Amazing Stories About Some Amazing Young People

I’ve been thinking through what I’m going to say at the new “Neos” conference - a conference designed to "Equip all for family, youth + children's ministry". 

Aside from some sessions in the Additional Needs Alliance stream, I’ve been asked to do a 7 minute “Quick Insight” on additional needs.

What can I say in 7 minutes? 

What I want to do is to be positive!

Then I felt a blog post ‘coming on’. It wrote itself whilst I was in the bath…..! (I do some of my best thinking whilst in the bath!)

Stolen Dignity

Dignity: “The state or quality of being worthy of honour or respect.”

We use the word dignity in many ways, and as a result its real meaning has been eroded a lot over the years. 

I'm often described as dignified - but by that most people mean I don't complain much (they don't know me very well!)

Euthanasia for Children

Last December, history was made in Brussels.

Twin brothers opted to be euthanized together.

The two men, 45, from the Antwerp region were both born deaf and sought euthanasia after finding that they would also soon go blind.

It’s not just the fact that they were twins. The Telegraph said that “The case is unusual because neither of the men was terminally ill nor suffering physical pain.”

The paper then went on to report that  “Just days after the twins were killed by doctors, Belgium's ruling Socialists tabled a new legal amendment that will allow the euthanasia of children and Alzheimer's sufferers.” (You can read the full article here)

The rules in Brussels currently state that euthanasia can go ahead if “the person wishing to end their life is able to make their wishes clear and a doctor judges that they are suffering unbearable pain”.

After this news, there will be many Christians reaching for their pens to write to their MEPs. That’s good. But can I put something else to you.

If we as Christians are going to complain and attempt to make euthanasia illegal - especially when it comes to children with disabilities, we also need to look at helping to provide a viable alternative - or at least try to understand why people find this to be the only alternative to living with illness and pain.

These Issues Are Not Always Cut And Dried

Look at this from the point of view of a young person with disabilities. 

This is what they often see ahead of them:

• They see adults with disabilities having all financial help withdrawn because of cuts in disability allowances feeling that the only way out is suicide.
• They see older friends struggling with inadequate provision of care, where the carer due to come and help them doesn’t even turn up, or if they do turn up, barely having time to help get them up. 
• They see friends who have opted for supported living accommodation being abused or not adequately cared for.
• Some can’t see themselves having an amazing future, getting married or having kids of their own. 
• Some can’t see themselves getting jobs - especially since much of the support that used to be supplied to help them in the work place has been removed in this latest round of cuts.
• They read comments from high profile people making comments about “aborting babies with defects”.
• If they know they are going to need care into adulthood, the prospects can look bleak. They don’t see that for some it works out - because for the majority it doesn’t.

All of this can compound the feeling that they are a drain on society and have no right to be alive.

The Natural Next Step?

Can you see why they might take up the option of euthanasia? Surely it's the next logical step?

In health care, children are already allowed to make informed choices about their own care - and that is good. Why is it so unbelievable that the natural next step would be opting for euthanasia?

The Reality

Let’s look at it from another angle. 

For some babies who are born with such severe issues that they cannot live for many weeks without invasive care, and then in considerable pain, it is not unusual for only palliative care to be given. 

This decision is reached along side parents and isn’t the default position on care. When is it decided to treat them, the baby only usually lives a matter of weeks longer and often in a lot of discomfort. I have been a nurse caring for babies in both situations and both are agony for the parents.

If you want to take your campaigning to the extreme - you have to consider these situations too. What support can we give in both cases?

As a nurse I looked after a youngster from birth to death. Just over a year. Her issues were severe and her parents decided they couldn’t cope and put her up for adoption. She never got out of hospital. She was assigned foster parents, but fostering a child who is permanently in hospital never works.

Her life was all about keeping her alive at all costs, even though it was agony for her. Eventually - after much talk, it was decided to give only basic care (Nutrition and cuddles). Her first smile was in my arms as she passed peacefully away, free of needles and uncomfortable plastic oxygen head boxes. Was that wrong? If you think it was - please go and hold a child in obvious pain 24/7 because we insist on keeping them alive….just because we can. Can you, as a Christian provide the extra support needed if this course of action wasn't taken?

I am against euthanasia, but if if you are going to campaign on the right to life….. We need to consider these things too. 

Campaign by all means, but be careful. 

Consider all the options and remember - we also need to provide an alternative. Our churches need to be up to the task of helping practically and providing the much needed pastoral support too.

"Thankyou Jesus You're My Friend" Amazing Stories Series (#1)

Around 20 years ago at a  large event, I was charged with looking after a 9 year old boy who had Down’s syndrome - he was what we affectionately call a “runner”. He would have given Houdini a run for his money in the various ways he could find to try and escape! This was in the days before children’s groups had specialists on their teams, so it was rare to be given a role like this. I was given the role because the leader of the team knew of my training and vision.  

Because I was also a musician I had to sing/play in the band. This meant I had to leave my young charge by the OHP (That dates this story!!) with another team member, where he would help with the song words.

Looking from the outside, it appeared he had no interaction with the spiritual side of the programme at all, and very little with the rest of the programme. It was hard work!

We used a lot of makaton signs as actions for songs, but this young lad would not sing or sign for the whole week….. That was, until the last day. On the last morning, with a big grin on his face he signed “Thankyou Jesus, You’re my friend” along with the song we were singing.

For all his appearance of not engaging, he had taken a profound message on board.

There were other positive things that came out of this: That particular team decided to make additional needs carers a permanent position on their teams. I also wrote to the head of the event - it was a very ‘frank’ letter about the need for looking at better additional needs provision within the children and youth programmes. I didn’t expect to get a reply - but I did. And year on year the additional needs provision grew and improved to the excellent work they do today. 

I’m pretty sure that other’s wrote letters about this too, so the change wan’t just down to me…… but I am blessed by the fact that I am now the disability and additional needs advisor for that same festival. 

This is just one story of one child who has made a difference. He doesn't know it, and I doubt his family do either.

Over the next few days I hope to post a few more encouraging stories about working with children who have additional needs. I have so many to choose from.....!

I Have a Dream......

Let me introduce you to Gemma….

She’s 8, is autistic and love’s Jesus. But sometimes - she doesn’t love Jesus.

Sometimes she can be profound with her comments about Jesus, sometimes she just doesn’t want to even talk about Him - preferring to play with some lego, giving the impression she’s not listening. But she is listening.

I don’t understand how her faith journey works - I know God does. Her journey is important to me, the fact I don’t understand it isn’t.

The other thing that is important to me is how other people view Gemma and others like her. 

Mostly, she is ignored. 

The times she is not ignored are those times she makes a loud comments in church (Usually, an appropriate comment!). Or when she struggles to wait in line for a drink or a biscuit, or cannot wait her turn in a game - maybe shouting out an answer during the children’s talk in the main service. In other words, those times when she goes against what us “Nice” Christians consider to be appropriate behaviour in church. Other than that - she is anonymous. 

No one notices the depth of her faith, her amazing knowledge of the Bible or her ‘straight to the heart of it’ prayers. No one notices her parents either, even though they are desperate for support and conversation.

The same goes for many other children and adults with special needs or disabilities - they and their families are anonymous and ignored. 

I often quote Joni Eareckson-Tada: “The Blind can see with the eyes of Christ, the deaf can hear with the ears of Christ, a person with a learning difficulty can think with the mind of Christ”. This is so true, but who listens to what they have to say about it?

Everyone has their own thoughts, ideas and opinions, things they feel strongly about - those who have disabilities and special needs, child or adult, are no different. And surprise, surprise - it’s not always about disability!

I have a dream - I want them to be heard. I don’t want them to be anonymous anymore.