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SN children

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Original poster

Do you tell people about your childs special needs?

30 replies

yodelayheehoo · 21/05/2011 21:29

My DD1 aged 8 has recently been diagnosed with Aspergers Syndrome. She goes to a mainstream primary school and is in year 3. We went to a birthday party today for one of her school friends and DD1 asked me to stay with her as it was a roller skating party and she is not very confident on skates.

DD1 is very quirky and has an obvious emotional development delay compared to her peers. Would you tell the parents of the party, or would you just let things happen without comment (as I did) such as DD1 having a meltdown because she couldn't sit next to a certain person, or didn't like the food?

I just don't know what to do for the best and hope that someone out there could give me some advice.

OP posts:

lisad123isasnuttyasaboxoffrogs · 21/05/2011 21:33

I think it depends on situation. I always think if it's going to help I do, if it isn't I don't. Most of our friends know about my girls anyway. Most of the mums at school doors dont

FollowMe · 21/05/2011 21:40

I do if I am leaving my ds at a party or something but prob wouldn't in the situation you mention.

EllenJaneisnotmyname · 21/05/2011 21:44

Always a hard one. My DS is very obviously autistic despite being high functioning and academically age appropriate, so i found it necessary to let people know. They have been very supportive in most cases, especially his peers once they had an autism awareness talk in Y1.

I think it's a harder call if it's not so obvious and they are older. Maybe let her close friends' parents know if you find them approachable?

asdx2 · 21/05/2011 21:45

I tell on a need to know basis with dd who is 8 and has autism. So her best friend's parents are aware but I haven't told other parents of children in her class. They might suspect something's going on because she has a TA but she doesn't stand out tbh and because she is small people assume she is one of the younger children so she gets away with being a young 8.
Dd wouldn't ever have a meltdown because I can read the signs and avert them and I explain away how little she eats by saying she is only a nibbler (again being small helps)
I think I must give off an air that makes people not question me because no one has ever questioned why I handle dd as I do or why she has a TA etc or maybe people just aren't nosy.
I think you have to do what you feel comfortable with but for me I believe that dd has a right to some privacy and so don't broadcast her difficulties.

5inthebed · 21/05/2011 21:46

I tell people on a need to know basis. I wigh up if they need to know, if they will see DS2 again and if knowing will benefit at all.

mumslife · 21/05/2011 22:02

This reply has been deleted

Message withdrawn at poster's request.

Original poster

yodelayheehoo · 21/05/2011 22:02

Thank you for all you replies. I think asdx2 has hit the nail on the head by saying that your child has the right to some privacy, this is what stops me from saying anything.

Although I do try to stand back and let the situation take it's natural course, I may have been able to prevent the meltdowns but I am not going to be there forever and I really want her to experience that things can't always go her way, but please do tell me if this is the wrong path to take. I am still learning.

OP posts:

mumslife · 21/05/2011 22:05

This reply has been deleted

Message withdrawn at poster's request.

asdx2 · 21/05/2011 22:23

I constantly give prompts and explanations to dd and we have a few little signals that I use that keep her on track so we have one for well done , another for waiting, and another for listening and looking and dd has one for help. I'm not sure if the parents notice I think I probably come over as over protective most likely. Then we work on scenarios in the comfort and privacy of home so she has been taught how to lose, how to politely refuse, how to wait her turn etc. Before parties etc I reinforce what she has learnt so that she knows what to do and if she's stuck she'll signal help.It seems to work for now at least.

dolfrog · 21/05/2011 22:39

Most of these issues will be life long issues which will not go away, so we need to help our children to self advocate for themselves, to be able to explain their difficulties to their close friends, teachers, peers, work colleagues and most important of all those who they may become emotionally involved with.

They will probably need the help of a carer for lifetime support, from being Mum and Dad to girl/ boy friend, husband/ wife. Although I may appear capable on this forum, i do need my partner to be my carer, due the nature of my Auditory Processing Disorder.

So the question really is how do we begin the build the care support our children need now and when they become adults, we have to start telling others about our disabilities but in varying degrees of indepth information so that others can provide the understanding and support we need. I do not think there are any easy answers to this thorny problem

MedusaIsHavingABadHairDay · 21/05/2011 22:46

I take a similar approach to asdx2... it's on a need to know basis:)
WIth my DS2 (Asd and MLD) it's obvious that he isn't typical within a few minutes due to other issues .. slurry speech odd gait that isn't quite 'right' , but I only say something IF we he is likely to be stressed or OTT in the face of a stranger.
Today for example was his bi-annual haircut. He looks like a giant dandylion clock due to having very long fluffy afro blonde hair. He is a good boy as we always go to the same walk in hairdressers but it's pot luck who he gets. Last time I had to introduce him to a new lady , and I quickly said 'he has autism and LDS so just please be patient with him.. oh and he will talk your ears off!' WHich he did
Today he got the same lady who gave him a massive smile and asked him how Shania Twain was (his biggest 12 yr long obsession!) She was so sweet to him and as a result he was relaxed and the haircut went smoothly.

On the other hand there are plenty of times when he can be his own sweet odd self without anyone needing to know..

LeninGrad · 21/05/2011 22:53

This reply has been deleted

Message withdrawn at poster's request.

Goblinchild · 21/05/2011 22:59

It is a very personal decision for anyone, and for the child at a later stage. Mine is 16 and I've always been open about his Asperger's. He is too now, and explains why some things need to happen or not happen so that he can cope in different situations.

Goblinchild · 21/05/2011 23:02

'They will probably need the help of a carer for lifetime support, from being Mum and Dad to girl/ boy friend, husband/ wife.'

Mine won't. he is his own advocate in many situations now, and I can see him living happily and independently in the future. I'd hate for anyone to feel that a dx denies this possibility.

lou33 · 21/05/2011 23:03

I dont have to as ds is physically disabled and in a wheelchair so it is somewhat obvious, but my friend has a son of 13 who has aspergers, and she tells people on a need to know basis

dolfrog · 21/05/2011 23:26

Goblinchild
our eldest two are 18 and 23, you may be more fortunate, I hope you wishes come true

Becaroooo · 22/05/2011 09:56

I am still awaiting dx for my ds1 but I guess it will be on a need to know basis.

PIL in deep denial so not sure how a dx will help with them.......

sickofsocalledexperts · 22/05/2011 10:17

I always tell everyone, because that way they can't tittle tattle and frankly it's pretty obvious with my autistic DS (particularly when he was at mainstream) that there is something very different about him. Mostly the people I've told have been very nice (to my face, anyway!). The main problem is that people don't really know what autism or aspergers are - so I try and give them a brief potted explanation, without boring the pants off them.The nicest ones are those who invited him round for playdates or to parties - I made it clear I would come too, no way I'd leave him alone at party or playdate, but when they first invited him they didn't know that I'd be staying. You really find out the nice people.

smileANDwave2000 · 22/05/2011 16:16

I totally agree with dolfrog its depends on the degree of assistance /understanding needed though, I think you explained the situation most succinctly but at same time I agree sometimes some privacy is needed and then added to that im feeling theres too much of a Taboo about worrying wether to mention or not and that in itself is what hinders peoples acceptance and understanding of our DCs .Of course at this stage (my DS is 11) theres no telling how far now hes finally got the help he needs how far he might come and I am so hopefull he will be able to lead an independant life one day, BUT I am a realist , in my sons case I think him living alone for instance is unlikely because his needs are too great (atm) its a case of no ones right and no ones wrong its individual and hard to tell for now, but we can all be forever optimistic yet realistic. The club I work for very few people tell us their dcs have SEN and we have to teach them , its all confidential of course, it takes us a while to work out what each childs needs are and how we can better help them ,so in this kind of situation it really would help all concerned to know rather than learning the hard way.

WhoKnowsWhereTheTimeGoes · 22/05/2011 17:50

This is really interesting, DS (7) is undergoing assessment, he shows some characteristics of Aspergers and Dyspraxia. I have tended to talk to friends who are not associated with his school, but not school mums, because I would rather his classmates didn't know at the moment (he manages pretty well, but is a bit quirky). However my guard has slipped a bit lately and I have been talking to some of the other school parents about it, it is interesting to hear everyone else's views on this thread. I am torn between not wanting him to be singled out as different and wanting people to understand why he is not quite like other children.

dolfrog · 22/05/2011 18:19

WhoKnowsWhereTheTimeGoes

"I am torn between not wanting him to be singled out as different and wanting people to understand why he is not quite like other children."

There is an issue here which i am not too sure ever gets discussed. all of my 3 sons have a clinical diagnosis of having Auditory Processing Disorder (APD) which can when they are attempting to talk they can appear asbergerish etc (long technical explanation for another thread may be)

I share the same APD disability that they have. And when I was at school back in the late 1950s 60s and 70s I was always aware that I was different from all the other kids but I had no really idea or explanation why from about the age of 5 years old. This really bothered me because I desperately wanted to be like all the other kids. I eventually put all my differences down to being left handed, and left it at that, until my own children began having problems at school. And it was not until my children were either close to leaving secondary school our eldest, starting secondary school our middle son, and just started primary school did I get a diagnosis of my own APD, by which time I was almost 50.

Had I known about my own APD, I could have explained their problems to all of the various professionals from day 1 and they could have got the help they needed and our friends and families would have know about the issues and know how to be supportive etc.

So our children are very aware that they are different from other children and they want to understand why, and have others understand the differences so that they can better integrate with their peers, and can become part of their peer group. This will also have a benefit of more children who do not have these issues growing up understanding that these differences can be lived with and accommodated, and increasing the general awareness we all need, so we are not viewed as strange or freaks

Original poster

yodelayheehoo · 22/05/2011 18:38

WhoKnowsWhereTheTimeGoes

"I am torn between not wanting him to be singled out as different and wanting people to understand why he is not quite like other children."

Such a great comment, this is how I feel about it too.

I should add to this that I am very happy that she was invited to the party in the first place. Invites for her are very few and far between (very different to DD2 who has one every couple of weeks).

OP posts:

Triggles · 22/05/2011 18:50

I have to agree with that comment as well. It really sums it up, doesn't it?

DS2 is going to a schoolmate's birthday party on Saturday, and I'm really nervous. His first time attending a birthday party, and it's a disco. The mum is really nice, we talked about his SNs, so she is aware and perfectly understanding that he might not be able to cope for the whole party. (30 kids and a disco - it might be a short outing for us - but you never know!) I'll be bringing along his ear defenders, in case he needs them. I worried about telling her, but just mentioned it while we were chatting after school. I do feel so edgy saying anything to people about it - it feels like I'm tattling on him or something. And sometimes people look at him a bit differently - sometimes in a good way, sometimes not.

Original poster

yodelayheehoo · 22/05/2011 20:52

Good luck with the party Triggles, the party DD1 went to was a roller disco type thing. She said the lights were putting her off concentrating on the skating, but we got there in the end. She did the last couple of laps by herself (proud Mum)!

OP posts:

Triggles · 22/05/2011 21:01

yodelayheehoo - glad she enjoyed it! I believe this is just a disco, thank goodness. No roller skating involved - DS2 falls over constantly and bangs his head all the time! So putting him on rollerskates is NOT a good idea!

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