That's not helpful, but at least you meant well...

I've learnt a lot since I found out Daniel had Down Syndrome. I'd like to think I was fairly sensitive, but there were things I would have said then but wouldn't now. There are also things people say to me that are difficult to listen to, especially on a rough day, and I need to have a rant! 

1 - Using people first language

Before I would've thought it was a very subtle difference between 'Down Syndrome child' and 'child with Down Syndrome', now I find myself flinch when people say 'Down Syndrome child' or 'Down's man'. Daniel isn't a 'Down's baby', he is Daniel and he just happens to have Down Syndrome. There's a wonderful campaign called 'Lose the Label' at the moment featuring people with Down Syndrome with the phrase: 

I am Daniel

I have Down Syndrome

I am not Down Syndrome

I am Daniel

written to the side of their name. It's wonderful to see all these beautiful children and young people with such a positive message promoting this person first language. My son isn't a Down's, he's Daniel. 

2 - Stereotypes

Ugh, I get so fed up with these. I honestly barely have the energy to even try and counter them now, I just smile. Stereotypes include (I bet you've said one of these to a parent of a child with Down Syndrome...) "They're so loving", "They're such happy people", "They're the life and soul of a party" and "Oh, they love music". Stereotypes arise for a reason, I get that there is therefore probably a grain of truth behind them. Certainly, as I do say to people on the days I can be bothered to say something back, we hoped Daniel would change people's initial response of saying something that is just a stereotype but unfortunately, he is very happy and he does love music so at the current rate, he's just reinforcing them! 

Anyway, we don't jump straight in with stereotypes with other people (You're dating a Scotsman? Oh, well they have such lovely kilts), and I know people are trying to be positive but it gets weary.

3 - Special people get special babies

FALSE! I don't feel particularly special. I feel blessed to have Daniel as my son, but I don't think I got him because I'm special. I'll tell you why this statement is completely wrong though... Abortion statistics. Various scientifically researched figures exist, with around 92% of women with an ante-natal diagnosis of Down Syndrome in the UK and 95% in the USA choosing to abort their babies. Over 9 in 10 of these 'special' people chose to kill their baby. Again, I know this is probably said to be an encouragement to the parent and believe me there are days I need encouraged, but this is not the way to give me a boost!

4 - Anedotes about typically developing children 

This is the one that I come across most often and is the easiest to cope with, but when I face this maybe four or five times in one day, I need a break. The conversation normally goes like this:

"How's Daniel?"

"He's good thanks. It feels like a few things are starting to click with him recently, he has started clapping his hands"

"You see, they all do things in their own time/there is such a range for them doing things like that. My child was clapping at 6 months, but my friend's child was 9 months by the time they started clapping their hands!"

A few things about this are tough to listen to. Firstly, Daniel didn't just do it in his own time. Typical babies absorb things that go on around them and don't need to be taught to point/clap/crawl, it's just instinctive. Daniel gets a lot of early intervention therapies to get him to achieve these milestones, and he still takes months and months of repetition and encouragement to learn them. He still can't crawl, we can get him to isolate his index finger but can't point (and doesn't understand what a point would mean anyway) although he has now cracked clapping! I don't mind that that's where he is, but it isn't a case of him just doing it in his own time. Secondly, an anecdote about a typically developing child often only serves to remind me of the amount of delay we face. As Daniel is my first child, I am not particularly tuned in to what babies do when, we work on a "What skill are we trying to refine, and what step is next?" basis for each of his areas of development. When people then try and give me an encouraging story about how babies vary, invariably, the later developing baby will still be younger than Daniel (plus they weren't getting the early intervention therapy to achieve it in the first place). I appreciate the stories at some level, just like I can share excitement when friends' babies fly past Daniel with their achievements, it's just that sometimes these things can give a large dose of reality I otherwise can avoid. 

I'm sure I'll press 'post' on this and then remember another thing, but this is good therapy for me just to get some of this off my chest!