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!

 

A Strong Reception

As the summer holidays are in sight and Audrey is 6 (today!) I thought it might be a good time to write about Audrey’s life at mainstream school so far, because here we are, nearly finished with her first year in reception!

I mysteriously didn’t write (even a little) blog post about Audrey turning 5 (I checked back), but here we are welcoming the big 6 at the end of her first year of mainstream primary school and we have a summer break of (hopefully) fun times ahead.

By now I am sure you know I am so proud of my beautiful, clever, friendly little girl. We have come so far since that hot July day in 2013, when she was presented to me and all I saw was Down’s syndrome. What felt like a cruel blow now feels like the best thing that ever happened to us! We’ve had a fun and exhausting weekend celebrating her birthday, she got a doll’s house, her first “Ken” doll (she has mountains of female dolls) and as always, Audrey gave us amazing feedback saying “This is my best present ever” when she saw the dolls house and eagerly introducing Ken to “her girls” (the other dolls).

So I dropped my 6 year old off at school this morning and now I can share with you my thoughts on how things have gone for us, having a child with special needs attending a mainstream setting.

I had many fears about her starting school (even with a deferral making her one of the eldest, rather than youngest in the class), but I also knew that there was a big chance Audrey would thrive in the setting. All the adults that “worked with her” (key person at nursery, therapists, inclusion service etc) would say what a sociable, outgoing child she is and that she’d have no trouble making friends and that reception was all about making friends.

My main worries were “she’ll get crushed to death” – she is small and her low muscle-tone makes it harder for her to navigate obstacles/stay on her feet when getting knocked around. I also wondered if the whole environment might just be too loud and full-on for her.

As I am slowly learning, she is often more resilient than I expect her to be.

She did indeed get knocked about a fair bit at the beginning of school. Things you couldn’t anticipate (tripping on a trolley, getting hit by a rogue ball in the playground) will simply happen in a busy school environment. It is heart-stopping to get the call that your child has had a bump to the head, but she’s survived and I think everyone is aware now that she’s a bit more fragile than some of the other kids.

We had a parents’ evening at the beginning of school and it was so uplifting. We had fantastic feedback about her settling in, making friends, being part of the class and her positive attitude (she arrives every morning saying “Good morning guys!”). Our second parents’ evening was much the same, aside from one tiny comment about how Audrey wouldn’t be reaching her Early Learning Goals. It’s not like I expected her to be performing at the top of the class of typical children, it’s just that I had forgotten that she wasn’t on the same level, I had forgotten because we are so often focused on all that she can do. You can sort of put yourself in a protective bubble, where you look at your child through rose-tinted glasses because they, to you, are perfect. This was just a reminder that our child, measured against “typical” standards is “delayed”.

Put academic measurements aside, look at the bigger picture and you’ll see Audrey attending mainstream school has been a success. She’s made brand-new friends, she’s learned how to write her name (just about), she can sound out and read all kinds of words and she can tell me details about her day. She has progressed physically and mentally just from interacting and learning alongside her typical peers.

Audrey has school lunches – this may have contributed to an improvement in her eating at home too, as she now eats lots of vegetables and is happy trying new things. She always tells me what she’s had for lunch (macaroni cheese and fish and chips are her favourites!) and explained recently that the children line up for a “squirt” before lunch; yes, I was confused at first, but when she mimed it out I realised she meant hand sanitiser! It’s tiny details like this that really show how far she has come with her communication.

The thing is, I can put myself in the position of a parent of a typical child starting reception… you learn there is a child in the class with “special needs”; they need a 1:1. Being brutally honest I do think it would have raised concerns for me. I would wonder: “Will their behaviour be challenging?”, “Will their needs affect the class as a whole?”. So I was also nervous of the the other parents and their attitudes. I wanted to be able to tell them all that they would soon see what an asset she is.

I’m hoping it didn’t take long for people to see that. Audrey’s presence in the class is not a drain on resources. It’s not a waste of time for her to be there learning with her typical peers – it’s a success story and a positive experience for all concerned. She learns through copying, so typical children propel her education and she provides them an insight into disability. She has her challenges and I’m sure sometimes the other kids wonder what on earth she’s on about(!), but also they’ll see she is kind and thoughtful and likes lots of the same stuff they do. I also like to think her 1:1s are an asset to the class because, yes, they are there specifically for her, but they will no doubt help other children when needed.

Everyone has been welcoming and Audrey has made some great friends. We’ve had birthday parties and play-dates a plenty. She’s been on school trips to the local library to see a puppet show, to the zoo, she took part in sports day, harvest festival at the church and she performed in the nativity as an angel. Audrey was recently chosen to be “Star of the Week” (along with other children), getting a certificate and a little box allowing her to take something into school for “show and tell”. My heart is filled to the brim with pride that she is taking part in all these school activities.

She does get very tired at school, she can exclaim “Not again!?” when I tell her it’s another school day, but mostly she bounds into school full of enthusiasm and bounds out ready to tell me she had so much fun.

I know that sending your child off to school can be nerve-wracking for anyone – suddenly your child is spending a lot of time with people you don’t know very well. But it didn’t take long for her to be well-known throughout the school and I have no doubt that Audrey will have many happy years at this school.

And so on to Audrey’s second year of primary school (confusingly; year one). She enters with a knowledge of the school routine, a good group of friends and her can-do attitude! But for now, a bit of summer time fun and a break from the school routine… a welcome break but also a terrifying stretch of days ahead entertaining my two active children… wish me luck!

Audrey Starts School!

Audrey holding a picture of me at primary school

I’ve just dropped off a piece of me in a classroom with lots of people I don’t know. The little lady has started reception at primary school.

My daughter is friendly, kind and gentle. She loves imaginative play and reading books. She likes routine. I have no doubt that she will enjoy school, I’m just not sure how much I’ll enjoy her being there!

Anyone who knows me that I will cry at TV programmes, songs that come on the radio and a fleeting thought about someone’s sad situation, so it was a huge surprise that I didn’t cry today dropping Audrey off at her first day of school.

Several factors helped – school drop off is not a romantic, sound-tracked moment.; it’s carnage! We went as a family, with a child in a buggy and one on the loose, we battled through a crowd of legs and shouting and hugging and hellos and goodbyes to get to her class. Also, Audrey was very excited. She managed to (almost) walk all the way there (major achievement) and she jumped, sang and hugged her way down the road, she was genuinely happy to be going to school. It’s tricky to feel the true emotion of a momentous occasion when you are in it. It’s actually easier for me to be tearful anticipating it or reflecting on it.

And so, here I am in a cafe. Ted and Rex are off shopping (typical boys!) and Audrey is in her school classroom, with her teachers.

Of course I can’t help but reflect on 5 years with her. 10 months of maternity leave of just us, followed by a mix of us and nursery, us bump and nursery, us Rex and nursery… and now Audrey has her own thing, she is a schoolgirl!

“They” say it goes in a blink of an eye. I don’t know if  I feel quite like that, but I do feel immensely proud of Audrey and how far we have come from tiny baby on oxygen to confident 5 year old.

As I analyse my feelings, I can see what is creeping in… I felt it during maternity leave with Rex. She had her nursery days and we went to groups but I was suddenly a different mum, I was seemingly a mum of one typical child but that was not my whole identity. She is a part of me, a part of me that I am truly proud of and it can feel very strange to be out and about without her. What a mix of emotions this brings and a new chapter for us all – I have handed in my notice at work and plan to work on freelance writing. I am very lucky to have a supportive husband allowing me to take this leap and it also means that I can be there to drop off and pick up Audrey from school.

Happy September and good luck to everyone in their “firsts”, I love autumn and I’m feeling so very happy that its crisp and sunny outside and the leaves will soon be crunchy under our feet. My favourite time of year.

Alike, But Different.

On Wednesday night I woke around 1am to find myself being sick on and off through until 8am. It goes without saying that Thursday was not a great day for me. Thankfully Ted worked from home and my children offered me plastic cups of “medicine” and gave me hugs and kisses (that I should have fought off due to my potential contagiousness!), they also whined a lot and ran around arguing. Being ill as a grown-up with kids is the worst. The best time to be ill is when you are a kid and a parent looks after you.

Brighton Pride 2018

Anyway, I felt a lot better on Friday and we had a good day with the kids (some top secret modelling, but will share more about that at some point!), we took them to the park in the afternoon and met a lady with a 4 year old son who has special needs. We got chatting and we found ourselves in a position we’ve been in before – struggling to empathise with someone who thinks you can. She sees another “special needs family” and shares her story, but we feel, well, like we occupy a different space; Audrey isn’t “severely” special needs, but she’s not typical either. She sits in a space in between the two. I’m not denying Audrey has special needs, she definitely does and you only have to spend time with other 4-5 year olds to know that she is “different”. However we often find ourselves chatting to someone who is offloading about their child (with some form of special needs) constantly waking in the night, struggling to communicate, challenging behaviour, interacting with other children (hitting, tantrums)… for the most part I can only really apply some of these challenges to Rex!

This lady said she was surprised we had chosen to have another child after our first had special needs! Ha! How we laughed about that one on the way home. All children are hard work and of course, children with special needs present a different set of challenges, but Audrey made us feel very comfortable about doing it all again. Rex, however, well and truly scuppered plans for any more kids!

That evening I was very much looking forward to a decent sleep (as even Thursday night I was restless). As discussed with the lady in the park, Audrey is a good sleeper, but Rex sometimes shouts in his sleep.

Around 2am the dreaded sound of Audrey retching reached my ears – I was out of bed like a shot. There she was, sat upright, sick in her bed and bright and chatty “Sorry Mummy” she said as I wiped up the sick. And after vomiting in the bucket I held for her, “Phew! That’s a lot of sick!” She said, brushing her hair back.

She literally couldn’t get any better. After returning to bed and several more leaps back out to her aid with the bucket, I decided it would make more sense for Audrey and I to sleep in the spare bedroom together. So I scooped her up and laid next to her in the double bed, bucket at the ready.

As soon as I laid in the dark with her, I felt around to find her face and gently stroke it. She did exactly the same and stroked my face. She whispered that we were in “Uncle Graeme’s bed” (because he stayed in our spare room for a week during his chemo this year). She has a snotty nose at the moment, so within minutes she was asleep but snoring like, well, like her Uncle Graeme. I realised that I was really going to struggle to sleep, but do you know what? I strangely didn’t care. I could smell her sicky breath, but I could also feel her warm body right next to me and I felt so lucky to be her mummy. To be her protector.

In the morning I was awoken by many things (Audrey’s feet kicking me, the light coming through the half-closed blind, Rex thrashing about in his cot), but it was magical to wake to the sound of Rex saying “I want Audrey back!”.

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 in general).

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.

Nursery times 2

Today I went back to work after 18 months of maternity leave (well, the cold, hard fact is, I was made redundant whilst on maternity leave, but let’s ignore that). 

As I walked home (that’s right, no dodgy commute, just a meander through leafy Hove), I felt so incredibly emotional. I’m a cry baby anyway (I’m sure I’ve mentioned my tearful John Lewis advert moments/sniffles at people dying on Neighbours/sobbing to La La Land?), but this felt like such a mix of feelings. Rex spent an entire day cared for by nursery staff! – You see he’s only spent time with friends and family before, this was a big deal. 

Audrey is a nursery pro – she started at 10 months and save a few tears at pick up (when she realised we left her!), she’s always been an easy-going sort; she took to it like a rubber ducky to kids’ bath time and we never looked back.

Rex has been a bit more clingy in general and at 16 months he’s at a trickier age than she was, but, nursery settling sessions went well. So I wasn’t crazy-nervous about him starting and to be honest second time around you’re much more willing for your kids to fly or fall. But when lunchtime arrived I realised I was keen to check in and hear from nursery that he was having a good time (which he was).

Once the day came to an end I was excited to get home to see my family. It was a good feeling because it is so rare that I get to miss Rex. Audrey has been going to nursery twice a week and on those days I get very excited for her to come home… clearly every day I cannot wait for my husband to get home, but for Rex… well we just don’t get very long breaks from one another to miss each other. What a novelty. I missed him. Amazing.

In many ways I’m one of those mums that complains about how I’m always with my kids and that I have no time for me, but then doesn’t let others look after them. I fear leaving them, it’s a control thing and I’m working on it. Walking down the street alone on a mild summer evening was pretty awesome. I started daydreaming about dates with Ted, maybe going for a run; just time without kids that I haven’t “allowed” myself before.

Getting home (5 minutes before my crew), I really got the “sight for sore eyes” phrase. Wow. My beautiful children arrived home with their Daddy, full of smiles and lots of shouting “Mummy!!”, it was wonderful. Rex was very clingy, but in such a lovely way and I got lots of cuddles and kisses.

For anyone wondering if working (and this is only part time to be clear) after having children is a good idea… thinking; will you feel guilty? Will it be difficult to do something other than wipe bums and faces? Will my children suffer? Well, in my experience, working or just having a regular activity away from your children is a great idea (insert thumbs up emoji here). I just feel like I’ve had a boost and that both my children seemed lovelier because I didn’t spend the day with them! Ha. 

Check them out in pics below – Rexy got for a balloon on his first day and he loves balloons!

Stuff and things

My husband and I say “stuff and things” as a reply that basically means “I can’t think of anything to say right now” or something like that. It’s difficult to explain our weird ways to others.

Anyway, I’ve decided to take “stuff and things” as a label for posts about our day to day life. Rather than all the comment on various DS/baby issues… Just a little catch up on what we’ve been up to (if anything!). So here goes, the first chapter of stuff and things…

This week I gave Audrey a cold sore 😦 it was always going to happen, I get at least 2 a year and Audrey and I kiss a lot).They don’t seem to be bothering her, but they are bothering me – mine has cleared up, she has one either side of her mouth in full swing, so we can’t kiss! Booo.

In happier news we went to Woodfest in our local park on Saturday. I held a tiny owl and Audrey watched. Then we headed to the Brighton Food Festival on Hove Lawns and Audrey went on her first fairground ride with Daddy!

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Audrey wasn’t that fussed about the ride, but she liked seeing me on the sidelines.

Sunday we went to a DS picnic back at St Ann’s Well Gardens. I didn’t take any pictures, doh! But we met up with other local DS families and Audrey managed to nap even though a little 3 year old monkey called Thomas came over to investigate and squeezed her foot. She also slept through Elliot passing by whilst roaring like a dinosaur… Ahh the toddlers are quite an eye opener!

Fun to see other little uns with DS doing well and having fun with their siblings. There was even a guy and his wife who popped by – their niece was born last week and unexpectedly had DS. How amazing that he took the time to look into the local DS community, his sister having only given birth last week! What a fab uncle.

Last night Audrey had her sleep study to hopefully sign her off from the care of the hospital (and confirm she doesn’t need to go back on oxygen at night), no idea how it went as she is in her own room these days. The probe was off her foot in the morning though, wriggly little lady! Fingers crossed….