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Being Toby's Mummy…

loving a special little boy with ASD through the ups and downs of life

Moving Diaries #1

One thing children with autism find really difficult is change. Toby gets upset if we change his bedding or move something in the house and he even goes to school in his uniform on non-uniform days as not doing so freaks him out…so imagine the impact of changing EVERYTHING. Continue reading “Moving Diaries #1”

Gruffalo Spotters!

Today we went on an adventure in the deep dark wood…

Having a three year old who knows the story of the Gruffalo off by heart, we just HAD to check out the new Gruffalo Spotters trail at Hamsterly Forest.  Continue reading “Gruffalo Spotters!”

An apology, an update and some exciting news…! 

Well it seems forever ago since I actually blogged about anything. That’s not entirely true as I have started writing a few things but never actually got round to finishing/spell checking/publishing them! One of my aims this week is to finally tell you what we got up to over Christmas and share about Teddy’s birthday (which was at the beginning of December…ooops!!)  Continue reading “An apology, an update and some exciting news…! “

Christmas at Center Parcs…

Well here it is…only a month or so late!!!

So we had a lovely couple of days away over Christmas at Center Parcs Sherwood. This was our second Christmas away after a really difficult time with Toby over the Christmas period two years ago. He finds Christmas really challenging but enjoys being away and if he’s happy then everyone else can enjoy themselves so it just works for us all. Continue reading “Christmas at Center Parcs…”

Christmas trees and chaos…

It’s the time of year when even the lady in the corner shop asks, “So are you sorted for Christmas?!” I begin the question myself…am I sorted for Christmas…? I usually reel off something about my little boy doesn’t really like Christmas so we go away and so that takes the pressure off a bit…blah blah. Continue reading “Christmas trees and chaos…”

Our visit to Thomas Land – 

Anyone who knows us well will know that we love going away! As Toby would struggle with a long break (never mind going abroad) we tend to have lots of little breaks rather than big holidays. Last weekend we booked a very last minute trip to Drayton Manor to see our favouite little engine and enjoy some much needed time away from the business of everyday life.

Thomas Land is based in Drayton Manor theme park which is about three hours away from where we live so a little far to go there and back in a day. Although Toby isn’t the world’s greatest sleeper we decided to book a family room in a Travelodge and travel down Friday evening so that we could make the most of the Saturday at the theme park. I only really started worrying that he wouldn’t sleep on the journey down and had visions of us sitting outside in the car with him all night or pushing him round the service station next door in his buggy at 2am. We just prayed and thankfully he slept 10pm-4am which is pretty good for him in a new place. Keeping him occupied  at 4am in a Travelodge while Teddy was still asleep in the same room was interesting but we survived!

Due to it being the Christmas season the theme park only had a limited number of rides open and because of this tickets were much cheaper than normal. All of Thomas Land was open (which was all that really mattered to us) as well as a few smaller rides. There were also Santa visits available, a 4D Polar Express viewing as well as Christmassy shows and decorations.

We booked our tickets online as due to only certain rides being open tickets were much cheaper than usual and we still got a reduced rate for a disabled person and carer. My Max Card also have a discount on ticket prices which is a great saving during the main season if you have one of those.

The park opened at 9:30am, however the rides didn’t run until 10:30am so we timed it so that we had to just enough time to get a ride pass from Guest Services for Toby (as he can’t queue) before the rides actually started. More info about access for guests with additional needs can be found here –  www.draytonmanor.co.uk/useful-info

Teddy loved seeing all his favourite characters and literally bounced around the park, Toby clapped and flapped and enjoyed the rides – especially the Troublesome Trucks Rollercoaster. We did have a bit of an issue waiting onboard Thomas (yes actual Thomas!) for a train ride to the adventure playground. There was lots of lights, noise and excitable people (very overstimulating) and although we were in a carriage by ourselves Toby become very distressed as he wanted the ride to go and we had to wait. He just didn’t understand why we were on a train and it wasn’t going anywhere…and because he can’t speak, his way of expressing that is to lash out and scream. Thankfully he soon calmed down as soon as Thomas started to go…phew!

They both loved the playground and we had our picnic lunch there too. The disabled toilets at the playground also had a bench for changing which was great as often these type of places just have a fold out baby changing station….which with a five year old that isn’t ideal!
By about 1pm Toby was getting a bit overwhelmed, even though he was queue jumping he was getting stressed waiting for the safety checks before the rides started and was ‘peopled out.’ I found somewhere quite and took him for a walk in his buggy and he had a little sleep. It always amazes me how he can go to sleep somewhere busy when he’s stressed…but not at home without medication. It’s obviously a coping strategy he uses as he used to do it at toddler groups when he was little – he would just cuddle up on my knee in the middle of a noisy room and go to sleep! Teddy enjoyed the soft play and a few more busier rides while Toby slept which was nice for him. Toby didn’t really sleep for long and woke up stressed…one of the songs that they were playing (a Thomas and friends Christmas song) really upsets him. This song used to be a favourite of his and he would play it over and over again on his iPad, however if it comes on these days he covers his ears and screams. Just shows how something so simple can have a huge impact on him.

By 2pm he was ready to leave and we headed home having all had a fun day out. It was lovely to see lots of children (and a couple of adults too) with additional needs enjoying a family day out. We had lots of understanding smiles and nods from other parents and carers which is always nice. Thank you Drayton Manor for catering so well for guests with disabilities – it really does make a big difference!

Dear Durham County Council, from a Special Needs School Parent.

Here in Durham we’ve had on going issues regarding the Teaching Assistants with may facing huge paycuts and loss of jobs. Many Schools are closed due to strikes – today is our third day in two weeks with another three strikes planned over the next two weeks. I do fully support the Teaching Assistants however School closes are difficult for a child like Toby to cope with…probably why he’s been up since 3am – yawn!  Continue reading “Dear Durham County Council, from a Special Needs School Parent.”

Sometimes even ‘Super-parenting’ isn’t enough…

I read an article this morning on BBC news this morning which suggested that “Super-parenting’ improves children’s autism…even in severe cases. Here’s there link if you’re interested – http://www.bbc.co.uk/news/health-37729095  Continue reading “Sometimes even ‘Super-parenting’ isn’t enough…”

Some days I crave normality…

On days like today I find myself daydreaming about ‘normal’ family life.

On days like today I find myself asking questions like, ‘how different would family life be if we didn’t have children with additional needs..?’ and ‘how much better would we function if we slept like normal people do?’ Continue reading “Some days I crave normality…”

Our trip to Alnwick Gardens…

Most people enjoy visiting gardens and attractions in the Summer when the weather is nice and you can really enjoy the scenery and being outdoors…however we don’t tend to do what most people do and so picked a cold, wet October morning for a trip to the beautiful Alnwick Gardens.

There was method to our madness as when the weather is good most places get too busy for Toby to cope with. The weather definitely put most people off as I could probably count on two hands the number of other tourists we bumped in to yesterday.

Joel and I had visited the garden last year on a rare child-free day out and we loved it but both agreed that we wouldn’t be able to take Toby there. However yesterday we were feeling brave (or stupid) and decided to hop in the car and go for an explore.

Thanks to our amazing Max Card the four of us got in for £12 – both boys were free and it was £6 each for Joel and I. I did a quick calculation at the ticket desk and realised that it would have cost about £35 if we had had to pay the on the door prices. Seriously I don’t think we would have visited if we didn’t have the card mainly because Toby only usually manages to cope for about an hour in new places like this and £35 is a lot to pay for just an hour…so thank you Max Card!

One of the most famous features at Alnwick Gardens are the AMAZING fountains. It’s seriously like watching a theatre production as you just don’t  know where to look next as water shoots from all different directions.

However Toby and water isn’t always a good combination….he does love it however his behaviour can be very unpredictable and he did try and dive in a couple of times!! His Peso the penguin from the Octonauts had a few near misses too.

Here’s Toby enjoying the water …he doesn’t speak and so reactions like this a priceless for us!

We soon realised that waterproofs were far more practical and thankfully we had them in the bag so we did a quick change. I would say that if you a planning on visiting with little ones, wellies, waterproofs and spare clothes are essential as there is just so much water to play and interact with.

Both Toby and Teddy enjoyed exploring and the calm atmosphere and enclosed walkways helped Toby to feel less anxious. He did prefer to be in his buggy and although there are quite a few steps around the garden but there are pushchair/wheelchair friendly routes too.

The boys loved the water, here’s Teddy exploring…

30 seconds later this happened…we did laugh!​

​Toby managed an hour and a half in the garden before he had had enough and needed to leave but all in all we had a great morning and will certainly be back soon. 

Here’s a couple of practicalities if you are planning on visiting with a child with additional needs –

  • Disabled parking is free and is on the opposite side of the road to the main carpark (main car park is £3)
  • There are quite a few steps around the gardens and so if you are using a pushchair or a wheelchair make sure that you check out the accessibility map to avoid the steps.
  • Wellies and waterproofs are essential .
  • If you have a child with sensory needs or an obsession with water I would suggest that they need 1-to-1 support during a visit as although some features are suitable to play in, others are for display only and there are ponds and water features all around the gardens.
  • The disabled toilets in the entrance/gift shop have good changing facilities which is great if like us you have older children in nappies.

Ps – sorry we’ve been so quiet recently, life’s been a bit crazy here and my head just hasn’t been in the place to write about it! We’re ok though 🙂 xx

Lightwater Valley! 

So we decided to cheer Toby up with an adventure day. He’s found the transition from holidays to school quite challenging and he’s been quite distressed this week.  Continue reading “Lightwater Valley! “

A rocky start…

So since 3am this morning Toby’s been bouncing around in a swimsuit, trying to wrap himself up in a curtain whilst watching clips of Thomas in Japanse…standard Wednesday morning really!

Monday marked the end of the Summer holidays for all of us as Joel and Toby headed back off to school. I would love to tell you that everything has been great since getting him back in to his normal routine however it’s been a bit of a bumpy ride..!

Although things are the same in a lot of ways; same uniform, same taxi driver and escort, same school etc he’s moved up to a new class with a new teacher and support staff and there’s two year children in his taxi too which is now a mini bus rather than a car. Little changes to something familar and safe can have a pretty big impact on Toby and sometimes it can take him a little while to adjust. Transitions are tricky.

I’ll spare you too much detail but his behaviour has been pretty challenging at home; hitting Teddy, throwing things about, screaming, not much sleep and last night I turned my back for two minutes and he had smeared all over our bedroom…yes curtains, walls, bedding etc! Not nice…this is why his wearing a swimming suit at the moment as its about the only thing he can’t get out of…and I can not cope with him taking his nappy off one more time! 

I do just have to keep reminding my self that he’s stressed and has no other way of expressing that…and I have to keep praying for grace for myself to help me love him in the best way possible. 

It must be hard having so much going on in your head and to be worrying about changes yet not being able to communicate or discuss any of it. I had to stop myself butting in to a conversation yesterday with some parents who’s children had just started reception and they were complaining that they couldn’t get any info about what the kids had done at school or what they had for lunch…I felt like launching in with a, -“well what if you had never heard your child speak ever?” or “What if you never knew what was going on in their head or how they were thinking or feeling?” or even, “What if you didn’t even know what their voice sounded like?” I resisted. It is times when he’s so distressed that I find him being non-verbal the most upsetting as I just want to help him and often I don’t even know what the issue is. 

That all sounds a bit moany…we are ok…just adjusting! Anyway look how much he’s grown since he started school just after he turned 3…it’s bury to hide the name of his school…

Isaac and his amazing Asperger Superpowers!

Whilst browsing the bookshop in Seven Stories today something caught my eye. I’m not sure if it was because I’ve got a brother called Isaac or maybe because things about Autism just seem to gravitate towards me but I knew straight away that we would be purchasing Isaac and his amazing Asperger Superpowers!

The bright and colourful book looks at life from Isaac’s perspective. It cleverly balances the some of the positives and some of the challenges of having Asperger’s Syndrome which is a type of Autism.  Continue reading “Isaac and his amazing Asperger Superpowers!”

My Max Card

Just another super quick update to let you know that Toby’s been given a Max Card!

Max Card offers fantastic discounts on activities and days out for children with additional needs or who are in foster care right across the country. The sad thing is that because these are funded through the local authority some areas (including ours!) don’t actually provide them.  Continue reading “My Max Card”

Visiting our consultant…

So we had an appointment for the boys this morning with their consultant. We always try to get hospital appointments during school holidays so as not to disrupt Toby’s routine and because realistically I can’t manage both boys at an appointment without Joel!  Continue reading “Visiting our consultant…”

Shiremoor Adventure Playground

So we’re on week 4 of the holidays now , sorry for the lack of updates…holidays are a pretty busy time for us and I just haven’t had the time or mental capacity to actually write anything! Yesterday we decided to try a bit of Vlogging….you can watch our first video here… Continue reading “Shiremoor Adventure Playground”

Summer so far…

So we’re nearly at the end of week one and are surviving so far!  Continue reading “Summer so far…”

Our North East ASD friendly Summer Holiday Bucket List

So Toby has officially broken up [insert mixed emotions!] and is off for the next 46 days…yes I’ve counted! He’s also been up since 2am as he struggles with transitions and he knows it’s the end of term.  Continue reading “Our North East ASD friendly Summer Holiday Bucket List”

Alton Towers – days 2+3

Incase you missed it, we had a great weekend break at Alton Towers last weekend (for day 1 check out – Alton Towers – day 1  )

I’m pleased to report that Toby slept better on Saturday night however we’ve all been pretty tired this week.  Continue reading “Alton Towers – days 2+3”

Alton Towers – day 1 

As a general rule I usually wait until we are home to write up what we’re up to but considering I’ve been awake on and off since 1am we’ll start and see how far we get!  Continue reading “Alton Towers – day 1 “

Toby turns 5!

On this day 5 years ago our lives changed forever. Little did we know that we were about to begin one of the greatest (and most challenging) adventures of our lives. On this day 5 years ago our Toby was born.  Continue reading “Toby turns 5!”

10 things that make our lives (slightly) easier…

There’s lots of ‘specialist’ equipment, aids and ‘accessories’ for children with additional needs available – some rather expensive and others rather pointless (in my opinion!) All children with additional needs are very different, all children with autism are very different and have different needs and challenges.  Continue reading “10 things that make our lives (slightly) easier…”

half-term-holidays!

I haven’t lost the blogging bug (honest) it’s just becoming more difficult to find time to write. Toby’s spending far more hours awake than asleep and when he sleeps I sleep. Continue reading “half-term-holidays!”

The challenges of positive relationships for parents and carers.

This week is Mental Health Awareness Week and the theme this year is positive relationships. Continue reading “The challenges of positive relationships for parents and carers.”

So what’s been happening recently?

Well I haven’t blogged for a while…things have been pretty busy here but we are ok…honest!  Continue reading “So what’s been happening recently?”

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