 

I actually find the local adult group most easy to manage in terms of support for me. I volunteer there and am a committee member. Com is not involved at all but it gives me access to other people with similar things they want to discuss and find support with.

 

Com actually seems to do better in small NT based groups - when he was little our local toy library was the best and most supportive.

 

Zemanski

[CarerQuie]

Why not try out both groups and see how you feel?My son is fairly high functioning but I slot into groups for autism and AS and get things from both.xx

[phasmid]

Have wondered about posting this as don't want to offend or upset anyone. Hope it comes out ok

 

Well I for one didn't find it offensive. You express yourself extremely well Liz- honest yes, offensive no.

 

Its a case os what's right for one is not always right for another. I think you'll just have to try them and see how it goes. If they're not right how about starting your own group - not always as daunting as it sounds. I'd be surprised if there aren't others like yourself who feel they don't quite 'fit in'.

 

I hope that you either get a pleasent surprise and one of the groups is right or you manage to do something about it and start one of your own and it succeeds. Good luck either way.

[linny]

Hi, I have often wanted to post concerns similar to this . My son is now 8 and we have always had a 'wait and see' diagnosis, but he has continued to make progress with all the things that he found difficult as a very young child.I found that support groups were not the answer for me as I never felt comfortable talking about my worries about my son, when other parents had greater concerns.And yes, the vast majority were great but there were one or two who made it clear that they thought that I should be greatful.At school, there are other kids on the spectrum and their parents do support each other. However, my son only has one friend ( a good and longlasting friend)and has not been invited to many parties so we havn't got to know many other families. I do feel that there is a need for a support group/ network for people in this position. My son is doing well at school and does slip under the radar. We do a gf/cf diet which has helped a lot in terms of his mood and general grumpiness.I can hear many of you shouting, 'well what are you worried about then?' He still has issues which mean that he has to try hard to cope with the NT world and I anticipate that he may come unstuck as a teenager. Anyway, it would be very, very nice to talk to someone with similar concerns. Lin

[Zemanski]

we found a woodcraft folk group which was parent run and never had more than 10 kids. Com was 6 when he joined and over the years he was there he and 5 of the others were diagnosed with various forms of SEN - 2 ADHD, 1 dyslexic, 1 other ASD and another dyspraxic.

For us this group was perfect for a while and I'm still in touch with other parents.

 

another great break for Com was a tae kwondo group that was mixed adults and children run by someone who is dyspraxic himself and rarely attended by more than 8 people.

 

keep looking, something may turn up that suits you down to the ground and it may not be quite what you expect!

 

Zemanski

[lancelot]

I know exactly what you mean! C is very able in some respects and at an NAS courses last year, like you, I felt at first as if we were just ungrateful parents of a nearly-normal child and there under false pretences. Then the group started to talk about social situations, sensory issues, and anxieties -- and C was, I'd say, the most 'disabled' child there in those terms.

 

Another awkwardness, I feel, is that C has the tact of a louse and will remark loudly whenever he notices other children acting or looking oddly. I suppose this is progress of a sort, as it suggests he's noticed some of the social norms -- but he can be quite offensive towards and about other autistic (or otherwise different) children. He's much better one-to-one with another child -- it's as if they become a real person to him then. Maybe you could get together with the parents of the other HFA child, rather than the whole group?

 

Possibly when school starts you'll feel like joining the older children's group? Education is one subject we can all discuss endlessly, after all.

 

It's also certainly true that the level of difficulty can vary widely as the child grows and has to tackle new experiences. C tends to agonise over things, possibly all the more because he is bright, aware, listens to radio reports, reads only the gloomy headlines in the papers, takes 'toxic' warnings on household cleaners very seriously -- the problems are different, but very real!

 

Must say, though, he's been a joy to have around this half term -- relaxed, cooperative, almost laid back! I've had to haul him off every morning to take the other two kids to a swimming lesson (he hates organised lessons , so he's left sitting with the parents), and one of the watching mothers commented on his 'mature attitude'. I wonder whether I should have mentioned his autism and reinforced a few positive notions of it for once?

 

Sorry, rambling, but your post really struck a chord.

All the best,

L xx

[pumpkinpie]

I am in several support groups which enables me to pick and choose what they have to offer. There is nothing to say you cant be involved with both, and use the bits you need. Its meant I could tap into funding and courses etc that would not have been available toi me otherwise. The best Thing I find is to just invite a friend or 2 over and put the world to rights.

Support groups are their for everyone regardless of their ability

[Kathryn]

Hi Liz,

 

I can really identify with what you say, as I have also really struggled to find out which, if any, local support network we would fit into!

 

I've joined our local support group anyway as it's good to know what's going on in the area, but I've resigned myself to never finding an exact match for our circumstances - there aren't many 16 year old high functioning autistic girls out there. Even on her college course she is the only girl with ASD, there are only four of them altogether, and many of the other students have disabilities which next to my daughter, appear very obvious and severe.

 

Recently we went to a college open evening at which the performing arts students were showing off their work (my daughter had helped to make a CD). We felt really embarrassed and almost apologetic to be sitting there with a child who must have appeared perfectly "normal" to other parents and we didn't feel able to talk to anybody. So I can understand that awkward feeling you describe.

 

Sometimes just one other person can be enough for mutual support - perhaps you can get together with the other parent who feels the same as you, Liz? Who knows, if there is a need for an HFA group, others may end up joining you.

 

K

[Bullet]

I don't feel ready to approach any of the groups in my area until Ds1 is a little older. I wish I had the confidence to approach them about myself. I find so many things to do with myself difficult. I hate clothes shopping, because there's too many clothes in one area and I can't concentrate, espceially if there's other customers. I have very little sense of hunger and only eat properly now to set an example to Ds1. Before DH would constantly have to remind me to eat. I don't like cleaning myself, or brushing my hair and hate buying sanitary products. I have to do it by rote, saying to myself "get dressed, have breakfast, get cleaned up" and I do it because society doesn't want me to whiff, not because I see it as right for myself

But I'm articulate and know what I have to do, so I can't be that badly affected in myself, I don't think. So I'd also feel like a fraud approaching any of the groups.

[Malika]

Hi to all <'>

 

With H when he was little being within a group of NT children was not a problems as far the groupe was not too big or he was allowed to do as he pleases, however now that he is 8 is social impairment has become more obvious and NT children of his age are more aware of him being somehow different and not really helpful for H going to school is already too much and he is less and less willing to "socialised" outside it.

 

I have try a theatre workshop and some tennis lesson within the school setting (after school hours) but nothing could last for long and people were not understanding his condition and able to help it seems now that H is just happy to stay home interacting with adults or his sister older friends from time to time.

 

The fact that our school his music or sport orientated does not offer H something like craft that he could do and be good at within a groupe and to send him to a grouipe where he will feel inadequ is not going to boost his confidence which he really needs.

 

As far as I know there are no As ASD groupe set up for children in my area the existing ones are for parents.

 

Malika.

[oracle]

Speaking as Mrs OTT herself who runs a support group in Sunderland I often worry that I can be a bit hard sell - well come guys this is me you are talking about here. We opened the group especially for parents who have children with AS and HFA and who felt isolated. There were groups up and running for children in special schools and who were low functioning (I hate that word)

 

We got a huge amount of calls from these parents so we realised that the group was needed. However we now have as many parents who have lower functioning parents and there is no way that we would ever turn anyone away.

 

We try to provide an ear and try to remember that parents as well as their children are individuals and are all different. We all have different ideas and approaches and that's fine because it adds to lifes colourful tapestry - but I know that sometimes my personality shines on through I hope that that's a good thing. Many parents just need to talk and I have become pretty good at listening - even if I have to use the sellotape to keep my mouth shut.

 

I think support groups are really horses for courses some will suit some parents while some will not.

 

Carole

[lil_me]

I can't complain about the Durham one at all, if it wasn't for them and this forum I probably wouldn't have got through the last 2 years. I was tol at first it was ran by a lady with a son with severe Autism so doubted if we'd be welcome but after meeting her at a conference it soon changed my mind.

 

Ours have a very open door approach, some very able and less able children, those with AS, HFA, Kanners, in fact just about every diagnosis and some without a diagnosis at all (my son wasn't diagnosed when we started as members but we were also welcomed with open arms). It is

 

Some people don't access every service available, we tend to goto some conferences and activities over the year but not all of them, but it is great knowing there is someone there if I need them.

[baddad]

Hi Liz -

 

While very different, I sort of know how you feel because when Ben was attending portage we were heavily outnumbered by parents of and kids with downs syndrome... Ben's behaviours were very different to those with downs in that he was extremely hyperactive and boisterous, and for quite a while we felt very unwelcome because the parents were nervous about Ben hurting their kids. A couple of friends who had children with ASD actually DID stop attending for precisely these reasons...

Ben and I persevered, and were - eventually - accepted within the group, and it was a real learning curve for the other parents too, because they came to realise that Ben's behaviours were not intentional or malicious, and that (i hope) the value judgements they were applying were very similar to those that they found so offensive when directed toward their own kids.

If the group you want to attend is for kids with AS/ASD, and your kid has AS/ASD there shouldn't be any barriers...

 

One thing I would say, though (and I'm sure there's no need but i'll say it any way), try to be sensitive to the feelings of those parents who do have children who aren't achieving the same milestones...

I'm sure every parent on this forum knows how it feels to stand at the school gates and listen to parents banging on about their kids successes, and the pain that results when we are forced to re-evaluate our own expectations. We (and they) should never feel guilty for celebrating our kids achievements, but i think we all have to think about how that MIGHT come across to others...

 

L&P

BD

Edited February 15, 2006 by baddad

[Nemesis]

Sometimes just one other person can be enough for mutual support - perhaps you can get together with the other parent who feels the same as you

I meet up regularly with another mum whose AS son attends the same grammar school as my DS. He is very bright and 'high functioning' and consequently I often find people dismissive of his issues. To have just one other person to talk to who knows exactly where I am coming from and for whom explanations are unnecessary has been a fantastic support for me.

Nemesis

Edited February 15, 2006 by Nemesis

[DaisyProudfoot]

Hi guys,

 

Must say Carole's group sounds great and if it hadn't been in the daytime Carole you know I'd have been there in a flash

 

Suggestion: Perhaps we need some kind of resources thread entitled LOCAL SUPPORT GROUPS for anyone who does attend a support group so they can post the details and then at least if we can get there we'll know at least one person there. It needn't have phone numbers or anything just a "interested? PM me" type thing

 

Daisy

[LizK]

Many many thanks to everyone for your understanding replies I'm going to find out some more details of what is available locally and have a go! Not least as I'v ehear don the grapvine that the Autistic Outreach service vcould be being dismantled and I think the local groups would have something to say about that. Will let you know how I get on

 

Liz x