Love needs no words just paws

How rude!  I put up a go fund me account for an autism service dog and then disappear for 24 hours!  Myself and Reilly have been KO’d by a sickness bug.  He’s better now and back at school but it still has me so my apologies.  This will explain his horrific behaviour of the last few days he just couldn’t tell us, breaks my heart!

As the blog approaches 40k views I feel confident that we may have made a difference in how others perceive autism but now I really need your help.  I am overwhelmed by the response to the fund so far not even 48 hours in and we are halfway there, I have had donations from all over the world, donations from people I have never met and donations from my oldest friends and I am truly grateful.

Why do we want a service dog for Reilly?

Basically I am terrified for his safety.  He bolts constantly, he’s a slippery as an eel and nearly impossible to keep hold of.  When he does runaway I have to carry him back as he will not walk and he’s getting so much bigger and heavier I really struggle.  Reilly will often act impulsively and has literally no fear of traffic etc. A service dog will keep him grounded/safe.  The dogs are trained to sit like an anchor if Reilly tries to flee.

One boy and his dog blog post was an incredible experience to watch the interaction between Reilly and his protector for the afternoon if anyone needs a reminder.

A service dog becomes a true companion who is always there for Reilly. Their  bond will help with self-esteem and many social situations that are currently very stressful for Reilly and us as a family.  I often cop out of some situations because I just don’t have the strength to deal with them.  I don’t want that.

With a service dog I see light at the end of the tunnel.  Some days when things are really bad like my last blog I cracked, I cried!. I can’t see it.  I wallow in a kind of self pitying state of oh my life is too hard I can’t even go to the shop for a loaf of bread because it will take 2 hours and Ill probably have to carry him back and I’m too tired etc etc.  The thoughts of having a service dog has given me a little bit of hope (god knows we all need some of that) that maybe we can cope and function better as a family with a furry friend in tow.

After reading up and doing some research I decided to give Carol & Niel a call from Appaws for Autism a charity based in Scotland to really understand how the whole process works.  After some long phone calls with them I am certain this is the best thing  we can do for Reilly.  He needs this.  We need this.

This video I have attached is so much like myself and Reilly. I cried watching it you probably will too but you can get a greater understanding of the comfort a service dog can bring.

If we reach the target I will blog every step of the way in hopes of helping others who need service dogs too.

If you can donate please do if you can’t no problem please share🙂

 GO FUND ME – AUTISM SERVICE DOG FOR REILLY

 

I cracked, I cried!

Last  2 days have been horrific and today it all kind of got on top of me and I had to have a little cry.  I feel better for it and I should do it more often.

Yesterday was a nightmare.  For some reason he wasn’t happy with any of the clothes I tried to leave in the house in.  Might sound really trivial but when I don’t know why and it’s clothes I’ve work before I’m buggered if I can work it out.  He will not stop until said article is in the bin.  He screams constantly and rages until it’s done.  I managed to get into the car in one jumper and before we got off the drive 15 minutes later it was thrown out of the window.  Anyone else have any issues like this?  I could say sensory but he’s seen these before.  He wanted me to go because he took my hand just not in those clothes.  Anyway we swerved going to our friends Lou & Steve who quite frankly have enough on their plate being fabulous and running the super amazing The Good Will Cause and I really didn’t want to subject them to Reilly’s current mood.  We went to Blyth Park instead where after 15 minutes Reilly lost the use of all his limbs again but not his vocal chords.

Back home he did a runner again to our friends around the corner and was calm for a little while, he did try to overthrow plates and the likes.  I was praying for bed time by the time we got home for the second time but he was still bouncing on the bed at 10pm.

So as you can imagine I sadly waved him off for school this morning (cough cough Poldark was on by 8.03am with a cuppa in hand).  I felt better, I’d slept, we had good news about Alphabetically Autistic so all good – until 3.30pm.

I bribed Reilly into the house with the marble madness set I picked up that morning for that very reason, a lure.  Get him through the front door and lock it.  This is all well and good until you realise he’s worked out how to get out the back gate and he was off. Running in the rain like Mo Farrah. I’m chasing him like theres a sale at McDonald’s, gasping for breath and expecting someone to have to use one of our defibrillators (I need to sort this out for Reilly’s own safety and my health).  Little pal Hadyn wasn’t at home so this didn’t particularly improve his mood and he was off again.  I’d no coat, it’s pouring, i’m soaked and I’m struggling to catch him.  As per there’s no response to shouts to stop etc so one last push from me and I caught his hood.  Queue the Reilly now won’t walk scenario so onto my back like Hodor and Bran I traipse home like I’d just wandered out of the eye of the storm.

Breaking cups,plates, kicking over his marble madness, pulling my hair, kicking the doors, pulling wires from the TV and that was it. I sobbed for a good 15 minutes.  Noisy real tears type of sobbing.

Reilly stopped destroying the house and came and looked at me.  Then he began piecing back together my magazine that he’d destroyed placing them on my knee like a peace offering.

Can’t read emotion?  I beg to differ.

Of course after a 20 minute cuddle from Reilly still in his peace offering mood I began to feel better. We snuggled and watched Thomas, me still complete with that hollow, dreaded fear you have at the end of a panic attack with the added guilt trip that you have when you doubt your ability as a mother.  I forget sometimes that it’s ok to be pissed off, have a little cry, reign it back in and crack on – This too shall pass.

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Calm has now been fully restored, Shane is home, Reilly’s in bed and i’m hoping for a better tomorrow.

Parents of multiple ASD kids you have my admiration and respect, how on earth do you do it? xx

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Meltdown matters

Ive talked about meltdowns before but just to make sure you fully understand and get it I thought I’d be a bit more descriptive so here goes mainly because tonight has been shit and difficult.

This would be a typical visit to the shopping centre and I cough unexpectedly for example while he’s pre-meltstrual.

Stage 1 – Pre-meltstrual  

This is bit where Reilly is just starting to show signs he’s not happy.  He becomes disinterested in EVERYTHING and growls at me and others.

Must be watched carefully for knocking things of shelves can’t afford to start bartering over breakages got to move fast.

Stage 2 – Can’t touch this

As if by magic he turns into a slippery little eel and its near impossible to keep hold of his hand, hood, arm, trousers etc.  For his own safety obviously you must hang on like a rodeo cowboy, he will run in front of cars, people, get on a bus (this has happened) and I usually drop bags, money, bank cards etc in the process.  My temperature raises by a couple of degrees and I need to get my coat off.  I have said in my head FFS a few times already.

Stage 3 – Puppet on a string

Trying to transport a child from A – B when their legs aren’t working is hard.  Especially now you’ve added your coat  to the list of things you are carrying.  It’s like someones put a Tom and Jerry magnet in his pocket and its attracted to the floor.

I take this opportunity for a breather and stand over him like the Colossus of Rhodes.  It’s at this point I will notice the first stream of tutters, judgmental bastards who’ve never done anything wrong in their lives nor have their kids or grandkids.  Angels.  They sweep past watching you over their shoulder while discussing with their friend how shit you must be as a mother. Up yours.

Stage 4 – Shaddap your face

Reilly can’t talk as you know but I bet he could smash a glass with his wailing – like a banshee.  Red faced, snotty and sweaty still on the floor.   Queue more admiring glances from passers by with the odd ‘smack his arse” comment just audible above the racket.  These people sometimes get shown the middle finger or quite simply told to fuck off or I will smack you.  I’m usually on the verge of a panic attack by this point.

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Stage 5 – I can’t stand up for falling down

Ive accepted that we cannot stand here all day, i’ve mastered my bitch face and i’m moving him out of there by any means necessary.  Over the shoulder would be good but he’s getting too heavy.  So I stand him up, he crumples back to the floor making sure he hurts his knees and hands in the process and we do this until we get outside, up and down like a little angry frog.  People should know at this point that catching my glance will equal Medusa’s stare and they’d be wise to jog on.

Sometimes at this point I will clock someone who knows, someone who’s been there and they give me that understanding Deidre Barlow face and it lifts my spirits momentarily.  Enough to get to a place to regain some composure and carry on with our day.

This meltdown cannot be bought off with a new toy, an ice cream or a trip to Disneyland Paris. It can last upto an hour and they are exhausting for us both.  There is no negotiating and I do not know if my cough feels like nails across a blackboard or thorns sticking in his ears.  It’s tragic and stressful, it’s really really stressful and I hate it.  I hate myself for losing my cool with him (not always but I am human) I do not hate myself for swearing at Judge Judys,  to avoid my wrath  don’t stare at us, don’t comment, don’t judge.  It’s hard enough.

Get me a taxi or a diazepam or preferably both and I’ll be forever grateful. 

 

 

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!

 

 

Reilly’s big day out!

After a stressful morning playing Columbo and not much sleep we decided to make hay while the sunshines and pay a visit to Exhibition Park in Newcastle with Reilly.  I was astonished to find that when we turned into the same road that houses the RVI hospital Reilly didn’t get anxious.  Usually approaching this part of Newcastle City centre he has a wobble.  Obviously a throwback to his treatment there a couple of years back.   We also met some great people in terms of autism understanding.

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He loves watching the skateboarders icecream in hand, me not so much.  I fell off one when I was 30 trying to be a cool Mam and broke my leg in 4 places so I ushered him past quite quickly, I don’t mind him sitting on one in our living room but thats as far as it goes.

I love Exhibition Park filled with people lying around sunbathing and eating picnics and Reilly thoroughly enjoyed playing in the park, walking round the lake and a quick nosey inside the Wylam Brewery the young lady behind the bar was fab with him sat at his barstool when we explained we were just in to settle Reilly’s curiosity.  Ill be back though minus kids because it looks tremendous! The food, the drinks – everything!
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Next we went to the Hancock Museum.  I was a bit scared i’m not going to lie.  I swerve places where a scene is inevitable but it was literally 10 steps away and we thought we would give it a try.  The lady on the desk told us that there are autism sessions where they open early and its not so loud etc and passed on the details for the lady to arrange attending, I like that, I like inclusion.  I want him to see T-Rex bones and pieces of ancient Egypt it’s part of childhood!

Unfortunately he had one favourite place in the museum, my least favourite place and I had to sit next to them for too long.  He loved the snakes!!  

All I could see was Harry Potter bricking it once the glass smashed! god I hope he’s not fluent in Parseltongue.  I already resemble Snape on most days I can do without any other similarities.  I’m in Gryffindor all day never a Slytherin. 

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He loved it and stayed way longer than we anticipated.  Homebound and a stop in at Sainsbury’s at Gosforth where it was no problem for Reilly to continually put his card in the card reader and the lady behind the counter couldn’t have been nicer.  Success.

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Great day out.

Home, naked, watching Thomas and bouncing on the bed for the rest of the afternoon (Reilly not me). Hoping for an early night and a shirtless Poldark.

Loved today more like this please.

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Grandparent’s only! WE NEED HELP!

As we see things starting to come together with Alphabetically Autistic this is one of the things I’ve felt most passionate about from day one.

There is nothing my mam and dad won’t do  for my children and my nephews.  They have always babysat for them, had them over night, took them to Disneyland Paris and the likes.  Usual grandparent stuff that makes our lives as parents that bit easier.  So it’s hard for me to see them struggle with Reilly.  My dad certainly gets stuck in and has a go but there is no denying it is difficult.  My mam feels helpless that she’s actually afraid to take him out alone a) he does a runner most of the time and b) I struggle with his meltdowns at 43 never mind 70.

As much as they listen to me about autism I don’t think anyone really gets it unless you live it 24/7.  We as parents sometimes withhold things that happen within our four walls to save them from worry, stress with relationships, money, lack of sleep, depression, anxiety etc.  We bite our tongues regularly at advice given with the best intentions.  We are tired, anxious and sharp sometimes, most of the time to be honest which is often mistaken for ungrateful, antisocial and rude.

I want them to feel more able to understand Reilly.  To not take things personally, to understand how they can help.  Grandparents play a crucial role in keeping the unit functioning well.  Without those little breaks I get when my dad takes Reilly on a bus journey or to Mcdonalds I am honestly screwed.

They also need support and can find a diagnosis difficult.  I always find comfort with people who know what I am going or have been through and I think this session on autism and the chance to converse with others is essential.  It’s informal and it’s free!

If you would like to book on or book your parent’s on please email alphaautistic@gmail.com

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