New Parent, Additional Needs, Faith, Lockdown & Additional Needs
By Annie Willmot of Honest Conversation
Before I became a mum I had all these visions of transitioning seamlessly into the role. I imagined myself responding to my son’s gentle cries, settling him into his basket for the night, and just generally glowing as I went about my days, drinking hot cups of tea and enjoying his peaceful gurgling.
In reality, it was a little less smooth than that. And when I say ‘less smooth’, I mean rather than the gentle cruise I had perhaps pictured it was a bit more like trying to cycle down a cobbled street while wearing flip-flops and trying to carry a very full bag of shopping.
You can read all the books (there are a lot), browse all the internet forums, and be given all the advice but ultimately nothing will ever fully prepare you for the moment you’re left alone with your new tiny human. I vividly remember walking across the hospital carpark with our eldest son wondering, ‘Why on earth have they let us take him? No one has checked whether we’re equipped or qualified for this!’
Parenthood is wonderful and it is hard. You will feel both full of joy and completely and utterly exhausted all in the very same moment. And not matter how much you think you’ve prepared yourself, you won’t always have all the answers. Just when you think you’ve sussed one challenge there’s a new one thrown at you. One day something works, the next it doesn’t.
I am someone who always struggled with the unknown. I like to know the right answer. I like to be in control. It’s not always possible to do that with parenting. I have so may unanswered questions everyday:
Why are they crying?
Is he actually scared or does he just not want to go to bed?
Would it have been better if I’d chosen a different nursery/school?
Did I even brush my teeth today?
The weight of unanswerable questions can be paralysing, preventing me from confidently moving forward for fear of not having the right answer.
And I think the thing that makes it even harder is that it looks like everyone else has got all the answers. On social media we scroll through beautiful photos of other mum’s tidy houses and well-presented children. At toddler groups or church we sit amongst friends and hear how their babies are sleeping through or absolutely loving solid food. And older friends and relatives, clearly thinking we’re doing something wrong, tell us how they used do it ‘in their day’.
A few months after I’d had my first baby, I was chatting with a friend who was also a new mum. I asked her, ‘How are you finding it?’ She paused before replying, ‘Can I be honest? I’m not enjoying it.’
She was struggling. She loved her child but was finding being a mum hard and wondered whether it was allowed to feel this way. When she had tried to talk to her health visitor, rather than receive support or understanding, she’d received unhelpful criticism that made her feel judged. She’d been made to feel that she should be loving every moment – or at least acting like it.
When we choose not to pretend that everything is fine but instead say, ‘I have no idea what I’m doing’, or ‘I’m really not having a good day’ it creates space for others to do the same. Our vulnerability allows others to join us in open, honest and vulnerable conversation.
Sometimes we can feel that talking about the hard bits of parenthood some how takes away from the good bits. As if by saying we’re having a bad day that we’re somehow discounting all the good days. But those things can exist together. And it’s good to talk about it all. Every last grubby, sticky and chaotic detail.
We will never have all the answers and there is so much power in acknowledging that. When we do we allow others to do the same and we’re able to build deeper connection and community with one another.
What would it look like today if you chose to be completely and utterly honest about parenthood with your friends, your family, with God?
Annie Willmot is passionate about community and connection. She is mum to two boys, and works as a funeral pastor, writer, speaker and for a local charity. She has written a book about parenting called Cold Cups of Tea and Hiding in the Loo and blogs over at honestconversation.co.uk
By Mark Arnold of The Additional Needs Blogfather
The road to acceptance can be a long one for families of children with additional/special needs or disabilities. Some can reach it more quickly than others, some struggle to get there at all. There are many stops along the way where parents and other family members can get ‘stuck’.
To help us understand a little of what these families can experience, as well as maybe how we can help, here’s a quick guide to ‘the road to acceptance’ written from my own experience as an additional needs parent. Everyone’s experience is different, just as all of our children are different, but perhaps my family’s story will give you enough of an insight into our world to help you to help others…
Pre-diagnosis – worry
Is there something wrong? Those nagging doubts that families start to get; are they just being paranoid? What might be wrong? Is it serious? How do they find out? Who do they ask? Are they really ready to know? Secretly, are they avoiding this? Eventually, they ask, or someone else asks, and they start to find out… and it can often take ages!
In our case, we noticed that James was not developing as fast as his older sister, Phoebe, had. At first, we put it down to boys not always developing at the same speed as girls. Then we had some hearing tests done (which James initially failed spectacularly… until we realised he had an ear infection at the time!) Bit by bit things got ruled out until we finally got a diagnosis.
Make comparisons with other children. Make negative comment about their child's development. Criticise their parenting. Make unqualified 'diagnoses'.
Say encouraging things about what their child can do. If tests or medical appointments are arranged, offer support if appropriate to do so. Be willing to listen to their concerns.
Diagnosis – shock
What does this mean? They may not understand… so many questions… how did this happen? Was this their fault… are they to blame… did they do something wrong? Why did this happen… why them… why not somebody else?
Suddenly they are faced with the loss of the future plans and dreams they had for their child, for their family, for themselves… it all lies in tatters… it can be devastating. They grieve for what is lost.
When we received James’ diagnosis, he was only 2½ years old. It was a hammer blow to us all as we tried to understand what we had just been told; that James is Autistic and has Learning Disability (he has since added Epilepsy to his collection). Looking back now, we realise that we were experiencing grief.
Parents of children with additional/special needs or disabilities will experience this grief too, going through the various stages, maybe getting stuck at one of them (‘denial’ for example). Sometimes, just when they think they have made it to ‘acceptance’, something happens that spins them back to the beginning all over again. It’s like a perverse, never-ending, game of ‘snakes and ladders’.
Say that they must be 'special' parents to receive a 'special' child. Blame the family for their child's disability. Compare their child to someone else's you know. Avoid them.
Offer practical help e.g. meals. Sometimes there are no words, but just being there can be a huge help. Introduce them to other families at church who have children with a similar diagnosis.
Five stages of grief
Denial/isolation – overwhelming emotions, inability to control them, fight or flight instinct kicks in… denial of the situation, blocking it out, hiding from it and hoping it just goes away.
Anger – reality and the pain of the diagnosis breaks through their denial; it can burn deep and cause them to lash out at those trying to help. It can be terribly destructive and can and does cause relationships to fail… 56% of families with a disabled child have major or significant relationship difficulties or breakups.
Bargaining - “If only we had…” trying to rationalise it, trying to regain some control of the helplessness and vulnerability they feel. If they have a faith, they might try doing a deal with God “If you make this go away I’ll…” trying anything to protect themselves from the painful reality.
Depression – sadness and regret about the lost dreams, a deep sense of mourning for what is lost… coupled with a gradual and profound realisation that this isn’t going away.
Acceptance – not a gift received by everyone. It’s not about being brave, but a gradual sense of understanding the emotions that they are going through, of the changes that the diagnosis will bring for them, for their child, for the rest of the family, and a growing desire to move forward and make the best of things. Things will be different, but they can still be OK… They are ready to embrace not what might have been… but what is…
Say they are 'brave', or an 'inspiration' (they won't feel like it). Tell them to move on or 'pull themselves together' (they can't). Try to answer their questions about why God has let their child be disabled (we don't know).
Be there for them. Listen to what they have to say. Pray for/with them for God's presence to be with them. Cry with them and let them know that God cried with them too. Give them information about Care for the Family's befriending service, which links families to others nearby who are on a similar journey, as well as information about the 'Additional Needs Alliance' Facebook group and other similar support networks we might know.
What else can we do?
I have found ‘Welcome to Holland’, the story by Emily Perl Kingsley, a real help and have often passed it on to other families as well as children’s and youth workers. Families have experienced a change of destination; they have ended up somewhere they didn’t expect or initially want to go… how will they respond? How will it affect them?
Will they let this diagnosis be a negative drain on their lives? Stuck at ‘Denial’? ‘Anger’? ‘Bargaining’? ‘Depression’? So many are still there… where are the families that you are alongside? Or will they be able to use this diagnosis as a positive turning point for their lives? Having reached ‘Acceptance’, embracing what is, rather than what might have been, and if so to think about what they are going to do. How will this define them, and how can we support them going forward.
Encourage them that they do not go through this alone; we are with them and God stands with us. As he said to Joshua, he says to us “Be strong and courageous. Do not be afraid or terrified… for the Lord your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6. And as he says to all of us; “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
So, let’s all go on the journey to discover that hope and future together shall we?
Mark Arnold (The Additional Needs Blogfather) is the Additional Needs Ministry Director for Urban Saints’, Co-Founder of the ‘Additional Needs Alliance’, contributor to a range of publications, and dad to James a 17 year-old Autistic, with Epilepsy and Learning Disability.
I wonder what you thought you’d need to be a parent? I recently went to choose a gift for a new baby and was overwhelmed by the vast array of things you can buy for an expectant parent. Whilst many of these are beautiful or useful, they aren’t really what new parents need most.
Most of us learned the hard way. You need patience, coffee and… whatever your child demands of you at a given time.
Our children expect that we’ll have whatever they need, don’t they? Whether that’s a plaster for a scraped knee, a song to lull them to sleep or a repair plan for the toy they’ve just broken. They just assume we’ll know how to be a medic, a sports coach, a tutor, a taxi driver and of course a master negotiator.
Whether we feel confident in those areas or not, bit by bit, we figure it out. We get a bag and fill it with snacks and spare clothes. We google how to do the maths homework so we can help them. We teach them to talk, walk, share and problem-solve. We cheer them on for each tiny bit of progress and cuddle and listen to them when it’s tough. As parents, we learn to coach our children to help them thrive in so many different areas of their life.
But then for some reason, when it gets to the ‘spiritual stuff’, when it gets to God, we’re flummoxed. For most of us with a faith, we’d say we want to give our children the opportunity to get to know God in the way that we do. But, actually helping them to do that can feel difficult. Sometimes we don’t know where to start or what to say. Other times we worry about getting it wrong so end up not doing anything. Many of us feel we are so busy, with the treadmill of the rest of life, that it gets squeezed out.
And so that’s why Parenting for Faith exist. We’re here to resource and equip you to help your kids and teens meet and know God in the midst of the mundane, everyday bits of parenthood. You are in the best position to show your children what a life with God looks like. Not because you have it all figured out, but because you are with them through the ups and downs of a normal day. You also know your child, your family and your situation better than anyone else.
At the heart of our free resources, are five key tools. They give you confidence and skills to help and support your child as they grow in faith. They don’t need any extra time, a craft cupboard or a theology degree, so can you can use them any time, anywhere. In fact, they're perfect for when you're being the medic, sports coach, tutor, taxi driver or negotiator.
To discover all our free resources including the Parenting for Faith course, the key tools, a podcast and hundreds of articles and videos, go to www.parentingforfaith.org
By Anna Hawken, National Parenting for Faith Coordinator
It has been weeks since the country went into lockdown. ‘Normal’ disappeared over night and with it the services needed by many children and their families. Children with additional needs have been affected most in this. Some have been quietly reflective, others frustrated and angry, many questioning the rules and even God. Their much needed routine has gone, and seeing people break the rules is a struggle. But equally, there are some children who are relishing the solitude because the stress of dealing with people and decoding social situations has been taken away.
You may have heard the phrase ‘behaviour is language’. In any child, especially those with additional needs, behaviour is often the language that tells us how they are coping. Many children at the moment describe their feelings as a ‘big sadness’. Experts tell us that this is grief. Sometimes we’re ‘fine’. Other days we want to dissolve into a puddle of tears and loud sobs, or maybe punch a door. This cycle of feelings that makes up grief is probably working around the whole family, but each adult or child, is at a different point in that cycle at any time of the day, which can be interesting!
Our children need to know this grief is normal, and that you and God are there to help. Not a fact to be shoe horned into conversation, but chatted about in those moments that sadness feels like a blanket. Explain your sadness. Show them it’s ok to cry. Stop and pray – nothing long, just a “Thankyou God that you understand how we feel”.
Some children find it enormously unhelpful to keep hearing that ‘this is in God’s plan’. If they don’t have the spiritual and emotional language to sort that through, it can translate as God being vindictive and cruel. They need the assurance that God is good, even in the middle of this pandemic. A useful Bible verse is Psalm 56:8 (NLT) “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book”. It may be difficult for some of our children to understand, but explain it as “God sees your sadness, He’s sad too, He understands and He’s with you”. Talk to your children about being sad and ways we can help each other.
Being “The strong one” all the time is not always helpful. Our children need an example of how to deal well with strong emotions. This may also mean apologising when we have been overly cross with them because we’re struggling too. Create a small space in your home and give it a name “Our safe spot” for example. It could be a low coffee table, a popup tent or blanket fort. Keep it there. This will be a focal point to take the fear, the anxiety and stress – and find hope and peace in the middle of it. But it will also be a place to sit with God, and be safe. Discuss with your children what they would like in that space. Calming things to fiddle with – glitter tubes are good. Maybe have a bubble lamp. Have things to write or draw with. Have a simple prayer activity that you can do more than once – just search for ‘creative prayers’ on line.
Have a ‘thankful jar’. Every time someone finds a good thing – write or draw it on something to put in the jar. It might be food, a game, a socially distanced visit or a zoom call. It might even be that worm they found in the garden. Put in anything to be thankful for, no matter how small, and make it a habit. In that space people can say exactly what they think without any fear. Make sure your children know God doesn’t mind if you shout at Him and tell Him stuff is unfair.
You don’t ‘have’ to give answers, the act of speaking out loud can be helpful on it’s own. But if your children want to silently scream their fear, that is equally helpful. Give space to recognise and name these emotions. Give space to lament. Have a thankful activity, because in the Lament Psalms, David always ended up praising God. When you are in Lament mode it is easier to praise when you a faced with something to be thankful with. So, have bubbles you can burst as you applaud God for His goodness. Use scrabble to spell out your thanks, make them with plasticine, line up toys and say your thanks with each one. Do things around how your child works. If stress makes them line things up – use it to help them cope. And if at that moment no thankful thoughts come to mind, use the thankful jar.
Above all – involve your child in creating what is needed in that space. Let them lead. You may find that what they do is also a comfort to you.
Kay Morgan-Gurr is the Chair of Children Matter, Co-Founder of the Additional Needs Alliance and a member of the Evangelical Alliance Council. You can read more of her work at www.kaymorgangurr.com