A world without Down’s syndrome?

Sally Phillips is best known for her roles as Tilly in Miranda, Shazzer in Bridget Jones and for co-creating and writing the award-winning sitcom Smack The Pony. She and her husband Andrew have three sons and Olly, their eldest (aged 11) has Down’s syndrome. In the BBC documentary, Sally shares her own personal experiences and speaks to experts in the Down's syndrome community, as well as some of the world's top scientists.

Sally highlights the fact that Denmark has a national health goal of being ‘Downs-free by 2020’ and Iceland already has no babies with Down Syndrome being born. Through making the documentary Sally discovered that many NHS Trusts in the UK give false statistics around life expectancy, quality of life and achievements of people with Down syndrome, and they also heard many stories of women being pressurised to terminate (in the UK 90% of women who receive a positive diagnosis of Down Syndrome in pregnancy terminate).

In the documentary, Sally stresses that Olly’s Down syndrome is more of a comedy than a tragedy – he keeps her grounded (“it’s hard to get too serious about life when you’re chasing a child in a Leo Sayer wig and supersize sunglasses down the street in your pyjamas!”). She is also keen to expose our obsession with perfection, reminding viewers that it is our weaknesses and differences that make us who we are. She suggests that one of the greatest gifts people with Down's syndrome have for the rest of us is the power to lead us back into our own humanity.

Ruth Jackson spoke to Sally about the blessing of Down’s syndrome children, church, and parenting a child with additional needs

RJ: How did you feel when Olly was diagnosed?

SP: I think I took it quite well. I remember thinking, ‘It’s a fair cop, guv.’ My life had gone so smoothly up until that point, it was about time there was a hiccup! And Down’s syndrome? There are so many worse things. But as time went on, I started to feel let down by God. I had prayed for my baby to be healthy and God had said no. Why on Earth would he do that? We felt let down by church too at that time so I parked my faith for a while. But it didn’t make anything better, so reluctantly, angrily, I started turning up again. I had absorbed the idea that God was a kind of mafia boss: hang out with him and he would protect you from bad things. It turns out, that the gospel says something rather different. Suffering and love are the best-known paths to get to God, and my life with Olly has given me more of both, so I have had lots of help on my spiritual way. He is indeed a mitzvah: a very specific type of blessing.

RJ: What are some of the ways that Olly’s faith has encouraged your own?

SP: Olly sees and talks to Jesus. It took me a while to believe that this is what was happening but I now sincerely believe at least that he believes Jesus appears in his bedroom and occasionally his classroom to cheer him on. What a God!

We believe in a God who uses the weak to shame the strong, who promises to frustrate ‘the intelligence of the intelligent’, who comes in where there is room, where people are humble enough to know they need him and my experience thus far as Olly’s mum leads me to believe that Olly has a particularly strong and deep faith. He loves much and forgives quickly. Jesus tells him he loves him and asks him not to smack his brothers.

If you have these children (and adults) in your church, I believe that they are able to bring us closer to the truths that really matter than any number of courses or ‘inspiring’ books.

Fr. Richard Rohr writes that God has a preference for the poor, the fatherless and the weak; he says that Jesus is always to be found at the outsides and the edges of society. Many people with a disability cannot work and live in poverty: disabled people have been hit six times harder by recent government cuts than any other group. Many do not have access to a suitable education or even the same right to life as nondisabled people. Late terminations are permitted for even relatively minor disabilities up to 40 weeks (NHS guidelines consider a baby full-term at 37 weeks) and we invest more money in screening programmes and new technologies to more accurately identify disabled foetuses for termination than we do on programmes to include disabled people better in society. Let’s be different.

I’m biased, of course, but I genuinely believe that in the topsy-turvy topology of the kingdom of God, we miss very important fruits, messages and blessings if we see these children just as challenging.

RJ: What are some of Olly’s favourite things about church?

SP: Olly loves worship, prayer and cakes after church. He loves his friends and being allowed to play on the iPad at the beginning of the service. He is also very keen on icing biscuits, playing with cars and building towers.

RJ: I saw a two year old girl with Down’s syndrome hug a notoriously cranky man in church and completely melt his heart. How can we appreciate SEN children for the blessing that they are?

SP: I’ve lost count of how many times that kind of thing has happened to us with Olly. I think churches are missing a trick by not drawing on the support these kids can offer the church. Many are very spiritual and have much to teach us about forgiveness, love, gratitude and who God is. Kids with SEN are often benevolently tolerated but not thought of as the ‘mitzvah’: the specific and rich blessing that I believe they are. Really listen when they speak and try to understand. It may be a blessing for you. Why not get them praying for the church?

RJ: How can children’s workers support parents of SEN children?

SP: Let’s be honest here, most parents really struggle at some time or other and special-needs families have an awful lot more on their plate than most. I have been most hurt about Olly in church. Church is where you break bread with people who still call children with Down’s syndrome ‘mongols’ or, on one occasion, ‘mongrels.’ It’s where people are most likely to ask me ‘if something can’t be DONE’ about Olly, where people unthinkingly ask if I knew he had Down’s syndrome when I was pregnant. (Are they asking why I didn’t terminate, or if I wish I had known so I could have terminated?).

Olly has a particularly strong and deep faith

Please pray for us. Relationships can get very strained; it’s harder and harder to get adequate support for your child and families will be under particular pressure at diagnosis, statementing (getting a statement of educational needs), family breakdown, hospital admissions and so on. Showing love to the siblings too is gratefully appreciated as the whole family is under strain at those times.

Release parents – if the families of SEN children end up taking the Sunday School all the time, they will eventually decide it’s easier to stay at home.

RJ: In churches there are often have limited resources and manpower to serve children with special educational needs (SEN). Do you have any advice for churches and children’s workers?

SP: Good will is a good start but it’s often not enough. Generally, children’s workers are not prepared enough and the activities not differentiated enough so that kids with SEN can access them. There’s also a lack of volunteers. In school, Olly has one-to-one support. In church, he doesn’t, even though he still needs it. In school, his lessons are adapted, in church, he has to do the same as the others. If you prepare the lesson with multi-sensory options, all of the children will benefit, as there are many typically developing kids who prefer different ways of learning.

Incidentally, more traditional forms of church are much easier for SEN adults to access than ‘as the Spirit leads’ churches. The ritual and physicalisation of worship and prayer, the prayer book that they can follow, the same pattern every week, the weekly Eucharist etc are very helpful for people whose primary mode of communication may not be verbal.

Find out the profile of the kids you have got and be as prepared as you can: look up websites for specific disabilities. New Wine’s ‘Our Place’ is completely wonderful. If you can get advice from the leaders there, you will be ahead of the game. Perhaps volunteer there one year so that you can pick up some tips?

Find a special role for your child with SEN, be it drinks pourer, biscuit monitor, the person who opens and closes the prayer time or gets out the toy cars... whatever they enjoy.

Children’s groups often involve lots of sitting down and colouring and reading and writing. Most of the instructions are given to the kids verbally with no attempt to cater to the child’s strengths and often without looking for a specific volunteer for that child. Why not ask parents to fill out a detailed form including the child’s favourite things?

Children with learning needs such as Down’s syndrome and autism really benefit from additional clues as to what is going on because auditory processing may be poor.

You may find alternative communication systems helpful when engaging with non-verbal kids such as picture exchange communication system (PECS), Makaton signing (courses are available from local councils and easy to view on CBeebies’, Something special or through the charity Singing hands).

Another tip for non-verbal kids (which works equally well with toddlers) is mirroring. Copy them as exactly as you can and wait for a response. (think OWL: observe, wait, listen). Some children need a really, really long time to formulate their answers. At one stage, I was advised to wait for 30 seconds after speaking to let Olly get a reply out. That is such a long time! It’s not always possible, but if in doubt, wait.

Have a routine for your sessions and stick to it, use a visual timetable and some multi-sensory activities (soundscapes, acting out parts of the Bible) as well as a chill-out zone (you could perhaps use a small tent with headphones and light-up balls or invest in a sensory tent – this calms Olly down but my second child goes wild in one!).

Create a prayer area: decorate a chair with muslin and glitter, use fairy lights.

Use Godly Play, have a sandbox, make a cereal box tent, nativity set, ark and so on.

Put together a fiddle box, (with fiddle toys or plasticine) or a bag of different textures (sheepskin, sacking, velvet, sandpaper). Olly listens much better with a ball of Blu-Tack in his hands.

Listen to each child. Listening to someone properly is so close to loving them that many people can’t tell the difference. Walk with them. It may require more effort but you will get help from God and all kinds of rewards.

Identify what noise levels the children can handle; you might need noise-cancelling headphones if they are sensitive to sound, particularly during worship.

Create a circle of friends – allocate a couple of kids to the child to keep a special eye on them and be their friend. Ask them to pray for each other and keep a diary of God’s answers.

Sally suggested some helpful websites and organisations: