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.

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].

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.

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.

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.

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.

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.

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.

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.