Supporting churches to include people with Autism and Learning Disabilties

Posts tagged ‘#barriers’

A very special talk, challenging how we ‘do’ church.

As promised, here is the full talk from Alma – her words are better than mine and so I am delighted that she has written this down for us. 

Last Weekend I was invited to share my thoughts about Mental Health and Church at a meeting of the Lancashire Roofbreakers.  Lynn has kindly allowed me to share the substance of that talk here.

How Safe is my Church?

It is interesting to consider how quickly our minds move towards physical and accommodation issues when considering this question. Or am I a minority of one?  I find it interesting when listening to others whose concern focuses on other disabilities. The need for ‘inclusion’ seems to equate to making sure people can all join together in one big crowd and how we manage to make it physically possible for that happen. This includes the size of our buildings, accessible doorways, seating etc.

As someone who has grown up in churches of all shades and opinions and who lives with a complex mental health condition the focus on the physical surrounding is irrelevant to me in helping me to feel included within the Church Family.

My biggest problem with Church is the people.  Not the attitude I encounter (although stigma remains a massive issue) but the fact that Church by its nature forces me to spend time with large numbers of people.  Let me explain why this would be a problem to me.  I have a diagnosis of Borderline Personality Disorder. It is sometimes now referred to as either Emotionally Unstable PD or Emotionally Sensitive PD.

Marsha Linehan, an American Clinical Psychologist who has created an effective therapy for BPD called Dialectical Behaviour Therapy and who finally admitted she herself shared the diagnosis, has summed up the experience of living with BPD as follows:

 ‘Borderline individuals are the psychological equivalent of third-degree-burn patients.  They simply have, so to speak, no emotional skin.  Even the slightest touch or movement can create immense suffering.’

Let’s just pause for a moment and imagine that the presence of other human beings, of any number can feel excruciating, then let me ask some questions about ‘how safe’ the way we do church, especially on Sundays, feels to me.

How Do We ‘Do’ Church?

  • Medieval

If you spend any time visiting the large spectacular buildings of our historic churches and cathedral, we can observe how the medieval church gathered.  It was often the largest building towns and villages and therefore was used for mass gatherings, there was no seating.  As a modern church we have inherited buildings from earlier generations.  From a purely appreciative perspective, it is fantastic to know that there is such a ‘Cloud of Witnesses’ who have gone before us.  Have they always worshipped solely in large spacious buildings, in large crowds, or has there been a different way of gathering together?

  • Victorian

If we have a legacy of physical spaces which force us to look at numbers over quality of relationship…What then of the timetable of fellowship in each week? The Victorians put pews into the large medieval structures, or mimicked them by building huge structures in the medieval image.  That means that it would feel like a waste if our main meeting together didn’t make use of this accommodation.  What about two large gatherings every Sunday?  Evening services effectively developed when Sunday Schools were at their height and churches needed to feed their Sunday School teacher spiritually. Is the way we plan services on a Sunday effective for today’s needs?

  • Big Crowds

When I am invited to join in with my church family I am caught in a conundrum. I know that the Bible exhorts us to ‘not give up meeting together’, but why do our gatherings focus primarily on large groups of people?  We like numbers, in a society where Christianity faces many challenges, sometimes our need to gather in large numbers can feel like a form of defence.  It’s okay if our large Victorian building is full, especially every Sunday.  We feel safe in large groups.  They’re anonymous.  If the presence of people inspires anxiety and panic in me, is it safe for everyone? What would happen if our focus moved from joining together as the whole church body (particularly in large and growing churches) and looked at how well supported our small groups are?  It’s easy to escape the challenges of living in fellowship if you only attend the large, well-attended meetings particularly on Sundays.  It also allows us to absolve our responsibility to be an inclusive church to the Welcome or Leadership Teams.

  • Family Focused

For many with Mental Health issues families are not safe places.  I need you to teach me and model for me what a loving family can be.  Is the emphasis on children, and the importance of family in the way you do Church, or hurting people who have internal wounds which need to be healed?  I found it interesting at our meeting of Roofbreakers how much time was spent discussing the needs of children in church with Learning Difficulties and the practical solutions offered to help them stay in Church.  Many of the solutions were on drawing people into the larger group.  The prospect of only being able to access Church if I am prepared to manage my emotionally responses enough to ‘cope’ with being in groups of 100+, terrifies me so much, most Sundays I either have to put in all my energy to staying there, or I opt out.

Woman Praying in Church

How Can We Do Church?

  • Redefine

Can we redefine church from being the gathering of EVERYONE in our circles on a Sunday to a broader definition?  How often do enjoy being able to share in the Spirit with the struggles of the church worldwide, while we neglect the regular remembrance of those who are housebound, or unable to join with us due to disability of any kind.  For me, the ability of friends in ones, twos and small groups to meet together and support me spiritually is vital to me feeling a part of the church.

Do we need to look again at where the church started?  3000 were suddenly added to the church at Pentecost, where did they all end up meeting?  They didn’t have large buildings, nor did they have the ‘evangelical timetable’.  You know the one: Sunday is Church, Monday is Ladies’ Prayer, Wednesday is Small Groups, Thursday/Friday is Youth.  Where is the idea that Church is ‘where one or two are gathered in my name’, or ‘Whenever they met together’…. If Church is only Sundays (I know and have heard many times, ‘Church is not the buildings but the people’) then is the way we define Church out of sync with what we believe about what Church should be?

  • Break Down the Numbers

What would happen if our focus was more on organising ourselves as mainly meeting as church in smaller groups?  What if our gathering of the ‘whole’ congregation became less regular, on a monthly basis, and the main point of teaching was within smaller groups? What if we sold our buildings off, or changed them to be an essential resource for the community, thereby having a daily presence of the Church in witness to the world?

  • Challenge Stigma

The best way to challenge any prejudice is to introduce the bigot to a real living person with whom they have to interact.  If you want to know how my experience of life and faith differs from yours, ask me.  In smaller groups it is easier to break down barriers.  Again if Church only means the big Sunday Services, it becomes very easy to pat me on the head and distance yourself from what I’ve been banging on about at the front.  Especially, if you misunderstand what Mental Illness is and how it affects people.

  • Relationship

My understanding of the gospel is that relationship is central to it.  In the beginning, God established that ‘it was not good for man to be alone’.

Before we are in relationship with God there is a vacuum.  Emptiness and isolation are common symptoms of a number of complex and more common mental illnesses.  It follows then, that the Church has hope to offer to people with Mental Health issues.  God understands that we were made for relationship.

Is the way we do Church at the minute designed to help us develop effective and satisfying relationships with one another?  I often have conversations with people about how dissatisfied they are with the lack of depth in their Church friendships.  That’s because we fail to apply God’s principles to our Church relationships.  We emphasise our relationship with God, rightly and stress the importance of time spent learning more and more about Him through prayer and Bible Study.

The Church is Christ’s Bride, that means that everyone of us form a part of one body, we are all united to one another in Christ.  Somehow, I think we have decided to accept that this mysterious, spiritual union, somehow negates the necessity to learn more about one another, in fellowship.

How do we do that? By spending time with one another, for me the most effective and safest way to get to know my Church Family is in ones and twos.  When I spend more time with you during the week, then there is a shared understanding when we come together for worship and fellowship as part of the wider family.  If I can see that I am accepted, that there are reliable relationships and true friendships, then it makes the struggle to get to the bigger meetings worth it.  How important, really is relationship and enabling the building of in-depth relationship, in the way we currently do church?

I am not offering any answers. I recognise the inherent challenge in much of what I have said.  However, I hope it helps us to engage with the thorny issues around probably the most isolated disability group in our churches.  Solutions and hope for relationships are welcome.

 

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Three amazing talks at our Network meeting.

On Saturday 30th April we met for the fourth time as the Lancashire Roofbreakers network.  Over 20 of us met, and listened to 3 great talks that prompted a lot of discussion and questions, which was fantastic.

Talk 1 – setting up an additional needs ministry for children and the wider church

A small tent with sensory toys inside

James and Sarah talked to us about how they had planned to put provision in place for children with additional needs in their children’s activities on a Sunday morning. But more than that, they had put together a 3 part plan to develop awareness and engagement from the wider church, with the ultimate aim of getting everyone aware and equipped for including children, young people and adults in their church.

James had put together a training evening for the children’s workers, (which was very similar to the All Inclusive training done by Mark Arnold from Urban Saints) and has rolled up his sleeves to get involved in the Sunday children’s work each week. From there, he and Sarah can implement the advice, support others doing so and speak to parents of children with additional needs.  I was very impressed by the lengths they had gone to in order to listen to children and parents so that what they needed was made available. Sarah showed us some of the resources they were using and gave us chance to look at them through the morning.

Secondly, James and Sarah have attended leaders’ meetings and presented their vision and plan so that the leaders understand, know and can support what they are trying to do.  They have spoken to smaller committees and leadership teams and are hoping to speak to every group in the church.  This is a good approach…communication and having everyone be aware means that what they are trying to do will be understood, supported and hopefully adopted by others.

Finally, James and Sarah shared a wider vision…to reach out to the community. To tell them through the community newsletter what they are doing and what is available at the church for those with additional needs and disabilities.  We all know families and individuals that find church hard, or who came once and felt that they weren’t going to fit in, and they want to make a way for people to come back to church, or come for the first time, feeling that they will be understood and supported with care and acceptance.

Talk 2 – Disability and Jesus

Dave, Bill and Jarvis the Guide dog

We were excited that Dave, Jarvis the guide dog and Bill had travelled over from the North East to join us and grateful that the snow earlier in the week hadn’t stopped them coming.

They came to tell us about how and why Disability and Jesus was set up, what they believe about disability and about their conference in June.

First they talked about how they want to develop a Relational model of disability. Our society looks at disability as a medical (disabled by medical causes) or social (disabled by society excluding or not valuing) issue.  Relational is about that we are all this together – all of us.  As Christians, and human beings we are all in relation with each other and should be journeying together towards our goal of being more like Jesus.

Bill said that we are all made in the image of God.  A God who doesn’t make mistakes. They also spoke about Jesus how exercised an inclusive ministry. He drew in those who were excluded. His ministry was one of incredible inclusion and welcome. They then went on to talk about the difference between healing and cure.  Healing being, coming to terms with your disability and being at peace with who you are with that disability. Cure is taking that disability away. God can do that but the healing is the most important thing.  The important part of healing is peace with God.  It gave way to lots of interesting and important discussion about healing and the wants and hopes of different people.  Disability and Jesus will be giving people an opportunity to look at the Biblical basis of disability, healing and inclusion at their forthcoming conference https://www.eventbrite.co.uk/e/towards-a-theology-of-disability-tickets-24367371464?utm_term=eventurl_text

The practical application of being relational with people with disabilities in church is about stopping people building walls between groups of people. They suggested we ought to be radical about hospitality, inclusion, welcome.  Asking why do we segregate people? How can we all come together and make it accessible for everyone.

We should be doing what Jesus did and going out and finding disabled people, sharing the gospel and bringing them in from where they are.  Making sure that what they encounter is the right ATTITUDE.

It’s not the church building – it’s the welcome and attitude that speaks more than any ramps or accessible toilets.  It goes beyond ACCOMMODATION – providing separate access.  It’s about INCLUSION in what everyone does.

Being community, all flourishing TOGETHER is what God wants.

Talk 3 – Alma Johnson

Alma with her question that says, Is my church a safe place?

Alma began with a startling question…

“Is my church a safe place?”

She then shared some of her own testimony and challenges of having a personality disorder to challenge us all about what made church safe for people like her and other conditions, that meant being in one place with large crowds of people were just too overwhelming and therefore made church unsafe and inaccessible.

Alma herself has written a blog post about what she shared and so I will post it as the next blog so you can read it from her own words.

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.

ELIJAH HIT THE WATER WITH HIS CLOAK9

  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.

cloak

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.

cd page - forgiveness through christ

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!

Inclusion or separate provision?

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I’m writing this from the Hand in Hand Conference in Eastbourne where I’ve come to deliver two sessions about making the Bible accessible for children with learning disabilties and autism in churches.

Someone asked the question, “Do we keep all the children together even if they don’t seem to be accessing what we are doing, or should we set up a special class?”  Someone else asked, “What do we do if a child needs a lower level of teaching and would access what they do in the younger class? Do we keep them with their peers or let them stay down?”

My initial response is to say that inclusion means having the same opportunities as everyone else.  It is better for social inclusion for a child with learning disabilities to be with their peers.  It is also good for the peers of the child with learning disabilties to learn how to build friendship and include those who may see and experience the world differently to them. Relationship is two-way. Relationship is sometimes not easy. Relationship may take some effort.  But relationships that are two-way, where both learn ways of building that friendship can be wonderful.  Children with learning disabilties and with autism need peers that can include them, and adults need to facilitate that.  Especially in the church.

However, sometimes the needs of the child are causing them to be overwhelmed and going into the group can just not be working.  It is them that sometimes taking them out of the group, working with them 1:1 or in a much smaller group can be helpful.  There should always be a plan of how to work towards getting that child back into the group.  Sometimes that means changing how the group is organised and what they do.  In the work I have done with autistic children in churches there are some simple things that have been really effective…

1.  Talk to the parents, ask them what their child likes and what works for them. Find out all the things the child likes.

2. An hours training about what autism/ learning disabilty is for adults involved.  (A similar session aimed at the children can be done as well)  Parents or the child’s teacher might do this for you.

3.  Simple visual structure so that they child knows what is happening and in what order. (A visual timetable)   Include some of their favourite activities and if you can find Bible related versions of these, great.  E.g. Bible jigsaws, the brick Bible Lego pictures.

4.  Look at simplified versions of the main teaching session. Think of one sentence you could focus on.  Use visual pictures to sequence a story.  Let them take home one sentence or Bible verse to focus on.

There are lots more things you can do.  I have put my Eastbourne slides and resource list on my website (www.reachoutasc.com) so do take a look under the “churches” tab.

The aim should be to establish what does work and them move it into the main group – and the peers of the child themselves should be involved in the inclusion.

I have pondered the same question with our adult group too.  Why have we set up a separate group in our church?  One of the reasons is that Sunday Church has been inaccessible for a lot of our group.  For many of the reasons I have discussed on this blog, there are language, sensory, physical and cognitive barriers in the main church service.

Our aim IS to have fully inclusive church, but just as there are midweek groups for ladies, men, the more mature, children’s groups and so on, the Good News Group is a focussed group where people with learning disabilties can come and meet other people like them, they can have teaching and nurturing that is built around their needs and where the pace and communication is tailored totally to being as accessible as it can be.  I can say that the Good News Group is fully church to me too. We work as a congregation, serving one another, finding our gifts and developing them and knowing one another so well that we carry each other’s burdens, pray and praise together.

We run our ‘service’ part of the evening like a regular church service.  We do this because ultimately we want to draw our members into the main church and allow them to feel familiar, comfortable and that they understand some of it.  Our church will need to play its part and be supportive and welcoming.  It is.  Our ministers preach with pictures to illustrate their sermons a lot of the time. This makes Sunday church more accessible for our members.  We have a long way to go but we are not saying “we can’t”.  We might say “We don’t know how?” but I think God can work with that.

The same is with your children with learning disabilties.  Work with them and their families to make them feel safe at church.  Then work to include them.  Then work to disciple them and show them that with God there are no limits. Remember all the other children need to be part of the inclusion process.

If you think you don’t know how, then that’s okay.  Just don’t say “we can’t”.

Remember what I said in my talk… “If children can’t learn the way we teach, then let us teach the way they learn.”

Access issues for the disabled at church

There is a reality in many of our churches – they are just not that physically accessible.  This is the entrance to our church…

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There’s another entrance, fortunately, but to get into the building, those who come in wheelchairs have to park on the church hall car park, come through the graveyard and be pushed up a wooden ramp into the  building. (A good path, lit and smooth has been laid but it’s not much fun on a dark and rainy night…especially one like last week with hailstorms).  Once inside we have only one toilet (it is disabled friendly) and from there in the building is level, we replaced the old pews with chairs a few years ago and so wheelchair users can sit wherever they like.

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You see, the word “CAN’T” is not allowed to be a barrier to people accessing the church.  On a Wednesday meeting at the Good News Group we may have up to nine people in wheelchairs joining us.  The co-ordination and effort put in by the people themselves, the team and the carers runs like a military operation.  I only realised this term as for a short time I seemed to be ‘in charge’ of making sure everyone got OUT of the building and to the right car, taxi or lift at the end of our meeting.  I can’t wait until Bob comes back, he’s much better at the job than me!

Our building is old. It is beautiful, historical and listed.  So we can’t put a ramp in by the front steps, apparently.  We’ve had to find creative ways of meeting legislation for access and making the building accessible to all.  It seems to work…even though we are aware that without all the help from others, our members who use a wheelchair might not get into church at all.

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The problem of old, inaccessible buildings is a a reality for many churches.  We have legislation to comply with but more than that we need to do all we can to make a church easily accessible for all. I’d rather tear down and rebuild a useless building…but that’s not always possible. (we had enough complaints when we took out the pews to put chairs in!)   The alternative is to do church in another place that is accessible.

Saying we “CAN’T” isn’t an option…not because of the law, but because church is a family of all believers, not just those who can get there up the steps…

Face to Face…

This week I’m very excited to have my first ever guest blogger!  Maureen Chapman has been commenting on my posts for some time and this week I challenged her to contribute from her own perspective as a deaf person.

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The challenges faced by the deaf and hard of hearing in both church situations and the wider society!

Believe me, they are many and frustrating too. So where to begin?

Deaf people are human beings, with just one part of their bodies not working properly.

Deaf people are not all the same. I will use mainly my own experiences here. You are face to face with me.

So who am I? In my seventies, ex mission nurse/midwife working in Nepal in the 1960‘s, married and with my husband, ex-hotelier and mini -market owner.

I was born into a deaf family, my father, his brothers, my own brother and his two daughters have all been deaf from birth. We have varying degrees of deafness, mine was slight as a child, and then nosedived when I reached my forties, partly due to Meniere‘s disease which destroys hearing.

Deafness is not just absence of sound, though some are born without any ability to hear and some completely lose any hearing they have for various reasons.

Most deaf folk do hear some sound, but what exactly do they hear? The times people have repeated something to me and then triumphantly said, well you heard that, so you are not deaf!

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Think of a piano, the black and white keys each responsible for giving a particular sound. When all is in tune and played by a pianist, the music is great, moving engaging our emotions with joy and delight.

But now imagine a scenario of a piano where some keys don’t work at all, other keys give reduced sounds and more keys make distorted, out of tune, noises. The result when a pianist tries to play would definitely not be sweet music.

Or perhaps you are familiar with people getting agitated while using a mobile phone and the signal fails. ‘Its breaking up, I can’t hear you are you still there?’

Or perhaps you are familiar with the kind of quiz where you have to identify words, which have no vowels eg c–c- -t- f-s- what does that phrase mean? (catch the fish)

That’s how I hear. People become impatient with me because I am slow to respond, but my brain is working overtime trying to fill in the gaps, make sense of a gobbly-de-gook mish-mash of noises and come up with a sensible answer. When I get it wrong, I am judged as stupid, not suitable, a person the be side-lined. ‘Oh it doesn’t matter,’ they say and move on without me. It hurts.

Deafness is a hidden, invisible disability. Couple that with poor or limited sight and the problems pile up.

Deaf people live with this problem all the time, and the concentration needed to interpret what they are mis-hearing is intense. That’s why many of us have scowly faces! We are concentrating so hard we forget to smile and laugh.

Face to face is essential. We ‘hear’ through lip-reading, watching the body language and the unconscious signals people make as they talk. If I can’t see, I can’t hear.

Phone. The first point of contact with most authorities such as banks, the doctor’s surgery, making appointments etc is by phone. What if you can’t use a phone? I can’t.

A friend of mine, called Joanna, recently gave birth to a baby girl, who needed her first heart operation at the age of 3 weeks. The first four months were spent in hospital. Then the great day, take the baby home! But Joanna is profoundly deaf, and has a cochlear implant. She left hospital with needing to make 9 appointments with hospitals/medical workers in London, Bristol and the West Country where she lives, for the baby. Every appointment needed phone calls. Why could not a ‘helper’ come alongside her and help with such vital phone calls? Why expect her to hear over the phone when she can’t? Would you expect a blind person to read forms and fill them in? Would you expect a paralysed person to walk somewhere?

So face to face is vital for clear communication. Friendship is even better. Understanding is like pure gold.

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About Maureen Chapman

I officially became a Christian at a Billy Graham rally at Wembley Stadium in the 1950’s, but with hindsight, I think I came to faith as a small child.

At the age of 5 I told my teacher I wanted to become a missionary, and I did become one, a nurse/midwife serving 4 years in Nepal in the 1960’s despite my mild deafness as it was then.I passed my language exams in Nepalese.

I have always seen God as my father and friend. He has never let me down. Even now, at my age, he is more real to me every day.

The church I attend now in the Swansea Valley, is very much a mission minded church, with lots of young people and contacts world-wide.

I hope you enjoyed this post from Maureen.  It is a useful reminder to me to think about my friends and family members who have trouble hearing.  Not to be impatient with them and to understand how much being face to face with them will help us both have a great time of communication.  Thank you Maureen x

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