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Happy World Down Syndrome Awareness Day 2022

It is World Down Syndrome Awareness day today and we are wearing our colourful 'lots of socks' and going to a party at Bristol Down Syndrome Trust dressed in PADS colours.

I thought I would share the piece I wrote for Frida's nursery as it covers a few bits that we have been doing with Frida recently.

Frida has been going to a really brilliant nursery since Last August and has settled really well. She is one of the gang in the baby room and every Thursday morning as I hand her over to one of the brilliant staff, I know she will have a fab day. She is comfortable, well understood, loved, respected and like every other child that attends her nursery is treated like the individual she is.

18 Months

Frida turned 18 months on 20 January. It feels like a pretty big turning point. We move up a group on the PADS Facebook groups from ‘New Parents’ to ‘Pre-schoolers’ and in doing so have left behind the safety of the baby group. It also feels like we are leaving behind the safety of Frida being a baby. We now move towards learning about Frida as a child. I’m more frequently spotting where she is not doing some things that the majority of her peers are, whereas previously the differences were not so obvious. That said, I don’t see this as a negative and it’s not getting me down as she is constantly moving forwards, learning new skills and loving her life. We love having her in our life - she is incredible.

My list of what she does this month (I make one every month or so to reflect back on how far she has come and I love it!) includes some really cool things which has helped her become even more independent.

‘At 18 months I:

#PADSGTKM - Activity Ideas!

I love a theme - either for a play session or as topic for a couple of weeks. They give a good opportunity to explore new ideas and vocabulary associated with that topic, giving them chance to do lots of lovely play based learning. I find it also gives me a good motivating kick to become animated and excited about play again - kids feed off that and, in my view, learn more when you are both having fun! Whenever I feel myself uninspired by the play I’ve been doing with the girls I knock up a quick themed session or rotate all the toys that are on display, loosely based on a specific theme.

Ada is learning about harvest at the moment at school and has her harvest festival this week so I thought it would work for both girls if I dug out the 1990s plastic farm, animals, all our books and activities on farm animals and base all our play around it.

Via PADS Early Development Group Sessions (PEGS) we get ideas to support our baby’s development on a fortnightly basis, via a video, with a follow up group session led by a specialist to go through how our babies are getting on. It’s been brilliant for keeping ideas fresh and to know I’m supporting Frida’s development in the best possible way.

One of the activities we are doing at the moment is matching pictures to objects. I’ve taken photos of some of her favorite items and we are working on choosing and matching using the cards and her favourite toys.

#PADSGTKY - Musings on Milestones

We’ve been treated to Frida reaching quite a few of the key milestones recently - and those of her mates. She’s in a gorgeous gang of 5 babies born within a month of each other (exactly - all wonderfully born between 21st June and 21 July) and their mums share all their highs and lows and everything else on a daily basis. So if Frida is having a quiet time of consolidation and seemingly not ‘doing’ anything different or new for a while (which happens with all babies, right?) there is always some excitement to be shared from one or more of her #PADSPals.

Recently they’ve all been working hard on crawling or preparing for crawling and have developed their own styles. Some of them are using their new skill to head towards the dog bowls and cat flaps and are making their own water play! It makes for funny videos.

Frida favours a 3 point / bear crawl with her left leg. Her PADS physio suggests she might be a bit tight one side in her hips, but she is seeing her Brainwave (privately funded) physio in person next week so we will get him to check her over. It isn’t stopping her and she is now very quick and loves to explore!

PADS - Getting to Know Me for World Down Syndrome Awareness Month (#PADSGTKM) 'Our Story'

I started this blog after Frida was born and I had a lot to say. Since March I’ve not felt like I’ve had much to share with the wider world - we’ve just been cracking on with the business of raising our two brilliant girls and getting to grips with the 'new normal' as we came out of over a year of being restricted in what we can do by the impact of COVID-19. Blimey hasn't it been busy?

As it is World Down Syndrome Awareness Month I may drop in occasionally with a few updates so we can share the good work being done by Positive About Down Syndrome (PADS) using the hashtag #PADSGTKM. A lot of what we do to support Frida comes from PADS so this month seems like a good opportunity to share a few updates to remind everyone that Down syndrome in itself is not something to be worried about any more than raising any other child into adulthood. PADS has suggested a set of topics to post about every day. I was thinking about sharing a little about what Frida is up to right now anyway, to draw attention to the fact that it is World Down Syndrome Awareness Month, yet as ever PADS has done the thinking for me.

The first thing to do is to share ‘Our story’:

WDSD Quick Win 6 - ‘Brush Your Teeth’

When I first looked to Facebook to see what support groups were available I came across ‘Bristol Down Syndrome’. It’s not hugely active but there are some lovely people there and when I introduced myself and asked what information I could helpfully arm myself with whilst I was waiting for Frida to arrive - I received really lovely messages. Other than Nicola’s suggestion that I join the PADS Great Expectations group, the two that I still remember clearly are 1) just enjoy your pregnancy and your baby (which I did and do very wholeheartedly) and 2) start brushing your baby’s teeth at around 6 months even if he/she doesn’t have teeth.

From everything I’ve read on teeth (not a huge amount because unless I really need to know about something I try not to crowd / worry my brain with information!) babies with Down syndrome can reasonably expect to start to teeth a little later and for their teeth to arrive in a sequence all of their own. So for us parents it is anyone’s guess and I am excitedly yet patiently waiting to see where the first will arrive. I think I’ll be a bit disappointed if it is one of the bottom front two teeth!

Like all things where there might be a bit of extra waiting time, I know that her teeth will come eventually so I’m not fussed about when. But when they do arrive I want her to have good dental hygiene and that involves tolerating a toothbrush. We started brushing Ada’s teeth really early so that she never knew any different so that tip really spoke to me and I made a note to make sure we had toothbrushes ready for when Frida turned 6 months.

Since then, we’ve been gently brushing over her gums a few times with a soft bamboo brush every night and she smiles at the sensation, grabs the brush and tries to do it herself.

Babies with Down syndrome are a little more likely to have sensory sensitivities and the mouth and face are places where this could be felt most keenly. So starting brushing early and building up a tolerance to the sensation of touch in her mouth has hopefully made sure we’ve avoided any later rejection of the toothbrush. It is also working on her hand-eye coordination so a double whammy for supporting development.

Long may that continue! So a quick win (a speedy brush once a day) for what I hope to be a lasting benefit of good oral hygiene and a desire and ability to do it herself.

WDSD Quick Win 5 - Follow Heidi

If you are a fan of social media and enjoy reading about people and learning about their lives then this tip is for you. And if you don’t, then you haven’t met some of the people I want to introduce you to.

This quick win is all about curating your social media to include young people and adults with Down syndrome enjoying living their lives. I’d hope that it would go some way to help alleviate any additional worries you may have about your child’s future.

It’s very simple and very addictive - follow self advocates.

The term self advocacy has its roots in disability activism and my goodness, the first person I want to introduce you to is most definitely an activist!

Heidi is 25 and lives with her husband James.

Heidi is an activist. Not only does she speak very candidly about her life and how much she enjoys it - showing the world snippets of their day to day life as a married couple and in doing so challenging outdated perceptions about how people with Down syndrome live - she is also in the midst of a legal challenge. The discrimination challenge against the Secretary of State for Health is to be heard in the High Court and concerns the law around abortion. At present a baby that is ‘seriously handicapped,’ (s1(1)(d) Abortion Act 1967) either physically or mentally, can be aborted up to term (40 weeks). This is a really controversial topic and one that Heidi and so many people with Down syndrome, their friends and families feel incredibly strongly about.

Heidi introduces the challenge in her own words:

‘Hi! I am Heidi, I am 24. I live a very happy, fun and fulfilled life.

At the moment in the UK, babies can be aborted right up to birth if they are considered to be “seriously handicapped”. They include me in that definition of being seriously handicapped - just because I have an extra chromosome! Can you believe that?’

The case is being crowd funded and you can support the team and read more about the challenge on their page.

Heidi came to my attention just before Frida came along. Just as lockdown 1.0 lifted she married James - the love of her life - in a small ceremony. Whilst heavily pregnant and waiting excitedly for Frida to arrive I enjoyed watching their TV interviews where their love and joy was spilling out. I also watched part of their beautiful ceremony, which they had live streamed so that those who couldn't attend due to COVID-19 restrictions could watch and I was then hooked on finding out more about Heidi and her husband.

Heidi shares lots of brilliant and hilarious videos on her Facebook page - Heidi Crowter ‘Living the Dream’ where she speaks passionately about the value of her life and how she challenges outdated perceptions of life as a person who happens to have Down syndrome.

Heidi is hilarious, bright, witty and her attitude towards people who think she is somehow valued less than others is direct, clear and frequently full of very well aimed sass.

We can never tell what our children are going to do when they are older or how they are going to be. We can only hope that they will lead happy and fulfilled lives, have respect for themselves and be valued for who they are.

Heidi says that her parents treated her no differently to how they treated her siblings and we could all learn a lot from that. It comes across that they didn’t put limits on her and had expectations that she would succeed, in whatever way success meant to her.

Heidi is funny. She is loved, valued and respected. Heidi is an activist. Heidi is married. She has a job. Heidi is sassy and has an army of supporters right behind her as she takes her case to court.

One of my favourite Feminist quotes is ‘well behaved women seldom make history’ and I have a feeling that my girls will be learning all about Heidi as they grow up. Get to know Heidi now. You won’t regret it.

[Photograph is Heidi and James stood smiling together, wearing Black Tie outfits and the words: Journalist: "How does Down syndrome affect you Heidi?" Heidi: "Well, it's an extra chromosome... I don't know the scientific stuff but i do know that it doesn't stop me from living a full life." and is used here with Heidi's permission].

WDSD Quick Win 4: World Book Day - Keep Reading!

On world book day I just wanted to check in with how we are progressing on our ‘That’s Not My....’ books. I posted previously about starting to read these with your baby early on and I thought it would be a good time to update you as to how Frida and I are getting on. I had to have a little break for a couple of weeks, but we are back at them now. I tend to pick one for two for a week and rotate them.

We read one most nights and she will also peruse one from her potty. She definitely recognises and enjoys them.

She now turns most of the pages herself, seeks out the sensory spot and we spend time looking at what is on the page. I’m trying to get her familiar with words like ‘find’, ‘look’ and ‘where’ and these books are great for that. I’ve started asking her to look for the mouse on each page and signing that to her as it’s a fun sign. She isn’t yet pointing to it but I’m staying strong and doing it for every page as I’m pretty sure it’ll come eventually.

WDSD Quick Win 3 : Dry Skin

Babies with Down syndrome do tend to have dry skin and I was aware of this when I had Frida but for some (baby brained) reason I didn’t take a good moisturiser for when she was born. I had some at home, but I failed to take it with me. Silly. Luckily I had packed nipple cream so I slathered that on to Frida's wrists and ankles for her first few days of life. When she was born they were so dry they were cracked and bleeding.

With the power of nipple cream they had soon healed and when we got home I started a twice-daily regime of covering Frida in coconut oil to add moisture back into her skin. It had the added benefit of giving her a massage and helping her learn that being touched on the face and body in a firm but gentle way was ok. She did not enjoy it at first but now she absolutely loves it when I put cream on her and she will giggle in anticipation as I get near her chin(s).

Until last month (at about 6 months old) regular coconut oil was all she needed to keep her skin really soft and she had no dry patches at all. I don't know whether it was the really cold weather, our heating being on or her skin changing but all of a sudden I discovered rough patches on her arms and legs. I had some E45 kicking around and switched - now her skin is softer than ever. From speaking to one of my friends whose little boy was born the week before Frida, his skin became drier at exactly the same time and she had to make the switch too.

WDSD Quick Win 2: It's snot fun

Our babies do seem to have 'smaller pipes' as my mum would put it. Or as someone writing in a book would put it, 'Specifically, children with Down syndrome have smaller midfacial areas, including nasal and sinus passages, which may contribute to frequent colds and sinus infections.' (Babies with Down Syndrome - A New Parents Guide).

I remember Ada having lots of colds when she was really young but she was a winter baby. So when Frida arrived in the summer I thought we might have a bit of time when she wasn't snuffly before I had to start shooting saline solution up her nose to give her some relief. But she got snuffly really quickly and it turns out she was not alone. I have read and commented on so many posts on the PADS New Parents Group about nasal congestion that I would say it is probably one of the most discussed issues and experienced by most new babies. A quick search today for 'snot' on the group brought up more from way before I was even pregnant with Frida. So the struggle is real.

We all want to make our baby more comfortable and the resounding advice seems always to be the trusty vapour plug and importantly, a snot sucker! I bought the aptly named 'Nose Frida' from a popular online retailer (probably parcel number 5 of 10 that week in lockdown....) and it has been one of my most used baby products.

Quick Wins for World Down Syndrome Day - Quick Win 1

Well doesn’t life get busy when a baby turns 6 months old? They properly interact with those around them and cause a lot of laughs, make noises you are sure mean something, play more, start to eat real food (a stage I absolutely love) and start to move. Frida has really made her mark on our family now and is so much fun to be with. She idolises her big sister and will bang the highchair for 'More Ada' at meal times to get her attention.

As the last few months with our fabulous Frida have whizzed by more 'quick wins' have come to mind and I’ve been listing them for a while waiting for the time to come to share them.

In the run up to March I have been preparing for the PADS21:21 2021 Challenge to celebrate World Down Syndrome Day and to raise important funds for Positive About Down Syndrome (PADS). On one of my training runs it occurred to me that I could share a 'quick win' each day; sharing fun tips and ideas to raise positive awareness about the joy of living with my girl who happens to have Down Syndrome and about the incredible community I am learning so much about, all the while building up a bank of quick posts for quick reference in the future.

Some are time savers, others are resources I have found useful and suggestions to think about which I have found have really made a difference. Some that I share are specific to having a baby with Down Syndrome (DS) as they address a few of the things that a baby with DS is more likely to experience than a typical child and some that will, I hope, bring comfort to anyone who is worried about their child's future.

‘My Loves’

A post about sharing news with the people you love.

This photo was taken a year ago and I shared it on Facebook and Instagram with the caption ‘My loves.’ It is Glenn and Ada at the last party we went to before lockdown. It reminded me of the importance of family and connection and in particular how good that made us feel when we told everyone about Frida having Down Syndrome.

We were up in Staffordshire visiting family and celebrating my brother in law’s engagement to his amazing girlfriend. Tom had invited the entire family to a surprise engagement party for Georgie and absolutely every single family member on my husband’s side was there. I am now so so grateful for this as it was the last time we saw everyone thanks to COVID. From Glenn’s side of the family Frida has only met her grandparents and only once. She’s still not met her aunts and uncle. It’s really tough on everyone. Thank goodness for video calling!!!

PADS 21:21 2021 - 21 miles in 21 days

Running 21 Miles in 21 days may not seem like a lot. It isn’t really. A mile a day? 2 miles every other day? I used to do that in my sleep, quite literally, in the morning as I ran to the train station.

But that was before. Before I was pregnant with Frida. Before the world was hit by COVID-19. Before I became partially responsible for 2 small people. Before maternity leave. Everyone knows maternity leave (should) equals coffee, cake, and plenty of lunch dates - most of which is done sat down. It has also been winter and I wind down in winter. Don’t we all? A tin of quality streets and a glass of red wine are far more alluring than a cold, wet, dark run. And don’t get me started on the mud! My favorite place to run is covered in mud!!!! Not safe to run at all. So I don’t. I started again at 12 weeks postpartum. My stamina was good and I got up to a week of 3k runs and then, well, stopped.

I didn’t and don’t beat myself up about it. The weather sucks, I’m enjoying cosy nights in with my husband, writing my blog, researching, reading and planning stuff for the girls and had decided not to add ‘stressing about finding time to fit runs in’ to my ‘to do’ list.

Get the Potty Out!

You may have seen constipation crop up on that ‘list’ of possible health conditions that you are presented with when given a diagnosis. You may spiral into a Google-vortex and come out with fears that your child will have Hirschsprung's, will need to have a stoma fitted, or is looking forward to a life on laxatives. Ok, so some of those things are possible. But I wouldn’t let yourself believe that they are likely. And even if your child does have complications with their bowel (as with most health ‘issues’ our kids might have) these things are treatable and generally there are frequent assessments to highlight any issues allowing you to address them quickly. Also, remember they are all things that can happen to a typical child too, but our kids will be more closely monitored for them.

I’d generally want to avoid an over-medicalisation of something, which could result in an unnecessary journey of clinical prodding, poking and intervention. But sometimes that is the only route to giving your child comfort and keeping them well. So always take medical advice if you are unsure about anything.

But what if it could be a simple action that we support our child to take that could help them whilst you wait for a referral, just in case there might be something that isn’t clinical that can resolve whatever the issue is? I’ve recently discovered one of those things and my mind has been blown.

Quick Wins - Sensory Play and Sneaky Exercise

All babies benefit from sensory based play. The science around how it supports development through play is sound and even in lockdown it is easy to find someone who runs baby sensory classes - showing how many people think it’s a great idea for their baby’s development.

But you don’t need to attend a class to get involved.

Other than more repetition with certain ‘games’, the use of Makaton to support play and a greater focus on her positioning whilst play, we’ve not looked at doing anything different for Frida whilst playing than we did (and still do!) with Ada. There is a lot that they can do together, even with an age gap of nearly 4 years.

Life with Matilda, An AVSD and a Feeding Tube

Matilda and Frida were born a day apart. Amy and I met on the Positive About Down Syndrome Great Expectations Group and were pacing our living rooms at the same time for a good few days before our girls made an appearance. We have never met, but have shared messages and experiences over the last 6 months. As I have no experience of either feeding tubes or heart surgery, I asked Amy to prepare a piece to explain their experiences, as she gives great advice to other parents in similar circumstances. Just two weeks post-op, Matilda is thriving and I think it is incredibly helpful for new parents to understand that whilst medical issues can be scary, they can also be dealt with relatively easily.

Matilda was diagnosed at birth with Down Syndrome. Following 12 week screening, we received a high chance result of 1:28 that she would have Down Syndrome so it wasn’t a huge shock. But I was a little worried. Questions ran through my mind; would she ever live independently? Would she be able to communicate with us all? What would her brother and sister think? Never did it cross my mind that she would also have a heart condition.

At her 20 week scan, I asked the sonographer to triple check everything that could be a marker for a baby with Down Syndrome and was reassured everything was within range and 'normal.' So when she went for a routine heart scan at 2 days old I was sure we would be all good and free to go home from the hospital that afternoon. She was feeding well, slept well, and looked just as a newborn baby should- beautiful. Matilda went into the scanning room whilst I waited out in a family room and she was in there what felt like an eternity. Having previously worked in maternity units and having accompanied the cardiologist into scans with patients, I knew something must have been found, as it was taking far too long.

Arthur - The Boy Who Stole My Heart

Facebook delivered me a very special memory this morning and one that has inspired me to write this post. The memory came from a collection of happy photos from 2014.

In my posts so far I have frequently mentioned that we know people who have Down Syndrome and how that contributed to us not being scared or fearful of our baby having Down Syndrome. Arthur-boy, now a (mainly) happy and (very) active 10 year old, who loves singing and playing the drums, is someone Glenn and I spent quite a bit of time with when he was a baby and toddler.

I’d grown up with his family in a small village, and Arthur had come to our wedding the year before and was, at least from where we were sitting, impeccably behaved and charming. I mean, he ran round their table rather a lot and sat on the table, but who wants or expects a kid of nearly three years old to sit still throughout the speeches anyway?

Educating Emmerdale

Whilst I haven’t felt able to say much more about the Emmerdale storyline (in addition to my original post) as I have not watched it, I’ve tried to share positive stories and vibes about living with someone who has Down Syndrome across social media wherever possible.

‘Educating Emmerdale’ is also doing just that. Family members of people with Down Syndrome have rewritten some of the things said by the characters in the storyline I have mentioned in previous posts, in a way that reflects reality more accurately. They start with 'Dear Emmerdale' and address things like the use of language by professionals, the worries that the couple express when discussing their decision, things that the couple who have a child with Down Syndrome might have actually said in response and regularly end with the message ‘which you would have known, had you done your research’.

This is not about the choice made by families who have received a prenatal diagnosis of Down Syndrome, it is about the information given around diagnosis of Down Syndrome and the way it is presented. The alternative scripts are prepared by people with lived experience and those featured make clear that Emmerdale could have used this opportunity to present the information and conversations differently, in order to use their platform to educate viewers as to reality.

Welcome to the world

I just came across my Facebook post from 6 August 2020 in which I shared with our wider social media world the fact that Frida had Down Syndrome. I know so many people do, but I am so glad we didn't ever feel sadness about her diagnosis as it has meant that we have been able to enjoy every bit of time with her without worry or concern. Frida is nearly 5 months now and smiling huge smiles, especially when she manages to pull herself up into sitting position (which she does a lot now), trying to roll over, very close to laughing out loud (channeling Auntie Vinnie with a solid silent laugh at present), chatting away, being subjected to very strong cuddles from her big sister and remains an utter joy to be around.

Frida Luna Rose is, so far, at the great age of 2 weeks, gentle and calm but downright grumpy and feisty when she really wants something. She is settling in well to the rhythm of family life, feeds well and sleeps well. She wees all over her new nappy as soon as it is put on (generally when her dad does the changes!) She is manhandled by her big sister and the dog just wants to be close to her all the time. She also happens to have Down Syndrome.
We discovered that she had a high chance of having DS when I was 14 weeks pregnant and consequently we were looked after closely by the Fetal Medicine Unit at St Mike’s in Bristol and by my amazing Community Midwife, who ended up being with us when Frida was born.

Quick Wins: 'That's Not My....' Books

The ‘That’s Not My...’ books by Fiona Watt are really fun to start introducing into nighttime routine from a really early stage. We did this with Ada and whilst there might not be a direct link, she really loves her nightly story time and picks up books throughout the day to leaf through herself and even has her own stack of book in the loo that she will happily 'read' to herself. At the age of 4 she has started reading a few words and has a real love for it and seems quite keen to continue to learn to read. We wont know for sure whether reading to her as a small baby has impacted on her ability now, but it won’t have hurt, at the very least. So, as with everything, we’d planned on doing the same with Frida from an early stage.

I think I started around 6 weeks, , stopped for a couple of weeks whilst on holiday then started properly when she was 10 weeks.

At first she’d shout at me and ignore the book as she was so hungry or tired and didn’t give a monkeys about which lamb was hers. But, I persevered and around 12/13 weeks, I noticed more engagement and focus. Her hands wouldn’t pull away as I directed them towards the material on each page and she definitely looked at the book as opposed to resolutely blanking it and / or getting mad at me for delaying the last feed of the day! At four and half months she is now sitting in front of me so I can free up both hands for signing (see below) and reaches out to touch the sensory part of each page we read. She recently seems to be wanting to try and turn the pages, too.

Quick Wins

It is well recognised that kids with Down Syndrome will have a learning disability and that their development may be slightly delayed. Within that, as within the population as a whole, the timescales for meeting milestones are as unique as the individuals themselves.

The important thing to know is that most kids with Down Syndrome will hit their developmental milestones (some will even hit many at a similar time to a typically developing child - whatever that is) and can and will learn everything they need to. They may just take longer and will need additional support to get them there.

Everything I have read about supporting communication and movement development for kids with Down Syndrome comes back to one clear and consistent message - start early! It even has it's own term 'Early Intervention.'

Quick Wins

It is well recognised that kids with Down Syndrome will have a learning disability and that their development may be slightly delayed. Within that, as within the population as a whole, the timescales for meeting milestones are as unique as the individuals themselves. The important thing to know is that most kids with Down Syndrome will hit their developmental milestones (some will even hit many at a similar time to a typically developing child - whatever that is) and can and will learn everything they need to. They may just take longer and will need additional support to get them there. Everything I have read about supporting communication and movement development for kids with Down Syndrome comes back to one clear and consistent message - start early! It even has it's own term 'Early Intervention.'

I will talk about this in far more detail in longer posts, but as a frazzled parent in the early postnatal days, a busy parent once your baby starts moving a bit more and you start your weaning journey, this set of posts are for you and for those times when you are trying to work out what you can do to give your baby the best start. I will share some quick and easy (and fun!) things to do with your baby that should make a real difference to them in the long run and instantly make you feel like you are totally on top of this parenting lark!

A lot of these activities are things we did with our first child, and we regularly curse ourselves for giving her all of the skills to run rings around us... She is 4 and is a very skilled negotiator and storyteller. I would say that if you are prepared to do these things frequently, repetitively and over a sustained period of time, the benefits will be huge.

In the first 6 months I really don't think most babies with Down Syndrome need anything more than a typical child of their age (unless of course they have additional health needs). What they are likely to need is the support for learning a particular task over a longer period of time with more frequent reminders. So be prepared to get very familiar with 'That's not my....' books! When they hit 6 months, at least for us, you may find that life gets a little busier as you introduce food, they start to engage in play more and you start to focus on their early development and a bit more. You may have more appointments to attend and might be thinking about applying for Disability Living Allowance.

National Breastfeeding Week 2020: My early experience of feeding Frida

I was asked to prepare a piece about my experience of breast feeding when she was about three weeks old by 'Positive About Down Syndrome.' It was shared pretty far and wide and had some lovely responses, including that it was likely to have helped some people with the start of their feeding experience. The piece was posted on Facebook on 6 August 2020 and is reproduced in full.

Jess Flanagan is mum to Ada (3 and a half) and Frida (2 weeks) who has Down Syndrome. She shares her positive experiences of breast feeding both her girls.

For me, it was never an option not to work hard to breastfeed my babies. The health and developmental benefits for baby are unrivalled, and it is so much cheaper, and less time consuming (once in the swing of it, of course)! When pregnant with my nearly four year old, my mum bestowed upon me the gift of positivity around breast feeding. whenever I said ‘I’ll try’ she corrected me and said ‘you will.’

Wouldn't Change A Thing : spread the word!

There has been so much written, discussed and contemplated about the Emmerdale storyline where a couple decide to terminate their pregnancy following a prenatal diagnosis of Down Syndrome in the last few weeks. Discussions have been taking place on TV, radio and so many of the families I have 'met' in the short period of time I have been a more active member of the 'Down Syndrome Community' have had articles published in national and local press. A fantastic journalist I have come to admire greatly made reference to it in a recent piece in the Guardian.

I knew it before but I know even more now, the Down Syndrome community is tough, passionate, articulate, resilient and tenacious. It is also full of love and support. Using their platforms, many people have fought hard to encourage Emmerdale to change the storyline. Emmerdale has defended it's storyline, often citing the fact that there is already a character with Down Syndrome in the soap. This is not, in my view, good enough. Do you think it would be an acceptable argument against introducing another LGBTQ+ character into a show because 'there is already one'?

The first couple of episodes in the storyline have now been aired, with tonight's being where the couple find out that there is a high chance that their baby has Down Syndrome. I don't watch it (and won't start now), but it is my understanding that the first words that are spoken by the female character when receiving the news are 'Down Syndrome?' shortly followed by questions about termination.

1:49 chance - We hit the jackpot

The more people I speak to who have children or family members with Down Syndrome, the more I appreciate quite how hard some people find the news that their child has Down Syndrome. I feel lucky that we knew enough about Down Syndrome not to worry too much. This is the big issue; people don't know enough about what life really is like. They have some vague picture of thick rimmed glasses, ill fitting clothes and bad haircuts, but that was just the 90s, right? It is all outdated and things have changed so much. Society's perception needs to change, too.

What I believe life will be like having a child with Down Syndrome is that it will be challenging, fun, difficult, joyful, exhausting, thrilling, stressful, wonderful - but that is just life isn't it? So far, Frida is pure joy (except for this evening when she was so tired she was sad and a bit shouty) and we are excited to watch her and Ada grow up together. So far, so amazing!

So if you know someone who has been given a high chance that their baby may have Down Syndrome, or have just given birth and received a post natal diagnosis, please do refer them to the wonderful Positive About Down Syndrome private groups. Or ask them to get in touch with me, I would be more than happy to share any information and answer any questions.

My view on the Emmerdale storyline

Emmerdale is running a story line where a couple decide to terminate a pregnancy when they receive a diagnosis of Down Syndrome. I don’t watch soaps, but I do have a daughter with Down Syndrome and I do find myself feeling motivated to comment on big issues that happen in our community. It might help. This is a big issue for people with Down Syndrome and a chance to talk about some of the more difficult issues that arise because of what most people think when they hear ‘Down Syndrome’.

It took me a while to be able to articulate anything. Sometimes it does. There is always a mad rush to respond to the story. I get that. Strike whilst the iron’s hot. But with a 3.5 month old and a four year old at home whose birthday we’ve just celebrated, I wanted to have time to think and reflect. No bad thing. I didn’t even know whether I wanted to put something out here, but I’m pulling together some pieces that will eventually be put up on a website that’s in development, with the main aim of supporting parents with young kids with Down Syndrome to navigate the ‘system’ so I thought I’d test out some writing. It’ll end up on there eventually.

Doing my job, I’ve learnt to see one issue from many view points. This means that I usually take a while to work out how I want to present what I feel about something, especially when it is controversial.

Day 29: Did You Know? Love and Encouragement.

With tenacity, encouragement, and most of all LOVE, children with Down Syndrome will blossom.

Just like any child. We’ve seen first hand the fruits of our early support and love we gave to Ada. She is now 4 and happy, secure, confident, determined and imaginative. She is also starting to read short words and sounds out letters as she has a love for both.

We may need to support Frida in a slightly different way when it comes to learning (my brother and I needed different support to learn so not any different to any other siblings), but the way we will love her and provide her with the tools to be imaginative and happy will be exactly the same! So far so good. She smiles at anyone who interacts with her and is definitely in love with her family.

Day 28: Did You Know? Happier.

At least 90% of families whose lives have been touched by Down Syndrome say they are happier for it.

I read this in a couple of places when I did my research when we received our high chance result. The brilliant Sally Phillips talks about the humour her brilliant so, Ollie, has brought to their lives. Frida is only little but so far so good. 3 months in and we are loving having 2 gorgeous girls and watching them grow around each other. Sometimes quite literally when Ada gets her hands on Frida. Frida seems to adore the very strong cuddles, though, so long may they continue.

Day 27: Did You Know? Twins!!!

It is estimated that identical twins with Down Syndrome occur at the rate of 1 or 2 in a million pregnancies and non-identical twins at the rate of 14 or 15 million.

We have always wondered whether we would have twins as my husband’s mum is an identical twin and I’ve also got twins in my family back a generation or two. At one or two points we have even thought we might enjoy the challenge of twins... I’d pondered having a third but my husband has suggested that it might just end up with us having 4 kids and I’m not sure we fancy that parent:kid ratio to be honest...

Day 26: Did You Know? When You Know, You Know.

People who get to know someone who has Down Syndrome often develop a strong capacity for love and acceptance for people who are different. We definitely need more of that in the world.

I’ve grown up knowing kids and adults with disabilities and have ended up in a career based around advising people about the legal and human rights of individuals with disabilities.

I love my job and the best bit is getting to know and help a diverse range of people at a time in their life when they are usually in crisis. Throughout my career I’ve experienced some really heart wrenching moments of sadness and many moments of joy with some brilliant people, many of whom have a learning disability, or mental disorder.

Day 25: Did You Know? Work, work, work, work, work!

People with Down Syndrome can have jobs and be very productive. They are valuable members of the community and contribute to society, making their own way in the world.

It actually makes me sad that this is something people need to be made aware of. Anything is possible.

Check out Made Possible and start following people with disabilities on social media. You’ll see that we are all more alike than different. I share and retweet a lot on Twitter @Jess_S_Flanagan.

*EDIT 19.12.2020* I hope to have some incredibly exciting news to share around this particular issue very soon. Watch this space!!!

Day 24: Did You Know? Palm creases and sandal toes.

About 45% of people with Down Syndrome have a single palm crease in their hand instead of 2. This is because they did not hold their fist clenched tight in the womb due to hypotonia.

I wasn’t aware of this before I did some reading whilst pregnant. As far as I can tell it doesn’t cause any issues and is just another possible lovely little feature our babies might be born with. Frida doesn’t have a single palm crease, but does have a sandal toe gap between her big toe and second toe on both feet (see website logo for print of her foot at about 4 weeks old). It’s super cute and will make the annoying first few wears of flip flops each year less uncomfortable for her!

When I posted this on Facebook, three friends commented that either they, or family members without Down Syndrome had a single palm crease on one or both hands, so it cannot be all that uncommon across the general population as a whole!

Day 23: Did You Know? Equality.

People with Down Syndrome want to be treated the same as everyone else.

People with Down Syndrome may need slightly different support to people who don’t have Down Syndrome, but we all need support of some description and it’s always different to the support someone else needs. As an example, we couldn’t have got through the last few months as comfortably or as happily without the support of my parents, others had the support of child care in another form, and others didn’t need it at all. That in itself is not treating someone differently. I think Saba Salman explains this brilliantly in the introduction to Made Possible, a book of essays written by brilliant people like the performer Sarah Gordy MBE and Shaun Webster MBE. Opportunities shouldn’t be limited due to disability (and this is actually the law!) so any support required for someone to do what they want and to achieve what they want to achieve should be available. The fact that it is not is why me and many other social welfare / human rights lawyers are always so busy!

Day 22: Did You Know? Better?

People with Down Syndrome can help you become a better person.

I think ‘better’ is a bit of a strange choice of words for this one. Maybe a catch all for words like, ‘patient’, ‘calmer’, and for me may mean that I slow down and appreciate the small things a bit more frequently. ‘Better’ will mean something different to everyone. It is also worth remembering that all children bring something special to their community and that is no different when that child happens to have Down Syndrome.

Day 21: Did You Know? Down Syndrome Awareness Day

World Down Syndrome Day is celebrated every year across the world on March 21st. 3.21. Get it?

We knew on 21 March this year that our bump contained a little extra. At that stage we didn’t want to share that news publicly on social media. Not because we were worried or scared but because we wanted to tell our friends in discussion as opposed to as a broad announcement. We had so many wonderful conversations and discussions around that time and were so lucky to be met with love, respect and excitement from everyone.

Day 20: Did You Know? Maternal age

80% of babies born with Down Syndrome are born to mothers under 35 years of age because this age range gives birth most frequently.

There are quite a few mums on our Positive About Down Syndrome New Parents group who are young, many in their twenties and I can think of more than one who is under 20. There are many mums who are in their thirties and a good few in their forties. From the reading I did in the early days of my pregnancy, I learnt that the chance of having a baby with Down Syndrome doesn't, contrary to popular belief, increase with age. I also remember a conversation with the screening midwife where she confirmed that age was a very small part of working out the 'chance' (I am pretty sure she said risk).

So a plea from me, when you first learn that your baby has a little extra, you may feel guilt that if you hadn't had a baby in your late 30s they would not have had Down Syndrome. Firstly, you are one of the lucky few to have a baby with Down Syndrome, whatever your age, and second, my understanding is that age has nothing to do with it. There is enough mum guilt flying around - don't add things you have NO control over into the pot. Lecture over. Enjoy your baby, however young or old you are.

Day 19: Did You Know? Tongues.

Sometimes people with Down Syndrome might stick out their tongue. This could be because of a small mouth, slightly larger tongue or, most likely, low muscle tone in the mouth (hypotonia) or sometimes to help them breathe more easily. Speech therapy can help people with Down Syndrome overcome this... BUT we can still stick our tongue out at you if necessary.

Frida’s tongue does poke out when she is relaxed and sleeping. It looks like a combination of her having a smaller mouth and lower muscle tone. It also pokes out a lot and flickers quite aggressively (and alarmingly quickly) when she is demanding food! Luckily, her ability to feed does not appear to be at all impeded by whatever it is causing it. The advice I have read is to poke it back in when she’s resting to encourage her to do this of her own accord as she grows up. Not for any other reason other than to encourage proper breathing so she doesn’t just rely on her nose!

Day 18: Did You Know? Sorry Not Sorry.

Please don’t tell us you’re sorry our child has Down Syndrome. There is absolutely nothing to be sorry for.

This is part of my feedback to the hospital, specifically to the screening midwife and fetal medicine consultant. I remember asking our consultant not to use ‘sad news that...’ when he confirmed Frida was likely to have Down Syndrome. I stopped him before he continued and told him that it wasn’t sad news and we didn’t want him to approach it that way. He did apologise and said that it was a difficult conversation to have as not everyone has a positive response. I wish I’d said that you won’t get many positive responses if you start off with ‘sadly’.


Day 17: Did You Know? Family Features.

People with Down Syndrome do share some common features. However, most will resemble their own family more than they resemble each other.

Looking at photos of Ada around Frida’s age (3 months!), they are really similar. She also looks like me. She looks like our grandads when she’s in full cheek mode which can be pretty hilarious and disconcerting in equal measure.

It’s very rare that I think about Frida having Down Syndrome when I look at her as she just looks like her - beautiful, cheeky, smiley and most frequently with a boob attached.

Frida is Frida.

Day 15: Did You Know? Love and Marriage.

People with Down Syndrome can have close friends, go on dates, fall in love and get married.

In all honesty, other than any health issues she may face, this was my only real worry. I worried that my unborn child might not marry or have relationships. I know this is rushing ahead before I even knew her, but it did pass my mind as a worry.

I think it probably arose from the fact that I have dealt with quite a few cases where someone’s capacity to marry has been called into question, so I see the sharp end of any disputes and the impact they have on the individuals at the centre of it all. However, neither sex or marriage are particularly complex decisions so most adults with learning disabilities do have capacity to marry (thankfully, because if someone doesn’t have capacity to marry or to have sex, they can do neither lawfully.) but it’s not a fun process to go through nonetheless.

But as soon as I started reading and learning about the lives of people who have Down Syndrome, I learnt of so many wonderful couples with Down Syndrome who have been married for years. I read about the episode in The A Word where Ralph and Katie get married (watched it this week, actually, and cried throughout at how beautiful it was and how proud Ralph was with himself that he’d done what he’d wanted to do) and watched as Heidi Crowter (an amazing young woman, activist and self advocate) married the love of her life in their live streamed ceremony just as lockdown lifted.

Day 14: Did You Know? Hearts.

Around half of babies born with Down Syndrome will have some kind of heart condition. Often this can be corrected by surgery. But be careful, these guys will steal your heart given half a chance.

We had 2 fetal cardiology scans and were advised Frida didn’t appear to have a heart condition. On reflection, I can see that we were rushed through these appointments before she was 24 weeks... I now know that even if she was born with a heart condition, the chances of any surgery being super successful are very high. So many of the babies I have the pleasure to see grow through the Positive About Down Syndrome New Parents group have had surgery and are flourishing. Even those who are waiting for surgery are doing really well. Frida had a scan when she was 3 weeks old and she has a very small hole between the top two chambers of her heart. I did not realise but most babies are born with this and it closes soon after birth. We have a follow up in a month or so to check if it has closed. Even if it hasn’t, it is unlikely to bother her. She doesn’t seem to have any issues with her energy or problems feeding (see recent posts for how much she LOVES her food), so it is unlikely to be causing her any issues, whatever they find. But I totally agree with the part of today’s message about her stealing hearts.

Day 13: Did You Know? Emotions.

People with Down Syndrome are not always happy. They have the same range of emotions the rest of us have. Tantrums and tears, excitement or sadness, happiness and shyness.

Exactly right. Because every single human being is unique and has their own character and personality. Frida is generally pretty chilled but shouts when she doesn’t get something quickly enough or if someone annoys her and absolutely loses it when she gets in a bath or is overtired. We are enjoying a huge amount of smiles and a lot of chatting but I don’t think she’d last long in our house if she didn’t learn quickly how to assert herself.

Day 12: Did You Know? Age.

In 1983 the average life expectancy of a child with Down Syndrome was only 25 years old. Today, many people with Down Syndrome live to over 60.

I read an article last week about a chap with Down Syndrome passing away at the age of 78. With early intervention and ever improving health care for our little ones, I can see that average age continuing to increase, along with the quality of their life lived.

There are debates to be had about the quality of institutional care for some adults with Learning Disabilities, and improvements required in respect of inclusivity, but neither are for a Positive About Down Syndrome post. Those things will follow.

Day 11: Did You Know? Love.

Looking after a child, young person or adult with Down Syndrome can be hard. But every parent, brother or sister loves them for exactly who they are.

Looking after my amazing, spirited, talkative, bouncy, funny and intelligent 4 year old is challenging (mainly because ‘no’ is her favorite word at the moment) but I love every bit of her. Looking after and loving Frida will be no different. As I’ve said before, and I’ll say again, Frida is Frida and we love her very much.

Day 10: Did You Know? People with Down Syndrome Lead Happy, Independent and Successful Lives

People with Down Syndrome can be actors, musicians, business people, TV stars, learn to drive and even climb Mount Everest.

Never underestimate and never count people with Down Syndrome out.

I can’t wait to see what Frida wants to do when she grows up and I really don’t have any worries about her options being limited. When we first discovered she was likely to have Down Syndrome I found a video featuring the very talented performer Sarah Gordy and was so entirely absorbed by her and felt, at that moment, the world was Frida’s oyster and absolutely everything was going to be ok. I’m a huge fan! If you want to find about more about the brilliant Sarah Gordy, read her essay in Made Possible (edited by the brilliant Saba Salman) and prepare to be impressed by her.

I have shared lots of posts on social media about people with Down Syndrome doing great things, following their dreams and achieving great success. Whilst we need to be careful not to patronise someone by saying they are inspirational just because they have a disability, they must be shared and celebrated because representation matters! Representation in the arts, in business and in all industries will really help kids and young adults realise that they too can achieve their goals and dreams if they want to. It builds pathways and that is where the label ‘inspirational’ should come from. I can’t wait to introduce Frida and her big sister to Sarah’s work on the screen and maybe even a live dance performance in the future.

Day 8: Did You Know? Down Syndrome is Not a Spectrum

People with Down Syndrome cannot be ‘more Down’s’ than another (ugh, horrible phrase) however there are three different ways Down Syndrome can occur depending on how the cells divide when first conceived.

Trisomy 21 - 95% of cases - All the cells of the body have the extra 21st chromosome.

Translocation - 4-5% of cases - An extra copy of chromosome 21 is attached to another chromosome.

Day 7: Did You Know? You Cannot Catch Down Syndrome

Down Syndrome is a condition or a syndrome. It is NOT a disease. You cannot catch it.

Genuine question: do some people believe that you can catch Down Syndrome?

I’ve not got much to say on this one as it never occurred to me that you’d need to state something so blinking obvious... so instead I’ll share that we have had a very lovely ‘Frida and me’ day with lots of smiles, chats and cuddles and I’ve loved every minute.

Day 6: Did You Know? DONT SAY 'SUFFER FROM'!!!!!

People have Down Syndrome. They do not suffer from it and are not afflicted by it.

Day 2 sparked a conversation about this on my Facebook page on this issue and how it applies to many illnesses, disorders and disabilities has been a real problem for me for many years (journalists and judges are amongst the worst offenders!!!). People have Down Syndrome, they don’t suffer from it. Suffering is very subjective and so far, other than when she is STARVING because I haven’t fed her for over an hour, Frida hasn’t suffered for a minute of her life!

Day 5: Did You Know? 1 in 700.

Around 1 in every 700 babies born in the UK has Down Syndrome. This makes it the most common, naturally occurring, chromosomal condition. This is true for all nationalities, ethnic groups, and classes.

1 in every 700 babies in the UK is born with Down Syndrome and if you speak to most parents of kids with Down Syndrome they will tell you that they feel like 'The lucky few'. So why doesn’t that message translate to all clinicians delivering a diagnosis, or high chance result? I’m spending time, as are many others, trying to change the conversation and language around diagnosis. My feedback to the hospital includes Positive About Down Syndrome leaflets and information. Whilst I didn’t have a bad experience, I did have to explain a couple of times that we were not sad to have a high chance result and that I wasn’t devastated when the diagnosis was confirmed when she was born. I also had to confirm for certain that we wanted to continue with the pregnancy. Had I been, maybe the concerned faces and sadness conveyed by clinicians might have led me to be more fearful, not less.

Day 4: Did You Know? The History Behind The Magic.

Down Syndrome is named after Dr John Langdon Down. He identified the characteristics of the syndrome in 1866. We wish his name had been Dr Sunshine.

The history behind the magic. A long article, but informative and shows just how far we have come in terms of language (thankfully!), but also that John Langdon Down had some great ideas to support and integrate, rather than segregate and hide away, people with Down Syndrome and that they would benefit from early intervention type support - hurrah! I hope to post much more about the benefits of 'early intervention' in future posts.

He also appears to have been an active supporter of Women’s Rights. What a forward thinking chap he was.

Day 2: Did You Know? Language Matters!!

We prefer ‘People First’ language. A person has, or with Down Syndrome. Not a ‘Down’s boy’. Our children are children first and Down Syndrome is just a tiny part of who they are.

Frida is Frida.
She HAS Down Syndrome.
She is not A Down Syndrome baby.

This is a good one and very simple. Please don’t get upset or defensive if I correct you if you say ‘Down’s children’. Just know that the very slight change in language makes all the difference to a person with Down Syndrome because DS doesn’t define them, it is just a part of who they are.

Day 1: Did You Know? Low Muscle Tone.

Some children with Down Syndrome have low muscle tone, called hypotonia. This means it can take them longer to talk, eat and walk. But they work extra hard to build up their muscles and they all get there in the end.

We are seeing a physio in a couple of weeks to see what base line exercises we can do with Frida to support her to work through her gross motor skills (like, rolling, sitting, crawling then walking) in a way that is right for her and ends up without her getting into bad habits that might cause her pain later down the line. It’s not about her hitting milestones quickly, it’s about hitting them right.