admin July 21, 2010

I woke this morning to my son trying to ‘bite mummy’s nose’ with Dad’s glasses case.  I buried my nose in his delicious soft neck – ahh the smell of your own child’s skin! It’s kind of irrelevant to me now that as well as being cheeky and smelling divine, my son has Down syndrome.

Then I read today’s news. Two families from my home town are taking their doctors to court because they had children with Down syndrome – their diagnosis was not picked up during pregnancy.

The Herald Sun says ‘ Victoria, people can sue for compensation for the continuing costs of raising a child to the age of 18, where the child was born as a result of negligent care’.

I am not one to judge.  Human challenges are many.. daily.. for all of us, and we all respond differently. I hear stories every day about how different parents react to a situation like this and I feel for every one of them.  It’s hard!

I had no idea I would react the way I did when my son was born.  I don’t know how I would have reacted had I been told during pregnancy. But for me, research into healing was therapy – for me AND my son. Others find a situation like this utterly anihilating.

I TOTALLY understand!

There is a common thread through the articles I’ve read today – everyone I’ve seen interviewed, every interview I have read, talks about the FACT that Down syndrome equals health issues. The FACT that it is to be avoided – at all costs, better screening is the solution. Avoid it.

On Channel 9’s Today Show, Mia Freedman talked about children with Down syndrome having ‘enormous health problems’.

I can honestly say that our experience of Down syndrome has not fitted this mould in any way.  I know there are plenty of people who will say we got lucky, everything we did is placebo – our successes would have happened anyway.

We have worked our guts out to help our son since he was born! But apparently we got very lucky that he has no heart defect, no thyroid problems, no mobility or vision issues.   We got lucky with his hearing, lucky with his ability to walk, lucky that he has only had to go to emergency once in his life (when he had a nasty cold) and has had no other serious illness.  We got lucky that he has no food intolerances or behaviour problems, lucky that he now speaks, lucky that he cuts with scissors at 3 and could read words at 18 months.

That’s pretty lucky.

And that’s exactly why I wrote my book.  It’s a case study. It’s only one child’s story, I understand this doesn’t constitute a double blind scientific study. But I felt the need to tell others what we did, what supplements and therapies I selected for him and what results we achieved in his first few years.  We observed miracles I had thought impossible. And now I read more and more stories from other parents who are doing some of what we have done and are observing similar improvements.

I guess they got lucky too.

I produced a documentary about our experiences to bring awareness for other parents that Down syndrome is NOT a life sentence. Children with Down syndrome DO respond to natural and alternative therapies very well.

I want others to know what is possible for their kids.  Or for the kids of people they know.  This is a human problem.  Humans should know there is something that can be done to make things better.

My son delights us just as our daughters did at 3 1/2.  He steals my wallet and runs away, wants to cook all the time and counted ‘3 white utes’ on our walk yesterday. We love him to pieces.

Click here to watch the documentary – Part 3 shows my son at 3 1/2.  And no, he doesn’t have mosaic Down syndrome (the mildest form).  Trisomy 21 – the most common kind.

Here’s to healing!

26 thoughts on “Down syndrome – there is hope!”

  1. So well put Kristen. Having read your book and the meticulous records you have kept of Gryffin’s improvements i have not doubt they are more that just luck or placebo.

    Keep up the great work.

    Claire :)
    Organize Your Life

  2. Kristen: really thought your article was well thought out and a different perspective from the “blaming” and litigious society we find ourselves in. It is great to see you and your family taking responsibility and making the absolute best of your situation. Annie

  3. Kristen, it’s great your fantastic book and the story of Gryffin’s unheard of achievements is bringing hope and new options for parents of Down syndrome children. To say you “just got lucky” – is like saying the earth is flat. My hat of to you for making such a huge change to Gryffin’s life and the lives of other children and their parents, what a “Wonder Mum”.

  4. I’m Gryffin’s grandmother and I was delighted today when we played “shops” together. He told me I had to pay “five” for one of his precious toys and held up 5 fingers. He carefully placed the imaginary money in his pocket. I could EAT him! Loving congratulations to you all – we are very proud of you. xx

  5. Kristen – some parents may take just one thing from your book, and this one thing may change their child’s life. A parent of one of my patients with a metabolic congenital condition told me last week that after reading your book, her life has changed, and so too is her daughter making amazing progess – after taking some pointers from your book. I felt wonderful because I recommended her to read the book, I can only imagine how you would feel when you hear things like that – you WROTE the book! Well done, Keep up the everso amazing work and dedication and well done to Gryffin! Nahla

  6. What a fantastic approach – to children, to health and to life. How much happier and healthier to take this approach than thinking about who to sue. Congratulations on everything you have done with your family and Gryffin.

  7. Hi Kristen,

    I wanted to thank you for giving me the opportunity to share your life. It’s been a real pleasure and an honour. I finished your book yesterday, it was a great read and here is the link for my review.

    I wish you and your family the best of ‘luck’ for the future.

  8. Keep dodging those “sharks in the water” Kristen and NEVER let your tireless work with G be minimized! Lisa

  9. I love the way you are completely authentic and speak from your heart. Congratulations on a wonderful book and, more importantly, life changing work on so many levels and for so many people!

  10. Kristen, I can feel your passion for giving every child the best opportunity for a full happy life, starting with your own children! Like you, I do worry about the message these types of court actions send to parents and their children who are affected by Down Syndrome.Keep up your advocacy – great work!

  11. Hi Kristen, Missed you at the Blueprint conference. It shows astoundingly how much passion and unconditional love you feel for children. You prove that every human born into this world has a chance to live the best life they can. The parents need to source out everything possible to enhance the well being of the child. You give hope and inspiration to our human society, lots of love Leonie

  12. Dear Kristin,
    I haven’t read your book but I wanted to add my delight in my little boy Jaden who also has Down Syndrome. He is healthy and happy and reaching those milestones within the normal range like every other child. He has also had good health which we think is due to God’s work in his life. There is nothing better than hearing giggling and seeing your two children hugging each other. We are sad that we will lose so much time with him when he starts preschool at our local school.

  13. Hi Kristen, this is a really great story. Thanks for sharing it with me. I am passing it on….

  14. Wow – you’re touching lives Kristin! Love the documentary & insights into the book. Very authentic & engaging.

    Blueprint was amazing – but no more amazing than kicking goals and following your dreams.

    Thanks for keeping me in the loop

    Jason Jay

  15. Hey Kristen I read the herald sun article and thought of you, how you guys are an example of how a society should think trying for the good of one and all. Love your work

  16. I’m so proud to know your family and a strong woman like you Kristen! I’m also so glad to be a small part in Griffyn’s life…reading your book was such an inspiration for me and a huge example to follow for my life! Thank you!!!

  17. Yours was a typical Australian grossly understated response Kristen. The truth is that in a field of tall poppies your work has elevated you to the height of a pine tree. Thank you for the great parenting example you are setting.

  18. Hi Kristen.

    The ideas you have in your book not only apply to Downs Syndrome.

    My daughter has ASD. Since taking the supplements her behaviours and speech have improved so much that it has been noticed by the Kindy and Speech pathologist. It’s wonderful to see her progessing and interacting more.

    I appreciate that you documented your journey and have chosen to share it with us. It’s so helpful for others who are on a similar path.

    CL x

  19. Dear Kristin, thank you so much for this article. I have not read your book, but what I find most refreshing in your perspective is your non-judgmental attitude.

    There is so much focus on blame in both sides of these cases. I commend you for focusing on YOUR story, and letting YOUR story bring your point home, and not judging those parents who are suing—we don’t know their thoughts and feelings.

    Thank you so much for this refreshing insight.

  20. Keep up the good work Kristen. As parents we know it is not luck but hard and rewarding work. I feel sorry for parents who feel the need to be litigious instead of focusing on the pleasure they will get from encouraging their child’s development. My daughter, now 29 lives independently and has taken us on a journey we would never have envisaged. She has enriched and challenged all our lives.

  21. A beautiful testament of love, family love. Love knows no boundaries nor ills when it’s real.A moving heartfelt story. Success anywhere is all about attitude, keep up the fantastic work. Your son is gorgeous! what a sweetheart!
    Though long since forgotten, we faced the same situation 15 years ago when told our child would be born with Down’s syndrome. Almost forced to terminate the pregnancy, I stood firm. Researched as much as possible to as to what to expect with life with such a child. A neighbour has a son with Downs syndrome who is so endearing, well loved, I knew life would be challenging, but my futures sons life would also be fufilling & rewarding. It was such a shock when he was born he didn’t have Downs Syndrome.
    My husband has burns to 60% of his body, I don’t see his scars, I just see him.

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