Party poopers

Today, a friend I’ve known for a while invited me over to his son’s first birthday party. This friend of mine is a lovely guy, really sweet. But he’s not really a close friend and perhaps I’ve not made much of an effort with him since Samuel arrived. Which makes his invite all the kinder.

Anyway, I turned it down. Well, I actually said I’d think about it but I think we both knew I was in fact turning the invite down. But this time I decided to explain why:

Being honest, it’s not always comfortable for us being in a house full of people we don’t know. We do tend to end up standing out and having to deal with people staring and asking continuous questions. We’ve been places where we end up feeling like we are being treated like a bit of freak show.

He text me back saying he totally understood, which I knew he would. But it did make me think about how we, as a family, deal with people we don’t really know in social situations.

We went to a party quite recently where some of the people knew vaguely about Samuel’s condition and some didn’t know anything about him at all.

Everyone was kind and I know they did really mean well but having to take the sympathetic looks, the ‘oh bless him’ remarks, the ‘will he grow out of it?’ questions….the questions, always so many questions. We know people are interested and we are all by nature curious, I know I am. But when you are at a party, you just want to chill out, have a chat about trivial stuff and eat far too much of the buffet food. No one else gets the third degree or has to repeat themselves to every new person they chat to.

And what do we say? ‘Normal’ people, do you understand what Global Development Delay means? If I say severely disabled, or very special needs, does that explain Samuel? Sometimes I very early on say that he is just like a little baby, maybe about 6 weeks, but people don’t seem to understand I mean he’ll be like that forever. ‘Will he be able to go to normal school?’ ‘Will it effect his speech?’

I also have found at these social gatherings that I spend a bit of time reassuring someone that it’s fine, they’ve not offended me, or put their foot in their mouth when they’ve later realised that they have actually put their foot in their mouth. I understand people are human. We don’t always think before we speak and we just head on and say whatever comes into our minds.

I find it much easier when we go to parties where there is at least one other child with some kind of condition as most of the people there will then have experience of disabilities and wont stand around staring at Samuel having his lunch through his tube (there has been occasions when we’ve had about three or four people just sitting there watching him being fed for 45 minutes, totally fascinated).

I sometimes wonder if part of the confusion and curiosity is that Samuel looks (as someone put it recently) so normal. If he looked ‘different’, or had equipment attached to him, would that help? I almost feel like maybe at the start of a gathering I should take to the floor and just make a small announcement:

Ladies and gentleman, I’d like to introduce you to my gorgeous son Samuel. He is 20 months but due to a genetic condition which affects his brain, he is like a 6 week old baby and will be like that for the rest of his life. He wont grow out of it. He was born full term and yes I did realise that something was wrong during the pregnancy. He is also epileptic but has medicines which help treat the seizures. Yes he has seizures every day. You may notice us feeding him later through a tube that is attached to a pump. He has poor coordination when eating, so has ALL his feed and medicines through a tube. He sleeps OK during the night because he has a medicine which helps sedate him a little. He is also a great cuddler, has lots of people who adore him and he brings so much light, joy and pleasure to our lives and those who love him. He is our blessing. Thank you and please enjoy the party.

It’s my turn to ask questions. Fellow parents in the special needs/disability world, how do you deal with situations like this?

And my readers who don’t have much experience of disabilities, do you have any advice? Should I just answer the questions as I do? What should I say? Should I just get Samuel, his Dad and I positioned near the buffet table so everytime anyone comes near we can busy ourselves with a nice big wedge of cake?

Oh and as for my friend, well I’m going to make arrangements to meet up with him when it is just us and our babes. Then we can have a good old gossip, a cuppa and relax. Bliss.


6 thoughts on “Party poopers

  1. My heart goes out to you – and I feel a bit ashamed myself as I’d probably be the one firing questions at you and trying to find out about Samuel. But I suppose I’d feel more ignorant if I didn’t ask about Samuel.
    Reading about your side of things makes me realise you must have to repeat Samuel’s story over and over again.
    Wish I could suggest something to help. Guess I could only say maybe get the host to let everyone know in advance of Samuel coming along, and explain his condition, asking people to please respect you and not fire questions at you (close friends would probably be happy to do this).

  2. It’s hard so hard. Adult constant statements and questions annoy me. Strangers feel they can as really personal things. Close friends ask because they care but its hard relating the latest crap to them. Mothers in the school yard are getting braver and say hello to him, but look uncomfortable when he doesnt acknowledge them, now will make comments about how well he looks.
    However I LOVE questions from children. I can’t explain why their questions don’t upset or annoy. Perhaps it’s because their questions come without a look of pity, or comments of how hard things must be. At Thea’s sports day yesterday a cute pres schooler spotted me whipping air out nates ng tube and was fascinated. What is that? Where does it go? Why does he need it? Whats that on his chair? Why has he got those head bits? What’s his name? His mother apologized and pulled him away, I said no no its good that’s he’s interested! 10 mins later he was back with more questions. All the things adults wonder but are too scared to ask. His mum clearly didn’t want her son to upset me but I see it in a far more positive light. Not everyone is healthy. Not everyone has a normal life. But that’s ok. And understanding others is always a good thing. xxx

  3. It’s a fine line isn’t it? It’s so much worse when they stare and give pitying looks and say nothing but the constant questions can be draining. I find that I too feel the need to reassure them and make them feel better. I hate it when they look like they want to cry or feel sorry for me. I try to be really blasé about things and then think they must think I’m a cold hearted cow because I can say ‘no he’ll never walk/ talk’ etc and smile like it’s great news. Maybe I just think too much about it.

    A previous commenter mentioned about getting the host to tell everyone in advance but I think Id be mortified if that happened and really feel even more like a freak show. I genuinely had a man come over to us (when Hugh was NG fed so it was a bit more obvious), fire all these questions at me and then call other people over and repeated it to them. He meant it in a nice way. Honest! He called kids over and told them how special H was and that he was God’s special child. He was, I know, trying to educate them but I felt a bit like we were in a zoo.

    I think there is probably no right way to handle it. Or wrong way. I feel sorry for the ‘other’ parents – they’re damned if they do and damned if they don’t, in some respects. If they don’t say anything at all but just look then it’s rude but if they ask too many questions it’s offensive and if they smile but look with pity then we get cross and if they look sad then that makes us even madder. They really can’t win, ha ha. I think it depends on my mood how I handle it. Sometimes though, if I’m not feeling up to it then I just make my excuses and leave or don’t go in the first place. I’ve found avoiding eye contact or getting deep in conversation with someone I do know also helps.

    Alternatively – Your speech or handing out leaflets should do the trick!!! 😀

  4. I don’t have any experience of children with special needs and don’t have ant advice for you. But, I think that through your blog you are doing a great job educating people what it is like. I know I’ve learnt a lot from you xx

  5. I do think I get how you’re feeling about this – although my girl’s disability is hidden, I would feel uncomfortable with her at large parties (hell, she feels uncomfortable herself, so it’s no wonder!!) so I’d probably only go to ones where it was family or close friends. I actually emailed all the mums in her class to let them know her diagnosis – TMI maybe, and it may not have stopped ALL the whispers at the school gate, but at least I feel now everyone knows the truth and that they can ask me directly if they want to. Doesn’t mean you shouldn’t go to any though – you do what’s right for you, and I suspect at some times you may feel stronger about it than others, so ‘go with the flow’!

    Although I know a little about special needs, I also don’t know what I’d say if I was at a party with someone with ‘obvious’ special needs – yes, it seems rude to ask for any details, but then again it seems rude to say nothing and pretend they are not there. So like one commenter put, we can’t really win – but again, you shouldn’t be worry about that, or how we feel, you just have to go with how you feel – and if you feel like being rude to someone who’s asking too much, just do it. They’ll get over it 😉

  6. It’s a difficult one isn’t it? I find it depends largely on my mood at the time. Sometimes I’m ok with answering questions and really glad folk are asking, other times not. Also tricky because you don’t want to be excluded from stuff or isolate yourselves – over the years that has been hard to deal with.

    Generally, I find humour works best. There are some great tales on our forum!

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