Joining Team Sam

 

Let me introduce Zoe, mum to Sam and writer of Tricky Customer, a blog I’ve come to enjoy over the past month.

My favourite part of blogging is getting to know so many amazing people. Zoe is one of them.

Not just because she and her husband are inspirational parents, caring for their son who has a condition called ARX

But because she writes with such honesty and really makes me think.

And today is no different, as she explains how a birthday party invitation holds very different emotions for her than for most parents.

Over to you Zoe….

 

 

 

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 won’t stand around staring at Samuel having his lunch through his tube (there have 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 won’t 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 co-ordination 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.

 

Pop over to Tricky Customer to read more from Zoe, Sam and their family.

And if you like what you read, why not join Team Sam?

I know I am.