Trolley & dolly 

As promised I said I would update on the situation with Manor Walks.  North East Autism Society (NEAS) were in the centre this week and delivered autism training to representatives from New Look, O’Briens, Management, parking and security.

I also met its Sarah from Manor Walks and listened to plans for an awareness day throughout Manor Walks to provide shoppers with valuable information about autism and how they can help.   Lesley Cole from Autism Northumberland will help them facilitate this and I think it’s a great first step for some shoppers to gain some much needed understanding.

We also discussed the autism friendly shopping times and a quiet area when things are just too much.

I put forward the idea about the shopping trollies for larger children.  I decided to test the one in Asda out tonight with Reilly.  Why I do this to myself when I’ve been up since 3.30am I’ll never know 😁


As you can see he’s thrilled to be in there 🙈. It was really difficult to push and a spot of WD40 wouldn’t go a miss.  The basket at the front is really quite small so no weekly shops with this one.  If however Reilly had an iPad or similar I think he would have sat quite nicely, the seat is huge.   He had bigger fish to fry today though with the lure of the kinder egg stand and wanted OUT ASAP.  There were a few Judge Judys who had a good stare at Reilly in the new trolley but as always I completely ignored it, 3 stares though and I’ll clip your ankles with it.


We received £100 of vouchers from the security firm by way of apology for the situation with the security guard and tonight he bagged himself a dolly with a bath, a crane, a rapunzel play dough set and a paw patrol action dog .  No gender discrimation with Reilly’s toys.  So no complaints from him tonight fingers, legs and toes crossed for an early night.

Onwards & upwards for an easier life ❤

Autism Northumberland Facebook

North East Autism Society Facebook

 

The lion and the giraffe


Reilly has decided over the last few weeks he will simply not tolerate a nappy unless it has a lion on it.  He wears pampers nappies that come in 2 designs in each pack, one is a lion the other is a giraffe.
I cannot see anything offensive about the giraffe but it sure as hell isn’t going near Reillys butt.  He hides them, puts them in the bin, in the tumble dryer etc.  If he wakes up and I’ve had the audacity to sneak one on him while he’s asleep he removes it pronto and throws it across the floor.


This has resulted in a huge stockpile of 6+ pampers giraffes.  Anyone fancy a swop I’ll do two giraffes for one lion?

You’ve got to laugh.  😩

I am jealous. There I said it. 

This post has done the rounds a lot in the last 2 years about how jealous I was of everyday things.  Ive just read through them again and felt I needed to update them (in brackets and bold).  Amazing how your outlook can change, i’m always learning.  I love this boy to bits.

I’m jealous. There I said it.

I’m jealous of other families that don’t struggle like we do – I am jealous, I’m not proud of it. I am a green eyed monster. There are lots of things that make me jealous things that you probably haven’t given a thought to.

  • I’m jealous that you can go food shopping with your child and not have to dump your trolley and get them out because muller have changed their packaging or an unexpected tannoy announcement causes a meltdown. (2017 edit – I hate shopping anyway, online is the way to go).
  • (2018 edit – shopping is pants, still)
  • I’m jealous that your child wants to put carrots out for Rudolf, watch Elf and get excited at Christmas.
  • (2017 edit – Tricky one.  I think I miss tradition. Alex and Ellis are too old and I miss it.  Reilly does not. Me me me lol.  I still watch Elf, I still put the carrots out, the reindeer dust might land on top of the wheely bin but who honestly gives a f”ck?) Santa still gets here.
  • (2018 edit – haha! Up yours Reilly is loving it! We’ve got a plate for mince pies, he’s bought his carrots and we are having it this year!) .
  • I’m jealous you can stroke your child’s hair and take him for a haircut.
  • (2017 edit – I stroke it in his sleep, his hair is long, no biggy).
  • (2018 edit – after his hair tatting like a spaniels and his cutting his fringe his hair is now shorter. I can stroke it slightly more. Me me me).
  • I’m jealous that going on holiday for us means 6 months of displaying photographs as social stories of aeroplane steps, engines, seat belts and still having no clue whether he understands it all or not.
  • (2017 edit – there are worse things I could be doing at least we are doing it).
  • (2018 edit – been and talked to the airport about becoming more user friendly with ideas in the pipeline. We look at holidays daily on the internet and trust me no prep is required he loves it).
  • I’m jealous that your child does the actions to Incey wincey spider and sings along.
  • (2017 – never liked nursery rhymes anyway, usually creepy full of stories of wronguns).
  • (2018 edit – nursery rhymes are still crap and Reilly says moo and meows on old MacDonald’s farm. That’s enough for me).
  • I’m jealous you go to bed and sleep for more than four hours.
  • (2017 edit – Melatonin saved my life, true story). 
  • (2018 edit – melatonin continues to keep me and Reilly on an even keel).
  • I’m jealous that you can give your child food that is not just coloured beige.
  • (2017 edit – beige is nice, beige is popular).
  • (2018 edit – he now eats pizza and the yellow bits off haribo eggs, he’s healthy, it’s no biggy).
  • Im jealous of your play dates.
  • ( 2017 edit – sometimes – but I like it just me and him)
  • (2018 edit – still like our own company, our rules, our way, we leave when we want).

  • I’m jealous of family trips to the cinema. (2017 edit – £50 for a family trip and counting – you can keep it!)
  • 4 attempts at Peter Rabbit, still too expensive you can keep it).
  • I’m jealous that when your child is ill you can fix it and know what is wrong or where it hurts.
  • (2017 edit – STILL JEALOUS)
  • (2018 edit – still jealous)
  • I’m jealous that any snippet of spare time I get to spend with my husband is spent discussing worries.
  • (2017 edit – everyone has problems maybe thats what you do to?)
  • (2018 edit – I am a worrier, if it wasn’t Reilly it would be the river in York for my oldest at Uni, bullying for my middle child, health, money list is endless).
  • I’m jealous I don’t have time for friends. (2017 edit – YUP but i’m trying)
  • (2018 edit – must make more effort).
  • I’m jealous that your child can tell you they love you.
  • (2017 edit – He loves me I know it, I just haven’t heard it, he traces my face with the tip of his nose and it says it all).
  • (2018 edit – he signs it to me. I feel this is extra special ❤️

But you know what I am also?

Proud, extremely proud.

Have you any idea how hard it is for him to function in this chaotic world? He has the determination of 10 men, the independence of 20 and the stamina of 100.

I’m proud of every tiny step he takes and celebrate each one. Be it touching a piece of fruit, making a new sound or completing a 300 piece jigsaw!.

I’m proud that he is loving.

I’m proud that he is smart.

I’m proud of how hard he tries.

I have 3 beautiful boys and I am incredibly lucky. There are people wishing they had what we have but just sometimes I just can’t keep that green eyed monster at bay.

(Green eyed monster is kept at bay most days I am happy to update).

I feel sorry for those who don’t have a Reilly in their life, amazing what can change in a year.

Another year down more lessons learned, more understanding of my Reilly.

Diagnosis day

Even though I knew Reilly was autistic I always held onto a tiny thread of hope that he wasn’t   I didn’t want my boy to struggle you see,  I wanted him to be accepted; I wanted his biggest worry to be what was in his packed lunch box.

The day of his diagnosis came in March 2015.  Myself, Shane and Reilly had to attend a meeting with our speech & language therapist and a pediatrician who had never met Reilly before.  This made me a bit nervous how could she diagnose my child in a 2 hour meeting?.

The drive to the centre was awkward.  Reilly kicking off because we were driving down a road that he hadn’t been down before and Shane & I mostly in silence, broken every now and again with a heavy tension filled sigh.

We arrived to cheery faces and a room full of toys, so far so good.  The first part was mostly play based, they played and interacted with Reilly best they could.  We were then questioned about Reilly’s behaviour.  Every answer we gave terrified we’d given the wrong one.  Had we downplayed some of it? probably.  It’s really easy to talk in detail about how great your children are at different tasks.  It is not so easy to talk about things they struggle with and that’s what we had to do. I felt disloyal to Reilly, I felt like I had failed him.

Next we were taken to a small room where Reilly was stripped down to his nappy and a UV light was used to scan him for marks on his skin, they were looking for Tuberous Sclerosis, 50% of children with Tuberous Sclerosis go on to develop ASD.  I had no idea it even existed. It sounded terrifying, life threatening and all I needed to know was that he didn’t have any marks.  He didn’t.

Off we went to wait for them to deliberate and deliver their verdict.  20 minutes felt like 3 hours with constant anxiety and on the edge of a full-blown panic attack.

As we took our seats back in the pediatricians office where there was no beating around the bush, she was direct and she was honest.  Reilly was autistic.  No more might be, maybe, could be – he was.  Even though I was expecting this it felt like someone was standing on my heart.  I could barely breathe and I wanted to run. I wanted out of the office and back home to this morning with the maybe’s and could be’s.

We talked for a bit about how we felt but to be honest I cannot remember what was said.   We left with a pile of literature on help groups and activity sessions.  Buckled Reilly into his car seat as we always did and sat in silence for a bit.  I wanted to throw up, I had the shakes and I know Shane felt exactly the same.  The fear was real, I cannot stress that enough because it is genuine fear of the unknown.  NOBODY wants their child to struggle, they want the norm because its easier; they go to the local school around the corner for nursery and leave to go to high school at the end of year 6, they make lifelong friends; the same.

We came home and told his brothers of his diagnosis.  It made no difference to them whatsoever.  They already knew.   Everybody knew.

I should mention prior to this meeting reports were submitted to help with his diagnosis by his nursery, health visitor, speech & language, education psychologists, health visitors and portage. All unanimous in their verdict.  It took approximately 2 years to get it and the equivalent of the encyclopedia britannica in paperwork.  We are lucky, some families are fighting to get a diagnosis years down the line, it can feel like looking for the holy grail at times.   It is hard and in most cases you must fight for help every step of the way, be vocal and keep at them. If you don’t shout you won’t be heard.

So that’s it. That was diagnosis day.  It threw a major curve ball but it has opened a few doors for us and enabled us to sketch plans for Reilly’s education.

The best piece of advice we had was from my sister in law Kelly who I quote “Is he going to die from it? No crack on then there are others in worse positions” and she was right. He’s incredible.

 He is funny. He is super bright and he is autistic.  He is Reilly and we love him.IMG_6335