Parents evening

Tonight we went to Benton Dene School for Reilly’s first parent’s evening.  I absolutely love Reilly’s school and his teachers.  It’s so important to trust them. When you have a non verbal child you must be 1000% confident he’s happy and I’m absolutely certain he is.

It’s intriguing to hear what their thoughts are on Reilly.  How on day one he pushed a chair to the bench, got on it, opened the cupboard and helped himself to some cereal and a bowl, made it and sat down at the desk to eat it.  Just proves he not just fiercely independent at home but he is at school too.

He’s communicating with his PECS cards really well and I got to see a video of him sitting in their small dining room where approximately 10 have their lunch together.  Not once did he require help and tucked into his dinner no problems, nor flipping anyones plate which I was surprised to see.

All in all we are all really hopeful that Reilly will talk.  Academically he’s bang on and learning is not a problem.  We spoke to his speech  therapist and occupational therapist who are just getting to know Reilly and all his unique ways and we’ll work together with them on communication.

I left with a little bit of a spring in my step feeling the future is bright for the little man.  I need to bottle this feeling and have a swig everytime I feel a bit grim 🙂

Here’s a video of Reilly on holiday for no other reason that he’s just plain adorable, just doing his own thing xx

Reilly says no

We are having a right carry on trying to get Reilly in the bath at the moment.  It stems from a hairwashing disaster a couple of weeks ago, it was a two man job and i’m not sure he has forgiven us yet.  He literally hyperventilates when the bathroom door is open.  He hates his hair being touched.  Even when he is asleep he will wake if I move his fringe or tuck it behind his ear.

I videoed him last night as he does this every time the bath is mentioned.  He’s a little scruff.

Top marks for communications skills though I think you will agree.

xx

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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I captured a word on video! 

Lovely day today with Reilly, we went to Pet’s Corner in Jesmond. Sun was shining and there was a Thomas Train there which made Reilly super happy.

Reilly loves Jesmond Dene because it has everything he likes in one place and that’s park, cafe, ice cream, woods and chickens. What’s not to love?

I was over the moon when I took some video of him on the train today and managed to catch Reilly saying taraaaa to the people we left at the stop!  He’s said it only a few times before and I’ve not heard it in months.  I love it, small to some – the world to me.

Another massive achievement for Reilly today was he insisted on fastening his own shirt buttons, they are really small and fiddly but he would not be helped. Took a little while good job I wasn’t in a hurry but he got there.  Last time he attempted that on holiday he threw his shirt off the balcony.

He’s been mistaken for a girl twice today by random granny’s but I’ll forgive them it must be because he’s so bloody pretty!

We’ll not talk about the 2 hour meltdown when we got home, not today.  Love him.

The photo that makes me anxious 

I came across a photograph today that I haven’t seen for a little while.  I love photographs, I always have my camera or iPad to take them. You don’t realise their importance until you lose someone very special and realise you didn’t take enough.  This one however made me flush with anxiety.


Reilly burned his hand really badly a couple of years back. I’d gone to see my Mam and Dad returning from holiday and made some pasta while we waited.  They have a ceramic hob.  Pasta cooked and put to the side they walked in, still had their coats on pulling their suitcases and amongst the flurry, in a split second in the tiny kitchen Reilly put his hand flat on the still extremely hot hob!

I’ll spare the details I don’t care to write it but take it from me it was horrendous.  Next door neighbours were tremendous wrapping his hand, taking us to hospital. I on the other hand went to absolute pieces.

Now imagine you don’t know whether your child comprehends what has happened, where they are going, why the hospital is so bright and scary, why his mam is forcing his hand under a cold tap in a tiny room he’s never been in before, why we are crying, why is he hurting.  It was horrific. He couldn’t vocalise anything but pain through screaming.

The staff were incredible he was given morphine and began to calm.  That was just the beginning of the hand journey.  Soothing him at night was so hard, keeping his hand out of water was hard, trying to remove bandages but most of all the frequent trips to the RVI to check it were a nightmare.  He knew and still does the road that leads you there as soon as we hit it he’d meltdown knowing what was coming. They told us he’d probably need a graft which made me feel sick to the pit of my stomach.  As the weeks past he became attached to his bandage boxing glove and used to put a sock on it to keep it clean, he continued to wear a sock on his hand after the bandages were off – think we were bothered by the strange looks at the child with the sock on his hand, think again!   Luckily no graft was required in the end.


A truly traumatic thing to endure for any parent of any child but a child with special needs multiples it to a whole new level. I thought twice about sharing this post but if you want the whole picture it comes with plenty of warts an all.  Illness with a special child is extremely hard to manage, a normal day is hard to manage, anxiety fueled and sleep deprived. 

Next time your SEN friend or families little ones are ill offer some help you have no idea how much it will be appreciated. A lift, a takeout or just a friendly ear.

Let’s talk about PECS baby! & Tippy Talk

I’ve had a fabulous day with Reilly today.  Reilly got up about the same time as the sun so I decided to get out and about early.  we stood at his pecs board while he tried to work out what he wanted to do (I was praying not the swimming pool for purely selfish reasons) after continuous pointing at shopping trolly’s and Toys r Us signs (not today Reilly)  I switched on my Ipad and showed Reilly photos of various places we would normally visit.  He chose the Tim Lamb Centre. A great place in The Rising Sun Country Park with tons to do for the little ones and a good chance to relax a bit knowing its none judgey and everyone get’s it.  30 minutes on the bus, 15-20 presses of the bell to get off a swift explanation to the lovely bus driver and we were there.

I met some lovely people today parents, teachers and kids.  It never fails to astound me how very different all these children are.  I had a discussion while eating my lunch with one girl around 15 about who was the best Paul McCartney (post Beatles) or David Bowie and watched 4 second clips on her phone of many songs from both artists, she had unbelievable knowledge and passion in equal amounts. ps David Bowie by the way no competition.  

I also chatted to a teacher who was there with a young man again around 15 who was completely non verbal.  I’m always fascinated watching people communicate and the methods they use to do it.  I often think about whether Reilly will always be non verbal and I prepare myself constantly looking for products that can help us.  I talked to him about a product I was trialling at the moment that may be useful to them.

I registered my interest in a product called Tippy Talk earlier on in the year.  I’d seen it on twitter and thought it looked fantastic.  Tippy Talk is an app which allows the user to translate picture messages into readable text.  What’s not to love here.

ttThe TippyTalk app allows a person with a verbal disability to communicate by translating pictures into text messages, which are then sent to a family member or care givers phone or tablet. This allows the person who is non-verbal to communicate and express a desire, want, need or feeling. This communication is not restricted by distance, the person they wish to communicate with can be anywhere in the world. TippyTalk also reinforces language development, by allowing a parent or caregiver record their voice over each picture. TippyTalk grows and evolves as the needs of your loved will also.

TippyTalk is unique in that it removes the person with the verbal disability from the isolation of same room communication. It also allows the parent or caregiver to capture images that are  uniquely familiar to the person using the communication app. No two TippyTalkers will be the same, each unit is extremely user friendly and simple to program. Putting the control back into the hands of the parent, after all no one knows their loved ones better than they do. No other product on the market today is offering the personalisation, social-communication and independence that TippyTalk is providing. TippyTalk is breaking down communication barriers by allowing the user to connect and communicate with two or more parties at the same time, while ensuring that this communication is not limited by distance or physical impairment.

Rob Laffan the creator contacted me after reading my blog and asked me if I’d like to trial it with Reilly.  He has a daughter just like Reilly so he get’s it. The verdict is I love it.  It’s so simple.  I have only just started teaching Reilly what it is all about and once he starts to really understand that his requests are instantly received regardless of whether i’m upstairs, outside or at the shopping centre I fear my phone may never recover from the constant messaging it’s going to receive.  I will video the whole process of Reilly using Tippy Talk and how the messages are displayed in real time.

Reilly can tell us he is sad, that he wants a hug etc.  I can see it being hugely helpful with simmering meltdowns when all is lost in the frustration of communication.

We need to be able to communicate.  Looking around the Tim Lamb Centre today it was a big melting pot of different methods. I NEED to be able to have a two way conversation with Reilly it’s all I think about  and I’d trade for a lottery win in an instant.  You will never know the pain of not knowing why your child is unwell or upset until you’ve walked in our shoes.  Tippy Talk will change that I’m sure.

There’s a free trial at the moment check the website for links to download.  No I’m not on commission, when I see a good product I’ll share it.

Watch this space for the video of myself and Reilly using Tippy Talk.  Previous video scrapped because it contained spontaneous nose picking followed by close up examination and tasting by Reilly. Still looked cute but not the production I was looking for.

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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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Is my little non verbal gerbil finding his squeak?

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The finishing line is in sight!  I dread the school holidays I even feel extra anxious as it draws closer not because the kids are at home (well maybe a bit, ok a lot) its the absolute carnage it causes when its time to go back.

I’ve been an absolute cop out this week and Reilly hasn’t been anywhere other than the park, there are times when I just can’t put myself into the inevitable situations that comes with going out and about with Reilly, sometimes  I just don’t have the strength. Probably a lot to do with the antibiotics i’ve been taking I’ve turned into a bit of a hermit.

Going a bit stir crazy I left Reilly with Thing 1 yesterday to nip to Aldi for some essentials, I sneaked out using all my stealthy tricks and managed to get away undetected, even remembered my bags for life.  I hadn’t even got past the pain au chocolats and my phone was ringing to come back.  Fail.

But this week so far has been highly enjoyable.  I don’t know why we put so much pressure on ourselves to get out and about when really you’d rather stick rusty forks in your eyes than negotiate the bus timetables and the judgey public.  It’s been really chilled out building tracks and tents, being a horsey, watching films which is pretty rare.  We have watched Cars 2 four times today, 5 times yesterday and always from the same starting point 8 minutes in. I love it when he watched films as he sits with his cheek pressed against mine, its snuggly and its loving and I don’t have to move for 1 hour 😉 Reilly has been high fiving his brother and even gave him a kiss so far so good.

My favourite part of this week is I have noticed how much more vocal Reilly has been.  Not with words obviously but with noises.  He came and got me today and led me to a fly in the living room and continuously said what I know to be shoo.  He is counting more with sounds so instead of 1,2,3 he is making nasal noises but at the right tune and my Mam and Dad swear he said ‘in there’ when bullying my Mam into her bedroom so he could sit with my Dad by himself for his nutella on toast. He’s done this before though where he has shown a little progress then its just stopped so I try not to get too excited, if I had a pound for every time i’ve said to Shane do you think this is it? do you think his speech is coming?  I’m so desperate for it I would give absolutely anything.

So late start to today as Reilly was up at 2am and didn’t go back to sleep until nearly 8am.  He appeared in my room wearing his blow up armbands for his holidays, lights on and attempting to jump from my window sill onto the bed.  Not his greatest moment but wish Id got a video :).

Roll on Monday.

Nickname this week :  Tyrion

Cups smashed: 4

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