rhino skin required??

[chonky]

I'm really struggling as to how to relate to parents with NT kids at the moment.

On Thursday, we went for dd's six month review & it turns out that we're now being referred on for another opinion. Whilst that is brilliant in terms of we can be sure that dd is getting the benefit of loads of expertise, my heart sunk at the prospect of more interviews, tests etc. I guess I'm still feeling a bit low because of that.

Then on Friday I was chatting to a friend & describing how dd is very unsettled (I think as a result of all not being well neurologically) and this mum said 'Oh, my 18 month old dd is just like that at the moment, I think it's just a phase that they go through....' I responded by saying that in the case of dd it's a six month 'phase' with no light at the end of the tunnel at present.

Then on Sat I was out with the same mum and some of her friends. As soon as the evening started I thought 'oh no' as the bragging about what their kids had achieved at nursery started and I ended up blubbing. The friend then said 'is it because all of our kids are.........?'. Fortunately she stopped short of saying normal. She also said that the women could sympathise but not empathise. I disagreed with this, I don't want people to pity us, not for a minute, but perhaps would like people to try & empathise as to how we feel sometimes.

Having just moved to a new town I feel it's really important to try & make new friends, but I'm finding it so tough as I just feel hypersensitive all the time. I have a positively gorgeous dd, who I love to bits, and yet as soon as I meet up with mums like the above I find that all of her lack of milestones just get highlighted (unintentionally of course).

Sorry, this is a long mopey thread, but I could really do with some advice on how to toughen my skin. I know the comments are insensitive because I choose to interpret them as such, but I can't help feeling in one sense I'm being told that she's exactly like other babes & I shouldn't highlight her as being any different (or suggest that I'm finding it tough!!), the next moment I'm being told that she's not part of the group, she's different.

It sounds as though your friends have all the sensitivity of a rhino.

I wish I had some useful advice but sadly I don't. Do you have any local support groups etc where you could meet parents with children who have SN? I remember what a relief it was when I went to my frst support group meeting and there were lots of people sitting around talking about children who could have been ds1 IYSWIM.

Hi chonky. Oh this bit is so hard hard hard . I understand where you are coming from with all of it and can completely empathise (!).

IMO, the simple fact is most people just do now know how to deal with disability/SN. So either they try and play it down, or they ignore it and hope they won't have to comment, or they feel awkward and end up saying clumsy things.

I cope by avoidance as much as anything. I have a few very good friends who I know are completely comfortable with dd and also appreciate that she is different and that does make it hard for me and I tend to only spend time with them. Obviously that is much harder for you when you are in a new area.

I completely understand what you say about not being 'allowed' to talk about your dd being different or how that makes it tough for you. I can't begin to count the number of conversations I have had with people who say things like 'it's not really that different looking after W than other kids is it?' or 'oh well, if she gets there eventually it doesn't matter how long it takes does it?' Grrrrrr! I have had comments like this from good friends who I know mean well, but I think to a certain extent they say these things because that makes it easier FOR THEM to deal with. If in their mind, dd is essentially fine, just a bit behind, then they don't have to worry about us so much. Does that make sense?

My dh says that he feels it is down to us to keep reminding people that it is different and it is hard and that dd IS disabled. That's not because we want people to pity us but because we want them to understand and not to ignore it. He is very good at being very direct (if a little blunt) and if people make comments like the above he'll say "she is 2 years old, she can't crawl, she can't talk at all and she has 2 seizures everyday - how is that 'not very different'?"

tbh I don't feel I can say that sort of thing - a) because I would probably blub and b) because it feels disloyal to dd somehow and c) I'm not so comfortable with making others uncomfortable IYKWIM.

But I have found that what works best for me is to be very matter of fact about dd. I feel that if it seems that I am comfortable talking about her and her disability then it will be easier for others to approach the subject or talk properly about it without getting embarressed. Of course there are some people who just avoid it and are never going to try and make any attempt to understand, but I have found that with most people it does make situations easier.

Hmmm, I can obviously talk about this for ever. I think it is the hardest hardest part of having a child with SN. I often think that when it is just dd and I, none of it matters. She is just who she is. It is only when we go out into the world that it is hard...

sorry, not sure if that has helped at all.... I'm rambling. But hugs to you chonky, you are not alone in this in any way.

You're making utter sense. It IS the hardest part of having a child with SN, as you say when it's just you & your dd you're protected from comparisons and you can just enjoy her without other people's daft comments. It does make me cross even when I have to explain that at 6 months dd can't yet grasp an object (that's if she can actually see it to grasp!!) and so needs constant 1-to-1 attention otherwise she bawls. All the other kids are quite content on their playmat putting toys in and out of their mouths. It's flippin' obvious that there's a problem!!!
I even have people discussing with me 'oh, who do you think will have their second baby next...?', whilst dh and I are on the waiting list for genetic review so can't even consider another pregnancy yet (not that my jelly belly could cope with another pregnancy just yet ).

I think it's very tough if you don't have prior experience of SN to know what to say, and even my family gets it wrong sometimes & they have lots of SN experience.
My MIL & FIL however refuse to even acknowledge that dd has a disability, when they do remember to phone they ask 'so, is everything OK then
now?'

I have just joined a lovely support group, and a couple of the others have been kind enough to invite me for lunch this week as there's no group (bl*y half-term). I hope very much that they'll go onto being good friends, as I like them regardless of the fact that their kids have SN, but having only known them for three weeks I feel it might be a tad early to phone them for a whinge

Thankyou for relaying your experiences, it does make it easier to know I'm not alone in this when dealing with some of the comments.

Right .. I'm going to have a stab at this .. but I'm afraid this is going to be a ramble

My children are NT yet I find myself able to empathise with mothers of children with SN .. but I do think this is ONLY because my DH has chronic illness which we have lived with for the last 7 years ..

Look at me before he was diagnosed and I was far more selfish, egotistical and unable to empathise with others .. I sympathised with others but if I'm honest NO I wasn't truly able to empathise (although I think I thought I was) .. because my world was wrapped up in some nice comfortable shell and those kind of things happened to other people

So actually I think your friend was right .. she can sympathise but she doesn't have the ability to empathise with something that is so very much a part of your life .. she doesn't have the vocabulary to cope either .. you think she was going to say 'normal', would it have been that much better if she'd known the phrase 'NT' and used that? I don't think so personally it still denotes a difference

As for toughening your skin .. yes I think you are going to have to .. people are insensitive without realising it ... they say stupid things without realising the repurcussions (I'm sure you do in other circumstances .. I'm bloody sure I do)

Personally I find that turning things into a joke defuse most situations where I can find my back going up .. but inside I'm screaming

Feel free to ignore me I just wanted to put a different perspective forward

Chonky I completely empathise. Since we've realised that DS has problems, most of our friends have disappeared into the woodwork. I think they really don't know what to say/how to confront things, but it does hurt - now is the time when we could really really use some moral and practical support.

I think friends who have kids of their own are particularly uncomfortable with it, maybe because they do have some insight into how it must feel?

Like Twiglett, I was much more egotistical and selfish before this came along and turned our world upside down. Yes, these things only happened to other people. But without wanting to sound horribly smug or self-congratulatory, I think I'm a better person because of it. I don't mean that I wouldn't turn the clock back or change things if I could, of course I would. But I now understand a lot of things that I had never even thought of before.

I tend to use the expression 'average' when comparing or talking about DS, rather than NT - but what is average anyway?

Chonky, it is incredibly hard and can be very isolating. Not only do you have to cope with coming to terms with the diagnosis, you also have NT mums and their wonderfully NT children. I used to find myself explaining all the time but now I don't offer explanations unless asked. I find it very hard when competitive NT mums start stressing about 'delays'- as in 'my one-year-old is only saying three words and is that enough and blah at nursery has lots more' and you just feel like screaming at them! I am very vociferous about my dd's achievements now as I realise now how incredible they are. Agree with Twiglett about how going through something like this totally changes you as a person (for the better, obviously ). That support group sounds great and do open up and moan, that's what it's all about. As for in-laws not accepting it, well that's another story. I had a ranting thread about that somewhere. Will bump it! Big hugs and good luck.

Twiglett, I do agree - and the perspective that you've put forward is one that I think about a lot. I'm sure that if my dd was NT, I'd probably be worrying about saying the 'wrong thing' to someone with a child with SN (& no doubt I still do say the wrong thing on a regular basis). I'm ashamed to say that I also did think that it was the sort of thing that happened to 'other people', not me.

I just struggle to find a balance to be honest. The last thing I want people to do is to walk on eggshells around me, or avoid me, because they don't know what to say. I am grateful to these people for inviting me out when I expect I am pretty hard work at present. However, I'm at a stage where I'm finding it hard not to blub when people make comments that I know are essentially harmless but that touch an exceptionally raw nerve. I've cried very little up to now, but the past two weeks seem to have been a blubfest. I do know that the comments were not made to upset me, but unfortunately at the moment they do. It is my problem, but I'm not too sure how to deal with it at present.
DD is 6 months old, I'm hoping that as she gets older I will find it slightly easier to deal with the social side of it, but at present I find it tough. Avoidance is the best way at the moment, but I know I can't hide forever. Maybe having a firm dx will help, I don't know.

I have changed a lot over the past six months. I feel that I now notice things that I would never ever have noticed before. I really hope that it has made me a more thoughtful & kind person. I think it's shaped me as a parent by forcing me to be more pragmatic, but that is all, I certainly don't consider myself to be an example of 'good' parenting.

It is a difficult one. At the end of the day we want people to be sensitive but at the same time be themselves with us and not wrap us in cotton wool and not metion this and not mention that just in case they upset us.

I had a day of raised eyebrows at a kids party yesterday afternoon, everytime anyone said 'How old is she' and I sai'Almost 3' sure enough, eyebrows shot straight up. How could this small bumn shuffly, not talking 'baby' be 3 years old?????!!!!!! Some people I offered an explanation to and others i thought bollocks, work it out for yorself or don't I'm not bothered!

Sorry, a bit off track there but........

Yeah, know what you mean Thomcat. I have a key chain of pictures for dd so people kind of know there's something going on! I can't stand all that, 'how old are they?' stuff. It's often not interest, it's to do with comparing and contrasting babies and developmental levels. RAnt, rant, rant!!!! A little girl came up to me in softplay yesterday and said, 'Look at me, I can dive in here like swimming. I am 3-years-old'. I find NT children terrifyingly advanced! (even my own seemingly NT ds!).

People find the Makaton incredibly interesting as well, lots of 'ohhhh is she deaf', sometimes I explain and sometimes i just look at them like they are mad, frown sy 'no' and get back to signing/playing with Lottie! Some people seem interested and nice, others are just nosey and want to know what's wrong with the kid in the corner! You know the ones who really want to know more and talk to you and that's fine, others you know they'll just nod their head say 'ohhh' and look away.

Yes, I've had that, too. I went to a birthday party a couple of weeks ago and I had dd's key chain of pics on and did intermittent picture exchange with her. Lots of mums were staring but trying not to. At mealtime (narrow table, children cramped together and none gluten and dairy free food- total nightmare for dd) I stayed with her on a separate table. One mum came over and said, there's room here for your daughter.I said, thanks very much but we're fine. I'm always too busy chasing dd around to interact with mums of NT kids much!!

ROFL jakbrown- I remember going to a party where all the mums of NT kids were standing around gossiping. Aparet from me and my friend (autistic dd) - we kept passing each other on the stairs.

chonky no advice really as I gave up trying to mix with NT parents (except close friends who do understand iykwim) ages ago. However am going to give it a second go now number 3 is being born. HOwever if it becomes too painful or difficult of they prove to be of the variety that you met then I won't bother. You do need friends though so do you have chance to meet others with your dd's condition- both locally and more nationally. I get alot of support from people who live nowhere near me.

Just want to add another party story!
We went to a party at the weekend. Ds3 is autistic and can find this sort of thing very hard. There were some balloons at the party and ds3 has a phobia of them which school and I have worked very hard on. He was ok until some of the children started popping them. He was then so distressed he ran out of the room crying hysterically and could not go back in to the party. We decided to leave and as we did so another mum asked why we were leaving. I told her ds was scared of balloons. A mum then unconnected to this conversation then butted in with "Kathryn has spent hours putting the balloons up, shall we take them all down just to suit you".
I was totally gobsmacked. The mum who was holding the party had no problem with us leaving. I certainly had not asked to take the balloons down.
What amazes me is the woman who made this comment knows ds3 is autistic and actually works at the playschool where until yesterday i intended to send ds4.
Rant over

chonky I wish I could help you more.
I think when people try to play down your childs problems they think they are making you feel better. The problem is they really don't appreciate the global effect having a sn child has on the entire family.
I hope you will get support from other sn parents.
You will develop a rhino hide and a few chice comments over time.

Agree maddiemo - I think the thick skin comes naturally over time. But right now chonky tbh I think I would avoid group meetings of mums with NT kids, and esp if the group knows each other because of their kids. They will naturally talk about who is doing what, and although you might hope they would be more sensitive to you, chances are they haven't got a lot else in common.

I know you are in a new area and need to make friends but I think I would look to the SN support group for this at the moment. You may find that when you have had a chance to come to terms with your dd's SN more yourself first, you are better able to deal with 'NT' mums, but right now, well, I wouldn't put yourself through it. The kind of friends you are going to need are the ones who may not be able to empathise but who are caring enough to realise that 'sympathising' doesn't mean saying 'oh poor you', it means being sensitive to how you might be feeling, but above all it means being interested in your dd and accepting her and WANTING to UNDERSTAND your situation. Tbh - it doesn't sound like any of those women is going to fill that role. If you think any of them might, try and see them one to one. Groups are always the hardest.

Wondering, as a parent to "NT" kids...
If some1 says (of her SN child) "She can't really say any words but she can sign X, Y, Z (long list)...", is it ok for me to reply about my child who is the same age as hers "Well, DD can only say 3 words, & she doesn't sign anything." Thereby implying that her DD is actually ahead of my DD in language cognition if not physical ability to speak....

Is that being insensitve by dismissing her concerns? Or being positive by pointing out that the differences between her SN & my NT child may not be as great as she worries? Reading this thread, I wonder if the only safe reply might be "hmmmmm...".

Hi Chonky

sorry I don't have anything new or particularly constructive to offer, but say hello to dd for me.

Hi zebra - I'm sure it must seem like knowing the right thing to say is impossible. And of course, every mother with a child with SN is different too so what some would find offensive/upsetting, others wouldn't.

I can only speak for myself but rather than replying with something like that, which could be seen as dismissive, I would prefer it if you asked me a bit about signing, where she learns it? how easy is it for us to learn it? maybe even ask me to show you what a few signs for things are, like hello or mummy.... because that way you wouldn't be comparing my dd to anyone else, or trying to make me feel better about anything, you would just be taking an interest in my child and that is what, at the end of the day, is most important to me.

Zebra - I probably wouldn't tell anyone who hadn't asked what Lottie was signing and what she wasn't saying. If they asked then i'd tell them and wouldn't mind anyone telling me what their kids were doing. Point is I wouldn't stand and list and compare what my kids doing compared to your kids, I hate that comparison thing and avoid it like the plauge with mothers whose children don't have SN, what's the point?

When exactly does your skin get thicker & you harden to this type of situation???

I feel lucky in a way, my circle of friends I met through the clinic when ds was a few months old, they knew me and ds and hopefully had accepted us for who we were before dd even came along. When she did- I must admit,it was very hard to go into a room full of them, all with their NT children. Would they accept her? What would they say? I had nothing to worry about really, yes a few inappropriate comments that were said and immediately apologised for, but I was lucky enough to have friends- that although they knew nothing of SN ( but neither did I at that stage)were interested in finding out more and taking dd under their wings too.
I took dd to a party a week or so ago. I didn't really know anyone else there but it was for a little boy that dd goes to the same SN nursery as dd and we also know through the physio group sessions. I was very apprehensive at first because the majority of children there were NT and I wondered how people would react to her. I sensed that one mum in particular seemed rather uncomfortable around dd, but in general everyone was lovely-I try not to give people to opportunity to wonder, I suppose I offer information freely-perhaps too freely. I'm not saying that this is right but it does seem to work for me. I worry about others lack of knowledge about dd's condition so I try to put accross the fact that if they wanted to learn more I am open for talking about dd and our lives toghether. Hopefully the more understanding people have the better it will be. I would rather someone come up to me and ask what they may think is"a stupid question" rather than feel awkward, not know what to say and ignore dd altogether. On the other hand there are others out there who's attitude stinks so much- I really don't think I could give them the time of day.

OMG enough of my waffle-I haven't even started on the "compare thing" either.

This thread has given me food for thought - I'm sorry you're having to deal with such crap insensitivity.

There's a little girl with Down's at one of the Mums and Tots groups we go to and, afaik, I have just chatted to her Mum in the same way I would to anyone else there. I certainly wouldn't launch into a comparison between her dd and my ds2 - but I'm not that kind of Mum anyway. The fact that she has Down's hasn't come up - her Mum hasn't mentioned it and neither have I. I don't know if that's good or bad - but it seemed pretty pointless for me to say "oh, she has Down's [or as Eidsvold was asked "a bit of Down's?"]?" - as her Mum already knows that!

I don't know what the solution is - I don't expect it's possible to toughen your skin to such an extent that stupid comments are going to bounce off. I hope you find some understanding friends soon.

I've not really been in the situation you all describe, I think because my 8 year old daughter is nt and a lot of her friends have siblings ds's age so he just sort of got absorbed into the group. Although he doesn't take much notice of the other children he is never excluded from after school or holiday outings and everyone just seems to accept him for who he is. (Maybe that will change as he gets older though) My closest friends have been brilliant and even when ds was at his most difficult would offer to babysit. I didn't realise until I read your posts just how lucky we are to have that.

I don't actually know anyone with an sn child but that is because ds went to an ordinary playgroup (with support) and now that he is at a special school he goes by taxi so I never meet the other parents.

I'm not saying there haven't been moments, like when ds was the only child not in the playgroup nativity play.. I went home quite choked up after that one but I have to accept that it was because of my own feelings, not because of what someone else had said or done. I've found that now I've got braver about telling people in a matter of fact way that ds is autistic it is easier. On the whole people don't mean to be unkind and sometimes they really surprise you. For instance there was a lovely lady at the fair who let us have the toddler merry-go-round to ourselves so that I could go on with ds and she could stop it straight away if he was too scared. Things like that give you a bit of a boost and make up for some of the other stuff.

Dingle My son is now six and I just find it easier to deal with the whole situation now. I worry less about what other people think of my family and ds.
I would not say I have hardened to comments, they still hurt, but I know my family and their needs and take less heed of other people.

Zebra I agree with Thomcat. I would not enter into a "what my child can do" conversation. If I don't know someone I normally start a conversation alog the lines of "Hasn't your ds got lovely hair/eyes." If the child has sn and comes up in conversation I would chat about it and be guided by how they sound about it.

I think I'll join you in being hypersensitive today, Chonky. Just clicked on the SN threads and have gone all tearful about the advert at the top of the page. The one about not missing out on your child's first words, first steps etc. Somebody give me a quick slap!

I'm gonna give you a hug instead of a slap Coppertop! Whether you wannit or not! ((((((hugs)))))) xxx

Thanks, Chocol8. I think I must just be a bit hormonal. It wouldn't usually bother me.