From the other side

I recently asked my friend Dave if he would be interested in writing a guest blog for The Life of Reilly. He’s always been fascinated by Reilly, I’ve watched them bake, prepare food,set up tracks together and Dave is always looking for new ways to communicate and engage with him. I have never considered the other side. The guilt others can feel when they see their own friends struggling. This blog has had me in tears. ❤️

Being a parent can be tough. We can all agree to that. There are times of great joy and pride, especially in the early years when they begin walking, talking and doing all the funny things toddlers do. Even the ‘terrible twos’ and ‘awful fours’ didn’t detract from it too much for me. I was just revelling in being able to have simple conversations with my little boy and other than the regular tantrums he was generally really nice to be around.

The other end of the scale, of course, is the teenager. Where they talk to you in grunts and go all moody for the slightest reason. I can deal with that, as foster carers we’ve been dealing with moody teens for 20 years. You have a spat, go your separate ways and still end up having a decent conversation with them later… if you’re lucky.

The bit in between this is the most frustrating. The 5 to 10 year old phase. The bit where just the sound of their voice saying ‘Maaam!’ Or ‘Daaad!’ for the thousandth time that morning grates on you so much you keep thinking ‘Jesus Christ I wish he’d just shut up’

It’s more than that of course. It’s the communication itself that winds you up. The incessant whingeing, demanding, trying to get each other into trouble, being awkward, the backchatting… the list goes on…

I don’t mind admitting that quite often I’ve wished that, even just for just one day, he would just stop speaking.

But then… I’m the father of a neuro typical child and when he is quiet, I can enjoy that silence, knowing that he’ll be bending my ear again in a little while.

The amazing family at the heart of this blog have been there from the beginning. Clare, my wife, and Christine were pregnant at the same time and we worked together before and after the boys were both born. We socialised and holidayed as families and watched them grow and develop together… until they didn’t.

With heavy hearts we watched this family go through the realisation process and diagnosis of Autism for their son and with a sense of guilt, we watched our boy develop rapidly whilst Reilly just… didn’t.

Watching Reilly’s autism take shape was heartbreaking. His melt downs and challenging behaviours were one thing but the fact he is non verbal is the thing that has always affected me deeply. Watching him and his parents not being able to communicate is what makes me give my head a wobble when I get frustrated about the incessant kids voices around me. I know that Christine and Shane would give anything to have Reilly shout Mam or Dad just once never mind a hundred times. To have a simple conversation about what he wants for tea or where he wants to go but most importantly, to be able to ask him what is wrong when he gets upset.

In recent years things have changed. We moved out of the area and our working lives have gone in different directions which means we don’t get anywhere near the time together that we did or that we’d like but it does happen and it’s always a joy to have them around.

I’ve never found being with Reilly difficult. He’s different that’s all. Challenging at times but it’s never disturbed or frightened me. It’s never dissuaded me from trying to interact with him on the most meaningful level I can. I try every time I’m with him and mostly he seems to ignore me… and that’s ok.

Recently though, it’s been different. We know that he’s beginning to communicate in a multitude of different ways and every little win makes my heart swell for them…

Out of the blue last week, Reilly asked to come and see us and as always it was nice to have them here but what happened that day just blew me away.

Reilly went to our kitchen and I went with him as usual, just to see he’s ok and try to gauge what he might be after. He opened our food cupboard and our conversation went as follows.

Are you hungry?

Reilly made the sign for Please/Yes

Ok… what would you like?

He went to the other bench and tapped the bread. Now I know Reilly loves toast so…

Do you want some toast?

“Yes”

What would you like on it?

He opened the cupboard and pointed to the Nutella.

Ok, toast with Nutella?

“Yes”

I was already amazed but I wanted to see how far I could take this with him. He went to the table and took a seat.

Do you want thick bread Reilly?

“No” …spoken, not signed

Would you like butter on?

“No”

So I made him his toast and, after confirming with Christine on his current preference for shape and construction, I put it down to him.

He signed “thank you” and our conversation was done and I’ve never felt so overjoyed to talk to someone, to communicate, even on a simple level with someone I thought I might never be able to. This was a full blown conversation too. Question and answer, conclusion reached and he was happy.

I, however, was over the bloody moon.

We take communicating with our children for granted. We get frustrated at it at times but I never seriously wish my son would stop speaking… I know how hard it must be and I wouldn’t wish it on anyone.

Beach Life (of Reilly)

We’ve had a lovely day at the beach.  I made some observations about Reilly today.

  1. It doesn’t matter whether you are playing a beach based sport such as footy, cricket or rounders Reilly will sit on your goalpost, move your wickets and throw your ball in the sea.
  2. Reilly will enter any beach tent shade thing without consent and have a lie down.
  3. Reilly will claim any bucket and spade as his own despite small children’s wails of discontent. He gives no shits when I say Reilly that’s not yours, in-fact it encourages him to run faster.
  4. Reilly will join your BBQ without an invitation and will eat any bread type food you have kicking about, he is also partial of a slurp of random pop left unattended.
  5. Reilly will attempt to mount your body board or surf board regardless of whether you are on it or not.
  6. Reilly gives not one f@ck about any of it.  Oh to be that free.

Great day rounded off with some chips and an icecream.  Met some lovely  adults today who were intrigued by him.  Their kids and grandkids not so much haha.

Love him.

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Did you ever have one of those days? 

When I got home tonight after our post school jaunt about it was 8.15. I was cold, wet and tired. The tiny blister on my little toe is now a hole that hurts.  I had with me one my little pony Easter egg and a sly fry’s peppermint cream. As I came through the door I was greeted you the dove from above “Mam what’s for my tea!”.  I nearly dumped Reilly in the kitchen and considered bolting back out the front door and hiding in the nature reserve across the road. Nearly.

Tonight we went to the park unfortunately tonight none of the child things were of any interest Reilly wanted to be on the field where the junior footballers were trying, in their clubhouse and more alarmingly in their cars. Looking in the windows and trying the handles like a lifelong twoc-er. So I escorted him out under duress. 

This happened next I only filmed a tiny snippet for safety reasons.


Back up on his feet he ran straight back into the park picked up a handful of gravel and ran, i ran after him muttering FFS while trying to stay alive from exertion.  Only one thing for this scenario and that’s the Piggyback, as long as I have the strength I can get him from A to B with no escape. Bit like Bran and Hodor we headed out the park to McDs which isn’t that far but with Brandon your back and your ‘big coat’ while it’s pissing down its zero fun.  Got there wouldn’t go in. More kicking off crying etc so I thought I’ll buy him a kinder egg from the garage. At this point I’m dying for a wee and have a trapped wind pain in my bum, wouldn’t go in and I can’t use the toilet because the door is too far away from the toilet to keep shut with your foot.  He won’t do McDs toilet neither because he doesn’t like the sounds.

Willow Farm it is because I cannot carry him another inch and he collapses in a heap and refuses to walk in any other direction.  I never dreamed one of children could match me on stubbornness but this kid is a master.  I plodge along praying my bladder will hold out. I buy one child’s carvery (no waiting) and one drink and sit like an drowned rat while Reilly jumps up and down on the kids chairs watching Finding Nemo.  We head to the carvery where the lovely young man says come on lad tell me yourself what you would like, I do my usual hah hah hah he’ll have Turkey but he asks Reilly again to which I say he can’t tell you he’s non verbal autistic.  Honestly the lad was mortified and apologised profusely to which I replied don’t be sorry it’s ok it really is and meant it.  He asked tons of questions about how we communicate etc which is great. 

It’s now starting to get dark, I have no phone (still) so I message shane on the iPad but it hasn’t SIM card in it after Reillygate £200 bill and it’s not connecting to the pathetic Cloud. My messages delivered after I got home.

 

So we are off, my blisters popped and I still haven’t had a wee. Reilly is pointing at my shoulders to get on but I just can’t so make a running game to keep him moving forward.  Straight home nayyyy Christine we are going to the garage for a bastard kinder egg at this point I would have bought the ten pound egg to get home, he settled for The My Little Pony £5 waste of money egg and I’m appalled at how quick I crumbled tonight. The walk home I can’t quite decide what fettle I’m in on one hand it’s nearly bed time on the other I’m sick as a chip and hungry. 

25 minutes later ….

Opens door “Mam what’s for my tea?” Wee before tea I say.  With coat still on gets pans out and starts tea I can’t eat it as it’s got dairy in and can’t be bothered to do anything else and put myself 2 slices of toast in and make a cup of tea. Put my fave Morello cherry jam on it and dish up the pasta while doing this Reilly puts both slices of toast face down on the kitchen floor and stands on them still in his shoes and tips my tea down the sink,he takes his new purple my little pony out the egg brushes its hair once and throws that in the sink too and I have to just stop and breathe. 

Some days are like this, most days in fact are like this. It’s not all Jet2 and cute photos.  I’ve sacked off the toast and in bed with a cup of tea and my sly Frys peppermint cream.  Pray for a full nights sleep.

Reilly 5 Christine Nil.

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. 

 

 

This one’s for you

2 weeks down, 4 to go.

I decided over the last week out and about with Reilly that I would take note of which groups were most judgey.

I’ve been upto our local shops a couple of times this week at Manor Walks in Cramlington, Reilly’s choice bus, back seat right corner, Sainsbury’s Cafe (great staff ), CEX  (great staff don’t mind him one bit) for a look at the DVD covers, park,  back on the bus.  No its not the family packed adventure day like many others are having but it’s a start.

Most of the judgey tuts and glares come from  70 + year old women.  This makes me really sad it’s my Mam’s age and most will be mothers and grandmother’s, you would expect a little patience.  I had a few run ins just yesterday.  Reilly absolutely loves bank machines and card readers.  Doesn’t matter where I am if I am paying by card he wants to put the card in the slot and press the buttons.  Yes it’s a pain in the arse if you are behind me in the queue while I try and lift him, sort out my shopping, chase him if he wrangles loose & I have to give chase and come back for my card and the one they hate the most god forbid he pulls the card out a second too soon and we have to do it again.  I hear the ‘for gods sakes’ and the tutting behind.  Can you not see by my face that i’m stressed enough? but you know what Reilly loves it so for now you can wait.

Heading back on the bus yesterday after the usual nightmare wait as the wrong buses glide past and Reilly screams to be on them.  We eventually got on  and I actually heard 2 old bags sat at the front say ‘she didn’t even tell him shut it’. Sigh. What do you do?.  I shouldn’t have to explain myself constantly and its soul destroying and exhausting being perceived as the world’s shittest mother on a daily basis.  If he wasn’t autistic does it still give you the right to judge me?

The second group of people are  new to age 2 parents (that’s a guess just what I see).  The ones who haven’t met the terrible two’s or fournado’s yet, they’ll be stressed to bits at the first tantrum never mind a full blown meltdown.  The ones who WILL experience the starfishing in the toy aisle, the WILL get the flinging of the celery sticks out the tupperware – they just have a little way to go yet.

Usually a look of distaste from this group, the females sometimes travel in pairs with latest designer pushchairs that in a years time will be covered in  Greggs pasty just like the rest of us who said we would never do but did it for an easy life anyway and a quick glance around New Look uninterrupted.  I often catch a quick glance between them that scream’s ‘I’d never let mine do that’.

Luckily Judge Judy’s are in the minority but it’a a pretty large minority.  I’m so thankful to the people who give me that acknowledging smile or watch my shopping while I leg it after him (Helen Beadling, Sainsburys yesterday).  You all make a big difference to us.  As for the rest …..

THIS ONES FOR YOU x

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via GIPHY

Do you think my child is autistic?

Crikey what a question but one I’ve been asked many times over the last month or so. I made a cake once but I’m not Mary Berry, please remember this.

Children with ASD don’t all have exactly the same symptoms and children that do have the same symptoms can differ in severity massively.

Reilly developed pretty typically sitting, crawling, walking all at the usual milestones.  He even had a few words at around 16 months then the words stopped pretty much overnight  around that time.

Reilly never babbled as a baby.  I remember saying to people he’s so silent. Literally not a sound.  He didn’t respond to his name either.  I could say Reilly 20 times and he wouldn’t turn his head once.  These were my biggest red flags.

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Since I started the blog I must have had a dozen ‘do you think my child has autism?’ questions.

I could never answer that! Ermmm I gotta run is my normal response.  What I would say is I have 2 neuro-typical (not autistic) children and they both displayed some of the signs listed as a nod to autistic behaviour.  Just because your child lines up his/her cars or trains (- all 3 of mine did this) doesn’t mean they will get a diagnosis.

It’s way more complicated and you must meet the 3 main criteria as shown in the chart.

 

So I thought I would do a comparison between the common signs and how Reilly measured up.

No babbling as a baby – Reilly was a silent as a mouse.

Poor eye contact – fleeting glances but rare to hold a gaze upto age 3.  He’s much better at it now.

No response to calling name – I could shout 20 times and he wouldn’t turn his head until turning 4.  Now he does most of the time.

Speech regression – Reilly did have a few words around 16 months and they stopped almost overnight.

Lack of empathy – I have seen Reilly only twice show concern for someone.  Once when a friend was upset and he spontaneously got on the chair behind her and gave her a cuddle.  The other was a lady sitting with her feet in the sand pit at Morpeth park, she looked sad and deep in thought.  He crossed the sand pit and stroked her hair.  Incredible to see for us.

Uninterested in making friends – We went on holiday with our friends when he was 2.  Not once did he initiate any type of play or even acknowledge that little H was there. Heartbreaking for us – for Reilly just another day at the office.  Alex my oldest used to stand on his own in the playground nearly every day dropping stones down the drain, he’s not autistic.

Doesn’t like cuddles – Couldn’t be further from the truth.  We nickname him the guppy as he comes at you with his lips in sucker mode and attaches to your cheek.  This is a red flag for many other children on the spectrum.

Spontaneous laughter – This used to freak me out but not now I love it. Sometimes he will burst into laughter at absolutely nothing.  Really big hearty fits of uncontrollable giggles.  They stop as quick as they start.

No pointing – Reilly does point at pretty much anything and everything – planes, the big yellow M of McDs, cats, birds, food. Many autistic children do not.

Repeats exactly what others say without understanding – I wish.  Not applicable as he doesn’t talk.

Doesn’t use toys or  objects in pretend play – yes he does but not until age 3.  He loves a play in a little kitchen or making car crashes with the cast of Cars 2.

May have a good  memory – exceptional he remembers roads etc and often surprises us.

Rocks, spins, walks on toes for a long time or flaps hands  – Reilly doesn’t do any of these.

Likes routines, order, and rituals; has difficulty with change – he likes things the same I only wish this applied to the mountains of cars and train tracks strewn all over my conservatory.

Obsessed with a few activities doing them repeatedly during the day – He loves trains they are pretty much his everything but  I feel this could apply to most small children.  Alex was obsessed with watching Winnie the Pooh, it’s all he did.  Ellis loved electricity pylons took us months to work out why he shouted four-four when we passed them.  It was from the old channel 4 adverts (go figure).

Plays with parts of toys instead of the whole toy – Nope!

Doesn’t seem to feel pain – He’s rock!  Rarely cries through anything physical.

Sensory issues – Reilly has big issues with certain noises, he also likes rough textures and loves cold.

Meltdowns – Not to be confused with tantrums just to get their own way.  I’ve seen plenty of tantrums over the  years from my oldest two and a meltdown blows it out the water.  A meltdown is relentless, its sometimes violent, can be dangerous and its extremely upsetting.

There are many more signs but if you really suspect your child, grandchild, etc has autism then you already know this as you’ve already googled it and watched the youtube videos.

TRUST YOUR PARENTAL INSTINCTS.

I absolutely knew Reilly was autistic well before his diagnosis.  When Ellis was very ill as a baby I knew there was something they were missing and I was right.  Don’t be fobbed off if you aren’t satisfied.

If you are concerned cold hard evidence and facts will help massively.  Take photographs, video behaviours that you are concerned about, keep a diary of what happens before, during and after meltdowns.

They sometimes have an awesome ability to behave in the exact opposite manner you’d expect them to when with the professionals that are monitoring your child thus making you out to be the biggest liar in liar town.

Be prepared time is everything the quicker everything is set in stone the quicker the right interventions can be made.  We got a diagnosis at 3 and were very lucky to get one so quickly.

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