Mothering Special Needs

The first post in the Mothering series is an interview with Rachel. Rachel and her husband Andrew have two children and in December 2011 their eldest, Zeke was diagnosed with Autism.

What special needs does Zeke have?

By one year, Zeke wasn't hitting his milestones and continued to fall behind. He began flapping his hands and becoming quite obsessive about toys and objects. At that point alarm bells started to ring as I recognised some of the things he was doing as stereotypically autistic. Our gorgeous little man then went through a painful period of regression; his development went into reverse, he lost eye-contact, his social skills and language. This was probably the darkest period we've been through. 

How did you feel during this season?

The hardest thing was the uncertainty of what was going on and what the future would hold. It was an emotional roller coaster; his behaviour would sway each day. It was hard as a couple to agree, because I was spending more time with children his age and Andrew wasn't. I felt a lot of pressure to provide Zeke with as much input as possible; toddler groups and craft activities. Looking back I wish I hadn't put so much pressure on myself - I don't think it was a lack of "cutting and sticking" that was to blame!

How did you feel towards God?

It was harder than I expected. I would fall apart when praying or engaging with God. While this was going on our little girl was diagnosed with Childhood Epilepsy. We were constantly at appointments and there wasn't much time to pray. To be honest, it sometimes felt like I was rejecting Zeke when I was praying for him to change. Autism is oppressive and awful but it is also something which moulds with your child's personality; their strengths and their weaknesses. So it's hard to know where the lines are between him and it.

When I pray now, I pray for God's kingdom to come in Zeke. I don't believe there will be Autism in Heaven. From early on we could see that this was shaping our character and humility. It is much harder to understand how this could be God's best for our children.

Any verses or worship songs which have been a help?

I found two songs from Bethel hugely helpful, 'Your love never fails' and 'Come to me'. Both songs made me cry and made me look up and cling a little bit more to God. I read 'God on Mute', by Pete Greig, while crying in Starbucks. It helped with the 'Why' questions. And I read Isaiah 61 in a whole new way. I'd never quite seen the 'broken hearted' as 'me' before. Jesus came to bind up the broken hearted and to bring beauty out of the ashes. So He came to bind me up.

Have you been amused or embarrassed by Zeke's antics?

Yes, many times. Last year he insisted on carrying a tin of Thomas the Tank Engine spaghetti hoops everywhere he went. He also has strong feelings about songs. If the church band opened with anything non-Matt Redman he would cover his ears and scream "different song". Whereas now he's in a Lou Fellingham stage. We're entering a nakedness phase which I'm sure will be interesting, particularly as he's still in nappies! The genuinely hard stuff in parenting him, is that he doesn't look any different. He can use some language but he doesn't understand lots and he can scream/shout/hit out in public and I can't stop to tell everyone why it's happening so I just have to deal with the stares.

How have your family had to adapt/make sacrifices?

We've had to adapt our whole lives. We are routined and planned. We have to limit the amount of 'people time' that Zeke has. I've given up work. We go to bed very early as Zeke starts the day very early, and we're not nearly as hospitable in the daytime as we'd like to be. But there are also joys like swimming, walks, endless trampolining and lots of laughing. It's sad to miss 'normal' things like birthday parties, nativities and watching him make friends. Having said this Zeke continually surprises us, and when he does, it feels like a wonderful bonus as I don't take it for granted any more.

What are the pains & joys of being Zeke's mum?

A friend of mine has a child with Down's Syndrome. She has been a huge blessing to me. She described diagnosis like a bereavement; you feel a tremendous sense of loss no matter how much you love and accept your child. But the pain of what you've lost does begin to ease and the joy comes with the steps they make that you never thought they would; each a gift of grace.

What have you learnt?

We've both been incredibly broken by the past year's challenges. We identify more with parents going through challenges with their kids. I think we could have been quite smug parents and even looked down on others, whereas we are now completely convinced that we can't do this without God's help.

What are your fears and hopes for Zeke?

We want our children to develop to a point where they can know God for themselves. Everything after that is a bonus. The future is very uncertain. We've been told that Zeke will need much support and is unlikely to live independently, but it is also so difficult to know the development of autistic children. I'm a bit of a planner so God is teaching me a lot, and just as I think I've got Zeke sussed, there's a new hurdle. Long-term we would love to be able to be an encouragement to others parents and testify that God is good and very very faithful even in pain, confusion and the challenges of mothering a child with special needs.

How do you feel towards Zeke?

Zeke is one of the most loved little boys that's ever walked the earth, not just by us but also by family, friends and support workers. We are enormously proud of him and are very grateful that he was ever entrusted to us.

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners. Isaiah 61v1

Mothering...

I have been thinking about mothers; I am one. I have one, and fifteen years ago, I got myself one of those 'in-law' ones. I have also been 'mothered' by older women (the ones that bake you a cake when you have a baby, or put your washing away when you're heavily pregnant). From my own mother, I learnt how to be hospitable and go the extra mile for people, how to bake without measurements and live without order, how to laugh a lot and find a bargain. From my mother in law, I have learnt how to be patient and diligent, and to see the benefit of a little order in the chaos, and how to give my oldest boys individual time. From those mother-hen types, I have learnt to offer help, even when a mum says she's coping and to look out for young mums. And from being a mother, well...I'm still learning. I have learnt that wet wipes really can clean anything, that you have to say sorry often, that it's best if you try not to laugh during discipline, that you have to try not to worry what others think of you or your kids, that you need to ask for help and advice, and that you need to hand over all the 'Mother Guilt' to the one who loves us with His perfect Grace. 

As far as I can tell, some aspects of mothering are the same whether you're mothering girls or mothering boys. It is one of those relentless but joyful tasks. It's full of tears and laughter. Full of the unknown, and the same old things. Full of teaching, but also learning. Full of change yet also steadfastness. Full of worries and expectations. How to improvise on the spot; bringing Biblical teaching into this moment? How do I make a jet pack out of a Pringles tub? How do I know which size jelly mould is the right sized sick bucket, for which child?

To mother, is to be the fount of all knowledge! At any time of the day, and especially at bedtime, the questions they have see you reaching for Google for many answers; Why do bats sleep upside down? How fast is a shark? And your stored up Bible knowledge, is required for ongoing wisdom. Some days, mothering is just full of nakedness, (their's) poo (which you get to deal with), sick (which you hope makes it into the Tupperware or toilet), Calpol (or supermarket cheaper versions) and cheesestrings (especially when they're on offer).

I think that most mothers can relate to one another, despite their different situations and circumstances. Being a mum is a full time job, whether they have a second job or not, whether they have one child or a few more. On some levels, one mother's plight can be totally different to another's. Mothers can, and should definitely learn from one another, but not compare themselves Mothers should be other mothers' greatest encouragers. So here is my introduction to a series on 'Mothering'. I have interviewed different mothers to find out what mothering is like for them and see what we can learn from their journeys. The common ground I have found, is that regardless of our mothering differences, God remains the same. He remains faithful, loving and full of grace no matter what kind of mother we are. And He is willing to help us become mothers who glorify Him.

"Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning, great is your faithfulness." Lamentations 2:22-23

I hope and pray that you enjoy the series...

Mothering Special Needs
Mothering and Mourning
Mothering at Christmas
Mothering Twins 
Mothering Many
Mothering & Working
Mothering Someone Else's
Mothering with Post Natal Depression
Mothering Young
Mothering Girls
Mothering an Empty Nest
Mothering in Fear
Mothering Alone
Mothering the Prodigal Son
Mothering Mum
Mothering Across Cultures
Mothering Without Mum
Mothering Through Loss
Mothering Anorexia Part One
Mothering Anorexia Part Two (a daughter's story)
Mothering Autism

A Little Nudge

Last week and the week before, I was being a bit snappy at the boys. The mother tone was a little on the harsh side. Sure, I can hide behind the 'new baby', 'sleep deprivation' and 'hormone overload' excuses but there's a verse in Matthew which says, "What comes out of the mouth proceeds from the heart, and this defiles a person". So, I'm not sure I can hide behind those excuses really, seeing as this verse says that what comes out of my mouth is a result of what my heart is looking like. My heart wasn't really looking very kind and gentle, but instead a bit rough round the edges.

As a result of this, I decided to dwell on a different verse, one from Galations; "Let your gentleness be known to everyone. The Lord is at hand..." I sometimes wish there was a bit added to this verse so it would read, 'Let your gentleness be known to everyone, except the children you live with, cos that's just impossible'. But it doesn't say that does it? It says everyone, and there isn't a clause for certain little people, which must mean even the little people in my house. It must even mean when I'm tired, even when there is a new baby, and even when the little people don't deserve it.

I made the brave (or maybe stupid decision) to ask my boys to keep me accountable on this verse. I told them that I felt I was being snappy with them and that I was struggling to show them gentleness, which they totally agreed with. I told them about the gentleness verse and said that with God's help, I was going to try and put that verse into action. I told them there was a big difference between knowing a verse, and living a verse. (I also went for a brief explanation that this did not mean I wouldn't be disciplining them, but it meant that I was going to aim to do it right) Gulp!
I asked the boys to 'live a verse' too. A couple of the boys had already been working on particular verses, so I chose two verses for the other boys.

It was a great chat, with different levels of understanding. I think it made us all see that whatever we are doing or feeling, there is a verse that we can choose to live by. I needed the reminder, and I wanted them again to see the wealth of what the Bible actually holds for us. We've stuck it on the bathroom door to nudge us.

We have done it this week, giving each other a little nudge to 'live our verse'. I have of course, had to say sorry for telling one of them off, when they tried to point out my lack of gentleness. I tried to justify my actions, but they were right. I have been able to remind them of their verse too, hopefully without legalism, but in grace and love instead. After all, the main essence of what the Bible holds for us is indeed God's love and Grace. He wants us to live out all the verses. But He wants us to know His love and Grace in it all. I'm reminded too that His gentleness is always evident to everyone, even when His word is nudging us!

A Daughter

 So we're in that hazy, blurry season of newborn life. Everything is a bit foggy due to lack of sleep, a whirlwind of change and everyone's emotions running high. Our little pink bundle arrived in the early hours of Sunday morning. She is lacking in the willy department, which is definitely a new one for this house! She is of course adorable and scrummy, and she has many pink & flowery, cute & frilly outfits to be dressed up in. We do indeed have a daughter.

The boys love her already. They come into our room in the morning, and pretty much queue up for their cuddles and kisses with her. One of them sings Rita Ora's R.I.P to her. One of them just snuggles her. One of them rubs her head in the way you just don't really do with a newborn, and one of them laughs at her bottom burps and brings her hammers and torches to play with. She is a much loved little daughter and sister.

I was thinking about how loved she is while tending to her last night. It was one of those nights where sleep was a far away dream from the actual reality. I really wanted to sleep, and everything was as it should be to attain sleep; comfy new Christmas pyjamas were on, separate duvet from the husband was ready (a must in this season), the house was quiet, the lights were off, the pillows were plumped, and the moon was dimly glowing but there were these noises from a little one who hadn't read the memo on how to act at nighttime. First there was the cute cooing noises, then the snuffly hedgehog noises, then the 'am I choking...you should check on me' noises, then the sound of a head turning from side to side, 'rooting for a boob' type noises, and then a noise which the boys would have been proud of from their little sister, as her nappy was filled. She then repeated this whole range of noises once more as she was clean, fed and settled back into her Moses Basket.

As the clock on my phone reached higher numbers, and as the the moon started to make it's descent, I realised that we had indeed spent most of the night together in one way or another. I think I had dozed off, slouched with my head on the side of her straw basket and my hand protectively on her tummy. I was zombiefied and achey, reacting on auto pilot and definitely frayed but yet I looked at this beautiful little one and continued to have such love for her.


I realised in a sightly cloudy moment that that's how God looks at me. So far, my daughter hasn't sinned against me, but she has thrown in some difficulties, some pain, some sleep deprivation and some bad smells, but she is my daughter and I simply love her very dearly. What I have thrown at my Heavenly Father has been far worse; sin, disobedience, taking Him for granted, the 'It's not fair' syndrome, lack of time and attention and so much more, and yet I am still His daughter and He still loves me very dearly. He still watches over me at night, with His hand protectively over me. And this truth mixed with His wonderful strength and grace will carry me through this new tired, pink season.

When a woman is giving birth, she has sorrow because her hour has come, but when she has delivered the baby, she no longer remembers the anguish, for joy that a human being has been born into the world. 

John 16:21

Behold, children are a heritage from the LORD, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate. Psalm 127:3-5

Another Pink Toothbrush

I spent yesterday morning panicking and giggling with the husband. With one week to go 'til our due date, we sorted out the new baby's nursery. We went through the clothes that we have been given for the new arrival. According to the scan, this little bundle will be a pink one, which is slightly different to the numerous blue bundles we have brought home from the hospital over the years!

We sat and went through many pink, and fluffy, and floral, and pretty and frilly items of clothing. And we realised just how out of our comfort zone we are. With baby boys, you put a nappy on them, a vest, a top and trousers. Job done! But with girls, there seems to be a variety of options; You put a nappy on them, a vest (maybe one with frills on the shoulder, depending on what else they will wear), then you have to decide on tights or leggings or socks, before deciding on a dress or a top or a long top which could double as a dress, and then at this point you may put frilly knickers on the baby, which no one can see, but they match the vest, or the socks depending on what you previously decided. Then you put a cardigan on them, and the buttons match the unseen frills of the knickers, along with the button on the cute shoes! Simple, I guess an hour or so later she's dressed, until she throws up, and then you start the whole pretty process again?!

The husband has realised that he wont know what's going on with a little girl, whereas he looks at the boys and totally gets them (most of the time). He knows when they're being warriors, being egotistic, dealing with pride, being the clown, being a leader, taking a risk, rising to the challenge, stretching themselves, manning up etc. I look at them and see danger. I see bundles and wrestling and toilet humour. In our house, we do Lego, and weapons, and Nerf wars. We collect spiders and snails. We tie stuff up with string. We laugh at willies. We imagine what super hero powers we could have. We jump out at each other. We slide down hills on our muddy bottoms. We climb crazy high trees in the wind and we don't change our socks until mummy is gagging on the smell of them.

What a whole new world we are about to enter. A world of the unknown. A world of pink. A world of leggings and frills. A world of Barbies and My Little Ponies. A world of Flower Fairies and Ballet. A world of drama and emotion. But it won't be a world where we will just have to go for it and hope it all works out for the best, no not at all. It will continue to be a world where we will have to trust God with our parenting, like we always have done. We will not panic, we will trust that God knew exactly what He was doing when He sent us on this pink adventure. We will continue to thank Him for the arrows He has given us to send out and we will embrace the addition of another pink toothbrush in the house. Here we go.....

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4v6

 "Trust in the Lord with all your heart and lean not on your own understanding." Proverbs 3v5

Keep Calm and Text Me

Last week, I was feeling just a bit fed up. I text the word "Poo" to a friend. She asked for an explanation, and for once it wasn't about poo in the literal sense. So I text her the following moans and groans.... "Because being pregnant and a mum, is all too hard and I can't do it and I feel like poo and my husband is tired and he's probably fed up serving me and dealing with me and I'm hosting small group tonight and a new lady is coming who needs to be welcomed, and I'm fed up and sad and angry and pathetic! Hence the poo..."

Like all good 'iron sharpening' friends, she asked me what I was planning to do about it all. I told her I had text her; that was my plan. So she sent me a link to a worship song. So annoying, I wanted a bit more 'poor you, life is hard for you' type stuff....But I clicked on the link and listened to the first verse (with a slightly stubborn heart); "God I look to you, I wont be overwhelmed. Give me vision to see things like you do. God I look to you, You're where my help comes from. Give me wisdom; you know just what to do".

And then I text the following to God....

"Oh God my Father. I am sorry for not looking to you, not coming to you. Please forgive me. And please 'Give me Vision, to see things like you do'. It is hard, I know I don't have to pretend it's not but it's not impossible. I know I can do ALL things through Christ who strengthens me.  All things, well that must mean parenting, because your word also says that You will tend your flock like a shepherd; You will gather the lambs in your arms.You will carry them in your bosom,and gently lead those that are with young. And I have young so you are gently leading me and carrying me close. What safer place is there?

And I know you're carrying this pregnancy, because you yourself are knitting her together in my womb, in the secret place. Seeing things the way you do is so much better than seeing things the way I do.

And to be honest, today I have felt a bit like poo but I seem to remember that it's not about how I feel, but who I am. (I may have even written a post on it recently - 'Who are Ya?')
I am righteous because of what Jesus has done and the righteous can draw near to you. And I am loved and accepted and an heir to your kingdom and an adopted child. And it is much better for me to dwell on this than dwell on how I feel. Help me to take my thoughts captive.

And my husband is genuinely tired. He may not actually be tired of serving me, I expect that's just my filter reading it that way. But even if he is, you're not tired of me. You're not even physically tired; you don't rest or sleep. You're a constant in my life. And you served me to the point of dying for me. Your love for me, and your patience never weakens. You are consistent. You will always have more for me than he will.

And yes I'm hosting small group, but you love hospitality! And yes there's a new lady coming, so I need to welcome her. But what a great opportunity to welcome her into the church family and feed her. You love when people feel welcomed in and taken care of. You even say in your word that when we do it for the least of people, we are doing it for you.
And after all, you welcomed me into your family when my life was a mess!

And so I may still feel a bit fed up with it all, even angry and sad and pathetic, but having the vision to see things as you do has lifted my soul and I thank you and praise you for that. Thank you for gathering me in the midst of my tantrum and for loving me and lifting me. Thank you that even when I make it all about me, your grace says that it's really not. It's all about you and you do reign even when it's poo. I love you Lord love Emma"

 Send...

Muddy Bottoms

I was a little worn out and emotional as I left church last week. We go to church at Brighton Racecourse, which is on the top of a big hill, and the boys were asking me if we could go down the hill, rather than walk around it.

At eight months pregnant, and worn out, I could definitely see the benefit of going round the steep hill. But I also knew that the walk would be much longer and more tiring, so I was quite torn and didn't quite know what answer to give the boys. Eventually they convinced me that they would help me and help the younger two, and with a few more "please mums", I gave in.

We got to the top of the hill and I explained the deal. I said that the oldest had to go first, followed by and helping the five year old. And that the second oldest had to go next, helping the three year old, and I would somehow bring up the rear. The boys were very reassuring and said they would take it slow for me and help me.

So I followed my little clan down the hill, a bit nervously and trying to convince myself that it was a better option than going the long way round. We got to a very steep part of the hill and my son explained to me that it was better if I slid down on my bottom for this bit. I said that I thought it was better for me to walk. Again he encouraged me to follow his lead in sitting and sliding. He said it would be easier and a lot more fun. I firmly stated that walking was easier for me. I took a couple of slippery steps, and then watched my four little men sliding their way down the hill.

I got down on my bottom and slid, and it was so much easier and a lot more fun than teetering down that hill.

When we got to the end of our descent, all giggles and muddy bottoms, I explained to my son that I had been reluctant to listen to his advice, and thought I knew better because I was older and he was just a boy. I explained that actually he did know what was best for me and that I definitely had more fun his way. I told him that there was a verse in the bible which explained that just because he was young, didn't mean people shouldn't listen to what he has to say. And that he can be an example, even to his mum.

"Don't let anyone look down on you because you are young, but set an example for the believers in speech, in conduct, in love, in faith and in purity."
1 Timothy 4:12