You Can Stare. Just as Long as You Look

One of the great pleasures of being on holiday is experiencing different places and being out of your usual dull old routine. But when you have a child with additional needs, being out of your routine presents certain challenges. And it’s not only because children like Boo often thrive on schedules.

No: it’s also because when we’re in our usual environment, Boo’s difference is old news. In the school playground, hospital, local library, I might get asked how he’s doing, but I don’t often get asked now what’s wrong him. Well, at least not as often as I used to.

On holiday … well Boo is going to stick out like a sore thumb. Few people have the nerve, I mean guts, no, I mean nerve, to say what they think when they see Boo. Most just stare.

There are lots of reasons to do this, of course. Mostly it’s because he is extremely cute. He has huge, piercing blue eyes, a fabulous smile and an infectious laugh. Then there’s his glasses  (when we can keep them on his face, that is). These add to the cute factor, especially when he does his baby Professor, I’m going to look at you over the top of my specs face.

But the glasses are often the first sign of difference people notice. A one-and-a-bit-year-old doesn’t usually wear glasses. But hang on a minute. Is he a one-and-a-bit-year-old? Because if he is, why does his trunk look like it’s made of marshmallow. Oh look he can’t sit. Or crawl. What’s wrong with him? Are his parents just crap or is there really something wrong with him?

And then the looks morph. To curiosity. Or worry on our behalf. Or pity. Or judgement. Or prejudice.

I’ve had some time to get used to this, but The Grumposaur spends much less time out and about with Boo and hasn’t. He experienced it recently at our local park, where we had to hold Boo in the baby swing or he’d flop around like a teddy bear. The Grumposaur found it so hard. He said he didn’t ever want to take him out again. To protect him. At home we can pretend things are normal. Out, we can’t.

I find the stares difficult and I too want to protect Boo, not so much from others’ ignorance and stupidity because I think we can deal with that, but I want to protect him from internalising an impression of difference or otherness that could wound his sense of self.

At the same time, though, I don’t want to retreat or to wrap him in cotton wool. I want to show him off, to shout how proud I am of him.

And actually I don’t mind people looking at him, so long as they see him for what he is and challenge their perceptions of prematurity and disability.

Here’s what I wish others might notice:

1) that Boo is the world’s happiest baby/toddler who doesn’t toddle

2) that he is more determined than most people you will ever meet

3) that the things he can do (hold his head, manipulate objects, reach and grab) are  small miracles and none of these things came naturally to him

4) that he has been through some of the most awful experiences you can imagine (prematurity, sepsis, meningitis, massive brain bleeds, infantile spasms, the appalling side effects of very high-dose steroid use) but don’t tell him as he doesn’t seem to know he should be miserable

5) that he loves his family and is loved by them more than you can imagine

6) that he was premature and has disabilities but he is not these things

7) that neither he nor we need pity, but if you want to spread awareness of prematurity or special needs or just treat Boo kindly then we will be fast friends and I will be forever grateful

8) that Boo isn’t defined by his difference but by the fact that he is amazing.

So stare if you like, just be sure to look at him.

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24 thoughts on “You Can Stare. Just as Long as You Look

  1. itssmallsworld

    Oh goodness this made me cry as this is exactly us. I so hope you guys have a brilliant time as you all deserve it! It is just tiring constantly being patient and educating other people xx

    Reply
  2. gemgemmum

    Here here! I would rather be asked than have pitying stares any day!

    I love it – he doesn’t know he should be miserable 🙂 neither he should, I imagine a cute boy with big blue eyes and yes, glasses and blonde hair when I think of boo.

    Reply
  3. pinkoddy

    We are not in the same boat but I can so relate to this – especially the fact that my husband is often out with our son. When well meaning people give advice he’s not been brought up to put them straight, but rather to say thank you – which frustrates me.

    I hope you’ve not had too many stares and I’m glad he’s so happy, and has such an amazing family.

    Reply
  4. Jaime Oliver

    awww honey im sat in tears! i am sending you massive hugs and i hope these ill-informed idiotic people never have to deal with what you guys do as they certainly wouldn’t have the strength and determination you guys have!

    P.s I think tots with glasses are the most cutest thing ever!! big hugs

    Reply
  5. Brigid

    I am so glad I found you on the Love that Max link-up (I link up there, too!). What an absolutely beautiful post. “…but I want to protect him from internalising an impression of difference or otherness that could wound his sense of self.” Yes! THIS. What a powerful statement.
    Thank you for this.
    Brigid
    thepinkrollercoaster.com

    Reply
  6. Love Dexter

    Oh my goodness!! You are Us! Same Same. xx We asked facebook friends (who no longer stare and question… just love now) to design some shirts for Dexter. Check ’em out, if you like. We went with “Don’t stare, Just care”, which was designed by a 14 year old. http://bit.ly/Dexshirt Happy Holidays!

    Reply
  7. Verily Victoria Vocalises

    I can relate to this on behalf on my sister. My nephew has a rare chromosome disorder and when they went on holiday she had to tell them he was disabled. There was no section for his disability so they told her to say that he was downs syndrome. This is the least of what has happened. No one understands…not unless they are directly affected. I really sympathise and understand. You are a great Mum. Thank you for linking to PoCoLo x

    Reply
    1. mrboosmum Post author

      Thanks so much, lovely. I so feel for your sister. It can be so hard. I just keep telling myself most people mean very well. Why would they know about this stuff? In a way, I’m glad they don’t have to.

      Reply
  8. That boy of mine

    So get this post. I often chicken out and say he has heart problems so has been ill as feels more socially acceptable than a rare chromosomal disorder. Keep doing what you are doing – he is a lucky boy.

    Reply
    1. mrboosmum Post author

      Sorry it’s taken a while to respond, lovely. The holiday and all… I understand that. Honestly, if and when we ever get Boo’s test results it will be a relief to be able to say he has CP (I honestly think he has) so I can stop saying, he was premature and has brain damage. Why do we need labels so badly, I wonder…?

      Reply
    1. mrboosmum Post author

      That’s one of the nicest comments I’ve had. Thank you. He is amazing. Whether I’m wise of not, I’m not sure, but I’m working on it!

      Reply
  9. StephsTwoGirls

    I so get the thought of staying in, although for different reasons with our girl – but it’s all about that same thing, difference. I honestly wouldn’t mind anybody asking me why she’s different – just as long as it’s not done in a judgemental way, please. But I could never stand the idea of stares or whispers behind my back, which is really why I came out blogging in the first place. You’re doing a great job, spreading awareness bit by bit. Everyone is different actually, just a lot of people share more similarities, but that doesn’t make them more interesting 🙂

    Reply
    1. mrboosmum Post author

      Sorry to have taken an age to reply. I’ve been on holiday.

      I couldn’t agree more with your comment. I love to talk about Boo and want to tell anyone who’s interested how amazing he is. By the way, your comment prompted me to set up an email subscription to your blog, which I’ve been meaning to do for ages. So thank you!

      Reply
  10. P

    As always so beautifully stated. I hope to meet you all one day so I can finally see the amazing Boo and his equally amazing family!

    Reply
    1. mrboosmum Post author

      Thank you. Well I’m a big fan of yours too, as I hope you know. It would be totally amazing to meet you and V one day. I hope we can make that happen!

      Reply
  11. Lulastic

    Ah, this is so beautiful. It is awesome that you err on the side of good intention- I am sure this is the case; people are noticing difference but not judging or doing so with cruel eyes. I hope you don’t have to encounter cruel stares. Thanks you for sharing- came via LAB x

    Reply
  12. allyouneedisloveandcake

    I can’t even begin to imagine how hard it is facing prejudice like this on a regular basis, but Boo sounds like such a gorgeous little boy and a delight to be around – you are right to be so proud of him, the others should be ashamed x

    Reply
  13. Hayley

    I can’t imagine how hard it is dealing with stares in that context. I often get stares and comments around me when I’m babywearing or pushing my stokke and I always find that a bit odd but must be hard when its that bit more personal.

    Reply
  14. Keynko (@Keynko)

    Awesome post! You should print it out and hand it out to people who stare – make them see what you see! He sounds like joy and you sound like amazing parents – screw the rest of them!

    Reply
  15. tharar

    People stare at Abby a lot out of pity, worry or curiosity. I also get questions and advice from well meaning strangers. Just yesterday I was at the park with Abby when a lady gave me advice. We played for a while, and then Abby got tired. Abby was sitting in my lap by the time the woman approached us.

    After asking me questions, she saw Abby was in my lap and said Abby should not sit in my lap, she should be sitting independently at one year old. She also said I was a terrible mama for not teaching her to sit alone. I wanted to punch her hard. Luckily I just had a cup of juice so I laughed at her instead. Still it was a close call…

    Reply

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