Black & White by Reilly’s Dad

Living in a city where Newcastle United is the heart beat of the city you’d imagine seeing things as black and white would be a good thing right? In a professional capacity I hate grey areas, it’s a recipe for disaster so at times I suppose we all like things to be as simple as black or white.

Add a 4 year old non verbal autistic lad into this world and the world of black or white and no grey areas becomes incredibly difficult and tbh at times unbearable to the point you could scream. Believe me I have screamed and it’s also reduced this 6ft, 16 stone skin head to tears on occasion.

Parenting a non verbal autistic child is tough and stressful doesn’t come close at the moment, on the flip side imagine being a 4 year old with little way of communicating their needs or even worse fears? Imagine now if you would the distress.

Every time Reilly melts down breaks my heart, why? It’s not the tears or the noise as every kid when they are hurt or upset will cry and scream. What breaks my heart is this little boy in front of me is either so anxious, scared, confused or worse still Ill and he can’t tell us and we can’t explain to him like we can with our other kids. Black or white now doesn’t seem as appealing to me; I’d kill for Reilly to have a few grey areas to ease the complicated world he finds himself in.

So sometimes when I think I have had a shitty day at work this little man of ours puts everything into perspective; you might think to yourself I’m fed up of this or that but at least we have the ability to rationalise, reflect and communicate our thoughts and objections.

This non verbal autistic kid doesn’t have these skills sets to ease the anxieties, stresses and make sense of the world they live in; so Black and White anyone? Not me for one I’d take grey any day of the week.

Rubbish

What an absolute stinker  of a day!  Reilly’s behavior today has been just short of horrendous.  Up at 6am which was a bonus as we were allowed to play tents for an hour before actually having to come  downstairs.

The only peace today was when Reilly was eating an ice-cream, rest of the time he was like an angry whirlwind.

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Today he doesn’t want to be anyone’s friend.

  • He has hit Ellis numerous times for coughing.
  • pulled my hair for offering help with Finn McMissile.
  • Thrown my candles and hurricane jars off the shelves.
  • pulled a drainer full of dishes onto our waiting to be tiled kitchen floor which all smashed to smithereens and then proceeded to try and stand on the remains.
  • Flooded the bathroom floor as stupid me didn’t turn the stopcock off when the washer finished.
  • Had  a meltdown for 45 minutes because he couldn’t get the shed door open.
  • Pulled over my recycling bin in protest, scattering bottles everywhere (I don’t drink  by the way but that could change very soon) and sat on the top like the Lion King.
  • Took huge offence at me applying factor 50 plus suncream and covered himself in washing up liquid instead.
  • My dad took pity and ushered me and Shane out for something to eat while Reilly had a snooze but then HAD to phone for us to come back as he had the audacity to try and put on a giraffe instead of a lion.  (If that means nothing read back  on the lion and the giraffe post).
  • He was still crying when we got home to which Shane bundled him in the car with his bucket and spade to the beach.   and breathe.

Shane asked do you want to come with us?  Hang on I’ll just think about that for 0.025 seconds.  NO, no I don’t, drive away quickly and come back when all is calm (preferably 10.30pm and ready for bed 🙂 ).  I have said FFS far too many times today and not even under my breath and I’m no Sweary Mary.

Does that make me a bad mother?  Does it hell.  It’s ok to say your kids get right on your wick sometimes.  I get on his too.

In fact today everyone gets on my wick so here’s to a nicer tomorrow.

Just one of those days.

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Neighbours must think we are absolute scruffs!

 

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.  😩

Oh Brother! Life with a sibling on the spectrum


Reilly has 2 brothers Things 1 & 2. Thing 1 Alex is 19, extremely funny and sometimes cool.  Thing 2 Ellis is 9 also very funny and extremely handsome.  All traits from their Mother, I will take credit.

Reillys autism has a big impact on their lives, more so Thing 2.  He would prefer to spend more time at his grandparents house (5 minutes walk away) than at our home. There are a couple of reasons why:

  1. Little sleep at home.  Huge issue for him as he’s a sleep monster.  Reilly has melatonin but this doesn’t keep him asleep it just helps drift off.  This can result in hours of screaming, playing, lights on and off during the night.
  2. Waited on hand and foot at Grandparents house. I am so busy trying to keep on top of normal things and stopping Reilly escaping, tipping food out, flooding bathrooms, jumping off window sills that the days of “mam can I have a drink” and it appearing 1 minute later are gone.
  3. He does not have to fight for attention.  Sad as that sounds it’s true.
  4. Reillys meltdowns upset him an awful lot. He cries when Reilly cries and it’s absolutely heartbreaking.

I hate it.  I hate that our family unit is so dysfunctional. I miss him even though he is at home a lot he should be there ALL of the time, that’s how it works.  Many, many people have said well MAKE him stay at home and to that I raise my middle finger. We are doing our best and his happiness is paramount. It’ll work itself out soon I have no doubts.


I asked Ellis some questions recently for the blog which I will publish soon but his very first answer shocked me and made me cry.  I said how do you feel about Reillys autism?  I expected him to say, he gets on my nerves, he never sleeps, he’s boring, he doesn’t play with me etc. All things he would have said just 1 year ago.

He actually said:

I feel guilty.  He went on to say I feel guilty that I don’t have autism, I have friends; I like going to the shops – I can talk.

I then got that feeling I get so often when someone is standing on my heart.

Ellis loves Reilly to bits and is very protective.  In the moments when Reilly is up for it he will chase him around our living room, encourage him to get on his back for a horsey and Reilly loves it squeals with excitement.  Little glimpses of how he would love them to play everyday.   Reilly also loves Ellis, not so much at the minute.  Ellis coughed recently and Reilly hasn’t forgiven him for that yet. When Ellis walks in Reilly runs upstairs and hides – this too will pass.

Having an autistic sibling can be really difficult.  Social outings as a family become thin on the ground as there are many scenarios that we avoid like funfairs, cinema etc we have to split and rarely get seen altogether as a family.  So much time is spent discussing Reilly at home with schooling and behaviours it can take over your life.   Reilly likes to disrupt what Ellis is doing we’ve had to put a lock on the inside of his room so Ellis can go in and keep Reilly out!  As much as Reilly can get on Ellis’s wick Ellis understands the difficulties Reilly faces and really does do his best to help him out.

He has no problem in telling people why his brother behaves the ways he does and can’t talk. Every time a new friend comes round I love to hear his explanations. He loves his football and his time with his dad doing that and sometimes Ellis and myself will have a sneaky hotel stay, just local and more importantly just us.  Little things that mean such a lot.

He deserves lots of credit for being so understanding, so loving and so brilliant. He celebrates every bit of progress Reilly makes and he’s proud.   Reilly I’m sure knows that Ellis is his best friend, buddies for life and his protector. Something I expect we’ll see much harder evidence of in the coming years.  God help anyone that messes with this little brother ❤️.
I have just this afternoon found out that the brilliant  Autism Northumberland based in Manor Walks Cramlington are hosting a siblings event for these little guys like Ellis to get together talk, play and be appreciated in May. Brilliant idea and he’ll be attending for sure. 

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Buy My Brother is Autistic

Manor Walks talks

Thought I would do a really quick post about the suggestions for Manor Walks to become autism friendly.  Background is we had a bad experience with a security guard there, we complained and Manor Walks met with me to tell me their plans for a better shopping experience for people with autism and asked for my suggestions. Alongside Lesley Cole who founded Autism Northumberland and the North East Autism Society I’m hopeful for great changes.

The security staff have already has some training around autism which is great. There has been many emails with lots of different ideas of what would work well.

The most popular idea was a calming sensory area within Manor Walks to be used when things just become too much.

An evening where music would be turned off, tannoy announcements an absolute minimum, lighting dropped etc.  Shopping without sensory overload.  Manor Walks are talking to Lesley at Autism Northumberland already about this.

Personally one of the most difficult aspects of shopping with Reilly is stopping him running off, keeping him safe, avoiding meltdowns and finally actually being able to manage carrying the bags.  These shopping trolleys are popping up more often and I think they would be a great introduction. To my knowledge Sainsburys has one as do Asda.  It would be great to see Manor Walks take ownership of more of these trolleys and that they can be used throughout the whole shopping centre.

Changing spaces are so important not just to children with autism to many children and adults with special needs.   Hand dryers are enemy number 1 for Reilly.  As he gets bigger he is becoming increasingly harder to change, he is too big for drop down changing stations and will do a runner minus pants at any given opportunity.  I cannot imagine how carers manage with an older, larger child/adult.  A changing bed would solve many problems for many people. You should NEVER have to change a child/adult on a toilet floor.


Staff awareness not just with security but also within the shops or representatives from each shop.

Parking spaces and timings.

Much more still to be discussed but thought I’d just let you know there is progress and what the most popular suggestions are.

I’m looking forward to a catch up with Manor Walks and Autism Northumberland very soon. Please continue to send your suggestions.

Important talks with Manor Walks

 A few weeks back my family had an unpleasant, upsetting experience at our local shopping centre. I’ll keep it short – Reilly had a meltdown in Asda and my husband took him out, he bolted through the centre to the other side. A security guard then wouldn’t allow them back through to myself and thing 2 even though my husband explained Reilly had autism and was overwhelmed. The guard was completely unsympathetic, the air turned blue and my husband had to walk right around the outside of the shopping centre carry Reilly at night with cars, lights, noises, darkness etc and it’s a fair distance to boot too so you can imagine the state of Reilly and dad by the time we were reunited.  I got home and eventually calmed Reilly’s meltdown after 45 minutes. Thing 2 left to sleep at Grandmas as he gets upset at Reilly being upset and can’t bare to watch.

I settled myself down with a cup of tea and had a Facebook rant, a huge one. I was extremely angry.  This opened a private dialogue with Sarah Turnbull at Manor Walks and I was invited along to talk to Bruno – Manor Walks Manager, Ian – Security Manager and Sarah to discuss what had happened. I attended that meeting today with my sister in law Kelly, moral support and she’s well versed on autism.

I was thrilled to find out they’d already begun staff training to recognise and understand what autism is with the North East Autism Society and were genuinely very keen to make amends, were very apologetic, absolutely mortified at the lack of humility shown and importantly they also invited me to become an ambassador to work with them to improve shopping at Manor Walks for people with autism and their parents and carers. I say people because this is not just about children. Autistic children become autistic adults at the end of the day and are still affected by sensory issues and the same judgemental glares that us parents are subjected to by other shoppers. The ultimate aim is for Manor Walks to reach the North East Autism Society’s charter standard and meet all their criteria to become autism friendly.

  
I will put 100% into working with them to make visiting Manor Walks less stressful. We decided immediately on an autism awareness day right through the centre aimed at educating shoppers and staff of the issues surrounding autism, we all know a little understanding goes a long way.   A shopping event was discussed too with lights low, music off, autism aware staff on duty etc I know this is popular at Christmas was autism families at Toys R Us stores and has been really successful.

Autism needs to be accepted it’s here to stay. I’ve been told numerous times “he needs a smack” “mine would never behave like that” insinuating I’m a bad parent, I’ve also heard “he’s too old for nappies”.  Well judgey woman and friend thanks ever so much for your autism parenting advice based on episode 1 of the A Word and Rain Man in 1985 but I think I’ll give it a miss and politely ask you to jog on.

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Please let me know of any ideas you would like to see implemented and I will make sure they are passed along at our next meeting. Leave no stone unturned – trolleys, parking, lighting, eating, seating, queueing –  if you think it can make a difference share your ideas. I am confident that this will turn out to be a really positive experience making all our lives a little bit easier.  I will be posting further updates regarding Manor Walks as and when they come up.

There is an excellent charity Autism Northumberland based upstairs in Manor Walks already providing great services and facilities to families affected by autism and well worth a visit. I know their opinions on transforming Manor Walks will be greatly valued.