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It's the end of Down syndrome awareness month... which means the end of my daily posts and photos of Emma   :( I hope I've been able to answer some questions, share some knowledge, and influence your perception of what having Down syndrome might mean. Emma is amazing. She's just like every other child in that regard - their potential is only limited by their surroundings. I mentioned that I would change the world for her, and I know that won't be easy. One person at a time is   all it takes, so I challenge you to make one person smile tomorrow. Do it again the next day, and again the next. This is my absolute favourite photo. There... I made you smile! Off you pop to pass it on   :)

Wonder. A year ago this was my chubby cheeked girl... I look at her now and wonder where my baby went! I wonder why I spent so much time worrying about the things she would do and what people would think. Now I wonder how she’ll surprise me next. I wonder what kind of a person she will be. I wonder who her friends will be and what she’ll love about life. I wonder if people realise she is who she is because she has Down syndrome, not in spite of it. I wonder how I got so luck y. 💙 💛 💙 💛 💙 💛 💙 💛 😘 😘 😘

I had another request to answer a few questions so will try to address the ones I can remember offhand without going in and out of the posts on my phone... Do we have some sort of insurance in case something happens to us so that Emma can access everything she needs (like carers)? Yes, we do. We are so fortunate to have the NDIS here in Australia. It’s an insurance service for people with a disability. Everyone who pays tax pays the premium and everyone who has a disability is entitled to claim against it. Emma already accesses it for therapy, and as time goes on will access it for travel training, social training, and anything else she might need to function as a member of society. It includes carers to take her places or help support her in daily life when she lives independently. It doesn’t mean that you pay for her to go to the movies with her friends, but you might pay for someone to catch the bus with her for a few months until she learns where to get on and off, an...

A question that was asked yesterday was 'what can we do to support you as a family, or Emma?' Firstly, you need to remember that we are just the same as any other family. All children have things that they will struggle with, regardless of whether they have a diagnosis or not. All parents will want to talk about their kids' struggles and successes, and usually all they want is for someone to say 'me too' or 'that's so cool'. High five for friends who listen, empathise, relate, and celebrate! Emma might need a bit more time to work things out.. so if you're expecting that at a certain age she'll be doing certain things, you're going to need to throw that out the window. We have! There are some things that she's behind on, but there are others that she is the same or ahead of her peers. Don't assume that she CAN'T do something - always assume that she can. Speak to Emma first, if it's a question for or about he...

‘I wouldn’t change you for the world, but I would change the world for you’ I don’t know who wrote this, but I live by it. Our world is very different since Emma came into it and I hope that by sharing this world with all of you I change your perception of people who may be different to you. It’s Down syndrome awareness month, but it doesn’t have to be October for you to ask a question and for me to find out the answer. There are only a few days left, but it’s never too late to learn something new. Are there any questions that you have for my last few posts this month?

Don’t let her sweet face fool you... this girl can spot a softie a mile away and manipulate her way into getting exactly what she wants! Emma is a massive problem solver - if there’s something she wants she will do everything she can think of to get it. Just because a person has a disability, you can’t assume they don’t have abilities. Many people with a disability understand much more than society gives them credit for. Talk, listen, respect. Just like you would anyone else.

How fitting that I forgot to post this yesterday... People with Down syndrome have an extremely high chance of developing Alzheimer’s disease. There’s a protein that is made by one of the genes in chromosome 21 that is linked to Alzheimer’s disease. Because people with Down syndrome have 3 copies of this chromosome, they produce more of the protein. This protein builds up in the brain and causes Alzheimer’s. Now that it’s known, studies are being undertaken to block the protein, or reduce it. Just another thing to look out for...

Support networks mean so much to me. I wouldn’t be as confident in my ability to parent Emma if I didn’t have my army behind me. My friends who have typically developing kids are just as important as my friends who have kids with Down syndrome. Both give me a sense of ‘normal’, the reassurance that none of us have any idea what we’re doing, and the ability to be completely honest about how I’m feeling. As a person, I have never felt so lost as I have these last 18 months. I  feel like I’m stuck, like I’m not achieving anything, that this is not what I expected being a Mum. So many Mums feel this way, but we just don’t talk about it enough. We all love our children with every fibre of our being, but that doesn’t mean that sometimes we wish things were different. It’s freaking hard being a parent, and that will never stop. Having a support network around you, even if it’s just a chat every so often or a quick catch up while we wrangle the kids, is amazing. I am so thankful fo...

Emma’s hearing is a hot topic! When we had her tested the results were inconclusive as to whether she can or can’t hear properly. The tests are age-based and she’s just not developmentally the same as her peers, so she fails. We were watching TV today. It’s usually on in the background because two people in a house all day gets pretty boring when only one of them carries on a conversation so don’t get me started on the whole ‘screen time’ thing. Emma loves ads. She especiall y enjoys the ones with music and has a boogie if she’s watching. It’s cute. Ellen is also mesmerising because she dances too, plus there is A LOT of clapping on her show and it’s our new favourite thing to do so here we were watching Ellen and I was testing Emma’s hearing as I love to do. Photo 1: Ellen is enthralling Photo 2: I call out Emma quite softly and she turns Photo 3: She sees I’m holding the phone so does a proper smile for the camera Not convinced on the whole ‘hearing problem’ thing but I sti...

Communication is sometimes difficult when your child has a developmental delay. Dave and I have just spent a couple of days doing a Key Word Sign course, so that we can use this in conjunction with other assistive communication techniques for the future. Often kids with a speech delay get really frustrated when you can’t understand them, so they either shut down or challenging behaviours escalate until someone works out what it is that they are trying to say. We want Emma to  talk, but we also want her to be understood by everyone. We’re in the process of getting her a PODD book - it’s a book that has pictures so that you can point your way to a sentence. It will be full of things she will usually encounter and once she’s learnt to use it she will be able to tell anyone anything. The Key Word Sign is similar to Auslan - it uses much of the same signs BUT unlike Auslan we talk the whole sentence or phrase but only sign the key words. ‘Do you need to go to the toilet?’ will be ...

One of my fears for Emma was that she wouldn’t understand how to be social, how to take turns, how to laugh and play. I’ll just leave this here. She nailed it! I really need to stop posting videos and deleting them straight away. Thanks again FB!

People often think that having a child with additional needs places a strain on relationships and leads to divorce or relationship breakdown. Research has shown that this is not the case. Parents of typically developing children are more likely to part ways than those of children with additional needs. Marriage, like all long term relationships, is hard. Parenting is hard. Parenting a child with additional needs is hard. Having a common goal, drive, or direction is one of t he most important parts of our marriage and it’s certainly helped us to stay on track. My husband is my biggest supporter, Emma’s biggest advocate, and he will do anything to make us both happy. I like to think that I am the same for him. I am grateful that he has my back and that he takes the time to listen when I speak, and holds me when I cry. I cry a lot more than I used to, worry more than I used to, and sleep much less than I used to. He’s there. He may not have any idea what to say or how to fix it,...

Why is it called Down syndrome? John Langdon Down was the first person to notice that there were patients in an institution that had some similarities in their physical features, and other traits, and so investigated these similarities. He called these people ‘mongoloids’ and that term was used widely for about 100 years. In the 1970s the medical profession began using the name ‘Down syndrome’ as an acknowledgement of his research and discovery of many of the markers which ma y identify a person with the condition. Interestingly John’s son continued his father’s research and then went on to have a child with Down syndrome himself! In most recent times, the term Trisomy 21 has emerged as a preferred name - it describes that there are 3 copies of chromosome 21 and leaves behind the negative perception that the word ‘Down’ can create. Our family tends to use the more common Down syndrome as that’s what most people know it as. All of Emma’s therapists and doctors also use this te...

Myth: Older women have babies with Down syndrome. Fact: The average age of mothers with children that have Down syndrome is closer to 30 than 40!! The simple fact is that more women in the 20-35 bracket have children, so it makes sense that a larger proportion of those women will have a baby with Down syndrome. I was 32 when Emma was born. Not old by any standard! My chance of having another baby with Down syndrome is a bit higher - one because when I get pregnant again I will be older, but also because my body has carried a pregnancy to term that had a chromosomal anomaly. It is thought that only 30% of pregnancies with a chromosomal anomaly make it past the first few weeks. The body recognises that the pregnancy is ‘different’ and may not support it. A lot of miscarriages are thought to be the result of chromosomal anomalies, and there is also a huge rate of termination worldwide for these anomalies.... so my body recognised that Emma is fucking fabulous and that the world ...

People with Down syndrome are generally visual learners. This means that they may find it easy to learn to read because they make the associations between letters and numbers and understand how words form and fit in a sentence. Emma loves books. We will read for ages... she turns the pages and makes faces and ALWAYS turns the book over at the end to read again. She’s just started grabbing my finger and using it to point to pictures - I’ve been modelling this, especially coun ting things on the pages, for a few weeks now. She’s a bit too excited about lifting flaps though so most of our books with flaps are wrecked... there is no surprise in ‘Dear Zoo’ any more as the animals don’t have their boxes to go back into!! We’re starting to try to make animal sounds and that’s interesting, especially since I don’t know what sounds a lot of animals make! These books have tricky animals in them!! Anyway, we expect Emma to be able to read at roughly the same time as her peers. Writing may...

More alike than different. Emma is more like us, her family, than she is other people with Down syndrome. If you know me, she looks like me. If you know her Daddy, she looks like him. She has a smile that looks exactly like her Great Gran. It makes me smile as she’s no longer with us and reminds me of her. She has a dimple just like her Great Aunt  Annie Mac . Her cousin Daisy is almost a year younger and they are very similar. I was basically bald until I was 3 and she defini tely gets that from me. Don’t even get me started on mannerisms because her stubborn streak has so many branches on our family tree that it’s hard to tell who that’s come from!! She has almond shaped eyes. This is a characteristic of Down syndrome, but she doesn’t look exactly like any child I have seen with Down syndrome. All of our friends that have Down syndrome look remarkably like their parents and siblings. She’s more alike than different.

At every single doctors appointment since 9 months, they’ve asked if Emma claps. It’s a milestone. One this kid has refused to do!! She’ll have a toy in each hand and clap them together. She’ll grab your hands and clap them together. She looks at us like we’re from another planet when we ask her to clap... But last week, with no warning, she just started doing it. She is so proud of herself every time, and of course we’re equally proud of her. When she was born we were told that Emma will do everything every other child will do, just in her own time. She certainly does make us wait, but it is so much sweeter when it happens!! Click to see the amazing Emma doing her clap practice. Thanks FB.

‘Put your tongue away’ We constantly say this! At least 50 times a day, if not more... People with Down syndrome may have an oversized tongue. Emma does. It’s seriously long! She will easily touch her nose, no worries, when she grows enough to try. We’re hoping that the constant reminders now will help her to remember to keep it in her mouth when she’s older. We’ve already noticed that she usually does it more when she’s tired or sick, so when she’s happy and playing or chatting away it’s safely tucked away.

Up to 50% of babies born with Down syndrome also have heart conditions. When Emma was born we were told she didn’t have any heart issues, but headed off to the cardiologist at 6 months for a checkup anyway. The doctor told us that she still had a hole in her heart, but that it wasn’t huge and was nothing to worry about....Ummm.... we weren’t aware that she had a hole to begin with and I was very unsure about the whole thing!! He went back over all of her notes and scans an d left the room for about 10 minutes to consult with a colleague. It turns out that Emma does have a small hole, one that will likely close on its own, and doesn’t require surgery. Phew! It does mean that she can’t go scuba diving or sky diving because in those two conditions with added pressure the hole may cause a problem. I’m fine with her never doing scary things!! Apparently heaps of people have this issue and it’s very minor so they didn’t want to worry us in those first few weeks. A lot of kids with ...

Teeth! Children with Down syndrome may only have one set of teeth... that means less money from the Tooth Fairy and more work early on to establish good brushing habits!! Once Em has most of her teeth we will head off to the dentist for an X-ray to see what adult teeth she has lurking in the background. They also cross-cut which means they don’t necessarily come in the right order, and they also can be quite delayed. Em got her first bottom teeth on her first birthday, then  cut molars, then her top two front teeth, and the ones next to them are cutting through now. Most of her friends at mothers group have all 20 of their baby teeth... she’s got 9!! Kids with Down syndrome may also have quite brittle teeth - they may look like they’ve been exposed to heaps of sugar, have marks on them, or ‘die’ and go black. This has nothing to do with the foods they’ve eaten or if they were breast or bottle fed... it’s just one of those 120 things that may or may not happen with this fa...

Tired girl. We had our first session of hydrotherapy today. Emma was scared and uncomfortable for most of the session - she’d fallen asleep beforehand and so was woken mid-nap. Not a great start. Secondly, over the chilly winter months we’d stopped taking her to the pool. We’ve been sick, she’s been sick, we stopped making it a priority... fast forward to today and it was like she had no idea that she loves the pool. She was clinging to me and refusing to let go, crying (even  with tears!) and screaming. The Physios were awesome. There were two kids, two mums, and two physios in the session and they encouraged Emma to participate. She reluctantly did some but really didn’t achieve a lot. They praised her when she tried. They cuddled her to make her more comfortable. They let her come back to me when she was really distressed. They helped me to learn what it was we were meant to be doing and why we were doing it so that if we take her on the weekend we can continue the princip...

Emma goes to daycare. Just like any other kid. She LOVES it there. Two days a week we bundle her into the car and drop her off for the day. We get photos during the day on their special app - they do all sorts of fun activities and Em learns so much from the other kids. It was suggested by our Physio a year ago that Emma would benefit from spending a big chunk of time with her typically developing (that’s the pc term for ‘normal’) peers. Having kids around her crawling and w alking and talking and playing will encourage her to do the same... and so far it’s proven to be very true! Recent research into early childhood development suggests that kids with a disability do really well in mainstream education. Typically developing kids in mainstream education with kids with a disability also do really well. Both learn from each other - they learn social skills, they learn compassion and problem solving. They learn to celebrate differences and similarities. This is true inclusion, and...

Snot. It’s a big part of our lives here at Emma HQ. When the nose is full, it starts coming out of her eyes, like conjunctivitis. Ew. Why? People with Down syndrome sometimes have underdeveloped respiratory systems. Long story short, the snot pipe that leads from the nose down the throat is meant to be a nice curve, but in Emma’s case it’s more of a right angle and the space is smaller than usual. This means that the snot doesn’t drain easily. When it can’t go down, it comes  up and into her eyes. She doesn’t have a cold. She doesn’t have conjunctivitis (usually... thanks Daycare!). It doesn’t bother her, and it bothers me less each day. I was always going to be the mother that didn’t have a snotty kid. The day she learns to blow her nose will be the greatest day of my life! Until then, we wait until she grows bigger, and her pipes grow. If, when she’s 3 or 4, it hasn’t sorted itself out, she’ll have some surgery to clear adenoids and maybe get grommets. The issue wit...

‘You’re amazing... I don’t know how you do it... you’re Superwoman!’ These things I hear all the time. You know what? I’m not. I’m just a Mum, trying to do the best for her child. If your child was having trouble with a maths problem, you would help them. If your child needed help to make friends because they were so shy, you would help them. If your child was sick, you would take them to the doctor or the hospital and help them. My child sometimes needs help. So I help her.  I help her because I love her, and I want everyone else to see just how much worth she has. I help her because she will have dreams and aspirations and I don’t want her to think she can’t achieve them. I help her because it’s my instinct, as a Mum, to protect her. I help her because if she doesn’t learn to try, she won’t learn that failing is okay. Failing is okay because you get up and try again. And again. And again. I’m not Supermum. I’m just like you. So is Emma.