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. 

Advertisements

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.