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 – that 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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Is it Monday yet? 

This week gets a big fat 👎🏻 thumbs down from me. Reilly has had man flu and been off school, I’ve had a sore ear so we’ve basically watched the same episode of Thomas and Friends 200 times.  Reilly has been stuck to me like a koala on a tree. 

I did manage to sneak out on Friday to a SEN Day arranged by The Dales School at the Port of Blyth where I thoroughly enjoyed talking to all the other SEN charities/provisions. I learned a lot from the day and attended a session with North Tyneside and Northumberland Mind about mental health and the stigma that surrounds it. As most will know from my last blog I’ve had my ups and downs recently but it’s important to remember it’s ok to not be ok.  This life is damn stressful.

After the day we’ve had today I’m currently reminding myself of this fact.  Reilly is feeling better so myself, Shane, Ellis and Reilly headed out but regardless of what turn in the road we made it wasn’t the right one.  Myself and Ellis ended up going our own ways while Shane drive Reilly to different landmarks in South Northumberland to be met with the screech of a banshee and refusal to get out the car. 

There was light at the end of the tunnel though Grandad Ken had offered his services for us to go out for tea, just Shane and I. Happy days couldn’t go too far though as the clock is ticking as soon as Reilly leaves so we just headed up the road to a local restaurant. Love these 2 hour snippets of alone time, adult conversation and good food puts my sane-ometer up a couple of notches.   We were summoned enroute home to ‘rescue’ my Dad and Reilly at Cramlington where Reilly had been incredibly hard work and we deemed it was best to just get him in the car and deal with at home.  

Lots of screaming, a carried out under the arm from the co-op and an attempted escape from the car at McDonalds drive through later we were home. He stamped on his chicken nuggets and chips  til they were unrecognisable.  He screamed for a further one hour.  I’m not sure if you can appreciate how long that is until you are actually faced with it. Full on red faced, can’t breathe screaming.  Luckily I can kind of tune out. 

While I went on my merry way picking up chips and scraping chicken nuggets off the floor while talking to Reilly in my calm voice which was teetering dangerously close to a mammys losing her shit voice and a thwarted escape out the toilet window (it is now and shall forever be LOCKED) later and it’s starting to subside, still sounds like we are breeding pterodactyls at number 6 with intermittent shrieks out the letterbox.

Eventually coaxed upstairs he lay on the bed and attacked like a Yorkshire terrier every time I went for a shoe or a button so I let him be, switched on faithful Thomas takes charge and lay down beside him. 20 minutes later his little hands reached up for my face for a cuddle. The storm has passed and all is good again but by Christ my nerves are on edge. He’s asleep now and looks like a cherub still sweaty from his outburst.  He’s got a party to go to tomorrow and I’m taking my video along, I predict lots of fun and running cough cough.

Ps his goody bag came from Jet2 and had a plane in it. Was like xmas all over again. 

Dark clouds gather

You ever have one of those days where you wake up and you can barely get out the bedroom because your anxiety is up with the larks? That was me this morning. 

I hate those days, I’m partial to them I can’t lie.  Days when you are happy your phone is broken  and that you have no plans because getting out of your pyjamas takes more effort than what you’ve got. 

I hate anxious depressed days such a massive waste of time and energy spent ruminating over everything. Everything being the important stuff like 10 reasons why it is absolutely impossible for me to die as no one can take care of the Things like I can but also worrying about utter drivel. I hate that the most for example the tiles on the outer edge are missing in the hallway Reilly’s escort will think we live in squalor, WTF but yes that was a genuine worry of the day.  I knew I couldn’t watch the documentary about the 16 year old non verbal boy today as I may still be crying now that needs to be watched on a less emotional day.

I’ve spent the day trying keep as busy as possible. My self preservation involves being busy with minimal human contact and watching old America’s next top models that I’ve missed. So here I am at almost 1am feeling completely normal and wanting to hang onto that peaceful feeling so putting off sleep a teeny bit longer.  

When Reilly came back from school he wanted to go out, I really really didn’t want to but I put my trainers on and figured some fresh might do me some good so we went to the park and for something to eat.  It does always brighten me up if I can get past the doorstep.  In this mood I’m prone to a bit of people hating, can’t help it for example I hated a mam shouting at her little one for walking too slow, I shouldn’t judge she may have needed the toilet or was catching a bus or whatever but I did and hated her for it anyway. 

My temples were pounding, my left arm was pins and needles and my legs like lead weights but I did the 2 hours out and I did feel better for it.  The good thing is I can say to Shane what an utterly shit day, I felt like crying and have been really anxious and he gets it, priceless.

The black dog barks at my door a lot and I do try and keep him on a tight leash.  Medication, mindfulness, etc help too. I’m 44 in a few weeks time and have felt like this for about 20 years off and on some times worse than others following life events.  Caring for Reilly ups the game on the anxiety stakes that’s for sure.  

I get so pissed off, I accomplish a lot but what would the Christine minus anxiety, depression and OCD be capable of?  It’s exhausting but as they say without darkness we’d never see the stars. 

What’s your method for dealing with the dark days?

New day tomorrow hoping for a good one x

Woodhorn Colliery 

Yesterday myself, Kelly and Alison have been as Alphabetically Autistic to the lovely Woodhorn Colliery.  We were invited along to give the staff from the Museums & Archives Northumberland an insight into autism from a parents perspective.

For more than 80 years Woodhorn was a coal mine. Work to sink the first shaft began in 1894 and the first coal was brought to the surface in 1898. its peak almost 2,000 men worked at the pit and 600,000 tons of coal was produced each year. Production stopped in 1981 but the shafts continued to be used for neighbouring Ashington Colliery until 1986.

It began its life as a museum in 1989 and following major redevelopment, reopened in October 2006. Today, the yellow Ashington brick buildings have protected, listed status. The site is recognised as a Scheduled Ancient Monument and it is the best surviving example of a late 19th/early 20th century colliery in the North East tradition.

I really struggle taking Reilly out and about as readers of the blog  will already know from previous blog posts.  It’s always stressful when people just don’t get it.  We feel judged and are often tutted at and deemed hopeless parents by those who aren’t in the know.

I love love love the fact that places like Woodhorn want to learn more about autism and how well we were received. They already do an awesome job and have gone above and beyond with Alison’s son Jay in the past and they have had him in as a tester for their brilliant Brick Dinos event. 


They already have an excellent website but we gave some more suggestions on how to make it more autism friendly as we all know it’s all in the planning.  We got a bit excited when we were told about the Star Wars event that will be coming soon! 

I know Reilly is a big fan of the train that runs from Woodhorn. Trains and planes and you are onto a winner with Reilly. 

We would love to do more sessions with attractions and share our knowledge with employers and staff so if you know anyone that may benefit please send them this way ❤ more places to visit with a good understanding of autism the better. 

To learn more about Woodhorn please see http://www.experiencewoodhorn.com

Sew kind

I love nice people so I decided to write a blog about one.  I’ve never even met this lady.

A little while ago Kelly my sister in law commissioned some handmade bears to give all the family as a surprise.  Not just any bears.  These bears were made from my late brothers clothing, his friends and family will recognise one of the patterns in particular.  I love mine.  He sits on the shelf in the living room and I always give him a quick glance.  Reilly loves him too and does occasionally lock him in our bird cage ornament,must be that one visit to the Zoo at the Lakes.

I think it’s a lovely craft and brings a lot of happiness to bereaved families.

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The ladies name is Caroline Chapman and she appears on most streams of social media as Carrie’s Thread Bears.  Since receiving my bear I messaged Caroline to say thank you and stayed in touch ever since.  She loves Reilly’s blogs and I cheer her up with my John Rocha posts, he’s my twin. She is my biggest fan (I think I look like John Rocha and pretend I am in him in various photographs, you have to be there) for example …….

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Bastard freezing and me flint’s knackered.

Anyway today I received a present through the post.  I love it, not just because I like gifts but it’s nice like receiving a written letter instead of a typed one.

Inside the package was this little beautiful tooth fairy cushion for when Reilly starts to lose his teeth.  You put the tooth in the little pocket for safe keeping while under the pillow and replace with a coin or whatever, good news for us parents is the pocket is small good for a pound coin and no fivers!

What a lovely gesture.  Even more lovely that I know she’s been unwell and is supporting her sister through chemo.  Absolute star and i’m super grateful. 

By the way how the hell do we explain losing teeth to our autistic cherubs?  New one for me to read up on I think.

Take a look at some of her great work you’ll be impressed xx

https://www.facebook.com/CarrieThreadBears/

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Brilliant inventions and preventions

This week has been eventful,  lots of good things lots of bad things.

Ill do bad things first:

BAD THINGS

  • Reilly went missing.
  • Almost died while running the streets looking for him (not strictly true but felt like it).
  • Hours spent lying awake beating myself up re Reilly escaping.
  • Nephew has cardiac arrest.
  • Reilly broke my favourite moroccan cup.

WHATTTTTT back it up!  My nephew did indeed have a cardiac arrest on Wednesday night.  We have been kind of prepared because we knew he had an inherited heart condition and he has an ICD fitted as a prevention if cardiac arrest happened but always hoped obviously it would never be needed.  The ICD saved his life on Wednesday.  He’s back home and just fine.  If I  ever needed a wake up call to stop moping and seize the day this was it.

What I find strange is that Reilly’s behaviour was different the day after he escaped and the day after Will’s cardiac arrest.  I think he could read my emotions I really do. Normally he scratching at the door to be out of the house at the first opportunity, kicking off because i’ve had the audacity to take a bite of my toast before he has and the likes.  Nothing. Just watching Thomas, being cute.  It was a godsend because I had very little left in me to deal this week.

Will loves dairy free chocolate if you wanted to send him any as a get well soon I can pass it on. 😉

GOOD THINGS

  • My nephew is still alive.
  • Found Reilly unharmed and unaware of any fuss.
  • Have lost 5lbs since Monday with my new regime and loving it.
  • My neighbours and friends are awesome.
  • Made a green thai curry and it was restaurant standard.
  • Invented some products for Dragons Den.
  • Reilly can write.

The last one has absolutely blown me away, out of the blue Reilly has very carefully started to write.  In my darker days I often think will he read, write etc and I think we have this one nailed.

His favourite words are Reilly, Jet2, Frozen, friends and Argos. (scroll to the bottom to see him in action).

In all my hours lying awake I tried to think of solutions to children running off this is what I came up with:

  1. I decided I would buy a drone and if the little bugger does a runner I can shoot it up into the sky and survey the surrounding areas.
  2. I would  design a retractable leader type thingy but for children and attach it to Reilly while out and about.  Maybe the back of his trousers.  I have a feeling that Peter Jones and Deb Meaden might call me an a-hole and say they’re out but come on middle of the road or a bungee chord I know which one Im going for. (Have found something similar already emailed them for a go).
  3. This is my favourite one. A Stopping Trolley, like a shopping trolley, the tartan kind grandmas have but deeper and when Reilly refuses to walk I can stick him in it with my shopping and he cant’t get out.  Obviously a hole in the top to keek his head through like the top of a tank.  No more tired arms or escaping from pushchairs if you use them. I’m in!

Back to school on Monday 🙂

x

 

Missing 

I’m like a big jittery bag of nerves today.  I’ve had an internal debate with myself whether to write this post or not, mostly for fear of judgement but this is real life and I’ve decided to write it.

Reilly escaped out of our downstairs toilet window yesterday.  We were upstairs with his new board drawing, sticking alphabets on etc.  He wasn’t happy to be at home but we’d already been out and about for hours and I do have another child off school so I needed to be here.  The doors were locked downstairs as always.  Reilly wandered downstairs and I decided to grab the opportunity to go to the toilet, yes this has to be planned too. If he catches me, always me at the toilet he will fly into a rage and scream and often put his feet in the toilet.  I have NO IDEA why. 

I could hear little sounds of Reilly playing, the odd drop of a car etc so I wasn’t worried.  I was a little worried a minute later when I shouted Reilly and didn’t hear a shuffle or his footsteps, then again he doesn’t always respond to his name.  So I shouted again and listened, nothing.  Sorted myself out and ran down the stairs in and out of every room. He wasn’t there. The toilet window however was open as wide as it would go.  My doors are locked, where the fuck are my keys to get out, I’ve hidden them so Reilly can’t get them on top of my wardrobe. Up the stairs, down the stairs, phone isn’t working so I run into the street and see nothing. I bray on my neighbours door to help, Alex my oldest son who was sat with headphones on and never heard a thing started running, I never knew he could move that fast.  

I ran to my friends house, that’s where he would go I was sure of it.  He wasn’t there, they all pulled shoes on as quick as a flash and were out.  I could not breathe.  I suffer from OCD already so can certain conjure up some catastrophes without an actual real situation.  I felt like my legs would give way and my heart would explode.

As we drove back to my street to see if anyone had returned with news, I felt I would die when there was nothing and then our neighbour pulls into the street and tells me he has just tailed Reilly, he was unsure how to approach him and didn’t want to freak him out so followed him to make sure he was safe while trying to contact my Dad to come to him.  Reilly had walked or ran I should say a fair distance and if I was a betting man I’d say he was enroute to McDonalds.  Another lovely lady stopped Reilly and kept him by tying his shoelace until my Dad got to them.  I will be forever grateful to everyone who was involved yesterday.  I love my village and (most) people in it. I’ve been sent tons of phone numbers and others have taken mine to set up a little network in case it ever happens again, which it won’t but with Reilly we can never say never. He is very bright, he will build things to gain extra height, he tries to pick locks and has no sense of danger.

My dad took him rambling from there and he tried to give him the slip 3 times. I think he thinks he’s hilarious but it’s anything but. 

The what-ifs have kept me awake most of the night and will continue to for a long time to come. I’m not a horror, I’m not a bad parent, I’m doing my best here and Jesus it’s hard.  It’s such a rollercoaster one moment depairing at his lack of sense of danger and the next minute I’m in awe of the incredible things he does like this morning writing his name for the first time, completely out of the blue and perfect.


Today Reilly is still hatching plans for a great escape while I google security measures and tagging.  I’ve still got the tell tale anxiety pins and needles running up and down my arms and too much adrenaline coursing my veins and I’m not quite brave enough to venture past the front door, Trolls it is and extra cuddles x