How was your day?

Well i’m back i’ve been AWOL for approximately 2.5 hours.  Reilly as per usual did not want to come in from school.  He had a huge screaming fit, got outside lay on the path and the likes so I wrapped him up in his big (filthy covered in ice cream coat not his nice Barbour one) and took him for what I thought was a jaunty walk and a bit of a wander.  I was equally as unappealing in my coat also covered in ice cream but its warm so doesn’t matter right?

Wrong.

I ended up on Reilly’s favourite bus the X8 going to Newcastle, minging, no makeup and hair like a haystack.  It’s ok though I thought he’ll just stay on it and come straight home.  I can sit on a bus for an hour with no phone, no problem.  Did he stay on the bus?  Did he bugger.  He joined a queue for a double decker to come home but the concept of waiting for the driver wasn’t cutting the mustard with Reilly and I went from hood holding, piggy backing and carrying him to stop him running off while we waited the 7 minutes for the driver to finish his pie or whatever he was doing.  Just as the bus doors opened and people began to file on Reilly takes off.

Legging it through Marksys like his life depended on it.  Lightly brushing past the valentines displays of prosecco and chocolates as he went.  Laughing at the top of his voice. The mixture of my big, icecream covered winter coat, running after Reilly and the bright lights start to make me feel a bit panicky. My trousers a s always are hanging down like a gang members from L.A. but I catch him just as he’s about to get in the lift.

Oh come on Reilly let’s go and get the bus and go home for a kinder egg, pizza, drink, build a track, do you wanna build a snowman?  Anything to get him out.

If he could speak I imagine he said get stuffed loser and wriggled out my grasp and we were off again.  I knew where he was headed, my worst nightmare.  Fenwicks Toys a) i’m skint and b) it’s horrific.

We got in the lift with a couple of beautifully dressed young men.  I glanced in the massive mirror and was instantly aware of how rough I was looking and the hem was down on my trousers.  Reilly pressed every button on the way up opening and shutting the doors and pointing at the uncomfortable young lads shouting toooo at them.  To tired to explain.

After attempting to carry the largest Hot Wheels set to the counter about £80 and me putting it back 5 times he gave in.  He lined up some Thomas trains and ran away from Peppa Pig.  He decided on some Finding Nemo Mashems and 2 tiny minions figures thankfully in the sale.

Now Fenwicks isn’t contactless.  If it was I’m laughing Reilly beeps the device and then claps as he’s such a good lad.  Inserting cards and punching numbers is a whole new ball game that always ends in huge radges and my card almost in two. Lad on the till was lovely thankfully and didn’t mind the repeated attempts to get it right.

A more controlled walk through Marksys back for the bus, dying for a wee but not a chance on gods earth was I attempting that.  The bus is there in the stand HURRAH.  I flash my return ticket. No Christine Reilly isn’t having that he wants to pay and because I am that stressed, hot and tired I give him a 50p and ask the driver to let him put it in the 50p holder.  Bus ride home was perfect he snuggled into me kissing my cheeks for the whole journey, back seat left corner 😉  SO we are home.  He’s eating a pizza and watching a Thomson 767 being spray painted for the 20th time.

So how was your day?

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The Helpful Stranger

I was over the moon today to see someone had posted on Facebook looking for a young lady who had helped her with her autistic son in our local Asda.  The little boy was really upset and grabbed onto on a passing stranger, the stranger then offered to stay with the mother and son to make the shopping trip easier for them.  Since the incident the little boy has been asking to see her again.  Given that our autistic children sometimes have trouble forming relationships its lovely to hear.

Take a bow Calli Tully the helpful stranger.

I’m a great believer in paying it forward, if you can help someone do it!  Calli has experience with autistic little ones so was unfazed and happy to help.  It’s so lovely as a mother of a child mid meltdown to see someone who gets it and is willing to help – it helps zone out the calls for a good smack, straight to his room, spend a day with me i’ll straighten him out.  I’ve heard them all from judgemental dickheads who assume that shitty parenting is to blame.

I have friends who have asked me what they should do if they see someone struggling with a child.  Most of my friends and family can spot a meltdown now.   Big question is – is it seen as interfering?  For me no it isn’t.  I appreciate any help I can get when Reilly is in full flow.  My bags are often in a discarded trolley or dropped on a floor somewhere usually complete with phone and money.  Sometimes just having someone to talk to while you attempt to calm the situation is good, move your focus even if it’s just for a minute.

This is my list of things I would find helpful:

  1. Don’t judge!  If my child is kicking off, making noises, jumping, biting things or behaving in a manner which you think is odd don’t look at me like i’m a parenting failure.  Sometimes these behaviours are the child self regulating and coping with the environment in their own way.
  2. Let me in!  If you are at a checkout and i’m behind you PLEASE let me go first.  Time is everything and every second counts.
  3. Come with me! Walk with me to the car/bus stop.  An extra pair of hands is invaluable if you’ve got a meltdown and a runner.  It’s near impossible to juggle the lot.  5 minutes out your own day could make a world of difference.  Offer a lift if its needed and you can.
  4. Defend!  Hear someone making comments ask them not to be so rude it adds to the pressure to calm the situation when others are standing over you all self righteous (yes it does happen).  I can guarantee walking a mile in my shoes will leave them in need of a weeks holiday, a spa day and a new pair of shoes to boot. (Not so important for me as I have mastered the art of the death stare sometimes accompanied with words that end with off).
  5. If I look like i’m going to cry offer a shoulder. I’m at breaking point and it’s best to haul ass and get the hell out of there by any means necessary.

I appreciate not all parents will feel the same as me but if you see me and Reilly and i’m struggling don’t be shy.  Even just the nod of knowing, that look that says ah bless you both can be enough to muster a bit more resilience and move on.

 

 

 

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.  😩

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.