After about seven months of waiting lists and assessments Mikey has officially been diagnosed with autistic spectrum disorder (ASD).

It makes sense of lots of the mysteries. Little Mikey has been finding the world hard and confusing for a long time – hopefully this is a step towards helping it make more sense.

A diagnosis validates us too. We’ve been finding it hard. I’m relieved there’s a reason for that.

And yet, nothing changes. Mikey is the same little boy and the diagnosis just explains something that was there all along. We’re on the same journey but the map is now a little more detailed.

Part of me is sad. Sad that Mikey has so many challenges. I’m trying to quiet the voices that tell me if only I had done more and worked harder things would be different.

Lots of me is proud of Mikey and hopeful for greater support and strategies to help him and the rest of our family thrive.

I hope you’ll bear with me as I work out what this means for us. And I know so many of you will be cheering on our brilliant boy as he continues to amaze us and fill us with joy.

Highlights include:

Extra track for the train set. Amazing.

Cake (no frosting for Mikey). Although not as delicious as I’d hoped!

A disco ball for the bath.

Officially the best bath toy ever. (Dave’s favourite joke today: “happy bathday Mikey”!!!)

We’re never quite sure if what we plan for Mikey will work out OK but today seems to have been given a thumbs up! Phew.

We’re always after ideas for gifts for Mikey so if you have any ideas do let me know in the comments!

Six years ago today we met our social worker for the first time and Mikey’s lovely birth parents met him. We’re so grateful to them. We know they’ll have been thinking of him and sending their love all day long. xxx

1. You thank God that it’s a UPS delivery man rather than a big lorry with TENA written across it. Because people don’t associate TENA with kids’ nappies as much as feminine incontinence aids. Right?
2. You open those packages and have at least one day of fun.

The packs of nappies make fabulous building bricks or wobbly/slippy roads for the kids to try to walk across without breaking any bones.

But the boxes are great too…

But then…

I was whispering “ohmygosh. Wow. A circle. A face!!”

And he continued…

Aaaaand, he did it over and again!!!

I honestly can’t get over how many incredible feats of developmental awesomeness this one picture involved:

• Signing clearly.
• Understanding that a symbol (the picture) represents something real (a man).
• Thinking about various features of a face and including them – check out the EARS!
• Saying “hair”.
• Using a tool to make a mark.
• Translating what was in his mind to something so recognisable.

Truthfully, this is one of the most magnificent things I have ever seen. I am so proud of him. So in awe of his determination and his ability to surprise me just when I think he’s slowed right down!

Today, Mikey is my hero.

The sketcher from the Early Learning Centre was a gift from Mikey’s birth parents a few years ago. It’s one of the very best toys we’ve got. I highly recommend it for durability and useability. When it breaks we’ll get another one immediately.

I am the Duchess of Doubt. Much of the time I live with a whisper which, almost too quietly to hear, queries every certainty. It’s the whisper that says, “you know, this is probably all complete rubbish”. Somehow doubt and assurance cohabit in my mind.

But doubt is a downer. There are times that I feel pretty sad and worn low because of the emotional effect of doubt.

As I’ve said previously, one of my hopes for the year is to address some of the questions that most regularly cause me to doubt. My hope is that I’ll equip myself with a few choice words to say in reply to that nagging voice of uncertainty.

In the process of looking for good answers I’ve come across a few things I’ve found useful on the topic of doubt.

• Thanks to my friend Rich for suggesting this video of Gary Habermas talking about different types of doubt. I love what he says about various people in the Bible who doubted. It’s 29 minutes long, which sounds like ages but with a cup of tea in hand, listening to the great and encouraging stuff he says, the time flies.
• This very recent article on the gospel coalition blog is pitched at helping others who doubt.
• I really appreciate the tremendous amounts of good and accessible resources on the Fervr site. They have just begun a little series on doubt and you can read the first one here.
• In the Autumn I went to a good seminar on ‘glorifying God in the midst of doubt’ by Jo McKenzie – you can find it and listen here.

I’m not going to go in to loads of detail about the substance of my doubts or attempt to blog my way through my answers, because sometimes other people’s questions can be unhelpful or distracting. But I did want to acknowledge my doubt rather than embarrasedly hide it. It seems that half the battle of doubt is feeling like the only one and therefore feeling like a fraud amongst all the non-doubters. I am confident I am a Christian I think Jesus is excellent – facing my doubt has given me a boost after feeling worried and ground down.

I don’t love doubting. In fact, I’d prefer it to go away forever. But with some good new resources out there and what seems to be a refreshing new openness in addressing the issue, I feel like if ever there was a good time to doubt, it’s now!

Dan can’t stop drawing rainbows. There is hope everywhere I turn.

Growing Faith have kindly included a post from me about how we try to have fun while we teach our children about Jesus. You can read it here. I talk about our journey from enforcing an earnest but ineffective Bible time to using play as a way to share Jesus.

I really rate the site – there’s brilliant stuff for helping parents with children of all ages. I’ve found the articles to be thought-provoking and very encouraging. You can also find them on Facebook here – definitely worth a ‘like’!

We grew up loving clothkits – we had a few items of extra pretty clothes that mum made using a cut-out-and-sew kit from a company based in Oxford. Ruth and Hannah had clothkits dolls too, which wore mini versions of the children’s cloths.

So when I was thinking about getting Jemima a doll for Christmas I decided to ask for one of the classic clothkits dolls that have recently been re-produced. My sisters gave her the kit and I got sewing!

I’m not much of a seamstress so I’m glad the instructions were clear and explained bits that more experienced people might find obvious.

I decided to hand-sew the doll and her dress – mainly to give my hands something to do in the evenings that didn’t involve lifting chocolate to my mouth!

The kit provides you with everything except for pins, scissors and needles. So you just cut out from the printed fabric and sew it up.

The doll was pretty straightforward but the dress included techniques I had never tried – if I were working on a bigger scale I might have been put off by the challenge. But I can now do some gathering and shirring – not perfectly, but well enough for my standards!

There are pieces I haven’t made yet – bloomers, a jacket and a cherry basket. I’ve decided to count these as a separate project and use them as a chance to get more confident on a sewing machine. I’ll work on them later in the year.

Dave thinks she’s a bit weird-looking but nostalgia wins for me and I love her! Each of the kids have played with her and Jemima seems pleased!

My slight disappointment now is that I wish clothkits were making children’s clothes as pretty as they used to. I think the stuff they have is all right, but probably not lovely enough to justify the cost and the work. Bring back the retro fabric and the puffy sleeves!

I’d like to try sewing more toys, so if anyone has any links to good patterns or pinterest boards, let me know!

Next project – a knitted jumper which I have had to unravel because my gauge was wrong. My temptation is to give up (and swear and cry), but my plan to finish what I start (and a pep-talk from mum) is forcing me to persist.

What is it?
This is a book celebrating disability and difference – appreciating God’s control, intention and goodness in all of it.

What do you get?
Written by Krista Horning, who has Apert syndrome, each page shares a big and beautiful picture and is accompanied by a sentence and a Bible verse. The pictures show children playing, sitting, interacting with siblings, friends and parents. Some of the children have noticeable disabilities (like Down’s Syndrome or are pictured using a wheelchair). The text includes simple statements like, “God made me”, “God made me just the way I am”.

The book includes short sections written by Krista’s Mother and her pastor and has questions for discussion aimed at thinking more about disability plus a basic description of the Bible’s message by John Piper.

Who is it for?
I read this as a mother who happens to have a child with a disability. I found it moving and lovely. There is a gorgeous picture of a child sitting on a jetty with his dad and at the edge of the photo you see his wheelchair. The accompanying text says, “Someday I will enjoy him (God) forever in heaven”. In the new creation Mikey won’t need his wheelchair, his Piedro boots, his nappies or Signalong. I can’t tell you what a satisfying and motivating thought that is!

I showed the book to Mikey, but because it doesn’t have ambulances (“numulance”) in it he wasn’t interested! But sharing it with Dan was a very special experience.

Dan is growing more and more aware of the differences between him and Mikey and it’s raising questions and worries in his mind. Last week he prayed that Dave and I would be alive to look after Mikey when he is a grown up because he needs more help.  There is a lot going on in his amazing mind and reading this book together was a lovely chance to allow some of those things to be raised and chatted about.

He was interested in the pictures of the children – some he spotted were children with disabilities and others he had different stories for (a boy with a white stick was playing golf!). The statements very gently allowed us to talk about how God made everyone and loves everyone and gave us the chance to talk about disability. We talked about the things Dan can and can’t do and the things that Mikey can and can’t do. We talked about how strong God is. Dan was very interested in the pictures of Krista as a baby and wanted to know more about the operations she has had.

It’s a book I’ll make sure is accessible to the kids because the chats it produced were so helpful and enabled Dan and I to talk about things in a constructive way without it being a forced agenda from me or Dave.

Is it worth a read?
I like this book very much. More so after reading Krista’s Mother’s testimony at the end and after seeing the usefulness of the book in chatting with Dan.

The statements running through the book could appear extremely simple, even obvious. Until you remember they are Krista’s words. A woman who has had over 60 operations and lives with the daily difficulties that her disability tests her with. When she says, “God made me just the way he wanted” or, “He is in control of everything he made, including me” these aren’t empty words or platitudes from someone who doesn’t understand, these are provocative statements of faith which acknowledge God’s sovereignty and goodness in the face of severe difficulty.

The book raised a good conversation with a few family members. We chatted about whether the book was a little bit too positive and whether there should be more space given to the sadness of disability and recognising that it’s a result of the fall. But I feel it’s a book that does its job well. I reminds the reader of God’s goodness without being trite or glib. It’s not a systematic theology of disability – it doesn’t say everything (and Krista hasn’t set out to) but it is an empowering, thought provoking and joy enhancing book. I’m very glad it exists.

I would recommend this book as a great conversation starter both for adults and children. It would be a brilliant book to use with Sunday Club groups to help them think more about including children with disabilities and it is a book beautiful enough to be left out on show and dipped into. On a personal note, it’s encouraged me to remember that God is still good and still in control even when I’m finding things hard because of the impact disability has on us as a family.

If you’re interested you can buy the book here. I was sent the book and asked to review it by Christian Focus, but the opinions are mine!

Christmas feels ages ago. The best bits were Mikey not being too upset by the day, being at Church with all the members of Dave’s family and drinking hot chocolate into the evening with those same people. We also had the chance to visit my family after Christmas which was really special. I think it had been about two years since all of us had been together and we had the beautiful addition of Hannah and Felix’s new baby girl.

We were pleased to have managed to give the kids a couple of successful presents:

Dan got a camera which he has loved even more than we expected. He has taken tonnes of pictures and videos. The images are super low quality (as you can see below!) and don’t take up too much memory.

Mikey finds Christmas and presents very difficult and quite upsetting. So instead of giving presents we asked our parents and sisters and their husbands and children to make short videos. Dave edited it all really nicely with theme music for each section of our family. The video shows each member of the family waving at their front door, going inside, introducing themselves and being filmed doing something (like cooking, playing the guitar, washing up). Mikey loves it. So much so that we plan to do one each year. It’s such an amazing way to keep him up-to-date with family he doesn’t see often. He’s been signing along, trying to say everyone’s name. He’d watch it all day if he could.

Also, the boys got whoopee cushions in their stockings (you can see Mikey’s in the picture above). Oh gosh. 49p for weeks of hilarity. Plus it’s very good for Mikey’s oral motor skills as he tries to learn to blow it up!!

As usual though I’m quite happy to return to normal. It’s nice to have some moments when the house is almost quiet and I can recharge my introvert batteries. I’ve not made resolutions but I enjoy the chance a new year brings to take stock and re-focus. My thoughts for the year ahead are:

• to make sure I’m investing time in the things that matter to me (family, writing, reading, Jesus, etc…)
• to finish one craft project before starting a new one and to continue to hold back on beginning new hobbies
• to complete the Bible reading plan I began at the start of December
• to explore more of my questions and doubts about faith rather than fear them
• to learn to be a better present buyer/maker/giver

What are your resolutions or hopes or aims for the year ahead? Inspire me!

I have a vivid memory of one Christmas Eve. Dad and I were chatting solemnly about stockings and Father Christmas. I looked at him and we both smiled – acknowledging for the first time that we both knew and we knew that the other knew. We ended up weak with unstoppable and wonderful giggles and of course couldn’t explain to anyone why we were laughing – we didn’t dare say it out loud. It was the kind of magic we didn’t want to break.

It never occurred to me to ask my parents whether or not Father Christmas was real (that was the sort of conversation reserved for sisters and friends only).

But yesterday at the grand age of four, as we were putting on all-in-one waterproof suits and getting ready for a walk in the snow, Dan said “Mummy, is Father Christmas real or is he pretend?”.

Dave and I have consciously not told the kids anything about Father Christmas. We did stockings last year but it was part of our advent calendar and they were used to finding treasure in socks! But this year with nursery, Cbeebies and the questions from strangers in Tesco (“have you been good?”) Dan has a much clearer idea of Father Christmas and understands the whole thing.

Our plan was that although we wouldn’t actively encourage the kids to believe in Father Christmas we would carry on doing stockings and allow the kids to go along with the magical idea of Father Christmas. We didn’t want to go out of our way to shatter their belief and so would basically stay quiet until they asked.

Dan’s question was an opportunity either to continue the magic and the belief or to set him straight. So I told him.

I told him about the real St. Nicholas and how he loved Jesus and gave presents to people who needed them. I told him that Father Christmas is a way of remembering how great that was. We agreed that pretending is really, really fun and that we would put out stockings on Christmas eve and pretend that they were magically filled.

I also let him know that his friends at nursery might not know and told him not to tell them.

In all honesty I’m relieved! I feel like we can enter into the fun of Father Christmas without that slight pang that we’re being a bit deceptive.

I’m really glad that Dan wasn’t remotely upset or disappointed.

Maybe some people will be reading this feeling a bit sad that we’ve ruined the magic of Christmas. Perhaps we have. But Dan wanted to know what was real and true.

We’re excited about Christmas (Dan especially)! We’re excited about stockings and presents and seeing family and we’re doing our best to make sure the kids know its exciting because we’re celebrating Jesus coming. The pretend story about Santa is magical and fun but the true story of Jesus’ birth is mind-blowing and amazing. Santa doesn’t have the monopoly on wonder and I guess it would be a shame if we allowed Father Christmas to trump Jesus.

I’ve read a few good articles on Christmas and Father Christmas so if you’re interested have a look.

Two from Neil Powell at A Faith To Live By:

• If you read one thing on parenting this Christmas
• Bad Santa

And this interview on the Growing Faith site.

• Christmas questions for Christian parents

There’s been some great opinions on the Facebook page too.

What would you say?! Have you faced this – how did you (and your children) handle it?

p.s. Dan’s lovely nursery teacher was very encouraging when I warned her about my conversation with Dan. She reassured me that growing up with German traditions, Father Christmas was never part of the celebration in her family – and she didn’t feel robbed or that Christmas was a disappointment!