At what level of closeness does exclusion become unacceptable? Disability related question

[avenueq]

So my son has a physical disability which means there are a lot of activities he can't do, which is becoming more apparent with increasing age - he's 12.
A friend's ds is having a birthday party which is an activity ds can't do. In the past ds would have been invited to this boy's party but it was stuff he could do. They haven't seen each other much since starting secondary but the mum and I are still close friends. Ds knows it's the boy's birthday and has been wondering whether he'll see him.

So anyway, the mum just said to me "of we course we couldn't invite your ds to this activity" and left it at that. Aibu to be quite sad? I understand that her ds wants to do this, but aibu to think maybe she could have added "but we'll do sth else with your ds"
She knows he doesn't really have any other friends. She knows it's hard for him.
I just feel a bit gutted but is it a case of just have to accept it?

If op's son wants to be Bob's friend, how much effort has he put into maintaining a friendship over the last year? Does he keep in touch by whatever means they use? Has he asked Bob if he wants to meet up for gaming/shopping/cinema/whatever other interest they have in common? Do they in fact have any interests in common? If Bob never hears from op's ds, how is he to know that he wants to keep up the friendship?

Secondary school children should really be arranging these things for themselves, not waiting for their mums to fix something up with somebody else's mum.

Bei g a disabled teenager is tough Op i was 1 myself a million years ago and it sucked ! I am sorry your son is being left behind his friend has moved on and tbh his mum should have thought about your son because you are all friends as you said pizza or something would be nice you are entitled to feel gutted for him. Who does he hang about with at school

I don't know, I feel you're all focussing too much on my over-expectations on the boy. I probably expressed it wrongly. But to me it boils down to this: my friend knows that I struggle with ds, worry about him etc
She's had ds round many times before and the whole family made a fuss of him and she knows how much ds loved it.
She knows how exhausting it can be for me to care for ds.

I am disappointed in her for not reaching out and saying "shall we have your ds round again one night"
To give me some respite, to help me out, to give some pleasure to a boy whose day to day existence is often not that great.

The birthday just brought it into focus - the way she just said "obviously your ds can't come"

She used to say how much ds's well-being was important to her, and she's lost interest. It's her prerogative and it's Bob's prerogative to move on, of course it is. Still upsetting for me and ds though. Not that easy to just find other people who will do this. There are none. The only break I get from ds is his grandma, and she's getting on.

Hi, I have special needs as well and a lot of my friends and I parted ways once we went to secondary, I was also sent to a residential school which didn't help things. I made new friends there, but it did take a while. Are there any groups in your area for your sons disability? That might be a good place to start, since a lot of organizations have youth activities or youth clubs you could join. Have you tried looking on Facebook as well? There might be things in your area that you haven't known about yet. I am quite restricted in what physical activities I do as well, but what are your sons interests? Maybe there are also some groups that are non-disability related but would be of interest to your son? I always loved languages and some of our neighbors were German, so I used to go over to their house a lot and speak to them, and I had a lot of fun. They were quite a lot older, it was a retired couple, but I still enjoyed it. I was doing something that I really liked.

I really feel for you OP. I've recently been dropped by someone I considered a good friend, I've done nothing wrong - someone more interesting came along and suddenly I'm not invited out anymore. I tried to be the one initiating stuff but found my friend was always busy. The last straw was her being unable to attend my 6 year old's birthday party (he's her godson) with her 2 similarly aged boys (my godsons) and then not bothering to send a card, let alone come to see him with a present.

It is so shit and with all the extra you have to contend with, I feel for you.

I think you need to decide if you want to allow her to treat you and DS in such a way again, risking the hurt she's caused. Or if you can take an emotional step back from her. That's what I've had to do with my "friend".

I agree see what is out there for your son he might find an outside away from school interest either a disability sport or activity or non disabled just somethibg to widen his circle. Btw your friend might not realise you need her support tell her.

Would you have found it better if she'd said "he's only inviting schoolfriends" or "the boys hardly see each other now, and he's only inviting a few friends"?

I think that would be more honest. The problem with saying we didn’t invite you as you can’t do the activity is that you are effectively saying you would have had an invitation, but you are disabled so....

It is incredibly hurtful. Fair enough children grow apart. It happens all the time, but be honest don’t use someone’s differences against them.

OP, I think this situation is complicated by the fact that you have up to this point you have been family friends. It may be that as the children grow up your friend just wants the friendship to be between the two of you. I think you have to speak to her about this. As others have said you can’t force a relationship between the boys if it isn’t there and you may have to accept that the friendship has changed.

I do understand how painful it is though. I have had a very similar situation with one of my friends. My youngest, who is autistic, is the same age as her DS and I have an older DS too. We were friends from when the children were small. As DS2 differences became more apparent, I noticed that my friend would always talk about how close DS1 and her DS were and how they were such good friends. She would book an activity for her DS and call up asking if we wanted to book as well, but just for DS1 as DS2 “wouldn’t be able to cope with the noise”. DS2 never got a look in and it hurt. I had to accept that she wasn’t my friend and I couldn’t look to her for support. Her focus was helping her son build friendships and DS2 didn’t fit the bill. it is so hard

I'm sorry but your expectations of your friend are too high. It is not her responsibility to provide you with respite or entertain your son.

Can you find clubs or respite that your son can access through local charities, if not via Social Care.

Where did I say it's her responsibility? She used to do it and it was great. Just once or twice a year.
She can do what she wants. It would just be nice.

The thing is, you don't know whether Bob actually wants to continue the friendship with your DS. If he doesn't, how would inviting DS round benefit anyone other than you? I completely appreciate that you could do with the respite, but if Bob is no longer bothered then he and DS would both be put in a pretty awkward situation.

Bob's friendship is not something your friend can dole out as a gift to other people. I don't think you're really getting that.

Your last 2 posts really show that you are expecting far too much out of this friendship between you and the other boy's mum.
You have so far only said what she can and in your eyes should do for you and your son.
A friend is someone who yes will be there for you but it is not her place to provide respite and to give you a break. To be honest it may be that she feels taken advantage of as all you seem to be focusing on is what you want.
She may have stuff going on in her own life and not want to be the go to person when things get tough for you. She may also find your son more challenging to manage when he is at hers now that he is older especially if her own child does not want to continue the friendship.
I would focus on giving your son the skills he needs to mix and make friends. I would also take a look at your expectation of friendship as it seems very much about what the other person can do for you and your family rather than an actual friend type relationship.

It does sound very hard for you Op, but I agree with @RussianSpamBot.

Yes, it is her prerogative. You are clearly struggling, but she cannot be expected to keep bringing her son round if he doesn’t want to come. Sorry, OP.

If you realise demand a carers assessment by a disability SW. google contact as it has the law and template letters.

Your friend isn't your friend to provide respite. If you want them round and ds will enjoy it- invite them.

I get it. I really do. I get no respite and have no one to have ds. But I'm not disappointed in people for having lives of their own.
If I want to meet people I suggest it.

Reading your update OP I feel for you, I really do. But I think that what you are expecting from your friend isn't reasonable.

It seems like this friend is the only person you have to rely on for support and respite and her son is the only friend that your son has - that isn't fair on either of them. Do you know what they have going on in their lives? Maybe someone in their family has health problems or she has elderly relatives that she's having to support or she's having a tough time at work or in her marriage - basically, she might have her own problems that she's dealing with.

If her son remains your son's only friend then how frequently do you expect them to see each other? Twice a year on birthdays isn't a friendship is it? So, once a month? Once a week? Every day? It isn't sustainable to only have one friend and to expect them to provide you with anything.

It isn't easy, I really do understand that but in the long run I think your son will be happier if he can make a group of friends rather than having to force one boy to spend time with him.

As regards respite, that's something that has to come from elsewhere I think. You can't rely on just one friend to be your sole support.

*Bob's genuine friendship is not within his mother's gift OP.

You're talking about her making the gesture, but what your son really wants is Bob's regard and that is not something she is in a position to give. She's particularly not in a position to give it if Bob has decided he's not interested in pursuing the friendship any more: inviting DS round would hardly be a kindness to either of the children in those circumstances*

^These are wise words.

I understand you want to protect your DS and make sure he is emotionally ok/not excluded and has friends- it is perfectly natural- but I think YABU because I think someone you have seen once or twice, if at all, in over 9 months would not count as a close friend for most 12 year olds (it can be different for adults). Therefore, the lack of birthday invite is entirely understandable.

OP, there is something really relevant here that you have been asked a few times but I haven't seen answered (apologies if you have and I have missed it) when you say the boys haven't seen each other much since the academic year started, so for around 9 months, has it been that you have sent invites but they've been declined by "Bob" or that things have just drifted on both sides? I am guessing they go to different schools?

If you've invited 'Bob' round frequently and he's declined then I think you have your answer- 'Bob' doesn't want to be good friends with your son. If they have simply drifted apart- common when children go to secondary school and friendships from primary school can drift easily unless both parties are keen to keep it going- then I think it would be unusual to expect your DS to be invited to 'Bob's' birthday party as they aren't close. Even more unusual to for them to then plan a specific birthday treat for your DS and 'Bob' as he isn't able to attend the official party. That is something you would do for a close friend.

Have you invited 'Bob' round in the last 9 months ? If not, why not? Your friend may have felt that the friendship has simply cooled, and the friendship more distant, and so hasn't made an effort to invite your DS over. If you haven't invited her DS round, then perhaps she thought you and your DS felt the same about the friendship and were also happy just to let things drift along. I think if you haven't made an effort, it's a bit much to then get annoyed that your friend hasn't either. If you have, and your attempts to continue the friendship have been rebuffed, then I think it also unreasonable to expect your friend to try and force a friendship where there isn't one.

Of course it's upsetting OP. I'd be upset too.

But it's not abnormal for their age group. If the other boy is of an age to choose his own mates for his birthday outing he may not choose the same friends as he did a few years ago.

Your son may not be being excluded because of his disabilities, he may not have been one of the friends of choice by this time anyway. It's how it is, and it's normal. Of course it will still hurt though.

None of what you're saying is wrong, but others are right in that you shouldn't put all your hopes on this lad who is the child of a friend. The best you can do is help your child make friends elsewhere.

Nobody wants pity/obligation friends. It would be much better for your son to have friends that want him for himself.

I agree, you're expectations of her are unreasonable.

You are effectively saying that she knows you struggle with DS, so her and her family should continue having him round once or twice a year to give you respite and because he enjoys it.

You probably don't know everything she has going on in her life and if her family want this to carry on.

She may well feel sorry for you and DS, but if her DS and the rest of her family don't want this to carry on, what can she do? It puts her in a very difficult position. Her DP/DH might not want this.... is she to put your need for respite above her family? They may find it challenging to have your DS overnight. I know you have him everyday, but it's not their fault.

Of course she wouldn't want to hurt you by saying that, or that Bob doesn't want a sleepover etc.

You want her family to continue fussing over DS, but that kind of thing usually stops at a certain age. I'm sure he loves being the centre of attention when sleeping over there, because it's fun, but realistically, that can't carry on forever.

The siblings of Bob and his family who used to lavish him with attention have also grown and changed. These are all natural stages in human development

You're not actually considering any other reasons why things may have changed. Or because of the distress and hurt it's causing you, you're not in a position emotionally to deal with it by thinking of anyone else.

You need support and respite, but you can't depend on your friend (and her family) for that.

As you dont mention DS dad, your siblings or your parents, I assume they dont provide any support. Perhaps see if there is a support group for parents of children with disabilities in your area. If you can't find anything, contact your local authority.

I have some social worker friends who may know of something. If you PM and let me know the general area you live in, I'd be happy to ask them about support groups or they would know the specific department/service area that deals with this in CYP (children and young people) within the LA.

There are a few different issues caught up in this for you I think, OP.

It is normal for friends to loosen the bonds if they are at separate schools. This seems to have caught you by surprise, which is fair enough. My own DD had a friend from Reception to the end of Primary and DD didn't get an invite this year to her birthday (different secondary schools). I think she could see the signs before they left Primary though.

You are friends with the mum. That is a completely separate relationship to that of your sons. Your post title (At what level of closeness does exclusion become unacceptable?) does show that you think your friendship has an obligation attached and you now feel differently about your friend because she hasn't invited him. If your son struggles to bond with people easily I can see why you have put all your eggs into one basket/family - but you haven't said what you've done for their family/son since the start of secondary. It makes it sound one-sided.

You do sound (understandably) overwhelmed by it all OP, and I appreciate that you liked the respite that the friend provided - who wouldn't in your situation? And it's fine to take some time to come to terms with it all, but I do think it would be a mistake to lose your friendship with the other mum over this. Do look in to other activities for your son, and speak to the school if necessary to see if there are any clubs there he would be interested in. Yes, like so many other times it will require work from you and I know that is what you didn't want to have to do again - I don't underestimate how exhausting it can be to have to fight for every bit of progress on your son's behalf.

As I said, it may take some time to come to terms with, be kind to yourself if that is the case.

It may be that her DS has had a word and told her that he doesn't want to peruse this friendship much more. She can't invite your son around when her son may not want that level of contact anymore.

I’ve read your updates, OP. I don’t think you are being unreasonable at all.

When I was growing up, I had some friends of my own, and my parents also had close friends with kids my own age.

My mum has told me a story about one time I had had major surgery and was still in plaster, one of her friend’s invited me round for dinner. I wasn’t particularly close friends with her sons, but we were fine together. The point of me being invited was to give my parents a break, and it was a huge gesture and made a huge difference.

I was quite complicated to invite around because of my physical problems at the time, so not many people did.

I can see that it’s very upsetting that she’s stopped. The thing is, does it have to be on Bob’s birthday? Could it be another time?

Now i’ve read your updates, I think it’s worth talking to your friend about, if you can face it.

WobblingWilma, I have two children, now adults, on the spectrum. The difference between a temporary problem and a disability is that the latter is forever, in one form or another. So to be kind and thoughtful once, or for a set period of time is easy and many manage that.
But to be a supportive friend for years, decades? That takes an exceptional person and they are thin on the ground. Especially if the additional need can sometimes result in bewildering, challenging or aggressive behaviour (thinking of my two)
And as a parent, desperate for your child to be happy, or desperate for a break, it’s a constant struggle not to be needy, or a victim. We have no choice but to manage our children, but others do have a choice and many choose to distance themselves.