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Category: Down Syndrome Awareness Month

Daily posts from October 2020, sharing facts and information about Down Syndrome to increase awareness and spread positivity. Photos taken each day from ‘Wouldn’t Change A Thing’ Charity. I originally posted these on Facebook and Instagram.

#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’:

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 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 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.