Poster girl

Part of sharing positive moments of our life is to ensure there is a balance to what people see when it comes to life with a child with Down’s syndrome. When society tells you to “screen” for Down’s syndrome and you love someone born with DS, you want to share your experience of that love to show it’s not a negative thing that needs eradicating.

It’s because of this that sometimes when life isn’t rosy and Audrey is being a pain in public, I feel huge pressure for her to be good. I want to prove people wrong, I want to show them our life is full of fun and happiness. That said, I’m also honest, so I aim to talk about and share the tough stuff too. Unfortunately life with kids is not entirely straight-forward.

Yesterday, I wanted to go for a run, so Ted did the bedtime stories. Rex was feeling particularly clingy and as I got ready to leave the house he was crying and screaming my name, Audrey however was perfectly calm and happy, “Goodbye Mummy!” she said cheerily as she settled into her bed. Meanwhile Rex was at the kiddy gate rattling it and turning red in the face. Yet he is my “typical” child and she has “special needs”!

The day before, at the park, we arrived at our car to return home. Stood just a couple of metres away from the car door Audrey refused to walk across the long grass. Rex was calmly standing by the car, waiting to get in. Audrey was refusing to move. I was negotiating (begging), but to no avail. As I made the decision to pick her up and force her into the car, a pregnant woman walked by. I kept my head down, got the kids in the car and got ready to leave, but really I wanted to turn to her and say “She’s normally lovely!”.

The fact is, I am always nervous around pregnant women when Audrey is with me. Suddenly she is the poster girl for Down’s syndrome. She is the sole representative – a make or break impression for someone making a decision about screening and termination.

It’s not just the “bad” behaviour that concerns me, sometimes when she is quiet or seemingly not engaged, I worry about people thinking she has nothing going on in her brain. I worry they will be judging her on conversational responses (or lack of) and think she is stupid. Yet if Rex was suddenly mute at a stranger’s question, I would dismiss him as shy and move on, I wouldn’t expect him to be judged solely on that interaction.

It would be nice to say we have nothing to “prove”. She is a multifaceted human being who can be happy and sad, easy-going and stubborn, good and naughty – but sometimes the perceptions of people with Down’s syndrome put them in a box of one or the other. They are either considered to be loving, cuddly and amenable… or unpredictable, hard to control and challenging – it’s rare to think of them as having the ability to be all those things and more. Or none of those things!

What we forget when we group people together (as if they were a different species to us) – is that within the similarities there are also many differences. And stereotypes sometimes fit, but sometimes don’t. Just as not every red head is feisty and not every American is loud – people with Down’s syndrome have stuff in common, but they are individual humans.

Audrey is more polite than your average kid. She’s better at sharing than any other kid I’ve met. She’s chatty and confident, she likes to laugh but she doesn’t like to see people get covered in gunge! She works really hard at physical challenges, but can sometimes lack confidence in that area. She’s a great eater, sits at the table like a dream but can be stubborn and wants to be fed by us sometimes! She doesn’t like lots of bubbles in her bath. She settles down at bedtime to sleep very happily.

And I can tell you about her “typical” brother Rex, he isn’t great at sharing, but is excellent at climbing and running. He can be shy, but once he warms up he’s great at making friends. He’s an extremely fussy eater and likes to eat with his fingers, whilst on the move. He doesn’t mind bubbles in the bath, but will help get rid of them for Audrey. He rarely wants to go to sleep at bedtime, he wants to keep playing… they both have my long eyelashes (which I got from my mother) and they both seem to have inherited my mother’s ability to chat!

The two of them have given me a very varied experience of motherhood just by being different kids with different personalities and the fact is, at this stage, Audrey’s Down’s syndrome plays a pretty small part in what makes her different to her brother.

Those of us with children who have Down’s syndrome may feel the pressure to be the model example of how it can all be ok, but we should also be allowed to show it’s not always ok – because that’s life with any child.

 

 

We Have a Runner!

One minute you’re willing your disabled child to learn to walk, then you’re willing them to have the energy to walk to school… the next thing you know they are running off in random directions and you can’t keep up!

My beloved good girl Audrey has discovered the fabulous feeling of freedom. Of running off alone, ignoring pleas, shouts, begs, stern-voice nos… she just keeps going.

I am fully aware that this is a common trait for children with Down’s syndrome (running off). I’ve met many a parent explaining their need for reigns/buggy straps/confined spaces for safety and throughout this I’ve been able to say, “Hmm, Audrey doesn’t really do that”. However she spends a lot of time at school now and not much time outside in open spaces with just me in charge, so maybe there hasn’t been much of an opportunity for the running? Well, she is taking the opportunity now!

This school holiday has barely started and the running off is becoming an issue. There are several reasons this phase is really hitting me hard:

  1. My lack of authority is now obvious. Both children do not seem to respond to me saying no. It’s incredibly frustrating when you try to discipline your children and they either ignore you or find your stern voice hilarious. Everything feels like it is escalating to crazy threats “No more television, ever!” or that a rage builds up and I’m growling at them and dragging them by the arm. Hideous.
  2. Her special needs are now obvious. I’m definitely upset by this “special needs” trait popping up. I hate the thought of anyone seeing me run after her (shouting her name as she ignores me), thinking “That poor woman, life must be so hard with that disabled child”. I just want people to remember that any snippet you might see of anyone’s life is just that – a snippet. So yes, she is being a challenge at the moment out and about, but on that same day she also approached a crying child to check they were ok, she also sat happily and ate her ice cream whilst her typical brother ran riot in the cafe. She also settled at bedtime stroking my face telling me I’m a good girl.
  3. My ability to parent two children feels questionable. This one gets me. If I can’t take my two children out and about without having to chase after one of them, potentially abandoning the other one, then how an earth am I allowed to be their parent? It creates anxiety around every activity I plan and I’m constantly wondering how on earth other mums cope (with two or more moving children)?

Audrey and I have discussed the running off that happened (a lot) yesterday. She has said she is sorry and she knows she needs to do good listening and stay near her mummy. We’ll work on it, but I know it’s going to be hard. It feels like she is changing and I’m struggling with that. I always describe her as a child who like to play by the rules, which remains true in some respects (shoes off indoors, wearing a school uniform), but also she kind of makes up her own rules!

 

Why I Still Love Christmas (having lost both parents)…

Christmas was once the most excruciatingly exciting time of year. From age 3 to 13ish it was the highlight of  life, from the build up (decorations going up, rifling through the wardrobe for presents, the BIG shop that included fizzy pop and chocolate) to that fateful night where the anticipation is just too much and you cannot sleep to that morning (eek I am sure we were up at 4am sometimes!) where the presents were ripped open and the day was pure joy and chaos.

We had big family Christmases, I think at their peak there was around 12 for dinner. My dad’s parents were not around (aside from his stepmother but she wasn’t with us Christmas Day), but my mother’s parents were close (Granddad was hilarious and a must-have for family games), I had three siblings, two old enough to have partners/kids, sometimes my uncle would join us with his wife, I think we had a great nan around too. We had one of those extendable tables and garden chairs with cushions were added into the mix.

I always had a mince pie for breakfast. We always played charades and various games in the evening. We always ate too much. I would have a Christmas Day outfit planned (a velvet dress generally, ooh I remember a year with ski pants and a roll neck!). My mother would embarrass me with her interest in flashing Christmas themed earrings and knitwear. My dad made me ‘snowball’ cocktails (don’t worry, mostly lemonade).

Sometime in the early nineties I accompanied mum to the local garden centre to finally update our hideous Christmas decorations. For years we had dragged those sparkly pink, purple, blue, silver… (you name it) foil garlands and lanterns (that hung from the centre of the room to each corner) down from the loft. We had a toilet-roll-holder-type-angel for the top of the tree. We revamped things that year and switched to green and red traditional stuff and ditched the tinsel. It was a big change back then.

It was in my late teens/early twenties that it really hit me that Christmas would never be the same again. I was no longer filled with that crazy level of excitement, our numbers had diminished a little, but most of all we were all grown up. Only a single nephew remained “young enough” for true Christmas excitement… for me, mum’s novelty stocking fillers became eye-rollerable rather than excellent (and she was an absolute stocking-filler-pro! Pre-internet we had lots of personalised items with our name or initials on, as well as very bizarre stuff like chocolate shaped like sardines in a tin, I LOVED my stocking in its heyday).

By the time I had met Ted and we tried that Christmas juggling you do when you are first a couple and want to spend Christmas together, but also do not want to leave your traditional family Christmas behind… I was ready to accept that Christmas had changed for good.

I think that made it easier for me to live with the fact that now, Christmas is very far away from that of my childhood. I have no parents, I have lost one sibling (and the connection to her two grown up children is weaker), My eldest brother is… well that’s difficult to describe, let’s just say he’s ‘a problem’ and my other brother battled cancer this time last year. I have one grandparent left, but she doesn’t know who I am and she is in a nursing home.

Yet none of this has ruined my enjoyment of this time of year. It has definitely affected it, you can’t escape the sadness loss brings, but that’s life. Naturally every emotional Christmas advert sets me off. Every Christmas song. I am either smiling or crying or both. But I’m a grown up now, it comes with the territory.

My mother was also a fan of Christmas. She liked to complain (in more recent years) about the stress and the effort, but she still had two Christmas tress and a crazy amount of decorations. She would still stuff the cupboard with nuts, chocolates and crisps even if only a few people were visiting, hey even if no one was visiting! Now I am in charge of creating the magic (hiding the presents not rifling through the wardrobe to find them!). Now I want to wear stupid Christmas jumpers and hats, now I see the fun in the tat.

And of course Audrey and Rex bring a whole new level to Christmas. We have their innocence and joy to surround us and their happy faces at what will be (in the scheme of things) quite simple presents. I took Audrey to an eye test last week and in the car she was singing along to Wham’s “Last Christmas” (she catches on to familiar tunes quite quickly and she’s definitely enthusiastic, if not in key), it was lovely.

The thing is, I like to think that everyone is in a better mood in December. So what’s not to like about that? A couple of weeks ago, a friend posted on Instagram about Kindly and the project they were running for people to write a letter for someone who is isolated at Christmas time. So I signed up immediately and within hours I had an email confirming I would be writing to a woman called Sheila (which was my mother’s name). I mean, obviously I was in tears but I was also so wonderfully uplifted by this tiny coincidence. That same day, I had stopped to donate to an old man collecting for the Youth Cancer Trust in our local Tesco and we had a very long chat. He was perplexed by the amount of people who completely ignored him saying “Good morning” and I told him about Audrey and how she loves to say hello to people but often they are just in their own world (or on their phone/listening to something on headphones). It’s part of life now to be zoned out and not in the moment with the other humans around you.

Which is why it is important to remember that Christmas is a time to connect with people. I had little wobble the other day when our ridiculous bumper pack of Audrey’s school pictures arrived and I thought; wow, we really don’t have that many people to give these to. But then I remembered that we do. We still have lots of family left and we have many friends who are “aunties” and “uncles” to our children. We have a wonderfully wide network and I am so grateful for that.

Every Christmas will be different, it may have felt like pure light as a kid and now it has darkness too, but I can handle that, because now my children are building their Christmas memories and they only see the light.

Merry Christmas one and all x

The Good Stuff not in the Guidebook

Last week I had a rare full day alone with Audrey (as we are in the school holidays and Rex was at nursery). We went in the car to a lovely play park and cafe by the beach. We picked out our best pebbles and I told her how I used to go to the beach with my mummy and collect the best shells. Audrey has a wonderful way of interacting, she’s supportive and interested; “Oh wow, with your mummy? That’s great!”.

We had a play in the park, we shared scrambled eggs and toast in the cafe. Audrey bossed me around a bit, she bossed around others too (telling a mum to “Calm down” when she was telling off her toddler!), we got back in the car and headed to the supermarket.

She flatly refused to get out of the car when we go there – told me she wanted to stay put. I tried to be as gently as possible in convincing her, but I was getting no where fast. I eventually had to man-handle her out and then distract her with news that the trolley had a ride-along buggy board! Fun! It worked.

At home we were both tired and sat watching a film until I thought it best to head out again (or we’d easily watch TV all afternoon) and we walked to our local park.

None of this is a big deal… but it was a big deal. For Audrey to walk to the park and back and not ask to be carried, for her to interact and play with other children once we got there, for her to stop sensibly to cross the road and hold my hand – things one might take for granted in a typical 5 year old – I do not take for granted. I revel. I praise. Oh wow… she is going to have such an inflated ego!

Because none of this simple stuff was expected, because her default position is a condition that “limits”; I am constantly lifted and amazed by her. As we walked to the park, having a conversation, I thought back to the leaflet we were given when she was born. It’s intention is not negativity, it aims to give you a fair account of what to expect of a child with Down’s syndrome; but they have to cover everything. So the list goes on; language delay, possible hearing problems, possible sight problems, speech may be difficult to understand (if they master speech at all), a long list of health issues, challenging behaviour, the autism spectrum, food problems, thyroid issues…. it goes on and on.

To be honest we hid the leaflet away and didn’t return to it. Sometimes something will get mentioned by a professional “Of course you are aware that children with Down’s syndrome can be prone to…” and I think “No, I wasn’t aware of that” and it doesn’t matter.

I know that knowledge is power. I know it is good to be prepared. I also like that my child leads the way a bit. There was no leaflet with Rex; we just muddled our way through.

I know that for some, that negative list in the leaflet is a reality and they aren’t walking to the park with their 5 year old with DS chatting about flowers and “Oh look that’s where I had my birthday party…”, I know we are so lucky. I feel lucky every time she calls me “Mummy”, every time she holds my hand, holds it to her face and then kisses it.

Our life is not without stress – several bouts of diarrhea for the kids last week, the two of them fighting, stropping, running off, challenging me… but I want to remember all the good stuff. Actually, I want to focus on it! Because how else do I get through all the crazy days with these kids?! My magical, crazy and surprising kids, that have no guidebook.

Getting a school place

Our little Audrey starts school in September. She “should have” (under the usual system) started in September 2017, but, thanks to a change in the rules, we were able to defer her for a year so that she enters reception as the oldest, rather than one of the youngest.

We have chosen a school near us, which is mainstream (for typical children) and happens to be a church school. Children with an Education, Health and Care Plan (that’s our Audrey) are allocated a place first. They the go through various other criteria (living in the catchment, worshipping at the church, having a sibling at the school etc).

Despite Audrey being at the top of the list as it were, I was a little nervous (and I guess confused) by the system.

I waited like everyone else for my email confirmation that Audrey had her place at our chosen school, (despite the fact I had already been in a meeting with a member of staff from our chosen school, discussing Audrey’s future there as if it were a given). But on school admissions email day… Nothing came. Instead, on the day people were notified what school their child was allocated, I was copied in on an email from the local authority to the Head of Inclusion at the school, basically saying “please let us know if you cannot meet Audrey’s needs”.

This did not make me feel secure. Especially when the response was that they would “make a decision after visiting her at nursery”. So we had gone from top of the list to a decision being made after the announcement day for everyone else!

I am pleased to say that a week later than everyone else, I received an email that confirmed they will be accepting Audrey at their school in September. Phew.

I’m also pleased to say that when I dropped off the required paperwork for Audrey’s application, the lady on the school reception said they had no other Audreys. And I just know that everyone will know her at this school. That feeling of pride that I regularly get from seeing her chat away to new people – I shall experience that en masse as she settles into the school routine.

I also went to a “transitioning to school” coffee morning last month, for parents of children with special needs. It was another eye-opening discussion where I realise that many children have more complex needs than Audrey, although I also felt very aware that she does have special needs. She will love school, but will find some of it challenging. However, (as cheesy as this is), the headline motto from this meeting was that there is not need for your child to be “school ready”, rather that the “school needs to be ready for your child”.

And despite Audrey not currently being potty trained (something I had hoped/expected us to have nailed before school), I feel confident that she is ready and that the school is ready for her. Putting aside the unbelievable gaping hole she will leave behind in my weekday life, I’m excited for this new chapter in her life.

Merry Christmas 2017

Merry Christmas everyone.

The kids have had a fabulous December so far. They love Christmas lights and treats and music… and today they loved opening mountains of presents.

We celebrated at home with my mother in law, brother in law and brother. Our first Christmas without my mother, who died in April. So much making it a tricky time, but we kept the festive spirit alive and had a really lovely time.

At a Christmas carol concert yesterday Audrey was not only the star of the show “Hello everyone!” but also got to be Mary. She adores Mariah Carey’s ‘All I want for Christmas is You’ and she loves mince pies.

Rex is approaching 2, so is in equal measures adorable and horrific. Tantrums have reached a peak.

I have to admit that I was scared about how I might “get through” the holidays without my mum or my dad, but the kids really do make it.

Rex’s words and general hello

I started writing this post in May (!) and listed Rex’s words;

Mama

Dada

Up

Tumble

Milk

Yeah

No

Down

Ball

Dog

Bird

Audrey (Audrew)

Dum Dum

Teeth

Duggee

Hat

At least half of which were combined with Makaton signs. Yes he’s basically a genius.

Since then he has mastered Mummy and Daddy and basically attempts to repeat any word you throw at him. He’s started singing Baa Baa Black Sheep a lot as well as the circle time song that Audrey used to plague us with a year ago (she still sings it now and again, but wow was that on repeat for a while). It’s November now and he has lots of sentences and is a very chatty young man.

This is a bragging post because I’m proud of him, but also because I want it to be known that it doesn’t really matter. Most of Rex’s milestones have been annoying to be honest, crawling, standing, walking, climbing… it’s just more to worry about. Talking you’d think was all good, however it does give him a chance to say “no” and to ask for things he can’t have. It’s a challenge to explain things to a 16 (now 20) month old.

Anyway, he’s doing well and we’re really pleased about that, but we were and still are, really pleased with how Audrey is progressing.

In fact, I remember my time alone with Audrey as an 18/20 month old as not very different. No walking of course, but I feel like we had our little chats and she made choices, yet I know she wasn’t at the Level Rex is now at. I guess I’m just saying that you can be content with your child and their development even when it’s delayed/tough going.

Life is still very challenging with two small humans, they test me daily, but it’s also wonderful. Their little voices! The chats they have with each other! The cuddles! The fights! The tantrums! Losing my mind! All life is here.