Sunday, March 14, 2010

A Breath of Fresh Air

Yesterday I attended the SMBC Women's Conference.  It is always a great conference - but today it had one thing that made it even better than the previous times I have attended.

Today, a mum named Madeleine was interviewed.  Madeleine is the mother of a child with special needs, and she got up in front of everyone and told it like it really is.  It was such a breath of fresh air.  She was so open and honest about the ups and downs of a life with a special needs child.  She started by saying that it was likely there was only one other mother of a child with special needs in the audience - if any.  Big fat tears slid down my cheeks the whole time she was talking - betraying my identity as that one other parent.  It was fantastic to hear someone who lives in my world, who understands what my life is like, talking about issues that are so relevant to me - and making sure that others who don't live in this world actually get to hear what it is really like.

Unfortunately like everywhere else, disability and inclusion are often overlooked in the church.  Madeleine was talking about the importance of including people with disabilities in church (AMEN).  About the importance of not trotting out platitudes like "God will only give you what you can handle" or "God only gives special children to special parents" (AMEN).  I think her actual words on that one were that she wanted to slap people when they say that - (AMEN sister).  She talked about the stress carers are under (exact words: 'carers are desperate') and that you can't just say "I'll pray for you" and then think you've done your bit 'supporting' someone in your church who is caring for a child with special needs.

It was great.  She got up there and said all the things I have been unable to say.  I really wish that more of my friends had been there to hear her speak, to get more of an idea of what it is really like to care for a child with special needs.

As soon as the session was over I made a beeline straight for Madeleine and introduced myself.  It is always great to meet other mums of children with special needs - there is always an instant connection - even if our life circumstances are completely different.

Madeleine has written a book about her and her daughter Ella's experiences.  Here are the details for anyone who is interested:

the real story of an ordinary mother's journey with her extraordinary daughter

Madeleine Witham
Published by Ark House Press
ISBN: 978-1-921589-26-5

PS Madeleine is a Christian, so you should probably be aware that God WILL get a mention in the book.


Sarah said...

I sit here now of course agreeing with those comments Madeleine made too, they are the main ones that always get me quite angry.

How wonderful you were able to hear from this lady and have a chat too.

If only they made it a requirement for others to walk a day in the shoes of a parent of a child with special needs, we may have some more understanding and compassionate people in the world.

n0thingbuteverything said...

Yay for you. I am glad you had such a good experience at the conference AND It sounds like Madeleine was JUST the right person for you to meet at JUST a right time. I love the comment about 'I'll pray for you' not being enough. A very frank admission. I hope that she went down well with the rest of the audience? XO

Lacey said...

Wow I would have loved to hear that speech! I'll have to check this book out.

ferfischer said...

This is so wonderful! I love it when I don't feel alone!

caryanne said...

WOW. That sounds amazing. I love the advice she gave about "comments" that seem well-meaning but really aren't.

bluffska said...

Would have loved to have been there too, having recently weaned myself from church because I don't feel like there's a place for us there, it's tough. If I had Madelaine's guts I'd share, but it's such a sensitive and personal issue, I haven't found a way to not take offense, still a work in progress!

Madeleine said...

Hi Alison,
Just wanted to let you know about a conference being held at Wesley Institute July 5-9 titled "Recapturing Jesus' Vision for the Church" I am speaking on tuesday and thursday morning. If you would like more details then please email me and I can forward to you, please let your friends know if they are interested,
Hope you and the family are well,