A belated hello to 2017!

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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.

Great or managed expectations?

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I have a question for mothers of children with Down’s Syndrome; is knowledge power? Do you prepare for the worst or simply expect the best?

I follow a lot of families with the extra chromosome in the mix. I see the highs and lows of parenting (full stop). I also see the highs and lows of parenting a child with special needs.

Sometimes I see stuff that scares me. I start analysing Audrey, or worse; start Googling.

Something that has played on my mind recently is “sensory overload”… Children with DS who are unable to cope in noisy/busy environments. Concerts. Parades. Carnivals. Festivals. Stuff that’s fun. 

We’ve had a taste of Audrey reacting negatively to situations like this when she got upset at the (very noisy) Children’s Parade and sometimes she complains when things are “too loud”. The thing is, lots of kids might get upset by a loud parade, but because she has Down’s Syndrome, it’s the condition that gets the blame. 

We went to a pirate birthday party and Audrey was especially clingy and wouldn’t eat her food (even though chocolate, yoghurt and fruit were on offer – her faves!). She only really relaxed when all the kids went outside to hit a piƱata and we stayed inside and “Let it Go” started playing. 

And then there’s the family-friendly gig we went to (with ear defenders) and she just stared with her mouth open the whole time. She at least clapped after every song, but for Audrey, our little groover, it was odd. She usually goes mad for live music, but instead she looked more “special needs” than I had ever seen her.

And I feel it’s a double edged sword – everyone either assuming she’s gentle/placid/agreeable (she’s not always like that by the way) because of the Down’s Syndrome….

Or when she is moaning or whining like a typical 3 year old would, I feel worried about people thinking it’s a kid with special needs losing the plot. That they are looking at me and thinking “Poor woman, I bet that kid is hard work”. If she were a typical child, it would just be that Audrey is having a standard tantrum.

Recently it was bonfire night and we went to a friend’s house for fireworks. We did forget the ear defenders, but to be honest, I don’t think they would have made much difference- fireworks set off in a small garden are and absolute assault on the senses! Audrey didn’t like them at all and Rex wasn’t keen either, in fact Audrey’s 2 year old friend came inside to escape too. But one of our friends was very much singling out Audrey as having a problem with them, you could hear from her tone she was suggesting that it’s an issue for Audrey because she has Down’s Syndrome. And that grates to be honest. It’s frustrating that we can’t escape her syndrome sometimes.

I guess I used to assume everything was just Audrey being Audrey, but as time goes on, I’m wondering; should I prepare for stuff that kids with Down’s Syndrome typically encounter? Maybe I should stop fighting it and accept that DS makes her more prone to being a certain way?

I read a post from a local lady, who was upset because she cannot leave the house alone with her 12 year old son (who has DS); it’s too hard – he runs off. It’s dangerous because he runs across busy roads and she can’t keep up. Other mums commented to say that were in the same boat, one even described her son as like “Iron Man” – she can no longer cope with his strength. I just tortured myself by reading the whole thread – kids that throw things, sit down and refuse to move, don’t sleep until the early hours…

I look at Audrey, our gentle, usually careful little girl and cannot imagine her becoming an out of control runner, toy thrower or rubbish sleeper… But I worry about it regardless. Mostly I see a bright future of cuddles and fun with Audrey, but the worry creeps in sometimes. It’s natural and it’s enhanced when a condition gives you clues as to how human might be. 

And as she grows, she learns and she starts pushing boundaries, so I’m getting used to Audrey causing more trouble than she used to and not being that placid agreeable creature that some people assume she is. So I guess I’ll just try to go with the flow and see how she turns out… Much like with her brother, who has no “syndrome” (that we know of), but is proving to be an active and tiring baby to look after! So do I project and assume he’ll always be hard work?!! No! Let’s just see what happens…!

A World Without Down’s Syndrome

Daddy holding his tiny baby daughter

When Audrey was born, my brother Googled to find out if any celebrities had a child with Down’s Syndrome… and he found Sally Phillips. It was very thoughtful of him to try and make it “acceptable” for me – appealing to my (shameful) interest in celebrities. At the time I read an interview with her talking about her son Olly and it was very positive. But I couldn’t find more than that one interview and I guess I wondered why she didn’t do more. But now I see that it’s a really big deal to “put yourself out there”. 
I have wanted to write about Sally’s documentary (“A World Without Down’s Syndrome”) for weeks, but I’ve found it incredibly hard. The lead up was a draining and consuming time. I felt anxious and stressed about being involved, about making a difference. So much positive and negative feedback, so much going on… And yet I know that this was just for those of us with an eye on the subject. For many, the film may have passed by unnoticed. 

But not me. I was watching it approach slowly, following a behind-the-scenes Facebook group that was prepping for press and publicity around it. I had planned to catch it at my convenience on iplayer, but after watching the beginning, I had to stay up and watch it. I was crying within seconds of it starting!

I was so desperate to write about it, yet my thoughts sort of ran dry. So many reviews. So many reactions. It’s been tiring processing it all. It matters to me – that people would watch it and love it, watch it and learn. But I appreciate why many thought Sally wasn’t the right person to make it – she comes from a biased perspective. However it needed to be made and it needed that positive skew. That was the point – communicating the positive side to having a child with Down’s Syndrome – balance against the negative information and medical condition list you are given at diagnosis. And also questioning a society where we actively look to rid the world of people who are different. Someone has decided that this is a wholly negative condition and therefore it’s worth screening for accurately.

If you watched the film and took it the wrong way (maybe thinking it was anti- pro chioice, judgy or preachy? Maybe thinking it sugar-coated life with a child with special needs?) please be assured that wasn’t the aim. It was a truth, it was Sally’s truth.

And just as Sally shared her truth, I share mine. Audrey hasn’t needed lots of medication or operations. She was on oxygen for the first 6 months of her life because she needed a little help breathing in deep sleep. She needs glasses because she is long sighted and (like me at her age), she has a lazy eye (aka squint). She has low muscle tone which is indeed a bugger and is making it harder for her to walk, but it also means she can practice yoga like a pro (like her Great-Grandmother, Emily, aka the Filleted Lady!). She lacks strength in some areas, but is amazing in others. She is basically a human being, perfect and flawed…yep, she is one of us.

Trying to create a world of perfect humans scares me. It also scares me that the very same brother who found Sally Phillips Googling famous people linked to DS, thinks that it’s a good thing to rid the world of the condition. Yes he said that. How can he of all people not get it? I guess it’s a common view that the world would be a better place without disability. Again, I feel I have too much to say on that subject so I’m struggling to blog about it. But clearly, a world of varied strengths and weaknesses, of light and dark; that’s a better world than one of “perfection”. I can’t even say for sure what perfection is. I had a lazy eye as a child, my sister was diagnosed with MS at the age of 40 – are we so flawed we shouldn’t have been granted life? Eek, what a debate this could be…

My hope is that people simply think about people with Down’s Syndrome as that – people. Understand that they contribute to the world we live in and bring happiness to their families. I’m not a religious pro-lifer, but I feel very blessed to have Audrey. Our lives are richer and happier for having her in it and she’s about as close to perfection as I could ever imagine.

#worldWITHdowns

 

We’ve come a long way, babies

I have a tendency to project. Always wanting to be at the next stage of life, always worrying about what’s next, definitely struggling to live in the now.

Today I sat with Audrey whilst she fed herself a yoghurt and her younger brother napped upstairs in his cot. I took a breath and marvelled at where I sat, how far we have come.

In Rex’s tiny speck of a lifetime (7 and a half months), he has gone from only sleeping in the sling or on me at night, to sleeping in a buggy, cot or sling, sleeping at night (in his Sleepyhead) in a cot from around 7pm to 4 or 5am. He sometimes even settles without a fuss. We sit and eat dinner without the sound of a crying baby and I sleep for one long stretch rather than I’m tiny 1 or 2 hours stints. He is eating well and taking formula happily now the booby is no more. He crawls, pulls to stand, cruises along the furniture, claps his hands and is a happy boy.

Audrey has taken independent steps, continues to amaze us with her language and has an ability to make me cry with joy on a daily basis.

Once upon a time, Audrey wouldn’t eat food off a plate (she was so used to the high chair table). We worked so hard to get her to eat off a plate, but she would only accept one piece of food at a time! I mention this because the other week at Whoopsadaisy I put cheese and crackers on her plate and someone said “She’s having different foods on the same plate now?” And it took me a while to understand what they meant! Because I had forgotten how hard we worked to get Audrey to accept a plate of varied food. Just like I can now give her a spoon and a yoghurt and she just eats (she used to get stroppy and say “Mummy do it!!”).

Audrey asks to use the potty, she often drinks from an open cup. Rex holds his own bottle, he responds well to us signing “milk” and “food”.

They achieve great things and all I can do is think “Yes, but I wish she fed herself every meal time..” Or “Yes, but I wish he was sleeping through until 6.30am…” I need to be satisfied with how far we have come!

I guess sometimes it feels like baby steps (no pun intended), but we are getting there – both of my beauties are coming along and making me proud every day.