Helpful holidays

Today’s musings. I’m so nosey when I’m on holiday. I’m always watching other families and how they interact, I’ve also spoken to quite a few other parents of autistic kids. We all have the same struggles. Why not just get a villa? I have a ten year old who loves making friends, getting ready for the ‘night time’, playing footy. And I’m a people person. I like talking to complete strangers and walk away content that I know where they are from and what they’ve had for their tea. I also want Reilly to be around others, it’s life. People won’t disappear as he gets older there’ll be more need for interaction. And most importantly I am not cooking on holiday. There are many millionaires in this world, billionaires in fact. I would really like it if one of them or even a double dragon would create a disability friendly resort.

Not just autism, any disability. Accessible toilets, parks, water parks. Rooms designed with people of a disability or different ability in mind. Here’s what would work for me if anyone would like to give Peter Jones and Deborah Meaden a nudge.

1 month prior to departing hotel to send pictures of the resort, not the ones an estate agent would use, the nitty gritty. How big the dining room is, what the air conditioner looks like, what type of toilet flush and shower head. What the beds looks like. You get the idea.

On arrival at said airport. Resort needs to be near airport no more than 30 mins drive. Accessible bus. No collapsing buggies or not being able to board with a wheelchair.

The rooms should have balconies that tall you couldn’t climb over but can still see out. They should have a means to lock the door or gate it from the inside. Everyone fears the child waking in the night and doing a runner. Rooms should be soundproofed too. Bathrooms again fully accessible. TVs should always have Disney kids channels available 24/7. Autism doesn’t sleep, neither do we. Hearing loops, signed welcome meetings, Braille hotel guides. You get the picture.

Specialised medical equipment that is bulky and essential should be available for hire without a charge and sterilising facilities available. Nappy store in every size and variety.

Dining room should be loaded with Nutella and sliced bread 24/7 ūüėā this is possibly one of the most important factors for us. Times should not be strict around dining. There should always be chips, chicken nuggets and drinks available at ALL times. Plastic plates to stop the clattering. Food could be packed into takeaway cartons and taken to the rooms. PECS visuals.

Entertainment should not be as loud and god forbid I even say it but children should be able to dance on the stage!! A playroom available at all times again 24/7 not just 1-3 and 5-7 for the kids who don’t like gangnam style.

DVD players in all rooms and a selection on DVDs available from reception.

The hotel should have direct access to the beach with walkways provided for wheelchairs, buggies etc. All parents should have walker talkies to summon bar service so you don’t have to disrupt said child.

I could go on. Maybe a petting zoo and a couple of accessible rides. Staff trained in special and medical needs would help enormously.

I’m waiting …….. until I win the lottery we’re relying on you Peter Jones. If you build it they will come ūüė¨

Reilly the Bouncer

I ventured out this morning with Reilly to Airbox Bounce at Cramlington.  Reilly has been here before and loves it.  This morning was different though because we went as part of the specially arranged sessions with Autism Northumberland.

I’m a softy and a bit of a home bird with Reilly in the holidays but when offered a lift and some company with my nearly cousin and her 2 boys. I decided to take it and give it a go.

I’ve mentioned many times before how difficult it is taking Reilly along to activities for many reasons- the main being understanding of members of the public, some people are incredibly rude and unlucky for them as Reilly grows older and my skin grows thicker I have no problems addressing the tutters and moaners straight on.  Tut or learn is always my mantra.

We arrived just before 10 and parked at the rear of the building.  This has been well thought out and lets the kids from the group leave without having to negotiate the groups of people arriving for regular sessions. They also countdown to the end of the session which is great for the kids to prepare. 

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There were plenty of staff there to ensure the kids were safe.  Because it was just our kids and their siblings it was perfect.  No blasting music to set off any sensory issues. Lots of space to play without the rough and tumble at their own pace. 

There is a cafe upstairs that sells everything you could need or want (soya milk is good Airbox for those dairy free folks ūüėČ). The cafe has a great view of the whole trampoline park below.  

Downstairs where the majority of parents/carers gathered is a small soft play area which Reilly enjoyed.

He had a great time and has been typing Airbox into the mac this afternoon so safe to say we’ll be back with the Autism Northumberland group check their Facebook for booking info.  Being able to have fun with Reilly without the judgements, stares and being able to relax is priceless. 

While I was there I picked up a nomination form for Autism Northumberlands Awards Ceremony which is just a lovely idea.  These children are special, we all know that but by Christ they have a struggle and this ceremony is to celebrate those achievements no matter how small.  Nominations are open to anyone if you know a superstar you would like to put forward.   Nomination link


Did you ever have one of those days? 

When I got home tonight after our post school jaunt about it was 8.15. I was cold, wet and tired. The tiny blister on my little toe is now a hole that hurts.  I had with me one my little pony Easter egg and a sly fry’s peppermint cream. As I came through the door I was greeted you the dove from above “Mam what’s for my tea!”.  I nearly dumped Reilly in the kitchen and considered bolting back out the front door and hiding in the nature reserve across the road. Nearly.

Tonight we went to the park unfortunately tonight none of the child things were of any interest Reilly wanted to be on the field where the junior footballers were trying, in their clubhouse and more alarmingly in their cars. Looking in the windows and trying the handles like a lifelong twoc-er. So I escorted him out under duress. 

This happened next I only filmed a tiny snippet for safety reasons.

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Back up on his feet he ran straight back into the park picked up a handful of gravel and ran, i ran after him muttering FFS while trying to stay alive from exertion.  Only one thing for this scenario and that’s the Piggyback, as long as I have the strength I can get him from A to B with no escape. Bit like Bran and Hodor we headed out the park to McDs which isn’t that far but with Brandon your back and your ‘big coat’ while it’s pissing down its zero fun.  Got there wouldn’t go in. More kicking off crying etc so I thought I’ll buy him a kinder egg from the garage. At this point I’m dying for a wee and have a trapped wind pain in my bum, wouldn’t go in and I can’t use the toilet because the door is too far away from the toilet to keep shut with your foot.  He won’t do McDs toilet neither because he doesn’t like the sounds.

Willow Farm it is because I cannot carry him another inch and he collapses in a heap and refuses to walk in any other direction.  I never dreamed one of children could match me on stubbornness but this kid is a master.  I plodge along praying my bladder will hold out. I buy one child’s carvery (no waiting) and one drink and sit like an drowned rat while Reilly jumps up and down on the kids chairs watching Finding Nemo.  We head to the carvery where the lovely young man says come on lad tell me yourself what you would like, I do my usual hah hah hah he’ll have Turkey but he asks Reilly again to which I say he can’t tell you he’s non verbal autistic.  Honestly the lad was mortified and apologised profusely to which I replied don’t be sorry it’s ok it really is and meant it.  He asked tons of questions about how we communicate etc which is great. 

It’s now starting to get dark, I have no phone (still) so I message shane on the iPad but it hasn’t SIM card in it after Reillygate ¬£200 bill and it’s not connecting to the pathetic Cloud. My messages delivered after I got home.

 

So we are off, my blisters popped and I still haven’t had a wee. Reilly is pointing at my shoulders to get on but I just can’t so make a running game to keep him moving forward.  Straight home nayyyy Christine we are going to the garage for a bastard kinder egg at this point I would have bought the ten pound egg to get home, he settled for The My Little Pony ¬£5 waste of money egg and I’m appalled at how quick I crumbled tonight. The walk home I can’t quite decide what fettle I’m in on one hand it’s nearly bed time on the other I’m sick as a chip and hungry. 

25 minutes later ….

Opens door “Mam what’s for my tea?” Wee before tea I say.  With coat still on gets pans out and starts tea I can’t eat it as it’s got dairy in and can’t be bothered to do anything else and put myself 2 slices of toast in and make a cup of tea. Put my fave Morello cherry jam on it and dish up the pasta while doing this Reilly puts both slices of toast face down on the kitchen floor and stands on them still in his shoes and tips my tea down the sink,he takes his new purple my little pony out the egg brushes its hair once and throws that in the sink too and I have to just stop and breathe. 

Some days are like this, most days in fact are like this. It’s not all Jet2 and cute photos.  I’ve sacked off the toast and in bed with a cup of tea and my sly Frys peppermint cream.  Pray for a full nights sleep.

Reilly 5 Christine Nil.

Eve’s Birthday at The Tim Lamb Centre

After a hopeless week its been rounded off with a lovely day today. ¬†Reilly was invited along to one of his classmates, ¬†Eve’s birthday party at one of mine and Reilly’s favourite places¬†The Tim Lamb Centre.

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I’ve blogged about this place before. ¬†Its always been somewhere that I can truly relax. ¬†Staff, parents, other children – we all get it. ¬†Naked runner through the cafe – no sweat. Meltdown in the ball pit – no problem. ¬†The centre provides leisure and social opportunities for children with disabilities & additional needs in the North East of England, i’m lucky enough to have it 5 minutes drive away. ¬†All children need a place to play and opportunities to socialise with their friends, but for some children with disabilities & additional needs, accessing community facilities can prove challenging and sometimes impossible.

Last couple of class parties for Reilly have gone pretty well so I had high hopes for today. ¬†Mini panic¬†en-route when he realised we weren’t headed to Smyths but was soon resolved with a couple of photographs of the centre on his ipad. The centre has just reopened after a big refurbishment so I was looking forward to having a nosey around.

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The Tim Lamb Centre is set in the Rising Sun Country Park at Benton nestled behind Asda. The refurbishment includes a £200,000 extension which includes a new café area, kitchen and accessible toilets, new soft play has been fitted and all rooms updated.  There is a games room, toddlers and music room, sensory room, computer room to name a few.  The gardens are enormous and fully equipped Рthat even includes, rabbits, chickens and goats.

Today was important for me not just because I love to see Reilly with his school friends as minimal as that interaction might be but it gave me a chance to take Ellis my 10 year old along too see Reilly in an environment where he is comfortable and not judged.  

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Ellis struggles with the fact that people look at us and are sometimes very rude. ¬†It also gave Ellis a chance to see that Reilly’s behaviour is not just Reilly playing up, Reilly¬†is not the only one. ¬†We had a good chat with Deborah at the centre about their Sibling scheme and Ellis is really interested in meeting other children who are in the same position as him and is looking forward to joining in with their days out and sessions in. ¬†It may lay to rest some of his questions like why did it have to be me who got an autistic brother, breaks my heart but until you see the disruption within the family unit you cannot begin to understand.

Overall a great afternoon, kids were great, Ellis enjoyed it, ¬†Reilly managed to leave Eve’s birthday present wrapped up which is a first and it gave us parents a chance at feeling, dare I say it normal – ¬†whatever that is just for a little for a bit.

Big Happy Birthday to Eve and thank you for having us x

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Toilet Time – celebrating our first poo

So Reilly has had a poo on the toilet! ¬†He went himself, he didn’t ask for help; he just did it. ¬† I was sat on the bed waiting for him and could here the canny little rabbit drops and I felt really proud, he’s 6 in July and I had visions of it never happening to be honest. ¬†It coincides with us buying ¬†him a book that was ¬†recommended it’s called Ready to Go Toilet Time. ¬†They do one for boys and one for girls and i’m so impressed I thought I would share it with you.

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It’s really well put together in a hardback folder. ¬†It comes with a hardback book, a toilet training guide, 2 sticker charts and some stickers. ¬†It’s neatly packaged and really well designed.

I’ve read through it a few times with Reilly and he likes the fact that there are pictures of toilets and underpants. One of the posters is a dinosaur which you fill in his spots with stickers, filling up nicely as this is no problem for Reilly and the other is of a train, yes it only has one sticker but I chose the train for number twos because I see that as more of a journey. Its called the poo poo choo choo if you are interested.

These books aren’t special needs specific and would help with anyone struggling or just starting out toilet training. Defo worth a shot if you are nearing growing out¬†of the 6+ pampers.

You can buy here:

Tea & sympathy

Today I had to go to Reilly’s school for a catch up with his teacher and other parents of children new to Benton Dene School. ¬†I wasn’t sure I could actually keep my eyes open to get there after he was awake between 1am – 6.30am Monday night followed by an up at 4am last night. ¬†I look like a dementor.

Aim of this afternoon was to drink tea and talk to other parents. ¬†One thing for sure when you put a room full of parents of autistic children together theres not going to be any awkward silences that’s for sure. ¬†Looking around the room it was a sea of nodding in agreement as we shared similar stories of meltdowns, no sleep and the rest of the issues that keep us on our toes.

Reilly as I expected is doing extremely well. ¬†He is communicating brilliantly with his pecs boards and super comfortable in his new surroundings. ¬†His transition from Beacon Hill to Benton Dene has been nowhere near as traumatic as I anticipated. ¬†Luckily (I’ve had no replies to any of my issues) for North Tyneside Council he also loves his new transport and waits for the mini bus at the window every morning.

Obviously when it came to my time to speak I hardly came up for air, Alphabetically Autistic, The Life of Reilly blog & play, Really Reilly, grandparents sessions (lots of extremely good feedback re this) and the likes.

Just hammered home the fact that what we are doing is necessary and needed and made me proud to know I had a part in it. ¬†I opted not to bring Reilly home with me and to leave him to come home on the school transport. ¬†30 minutes to myself, alone you say, I’ll take that.

We have been to collect our registration certificate for Alphabetically Autistic today too so all round a productive and satisfying day.  Praying for sleep x

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Social Butterfly

Great afternoon with Reilly today.  Im seeing such an improvement in his social skills.  Not that long ago he would growl like a lion at anyone daring to glance in his direction.

Out the taxi from school and straight into my across the road neighbour’s for a look upstairs, play in the conservatory and help with the hoovering. ¬†It’s a good job they read this blog and understand¬†lol.

Working out how much I had in my purse and whether I could handle the bus stop shenanigans today I decided I would¬†go visit my friends the Travelling Willbury’s Clare & Dave in their new home in the next estate, (had no idea what number but had seen a photo so just thought we would wing it, would just blame Reilly for ringing the wrong doorbell).

Their son Hadyn is just a few months younger than Reilly and their last encounter saw Reilly lock him in our conservatory. ¬†Not today though Reilly was super social, playing with toys, holding Hadyn’s hand, by choice and leading him around the house looking for mischief – absolutely brilliant to see. ¬†I only saw a flicker of a reaction to Dave’s cough and he moved on. ¬†He also asked for Dave’s hand to go upstairs.

Massive improvements from my little man! ¬† Hadyn was a little unsure at first when Reilly didn’t reply to any of his questions¬†but this didn’t deter him¬†and I quote:

Because Reilly hasn’t found his voice yet he can share his. ¬†

Trust me he has plenty to go round so i’m happy to take the spares lol. ¬†The featured image for this post is them as littlies, ¬†still makes me laugh years on.

Children are so inquisitive about Reilly.  We really need to get to work with Really Reilly and get it into primary schools as soon as possible.

It’s amazing to see Reilly interacting for years he stood on the sidelines and just kept himself to himself. ¬†But I see a different Reilly emerging.

Currently in bed in full uniform and shoes watching Thomas.  Life of Reilly that lad!

 

 

We need you!

I’m really excited this week as the plans move forward for Alphabetically Autistic. ¬†We are now an official social enterprise. ¬†A lot of people have asked me what a social enterprise is and for me the easiest way to describe it is ‘we work – society benefits’. ¬†Simple as that. ¬†It’s like getting paid to do good deeds. ¬†It’s a place to channel energy into your passion for change. So for the first time in my life i’m a director! and it’s not director of hideous luck or director of cheap shoes.

Have you ever bought the Big Issue? Read it over a bar of Divine chocolate with a cup of Cafe Direct coffee? Watched Jamie Oliver’s Fifteen? Visited the Eden Project? Shopped at the Co-op? 

Well, then you already know a bit about social enterprises: businesses that are changing the world for the better.¬†Social enterprises are in our communities and on our high streets ‚Äď from coffee shops and cinemas, to pubs and leisure centres, banks and bus companies.

Social enterprises trade to tackle social problems, improve communities, people’s life chances, or the environment. They make their money from selling goods and services in the open market, but they reinvest their profits back into the business or the local community. And so when they profit, society profits.  www.socialenterprise.org.uk

We will educate in schools via our Theatre of Education and short films, hold practical autism awareness sessions with guest speakers from the autistic community, The Life of Reilly stage play, counseling for people on the spectrum and their families,  business awareness sessions and also sell some great products.  We are developing ideas constantly to generally raise the bar with acceptance and understanding of autism.

Why a social enterprise? ¬†Holding and keeping a job is so difficult with an autistic child. ¬†Reilly has only just been full time in the last year but no morning is ever the same. If I had to clock in at 8.30am every morning I can guarantee it wouldn’t happen and¬† I need a job, really really need a job. Why not channel all the ideas that fly around in my wide awake head at 4am and make a difference with the added bonus of paying the mortgage and profits reinvested to further our cause. ¬†I know my fellow directors¬†¬†feel the same. ¬†I give a lot¬†of my time (unpaid) to mine and Kelly’s charity North East Hearts with Goals and I have 3 children one of which you know really well, the human whirlwind that is Reilly. ¬†Future plans do I think Reilly will ever work and live independently? ¬†I really don’t know and that’s why I need to work now and try and have everything in place for him.

To make Alphabetically Autistic work we need your help.  As a social enterprise we can fundraise to carry out these activities we can also apply for grants.  To make this dream a reality we must raise enough funds to actually start up for practical things.  Marketing materials etc.

That’s where you come in.

Crowdfunding for Really Reilly is a platform for community projects to achieve their aims.  We have a page to get Really Reilly into schools as soon as possible.  These performances will enable knowledge to flow naturally outside of school to local parks etc where autistic children are often mocked.

If you live locally and want to support us come along to our Rocking the Spectrum night.  Guaranteed to be a great night and help us get kickstarted.

tickets available here

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Please get behind us and make this happen. Come to our events, book into our sessions when we release them and share our work  xx

Back to school!

All that stress, no sleep, felt sick since 5am and what does he do?

Would you believe me if I said he got up at 7am, ate his breakfast, put on his uniform including polo shirt which is very rare,drank his milk and watched the Octonauts until his taxi arrived.

When it did arrive he jumped straight in and fastened his seatbelt and left without a care in the world.

I am not silly enough to think that this is it. ¬†This is one morning, we have a full day and a return journey to tackle yet but my god i’ll take that this morning. ¬†My friend Sarah also dropping a little one off this morning said he was in the sensory swing when she left and as happy as Larry. ¬†Got the Life of Reilly this one.

Right Poldark series 2 episode 1 i’m coming for you!

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The nightmare before school

Normally on back to school eve I can be heard singing “It’s the most wonderful¬†time of the year”. ¬†Not tonight however. ¬†I’m a mixed bag of emotions. ¬†First day back at school for me this year is huge. ¬†Not only is Reilly changing schools he also changes drivers and escort. ¬†For a little fella with autism this is massive.

I feel scared, nervous, excited, free, miserable, happy and tired all in one. ¬†I won’t sleep tonight even if Reilly does. ¬†There will be thousands of us the same. ¬†We’ve had the PECS out showing Reilly back to school, the new uniform is out, his new coat has been casually hanging about the house so he’s used to it ready for tomorrow. ¬†School shoes exactly the same as last terms but 1 size bigger. ¬†School bag exactly the same. Thomas and Friends.

He hasn’t met his driver or escort to say i’m unhappy about this is a massive understatement. ¬†Will he get in the car tomorrow? who knows. My email has gone off to the council none the less and will probably turn into a blog post all of it’s own as school transport is a huge issue for me. ¬†Every driver and escort should be introduced to the parents and child before first day of school. ¬†Do they have autism awareness and experience? ¬†I don’t know but if I’m not happy tomorrow he won’t be getting in.

Will he hate it? Will he cope? ¬†I don’t know he can’t talk. Imagine that.

Just awful. ¬†I remember feeling like this on his first day of school last year and it worked out just fine so i’m keeping everything crossed he transitions well. ¬†I’m prepared for a rollercoaster regardless.

If you see a new school ‘Mombie’ tomorrow, you’ll recognise them look like death through lasck of sleep, black eyes, hair unbrushed, constantly checking their phone and paying no attention whatsoever to anything you have to say. Spare them a thought, go easy on them at work, make¬†them a cuppa and be kind. ¬†It’s harder than you think.

And good luck to all the fabulous SEN teachers and assistants who do such a tremendous job.

I wrote a little poem to lighten my mood after having a good cry at The Good Dinosaur tonight.  I know Рpathetic.

#prayforchristine

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