Supporting churches to include people with Autism and Learning Disabilties

Archive for the ‘family’ Category

Can we all be a bit more like Angela please?

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Psalm 131 (NIRV)

A song for those who go up to Jerusalem to worship the Lord. A psalm of David.

Lord, my heart isn’t proud.
My eyes aren’t proud either.
I don’t concern myself with important matters.
I don’t concern myself with things that are too wonderful for me.
I have made myself calm and content
like a young child in its mother’s arms.
Deep down inside me, I am as content as a young child.

Israel, put your hope in the Lord
both now and forever.

I’ve just come home after attending the funeral of one of our Good News Group members.  Angela had Down’s Syndrome and lived to be 61.  She lived with her family and was part of a church that loved and accepted her as she was.  She’d been at the GNG for many years but hadn’t been attending for almost a year due to being ill….but she is and always will be part of our family.  We will miss her very much.

You see Angela didn’t have very many words but those she did have she used to great effect.  She introduced herself to everyone – literally everyone – by going up to them with a huge smile on her face and greeting them with “Hello, my name is Angela” in a beautiful sing song voice.

Angela loved handbags, football and colouring in.  She loved music and singing worship songs and got so excited when we had puppets that we used to just get them out of the box and sit one next to her, just to share in her delight.  She had a twinkle in her eye that told us when she was joking or pulling our leg and Jesus shone in her and from her every pore. And Angela could say “supercalifragilisticexpialidocious” because that came from one of her favourite films.

Angela was never judgemental.  She had no regard for status or rank.  She treated everyone the same whether she liked you or you had done something that annoyed her (although she was never mad for long).   Angela lived each day just for that day and didn’t seem to worry about the future.  She did love and engage with everyone around her, no matter who you were.   The Queen would have had the same greeting as a pauper.

A bit like the Jesus I know.

I’m tired of people being excluded from church families because they are different, don’t fit the mould or are the wrong kind of person.  “Are you disabled? Well, you can’t do this or that.   Are you a woman…then, you can’t do this or that.  Are you LGBT?…then, you can’t do this or that.  Are you a foreigner?…well you can’t do this or that.  Can’t you keep you disabled child quiet?…then you can’t do this or that.  Are you mentally ill?…then you can’t do this or that.  We can’t have our churches run by these kinds of people.”  

 Did Jesus make up these categories…I don’t think so…

But these are the messages I hear from all kinds of Christians and church people.  We’re all shouting at each other and no-one seems to be listening.  (Except maybe the outside world who think what are they on about?!)

So, in my grief today I was reminded that Jesus came for all of mankind.  That no-one is excluded unless they think they don’t need him.   I want to be more like Angela and accept everyone, just as they are.  I am working it out as He teaches me what that looks like in practice.  I’m willing to be shown where I’ve got it wrong –  by the Spirit working in and through the people and situations I meet.   At the moment I don’t even know if I want to part of ‘the church’ in this country that’s doing a lot of shouting – but not about the gospel, only at each other.  But I expect God will sort my thoughts out about that eventually.

So will you join me in being more like Angela?  Angela’s name means “MESSENGER OF GOD” and here’s her message. It’s simple really.  Open up your arms and greet people in the name of Jesus.   No matter who they are.

Multi-Ethnic Group Of People Holding The Word Welcome

So I get to speak at a couple of conferences!

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This is unashamedly a plug for the Enabling Church “No Limits” conference happening in less than 2 weeks from today – in London – so if you can come PLEASE do.

The Churches for All organisation has been set up to bring together those Christian organisations that promote inclusion and speak out as people with disability under one umbrella organisation.  To pool resources and work together is the aim, and the conference is born out of this.   But it needs supporting, people need to come so I’m asking you to please try.  And if it is successful, I and others are going to see if we can get some support and a venue to put a similar conference on up in the north of England.

I’m doing 3 workshops at the No Limits conference this time.  I’m busy planning them this week!  (Only left it this late because the Puppet Festival was first – see below!).  But I am happy that I am doing one workshop about helping teens with disabilities grow and flourish in church as they develop into adults.  The second workshop will be showing people how to tell a sensory Bible story and it WILL be interactive!  Thirdly I will be looking at behaviour management in a children and young people’s group.  Some children with challenging behaviours have additional needs, some undiagnosed but I do have a few tips and approaches that just might help.  There are lots of other workshops too as well as the Key note speeches – so do take a look (and book).  Looking forward to seeing some of you there!

The European Puppet and Creative Arts Festival

This was run by One Way UK was last weekend and along with my daughter, we presented 4 workshops over the two days.  The first was simply an introduction to autism, with some tips about how to support children, families and adults with autism.

 

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The second was a practical session looking at different creative ways of communicating the Bible.  We split into two groups and used puppets and sensory stories to tell about Moses and the burning bush and about Jonah.

The third session was an introduction to Makaton and using signing to communicate faith words, in songs and in prayers and was enhanced by the arrival of a newly qualified Makaton tutor…thanks Linda so much for your help!!!

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Finally, I led a discussion session about how inclusive are our churches.  But this being a puppet festival, we used the puppets to show how diverse our congregations are and to act out different ways we exclude people.  It was lovely to finish this session with a prayer time – using our prayer tree and symbols to show how we try to include everyone in our group of adults with learning disabilities.

 

Thanks One Way Uk!  We appreciate the new puppet skills we also learned and I’m looking forward to seeing how we can develop some puppet activities in the Good News Group ministry.

“My church is on Tuesday and we have a train set.”

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This is a guest blog from Elizabeth Mellor who runs an Additional Needs Ministry called “Take 5 take5& Chat”.  I thought it would be good for us to look at what kinds of Additional Needs Ministries were out there and give you some ideas about what you could do too. 

Whitley Bay is a small seaside town in the Far North East of England (FNEofE) and is famous for many reasons. We have St Mary’s Lighthouse, the Ice Rink – and the town has been used as the setting for many films and music videos. Whitley Bay is also the first town to run a Take 5 & chat Café Drop-in, supporting families who have children with additional needs.

It is a sad fact that many churches struggle to be a truly welcoming place for families who have children with additional needs. I know that there are many success stories but I have heard of so many families who take turns to attend church, look after their own children in church settings, or give up and do something more family friendly on Sundays instead.

So I wondered what the church could bring to the lives of families in our communities who face extra challenges? I wondered what ‘church’ could look like.

I thought about being the parent at the school gate whose child isn’t meeting the same targets as others. Perhaps their child isn’t invited to parties. Perhaps the teacher often has stuff to report at the end of each day. Perhaps their child is excluded by physical reasons from taking part in everything. When the other parents chat about the weekend, the holidays, the classroom, the reading scheme, this parent feels isolated and alone.

What about setting up something that meant these parents, from different schools in the area, could meet together, as if at the school gate? What might this look like?

It’s a while since my children were at school and my next step had to be to see if this was still needed. So on 9th March 2015, after much prayer and planning, I launched a Facebook Page www.facebook.com/take5andchat as a ‘place to just be’ for those caring for children with additional needs. The intention was to reflect a face-to-face Café Drop-in on a Facebook Page. It hit the ground running and I saw quickly that the need was still there.

We opened as a friendly, accessible café at Whitley Bay Baptist Church in June 2015 and the Drop-in now opens every other Tuesday afternoon, all year round. The parents asked that we stay open through the school holidays as most activities close.

We have hot drinks and homemade cakes. We have activities and some toys – and a play leader in the holidays, but the children remain in the care of their parents. We are a friendly café, not a play scheme.

Neither are we here to directly promote our faith or attendance at our church on Sundays. We open for the parents to have a safe place to be, “an oasis”, as one parent said. God walks amongst us whether or not we recognise him.

Once relationships were established and everyone felt safe together, a number of the parents asked if we could offer any parenting courses, which we could, and did. (I am a trained Facilitator for Care for the Family’s Time out for Parents… but maybe that’s another blog post!)

So now there are over 30 families who ‘drop in’ to a room at the side of our church. They have found support and encouragement. They come with friends, they make new friends, they share the names of helpful teachers at local schools and tell each other where to go for further support and advice. They keep in touch via a closed Facebook Group. Whenever our team is a bit stretched, these parents eagerly step up to help set up, serve at the ‘counter’, clear up or talk to new parents. Because Take 5and chat Café Drop-in is their place and they belong.

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Most of the parents have never been involved in any kind of church before.

Some ‘sign in’ on Facebook at the church.

Many now describe our church as their church.

On Tuesdays. With cake… and a train set.

 Our Founder & Coordinator, Beth, is available to talk with your team, or to your church/faith group, about setting up a Café Drop-in for those parenting children with additional needs. Sometimes having someone from outside explaining it can really help! (Fee is dependent on time and distance, and is to cover costs, please ask.)

If you would like to run a ‘Take 5 & chat’ Café Drop-in, using our name and logo, there is a one-off License fee allowing use of our name and logo to named individuals. We send you digital copies and a certificate. You can use this for your closed Facebook group, on mugs & aprons. (There is a good supplier!)

If you choose your own name, then please acknowledge us if you use any of our general wording or ideas. We can still help you get started!

Email    info@take5andchat.org.uk

www.facebook.com/take5andchat  

https://twitter.com/take5andchat

Website (coming soon) www.take5andchat.org.uk

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Writing Sensory Stories for Teens with Additional Needs (Part 2)

photo from https://eastersealshouston.wordpress.com/category/uncategorized/page/2/
photo from https://eastersealshouston.wordpress.com/category/uncategorized/page/2/

After writing about how to write sensory stories for young children, I now turn my attention to teenagers. This is a tricky post, because by the time they reach their teens, young people with additional needs, learning disabilities and/or autism are growing, developing and making the transition from childhood to adulthood… The same as any teenager.  By this age, their personalities and abilities are becoming more established.  They are unique, amazing and will not fit into a neat box.  So we can’t say, “this is what you should do for teenagers with additional needs”, because each one will need a more personalised approach.

However, I’m going to share an example and some ideas.  Starting with an autistic boy of 14 who I used to support in the Sunday children’s programme.  He was autistic, verbal and wanted to be part of the group.  He loved joining in the social activities and games (once they were explained in a way he could understand) and loved dramatising Bible stories.  However, he was unable to access the Bible study part of the session for a number of reasons:

  • They read from the Bible. He couldn’t read too well.
  • They then spoke at length about the passage, it’s history and some quite in depth analysis of the passage.
  • It was all done far too quickly for him. He just couldn’t keep up with the pace of one idea moving onto another.

For this boy, sensory stories enabled him to access the session alongside his peers, drawing from the same passage and learning one important thing about God each time.  For any teenager that needs a simplified amount of language, we can provide that without talking down to them or babying them. We must respect their age. Some parents feel unable to even try teenage groups because the

The same principles of story telling are used.

  1. One sentence which is the main teaching point of the passage. It usually is a central truth about God, Jesus, the Holy Spirit or the gospel. It is ok to repeat these points as we want our teens to really understand their faith in the Lord.
  2. Five to ten (ish) simple sentences that tell the story and move it through the main events. This is difficult as the writer needs to be able to ignore waffle and minor details to get to the point. If there are details that are essential to the meaning they need to be included.  It is at this age we should be including a greater depth of Bible knowledge and not exclude parts of the Bible because we think they are too hard to understand.  Here’s an example from 2 Kings when Elijah hands over to Elisha.

 

1.     Elijah knew it was time for him to leave the earth.  Elisha was his disciple.  He followed Elijah everywhere.

2.     Elijah said… “Stay here”. But Elisha said “No, I will go with you.”

3.     Elijah said again… “Stay here”. But Elisha said “No, I will go with you.”

4.     Elijah said a third… “Stay here”. But Elisha said “No, I will go with you.”

5.     Now they were by the river Jordan.  Elijah put his staff (stick) into the river and the water separated.  Now Elijah and Elisha could walk across.

6.     God took Elijah up to heaven in a whirlwind. But first Elisha asked for one thing.

7.     “Give me twice as much of God’s Spirit as you have.” He asked.

8.     Elisha saw Elijah go to heaven. He picked up Elijah’s staff (stick) and put it into the Jordan river.

9.     The water separated. Elisha knew God’s Spirit was with him.

10.  The Bible says God’s Spirit is with us. We can pray and the Spirit will help us in many ways.

Pray for God’s Spirit to help you, teach you and show you all God’s love for you.

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  1. The sensory experiences depend on the young persons needs at this point. With this boy, one for the whole story was enough to give him a sensory link to the story. So for this Elijah story we would maybe have a cloak or shawl to use a ac cloak as this is a central prop of the story.  I might have added some water when each of them parted the Jordan too.

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The main issue for young people with additional needs is often social inclusion.  They go through puberty, identity formation, hopes and dreams for the future the same as other teenagers. Being put with younger children doesn’t help this at all.

It is we that have to be more creative and adaptable.  There’s forever to study the Bible for our other teens. Learning how to come alongside and make the Bible accessible to someone with additional needs is a lesson of greater worth than gold.  Then you have a peer group that don’t exclude but are able to communicate the Bible to someone else.  It makes them think and consider the important points and what it really means.  So, teach the other teens to write a story in this way now and again.

And with their permission – here are some comments from the Additional Needs Alliance Group.  People who have children and groups with teens with additional needs…

Claire Webb‪ For our daughter it’s been opportunity to be part of things! She very sociable and children and young people in a wide age group are very friendly towards her and don’t exclude her (especially young people who’ve grown up with her!) but adults find it harder to include in practice!

Rosie Thornton‪ Thank you for asking this Lynn. My teenage daughter cannot really access discussion groups or events where activities are not tightly structured so we haven’t tried Christian youth groups.

Mark Arnold‪ I suggest that the primary difficulty is that there is not a “one size fits all” answer to this. Every young person is different, their needs and abilities will be different, so an answer that works well for one young person will not necessarily work for another, even with two young people with the same additional needs. Forming an individual strategy for each young person, which they and their families help to create, and which draws on what is working well in other settings (e.g. school, home etc) and which all the leaders of the group understand, is a vital step towards successful inclusion. That plan needs to cover a range of areas including learning style and ability, understanding key triggers that cause difficulties e.g. loud noise, how to communicate most effectively (i.e. not just by speech) etc. Having said that, one common barrier to accessing church is simple acceptance by the other members of the congregation or group. It’s a hurdle that many young people and their families fall at due to negative reactions from others (including adults that should know better!)

 

Fiona Tyler‪ My daughter will be 13 on Saturday! She is cognitively very able, but because she is non-verbal it is very difficult for her to join in discussions and keep up with her peers. Also socially, because she is in a wheelchair and looks different, her peers are very wary of her and don’t naturally relate to her – this has got harder as she has got older (little kids are much more accepting!). We are trying to raise awareness by openly talking about my daughter’s disabilities and also her similarities, but it is a slow process. I agree very much with what Mark says, it is probably a battle that is unique for each young person, and the teenage years can be very difficult as they try to come to terms with, and accept, their own disabilities and differences, when all they want to do is fit in with their peers and the rest of society.

Nancy Gedge‪ Yes – the language base of much work with young people means that Sam can’t access it in several ways. 1. The concepts are difficult for him to grasp.       2. His communication difficulties mean that he finds it difficult to feel part of things (anything) with typically developing children.    3. Times – he is often tired in the evening.    I often wonder if the way to witness to young people like him is through the ‘doing’ – how can he, who is so often helped – serve others? What creative opportunities are there for him? Could he be involved in an art/music project with other young people at church? How could technology be incorporated? How can he be made to feel less isolated? Less different?   And, how can adults be encouraged not to baby him, or see the solution to his inclusion as a box of cars in the corner?

Highstreetmethodist Underfivesworker‪ I know the child is not yet a teen but as a church whose Junior church starts off altogether and then simply meets in different parts of the same room we let the child decide which activity he wanted to do – regardless of whether it was his age group or not.

Ros Bayes – Ellen was always well supported in children’s ministry, but when she outgrew it there were really no appropriate youth activities she could participate in. The good thing about that was that it gave her sister somewhere to go without her at a time when she needed those breaks. The sad thing, for me, was that there were some real moves of the Holy Spirit among the young people, and they bypassed her.

Autism and your church

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My day job is supporting autistic pupils in schools and I love it. Listening to and working with these children teaches me so much.  For ten years and with hundreds of pupils, I have developed a bank of strategies and ways of working that really work, and the understanding that at the centre of it all is a child who can communicate their likes, strengths, dislikes and needs … if you know how to listen.

Helping people with autism feel fully part of our church family and ministries (as receivers and givers using their gifts) can be approached in the same way.  I wrote about “being an advocate in your church” and “15 ways to include people with additional needs”. At the heart of it all are PEOPLE we can listen to, share the gospel with and disciple.  My blog this week is about sharing two excellent blog posts from others.   First; Ann Memmott is an autistic woman who has a great gift of communication…she can explain what being autistic is like and how she finds the responses she gets from church people.  What I like about Ann is that she doesn’t just explain, but she also suggests ways to overcome the barriers or issues, and I have learned a lot from her, just from listening.

Here is her post titled “Othering” from 11th July 2015

http://annsautism.blogspot.co.uk/2015/07/othering.html

It’s sometimes tough stuff, trying to encourage churches to welcome all.
Some churches are fabulous.  Their leaders are enthusiastic about learning.  They enable their teams to get good training.  They fundraise and allocate budgets to ensure that everyone can get to a service and feel valued.  We know that such churches see their congregations…and finances…increase year after year.  I am fortunate to have found several like this.  But some others…well…I want to talk about feeling valued. What it is.  What it is not.  And about the ‘othering’ of people like me.  Born autistic.  Autism is a sensory processing and social communication disability, nothing to do with ‘bad behaviour’.

So often, disabled people or those who live with differences are tolerated.
‘Tolerate’ is what you do when you let someone sit next to you… whilst you feel uncomfortable and hope they sit somewhere else….but you smile at them in a false way.  The thinking behind this is, “I am such a good Christian for allowing you near me.  After all, someone like you being in my church spoils my experience of God.  You should be thankful to be allowed here”.  Had that happen a few times.
Now, the strange thing is that if it was done to them, other folk would immediately see that as intolerance.  As prejudice.  As falseness.  As fear or hate.  But it’s something that folk like me are often expected to be grateful for.  I think not.

Sometimes disabled folk and others who live with differences are the subject of ‘awareness raising’.  This means that we get to stand up in front of everyone and explain all the things we cannot do.  All the things that make us feel really small and really bad about ourselves.   And then, people are ‘inspired’ by us.  “You brave person, coming to church!”  “Wow, people like you can talk!”  “So do you live in a residential home?  Is that your carer with you?”  I’ve had it all over the years.  We are not friends.  We are not colleagues.  We are not equal.  We are exhibits.

Now, the strange thing is that if this was done to them,  other folk would feel really uncomfortable.  But it’s something that folk like me are expected to be grateful for.  After all, we’re talking about autism now, aren’t we.   Yes, yes we are.  In a way that demeans and uses me, and has no regard for the after-effects. Often I’m expected to do this for free.  As if it is a special treat for me to be allowed to talk to church people about embarrassing things and then go home feeling bad. That’s not brilliant.

Yes, people like me offer training to the outside world.  Training where we knowingly do stand up in front of many others and explain our ‘deficits’.  Our difficulties.  Training where we are an example to be assessed, a thing to be stared at.  And after each session, we go home to our families and friends and partners and children…and try to restore our sense of self-worth.  Important stuff, awareness-raising. But it’s nothing to do with valuing us.

What does valuing us look like?  What does it feel like?  What does it sound like?
It feels like we are seen as people, as colleagues, as friends.  It feels like people want us to sit next to them.  It feels like we’re offered the same chances as others to show our strengths.  It feels like we are enabled to feel safe and supported, of course – but in consensual ways that ask us.  In quiet, invisible, respectful ways.  Training like that happens in many places, and it’s always a joy to work with such groups.

It doesn’t look at us as a cost burden.  As a time-waste.  As a ‘danger’  (frankly we are no more likely to be dangerous than you are).   It doesn’t think that Church happens ‘elsewhere’ for us.  There are no churches for autistic people.  None.  It’s like a thing where Jesus got his team to hand round food to the 5000 and left all the autistic ones hungry and thirsty.   Do you think that’s what happened?  Me neither.

We are God’s loved children too. Valuing us doesn’t allocate the budget and team and support to everyone but us… and then claim no money, no spare time.  It doesn’t involve ignoring bullying of us, or blaming us for the bullying.  It doesn’t involve laughing at us or using us as some sort of freak show.  Or encouraging others not to help us.  Or encouraging others not to talk to us, by pretending we are a nuisance.  We’re not exhibits or dangers.  Truly we are not.

We are your friends.  We love Jesus and are Christians who want to share our love and care with others, just like you do.  We have families, just like you do.  We have passionate interests, just like you do.  The church should not get to pretend that we are ‘other’.  Not in front of God we’re not.

It’s our church too.  It belongs to God, and God says yes.    That’s a reality that every church already has to come to terms with.  Plenty of us are willing to help.  But know the cost, please.  And value the time and exhaustion and despair that it causes, especially when so often the response is ‘go away’, a budget-withholding, silence-enduring, “We don’t want your sort here”.

You are loved.  We are not your enemy.  Learn about our gifts to the church and to God.  Value us for who we are, God’s children, made in God’s image.

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Second, I came across this blog in my travels around the net and loved it’s positive suggestions for things to say to autism parents:

Read more: http://themighty.com/2015/04/12-great-things-to-say-to-parents-of-kids-with-autism/#ixzz3fsFhlINO

But now I realize that it wasn’t fair to tell everyone what NOT to say to a parent of a child with autism, if I don’t give some advice on what TO say.

Just like every child is affected differently by an autism diagnosis, each parent is also affected differently. A comment that I believe is kind and encouraging, another parent may see as rude and condescending. Needless to say, I can’t give you an exhaustive list since every situation is different, however, I have come up with a few things people have said to me over the years that clearly left a mark and not a scar. So, this is a list of things TO say to a parent loving a child with autism that made me smile and want to hug them rather than hit them or scratch their eyes out.

The one thing to remember, regardless of the child or the parent, is to always be accepting, be aware and be kind.

1. “Wow! I can’t believe how far he has come!”

Even if the distance from where he was to where he is seems miniscule to you, chances are it is a huge, expansive distance to my son and me. Commenting on progress is a beautiful thing to say, but only if you really see progress or change. We mothers are like dogs; we can smell your fear in an off-handed, don’t-know-what-else-to-say remark. So if you do believe it, then say it. And be prepared to be hugged.

2. “He is so good at… [insert anything here].”

Whether it’s a perfect Jim Carrey imitation, how long he can sit watching the same episode of “Thomas the Tank Engine” and recite every word perfectly, or his ability to memorize all the details of every earthquake in California’s history, point it out. Point out the positives. See the positives. We see it. We know it. We love when you do, too.

3. “My friend’s, sister’s, cousin’s, great aunt twice removed’s son has autism and he is in college now.”

Yeah, we know that your friend’s, sister’s, cousin’s, great aunt twice removed’s son is not our child, and we know that autism is a spectrum of strengths and struggles, but, hearing success, hearing good news and having you share that in a kind, accepting and compassionate way, makes us love you, even if we don’t know you. I hope you like hugging strangers, because this may get you an even bigger hug than #1.

4. “Is there anything I can do to help?”

Asking this question in the middle of aisle six in the busy, loud grocery store where our child is currently having a huge sensory meltdown as we try to calm him down and discreetly scooch the glass shards from the spaghetti jar that just missed your head under our cart, rather than staring at what you believe may be an “undisciplined child” having a temper tantrum, may possibly make you the hero in a blog story that goes viral on social media three hours after you get home from the grocery store.

We know people are staring. We know people are judging. We know people don’t get it. That’s why those eight simple words from just one person are beautiful. Oh, and sorry about the spaghetti sauce on your new shoes.

5. “He feels so much, doesn’t he?”

This is a kind, compassionate and understanding way to say that when you see our child crying easily, melting down regularly, and being terribly inflexible, you are letting us know that you recognize that there may be more than meets the eye and that our child is not bad, and neither are we.

6. “He is fascinating.”

Not weird, not odd, not quirky. The way his mind works is fascinating and often has me in awe and wonder. I love knowing that you see his mind as extraordinary and not as something that is broken and needs to be “fixed.”

7. “He really loves you.”

Yes he does. There is such a misconception that children with autism don’t feel love, that their emotions are too bogged down by autism to “feel,” but, believe me, they feel love, they know love, they give love. And on days when it’s hard, on days where we have lost our patience, raised our voice and dried countless tears, we don’t feel very loveable, so it’s great when others see and feel that love, too. We know that our child loves us like no other and although that love may look “different,” it is never to be trivialized or minimized.
O.M.G. If you only know how many times a day I have wondered the VERY same thing. “If only I could get inside his head,” “If I only knew what he was feeling,” “If only he would let me in” has crossed every parent’s mind countless times. Knowing that you take the time to wonder, too, well, you have just gone up higher in rank on the Favorites list on my iPhone.8. “I wonder what he is thinking?”

9. “What is autism and why do they call it a spectrum?”

Yes, maybe we are tired of talking about The A Word, maybe we want people to see past autism and just see our child, but, we will never turn down an opportunity to educate someone about our child and debunk the “He doesn’t act like ‘Rain Man’” myth. So please, ask away.

10. “He has taught me so much!”

These kids see the world differently and if you take the time to get to know them, really get to know them, you will open your mind and your heart to their world and you will be better for it.

11. “I brought wine.”

Even though you might not fully understand what loving a child with autism is like, the fact that you are here, on our doorstep, holding a bottle of wine and trying to understand, well, there are no words to express our gratitude. We love that you feel like we are in this together, so grab two glasses while I get the bottle opener.

12. “I have Velveeta Shells and Cheese (or whatever the one and only type of food is that child will eat).”

You win. Game over.

When trying to decide what you should say, keep in mind that these children and adults with autism may have severe language deficits and they may not be able to say a word, but that does not mean they aren’t communicating with you. Take their lead. Maybe no words are necessary. Maybe you don’t have to SAY anything. Maybe it’s just a kind smile, a door held, making eye contact with us or a kind “hello” to our child.

However, if we initiate the conversation, if we say the words, “My son has autism,” just give us a knowing look, a kind smile and ask, “How is he doing?” We may say “fine” or we may break into a 10-minute long discussion about how far he has come and how far we know he will go. Whichever it is, trust me when I say, we will always remember that you asked.

I hope you have found these two blogs helpful.  I have!

Being an Advocate in your church

I suppose you might be reading this because you have some interest in making your church more accessible for people with disabilties. I don’t know if you are disabled yourself, or are a parent or carer, or maybe you just see that there’s a part of God’s family missing in your church.  I don’t know what term you prefer, a label or none. I use different terms on purpose, but most of all, we are God’s children in Christ.  So welcome, brother or sister!


I asked the wonderful people in the Additional Needs Alliance what they thought made a good advocate.  Anyone speaking on the behalf of others is essentially an advocate.  It had me thinking about the nature of advocacy and how it might work.

  1. The first and most important point was to be a good listener.  To be able to speak on the behalf of others, you need to be able to know what they would say. BEWARE….this is where we face the ever present danger of ASSUMING.  We patronise people if we assume we know what they would want or say without really knowing.  Even if people cannot use words, there should be opportunity for them to make their thoughts known through other communication methods. Sometimes just being with them, seeing how they respond to different situations can give us all the clues we need to understand what a person likes or doesn’t.
  2. Relationship is at the heart of advocacy.  If we wish to speak on the behalf (or even better…alongside) people with disabilties, then we need to build friendships and give them our time.  If you want to suggest changes in church, set up a ministry or change attitudes then relationships give us the foundations for real action for real people.
  3.   Is it because they cannot speak for themselves?  Going back to point 2,  why are we taking on this role of advocate?  It is better that we open up the way for a person to speak for themselves, supporting and enabling them rather than speaking for them.  I would love to take some of our group to a PCC meeting and let them use symbols and Makaton to tell everyone there about their experience of church! (They’d all be up for that!)
  4. Knowlegde is useful too. We have an amazing resource in the Internet, social media, blogs and access to research at our finger tips. This too comes with a BEWARE warning…each article or blog is an individual experience and we need to take a wider view, bringing all aspects together.  For example, I have learned so much about what it is like to have autism from many fantastic articles and blogs,  that I now understand how faith develops and can be understood despite some of the differences in thinking and processing in autistic people. I know that some don’t mind being called autistic, that it is their identity.  I would really recommend the Oxford Diocese advice on supporting people with autism in churches. Written by an autistic person, the lovely Ann Memmott. http://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf
  5. Be gracious. As soon as people start to feel threatened they get defensive and we end up in a cycle of bitterness. I have found small steps work best, especially if you are suggesting a change to a well established way of doing things.  Even if it seems like it is a long hard struggle, get people around you who will pray and remind you of grace.  In all things, Christ will be our greatest advocate.  And pray. And forgive. And pray.
  6. Be bold. Pray first. Speak up when something is clearly unjust and damaging to a person with additional needs. They often can’t or feel able to speak up for themselves, especially if they feel very hurt or excluded by the actions or attitudes of the church.  This bit scares me a lot.  But an important part of advocacy is not to let wrong things continue.
  7. If possible preach inclusion, preach the gospel in as many ways as all people can access it. Make discipling and enabling people with additonal needs part of what the church does.  Leaders who do this will be great advocates and role models for their congregation.
  8. There is another kind of advocacy I have come across more and more, that is speaking up for people  with additonal  needs in society. Since the general election there has been a lot of fear about how further cuts will affect vulnerable and disabled people. Christians are speaking up, organising protests and pleading with the government to look after, not make life harder for disabled people to access what the rest of us take for granted.  Look at the campaign by Compassionate Britain http://compassionatebritain.org.uk  if you are interested in this.

It seems that the key to advocating is definitely getting to know people with additional needs, and much of it is done by people who are family members. That places a great burden on them, having to advocate and care for their families. No wonder church becomes such a difficult place to be for them. There must be a better way. When I look at how Jesus cared for and welcomed people who were weary and had all kinds of needs, then coming to him was a gentle and wonderful experience. I am just thinking aloud here. so many of us want to see inclusive churches. Some are and we praise God for them. I am struggling to understand how people have been hurt, turned away and ignored in the one place they shouldn’t be. I am so glad for the wonderful pastors, vicars, youth leaders and other Christians who love all people and will do all they can to include them.  I’d recommend to all of you to look at becoming a Roofbreaker, with Through the Roof Charity.  Here is a structure and resources to help you become an effective advocate in your church.  http://www.throughtheroof.org/info-and-resources/be-a-roofbreaker/

But don’t forget….it begins with listening….

15 ways to include children and adults with additional needs in church.

It is a privilege to be asked for advice on what a church should do to include people with additional needs. To make them feel welcome, to make them be able to come along each week and it be a place of refuge and strength for them.  The thing is, our church, like most others, are learners…we haven’t got all the answers or got everything right, so I turned to the lovely people of the Additonal Needs Alliance and asked them what advice they would give. This, along with a couple of blogs I have read recently, has helped me put together this post.  So thanks to Beth, Mark, Ruth, Barbara-Anne, Anita, Fiona, Liz, Rachel and Bea!

  1. Have a designated person to oversee and coordinate the support and overall vision of the church for inclusion and practical implementation of support for people with additional needs. This is like a school has a SENCO.  Mark Arnold from Urban Saints made this point.  I agree, all churches should have a SENCO.
  2. Understand what having a child or adult with additional needs in your family is like. It is 24/7.  It is an abundance of love for them standing alongside constant care, worry, sleepless nights and fear for their future. Every day is full on, no day is the same and parents and carers never switch off. They often don’t look after themselves too well (they don’t have time) and often give more of themselves to help others who are carers too.  Sometimes they feel grumpy and can be short of patience with small minded things.   Often they are sleep deprived and coming to church is not a break or a rest. It can be a minefield of fear, anxiety and stress.
  3. Listen to parents and carers.  They know their child best.  They may not yet be experts on the child’s condition, but they are learning.  However, do not tell them what you know; as often what we know is a generalisation;  but ask them if you can learn alongside them.  Even though I am an autism specialist teacher, I will always ask a parent how autism looks in their child, because each autistic person is uniquely autistic.
  4. Listen to the child or adult with additional needs. They know themselves best. They know what they like and don’t like. If they cannot speak, spend time watching them and learning how they communicate.  Think highly of what they can understand and achieve.  They have gifts that the church can be blessed with.  Jesus has a place in his body for them too and it cannot function well without them.

  5. Don’t let your congregation judge. Don’t even let one little “tut” come out of anyone’s mouth! Parents and carers of people with additional needs get plenty of that out there, in society.  It has no place in Jesus’ church.
  6. When you have listened you can ask some practical and patient questions. What works for you?  What works at their school or daycare centre? Is there any of these things that we could do to make church better and easier?
  7. Do….The things you can from the answers above. One small thing can make a huge difference to the child or adult with additional needs and to their family or carers. When you’ve done one thing, don’t think you have done it and can ignore them from then on…do another thing…and another.
  8. Consider getting good training for church leaders.  (Everyone who leads or volunteers for anything!) Have speakers who have additional needs.  Keep talking about diversity and learn together.  Prospects, Through the Roof, Liveability, Torch Trust, and others can be found on the Churches for All website.  Urban Saints do a great training course called All Inclusive and is highly recommended.  All these will provide or find training for you.  The local special school may have some Christian staff who would be willing to help or do some training for you.
  9. Keep reviewing how you are supporting the child/adult and their family or carer. Ask them how you are doing. Ask the people they talk to, just in case you get “I’m fine”. We all know “I’m fine” doesn’t mean everything is ok, it often means ” I don’t want to make a fuss”.  Encourage them and a friend of theirs to be more honest.
  10. Set up some special activities that are preferred by the child / adult with additonal needs and for once in a while, get other children or adults to come alongside them in THEIR comfort zone.  So whether it be a child who loves Lego, (have a Sunday School session based on Lego once a month) or an adult who uses Makaton (let them sigh the Lord’s Prayer in the service) bring their interests and strengths into how we do church.
  11. Teach the congregation about Jesus’ love for all people.  Send them out to serve in daycare centres, do assemblies in special schools, visit people with additional needs in their homes or talk to families with additional needs in the supermarkets.  Bring children up in the church to stand up for those who have additional needs at school.  Show them how to approach and be friendly, make sure they know the names of any children with additional needs who come to church, however infrequently.  Tell them to smile and say hello, when they see them, and not to stare when they make noises or behave unexpectedly.
  12. Have high expectations of God and his word.  Find ways to open up the wonderful riches of the Bible. It may mean you do your weekly services a bit different. It may mean your preaching takes on a different style completely.  You may need to use differnt forms of communication, like pictures, or signing rather than just talking for 20 minutes or more. Maybe all the church could learn some basic Makaton or BSL signs.
  13. Celebrate the diversity of God’s family.  Watch and listen to people with additional needs and let them show us how they connect with God.  I want to tell you about Becky who uses a special computer with eye-gaze technology to communicate. She drew this picture of the Easter story    Becky's picture        And another little girl who has autism, who danced around the cross on Easter Day, making people experience her joy and abandonment.  I want to tell you about our adults with learning disabilities who pray for us, serve in the church and love Jesus.                                                                                                        IMG_0237
  14. Know it is God’s work to save.  Then pray, be mouldable and trust him.  A willing heart can be used by God.  He can change us to be his family together. Be willing.
  15. Finally (for now!) is to remember that you don’t need any qualifications or even experience with additional needs to be a church who makes people welcome and part of their congregation.  All Jesus asks us is to follow him and do the things he did.  I don’t remember him ever “tutting” at someone trying to come to him….do you?

This is just a guide and summary of all the great advice people who have additional needs or who have children with additional needs have given me over time. We have put as much as we can into practice in our church and are still very much a work in progress….like we all are.  I hope you find this useful and encouraging….let’s all work together and let Jesus build his church for all.

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