Down Syndrome The Perception vs The Reality: An Honest Account By Parents

Down Syndrome The Perception vs The Reality: An Honest Account By Parents


Hello,

I’m not sure how you would’ve landed here – either you’re someone that follows our blog already and are embarking on this journey alongside us as you always have, thank you.

Or perhaps you’re a parent that has just received the news that your bundle of joy may have Down Syndrome and you are frantically scouring the internet desperate for information, desperate for reassurance, desperate for that light at the end of the tunnel, desperate to know that your life is not over, that this isn’t the end of your world. Like me on those initial few days, perhaps you are desperate to know what life may be like, to know that it’s going to be ok.

Welcome.

We are now 6 months in to our journey with Saajan and although life is a little slow paced (they call it the scenic route for a reason!), he’s a pretty typical child for now!

I have my days where I still worry, where it feels like there’s a black cloud over my head – all I have to do is look at my son to get an instant smile and most of those worries melt away. My actual fear is society’s ignorance – my only control is to try and educate. But let’s be real – society has moved forward, and there is so much more support available to people like us in this day and age. We are very fortunate. As time passes, I see more and more success stories of adolescents with Down Syndrome thrashing all limitations – starting up businesses, speaking in front of MPs, even driving! Sky’s the limit – it’s important to focus on abilities, we’re all different after all, with or without a label!

If you’ve received a recent diagnosis, I hope you can take comfort in some of the people that have held my hand, and have been able to provide me with reassurance through their children, experience and life. There is nothing quite like first hand experience. Not from professionals, not from doctors, nor from a counsellor, no, from real life parents of those rocking an extra chromosome.

Thank you to every single mama, papa and babe that participated in the below – you have no idea how much strength you and your children have given me. Thank goodness for the power of social media and the amazing and supportive community of Down Syndrome and special needs parents. I am truly starting to understand the meaning of #TheLuckyFew! I’ve spoken to parents of children with Down Syndrome of varying ages – this has been so helpful to see what life may be like. And do you know what? Our life is not over, it’s just beginning!

And for those of you that may be joining “The Lucky Few”, welcome! It’s going to be ok – we will be ok. Don’t take my word for it, take theirs! x

NISHA & KUSH

I remember hearing about Nisha and Kush years before we were ever to cross paths – I’d heard about her through a friend. Nisha has been my constant strength and inspiration through the day we started this journey. Nisha and Hamel have invested so much in Kush and his capabilities never fail to amaze me! Kiera is the sweetest most patient little sister I’ve seen (p.s. Kiera is younger than Kush – there are so many mama’s that go on to have more children after a Down Syndrome baby incase that’s a worry for you as it was for me!). They’re a pretty regular family that travel, enjoy family meals out and have the usual toddler bickering! Don’t you think Kush looks just like his mummy and they both have the most beautiful smile!? Nisha created a video in aid of Down Syndrome awareness which provided me with so much comfort:

Here’s Nisha’s reflection on “Down Syndrome: The Perception vs The Reality”:

Kush, age 4, post natal diagnosis a few hours after he was born.

Life couldn’t be more different from what I thought it was going to be like when we received the news to what we are living now. Kush is our heart and soul, our pride and joy, he’s changed us all for the better and brought our family so much closer together. I love him so much it hurts and it makes me sick to think I would have contemplated termination had we received a pre natal diagnosis – only because of pure ignorance to the condition and what it really means. It can take Kush longer to do things than other children. That’s it!! He can still do everything and proves everyone wrong everyday. Don’t get me wrong, it can be challenging at times, our path is different and I still have the occasional down day – but which parent doesn’t? As far as I’m concerned our family are living a “normal” life which I didn’t think I would be able to do when they told us Kush has Down syndrome. I would urge anyone that may have had a recent diagnosis not to think too much about every tiny little thing, don’t google things, don’t listen to medical professionals who will always give you extreme information, speak to parents of children with Down syndrome, as many as you can, there is lots of help and support out there!

You can follow our journey on Instagram.

 

SARAH & OSCAR

I love this woman so much. I remember speaking to Sarah on the phone and her saying “Harps we only live once, we may as well f*king enjoy it!” It’s true. Every day we have the choice to be happy or sad. Sarah has contributed massively in raising awareness amongst health professionals through her blog “Don’t Be Sorry” and has recently been all over the news in encouraging the use of appropriate language when delivering a diagnosis – the word “chance” vs the word “risk” which implies danger and frightens people. There isn’t anything “dangerous” about Saajan or any other child with Down Syndrome!

I’ve taken so much comfort in watching Oscar playing builder with his siblings – something we thought Saajan will never do. They’re a pretty regular family too. More than anything, I have no idea how Sarah manages three babes under 5! Super mum or what?!

Sarah was one of the main pillars of support I had before and during Saajan’s surgery as she knew the journey all too well as Oscar also had to have open heart surgery.

Here’s Sarah’s reflection on “Down Syndrome: The Perception vs The Reality”:

Oscar (Age 5), Postnatal Diagnosis – we had screening and were considered low “risk”

When I first had Oscar I’m ashamed to say, I had a preconceived idea of what a family who a had child with Down Syndrome in it, looked like. I thought they’d always be sad. I thought they’d never laugh again and I thought the future looked pretty bleak for them if I’m totally honest. I’m ashamed to say this because before I had Oscar I spent an hour a week, teaching dance and drama to a bunch of kids with Down Syndrome. And all the while I would come out of that class, my heart bursting with love, admiration and pride for how brilliant these kids were, when I fell pregnant with Oscar, my first child, I had wanted everything to be perfect. If I’m brutally honest, I didn’t want a child like that. I didn’t want Down Syndrome.

Hearing myself say all this out loud now makes me feel very uncomfortable. Because although I knew these particular kids were amazing and I’d seen first hand that their families weren’t sad, went on holiday (Yep that was one of my other warped impressions… that families who had a child with Down Syndrome in it, didn’t go on holiday) and were leading full and happy lives, my main issue, is that I didn’t want “different”. I didn’t want our life to be anything other than normal I guess.

When I finally got over myself, and for the record here, I apprecaite to a lot of people, I’m going to have sounded like a self absorbed idiot for feeling all of the above, I realised that life with Oscar in it, wasn’t all that different anyway.

A few months ago my best friends mum passed away from Alzhiemers. She was young and it wasn’t fair. Just last month my friend found out her husband had been cheating on her and as i write this, another friend is battling cancer. While I’m not likening Down Syndrome to the awful events I’ve listed here, I am popping them all in the same category of …“When life doesn’t go the way you plan it too”. Becasue lets face it, if there’s one thing I’ve learnt in my 39 years of being on this planet, it’s that sometimes we find ourselves on a completely different path to the one we expected.

But what’s my reality now… 5 years on? What’s it actually like living with Oscar and with Down Syndrome? The truth is, it’s a million miles away from what I expected. It’s nowhere close to what I first imagined. There’s no sadness (apart from when he wakes me up at ridiculous o’clock in the morning of course). There’s holidays, there’s laughter and the future? Well bleak doesn’t even feature anymore. Oscar has brought us more joy than we thought possible. He is a loved and valued member of our family and we wouldn’t change a single part of him, for if we did, he wouldn’t be the little man that he is today. Of course Down Syndrome comes with it’s challenges, I’m not saying that life is smooth sailing all the time. But I genuinely believe our lives with Oscar in it, is better for it.

I hope it’s ok to admit all the things I felt in the beginning. It was a process that I had to work through and I’m sure I’m not the only person out there who has strived for perfect. For everything to be normal

If only I’d have realised that to me Oscar IS perfect. And that going to the grave saying I lead a “normal” life is actually the last thing I’d want now. Different really is ok. In fact it turns out, it’s pretty wonderful.

You can follow us on Facebook, Instagram and Twitter.

 

KALEY & BRODY

Brody is the closest in age to Saajan out of all the families we’ve encountered with a Down Syndrome baby so far. My heart bursts with joy when I see his tiny face pop up – I think it’s because he reminds me so much of Saajan. Kaley has been so supportive through our journey with open heart surgery as they also embarked on the same journey a few weeks before us. Her support has been invaluable and I’m so grateful! It helps so much to talk to someone that “gets it”.

Here’s Kaley’s reflection on “Down Syndrome: The Perception vs The Reality”:

Brody, 6 months, pre-natal diagnosis

I thought life with a child with Down Syndrome was going to be very scary and sad. Given, I was pregnant and hormonal at the time and Google was not my friend. There was a lot of out dated information that scared me to tears many times. I thought I would be spending my life running from one doctor’s appointment to another, adding in therapies when I could, constantly worrying about his health and his future. I thought a lot about Brody’s future. If he would drive, go to prom, go to college, have a job, get married. I worried a lot about him having a “Typical life”. Now that Brody is here, I know that he was not destined to have a “Typical life”. He is meant to touch people’s lives with his infectious smile, joyful spirit, and undying determination. We are only 6 months in on this journey, and we are already so excited to see where Brody goes in life and see how he uses his life and maybe even a few of his challenges, to touch others’ lives. And while there are still challenges, we wouldn’t trade Brody or his extra chromosome for anything in the world.

You can follow our journey on Instagram.

 

ANA, ANGELICA & MYAH

Myah is absolutely adorable and is definitely changing the face of beauty by repping for some awesome Insta-shops. Her two lovely mummies do a wonderful job with raising awareness. Myah sure knows how to work the camera! I love watching her on Instagram and see her personality shine bright!

Here’s Ana and Angelica’s reflection on “Down Syndrome: The Perception vs The Reality”:

Myah Flores 14 months, prenatal diagnosis

Top from Instashop @alilsomethingextra

Well we honestly thought it was going to be a lot harder than it actually is. We thought we would spend a lot of time in the hospital. We thought Myah would have trouble learning everything, that we would be dependent on taking her to therapies so that she could learn. Life if the total opposite. Myah was lucky to be born with no health issues. She learns on her own and does everything a “typical” child does. Her development is a little behind but thats ok because she is taking her time. Myah is all smiles from when she wakes up to when she goes to sleep at night. Don’t get me wrong she does have her moments just like any other child but she gives us all the love and kisses that you would ever want. She has shown us that just because you don’t know what a diagnosis is don’t is don’t be afraid to give your child the chance to show you that just because they have a “disability” does not mean the are not able to do anything they put there mind to. Every child is different but this is our how our life is with a child with Down syndrome. We would not change Myah or her diagnosis, she is perfect just the way she is.

You can follow Myah’s journey on Instagram.

 

DAWN & CEDAR

Dawn is a mother of 6, an author, a blogger, a gardener of plants and children, and a Down Syndrome advocate. Dawn is doing an absolutely amazing job in raising awareness and often explores different avenues such as Down Syndrome adoption and various health scenarios. Dawn also shares tips on therapies which I’ve found really helpful amongst the community. I love reading the stories that she shares on her blog from fellow Down Syndrome mamas. I also love watching Cedar grow – his signature is definitely his beautiful head of hair! I love watching his siblings dote on him – it reminds me so much of how Arjun is with Saajan.

Here’s Dawn’s reflection on “Down Syndrome: The Perception vs The Reality”:

Cedar, 7 months old, post natal diagnosis.

My son, Cedar, is now 7 months old, he was born December 2016. We had a birth diagnosis and absolutely no idea that he was to have Down Syndrome prior to that. Even his current heart conditions were not noted, despite a level II ultrasound during my pregnancy. We had a planned homebirth as we had no idea that there would be any issues other than a perfectly healthy baby boy.

I always deny testing during my pregnancies because to us, it doesn’t matter what God gives us. Of course, we always assume that we will be given a typical, healthy child, doesn’t everyone? However, with that being said, it was a shock and we were completely blindsided at birth. My husband and I knew something was different about this baby, our 6th child. My husband, I think, recognized that it was Down Syndrome before I did, I just knew something was very different in his appearance and I think I was in denial that Down Syndrome was what my son had.
To answer the question “What life with a child who has Down Syndrome is like compared to what I thought it would be like….” I have to say, I was ignorant and I feared the life we were about to embark on.

I was so very sad when we learned of Cedar’s diagnosis as confirmed by a pediatrician and subsequent genetic testing. I feared the unknown and I cried so many tears. I thought life would be so sad and isolated. I feared that we would no longer be able to do the things we loved to do, go on vacations, hike, and just enjoy life with our brood (we have 6 children, after all). It was the fear of the unknown that was almost crippling at first.

But then….then… I began to dive into the learning phase. I scoured the internet, I learned everything I could. I began looking at my child and realizing that what I thought this life was going to be like, was so very misguided.

Life now is beautiful. My son lights up my world daily with his plentiful and ready smiles. He is the easiest, most laid back baby I have ever had the pleasure of parenting (and remember I have 6). Life is in no way sad, isolating, or to be feared. We do all the same things we did before; we go camping, hiking, swimming, everything we have always enjoyed. The beautiful family I have gained that have children with T21 has also been amazing. When we go out in public we are accosted by people who want to touch his beautiful hair or comment on his big brown eyes. I am actually enjoying the slower pace that is life with Down Syndrome. My son takes his own time, and that is okay, I am enjoying every baby phase knowing he is my last, it’s nice that the stages last a little longer.

You can follow us on my blog Cedar’s Story, Facebook and Instagram.

RUPI & ARJEN

Rupi is a follower of the blog and reached out to me just to let me know everything is going to be ok although in the early dark days it doesn’t always feel like it. I’ve been so grateful to the mummies and daddies that have reached out to us to give us hope. 9 years on and Arjen is doing so well! 

Here’s Rupi’s reflection on “Down Syndrome: The Perception vs The Reality”:

Arjen, 9 years, diagnosed post natal at 3 days old.

When Arjen was initially diagnosed, I could only think of the worst case scenario. I had very limited knowledge of the condition, as did my family and friends. Life is good, not at all how I imagined. Arjen coming into our world has made our family closer and stronger. Arjen loves to swim, play football, Mario cart (all the things little boys like to do), also loves to eat out. He makes us so proud, he is a much loved son, brother, grandson.

KAREN & CALEB

I was relieved to stumble upon Karen’s page – why? Because it gave me insight in to what life may be like as Saajan gets older and boy do I take comfort in Caleb! If I’m having a down day, I turn to Instagram and I’m instantly comforted by Karen’s page and all the amazing things they have achieved with Caleb. They are such fabulous and dedicated parents and the benefits of their efforts definitely show! Caleb is such a well rounded individual and it provides me with so much hope for our future!

Here’s Karen’s reflection on “Down Syndrome: The Perception vs The Reality”:

Caleb Prewitt, age 10, post natal diagnosis

When Caleb was born, we were surprised by his Down syndrome diagnosis. Monthly sonograms showed no sign of him having Down syndrome, nor revealed his heart issues. Stunned, I made up my mind to get my hands on any information, group or resource out there for parents. We soon became actively involved not only in our local Down Syndrome group, but other local groups for all disabilities. Meeting so many people at first was a bit overwhelming, but we came to appreciate the wealth of knowledge they offered about life with someone with Down Syndrome. Of course, it was all new for us, and took a bit to settle into routines and therapies.

Honestly, i don’t think we really knew what to expect 10 years ago. Mindsets were already beginning to change in the Down Syndrome community about what our kids could be capable of. We worked hard, and kept our expectations high. We never encountered people who told us “can’t” or “won’t” – I think that helped set our path to one that encourages Caleb to do his best. We had supportive family, friends and support people (therapists, teachers, advocates, etc.). Issues were faced with a positive viewpoint and helpful suggestions. I totally believe that helped keep us reaching high.

Today, life is good! Caleb is an active, engaged young boy. He has friends and leads a full life. He has learned, and continues to learn, independent skills that will be helpful as he grows older, and we decide as a family, about life after school. Do we have it all together? Heck no. But we still continue to work on things with that same positive attitude. Our hope is that society allows him a chance to be a productive member in a job or career that he loves (really no different than anyone else), that he has good friends, and remains active in his community. At age 10, we are halfway through school, and have our sights set on poss-ABILITIES.

You can follow us on Instagram and Twitter.

HAYLEY & NATTY

As many of you may have, if you watched the programme by Sally Phillips “A World Without Down Syndrome?”, you may recognise Hayley and Natty. It was in our early dark days Hayley reached out to me – more than anything I found her words that she spoke with Natty present on the documentary so moving. She’s a Down Syndrome advocate who has thrashed may misconceptions – I love watching Natty on Facebook live, she has such a huge personality and with the guidance and love of her parents and support network, she’s doing so well! Natty is also a model changing the face of beauty.

Here’s Hayley’s reflection on “Down Syndrome: The Perception vs The Reality”:

Natty, short for Natalia Hope is 10 years old. Down’s syndrome was identified around 5 hours after she was born, along with a heart condition. We had refused invasive antenatal screening as I had had 5 miscarriages previously.

Life with Natty bears absolutely no resemblance to the outdated stereotypes that tumbled through my head when she was born. She is beautiful (she’s also a model), bright, feisty and funny and has been our greatest teacher, showing us how to live in the moment and enjoy the finer details of life. She has opened up a whole new wonderful world and introduced us to the most amazing people. I would not change one single thing about Natty, even if I could.

I would not change one single thing about Natty, even if I could!

You can follow us on our blog Downs Side Up and on Instagram and Facebook.

RACHEL & KENDELL

Kendell is so bloomin cute it’s unreal! I love watching this family do regular things such as hanging out at the beach, going to church and just being a family. I sometimes forget that Kendell has Down Syndrome as they’re just living life like a regular family!
Here’s Rachel’s reflection on “Down Syndrome: The Perception vs The Reality”:

Kendall, age 2, prenatal diagnosis

On December 9, 2014 I found out that my second child would be born with Trisomy 21. I have often wished I could go back to that one moment in time, as tears streamed down my face, and tell myself that my life was about to change in more amazing ways than I could ever imagine. I would reassure myself that I would learn to love with unconditional fortitude. I would experience pure joy and happiness from this child. His big brother would be his fiercest protector. My circle of lifelong friends would exponentially expand so quickly that I would never be alone in this journey. I would tell myself, “This is the best thing that will ever happen to you.”

You can follow us on Instagram.

SARBJIT & GIAN

I found it really comforting to speak to Sarbjit being from the same community.  I often wondered if Saajan would be ok at the Gurdwara – would he be that child that everyone stares at? Sarbjit’s words and experience with Gian has really helped me to put those worries at the back of my head! Gian loves to go to the Gurdwara and if he doesn’t go for a while, many people ask where he is as his presence is missed. Sarbjit works so hard to raise awareness for Down Syndrome and autism. 

Here’s Sarbjit’s reflection on “Down Syndrome: The Perception vs The Reality”:

Gian Singh, age 6, post natal diagnosis

Moments after I realised Gian may have down syndrome I looked at this bundle of joy and knew with the strength and love we have as a family Gian will have the best life possible.

When I came home with Gian from hospital I had a moment to myself in my bedroom. The rush of emotions of grief, lost dreams and the why me questions hit me as I looked at his cot all ready for him to be laid in. I needed to release this emotion to fully provide my Gian with endless love and support. I had a small period of depression. I was fighting with my initial feelings of Gian’s future and worries about his health. I wiped away those tears and kept being the best mum for my children.

My husband and I didn’t see Gian as special but nurtured him the same as we did to our eldest two children. Yes Gian had challenges but so do all children. Gian was recently diagnosed with Autism but these labels don’t define Gian just helps us to understand how to support Gian.

Gian has the most amazing laugh and a beautiful personality that fills our family and friends lives with so much enjoyment.

You can follow us on Instagram and Twitter. We are also part of the Leeds Down Syndrome Network known as Sunshine and Smiles.

KATIE & SUTTON
Katie reached out to me to share her story after we’d originally published this blog post. I’m so glad that the message is being sent near and far that Down syndrome is nothing to be fearful of! 

Here’s Kate’s reflection on “Down Syndrome: The Perception vs The Reality”:

Sutton, prenatal diagnosis 

I just wanted to share with you our prenatal story of our sweet boy, Sutton (which I have attached below). We were absolutely terrified at first being so young. I was 24 years old and my husband 25 years old. I hope that perhaps our story can help younger parents like ourselves realize that having a child with a diagnosis of Down syndrome is not scary. I wish I could take back the days I spent upset, but I do believe I needed that time as well to accept it. I want to be the story that another young mom can read to let her know that her future is so bright and the love that she will feel for her sweet child is unimaginable! I hope to be the story that I could have read instead of all of the negative articles that are on the internet that tell you what your child will not be and can never do. There truly is nothing down about it and we are the lucky few! 💙💛 

You can follow us on Instagram!
TAMARA & GREYSON
Given Greyson wasn’t born so long after Saajan, Tamara is someone I’ve been able to share some of my deepest and darkest thoughts with and vice versa. Where the others have been my light at the end of the tunnel, Tamara and I are very much at the beginning of our journey. Where some days are great, other days are still a period of acceptance. I’m grateful to have met Tamara as having someone that is experiencing some of the same emotions as you at the same time is really comforting and eases the guilt as you realise it’s completely normal to feel wobbly some days as is often the case when something unexpected happens. 
Here’s Tamara’s reflection on “Down Syndrome: The Perception vs The Reality”:
Greyson, 3 months old, positive NIPT but didn’t get confirmation until after birth. 
My original fears were for Greyson’s health. My next was what our future would look like. However, I’ve learned that even if we had a typical child, we don’t know what the future holds. Having Greyson has changed the way we think and the way we see the world. We learned that having Greyson has far exceeded our expectations and we know he will continue to exceed our expectations in the future!
You can find us on Instagram and YouTube and on our blog AlongCameGrey.com
Thanks again to all the families that participated in putting this blog post together.  Much love.

 If you’d like to share your story with others and be included in this post in hope of making a difference, please email me at Harps@BabyBrainMemoirs.com. 

Do you know anyone with Down Syndrome? Have they thrashed any perceptions you may have had?x


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  1. 1
    Dawn

    You did a fantastic job with this post, I loved seeing a few of our
    Instagram friends and learning of some others. Thank you for sharing at the T21 Bloghop!

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