Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Growing up   /  Emily


In some circles, the 12th of August is known as The Glorious Twelfth. I can’t argue with that – it was the day that Emily was born back in 1992. Emily – beautiful, intelligent, crazy, gutsy, adventurous Emily. Words can’t define her. To understand Emily you have to be in her presence, you have to dance with her, sing with her, laugh and cry with her. That might just give you a glimpse of her character; of who she is. For who she is, is far more important than any medical descriptions that try to label and define her as simply having Down’s syndrome. Every day with Emily is an opportunity to learn something about how to live and what it means to be human.


So what have I learned over the past 25 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Firstly, and most importantly, the birth of a baby, a new life, is a reason to celebrate! If you’ve just had a baby, congratulations! If your baby has Down’s syndrome you will probably experience a myriad of emotions, hopes and fears, joy and despair, elation and dejection. This is perfectly normal. However, the main thing is to love your baby with all your heart, soul, mind and strength. Love your baby today and each and every day. Consider today, without letting the cares of tomorrow rob you of this moment as a dusty curtain drawn across a sunlit room.

When any baby is born none of us has any idea about what the future may hold. Will she be an artist? Will he be good at sport like his Dad? Will she be a daydreamer? Who will she marry? Will he understand his place in the world? Will he want to travel the world and see all that I have not been able to see?

The answer is, we don’t know. So it’s important to let them just be who they are one day at a time.

Of course, when your baby has Down’s syndrome your thoughts of tomorrow may be a little different. For us we wanted to know whether Emily would live? Would she read? Would she write? As Christians we were concerned whether she would understand about God and faith. Will she be poorly? Will she be bullied? Will she have friends? How will this affect her sister? Who will look after her when we’ve gone? Could she live on her own?

Right from day one, dark thoughts flood our very being like a river cascading down a waterfall.

Of course, we had no way of knowing what the answers to those questions would be or what was ahead of us. However, 25 years later I can tell you this (consider me a voice from the future if your child is young) I would not trade this glorious adventure for another. Emily having Down’s syndrome has opened up our world to things we would never have dreamed possible. We’ve had opportunities to do amazing things, we’ve become friends with people we would never have otherwise met; loyal, supportive, lovely friends. We are a genuine community which exists to support, to love and to care for one another.

Emily loves life! She does! She has learned to grasp opportunities that come her way. Her world is so much bigger than many people with no disability who choose to live a small, secure, safe, dull life. You know, the people who consider an adventure to be switching the central heating off in March instead of April!

Emily reads all the time. She loves reading. She can write. She loves to sing and dance and act. She loves to do musical theatre, not in a special needs group (not that there’s anything wrong with that) but in a mainstream theatre company where she can hold her own with the others. She’s got a part time job working in a hair salon. She has a strong faith, she absolutely loves church and understands who God is. She has friends. She’s had a boyfriend but for now is happy to be single! She has hopes and dreams. Just like you.

She knows that she has Down’s syndrome. And whilst Emily understands what this is and what causes it, she chooses to not let it define her. She knows that she needs additional support but she does not allow that to prevent her from doing the things she wants to do.

Babies grow to be children and children to be adults. No two people are the same whether they have Down’s syndrome or not. So I can’t tell you everything will be ok. There are times of struggle and challenge for us all. Tears of hurt, disappointment, tiredness, fatigue, joy, pain, anguish, hope. Tears of pride when you see your baby, your child, however old they are, achieve something for the first time. This is the same for all our children, whether they have Down’s syndrome or not.

Emily has a riotous sense of humour. She can be silly but so can I. Mostly though she is sensitive, caring, compassionate, aware, discerning and working hard to live life to the max. She is my inspiration to be a better version of who I am. Rather than the world dragging Emily down, she is raising others up. Society would have us believe that people like Emily are weak. If that is true, I don’t want to be strong for there is a beauty made perfect in weakness. There is acceptance, there is tolerance, there is joy, there is hope, there is peace, there is grace, there is love.

The years have flown in the blink of an eye. Remember to take time to enjoy your children, your family, your friends. Stop. Breathe. Relax. Smile. Laugh. And remember on the bad days it’s ok to cry for tears have a healing quality. But don’t live there. Seek support. Seek those who lift you and they will often not be your family, who may not understand. Surround yourselves with people who “get” you, who love you unconditionally, just as I know Emily loves me.

The Glorious Twelfth led to a Glorious Adventure. Here’s to a Glorious Future!

http://orangejuiceflavoursky.blogspot.co.uk/ and Facebook https://www.facebook.com/orangejuiceflavoursky/