Journey to Autism Diagnosis – Part One – First days

Over the next few posts I want to share our journey to diagnosis with our daughter. I’ve spoken to several parents who have been on this same journey and I thought it would be helpful to share the struggle we had and in some ways still have. We love our daughter and all her quirks as we love all our kids, my hope in sharing our journey is to offer hope to those in a similar situations.

Where do you start with a story like this? I’m going to take my cue for the first consultant we saw who understood, which took us 11 years to get, they want to start at pregnancy. Which felt like a long time ago, but as it’s where life begins, it’s where our story starts.

I fell pregnant shortly after surgery to remove my gall-bladder, when my eldest was just under a year old. I wasn’t fantastically healthy, even though I was slimmer than I’d been since I was a teenager! But we were super excited and keen to grow our family.

When I was at the beginning of the second trimester, my son got chicken pox and I got a mild case of shingles. Not ideal. We also had to move house when I was six months pregnant! Probably our worst ever house move!

After that though life was pretty straightforward, except that we had to get rid of our car. So when I went in to labour we had to wait for some friends to drive us to the hospital. Everyone assumed it would be another long labour but by the time I got to the hospital it was only 3 hours until she was born.

In comparison to my first that was fast! I think Sean was pretty traumatised by it and for weeks after he said he could still hear my screams! The midwife put in my notes that I was uncontrollable! Pretty funny now but not at the time!

Describing all that to a consultant 11 years later feels like a waste of time, but she added it to the notes. They need the full picture.

Next time I’ll write about those first few days. How all this starts with you questioning whether you’re just a bad mum who doesn’t know what she’s doing.

Tick Tick…BOOM!

It’s been a busy few months and so I haven’t had time to blog but recently I watched ‘Tick Tick…BOOM!’. I know I’m a bit late to the party with this movie! I was reluctant to watch it because no one had recommended it, and I don’t tend to watch a lot of films on my own. I’m so glad I did watch it though. The combination of songs and story were so inspiring.

As a writer I could relate to the struggle of whether to carry on with something no-one might ever see. I got to the end of my first novel and thought it was the only one I’d ever write. Like Jonathan Larson I’d poured years into writing it and when I realised I needed to start again I wanted to have a tantrum and stamp my feet!

But I didn’t. I’ve got another three stories ticking around in my head and I’m currently still editing ‘Reflections’. I’ll write a blog at some point about where I’ve got to. I’m being brutal with all ‘state of being verbs’! I’d never heard of them until recently but removing them as much as possible is making the prose much better.

It’s easy to get bogged down when you’re working on the same thing for so long. Fortunately working with Cadence Publishing means I also have other people’s work to read and edit which brings a welcome relief from the tedium of arguing with the word ‘was’!

If you like musicals and want to be swept away, I can’t recommend ‘Tick Tick…Boom!’ Highly enough. But be warned, you will be singing these songs for weeks afterwards!

Count who?

One of my all time favourite books is The Count of Monte Cristo by Alexander Dumas. I have a confession to make. The only reason I bought it, was because I had a gift card for a book and I wanted to buy the biggest book I could find for the money! When I bought it I was 20 and in my first job as an office junior at a insurance brokers. If I’m honest it wasn’t the most exciting job and during my lunch break I would read my book, as I read further it became the highlight of my day! I started to hide the book in the top drawer of my desk! I would sneakily read a few sentences whenever it was quiet.

Since that first time reading it, I’ve read it through several times. I’ve read it aloud to Sean and have listened to the audiobook a couple of times. There aren’t many stories that have as many layers and surprises throughout. We visited some friends recently who had a beautiful copy of the book on display. I pointed it out and said how much I loved it. We laughed that even though one of them read it, the main reason for buying it was similar to mine! It did look good on their bookshelf!

As with a lot of novels the ending has a huge impact on the flavour of the book. The last lines of the Count are what turn it, from a story about revenge, to a story about holding on to hope.

Live, then, and be happy, beloved children of my heart, and never forget that until the day when God shall deign to reveal the future to man, all human wisdom is summed up in these two words,—’Wait and hope’.

Having just finished it again, I have to marvel at Dumas’ skill in story telling, of holding a secret and tying things together. I can’t imagine the amount of planning and thought it took to put the story together and I hope that I would have the patience to write something so masterful.

Maybe those are the words you need to hear over the dreams you hold – Wait and Hope!

Gratitude

This week one of my prompts in my bible reading was to think of ten things I have to be grateful for over the last year. I wondered, as I considered doing this, whether it would be hard to think of ten things. I’ve been back to home schooling this week as the kids school had an outbreak of Covid among their teachers, it coincided with my husband being away for three days so the weight of educating the children fell on me. This adds a big challenge to daily life and can make you forget the many things you have to be thankful for!

As I got started, I thought of simple things like – a home, a job, friends, food in the fridge, heating and hot water as well as a comfy bed in a bedroom not shared with the kids. Then I was able to get more specific about the many small things that had happened throughout the year, a camping holiday with the family, lovely walks in the woods with my family, friends to cook food for.

Once I got started, I realised the wonderful things in my life far outweigh the challenges. It’s not to deny the challenges but I had spent too much time this week focussing on what was difficult. It doesn’t mean they aren’t hard. Trust me home schooling children without additional needs is tough, and when you add additional needs it can feel overwhelming. But when considered in light of the incredible blessing that they are able to get an education at all, and that we’re able to sit in our warm house to do our learning, gratitude begins to erode away the challenges.

It might feel like a waste of time but I’ve read elsewhere that keeping a gratitude journal can really help with your mental health and general wellbeing. Why not try it? I bet your list will be longer than you expect!

Fireplace Season

As the weather has gotten colder I love having an open fire in the lounge. Even the smell makes me feel cosy and warm. Last night I sat next to the fire with our lovely lodger, Rhi, while we both worked on our laptops. No sound except the tapping of our keyboards and the crackle of the fire.

It’s also a distraction! I was supposed to be editing my novel again and replying to Cadence related emails. Instead I put the laptop aside every few minutes to prod at it and feed more cardboard into it! (Hence all the ash in the picture.)

I don’t know about you but procrastination is a big challenge and throw a fire in the mix and I’ve got ample reason to get distracted! Add the cat and there’s no chance of getting work done.

So how do you overcome distraction and procrastination? In my case you don’t be the one in charge of keeping the fire going! I’m not good at it! Next you shut the cat out of the room, and lastly set yourself a target. For me last night it was to get to page 200 in my novel editing. I didn’t quite succeed but there’s always tomorrow.

Blazing fire (only took an hour to get going!)

One bite at a time!

I don’t know if this is a phrase your familiar with but there’s a saying that says to eat an elephant you need to take one bite at a time! That’s so helpful as I think we can see our destination and want to get there. We’re at A and we want to get to Z. So we’re looking for the one step to get there. But first we need to get to B, then C and so on. Sometimes progress is slow and others we seem to skip through the steps.

Writing and editing a novel is a lot like this. As you write your first draft, you see the word count climb and you get more and more excited that you’re actually doing it! Then you get to the end and feel you have written the most perfect novel there ever was. Then you look at the start and realise you still have a lot of work to do. You make it through your eighty thousand words again and change things and polish it. Then you timidly put it into the hands of your editor, bracing yourself for the inevitable amount of work about to come back at you!

This isn’t just a principle for writing though. I think it can be applied to every area of life. Starting a new job, you want to be good at it right away but instead you make mistakes, have to ask again what you’re meant to do or find yourself crying in the toilets as you battle self doubt!

A major area I’ve faced this, is in parenting. I know what I want my kids to grow up like, but when they were two, three, and even four that really seemed impossible! They’re still not fully grown but I have two teenagers who I think are amazing! It’s gone so fast.

At the moment though I’m editing ‘Reflections’ again! I’ve lost count of how many versions I’ve gone through now. I’m realising patience is a virtue in writing as in everything else. I’ve also learnt that I get as defensive about my writing as I used to be about my parenting! For more about my struggles with editing read my blog on it here.

So whatever ‘elephant’ you’re facing, don’t be intimidated, what’s your next bite?

Turning 40!

This last month I turned 40! It feels like a big milestone in a lot of ways. I remember my parents turning 40 and at the time they seemed so old! But I don’t feel old. In fact I remember my great grandmother telling me in her late eighties that, until she tried to stand up, she felt 18! In my mind I don’t feel any different and yet now people expect me to be properly grown up!

All of a sudden I realised that I’m not really in the young category anymore. Age, I’ve realised, is relative and getting older isn’t something I’ve ever worried about. What it does make you think is about is what you’d still like to achieve? What dreams have I still got shut away in my bottom drawer? A good friend of mine recently completed a triathlon and it got me thinking, firstly, wow, she’s amazing! But also is there anything like that I would like to do before it’s too late!

There are some dreams that take a lot of hard work and others that we have to just wait for. As I think about dreams I can’t help but think about the dreamers in the bible. Someone like Joseph with his technicolour coat. He dreamt about his brothers bowing down to him, but in order to get there he had to be thrown in a pit, made a slave and then put into prison. That all probably seemed like a massive detour! He may even have forgotten that dream as he sat in the dungeon. But ultimately, his faithful commitment to not becoming bitter, meant he saved a nation and eventually saw his brothers bow before him.

What about men like George Muller who dreamed of helping orphans to find a home. He started small, housing some girls in his home with his wife. This grew until he had built a whole complex of orphanages in Ashley Down in Bristol. If you have time to read his story, you’ll be inspired by his passion and his faith.

Or William Wilberforce, who saw the wrong that was being committed to men and women caught up in the slave trade. He dreamt of seeing those people set free, but it took his hard work and dedication to see that happen.

So as I turn 40, and Sean will turn 40 next year, we’ve begun to ask one other, what’s the legacy we want to leave? What are our dreams? Are we willing to put in the hard work to see them come about? Or will we look back with regret at missed opportunities? Whatever age you’re at now, these might be questions to ask yourself. It’s never too early or too late to look for those dreams to come about.

Disciplines

It’s been a while since my last post and that’s mostly because of the summer holidays, juggling children and work. But now I’m back in the office and enjoying seeing different people every day! It’s still a novelty and I get excited as I head in every morning.

This new season has made me really assess where I have good habits and where I’ve gotten lazy and into bad habits! It’s easy isn’t it to make excuses for why we haven’t gotten up early to work out or why it’s ok that you’re eating chocolate on a Wednesday afternoon!

So my evaluation has meant I’ve made some changes and has made me ask myself what helps me to stay disciplined. I’ve realised the biggest thing is getting enough sleep! At one stage in order to wake myself up with my alarm I made it so that my alarm would only turn off if I did an arithmetic sum! That was evil first thing! Sean didn’t appreciate it at all, as sometimes it would take several attempts to get it right all the while it’s beeping. My brain doesn’t work first thing!

Now what I do is sit up as soon as my alarm goes off. Don’t give my brain time to argue or rationalise that it’s too early or think of an excuse why it would be better to stay in bed! It’s always easier to stay in bed! I wish I could say it gets easier, I’ve heard lots of people say it does, but for me it never has! I love my bed! I don’t love to work out!

Whatever you choose to be your discipline, it’s important to be kind to yourself in it. If you don’t manage it one day don’t beat yourself up and don’t think that means you should give up completely. Every morning is an opportunity to start again.

Our minds are very good at thinking up excuses, so maybe it’s best to get ahead of them and decide to do it anyway! Whether that’s in terms of exercise, eating or reading. I know that my disciplines lead me to a happier life. Exercise makes my body healthier and reading my bible every morning makes by spirit healthier. Both are a choice and both mean I have to take action.

What are your disciplines and how do you keep them up?

Covid in the House Again!

You know that God has a sense of humour when you write a blog about having routine and planning and then your other son gets Covid and all that goes out of the window!

Our little two had colds last week and so we did lateral flows on them that came out negative. But as we had my father in laws wedding on the Friday we thought it sensible to do the PCR tests as well, feeling confident they would be negative, but meaning that if one of them coughed at the wedding we could put peoples minds at ease by telling them it’s not Covid.

I’m sure you can guess what happened! One of the tests came back positive. There ensued lots of tears and hand wringing over what to do. Do we all really have to isolate? Should we really miss such an important day in our family? In the end integrity won out. We stayed home and missed a lovely day with family.

There’s so much debate still about what the kindest thing to do is as I wrote in a previous post but I know that, however hard a decision it was, we did the right thing. We protected others and the wedding went ahead without a hitch.

Instead of being there in person we dressed up and stayed home. My littlest even wore a top hat for the occasion!

My lovely family all dressed up!

Here’s a photo of the happy couple. We know they had a lovely day even if we couldn’t be there and we know we’ll have another opportunity to celebrate with them soon.

The happy couple!

Paella with Chicken and Prawns.

In the summer this is one of my favourite recipes to make. Mostly because it feeds loads of people! I’ve added a photo of it near the end. All that’s left to do is add the prawns and peppers. By the time it’s ready everyone is salivating to eat so it’s hard to take a photo of it looking beautiful in the bowls!

The nearly finished product!

This recipe is just a guide, feel free to adjust as you need to. This will serve probably about 8 to 10 people. Great for a summer party.

Ingredients:

  • 1 tsp Saffron threads
  • 3 tbsp Hot Water
  • 500g Paella Rice
  • 6 tbsp Olive Oil
  • 8 skinless and boneless Chicken Thighs, chopped
  • 200g Chorizo Sausage, sliced
  • 2 Onions, diced
  • 6 Garlic Cloves, crushed
  • 2 tsp Smoked Paprika
  • 150g Green Beans, chopped
  • 150g Frozen Peas
  • 2 litres Fish Stock
  • 20 Raw Prawns (or as many as you like!)
  • 2 Peppers, sliced
  • Salt and Pepper to taste

Method

1. Put the saffron threads in hot water in a small cup or bowl and leave to infuse for a few minutes.

2. Meanwhile put the rice in a sieve and rinse in cold water until the water runs clear, then set aside.

3. Heat 3 tablespoons of oil in a large casserole dish (or paella pan if you have one). Cook the chicken thighs over a medium-high heat. Then lift out with a slotted spoon and transfer to a bowl.

4. Add the chorizo to the pan and cook for about a minute until beginning to crisp and then add to the chicken.

5. Heat the remaining oil in the pan and cook the onions, stirring frequently, for 2 minutes. Add the garlic and paprika and cook for a further 3 minutes, or until the onions are soft but not browned.

6. Add the drained rice, beans and peas and stir until coated in oil.

7. Return the chicken and chorizo and any accumulated juices to the pan. Stir in the stock, saffron and its soaking liquid, and salt and pepper to taste and bring to the boil, stirring constantly.

8. Reduce the heat to low and simmer, uncovered and without stirring, for 15 minutes, or until the rice is almost tender.

9. Arrange the prawns and peppers on top, then cover and simmer without stirring for a further 5 minutes, or until the prawns turn pink.

10. Taste and adjust the seasoning if necessary.