World Down’s Syndrome Day 2017

Good morning! Just a quick post to mark World Down’s Syndrome Day 2017. We are busy planning a move, I’m job hunting, both kids are running around like crazies and my mum is ill. So the blog is suffering a little… but I wanted to mark WDSD with a little note.

Audrey is still surprising us everyday, her vocabulary is broader, her stroppiness is increasing, her need for independence (“I want to walk!”) and her loveliness never stops. She is an excellent big sister, but is not so inclined to share toys… but will share a cuddle. Rex looks to her for guidance, he is learning so much because of her. I certainly never thought I’d say this, but our lives are richer and happier with Down’s Syndrome in it. Fact.

So there you are, just be aware; Down’s Syndrome isn’t scary or sad. It’s pretty cool actually.

I missed our local T21 gathering to celebrate (on Sunday), in favour of a mums-only trip to see Beauty and the Beast! But the kids had fun with Daddy and Bibi and here is Audrey enjoying a bit of soft play…

Swear


I’m pleased to say that in our household, the “C-word” is chocolate. Unfortunately the “F-word” is the rudey swear that you think it is. Yes, Audrey has picked up some naughty words.

It wasn’t very long ago that I was so proud of Audrey’s main repeat phrases (“Lovely!”, “Nice”, “You’re welcome”, “Fank you sooo much” etc), but then Rex came along and didn’t really sleep. I think that’s when my stress levels were high and my potty mouth increased… perfect timing as Audrey’s vocabulary grew! And just like that, she started muttering “for God’s sake!” (With an embarrassing amount of ‘tude to go with it). And as I thrashed that one out of the repertoire with lots of repeating (gently, whispered like a kind vicar’s wife) “for goodness sake”, another one crept in… the dreaded “FFS!”! Eek. 

The little minx was picking up on our reactions and started using it with a side glance, waiting for our response. Cheeky monkey! 

Having picked a local church school for her, I was growing concerned. But I also knew that if we worked very hard to be clean, the phrase would drift out of her regular chat and be replaced by something else. I’m pretty sure we are now weeks from a “FFS”, we’ve heard some other random negative words here and there, but mostly the little peach is coming out with gems that make me proud; 
“Mummy making me happy!”

“Hmmm I fink it’s actually lellow”

“Daddy’s at work”

“What’ve you got there?”

“Audrey have some?”

And although I do not want to hear her swearing, I’m grateful for every word she says, she is excelling in her communication and I’m extremely proud of her. Our little chatterbox!

Let’s Talk About Rex, Baby


Typical kids. No exclamation mark, no tut or eye roll; I’m talking about “normal” children (what I would have called them before learning comfortable language for those of us with “special” children), they just “get on”. They just “do”. It’s amazing and annoying at the same time.

Before 6 months Rex was commando crawling, at 6 months he had mastered proper crawling. At 7 months he could pull to stand. At around 8 months he was cruising the furniture. At 9 months he could easily walk with a walker or even the lightweight toy buggy. At 10 months he took his first independent steps, said “Da Da” at his daddy and signed “milk” before bedtime.

At 10 months Audrey could roll, sit with support and er, not sure if she had mastered anything else by then… She was still in 3-6 months clothing bless her. Ahh, but she was sleeping through! Take that Rex!

I’m proud of both my children. In many ways I’m more proud of Audrey because everything she learns she learns after a lot of hard work. And so it feels like Rex is privileged somehow, which I know is ridiculous. But wow, his walking. He takes a few steps, we celebrate and then he keeps taking those steps. He needs no encouragement and there’s no complaining, because he wants to walk, he is good at it, so he likes doing it.

So here we are at the 12 month mark – Happy Birthday Rexy!

You walk. You’ve already fed yourself with a spoon, signed:

Milk

More

Blueberries

Banana

Audrey

Mummy

Daddy

Finished

Er, I think that’s it, but wow.

You’ve been a challenge (into EVERYTHING),  but you are a beautiful boy and I just know that once you stop pinching and hair pulling, you and Audrey will be best buds.

You can dance like a good ‘un.

You love tickles.

You’ve got 4 teeth on the top and 3 on the bottom.

Actually, you get a very sore bottom. I’m looking into creams… oh and you always play with your winky when I change your nappy… can you tell I’m embarrassing you on purpose now?

You have already hinted at tantrums (not something I’m used to), you don’t like giving up toys or sitting in a still buggy. You don’t like having your face wiped and you get frustrated by toys.

We love you Rex.

A belated hello to 2017!

2016; quite a year.

It started well, with a lovely bit of maternity leave when Audrey napped and on nursery days I could go to the cinema or sit and drink hot chocolate alone. Or nap. Or stare into space. Basically just “be” without a child around.

Then February came; Rex arrived! He turned our lives completely upside down and took me from tired mummy to completely-shattered-and-almost-broken-mummy.

Both my children took their first independent steps! Audrey in October, aged 3 and 3 months, Rex in December aged 10 months and 4 days. 

I’ve was so very low at times last year and sometimes too focussed on that. I am looking forward to feeling more positive, as Rex sleeps more and they both become more independent. 

I have been wishing away the baby days, but please be assured I have also taken time to appreciate Rex’s delicious baby head, his tiny toes, they way he looks at me whilst having his milk, they way he needs a cuddle after a fall… all of his good baby stuff I will remember, I know I’ll miss it, but I am so excited about this summer. Two walking children!

Rex has started saying “Dada” more often and even aimed it at Ted, so we are taking that as his first word. I’m probably more excited that he has signed “milk” and “more”. We love Makaton.

In the meantime, Audrey’s talking is coming along fantastically and she surprises every day with new words and clever phrases. “Audrey’s so happy”, “Rex, what’s wrong? D’you need a duddle?” … as I type this she is playing with a doll saying “You done a wee wee? Do a wee wee in the potty? Say goodbye to everyone”. She’s a star.

Scarily 2017 would be the year Audrey goes to school, but we have made the decision to defer her until next year, giving her extra time to be potty trained, be a strong walker and generally close the gap between her and her peers. We have picked a local mainstream school and fee very strongly that Audrey will thrive there. She loves learning through play, she is a goody-two-shoes and I think she will be popular at primary school.

Anyway, let’s get 2017 out of the way first. I need to find a job so that could lead me down a new path. And once Rex turns a corner and learns a bit about being gentle and sharing, he and Audrey will be great playmates.

Cheers!
My two crazies.

Merry Christmas 2016

Merry Christmas everyone!


We love Christmas in our household and I’m so proud to pass some of my enthusiasm onto Audrey. She can say and sign lots of Christmas words, sing and sign Christmas songs and she loves Father Christmas. We’ve watched lots of Christmas films these last few days and Audrey has picked up a Santa hat, put it on and said “Christmas hat!” enthusiastically several times. I think she’s clocked there’s more chocolate around… she can tell this is a fun time of year.

Rex obviously has no clue, but has been forced to wear festive knitwear and does enjoy a dance to Rudolph the Red Nosed Reindeer. In fact, Rex just generally likes a boogie.

What a year! Having a second child turned out world upside down and has basically left us permanently exhausted, confused, messy and shouty (“No Rex, leave that! Stop that Rex, be gentle!” Etc etc). We’ve come a long way and the little guy is 10 months old on Boxing Day! Crazy.

Merry Christmas everyone, have a lovely festive season! X

The Wobbles

I spend a lot of my time thinking about Audrey and how much I love her. How great she is. How she has exceeded expectations and challenged my world view and my view of people with Down’s Syndrome. But sometimes I do still have a wobble. I do let negative thoughts creep in and I do worry.

The other week I took Audrey for her thyroid blood test. It’s not a pleasant outing, I know they are going to hurt her (or at least make her uncomfortable) when they take the blood. So it’s a time when I think “it sucks that we need to do this, it sucks that Audrey has Down’s Syndrome”. And so I wobbled. I felt angry about the Down’s Syndrome. 

Whilst we were there, a lady walked by with her teenage daughter. They were both slim, well dressed and they seemed to get on really well. At the time, Audrey was arguing with me over finishing her sandwich. I felt another wobble… that we would never be those two “perfect” mother and daughter types. Such a silly, shallow thought. But I felt sad she wouldn’t be this elegant model-like teenager, making boys heads turn. And as I write this I recognise how unimportant it is that she is “pretty” by typical standards and that boys fancy her. I guess it’s sometimes more that I worry her condition robs her of certain standard life experiences. 

We filled out more forms for disability living allowance, as we can get a higher rate of Audrey isn’t walking. Initially I felt it was pointless – she is walking now. But on further discussion I realised that walking across the living room and then landing on your bum is not walking like a usual 3 and a half year old. She can’t walk down the street to the shops, she can’t walk to the car and climb into her seat. We have made a massive leap forward with the walking, but we still have far to go and that’s annoying!

Sometimes when I’m talking to other parents and the subject turns to when our kids grow up and become difficult teenagers/go to university/have kids/end up looking after us… I feel a little pang inside. I wonder if they are thinking “Yeah, but not Audrey”, I guess I worry about their negative thoughts as much as I worry about my own.

I wanted to post about this to be honest about the fact that I’m not always happy and steady on our path, sometimes I do fret about Audrey’s future. No matter how secure and content I feel about her, it doesn’t change the fact that we face challenges that typical families don’t.

I have to remind myself that nobody really knows what the future holds. No one can be truly secure in what they will become and how their/their children’s lives will pan out. It’s freeing to think that and try to “let go” and continue with the positivity – that Audrey can only get more fabulous. 

Audrey and Rex, December 2016

Stuff and things 11

As I am struggling to get time to blog, I’m just posting a quick update of what’s going on with us.

So let’s see…

Rex is nine months old. He can walk around the coffee table at an incredible pace, he loves to stand (with support) and I suspect he will be taking his first independent steps in no time. He grabs  and pinches and pulls and bashes and bangs… He is active and strong! We are really getting a varied parenting experience. His nights are… Random. Best case, he sleeps 6.45pm-4.30am, has a bottle and then goes back to seep until 7am. Worst case, he wakes at 9.30pm, midnight, 2.30am, 4.30am and wakes for the day at 5.30am. The second scenario is breaking me.

Audrey is walking more and more. I’m a little frustrated she’s not just striding down the street, but she will get there. She asks to go walking when we are sat in cafes etc and does laps around the room. Her speech is evolving at pace – she amazes every day with new words and phrases.

Rex enjoys eating and is a blueberry fan like his sister. Audrey is getting fussier and fussier (just like me as a child), so we are going to have to work on her food variety. Vegetables have to be sneaky!

I love Christmas and so the build up has began. Audrey will definitely appreciate it a bit more this year. Rex… Well maybe he’ll get it next year. At the moment I think the wrapping paper will be more of interest than the pressies.