Stuff! And Things!

Hello! Yet again real life and raising children somewhat takes over from blogging. So here’s another quick update on anything and everything I can think of.

They both had haircuts and behaved so well:

The other week Audrey was feeling poorly with a high temperature, laying on the sofa under a leopard print blanket. I came down having got dressed and she said “Mummy, you’re the same as the blanket!” I was initially confused, I explained I was wearing a cardigan, not a blanket… when I realised my t shirt was leopard print! How proud I am of Audrey and these simple moments.

The winter has already meant a steady stream of germs, but there is no escaping it when they both go to nursery and we spend our lives at play groups and music groups with dirty toys.

Audrey’s current favourite song is ‘Hocus Pocus’ by Focus. It’s worth noting as we’ve been through various favourites;

‘Black Magic’ by Little Mix

‘Ice Ice Baby’ by Vanilla Ice

‘Sorry’ by Justin Bieber

‘We Built this City’ by Starship

They both currently respond well to Hot Chip.

We watch ‘Trolls’ at least three times a week, but just a month ago it was ‘Moana’ a go go, so who knows what they’ll be onto next?

Rex is currently obsessed by cars, lorries and fire engines. Audrey is very keen on books and dolls. They both love handbags.

I am starting to appreciate them both more and more. Just looking and listening and seeing how wonderful they are. This is when they are not fighting over a toy or throwing a tantrum over something incredibly minor.

They both love Christmas (the build up) so far and I’m excited to enjoy it with them.

Audrey was recently a poster girl for a local charity (Amaze), which we were thrilled to see.

Will try not to leave it too long before my next blog post, we have a lot going on (Down’s Syndrome Awareness wise and I’m general).

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If I Could Go Back…

It’s Down Syndrome Awareness Month (predominantly in the US, but happy to embrace it as I always do), so what better time to direct you to a short film I had the pleasure of contributing to.

I have mentioned The Specials before (an online series that also aired on OWN in the US), they have been a fabulous, fun part of our journey with Down’s Syndrome.

I used to work for a company that sold documentaries internationally and we represented The Specials before I was pregnant with Audrey.

It was quite a moment for me, when, back at work visiting colleagues with my small baby, I bumped into Katy (producer of The Specials) and for the first time, I felt excited to tell someone that my baby had Down’s Syndrome! I knew that she would get it.

Anyway, the company I worked for went into liquidation, time passed, but I thankfully remained in touch with Katy because she’s just one of those lovely-type-people you stay in touch with.

She asked if we (my family and I) might be interested in being filmed for some content for The Specials website. They were interested in representing a different part of the Down’s Syndrome journey – the early part with a little one like Audrey.

Of course I said yes, I am always thrilled at the prospect of showing off Audrey and reaching people with our story – showing what life is like.

Katy started filming us the summer Audrey turned 2 and continued into the winter when I was heavily pregnant with Rex.

I’m pleased to be able to share with you a short film that came from some of that filming: a project called “If I Could Go Back…” that has given a voice to a variety of parents of children with Down’s Syndrome, explaining what those early days are like and what we’d like to say to ourselves if we could go back…

Click here to view on YouTube

It’s a perfect film to share during Down’s Syndrome Awareness Month and one that I hope will be useful to new mothers, fathers, grandparents… basically anyone who fears what it might be like to have a child with Down’s Syndrome in their life. What we thought “then” and what we know “now” = just wow. I could literally talk all day about what I thought it would be like to have a child with Down’s Syndrome and what it is actually like.

Audrey makes me so happy, so proud and she continues to surprise me every day with what she is learning and has achieved. So different to the fear in my heart that moment I first looked at her face.

More links to come no doubt, but for now, I hope you enjoy this one, it’s certainly emotive!

Late for school

This week you will no doubt see pictures of beaming children in their school uniforms for the first time all over your social media feeds. Unless you don't know anyone with school age children. Or you're not on social media.

But there will be no picture of Audrey in her uniform.

Just six weeks dictated Audrey would be one of the youngest in her school year, instead of one of the oldest. So when school selection time came around (and the formulation of an Educational Health and Care Plan), we weighed up our options. The new system for summer born babies and children with special needs allows you to apply for a deferral; so that your child is the oldest in Reception and progresses through school in that class. Since Audrey is both a summer baby and a child with special needs, we knew we had a great chance of getting a deferral to start Audrey in September 2018.

We made a list of pros and cons and to be honest the only pro to Audrey going to school this year was a saving in childcare costs! More important than that was the chance for Audrey to "catch up" a little with her typical peers (since we have chosen mainstream schooling). She isn't potty trained, she hasn't really been walking unaided for a year yet and she still needs assistance in many areas… She's also very small and quite delicate, the thought of her in a class of typical 4-5 year olds is pretty scary!

I should consider ourselves lucky in that we know she can progress and close a gap (even if only a little), but for some children with special needs, a year might not make a difference to their ability to settle into mainstream school. Mainstream might not even be an option. So yes, we are lucky, but here we are, watching her NCT and nursery friends go off to school and I do feel emotional about it. It's a huge step, a big change and we've dictated that it's not her time. We've changed the path. I think I'm struggling a little with the fact that this is a different path from the one I had expected "our child" to take, like mourning the loss of an expected reality.

The thing is, I am excited about that first school uniform picture of Audrey, I am excited about her starting school, but I also know that starting now is not right for her, she isn't ready.

So another year of nursery. Another year of music classes. Another year of swinging in the park. This reality is not a loss for me I guess, but a gain…

Good luck to all the September 2017 school starters!

Special needs 

Gemma Mount Photography

Most of the time I'm a mum. But sometimes I'm the mum of a special needs child. It's actually quite rare that I'm fully aware that Audrey has special needs. It doesn't impact our day to day life as much as you might think.

I recognise that she needs more help than her typical peers when it comes to various things (eating, navigating obstacles, potty training…), but I guess I'm just used to her progressing slowly and she just seems a bit younger. I don't really think of her as "special needs" child. 

Most of the time I want people to look at her. She's beautiful, funny and friendly, so I like to show her off. But every now and then…

Audrey and I went to a mum event last month. Run by MumstheWordOnline, it was a talk and book signing with Clemmie Hooper, the midwife, mother and blogger who is "instafamous".  I set off with Audrey in the sling, both giggly and excited by our alone time. Stopping to look at pretty flowers before we caught our bus to town. It's rare I can travel on a bus and sit Audrey next to me – sat up high so we can talk about what we can see out of the window. These are the parenting moments you drink in. Those perfect moments of excitement and happiness over the simplest things.

We met our friends Louise and Harry and walked to the hotel venue. Audrey was snuggled into me and I could tell she was a bit sleepy. 

We collected our name badges and then entered the room. It was then that I realised bringing Audrey was a mistake (bringing Rex would have also been a mistake but for slightly different reasons, but I digress!). The mum chat volume was high. The room was crowded and chaotic, it was warm and everyone was moving around in limited space to chat and get coffee. Audrey was instantly asking to go home. 

I thought that once we sat down to listen to Clemmie speak, Audrey might be content on my lap, but it soon became clear that wouldn't work – they had a PA system and Audrey covered her ears and said it was too loud. She started to cry. More than anything at that point, I felt so terrible having put her in this position. We moved to the play area but she didn't want to play with any toys, she just wanted to go home.

At the very back there was a room for buggies. This was furthest away from the noise, Audrey was much calmer in this room, but basically wanted to leave via the fire exit because she could see the street. After a bit of back and forth, I realised it would be easily solved if we left. A brief freak-out (on her part, obv!) as we left through the main noisy room and then we were in the hotel lobby; she was immediately fine. We popped into the large toilet right there and Audrey said "Phew!" And was back to her usual happy self. We left and she was all waves and smiles to the hotel reception staff.

We went to the library, then onto a cafe for lunch, Louise and Harry joined us, calm was restored. Lou tried to make me feel better by informing me Harry also asked to leave and handed her her handbag(!), but the fact remains he wasn't emotional, he wasn't stressed, just bored.

However it's moments when she's upset that I feel like a special needs parent. I feel eyes on me, I worry about pity, I think people see our life as hard. I feel like they see Audrey as difficult, as a burden and I hate that.

I accept that she is different. Our life will be different. But I hate the thought of anyone seeing a fleeting moment of stress as "the way things are".

These past few weeks have been tough. Not because Audrey has Down's Syndrome but because both my children have hit hideous phases of tantrums and tears and er, "wilfulness"! Two under 3 has been tough and despite the fact that Audrey is now 4, it's still very tough. The fact is, most of the time Rex is the main cause of stress, but he is typical and no one would bat an eyelid to his tantrums. Maybe no one bats an eyelid to Audrey's, but that's not how it feels when you are a special needs parent.

Calm restored in a fancy toilet.