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!

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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.

Audrey turns 4!

I can hardly believe it, but I now have a 4 year old daughter!

I'm also wondering why mothers aren't always a blubbering mess on their kids' birthdays. I started reminiscing days before her birthday and it's started to blow my mind that Audrey and Rex both grew inside my body. Woah.

We had a rocky start with Audrey popping out all "extra-chromosomey" so the love we have and the way she is now is extra sweet.

Our next big hurdle is potty training, which she's been potentially ready for for someone (a year maybe!) but I've been putting off and putting off… but once we've nailed that, wow, onwards and upwards for our grown-up girl.

It's a funny time because Audrey's typical peers will be starting school in September (we have deferred her to be the oldest in her year next year), so it's strange that we aren't moving forward in that way. But Audrey needs the extra time and when I look at how far we have come since her 3rd birthday I know it's the right thing to do.

Yesterday we had a great party (a BBQ at home), it rained half the time but we were ok inside. I made a chocolate peanut butter Hey Duggee cake and Daddy cooked lots of meat and made burger buns. Audrey got lots of lovely presents and was out like a light at bedtime, exhausted by a very fun day… the same couldn't be said for Rex unfortunately, he seems to get wired, but he fell asleep eventually.

Happy birthday beautiful clever girl.

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!

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

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. 

My world 


OCTOBER = Down’s Syndrome Awareness Month.

This seems to come around so quickly and  I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts. 

Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.

I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?

Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.

My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?

Well, maybe we can’t… But maybe we can, so we’ll keep trying.

We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.

And so I’m going to point you in the direction of this (highly anticipated in our community), documentary; 

http://bbc.in/2dkMib6 

And this great article;

http://www.telegraph.co.uk/women/family/sally-phillips-my-son-has-downs-syndrome—but-i-wouldnt-want-to/

And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.

I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.

One thing I’m 100% sure about is; my world is better for having Audrey in it. 

#worldwithoutdowns