So it’s Friday morning….it’s 5:37am…and for the first time this week Toby is actually still asleep! He’s had a tough week, he’s been very emotionally and quite difficult and his sleep has been awful. We’ve put it down to it been the last week of term and things being different at School…I do wonder if he knows that it’s all coming to an end for a while? 

Having a non-verbal child is difficult. We’re never sure how much he understands as he doesn’t give anything back. It’s not like we can talk about it or prepare him for six long weeks off school…He doesn’t understand holidays. In his head he goes to School mon, tues, weds, thurs, fri and then he’s off sat and sun – it’s as black and white as that! We have a visual timetable which includes the day of the week and the words , ‘it’s a school day…’ or ‘it’s a home day…’ and a picture of our house/school depending on which day it is.

5:46am he’s up now but compared to the 3:30am gets ups I’ve had this week 5:46am is a lie in!

School holidays have been such a challenge this year. He has been very distressed and often just sits at the door crying for his taxi to come. His behaviour has also been even more of a challenge with lots of violent meltdowns and his sleep pattern being relatively non-existent in holidays. Toby takes melitoin to help him settle every night but it doesn’t usually have any effect during the holidays and he spends most evenings crying and wondering around the house.

It’s been on my mind a lot this week about how he’ll cope with being off for six weeks and how we’ll cope with his behaviour and needs. Usually by Sunday  evening I’m more than ready for him to go back to school and that’s after two days…never mind six weeks!

I wear a Fitbit. It’s an activity tracker which monitors steps and exercise with the aim of becoming more fit and healthy. It connects via bluetooth to my phone and give me lots of data and you can set goals and challenge friends.


Apparently it’s recommended to do 10 000 steps a day (not sure by who!) and my Fitbit vibrates on my wrist when I’ve made that goal and uses lights to track my progress up to that goal. Each full lit light indicates 20% of my step goal and they all light up when I reach my goal of 10 000.

I have to admit that most days I don’t reach that goal. I maybe do 3/4 days a week. These are the past two days….


Wednesday I didn’t stop all day…support group, nursery runs, Toby’s OT, meeting with friends, walk in pushchair to get Ted to sleep etc. resulting in 11 500 steps (well over my goal) However yesterday we just pottered around the house – I played with Ted, did some cleaning and baked some cakes for toddlers. So only 4 261 steps…not even half my step goal of 10 000.

Some days getting 10 000 steps happens without me really trying and other days I’m no where near. Some days the weather is rubbish or I’m sat in meetings most of the day or have a whole afternoon of emails and admin to do and so my step goal isn’t met. I don’t beat my self up about it! I do want to reach my daily go but it’s realistically not always possible.

I think the summer will be a bit like my steps this week. There will be good days and not so good days, days that go to plan and days that I’m completely unprepared for. Ups and downs, highs and lows but my goal is  to trust God that he will give me the engergy and grace for each day. I want to rely on him and not to try cope in my own strength.

I don’t want my expectations to be too high or too low. I do want us to have fun and enjoy being off together I know not everything is going to be perfect or work out how I plan but that’s ok.

And you will be pleased to know that I finished today on 9 824 steps.

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