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?

she made it sound like the family really enjoyed it

They probably did enjoy and there's no reason to think she was being untruthful.

You're not factoring that people change. We don't all enjoy the things we used to.

We don't always stay friends with those we used to.

You're not only placing expectations on your friend, but her entirely family. Surely somewhere in the back of your mind you see that you're being unrealistic here?

Even if the rest of her family would be okay with your DS sleeping over, if Bob isn't keen it won't work.

You said the family all fussed over him, from Bob's perspective he could have been jealous that your DS got all the attention when he came over and he was overlooked.

There are so many issues you haven't considered regarding their family, because you're focused on you and DS. The thing is she's focused on her family too, which is how it should be.

A lot of nice things in life come to a natural end, because individual circumstances change over time and what was once possible isn't any more, for a whole host of reasons.

I haven't seen any callous comments in this thread....just ppl trying to help you understand that kids move on and grow out of friendships, regardless of disability being a factor.

Avenue Have you invited him over a few times the last year ?

They may have drifted apart with different schools & new interests, especially as the other parents no longer control his social life at 12.

However, maybe you can rekindle the friendship if you invite the other lad round a few days after his birthday, or take them out for a pizza
It sucks to always have to work so hard for him, but also investigate clubs, especially for sedentary activities

Different groups of friends often don't work together - your DS would not have known anyone else if invited, which can be very awkward
However, the other boy might find he still enjoys the friendship one-on-one, in which case you would then receive invitations again.

I feel for you, OP, but I do think you are expecting too much from your friend. She may have suggested another activity, or inviting your DS and her DS may have said no. A year is a very long time at their age.

They are at different schools. I had friends from the age of 4 - 11 and we went to different schools and I never saw them again, apart from in passing. It's the way of the world. We can't carry every friend we make throughout our lives.

Concentrate on helping DS to make friends in his school, find activities he can do and hope he makes friends there.

The friendship may well have died years ago were you and the mum not friends. I'm sorry you are so unhappy.

I understand OP.
Some comments on here are callous. I would invite your ds round in your friend’s shoes and it’s not too much to expect.
I’ve had the experience you’re having and it hurts.

I think you might have to organise something for the two boys though or invite their ds over.

Does your ds have a phone? Can you encourage him to invite the other boy?

@gamerwidow

It’s her son that may have grown apart from him and that’s ok

her son has the right to choose his own best friends. He doesn’t have an obligation to your son however painful that might be to you and him

This is really the crux of it.
Logically, any parent would facilitate a friendship with someone their child was friends with if they could.

Once the friendship has faded out, you can't force it.

Friends with DC with additional needs have mentioned that virtually no one invites their DC to do stuff, perhaps because other parents / other DC don’t enjoy the DCs’ company, find behaviour challenging or fear it becoming challenging. They think that few people want to include DC when this involves themselves or their own DC doing it.

As a scout leader I can confirm Scouts is a very inclusive organisation committed to providing sessions that everyone can enjoy regardless of their disability.

It would be extremely rare to have an event or a session where we have not made sufficient adaptations for everyone to take part. Personally I would feel I had failed if I hadn't offered all of my scouts the opportunity to take part.

When we have scouts with a disability in our group we will tend to plan a programme biased away from activities that we known they will find more tricky.

It is a great way to try new things, have fun, build resilience and make new friends- may be worth a try for your DS OP.

I'm sorry you and DS are going through this. I can see how hurtful it must be. I agree with the posters saying it's normal for children to grow apart. My son has distanced himself from the DC of my friends and I have respected that. I can see though, that this is really tricky as your DS hasn't many other friends. However, forcing the friendship is unlikely to end well- better to facilitate your DS making new friends......

I've got a sibling with SN, as it happens. Older, so it's never not been part of my life. I still know that our children's friendship is not something that is ours to give away.

That is not to say I think the friend has handled the issue well, but when it comes down to it, she still isn't the one whose decision this is.

Even if the friend was ready to take on guardianship in the hour of need, that’s a whole different ball game from a party! Bob may have said to his mother

“I don’t want to play with DS anymore because he.....!”

I have a DD with SN (not ASD), who was always in special provision and many of her school friends had ASD. The mother of one of them, a girl with HFA said to me once, that the girl’s friends from mainstream said to her:

“Can’t she stop talking about football?”

(Her special interest)

Ime, 12 year old boys are often not great on empathy! DS was out playing football every break and lunchtime at school, because he said the bullies were picking on boys standing around; not those playing football!

Some comments on here are callous.

Can someone explain how posts are callous?

Genuinely, I'm trying to see the other pov.

Even if the boy's mum organised an extra birthday activity that included OPs son, it's still only one event in the entire year isn't it? Surely he wants more than just one friend that he sees once a year?

Why isn't it a good thing to suggest ways that OP can help him to build a wider circle of friends rather than relying on just one boy?

That must be difficult. Just remember people get busy with their own lives, maybe it's just too much for her to manage at the moment. Try to make some new friends of your own, and try to focus on something else.

I think you’ve two separate issues.

The party - well, look at it this way; it’s likely your ds would have been ignored by Bob or resented by him if your friend had made him sit with him so whilst it understandably makes you sad, your ds could have ended up feeling really rubbish after it!

The respite - I’m sure she enjoyed having your ds over. I’m sure they did adore him. But things change with kids so much, as you know! Perhaps her family felt it was too much as he got older? Perhaps when Bob and he drifted they just figured there wouldn’t be any point anymore.

Who knows the reason? I’m sure it wasn’t done maliciously though!

Can understand that you feel shit about it. I really can.

But as plenty have said, I’d focus both your energies elsewhere for self-preservation if nothing else!

I've found Drama classes to be really inclusive, OP. Would he be willing to give those a go?

I'm sorry, OP, sometimes life can just be a bit shit, extra so with disabilities making things much harder. I hope things get better.

I'd also suggest having a chat with scouts, he might be able to do a lot more than you think, and the local group can get help from District level for training, ideas and practical help if needed.

Also are there any chance clubs at school your Ds could join? Our DS was fairly friendless when he started secondary and I know full well that it's not as easy as some people think to 'just make new friends', however he has found his tribe in the science and Warhammer clubs that school run (games workshop help set up clubs at school, it just needs a teacher up for it).

I haven't had time to read all replies so ignore if needs be. My friends foster child with quadriplegia is totally dependant on his wheelchair. He goes fo cubs and has been camping and everything with them so give that a go for sure. It has been a great source of friends for him.
I have several children with complex needs and I get how hard it is to care day in day out and I also get the heartbreak of seeing your child excluded as they get older. But sadly it is harder when they reach adolescence to find those people who can offer support and friendship. My oldest son had a terrible time at high school. Peer pressure and being bullied were all too common. It was horrible ( asd diagnosis in his case ). My other two with sn do not have the understanding to know they are different and so are happy in their own little worlds which is much easier to bear as a parent.
What about school ? Is it a special school ? Any friendships to cultivate there ?
The only thing I can say is that my eldest is 29 now and life has improved a lot as he has reached adulthood as people are more accepting and tolerant again at that age.
Hang in there X

Also OP you've avoided responding to an important question asked by lots of people - when was the last time you and ds invited Bob to yours or to any activity?

Lots expectations from you about what they should be doing to prove they are good friends, but nothing about any steps you or ds have taken to sustain the friendship or reciprocity.

In fairness to the OP, I think as the thread has gone on it’s become clear that it’s the break from ds she misses, which is completely understandable, even if she’s BU in her expectations of her friend!

I completely understand your feelings, it’s so disappointing when you feel let down by a friend who you thought would go above and beyond to be supportive.
He absolutely could be a scout though m. Bear Grylls is chief scout, and if you look at his instagram you can see him with disabled scouts. If you can take any positives from this might it be that it galvanises you to seek some new friendships opportunities for your son? I know it’s hard to always be fighting but if you don’t no one else will sadly.

OP - I do have sympathy as it does sound like hard work.

Perhaps asking ds’s 2 older sisters to help him specifically for short amounts of time may be beneficial? I have younger brothers and it helped when I had kids that I had helped (a small amount) looking after them, homework, babysitting. Perhaps when their friends come over they can hang out with ds for like 30mins?

I don't think asking the older sisters friends to hang out with a 12 year old boy is the way to go. Babysitting is one thing, but the expectation that they include him in their social time? That is asking for resentment.

I people can’t ask relatives to do this, isn’t it harder to ask friends or friends’ children?

What I learned from having a kid with additional needs is that you need to work to find activities they can do rather than expecting people to adapt to them. In our case it's autism so not physical but I learned early on that kids can't be made or encouraged to be friends with dd. We found ordinary community based activities that she could do and some would work for physical disabilities eg choir (there are two with physical disabilities currently), woodcraft folk were very welcoming and there was a boy in a wheelchair at that branch who was fully included, scouts are pretty good at inclusion too. I never relied on her "making friends" because that was hard so we ensured there were things 2-3 times a week. I have friends with the same age kids as her, you cannot engineer friendship unfortunately.

I had not finished my post, but had to do stuff in RL. As the parent of a SN child, imo, its partly up to the parents to make a social life and out of school activities happen for DC.

Is DS in a special school? If so, have you gone round the parents of the other children in his class at parents' evening to create a contact list, with their permission, so you can organise class picnics and activities in the school holidays; and Mums' Nights Out - I did it for DD's class through primary school? There was an unspoken rule among the parents of DD's class of ten, that we all invited the whole class to DC's birthday party whether our child liked all of them or not, because they weren't likely to get any other party invitations, and it was the only respite most of us tended to get. Or, set up a support group for parents of children in the school.

I set up a support group for parents of children with DD's primary SEN in my county.

If he is in mainstream, have you joined the Parent Carer Forum - there should be one in every LA? Ask there or look on the LA's local offer to see what SN groups and activities there are? For instance, a parent near me set up an inclusive special needs drama group for SN children (starting with her son) and their "normal" siblings. Another set up SN trampolining sessions on a Sunday morning at a local sports centre - well that might not be suitable for OP's DS; but its up to her to think of something he and other children could do?

As for OP is not likely to get respite, because DS's needs aren't severe enough on paper - what paper is this? I suggest if OP has not done so already, she ask for an assessment of need for DS under S17 of the Children's Act; and a carer's assessment for herself. When she has got the drafts of those, go on the special needs section for further advice on what to do next. For instance, my DD was offered as a teenager, a buddy service whereby a "normal" young person would take her out to activities for their age, like ten pin bowling, the cinema, etc.

I am late to this. I really feel for you and your DS. I understand that the fact he is loved and cherished by his immediate family is not enough. For you or for him.

I have some insight - my beloved oldest DD (just turned 18) is now in recovery from a serious life threatening illness. For 2 years she was very ill and for one year (year 10) she wasn’t in school at all. All her friends fell away. She was too unwell to go out really. But could have had people over. She had no-one. It was heartbreaking to deal with a situation in which we had no guarantee she would recover (she came close to dying) and also witness her depression and social isolation. Of course I was aware that her peers were studying for GCSEs and forming romantic relationships. Of course it was true that they didn’t ‘owe’ her anything. And that their parents couldn’t ‘force’ them. But still, a bit of human compassion would have been very much appreciated.

I am fortunate in that my DD is now very much better and has formed other friendships. So I’m not trying to equate my situation with yours. But I do get it. There are memories of her loneliness during this time that are just as painful for me as recalling her desperate ill health.

I don’t have any answers I’m afraid. Just wanted to say you are absolutely not unreasonable to have wanted and hoped for more from your friend.

I really wish you and your family well.

LadyMacbeth so glad your dd is doing better!

Can I ask, did you invite people over to her?