A User Manual For My Daughter

Meet Karola

Karola & Emily FY Karola Gaede Franklyn was born in Germany and now lives with her kiwi husband,    three daughters, two dogs and some chickens in New Zealand.  Karola works as a secondary school teacher and is head of Down Syndrome Otago, linked with The New Zealand Down Syndrome Association, which states its aims as being, “to inform and support families/whanau whose lives have been changed by Down syndrome; to promote and advocate for positive attitudes; to promote the rights and inclusion of people with Down syndrome; and to review policies and lobby government, and other agencies”.

A User Manual for My Daughter Since my friends from this wonderful website asked me to write a blog for their site, I’ve been thinking a lot about what I could write about my daughter. So, first of all: Why was I asked to write about my daughter and my life with her? I have three daughters after all. Two are considered “normal”. They are not. They are very unique and special. My third daughter is unique and special, too, but many people don’t see that. They call her disabled or special needs. My middle daughter has an extra chromosome, she has Trisomie 21, better known as Down Syndrome.

I could fill pages about how wonderful my daughter is, how she makes me laugh or smile every single day. Would you understand it? I could tell you that I have never had a problem accepting her for who she is. Would you believe me? Other people have written beautifully about the topic, better than I ever could. People have written about their feelings when they were told that their baby has Down Syndrome. People have written about how their feelings changed and how they came to love their child with Down Syndrome. People have written about how full of love and life people with Down Syndrome are.

It is wonderful that thanks to social media more and more people are finding their voices and are spreading good, useful information about Down Syndrome (beyond the dry medical facts). Why are they doing this? There are really two reasons: For one, they are – we are – trying to convince expecting mothers that there is really no good reason to abort a child with Down Syndrome. I won’t go into this debate. All I’ll say is that children change your life. All children have their challenges. All children bring you joy. The other reason for writing about our children with Down Syndrome is that we want them to be accepted, not just tolerated, but truly included. This is what all parents want for their children. This is what is not happening for our children. Is it so hard, so difficult, so scary? It actually seems to me that it’s not my daughter who has the disability …

Anyway, I thought, maybe the world needs help with this and I decided write an easy-to-read, easy-to-understand user manual for my daughter with Down Syndrome. This is what she would tell you in the manual:

1. Listen to me when I am trying to tell you something. Listen when I say ‘no’ or ‘stop’. I know that sometimes I am a bit difficult to understand. That’s part of having Down Syndrome. I could give you a lengthy explanation why this is so or you could just accept that this is the way I am and make an effort to understand me. Trust me I am making an effort to make myself understood and to understand you!

2. Answer me, talk to me. Don’t just ignore what I am saying. Do you have any idea how frustrating it is that I am trying to talk to people and they will just not answer?

3. Give me time to understand what you want me to do. What’s with all the rush all the time? Explain or show me if I really don’t understand what you mean. Take me by the hand and point if that’s what it takes.

4. Play with me. If you have understood step 1 to 3, that’s not all that hard. I like to play lots of things. If you ask me to join in I will give it a go or you could let me suggest something that we could play together.

5. Let me try to do things by myself. I will ask for help when I need it. I am very happy to celebrate your successes with you. Give me a chance to celebrate mine. I will get there. Don’t underestimate me!

6. Let me make my own choices. I know what (or who) I like. I have the right not to like certain things or people.

7. Teach me – when it’s necessary. I know that there are rules. The same rules should apply to everyone. Set a good example. Tell me what to do (not what not to do). Explain or show me how to do it right. Don’t yell at me, if I do something that you don’t like. That frightens me and confuses me and it makes me angry, too.

8. Give me a break. So many people are trying to teach me things. I am working incredibly hard all the time to keep up with everything and everybody. It is really quite exhausting. So, if I do something silly, if I make a mistake, could you just look away – occasionally? You’re not always perfect either.

9. Laugh with me – not at me. I have a great sense of humour (I know not everybody appreciates it all the time, but I am really quite funny) and I love to laugh with you. I love to see you happy. It makes me happy, too.

10. Ask if you want to know about Down Syndrome. Ask if you want to know more about me. Ask my mum or my dad about the things that I can or can’t do. Asking them questions about me doesn’t hurt them. Not including me hurts them. It hurts me, too.

I think that’s pretty much it. I know you think letting me into your life is an effort and maybe it is. But it is worth it. Just give it a go. You will be surprised what cool things you will discover.

Many thanks to our friend Karola for this article, from Kirsteen & Sarah.  🙂

Some links to follow related to this article:

For Down Syndrome Otago  Google this name.

www.nzdsa.org.nz/contacts.htm www.savingdowns.com/



2 thoughts on “A User Manual For My Daughter

  1. I don’t have a child with down syndrome.. or any children at all actually but I really like this article you’ve written. I think its really meaningful.

    Its apparent that you’ve been able to kinda slow down in your life.. for the benefit of your daughter to make sure she feels successful and included and everything else that you do for her.

    Do you think that its transitioned to the rest of your life? Has it made you a more compassionate, empathetic person overall even when your daughter is not there?

    • Thanks for stopping by, Chris. As Karola’s friend, I can say this has transitioned into her life in general. She’s a wonderful Mum to all her kids and a great advocate for children with Down Syndrome.

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