Conversation frustration 

​Reilly said cheese tonight. He’s said it before and I love it when he does as it lets a tiny chink of light through on what lies ahead. He went on to babble for about 15 minutes and for some reason tonight it made me really emotional.  

I cannot express how huge my desire to have a conversation with my boy is.  


He tries so hard. It makes me so fucking angry the frustration he faces daily to make himself heard. Don’t get me wrong we manage most of the time I know what he wants as he is a brilliant communicator via other means but sometimes it overwhelms me that he’s 6 and we haven’t had a conversation.  

Imagine having none of the magic conversations about the run up to Christmas, I tell him regardless and talk to him as much if not more than Alex and Ellis, sometimes searching on his face for clues that he gets it. I think he does there’s no flies on Reilly and I think he knows exactly what’s going on but I can’t be sure because he can’t tell me. He points to Cars3 track in Argos book and then at Santa so I know he’s made that link which is great and I’m now working on Reindeers and carrots.  Might not sound like a big deal this is just an example but apply to any part of his life. How was school today Reilly? Nope  I’ll just check what his teacher has written in his diary or I just don’t know. 

As a Parent it’s your job to ‘get it’. I need to know what’s up so I can fix it, help him, make him happy. Sometimes I just can’t figure it out and that pisses me off royally. 

In my poem called I’m Jealous which I wrote a while back I didn’t hide my jealousy of others in fact I was practically green with envy. I still am at some things and sometimes when my head is straight I know people might be jealous that they don’t have a Reilly. He’s awesome and I long for the day that we might talk, that day might never come I’m prepared for that, I think. 

Holiday for one?

When a holiday is not a holiday. That’s what my last week has been. Reilly’s need to be beside me 24/7 has excelled this week. Probably because he’s out of his comfort zone but by Christ it’s hard work.  He wants me ALL of the time which sounds really cute.  Sometimes I can give it the smug one ooo look how I’m his favourite then other times I could pull my hair out to be alone for half an hour. It’s exhausting. Not only does he have to be with me constantly he has super enforced his rules of no one eats before him or takes a drink. If I’m caught having a sly swig of Diet Coke WW3 erupts.

Shane has tried many times to lure him away. In total in 6 days I’ve had my morning out with Ellis plus 3 hours on a sun lounger with my book. The time we are all in the pool together is great as I’m still there but try sneaking off to look in the tat shops not a chance. He’s got a built in radar that goes off everytime my invisible tag drops below 6ft radius. Other kids are invisible to him, even his grandma and granda have barely had a glance from him. The big bonus is we’ve had time as a foursome to splash about that never happens at home. Thank god Ellis has made some amazing friends to go on the slides and play footy with.

He has once made the kids disco, the one where you absolutely must not dance on the stage or go behind the wall where the equipment is 😬 but when he’s done he’s done, no negotiation thats near impossible with a non verbal child, he’s off as fast as a whippet back to the room.

My time for relaxing has been when I’m back in the room with Reilly at 7.30 after his chips. Tonight is 7pm and he’s sat with his lego on the floor happy as Larry. I haven’t got as far as getting into night time clothes. We’ve been for a walk to a cute ice cream parlour and Shane attempted to get him back to the room so I could sit down with a drink and eat my tea. I hadn’t even got back from the pop machine when he appeared at my side and tried to tip my plate for having the audacity to get my food before him. Screams, pouring pop on himself and throwing chips to the back of his mouth later I abandoned ship for the sake of the other diners and my own sanity , not for the German cow who glared at us the whole time for spoiling her Torte and came back to our room. All calm restored. Peace. Silence and half decent wifi. Just how he likes it, im fond too

I said after last years never again but we all love the sun and the beach and the food how do we find a balance? A villa I think.   Ellis looks forward to his holidays so much it’s unfair for him to miss out so much.

So holiday for one anyone?

Hola again!

Back in Majorca one of my favourite places. I was dreading the journey, I’ve been anxious about it for weeks! I found the downloads from the Newcastle Airport website really useful this year as Reilly knew each step. I downloaded the autism passport from Newcastle Airport website in preparation. I was disappointed with it last year, not sure if it was jut a blip because this year it was brilliant. It doesn’t allow you to check in first which would be a major bonus for us but luckily there was no queue. The girl on the Jet2 desk rang and arranged for someone to meet us at the gate before everyone else was called. We chose to board first which was brilliant none of the pushing and shoving of people terrified that they aren’t going to get their hand luggage stowed away before we take off 😂.

The plane only had 50 people on it so we ended up with a row each. Reilly never really removed his cheek from mine so not the most comfortable but his behaviour was just brilliant.

The transfer in Majorca took for ever. We were last off and in future I’ll be getting a taxi, Reilly wanted off at every stop understandably and got quite upset when we stayed put. We arrived at the resort past meal time and were given a picnic. It was nice but Reilly simply wasn’t eating a ham and cheese sandwich he regarded it with the same enthusiasm as he would a shit sandwich. We located our room at 10 o clock through what I can only describe as similar to the gathering from Battle of the Bastards,Game of Thrones. There were kids EVERYWHERE some big, some small, all running, some with weapons and all screeching. My immediate thought was WTF have I done. The second we entered our room Reilly put his pyjamas on and Shane went on adventure and returned with a pizza and 2 chicken wraps 30 mins later. Things were looking up. I unravelled Reilly’s melatonin from the 4ft of bubble wrap (extra security) I had wrapped it in to ensure are arrival and he was asleep within 30 minutes and taped that way until 8am 😀.

Breakfast was horrific. Reilly walked in to the extremely busy dining room and turned on his heel back out. Only one place Reilly wanted to be and that was the pool, thats where he stayed for the rest of the day. Me and Shane split shifts to get time with Ellis and 10 minutes on a lounger. He even managed to dodge the 6pm winning pool closure guards and jumped back in at 7.20! He’s ate chips and bread,typical beige. The hoodlums from last night turn out to be really nice kids and families I’m pleased to say.

I’ve only had one run in with a Dutch gentleman. Reilly while running away from me stopped to throw a doll in the pool. He wasn’t happy and came to tell Reilly off. Asking which language he spoke. Now this is a tricky one. I said he understands English. The bloke got hold of Reilly’s arm and demanded an explanation as to why he threw the doll in the pool. I was torn between riding it out waiting for Reilly to answer or pushing him in the pool. I chose to swat his hand off and tell him Reilly can’t talk and gives no shits about what goes in the pool. If it’s on the ledge it’s going in, he understood exactly what I was saying and I apologised that the doll got wet and he shuffled off.

Tonight Reilly has made a new friend in the old Spanish lady on the onsite shop, everyone is terrified of her but I caught her watching Reilly organising the planes etc so I flashed her his card I made which say he’s non verbal autistic in Spanish. Ah she loves him. She said Bye Weilly (yes a W not an R) and he gave her a kiss! WTF? Dinner was chips and bread again.

We are now in the room while Reilly enjoys the kids disco but from our balcony instead where he can hear and see the flashing lights, it’s all a bit too busy for the lad.

Groundhog Day tomorrow I’m sure. Ellis has made friends to play football with and saw Fraser Foster (England Keeper) in the airport so he’s happy, they even played a teeny bit together today!

Reilly’s memory

I’ve had such an amazing week with Reilly.  He is pushing hard with his communication skills.  He is more verbal, not words but sounds and I try and get him to practise them everyday.  You can see him watching your mouth intently trying to figure the shapes and movements.  He is using his signs more and has made up his own too which he showed me on at least 8 occasions last night which coincided with him wanting to go upstairs. For now I think that is what it means – I might be wrong.  Like charades on a whole new level!

He got an ipad mini for christmas and he loves it.  Mainly for watching kinder eggs, junk food taster.com (if you haven’t seen his youtube channel take this as a warning, it does exactly what it says on the tin) and Pocoyo.  But he also uses it to point out photos of who he wants to see and where he wants to go.

I got such a shock earlier on in the week when I sat and watched him type in Jet2.  He loves holiday brochures and tries to say pool and trees etc when we look through them.  He has moved on from that to this lot of logos.  He can remember how to spell universal and illumination which I find just fascinating!  He uses the caps lock to make sure they are typed correctly too.  What a brilliant memory!  It doesn’t stop there though.

He has also been typing in number letter sequences, different sets like this but many more:  NK59DMXNK59DMENK59DLVNK59DMF.

If you google that you will get nothing.  If you add a space between each sequence NK59DMX NK59DME NK59DLV NK59DMF will find that they are  Arriva bus registration plates, not just any old buses, buses from Newcastle upon Tyne.  Buses he has either been on or seen.  Given the fact that he sees the reg plate for all of about 15 seconds max as the bus approaches I’m pretty damn well impressed!!   I think its safe to say he has a really good memory.  We knew he remembered twists and turns in roads from being tiny but this has blown my socks off.

When I made the realisation last night it gave me so much hope.  I cannot express how much.  All autism parents must feel the same.  Sometimes on my dark days I think is this it, is this my level of communication with Reilly.  Crying, frustration on both our parts – it’s just hard with a non verbal child, many don’t realise until they see us both in action,  so when you see a little chink of light that is leading to a new pathway  it is THE greatest feeling.  I am excited about how I can learn to pursue this brilliant memory talent to help us communicate better, maybe a whole new learning style whatever it brings it’s got to be positive, maybe a visit to the casino you think?

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 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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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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