If you can’t say anything nice…

Dear friends and family,

Before I start writing my blog this week, I want you to know that this is the sequel to “The Ridiculous Things People Say” that I wrote back in February. It has been inspired by complete strangers. None of you have ever said (and I doubt, ever say) anything that will offend me as far as Oscar is concerned… so please don’t start panicking and wondering if you’ve said something that might feature here. After the first “Ridiculous things people say” a couple of you worried. If you have ever worried, please rest assured that I am stronger now and would pull you up on it straight away (in the nicest most possible way of course). So here goes… an account made up of quotes from random people off the streets, who feel the urge to give me their opinion or say tactless things. There are also quotes from friends who’ve asked me to include snippets of THEIR experiences with their child who happens to have DS.

Enjoy, folks… There are some corkers

Sarah

Probably one of my favourites recently, was when I took Oscar to a very well known children’s shoe shop to get him fitted for some new shoes (did I mention he’s walking now? Wooohooooo!!!! ;0) Now obviously, up until now, Oscar has only ever worn his “special” boots so it was kind of a big day in our little world. The lady seemed nice enough. She did the general pleasantries, hello, how were we doing, etc. She asked me to sit him on my lap while she measured his feet. Without even engaging Oscar in conversation, she looked past him to me and bombarded me with “So do you know how severe it is?”, “Poor thing”, “such a shame” with her bottom lip sticking out as if to say, “how awful for you”. Now, aside from the fact that this was downright rude, or one, she hadn’t even asked me his name, but two, and this is where I struggle, she was crouched down there on the floor, with fingers missing!!!!! I appreciate I may lose a few readers here for being un PC but Yes, she had stumps instead of fingers and if I’m brutally honest, she was having a right nightmare trying to take Oscar’s shoes off. I am aware I sound like a bit of a bitch here. But she was “disabled” herself!!!!!!!! Had she not experienced peoples lack of tact or understanding in the past? Had she thought that perhaps sometimes it’s best to ignore the said issue and get on with mindless chit chat? Needless to say, she got a bit of an earful from me (in the nicest possible way of course) about how it’s not like the old days and a person either has or hasn’t got DS. That they’re not labelled severe or mild. That his name’s Oscar, he’s almost 21 months and that he’s doing brilliantly.

And honestly, it took everything in my power not to take Oscar’s shoe out of her hand and undo the laces myself. It would have been a hell of a lot quicker and less painful to watch… But of course I didn’t. I have tact… And I wouldn’t have wanted to hurt her feelings. Enough said.

A few weeks ago I took Oscar along with me to get Alfie weighed at the local clinic. Oscar had decided he wanted to get out of the buggy while we waited and he was exploring. There were quite a few “new mums” already gathered there with their newborns and we were all chatting. I had Oscar in my sight the whole time, when I noticed that a man had started talking to him. How nice I thought and I smiled in acknowledgement that I’d seen. He then, in front of the whole room shouted across to me, “Has he got downs?” in the biggest, most booming voice imaginable. I retorted with, “His name’s Oscar and yes, he has Down syndrome”, “Thought so” was his response. Was there any need? I mean I know he was stating the obvious. But really? In front of a whole crowd of people. Had I felt the need to shout over everyone, “Ummmmmm… Are you fat?” (Which he was) NO I DID NOT!!!! Seriously, some people, hey?

Now, this next example is a particularly delightful one. The other day, one of Oscar’s friends was in a newsagents with her daddy, when the person behind the counter said, “Is it curable?” Yep. She ACTUALLY said that. Can you believe it? I mean, I might not be the brightest bulb in the box myself but is it curable? Come. On. Guys! This is the year 2014 and people are asking that question for real?!? Baffling.

I was talking to another mummy of a little boy who happens to have DS recently, who said something someone had said to her, had caught her off guard. She had had to go on a recreational visit with her son as his 1;1 and was staying over night. As he was more than capable of staying in the dorm with his friends (typical), this mummy was staying in a room with the teacher accompanying the kids and her sister, who had come along as a chaperone. The sister was a sonographer. Obviously that night they get talking and the sonographer turns round and asks, “did you know you were having a downs?” Hhhhhmmmm… This person, whom I’m sure at some point in her career has had to tell expectant parents or indeed will in the future, that they’re expecting a child with DS? Do we think that “having a downs” is an appropriate use of terminology? I despair. Also on that trip, one of the other chaperones announced to this mummy “I don’t know how you do it… I’d NEVER have a disabled child”. Right? ‘Im wondering if she thought this particular mummy had a choice? I’m pretty sure in her case, as it was in mine, that we weren’t actually given a choice. We got what we were given. I’m guessing she meant she wouldn’t be able to cope which perhaps makes it marginally better… But marginally. I honestly think some people literally don’t think before they speak.

This mummy was also told on this trip, that her son was lucky to have the typical children as friends. I was shocked that she felt like this. I think you’ll find the mere fact that he has them as friends is testament to the fact that children obviously don’t see him as any different and even if they did, except him for the incredible little boy he is. HE’S not lucky to have them. By the same token, I’m often told by friends of mine (ok friends, here’s where some of you feature ;0), that they’re pleased that their child or children are friends of Oscar’s. That’s lovely but I hope it’s because they love Oscar, rather than him being the token disabled child in their lives. I want them to love him for him. A little person in his own right.

I always remember a guy that I use to go to school with wrote a really derogatory joke on Facebook around the time that Oscar was born. It basically implied that people with DS were ugly. Around this time I hadn’t put anything about the fact that Oz had DS on the site, as I found it too hard. Of course keeping the DS thing under wraps didn’t last long. Now we celebrate it. Needless to say, 21 months on… I have never seen another joke at the expense of people with DS on his page. If I did, I would pounce on it with every ounce of my being. Watch out, buster!!!

Another friend of mine who has an older child with DS said that when her little girl was about 3, they’d regularly go into the local stationery shop. She said the lady in there was lovely and often used to talk to them. This one particular day she said they went in and the lady asked “does she want a sticker?” What a lot of people do (much like the woman in the shoe shop)is talk to the parents rather than addressing the child herself, so my friend turned to her daughter and said “would you like a sticker darling?” The little girl replied, “yes please”, to which the lady said “oh, she’s obviously high functioning.” My friend went home that night and laughed. Was it the fact that her daughter had been able to say “yes please” that meant that she thought she was high functioning?!? Well, Thank goodness the stationery shop worker thought so, it must be true ;0)

I have also recently heard of a young family out with their new baby (who happens to have DS) who were in a coffee shop. There was a group of ladies sat at the table opposite who were staring and then they heard one of them say, “What’s wrong with her?” This broke my heart for them. I have obviously encountered people staring at Oscar and that’s ok, as long as they’re staring in a good way. I have also heard a couple of people comment on the fact that he has DS and you know what, that’s ok too. What’s not, is if they’re in any way nasty.

Chris and I have talked at length about this blog and whether it’s actually a good idea to put Oscar “out there” on the internet. We are well aware that people can be cruel and one day someone’s going to say something about a photo I post or blog I write, that we’re not going to want to see. I know they’ll be the ignorant one and I shouldn’t care what they think, but sometimes people’s cruel words run deep. I once looked online at a pic of a baby with DS and there were so many positive wonderful comments. Amongst them though, there were a few awful ones, that I wished I hadn’t had read. I clicked on their profile to see what type of person would say such horrible vile things and of course, it was some undesirable… but my god, it hurts. That could so easily be our Oscar.

I often recall the time that I found out a close friend had a child with DS, long before Oscar was born and I felt bad for her. I remember feeling sorry for her and thought she must have felt really disappointed. It’s now however I know, that disappointment will not, for one second, feature in her life (or mine for that matter). How very wrong I was to feel that way towards her.

I’ve said it before but for the most part and I say this with confidence, Oscar and I are met with the most amazing outpouring of love from both people we know and complete strangers. I have always been touched by how incredible people are that we’ve never met before. They take the time to talk to him, to me and it’s been just lovely. I do think it can be a generational thing, in that it seems to be the older generation that seem to put their feet in it! (Not always, sometimes it’s the ill educated.) A few times I’ve had elderly people come over to me and put their hand on mine and say, “everything’s going to be ok, you know.” I often wonder if they had to give up their child with DS to an institution back in the day and see my child full of all this hope and promise for the future. I do hope they take comfort from him.

If I ever get worried that I may be subjecting Oscar to horrible people on the internet, I remember my reasonings for writing this blog. To help others, to help me… And to share the truths behind having him in our lives. The good times far, far outweigh the bad times. Sure, people say some ridiculous things but for the most part, people love to love. I’m not meaning to exploit Oscar in anyway, but I hope that in people seeing his achievements (albeit slow and steady achievements) and that they see he’s doing just great. I think before I had him I might have said some stupid things. I don’t think I would have been as ignorant as some, but I’m certainly not perfect.

A lovely friend of mine said the other day, she’d like to see the world through her daughters eyes and that more people should. Her life is black and white. If that means being the first up on the dance floor at a wedding and the last one off, because she’s having the most amazing time ever then so be it… That’s what she’ll do. If her daughter wants to put One Direction on in her bedroom and dance because she feels like it, then she will. Life is THAT beautiful.

I have always said that who wants to lead that boring, typical, mundane life. Sure, people are gonna say some silly things, we’re ready for them, always with polite, well educated responses, I hope. And I for one can’t wait til Oscar’s old enough to dance at a wedding. Chris and I have always loved a good dance off… So any excuse. Bring it on.

* The pics this week have no relevance to the blog. They’re just some of my favourites of my little man… Just because I can ;0)

2 comments

  1. oakley sun glasses   •  

    Hmm it appears like your blog ate my first comment (it was extremely long) so I guess I’ll just sum it up what I had written and say, I’m thoroughly enjoying your blog. I too am an aspiring blog writer but I’m still new to the whole thing. Do you have any tips and hints for first-time blog writers? I’d really appreciate it.

  2. Mrs Donna Giles   •  

    This has made me frown & smile. We too have had the ‘talk to parent / carer problem’, although seems to be improving now they are older.
    Your Oscar is v cute – I remember when mine were cute *sigh*

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