Here some suggested organisations that offer expert advice on SN.
I felt a little out of place today.(17 Posts)
I went to an ASD drop in meeting today & came away feeling very sad.
I wouldn't say ds2's asd is particularly severe, he has fantastic understanding but does have several conditions all going on at the same time.
Anyway, all the parents were discussing their children who all had their own very valid issues & problems, i know its not a competition. But while they were all discussing their childs obsession & extensive knowledge of certain subjects, abilities to read, count, read music etc I just could not relate to any of it.
Where do all the parents of ASD children who have a lower ability go for support or is it that an exclusively ASD group is not the right place for me & ds2.
It was lovely chatting but honestly I had nothing in common.
Does anyone feel the same?
No advice - I don't even feel comfortable going to baby/toddler groups and I have no SN children (but lurk around here occasionally as have SENCo expereince)...
Sorry it wasn't a good experience for you.
I had a bit of a funny experience the one time I went to the local ASD/Social Communication Disorder group, for slightly different reasons. And sometimes, shamefully, I must admit that I end up wishing DS had a gift with the academic work as a compensation for his struggle with language. I've not tried any RL groups since, I just stick with SN board on here tbh.
DH felt like this when we went to the "toy library stay and play" at the local SN school. He got talking to a woman who we know9ish0 who's DS has ASD. DH has always though that our DS2 isn't as severe as her DS (not a competition), but she starting saying her DS can read, write, talk well, toilet trained in a few days etc, and it freaked DH out. But what I had to remind him is that every child is different, and the child in question is 3 years older than our DC and has been getting help for 3 years more than our DS2.
Not sure if the point is coming across in what I'm saying, but anyway. Try not to let it get you down if one child can do so much more than your DS2. Try and focus on the things your DS2 can do, not what other dc can. Was it your first visit?
Thank you all for your comments, I'm not ususally so sensitive. I think we've had a crap couple of weeks & don't usually go to support groups but thought I'd go along for a bit of TLC.
But I left feeling the same as I did at the nt toddler group years ago.
Not saying our difficulties are any worse than theirs but I just couldn't relate to any of their dicussions.
You are right 5inthebed, I think I need to spend some "nice" time with ds2, just doing anything other than appnts. We've had a bit of a run on them lately & that hasn't helped either of us.
FWIW, the first few times me and DS2 went to an ASD support/toddler group thing, I felt out my depth as the other mothers seemed to be very friendly and comfortable with each other. It' always hard to get into a group you think is already established.
My heart goes to you, at least you have given it a go even if you feel it may not be for you. I can understand how as a mum /dad of SN kids we long for support , a chat, some advice from others in the same boat.
I on the other end have got the membership form for my local NAS branch for parents filled in , just can't bring myself to send it. They sent me a few emails to let me know of their program for the month. There was a play afternoon for young ASD kids and their families last saturday near me, i wanted to go but...didn't go. I 'm scared to see other ASD kids , to be comparing them to my ds , since my ds' ASD is mild apparently , i'm worried that we don't qualify to join in a way, and i'm also scared to be face to face with autism other than the version of which i'm used to with my ds ,if that makes sense?
"Where do all the parents of ASD children who have a lower ability go for support or is it that an exclusively ASD group is not the right place for me & ds2."
The local ASD support group doesn't really work for us (for the reasons you mentioned) so I don't go really. School (SLD) is a good place to meet others in our situation.
Mysonben - don't worry my experience today was that most of the parents at the ASD group were on the milder HFA/Aspergers end of the spectrum. Not to say they weren't having a bloody nightmare time but certainly they said their childs dx was mild.
IKWYM though ds2's CP is mild & I always feel a bit of a fraud within a CP group.
Thanks mrsturnip, DS2 is at MS school but I must admit us SN parents at the school tend to get together in the playground.
I just don't think the ASD group was the place for us, ds2 just isn't that able
I felt that my probs with ds2 are more sensory, OCD & communication type problems where theirs were more behavioural & social IYKWIM, DS2 just isn't at that friendship level at all & I sounded so negative when I couldn't come up with any talents.
Don't get me wrong, he is fantastic but just not that able
My ds may have mild ASD but i haven't seen any gift/able talent in him as of yet, he knows his numbers until 15 and knows his shapes and that's it. Not EINSTEIN just yet !!!
You may not have been the first parent to feel out of place and others may have gone once and not come back. Perhaps if you are able meet others with similar children to yours, e.g. at school, you could go together and make sure that the group is representative of a wider range of needs and issues. It's so hard feeling isolated in a group that is meant to be helping you become less isolated! Been there too many times as DS is always the most disabled.
Thank you all again, I don't feel so alone now
Maybe thats it, maybe we are better in an environment not exclusive to one type of sn or dx. I guess its easier then not to compare.
Anyway I've discovered a talent today... He can cut ALL the printer paper in to useless size chunks.
Now I've got to go back to work & explain why I haven't got the reports printed.
I'm going to sound like a naughty schoolgirl with poor homework excuses.
His fine motor skills are improving at last!
hmmm I've just set up a website aimed at providing info for those with severe autism and LD's. It's a bit basic at the moment, beginners advice on AAC but I want to include a good links section, to save people having to google endlessly.
It is apparently fairly easy to add a forum. I don't want to run a forum, but I wonder whether I could add a sort of noticeboard for people to post to try and meet up in real life. I think the issue of isolation is a big one, and like donkey derby I have a) sat through support groups where ds1 is by far the most affected and left wanting to kill myself and b) have just missed out on meeting people in similar situations by not going to the support group the same week.
Sounds like a good idea mrsturnip, but I understand your concerns about not wanting to run a forum, I guess you hav eto be clear from the outset of your remit & the extent of moderation, if any!
Thats a good point though, maybe on another day i may find more people in a similar situation.
Pre school sn toddler group was great a variety of ages, sn's & capabilities with no expectations or qualifying criteria before you could join.
Something like that locally would be good but for parents once they reach school age.
this is why i stopped going to the local ASD meets....
well that and a coffee and cry into my cup just didnt cut it....i was fine with DS dx. I was mor than fine in fact... it was practical stuff i needed not to be told what a monster id spawned! (which is what one mum told me!)
sod that thought i!
horses for courses. some folks find them helpful. others dont. it did put me in touch with a few peeps who thought along the same lines as me and that was useful i guess! the tea and sympathy i could live without tho!
I am sorry you had a bad experiance. I have 1 child with adhd and 1 with asd so sometime get confused at support meeting for one specific sn. I am very lucky I have found a generic support group through a local carers centre so people with dc's with all sn's which I find great.
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