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Kel

I don't want my son to wear a lable

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My sister & I argue over how I should deal with Toms' behaviour in public.

 

Like when we go to a play group or clinic appointment and Tom is banging a toy against the floor / wall and screaming, or when we have the mother of all tantrums in public where I end up on the floor rocking him & stopping him from hitting himself. My sister would happily walk around the room saying "He is autistic" but I'm not so sure.

 

I have the - This young person has autism ...... - cards from NAS & have used them, but I don't want Tom judged. Tom has had an ADOS assesment & scored 17, which definatley puts him on the spectrum, but we don't have an official Dx & I still feel like a fraud using the cards. I have also come across some really ignorant people...

 

I Quote "What like Rain Man?" "I've seen after Thomas & your son doesn't wear nappies!" "Don't let our son / daughter near that kid he is autistic!"

 

Ignorance like this makes me mad :crying:

 

How do the rest of you deal with public reaction as I don't know whether it's best to sign post Tom or have people believe I'm a dreadful Mum & he is a really naughty boy!!

 

Kel

 

xxx

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Really difficult one to advise on Kel, and it very much depends on how you perceive the situation you are in. I've got to say too, that over the years, I react less and less to other people's comments and looks. Think I must have skin as thick as a rhino now :lol: I've been in situations where I've felt it was appropriate to explain our child's dx, but looking back this was mainly due to my own feelings of fear that I was being judged as a mum. If your child is having a meltdown in a waiting room, I wouldn't necessarily feel you need to offer an explanation to those other people sat waiting. In some circumstances it may be appropriate, but that, IMO, isn't one of them. Very much a personal decision, and everyone will feel differently >:D<<'>

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I agree with BP it is such a personal decision... I remember the days when I was chasing my daughter round a department store and the security man intervened asking e to control her, I had to explain. And there was an occasion when I was in the post office with her she was screaming and I had to finish my transaction, a lady came over to me and very oudly told me that "People like you shouldn't have children" I was able to respond with "People like you don't deserve an opinion, my daughter is autistic and neither she or I can help how she is"

 

It's tough I must admit that I Have only once suffered from bigotted comments after explaining about the autism, I have never used the cards although i did take some to America with us when we went, but found that in the US people were so much more understanding about autism.

 

Don't feel you are copping out, we all cope as best we can and like BP I have developed thick skin and don't really notice peoples reactions any more... so maybe it just gets easier?

 

Hope you find what works for you...

 

Anne

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It's really difficult, isn't it :(

 

I vividly remember when my son was 7 and did a runner from an OT assessment, I ended up basically half lying on him on the ground just in the main the hospital entrance, at 7 months pregnant, saying desperately to people 'It's OK, he's autistic!'!! :o:o

 

Sorry, don't have any answers, but maybe the above will make you feel not so alone...

 

Bid >:D<<'>

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a lady came over to me and very oudly told me that "People like you shouldn't have children" I was able to respond with "People like you don't deserve an opinion, my daughter is autistic and neither she or I can help how she is"

 

Oh Anne that is classic! I wish I'd come out with it!! Most people are really OK when I say he has autism. Tom licked a womans arm in the super market about 2 months ago - she looked like she was going to kill me till I told her he was autistic. After that she was fine - she was all - don't worry dear. It's the really ignorant people I worry about. I want to scream "Read a ####### book for gods' sake!!!!!

 

Hope I develop thick skin somewhere along the line ...........

 

Kel

 

xxx

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The National Autistic Society has "I'm not naughty-I have Autism" T-Shirts for kids [i'd like one for myself but they don't do adults sizes...] But seriously, it's obvious to me when a kid's autistic/adhd etc. and if people are too ignorant to understand, they're not important. I'd prepare a whole range of replies to use when necessary - the more sarcastic the better. But Don't Apologize! You wouldn't need to for a physically disabled child...

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Hmm this is a toughie..my son is unfortunately a hyperactive version of a tazmanian devil with a bit of a tornado thrown in when we have to go out to the shops with him, and now he's 9 he's not exactly small!

 

When he was younger I used to get upset then like many others here developed a really thick skin...then an attitude !!

 

I had a real problem with M doing his disappearing act even when he was being watched he'd leg it so now we have a discreet little tag which fits onto his zipper.I got it from Ebay and its about an inch high and looks like a red stop sign.It says 'Person with Autism may not respond to verbal commands' which for our boy explains him perfectly! On the back there is also space for our mobile numbers just in case!!!!

 

Noone really looks at it unless he is maybe standing right next to them in a queue *or climbing over the counter to get at them* :whistle: and I see them give it a little glance usually followed by a smile for him and us,for us it works but I know some don't like their kids to wear things like this.

 

He wears it more for our peace of mind as I say 'just in case' :)

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This is always a personal and situational call, but that aside i would just offer the following observation...

 

Most people diagnosed with autism find the dx really enabling, because they are at last in a position where they can explain their 'difference' (when the need arises) very simply, often after years of struggling with self-esteem issues surrounding those very same 'differences'. While the dx is not something that needs to be bandied about willy nilly, neither is it (nor should it ever be) viewed as something which needs to be 'hidden away', because that will attach exactly the kind of negative conotations that those pre dx adults suffered internally because of their difference. Ben is, and always will be, autistic. While he doesn't need to wear a label to that effect, i hope he will never feel that doing so implies a negative, and hope too that he will always have the confidence to see that people who do judge him on the basis of the label rather than the whole really aren't worth his energy...

At 10 ben talks openly about his dx - the good and the bad aspects of it - if it comes up in conversation or if he feels it helps someone else to understand him. His best (NT) friend is fascinated by certain aspects of ben's dx, and has come to understand and accept him more fully because of that 'open' dialogue.

 

Hope that's helpful

 

L&P

 

BD :D

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Guest Lya of the Nox

the label was the best thing that happened to meggz

she understood herself better, finally so did we

as for the peeps like the others i have learned a drned good get outa my face expression and growl

which i need more now, cos she still behaves very babyish and looks bout 16

it is all part of getting used to it all

>:D<<'> >:D< >:D<<'> >:D<

 

xx

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Well in my experience, people have been quite understanding. I was on holiday once, and my girl had the mother of all meltdowns because she thought fireworks were going to go off. It took me everything in my body to try and restrain her and get her out of the enviroment. Some people stared and probably wondered what the heck was wrong, but I am not surprised at that as she was like a wild animal, but I did have some lovely people who came and offered to help, no explanation necassary as I think anyone could see her behaviour was not "normal"

 

One time we went to a family party, and my girl had a meltdown because of balloons. My sister-in-law, who we had not seen for years came and spoke to me about it afterwards and she didnt realise R had Autism, she said she thought she was just a spoilt bratt. After we had the conversation she thanked me for explaning it to her. The only thing I didn't like from the conversation was the pity, when she said oh what a shame, I said it's not a shame I am glad and proud of the way she is and I explained why, another person educated!!

 

Everyone is different with how they want to deal with the looks and stares. Me personally, I like to educate people and not just times of meltdown. Having Autism is nothing to be ashamed of, people will either deal with it or not, for some people whether you say they have Autism won't make a blind bit of difference and they will just go about their ignorant lives blind to it claiming it don't exist, and for others, some people are happy to learn about it.

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When my son was younger we had no idea he was autistic and when he threw his tantrums etc we were deeply embarrassed and when comments were made which were usually around how much bad parents we were then we used to believe them and so from this perspective you are one step ahead.

 

Another tip is that the folks complaining soon forget the incident but it remains with you for a long time with the result that you end more upset than them all because of their behaviour towards you which is not right.

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My son in a DIY store yesterday had a 'silly' autism moment..laughing and generally being silly. I got to the counter where by he was getting worse, the chap looked at me and I just said' sorry it's silly autism time'. He answered 'that's ok, we get lots of that' and smiled whilst my daughter took my son to the car and put him in it.

 

Being disabled myself I get called all sorts, cripple is the most common. I don't have a problem....THEY DO!

 

I just feel sorry them, sorry they are so narrowed minded and bigoted that it appears to rule their miserable lives.

 

Another incident. My daughter has a large birth mark on her face. It was very big when she was a baby and looked like an injury. Whilst in town one day a couple were suggesting to each other that she had been hit. I heard them. I turned tail and walked up to them and said very loudly 'NO SHE HAS NOT BEEN HIT IT'S A BIRTH MARK'

 

They were rather embarrassed that they were stuck for words and were spluttering, I was smug!

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I am so proud of Ellis and how he has developed into the quirky, sweet, fascinating character that he is, and I am somebody who if the need arises I will speak up and say, "Yes, Ellis has Autism and I am sooo proud of him!" It's part of who he is and I refuse to deny or hide that!

 

If letting one person know makes them sit up and ask questions, or go away and do a little research, then that's a big positive, imo!

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Kel - when I first read your post I was really really cross and almost about to write a very rude reply :oops: However, having read others' replies I can understand better the issue. The reason I was cross initially was that I felt you were rejecting the label in a way because you were embarrassed by it. I felt that you should be the one educating the people you fear would give a bad reaction and that by not doing so, and refusing to label, you were only contributing to the problem and to peoples' fears (which are often at the root of their reactions).

 

However, I think I can understand it more as a personal issue from the responses (and I think there is a fine line between reason and excuse).

 

For me, as Lya has said, the label has been the best thing to happen - it has helped me understand myself and it has given others who want to understand a tool with which to do so.

 

I think BD puts it very clearly:

While the dx is not something that needs to be bandied about willy nilly, neither is it (nor should it ever be) viewed as something which needs to be 'hidden away', because that will attach exactly the kind of negative conotations that those pre dx adults suffered internally because of their difference.

and I suppose there is a difference between having the label for yourself/your son and giving others the information. I guess the problem is that we're caught between a fear of how others will react and wanting to explain. I've had some positive reactions, a few negative reactions (or at least reactions where it has taken time for the person to come round to the idea and accept that I'm still exactly the same person they knew before), some weird reactions (I think these are possibly out of fear - a sort of - Oh, I should say something, help erm, blurrgghh!) and (the ones I find hardest actually) non-reactions - these should be easiest but I find myself very confused by them.

 

As for the actual, physical label on the person, I think it depends on the individual - if there's a safety issue then I think it's worth it. I wear an alert bracelet and have an alert card because it's easier if I'm having real difficulties and can't explain than people making erroneous judgements about me.

 

I really must read things properly. I read your topic title as "I don't want my son to wear a table" was mightly confused for a while :rolleyes:

Definitely go and see Mr. J! :lol:

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I agree with the other posters. It depends very much on the situation, but mostly I have a thick skin and ignore other people's reactions. However one incidence is very clear in my mind. DS was having the worst of meltdowns outside Waitrose (and it had been brewing some time). The only thing I could so was sit him down on the floor outside the shop and sort of hold him, not speaking (that works for us). I very soon had a crowd gathering around us which was making the situation worse and the people were quite intimiditating and tut-tutting. So, I calmly said "excuse me, but do you mind, my son is autistic and this is not helping!" Everyone turned, very embarassed, apologetic and walked away. It felt so good to be able to say that and totallly diffuse the situation and in their minds I had changed from a terrible, uncaring mother to one who was in control and it was THEY who were embarassed! So, yes, sometimes the label is useful.

 

sue

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Hi

 

It's one of those things that is a no-win situation:

 

- If you tell people that your child has an ASD, then you may be increasing someone's awareness, who otherwise knows nothing about ASDs. In addition, my belief is that whilst having an ASD is not an excuse for bad behaviour for example, it does give a reason for it. I personally feel that only when necessary, I tell people and if they choose not to be sympathetic and understanding, despite being advised that my child has a neurological disorder, etc, then that's their choice - they've well and truly shown their true colours and should be well ashamed of themselves.

 

- If you don't tell people, then how will they know? They WILL draw their own conclusions.

 

I'm proud of who and what my son is and I have no problem whatsoever with him having the label AS because that part of who he is and there's no getting away from it. The fact that he has that label, means that he gets the help and support that he needs to manage in mainstream school. To be frank, I find it difficult to understand why people don't want their kids labelled if they have an ASD - the pros, in my opinion, far outweigh the cons.

 

I've been on the receiving end of peoples negative attention/comments when out with my son many times. I've learnt to be hard-faced - my son is my priority and I've learnt to shut everyone else out. I do what I have to do to get through a situation, and blow what everyone else thinks (people in glass houses, eh?).

 

Best wishes

 

Caroline.

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I've no advice to add to the excellent posts here Kel, just to say that this has brought back memories for me. These days it is very rare for JP at 18 to lose it in public.

 

Of the many, many meltdowns from the past, one particularly stays in my mind. At the end of a 7 hour drive to Cornwall, we arrived early at our holiday cottage, when the owner was still cleaning it. JP (aged 10) had been fab all the way, but needed the loo, so we asked if he could go, then we would disappear for lunch & return later. So off he went to the bathroom. I'm afraid I've no towels, she said, they are still in the washer.

 

:o Oooooh Nooooooooo ..... hygiene obsession .... this was not good.

When he emerged, I tried to head him off at the pass, saying cheerfully, no towels JP, here have some hand gel instead!

You must be joking. He launched himself at this poor unsuspecting woman, thumped her & called her a stupid cow (luckily he was a tiny 10 yr old)

 

I bundled him out of the front door & asked S to hold the fort, then said to this woman I'd met 2 mins ago, terribly sorry, he's autistic & hungry! Oooh dont worry I get all sorts here, she said. So off we went to the cafe where he demolished a full english & felt much better. So we had a little talk. Mrs T didnt have a very good first impression of you, I said. So when we returned, he knocked on her door & said, I am sorry I called you a stupid cow, at which point she enveloped him in a big hug & they were best friends after that!

 

No real point to this ramble but when I think of it it always makes me :wub:

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Like many others what I do varies. There is part of me that feels annoyed that I have got to disclose my son's medical history and breach his confidentiality to Joe Bloggs because of their judgemental or short sighted attitutes but on the other hand I would rather he was labelled 'autistic' than something he is not like 'naughty' or 'odd' or whatever people think when they don't know. That's not to say he is not naughty either :lol: , the flip side is that I don't use his autism as an excuse for poor behaviour either.

 

If people are being ignorant I just develop a thick skin and let them get on with it. I am pretty open about it in other circumstances, after all that is who my son is :). Say like chatting to a mother at a playground who may be wondering why my son won't speak to her or engaging in a game that a younger child would play. Usually then get the whole he's not rainman/doesn't look autistic/must be mild questions and then feel like a walking autism public information service :rolleyes: but I find the information tends to be well received

 

Lx

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Thanks for all the really posative replies to this.

 

In case I did offend anyone ...... I am really proud of Tom & I am not embarassed to tell people he is autistic. When he sat under a table in a cafe rubbing his cheek against a womans fury boots, or when he licked someones arm in the supermarket!! Just saying I am sorry if he offended you - he is autistic - difuses the situation immediatley and made both women in question smile.

 

My issue is that my sister would walk around the entire room telling everyone there - before a situation might arrise - like it is a dirty secret. This makes me really angry. I just don't feel like I should apologise for Tom for who he is.

 

Hope that is a bit clearer

 

Kel

 

xxx

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My issue is that my sister would walk around the entire room telling everyone there - before a situation might arrise - like it is a dirty secret. This makes me really angry. I just don't feel like I should apologise for Tom for who he is.

 

Hope that is a bit clearer

 

Kel

 

xxx

 

Hi Kel :) -

 

It may be your sister thinks she's helping - getting it 'out of the way' to 'save you the embarrassment' later... Of course, she's missing two really important points (that there is nothing to be gotten out of the way and nothing to be embarrassed about) but it may be that she means well in a patronising sort of way. The road to hell and all that......

 

Another alternative is that she feels embarrassed by his behaviour when it's not explained and wants to reassure people (and herself) with those explanations. While that can be a bit hard for us, it is in fairness a part of the 'learning curve' that we ourselves have to travel and that some struggle with for many years. If the relationship is aunt/uncle rather than father/mother it can complicate things even further.

 

I think maybe the best place to start addressing this is to ask your sister what her motives are. If you find those answers reassuring, you may feel better about it and also find a way of explaining why you would do things differently. If you find the answers less than reassuring - i.e. that it has more to do with her embarrassment - then at least you've opened a dialogue to discuss those issues.

 

One of the hardest things, I guess is not feeling angry about it, because finding yourself a disabled child's aunt or uncle (or gran or grandad or brother or sister) doesn't 'train' you for the job in hand, and even if it did there are still so many different angles to disability that individual responses vary enormously. If you think about it, very few parents agree 100% on childcare, discipline and all of the other things that parenting involves, so it's perfectly natural that your sister might have a different 'take' on things from yourself.

 

Hope you and your sister can find some answers, and that at the very least the 'loud and proud' message expressed in most replies above was helpful and empowering...

 

Oh - final thought: Even though Tom is very young it's still (IMO) really important to try and pick your way through the 'autism/baby' minefield and start setting boundaries accordingly. The necessary learning curve, whether AS or NT is identical for the child, just that in the former case there are some added complications. The sooner you can start building bridges for the complicated bits, the easier it is :)

 

L&P

 

BD :D

 

Oh - PPS( :oops: ) I apologise for Ben (10) quite a lot, because it's part of his learning curve for me to show him the social 'norms' that help him communicate most effectively with others. When I do that, it's non-judgemental, 'light' and fully explained to Ben. At the moment we're working on 'goodbyes', because he can be very dismissive about them. While the people in our networks who take him out or visit know and accept that, it's a social nicety that will benefit him for wider interaction.

 

:)

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At the moment we're working on 'goodbyes', because he can be very dismissive about them. While the people in our networks who take him out or visit know and accept that, it's a social nicety that will benefit him for wider interaction.

 

:)

 

What a coincidence. I'm working on this with my Ben too!! He tends to ignore people when he doesn't see the necessity in his own agenda for acknowledgement. For instance, I have taken to leaving him at the bottom of the hill leading up to school, so he has a bit of independence getting himself there. His agenda is just to get up the hill and into the school grounds; on the way up kids are shouting greetings to him, kids who he will talk to once he's in the school grounds but not before!! So he's just ingnoring them on the walk up the hill and they are totally puzzled by this. I'm telling him constantly about this but he still hasn't got it! and the goodbyes, he just doesn't seem to see the point. Several times a day for a long long time this issue crops up. I hope he gets it eventually!

 

Flozza

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I think your sister is only trying to help and therefore any questions around this are uncessary and I fear could lead to some sort of friction.

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At the moment we're working on 'goodbyes', because he can be very dismissive about them. While the people in our networks who take him out or visit know and accept that, it's a social nicety that will benefit him for wider interaction.

 

:)

 

 

We've been working on 'hello' for ages DS (6) just didn't see the point. Now he's got to grips with it and more, goes around saying hello to everyone like a flippn' politician :lol: in that slightly over-exaggerated way they do when they've learnt something new! I think learning about stranger danger and not needing to say 'hello, what's your name' how old area you' to everyone he meets is the next steo but he's doing well :)

 

Lx

Edited by LizK

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:rolleyes: We're still working on the hello and goodbyes too... He's also never waved at anyone although we got a stiff armed little wiggle when he was trying to explain aloha means hello and goodbye which reduced me to tears *I'm such a wuss*

 

Fortunately where we live everyone knows us (not sure wether thats a good thing lol!!!) so they always greet him even though he's been ignoring them for years.Just a simple gesture such as that means a lot.. :thumbs:

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I'm still working on hellos and goodbyes and trying to teach it to myself isn't that easy because I'm not great at picking up on, or interpreting, the signs that I've got it right/wrong! :rolleyes: It's defiantly right to work on these at a young age :)

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What a coincidence. I'm working on this with my Ben too!! He tends to ignore people when he doesn't see the necessity in his own agenda for acknowledgement. For instance, I have taken to leaving him at the bottom of the hill leading up to school, so he has a bit of independence getting himself there. His agenda is just to get up the hill and into the school grounds; on the way up kids are shouting greetings to him, kids who he will talk to once he's in the school grounds but not before!! So he's just ingnoring them on the walk up the hill and they are totally puzzled by this. I'm telling him constantly about this but he still hasn't got it! and the goodbyes, he just doesn't seem to see the point. Several times a day for a long long time this issue crops up. I hope he gets it eventually!

 

Flozza

 

yes my son is the same -it hadnt struck me till reading this post -he wont acknowledge class mates outside school grounds -even on pavement outside school......also this was highlighted to me in half term that we went to the park and he saw a older lad there who is a volunter at like a youth group for disabled kids where my son goes in hols sometimes................he was very upset that hed seen him but refused to admit it was him..............this went on for a good 30 mins ...till i ended up saying yes it is him but you find that hard dont you because hes here in the park and hes not where you usually see him -and he fully agreed with that....so i went on to say well hes on a day off and hes come to the park .....but yes it is still the same person ect ect......took about 45 mins and then he agreed -now at one time i would have argued about this but now i relise this is what it is .......seeing someone in a different environment -bit like the homework thing /school.

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My sister & I argue over how I should deal with Toms' behaviour in public.

 

Like when we go to a play group or clinic appointment and Tom is banging a toy against the floor / wall and screaming, or when we have the mother of all tantrums in public where I end up on the floor rocking him & stopping him from hitting himself. My sister would happily walk around the room saying "He is autistic" but I'm not so sure.

 

I have the - This young person has autism ...... - cards from NAS & have used them, but I don't want Tom judged. Tom has had an ADOS assesment & scored 17, which definatley puts him on the spectrum, but we don't have an official Dx & I still feel like a fraud using the cards. I have also come across some really ignorant people...

 

I Quote "What like Rain Man?" "I've seen after Thomas & your son doesn't wear nappies!" "Don't let our son / daughter near that kid he is autistic!"

 

Ignorance like this makes me mad :crying:

 

How do the rest of you deal with public reaction as I don't know whether it's best to sign post Tom or have people believe I'm a dreadful Mum & he is a really naughty boy!!

 

Kel

 

xxx

He is going to have the pre judging forever,it comes as part of being different in some way,these ignorants do not see past the behaviors and the visuals.

What can do is either choose to educate them on his autism,they might carry on being ignorants,or they might listen and be better educated for it.

Or can choose that the ignorants are being a waste of effort and move on,they don't always deserve it.

Learn to numb against words-accept words are only words,and keep telling self they cant hurt unless let them.

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we have a lot of negative reactions from people in the public but ive also had some really nice ones too and been told im doing a gr8 job as a mum which is really nice wen yr sons in the throws of a major meltdown and people r staring and tutting saying u cant control that child and he just needs a good hiding(smack) and that makes me so mad..

but most of the time i just ignore everyone around me and deal with reece and my daughter who usually becomes very distressed wen reece is like this..

 

but i think it is totally up to the individuals on how much u want to tell people and how u feel best to deal with these situations..

 

love donnaxxxx

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