DD is getting more and more stares and it's makes me furious!!

[summerholshell]

Hi everyone

Well the older DD who's 5 gets, the more staring and pointing she gets and it's really getting me down. Fortunately DD doesn't notice, but I'm getting increasingly irratated and just generally sad for her.

I know some of the problem is being highlighted with the holidays, but I think age has got something to do with it. She can't really hide behind just being a child who'll 'grow out of it' anymore. For example, she still can't ride a bike and there are kids everywhere you go at the minute who are riding around on their bikes with no stabilisers. DD still can't even ride her bike with stabilisers Whenever we hire bikes, we tend to put her in a buggy/trailer, which she loves, but the amount of stares we get is unbelievable! We even got a few laughs yesterday and I did my first "What are you staring at?!"

When we went out today she kept running up to other children and saying things like "i'm having a wonderful day!!it's the best day ever!! Are you my friend?" Of course the other DC's are going to look at her a little gone out because they're just children and I can't blame them, but sometimes their parents will usher them away from DD as if they need rescuing! It's completely and utterly heartbreaking.

She just can't seem to develop her social skills. We do a lot of work with her at home to try and help her and so are school, but it doesn't seem to be working.

How can she develop her social and communication skills if that initial greeting of DD's always puts the other children off?......once she's off into a conversation she's actually ok and can hold her own(ish) but she very rarely gets to that point. School always say she's happy to play on her own, but I think she's just used to it now. She's got such an amazing imagination that she's able to go into her own little fantasy world, but it's just not healthy and it's not helping her develop these essential skills.

How else can I help her?

I wish I didn't care so much about what others think, but I just can't seem to switch it off. I think it's mainly because I know that her issues are going to become more obvious, the older she gets and I don't feel emotionally strong enough for her. I'm already being treated for anxiety and depression.

Any experiences or advice would be really appreciated

Thanks!

There are no easy answers to this.
I think we all go through this at fairly regular intervals.
Most of the time I dont think about it and then we will be in a situation where DS2 looks so out of place that it will set me off worrying about him for weeks.

What diagnosis/issue does your DD have?
Is she being stared at because she looks too old to be in a buggy?

Dont be about 'what you staring at'. Why shouldnt you say it? If someone is staring there is nothing wrong with telling them!

Thanks you

She doesn't have a diagnosis. For most of her first year at school, she was doing really well and we started to think she was just behind, but would catch up. However the last couple of months, it's becoming more obvious that it's not that simple. School have being doing social stories with her, but if i'm being honest, i'm not sure how effective they really are.

We took her to see a SALT who discharged her after one appointment, which we were really shocked about. That was about a year and a half ago.

Yes, she was being stared at because she was obviously too old to go in a buggy. To make matters worse, she's very tall for her age. She could pass for a 7 year old and so it just makes her stand out even more. It was mainly teenagers who were sniggering. I even got the odd puzzled, almost cross look. I felt like they were judging me for putting her in it, as if she didn't really need to go in a buggy.

I think you should push for a ref to the local Child Development Team for an assessment.

You may not get a diagnosis but they should be assessing how delayed she is. Does she have a statement at school? Any input from anywhere else?

My DS is big for his age too. Its hard isnt it?

Lets face it, if someone cant work out that a child that big, in a buggy, has SN, they are too stupid to worry about!

I wish I could help more but its something we have to deal with the best we can. I deal with it by being gobby and common

if the initial greeting is a particular problem, could you role play a more acceptable "script" with her at home. Otherwise I agree with MrsDeVere about going back to the professionals to look into what's happening, as you feel that the differences are getting worse with age.

TBH if she is placid and well behaved and getting on OK workwise, you can see why school may not want to look for problems iyswim.If she has trouble with motor skills (you say she can't pedal a bike with stabilisers) then some sort of OT assessment may be useful (though I appreciate not easy to access on NHS)

She doesn't have a statement no, but like I say, she wasn't considered to be SN at school atall until the last couple of months, where her peers are moving forward and forming friendships and DD isn't.

We always had our concerns, but various 'professionals' told us that we were worrying for nothing. Bloody hell, i'm can't tell you how angry I am for not following my own instincts!!

It is very common summer. I went though it myself with DS who was dx at 7.
From the other side - I am a portage worker (work as part of the child development team) and there is a lot of 'watch and wait' with developmental delay.
It is very frustrating. Lots of children do catch up in time and when they are little it is very hard to tell who will and who will not.

When they get to primary and their peers suddenly start moving forward and their physical and cognitive development starts averaging out - our kids suddenly start sticking out.
Hence a rash of dx and assessment at year 1/2.

I am not making excuses for professionals. No one should tell you for definate 'everything is fine' if your child is delayed. They should tell you that 'we dont know yet'.
You certainly should NOT be angry at yourself.

My DS got three dx in the space of a month. He went from 'he is fine' and not needing statement (stupid school) to ASD, Lds and Auditory Processing Disorder and statemented/moved to special school almost overnight!

I am not saying that will be the case for your DD. BUT pushing for a statement might be a way of moving on with developmental assessments.
DS's dx came out of a pead asking to see him because he had been asked to write a report for the statement.

It does get harder as they get older.

TBH i don't know many 5yo nt children who can ride a bike. Dd1 is 8 and can not ride a bike, dd2 is 6 and can not ride either. We get more stares now with dd2 as she often makes noises (humms) and flaps and then her older sister thinks its fun to copy. It is hard but you do grow a thick skin and i am getting pretty good at giving nt children a evil look when they are pointing/talking/whispering at dd2 .

I wonder also, if perhaps you're sensitive? Parents tend to call their children away because they don't want you to feel uncomfortable.

It sounds like you've had quite a shock over the last few months.

For me (DD1 is 6, goes to special school, but no helpful dx), in a sense it is hard as she's growing, but in another sense it is a relief, because I find that I don't have to explain so much now. Her behaviour tells the people what they need to know.

The thing I find the hardest is when I suddenly see her along NT children of her age. Because she goes to special school, has younger siblings, and she finds group things difficult, we don't often go to social events. On the rare occasion that we do, the gap between her and children who were born at the same time is startling

I can understand this too, also have a dd aged 5 nearly six who is the size of an average 8 yr old(I know this as her bone age is monitered as part of her condition). The paed just wrote in her report that DD's size affects how people react to her. It is hard.

I can also relate to the feeling down after trips out due to dd's attempts to play with other kids (her speech is very very unclear so they never understand her but even if they did it would be what most two year olds would start up with iyswim. The only thing that has really helped me is just picking the times I can face it and if not, going toSN groups and activities instead or going with friends whose DC know DD well and play with her. She often finds a two year old boy who will just run around with her, which works ok but I know, it is very hard to watch.

Agreeabout getting more input if you can, my DD has social skills groups at school and am about to take her privately for extra help with it this week thanks to my dad.

Mostly I bury my head in the sand and don't think, it is actually a shock to me when people notice her difficulties even though they are blatently obvious now. I get by like this a lot of the time!

Thanks everyone. I really appreciate that i'm not alone with this atall.

I think in a way, I kind of just assumed things would become easier as I got more used to her ways I suppose. Evidently, that's just not the case is it....

used2, I can completely relate to you when you say that your DD will find a much younger child to basically just run round with. My DD does this a lot and it's usually boys too, although she never admits that she plays with boys There's part of me that's relieved that she's found another child to play with, but yes, on the other hand it's sad to see her getting more out of a 2 year old than a child her own age. Do you mind if I ask when you first had concerns about your DD and what were they?

OhDo, I will be going back to speak to my gp about being referred. Just need to build up the mental strength. Appreciate all your kind words too

I just wished I could relax and enjoy her for the next few weeks. I have to keep her entertained all the time, otherwise she will just go really deep into her fantasy world and I just can't snap her out of it. Another reason why the HV said countless times that she couldn't have ASD "her imaginative play is incredible". It's just not the case is it. It's nice that she can entertain herself sometimes, but I know how easily she slips back. It's bloody expensive though, even when you're deliberatly trying to keep the cost right down, you still end up spending more.

I got about an hours sleep last night because all I could think about was what will she be like at XYZ age? Will she have friends ever? Will she be bullied? Will she have a boyfriend? Will she get married? Will she have a job/career? I feel like my heart is breaking worrying that even one of those might not happen. Sorry for being morbid. Not having a good day i'm afraid.

I can sympathise with you, dd is only nearly 3 but the differences between her and others her age is becoming more+more obvious and its very hurtful to watch and I worry about how the gap will widen as she gets older. This weekend at a party I was reminded of how different she is again. Dd is also big for her age and we always have comments on it (she doesn't look 2, she looks more like 3 or 4 etc) this makes the fact that she cannot speak and has poor understanding appear worse. Her dad has 13 neices+nephews, 1 of them has asd, he is also very big/tall for his age when none of the others are, is this linked somehow or do they just have more of the same genes? They also both have curly hair while none of the others do.
I don't blame you for saying 'what are you staring at', its upsetting +frustrating when people act like that,

Summerhols, I find the best way to deal with worries about the future is not to deal with it! I try to only look ahead to the next problem or milestone, getting a statement, starting a new class, or a new school, and working really hard to make sure the next challenge is won. I have only a vague idea in my mind what the long term plan is. I try to live in the present or near future only. So I'm not sticking my head in the sand or being in denial, but I am trying to deal with issues one at a time. Then it's less overwhelming and I'm still doing my best for my DS2. I don't know if that makes sense or would work for you, but I thought I'd share it.

oso, tbh I have noticed a lot of other parents say that their dc's were taller than average who have ASD. I have no idea if there really is any link or not, but it's strange nevertheless.

I think most of the time I can just accept the way she is and of course i'm used to her and so although I know she behaves differently to most dc's her age, I don't really get to see the differences that often. That's just because she's now in school full time and so I don't really get to see her socialise as much as I used to. Recently I went a long with the class trip and it's a bloody good job I did cos nobody was watching them, but that's another story........anyway, it was the first time that I really saw just how different she was and it hit me like a brick! I remember thinking she was different when she was about 2, but mainly because she was so active and would never sit at toddler groups etc. In fact she was a bit of a nightmare and I hated going. Anyway, this latest class trip, she wasn't naughty or anything, but I realised that she really had no idea how to interact with her peers. She would just bounce up and down and come out with random comments such as a line from a film or that she loves them so much etc. I never know when to intervene. Do I say there and then, "no dd, you don't really say that" or "calm down a bit please" Obviously when we are at home I do this a lot, but when we're out, I don't know how appropriate it is for me to correct her in front of others.

Ellen, that's good advice about not looking too far ahead. I do try, but I suppose everything just feels really raw at the minute so i'm finding it difficult to think logically.

Over the past couple of days she seems to have developed all these different........ticks? I don't really know what you'd call them, but she keeps clicking her tongue constantly or she'll shake her head around and roll her eyes round her head and it doesn't matter how many times I ask her to stop. It's like she's getting some kind of release from doing it, so once again, I don't know whether to discourage it or not. She's also taken to shaking her hands a lot and pointing at and tapping her cheeks. It's really concerning me........

A craniofacial condition will cause stares and " you're really ugly", "why has she got that plastic thing in her neck" or "what's the matter with her?" comments. I'm afraid I have learned to develop a direct approach. I gave up trying to educate, as it never really works. The trachy question was easy enough "it helps her to breathe", the rest I just used to say "she was born this way" or if I was having a shite day it would be "there's nothing wrong with her". I would always tell starers that it was rude to stare. Adults are much worse. Btw. I also have a severely ASD DS with a milder version of the craniofacial condition, I just ignore the states now. I toughened up because I had to. Sorry that you're struggling with it.

sally, i'm sorry your dc has had such horrible comments. Forgive my ignorance, but what is craniofacial condition?

sally one of the things I struggled most with re ds's asd and LDs was that e was apt to make comments about children with facial differences.
He would never be unkind, just very direct.
I found it it almost impossible to cope with and would get very anxious before we went to GOSH etc.
The idea that his comments would add to the load of a family already dealing with ignorance just mortified me.
After loads and loads of work he doesn't do it now.

Sally, I'm sorry to hear you DD has had to deal with stares and nasty comments.

OP, I usually wouldn't step in if DS was getting it wrong socially, unless it seemed that DS was vulnerable etc, but I would redirect conversations a bit/whisk DS away if things were going badly. It is tough to see your child relating more happily to a child half their age, this still happens with my DS.

In terms of the future - I know of plenty of women with AS/ASD diagnoses, or suspected diagnoses who have jobs, families etc. The condition doesn't exactly help make life easier, but try and have hope for the future, whilst not getting too bogged down in worry.

Two of mine have something called Treacher Collins Syndrome. It's where the bones in the face don't develop in utero. DD was born with a very small jaw, cleft palate and her ears were affected i.e. they hadn't developed so she had no ear canals and screwed up ears called microtia. She has had 26 surgical procedures to correct things to give her a better life. DS4 is very mildly affected and hopefully won't require any surgeries until he is much older.
Sadly stares and comments go with the territory, but we just ignore it and carry on with our lives as normal

Sorry my post reads a bit 'it's all about ME!!'
I didnt mean it like that

Summer my DD has a genetic condition so was already monitored in terms of health so we were in the system iyswim. So she had Speech therapy from two. I noticed at 17months that she had stopped saying the couple of words she had at a year and took her to the doctors. We then had a bit of a red herring as she had glue ear so it wasnt till she had an assessment at nearly four that it really sunk in for me, and tbh it sinks in every now and then its been a gradual thing.

As for the future it is hard not knowing. But not knowing means every now and then I think it could still change.